Jac's Tx Update - Day 9 - Saturday 9pm
Hello! It's me!! I couldn't sit back any longer and demanded access to Andrew's laptop so I could get my tuppence worth in. I have blurred vision due to low magnesium levels (very common post tx and nothing to worry about) so if this is full of typos you will understand why.
Today has been another good day. Although I am not sleeping well at night due to wound pain, I am for the first time in as long as I can remember actually waking up and feeling well. I think I had become so used to dragging myself out of bed, breathless and coughing with a pounding headache every morning that I had no idea how abnormal that was. You could also argue that I might be high on steroids but lets hope its a more permanent change than that and a glimpse of what my future holds.
I also had another huge milestone today when they removed my oxygen for the first time. I was really nervous about this as it felt like a saftey net was being taken away and I wasn't sure my new lungs would be able to cope. My sats stayed in the low to mid 90's this morning but hit a staggering 97% (normal!) this evening so I could not be more delighted. It feels strange to be free of oxygen and I feel instinctivly that something is missing...yet it feels so good. I also had my last central line removed this morning after it gave up the ghost, so in a week have gone from 2 central lines, oxygen tubing, sats monitor, cardiac monitors, 5 drains, arterial lines and catheter....to nothing. I am totally tube free and loving it.
It is a bank holiday weekend so there are no physio's around but they very kindly left me a list of exercises to be getting on with. The bike was dutifully rolled out again and I completed just over 5 minutes without stopping and planning for even more tomorrow. I also did some arm weights, although these are limited at the moment to allow bone and wound healing to take place. Since my biopsy showed no rejection I was allowed to leave my room as long as it was quiet and we avoided people (I am still very immunosuppressed at the moment). We went outside in the wheelchair and then I decided to walk back to the ward, which was hard work but encouraging all the same. I had a couple of wee stops but the main problem was wound pain preventing me from breathing deeply enough, but this will gradually subside and I'll soon be working muscles I didn't even know I had.
The ward staff have also introduced me to my "Red Book" which is basically a notepad where I have to list all my daily medications and the times they have to be taken (the anti-rejection medications have specific time frames). At the moment they get me to sort out the medications and the nurse checks them, and then they will allow me to self medicate once I'm proven trust worthy ;-) Having been self medicating all my life this is no hard task, but it's all just a process and good preparation for home. They have also given me material to read about post transplant issues - immunosuppression, medications, rejection, infection, things I have to avoid etc. It's quite a lot to take in but they will spend time going over all this again over the coming week. The nurse said this evening that if I continue at this rate I will be heading home quite soon. There will still be a long recovery process once home, and a great deal of adjustment, both physically and psychologically, but the thought of getting back to my own wee house with new lungs is an amazing one.
I also wanted to give Shelley a wee mention here. She is a fellow CF patient at Gartnavel - we went on the list around the same time 2 years ago and she was called for her transplant last month. After a flying start and getting home in only 19 days, she is now back in Newcastle with an episode of rejection. Hopefully the high dose steroids she is getting will do the trick, but please give her some good thoughts as it must be so disappoining to be back in hospital so soon.
Well, I'm now off to organise my evening medications and talk to Andrew, who has been left watching the TV while I sit here blogging. He has done well keeping you all informed - i might allow him a pint when he gets home :-)
Saturday, May 03, 2008
Friday, May 02, 2008
Tx Update - Day 8 - Friday 10:30pm
Some good news today, Jac's bronchoscopy biopsy result came back with absolutely no signs of rejection! This gives her a great start along the difficult journey towards recovery.
They woke her at 6:30 this morning to start preparing her for the procedure, getting washed and changed back into a hospital gown. She didn't go down until 10:45 though, so we were sitting about waiting for most of the morning. The bronchoscopy itself (which is a small camera used to look at the lungs) took about 45 minutes and involved her being given sedation which makes her a bit woozy and unable to remember anything of the procedure. Much like having a few too many drinks would and it even leaves you with a hangover!
She was pretty sleepy for the rest of the afternoon and didn't really come round until late afternoon. She got another x-ray then, which again was fine.
Now that she has passed that first milestone she is able to begin going to the gym next week to start some more intensive rehab. The physio explained that her muscles will now give up before her lungs,so these need to be gradually built up as she slowly gets stronger.
Although most people expect that she just woke up and could breathe properly for the first time in years, it has not quite been like that. For most of the week she had felt just as breathless as previously and was really scared to trust that these new lungs would work. There are lots of new sensations to get used to and she feels that being able to breathe more deeply is a strange and often frightening experience. She is however now just starting to see the differences, such as the fact she can talk for longer without becoming breathless. Lucky us! She also understandably still feels apprehensive about the journey ahead and is just taking one day at a time at the moment. She just wanted me to explain this to everyone, so they can understand a little more of the emtional side of the journey, although I'm sure she will explain much more when she is back online herself.
Andrew
N.B Jac has been told that mobile phones cannot be used on the ward, so if she hasn't replied to any messages that is the reason. She is getting to read the comments here though and is really encouraged by them.
P.S. Jac actually wrote most of this!!
Some good news today, Jac's bronchoscopy biopsy result came back with absolutely no signs of rejection! This gives her a great start along the difficult journey towards recovery.
They woke her at 6:30 this morning to start preparing her for the procedure, getting washed and changed back into a hospital gown. She didn't go down until 10:45 though, so we were sitting about waiting for most of the morning. The bronchoscopy itself (which is a small camera used to look at the lungs) took about 45 minutes and involved her being given sedation which makes her a bit woozy and unable to remember anything of the procedure. Much like having a few too many drinks would and it even leaves you with a hangover!
She was pretty sleepy for the rest of the afternoon and didn't really come round until late afternoon. She got another x-ray then, which again was fine.
Now that she has passed that first milestone she is able to begin going to the gym next week to start some more intensive rehab. The physio explained that her muscles will now give up before her lungs,so these need to be gradually built up as she slowly gets stronger.
Although most people expect that she just woke up and could breathe properly for the first time in years, it has not quite been like that. For most of the week she had felt just as breathless as previously and was really scared to trust that these new lungs would work. There are lots of new sensations to get used to and she feels that being able to breathe more deeply is a strange and often frightening experience. She is however now just starting to see the differences, such as the fact she can talk for longer without becoming breathless. Lucky us! She also understandably still feels apprehensive about the journey ahead and is just taking one day at a time at the moment. She just wanted me to explain this to everyone, so they can understand a little more of the emtional side of the journey, although I'm sure she will explain much more when she is back online herself.
Andrew
N.B Jac has been told that mobile phones cannot be used on the ward, so if she hasn't replied to any messages that is the reason. She is getting to read the comments here though and is really encouraged by them.
P.S. Jac actually wrote most of this!!
Thursday, May 01, 2008
Tx Update - Day 7 - Thursday 11pm
Today was busy and a lot of physical progress was made. Although still on a lot of pain meds having the chest drains out has made a huge difference.
The day started with the physio getting her onto an exercise bike for 3 minutes along with the usual arm and leg exercises. They will gradually keep increasing her level of exercise over the coming week.
Jac then insisted on having a shower since a week without washing her hair was really starting to bother her! This was a large and complex operation involving a nurse and her mum and not a great deal of privacy. She felt (and looked) so much better for it.
This afternoon was also busy with a trip to x-ray, there is still a small pleural effusion (fluid in the space around the lungs). The doctors don't seem too concerned as this is quite common. They will keep monitoring it as they do daily x-rays anyway. This was followed by a trip to lung function and despite the pain managed to blow 40% of normal lung volume!! That is double what her lung function was before the surgery and they would expect this to keep steadily improving over the next few months. She found this very reassuring because she has been finding breathing quite difficult (probably due to pain and having to relearn how to breathe with normal lungs).
Tomorrow will be another big day, she is getting her first routine bronch with a biopsy to look for any evidence of rejection or any other problems. This is her first major milestone post-transplant so fingers crossed that all goes well.
After such a busy day she is feeling overwhelmed emotionally by the whole experience. Hopefully she can get a good nights sleep before tomorrows activities begin.
Andrew
Today was busy and a lot of physical progress was made. Although still on a lot of pain meds having the chest drains out has made a huge difference.
The day started with the physio getting her onto an exercise bike for 3 minutes along with the usual arm and leg exercises. They will gradually keep increasing her level of exercise over the coming week.
Jac then insisted on having a shower since a week without washing her hair was really starting to bother her! This was a large and complex operation involving a nurse and her mum and not a great deal of privacy. She felt (and looked) so much better for it.
This afternoon was also busy with a trip to x-ray, there is still a small pleural effusion (fluid in the space around the lungs). The doctors don't seem too concerned as this is quite common. They will keep monitoring it as they do daily x-rays anyway. This was followed by a trip to lung function and despite the pain managed to blow 40% of normal lung volume!! That is double what her lung function was before the surgery and they would expect this to keep steadily improving over the next few months. She found this very reassuring because she has been finding breathing quite difficult (probably due to pain and having to relearn how to breathe with normal lungs).
Tomorrow will be another big day, she is getting her first routine bronch with a biopsy to look for any evidence of rejection or any other problems. This is her first major milestone post-transplant so fingers crossed that all goes well.
After such a busy day she is feeling overwhelmed emotionally by the whole experience. Hopefully she can get a good nights sleep before tomorrows activities begin.
Andrew
Wednesday, April 30, 2008
Tx Update - Day 6 - Wednesday 11:45pm
I thought the last blog was late but this is taking it a bit too far. I'm just back at my lovely NHS flat after making sure Jac was settled for the night, had all her drugs and everything she needed was within easy reach. I'll try to keep this brief, I need to sleep...
She's doing great today, some more important progress made. She did have a lot of pain overnight again last night which the docs were blaming on the remaining chest drains. These came out first thing this morning (2 large chest drains and a smaller wound drain) and her catheter as well. This gives her so much more mobility and just generally more comfortable. She's hardly got anything plugged into her at all now.
She then got a proper wash and got into her own pyjamas rather than a hospital gown, which is next to impossible to look dignified in.
We saw Shelley and her mum and they waved to Jac through the window. Shelley was looking really great so I think that helps Jac see what's possible in just a few weeks!
Physios were in again a couple of times, they are happy too. Mostly getting her to do arm and leg exercises as well as some deep breaths. This is all so so much easier now that the drains have gone. Main plan for the next few days is to keep getting her moving about as much as possible.
They are also slowing weaning Jac off the oxygen, sats are very good just now. She is also wearing the nasal canula instead of the face mask which allow her to talk more! Brilliant!
Her appetite is still not great, but then it never was. Hopefully start to see some improvement there soon.
Andrew
I thought the last blog was late but this is taking it a bit too far. I'm just back at my lovely NHS flat after making sure Jac was settled for the night, had all her drugs and everything she needed was within easy reach. I'll try to keep this brief, I need to sleep...
She's doing great today, some more important progress made. She did have a lot of pain overnight again last night which the docs were blaming on the remaining chest drains. These came out first thing this morning (2 large chest drains and a smaller wound drain) and her catheter as well. This gives her so much more mobility and just generally more comfortable. She's hardly got anything plugged into her at all now.
She then got a proper wash and got into her own pyjamas rather than a hospital gown, which is next to impossible to look dignified in.
We saw Shelley and her mum and they waved to Jac through the window. Shelley was looking really great so I think that helps Jac see what's possible in just a few weeks!
Physios were in again a couple of times, they are happy too. Mostly getting her to do arm and leg exercises as well as some deep breaths. This is all so so much easier now that the drains have gone. Main plan for the next few days is to keep getting her moving about as much as possible.
They are also slowing weaning Jac off the oxygen, sats are very good just now. She is also wearing the nasal canula instead of the face mask which allow her to talk more! Brilliant!
Her appetite is still not great, but then it never was. Hopefully start to see some improvement there soon.
Andrew
Tx Update - Day 6 - Wednesday 1pm
Jac still doing well today, all chest drains are now out as well as catheter. This will should help with the pain and make it easier for her to move around. I'll post more details later.
We've been getting lots of people asking for an address to send cards. Its ok to send a card but NO flowers or other gifts at the moment while she is so immuno suppressed (it seems balloons are ok but we've already got a room full! :)). The address is:
Ward 27A
Freeman Hospital
Freeman Road
High Heaton
Newcastle upon Tyne
NE7 7DN
Andrew
Jac still doing well today, all chest drains are now out as well as catheter. This will should help with the pain and make it easier for her to move around. I'll post more details later.
We've been getting lots of people asking for an address to send cards. Its ok to send a card but NO flowers or other gifts at the moment while she is so immuno suppressed (it seems balloons are ok but we've already got a room full! :)). The address is:
Ward 27A
Freeman Hospital
Freeman Road
High Heaton
Newcastle upon Tyne
NE7 7DN
Andrew
Tuesday, April 29, 2008
Transplant Update - Day 5 - Tuesday 11pm
These blogs are just getting later and later... Today has been very busy, lots of progress made.
She is now firmly installed on ward 27a (HDU) where she will stay for a good while yet.
Jac was given some nasal CPAP yesterday (forces air into the lungs to improve oxygen levels among other things) to see if this would help improve things before the bronchoscopy along with various nebulisers. This seemed to improve her blood gas results further. So much so in fact that the team had decided to hold off on the bronch (that's the slang name for it :)) until after an x-ray. After looking at the x-ray they then decided not to do a bronch at all as they were happy enough with the overall picture. Gases were good and also some doubt over whether fluid was in the lungs or in the space around them (which will be cleared by the chest drains anyway). This was good news.
While all this was going on the pain control has been worse overnight and early in the day due to the failure of the epidural which was just leaking. She is now onto oral pain relief (tramadol and oramorph). It took a while for the Pain Team to ramp up the doses until it started to take the edge off it. Around tea time they got it just about right and she was the brightest we have seen her since we got here. Sitting up, smiling (or rather cringing at her mum dancing round the room to "Workin' 9 to 5" on Jac's iPod). It was lovely to see her getting back to her old self.
And while all that was going on they removed the 2 upper chest drains. If you've never seen one they are most similar to a garden hose going through a largish hole in your chest into the space between your lungs. She has 4 of them. I think to say they are uncomfortable is an understatement. This is good progress because it gets her closer to being able to move around without things attached to her. Basically, they remove them once they have no more fluid left to drain. However, this evening she was getting a fair bit of pain from one of the sites where they had been removed. They were starting to get on top of it again before I left, her nurse for tonight was giving her a good dose of her pain meds. So hopefully she'll get a good sleep.
Andrew
These blogs are just getting later and later... Today has been very busy, lots of progress made.
She is now firmly installed on ward 27a (HDU) where she will stay for a good while yet.
Jac was given some nasal CPAP yesterday (forces air into the lungs to improve oxygen levels among other things) to see if this would help improve things before the bronchoscopy along with various nebulisers. This seemed to improve her blood gas results further. So much so in fact that the team had decided to hold off on the bronch (that's the slang name for it :)) until after an x-ray. After looking at the x-ray they then decided not to do a bronch at all as they were happy enough with the overall picture. Gases were good and also some doubt over whether fluid was in the lungs or in the space around them (which will be cleared by the chest drains anyway). This was good news.
While all this was going on the pain control has been worse overnight and early in the day due to the failure of the epidural which was just leaking. She is now onto oral pain relief (tramadol and oramorph). It took a while for the Pain Team to ramp up the doses until it started to take the edge off it. Around tea time they got it just about right and she was the brightest we have seen her since we got here. Sitting up, smiling (or rather cringing at her mum dancing round the room to "Workin' 9 to 5" on Jac's iPod). It was lovely to see her getting back to her old self.
And while all that was going on they removed the 2 upper chest drains. If you've never seen one they are most similar to a garden hose going through a largish hole in your chest into the space between your lungs. She has 4 of them. I think to say they are uncomfortable is an understatement. This is good progress because it gets her closer to being able to move around without things attached to her. Basically, they remove them once they have no more fluid left to drain. However, this evening she was getting a fair bit of pain from one of the sites where they had been removed. They were starting to get on top of it again before I left, her nurse for tonight was giving her a good dose of her pain meds. So hopefully she'll get a good sleep.
Andrew
Monday, April 28, 2008
Transplant Update - Day 4 - Monday 10pm
Sorry for the late update today. Today was very similar to yesterday she got up into her chair for a bit and tried to keep up the physio. She had a slightly better nights sleep so today was the first day that her eyes weren't trying to shut every five minutes. Pain control has also been a wee bit better, they moved the epidural this morning to a slightly different position on her back which seems to be blocking the pain more. She is still getting pain when coughing but is generally a little more comfortable, or as comfortable as you can be after that kind of surgery.
Blood gases were also slightly better today, they had actually been a bit border line yesterday so they had increased the amount of oxygen she was getting.
Also, she is being moved out of ITU to the HDU ward at some point this evening. I'll need to go along in the morning and see if I can find where they have moved her! So, in the broader picture everything is going well and she is about where they would expect her to be by now.
We have had our first small setback though. She is going to be given a bronchoscopy in the morning because there are some areas of consolidation on today's chest X-Ray. This basically means there is some fluid gathering in the bases of the lungs. This could be for a number of reasons. The most likely candidate at the moment is some early rejection of the new lungs. This is quite rare in the first week but always possible. Another possible cause is simply because she hasn't been able to breath deeply enough and cough properly because of the pain. Infection is the outsider at the moment. This isn't the end of the world. If it is rejection then that was guaranteed to happen at some point and can be treated. Similarly, if pain is the root of the problem they will get on top of it and give her help breathing deeper etc.
Jacqueline is a wee bit down about this and needs all your prayers, positive thoughts and wishes even more now.
I managed to show her all your comments today and it helped her a lot to read all the nice things people are saying. She also received the largest "bouquet" of helium balloons I have ever seen! thanks to Uncle H for that. We'll take it in for her tomorrow when she moves to the other ward.
Andrew
Sorry for the late update today. Today was very similar to yesterday she got up into her chair for a bit and tried to keep up the physio. She had a slightly better nights sleep so today was the first day that her eyes weren't trying to shut every five minutes. Pain control has also been a wee bit better, they moved the epidural this morning to a slightly different position on her back which seems to be blocking the pain more. She is still getting pain when coughing but is generally a little more comfortable, or as comfortable as you can be after that kind of surgery.
Blood gases were also slightly better today, they had actually been a bit border line yesterday so they had increased the amount of oxygen she was getting.
Also, she is being moved out of ITU to the HDU ward at some point this evening. I'll need to go along in the morning and see if I can find where they have moved her! So, in the broader picture everything is going well and she is about where they would expect her to be by now.
We have had our first small setback though. She is going to be given a bronchoscopy in the morning because there are some areas of consolidation on today's chest X-Ray. This basically means there is some fluid gathering in the bases of the lungs. This could be for a number of reasons. The most likely candidate at the moment is some early rejection of the new lungs. This is quite rare in the first week but always possible. Another possible cause is simply because she hasn't been able to breath deeply enough and cough properly because of the pain. Infection is the outsider at the moment. This isn't the end of the world. If it is rejection then that was guaranteed to happen at some point and can be treated. Similarly, if pain is the root of the problem they will get on top of it and give her help breathing deeper etc.
Jacqueline is a wee bit down about this and needs all your prayers, positive thoughts and wishes even more now.
I managed to show her all your comments today and it helped her a lot to read all the nice things people are saying. She also received the largest "bouquet" of helium balloons I have ever seen! thanks to Uncle H for that. We'll take it in for her tomorrow when she moves to the other ward.
Andrew
Sunday, April 27, 2008
Transplant update - Day 3 - Sunday 10:30pm
Here she is! She was in a bit of pain when we took the photo but she was trying very hard to smile for everyone.
Basically today has been about starting to mobilise her. She was moved into a chair for a few hours and the physios were in to get her to do breathing exercises, deep breaths and coughs to try to clear any secretions that are gathering in her chest. She's been finding this difficult for a number of reasons; pain, dry cough and generally quite weak. She really has to learn how to cough all over again, something she was actually very good at before the tx, which probably makes it more frustrating!
They were also encouraging her to try to eat by offering her soup or similar things. That wasn't good enough for Jac though so she asked "Can I have some ice cream instead?" Fair enough!
The pain has been an issue for most of the day though. The epidural block seems to be very positional, its just very difficult to find the right position where its blocking all of the pain pathways. This seems to be what happened last night, she rolled flat onto her back, off her right side, and almost immediately her left leg went numb from the epidural and pretty quickly the pain in her chest subsided. They were upping the dose of the drug they put through it to see if that would help as well. Just spoke to the ward and the pain seems to be better tonight again, which should help her get some sleep.
Also, they were going to move her out of ITU and into HDU (high dependency) but there were no beds available. This is yet another sign of how pleased they are with her progress.
Andrew
Tx update - sun 8pm
Another random pic from my phone...
Jac still progressing well, she was up out of bed and into a chair today. She even managed to eat a wee bit of ice cream!
Pain is still a prob though, epidural just sometimes seems to stop working. They are giving her a wee boost of drugs just now. Will post again later with more details.
Andrew
Saturday, April 26, 2008
Tx Update - Day 2 - Saturday 11pm
I now have a fairly decent internet connection thanks to my very kind employers who posted me out a company SIM card so I can use my 3G data card with my laptop (it's not HSDPA but it does the job). Sorry, had to get a wee geeky bit in there.
Jac still progressing well, she was extubated this afternoon and is now only wearing an oxygen mask. Oxygen saturations are excellent, hovering around 99% - 100%. All blood gas tests are coming back great as well, this looks like a good set of puffers.
She now has the epidural in as well which is intended to block all pain from her chest in the initial
stages of her recovery. However, this wasn't working very well this afternoon and evening and she has been experiencing a fair bit of pain and discomfort, even after increasing the dose. Just as we were leaving though they repositioned her onto her back and this seemed to magically get the epidural working! Just phoned through to the room and they seem to have the pain much more under control. All she needs now is a good nights sleep.
So, the plan now is to get her out of the bed tomorrow, start getting her moving about with a view to moving out of ITU sometime in the coming days.
Heres hoping this excellent recovery can just keep on going!
Andrew
I now have a fairly decent internet connection thanks to my very kind employers who posted me out a company SIM card so I can use my 3G data card with my laptop (it's not HSDPA but it does the job). Sorry, had to get a wee geeky bit in there.
Jac still progressing well, she was extubated this afternoon and is now only wearing an oxygen mask. Oxygen saturations are excellent, hovering around 99% - 100%. All blood gas tests are coming back great as well, this looks like a good set of puffers.
She now has the epidural in as well which is intended to block all pain from her chest in the initial
stages of her recovery. However, this wasn't working very well this afternoon and evening and she has been experiencing a fair bit of pain and discomfort, even after increasing the dose. Just as we were leaving though they repositioned her onto her back and this seemed to magically get the epidural working! Just phoned through to the room and they seem to have the pain much more under control. All she needs now is a good nights sleep.
So, the plan now is to get her out of the bed tomorrow, start getting her moving about with a view to moving out of ITU sometime in the coming days.
Heres hoping this excellent recovery can just keep on going!
Andrew
Transplant update - sat 2pm
Apologies for the random picture, my phone will only blog with a picture :)
Jac doing good today, she is awake now and breathing on her own. She is still intubated so can't talk yet (which is a big problem for jac!) Lungs are working well and everything still going great. They are hoping to extubate later today.
Andrew
Friday, April 25, 2008
Transplant Update - Day 1 - Friday 7pm
Jac is now out of surgery and into ITU. She is looking good and doing well so far. There is such a long way to go though. The plan now is to keep her sedated overnight and then look at bringing her round in the morning.
We are all trying to recover a bit now as well and wait for what tomorrow brings.
Also, wanted to say thanks very much for all the wonderful messages of support we have received it really does help more than you can imagine.
I'll keep trying to post these regular updates this week because it's what Jac would do :)
Andrew
Jac is now out of surgery and into ITU. She is looking good and doing well so far. There is such a long way to go though. The plan now is to keep her sedated overnight and then look at bringing her round in the morning.
We are all trying to recover a bit now as well and wait for what tomorrow brings.
Also, wanted to say thanks very much for all the wonderful messages of support we have received it really does help more than you can imagine.
I'll keep trying to post these regular updates this week because it's what Jac would do :)
Andrew
The Transplant
Jac's husband here, quick update (from my mobile) Jac is in surgery at newcastle finally getting her transplant.
The call came at 3:45 am, flew down again (this was the sunrise we saw from the plane) She went into theatre about 10:00. Lungs should be here shortly!
I'll try to keep posting updates here but apologies in advance if i don't.
Andrew
Tuesday, April 22, 2008
The Wedding
Well, I have just about recovered from the wedding - it was a great weekend and I had a lovely time. I was a bit stressed trying to get packed on Friday - not only deciding what clothes to take, but trying to make sure I had packed all my regular medication, IV antibiotics, oxygen concentrator and portable cylinders and another list of things we would need should I get 'the call' over the weekend. The car boot looked like we had packed for a fortnight instead of a weekend, but we got there in the end.
We arrived in time for the BBQ, and it was a nice relaxed evening, giving everyone a chance to catch up before the big day itself. For those who don't know, the bride was my university flat mate Anna, who I met on my first day in halls of residence and shared a flat with for the rest of university. We basically lived in a big town house at uni - there were 4 girls in the basement, including me, and 6 boys upstairs, including Andrew. We called it "The Flat" and it was a strange set up I suppose, with so many of us sharing, but it did mean there was always someone to talk to, and plenty of socialising. Anyway, all our flatmates were invited to the wedding, so it was great to catch up with everyone and it felt like old times.
The wedding itself was on the Saturday. I was so glad we were staying at the hotel, as it gave me plenty time to get organised before we headed off to the church. The service was lovely, with Anna's mum singing a beautiful psalm and her bridesmaid playing a solo on the flute. Afterwards, we all went back to the hotel for some drinks before the meal in the evening. The meal was lovely, and despite having a poor appetite at the moment, I cleared my plate without difficulty (Andrew was disappointed because I usually leave some for him). After the meal, there was a ceilidh band, and although I obviously couldn't dance, I enjoyed watching everyone else making a complete fool of themselves and the music was excellent. To top of a lovely evening there was a firework display in the grounds of the hotel, which finished the day on a high note.
On the Sunday, we were all invited over to Anna's mum's house for a buffet lunch, so it was a nice chance to chat about the wedding and start to unwind. The wedding was very close to where Andrew's parents live, so we popped in for a coffee before heading back up the road, collecting Seb from his granny's on the way. He looked mildly pleased to see us, but wasn't really that fussed about coming home. Charming.
Yesterday and today have been spent recuperating, which is a nice way of saying, I have not moved from the sofa. I feel that the IV's are starting to work now and my chest is getting clearer, so fingers crossed that this course will set me back on the right track. I still have almost a whole week left, so plenty time to see even more improvement. I have increased the dose of the weight inducing medication again, so have started putting weight back on, and certainly don't even look as if I lost any at all now. The headaches I was getting in the mornings have also cleared up, so my lungs are obviously feeling a bit happier now. Long may it continue...
I will leave you with a couple of photos from the weekend..
Me and Andrew
Well, I have just about recovered from the wedding - it was a great weekend and I had a lovely time. I was a bit stressed trying to get packed on Friday - not only deciding what clothes to take, but trying to make sure I had packed all my regular medication, IV antibiotics, oxygen concentrator and portable cylinders and another list of things we would need should I get 'the call' over the weekend. The car boot looked like we had packed for a fortnight instead of a weekend, but we got there in the end.
We arrived in time for the BBQ, and it was a nice relaxed evening, giving everyone a chance to catch up before the big day itself. For those who don't know, the bride was my university flat mate Anna, who I met on my first day in halls of residence and shared a flat with for the rest of university. We basically lived in a big town house at uni - there were 4 girls in the basement, including me, and 6 boys upstairs, including Andrew. We called it "The Flat" and it was a strange set up I suppose, with so many of us sharing, but it did mean there was always someone to talk to, and plenty of socialising. Anyway, all our flatmates were invited to the wedding, so it was great to catch up with everyone and it felt like old times.
The wedding itself was on the Saturday. I was so glad we were staying at the hotel, as it gave me plenty time to get organised before we headed off to the church. The service was lovely, with Anna's mum singing a beautiful psalm and her bridesmaid playing a solo on the flute. Afterwards, we all went back to the hotel for some drinks before the meal in the evening. The meal was lovely, and despite having a poor appetite at the moment, I cleared my plate without difficulty (Andrew was disappointed because I usually leave some for him). After the meal, there was a ceilidh band, and although I obviously couldn't dance, I enjoyed watching everyone else making a complete fool of themselves and the music was excellent. To top of a lovely evening there was a firework display in the grounds of the hotel, which finished the day on a high note.
On the Sunday, we were all invited over to Anna's mum's house for a buffet lunch, so it was a nice chance to chat about the wedding and start to unwind. The wedding was very close to where Andrew's parents live, so we popped in for a coffee before heading back up the road, collecting Seb from his granny's on the way. He looked mildly pleased to see us, but wasn't really that fussed about coming home. Charming.
Yesterday and today have been spent recuperating, which is a nice way of saying, I have not moved from the sofa. I feel that the IV's are starting to work now and my chest is getting clearer, so fingers crossed that this course will set me back on the right track. I still have almost a whole week left, so plenty time to see even more improvement. I have increased the dose of the weight inducing medication again, so have started putting weight back on, and certainly don't even look as if I lost any at all now. The headaches I was getting in the mornings have also cleared up, so my lungs are obviously feeling a bit happier now. Long may it continue...
I will leave you with a couple of photos from the weekend..
The Happy Couple!
Me and Andrew
Thursday, April 17, 2008
Back on the List
I had my bloods checked today again and the results were a little confusing. My white cell count (WCC), which indicates infection, had risen since Monday (from 22 to 29 for any medical people), but my CRP, which reflects acute infection and inflammation, had fallen significantly (from 125 to 36). To confuse things further, I was started on a course of steroids on Monday, which can artificially raise your white cell count, which probably explains the conflicting results.
I have spoken to the transplant coordinator, who agreed that the WCC was probably higher because of the steroids, and also they will take into account the fact that my WCC is almost permanently raised anyway, due to chronic infection. She was reassured by the fact my temperature had settled and I am otherwise improving on the IV's. So the upshot is that should some suitable lungs become available in the immediate future, I would at least be considered and the transplant team would assess me themselves to check I was fit enough for surgery. That's as good an outcome as I could hope for :-)
Apart from a couple of hospital visits, I did have quite a good birthday week and managed to spend all my birthday money in about the space of an hour. We took the wheelchair on a wee trip to the shops for a couple of hours, and I bought some new tops and an umbrella with pink flamingoes. Andrew says he won't be carrying it for me under any circumstances. Sadly however the birthday week has come to its end and mum made me take all my cards down today. I am still refusing however to take down the (now wrinkled) helium balloons I was sent in the hospital. I think there's still a good week left in them yet..
Wee Seb is being shipped off to his Granny's again this weekend, as we are going to a friends wedding. It's a whole weekend of celebrations with a BBQ on the Friday, wedding on the Saturday and lunch on Sunday. I'm hoping I will be feeling ok, but since we are staying at the hotel I can at least have a rest whenever needed and will be taking my oxygen concentrator to have in the room with me. I am really looking forward to the weekend, especially since there will lots of friends there that I haven't seen for ages. I think a good catch up with friends could be just what the doctor ordered.
I had my bloods checked today again and the results were a little confusing. My white cell count (WCC), which indicates infection, had risen since Monday (from 22 to 29 for any medical people), but my CRP, which reflects acute infection and inflammation, had fallen significantly (from 125 to 36). To confuse things further, I was started on a course of steroids on Monday, which can artificially raise your white cell count, which probably explains the conflicting results.
I have spoken to the transplant coordinator, who agreed that the WCC was probably higher because of the steroids, and also they will take into account the fact that my WCC is almost permanently raised anyway, due to chronic infection. She was reassured by the fact my temperature had settled and I am otherwise improving on the IV's. So the upshot is that should some suitable lungs become available in the immediate future, I would at least be considered and the transplant team would assess me themselves to check I was fit enough for surgery. That's as good an outcome as I could hope for :-)
Apart from a couple of hospital visits, I did have quite a good birthday week and managed to spend all my birthday money in about the space of an hour. We took the wheelchair on a wee trip to the shops for a couple of hours, and I bought some new tops and an umbrella with pink flamingoes. Andrew says he won't be carrying it for me under any circumstances. Sadly however the birthday week has come to its end and mum made me take all my cards down today. I am still refusing however to take down the (now wrinkled) helium balloons I was sent in the hospital. I think there's still a good week left in them yet..
Wee Seb is being shipped off to his Granny's again this weekend, as we are going to a friends wedding. It's a whole weekend of celebrations with a BBQ on the Friday, wedding on the Saturday and lunch on Sunday. I'm hoping I will be feeling ok, but since we are staying at the hotel I can at least have a rest whenever needed and will be taking my oxygen concentrator to have in the room with me. I am really looking forward to the weekend, especially since there will lots of friends there that I haven't seen for ages. I think a good catch up with friends could be just what the doctor ordered.
Monday, April 14, 2008
Well, I am writing this from home (yay!) although I did have to change to IV antibiotics today. My infection markers are still quite high, plus I have developed terrible headaches which wake me in the early hours of the morning. These are likely to be related to high carbon dioxide levels overnight, so is a sign that my lungs are struggling somewhat. I am using my oxygen 24/7 at the moment but hopefully can reduce this down when my infection has cleared up. Thankfully the doc agreed that I was fit enough to do my IV's at home, so I will just pop up later in the week to get my bloods rechecked, and hopefully it wont be too long before I am back on the active list.
It was interesting to find out today that the transplant team had been discussing my post op pain management with the CF team. They had been a little concerned that the pain seemed non responsive to some standard treatments, so have been considering alternative drugs they could use post transplant. Personally I think the main issue was that I had to continue doing regular physiotherapy for my CF with a wound across my chest - this was clearly exacerbating the pain, as was coughing in general. After a transplant I wont have dodgy lungs any more, so this should not be a great problem. Either way, it's good to hear that they were listening to me when I said it was 'still sore' and hopefully next time round they will have some tricks up their sleeves if I am struggling at all.
On a positive note, I did have a lovely 'birthday weekend'. I had some friends over on Saturday for a catch up, and bite to eat. Luckily mum was here on Friday and had pre-prepared everything for me, so I didn't have to really lift a finger all day, and Andrew was there to pour drinks, dish up the food and do all the clearing up. There are some perks to being ill. On Sunday my good friend Fi came to visit (with her lovely dog who ate all Sebs chew sticks haha!) Later in the afternoon another friend popped in with a birthday present for me, so all in all I had a lovely weekend and was thoroughly spoilt.
In my opinion everyone should have a 'birthday week' so I still have several days left of pampering. I don't take my cards down for an entire week either - I think you should be able to enjoy them for more than one day. So, on that note I am away to put my feet up and relax...
It was interesting to find out today that the transplant team had been discussing my post op pain management with the CF team. They had been a little concerned that the pain seemed non responsive to some standard treatments, so have been considering alternative drugs they could use post transplant. Personally I think the main issue was that I had to continue doing regular physiotherapy for my CF with a wound across my chest - this was clearly exacerbating the pain, as was coughing in general. After a transplant I wont have dodgy lungs any more, so this should not be a great problem. Either way, it's good to hear that they were listening to me when I said it was 'still sore' and hopefully next time round they will have some tricks up their sleeves if I am struggling at all.
On a positive note, I did have a lovely 'birthday weekend'. I had some friends over on Saturday for a catch up, and bite to eat. Luckily mum was here on Friday and had pre-prepared everything for me, so I didn't have to really lift a finger all day, and Andrew was there to pour drinks, dish up the food and do all the clearing up. There are some perks to being ill. On Sunday my good friend Fi came to visit (with her lovely dog who ate all Sebs chew sticks haha!) Later in the afternoon another friend popped in with a birthday present for me, so all in all I had a lovely weekend and was thoroughly spoilt.
In my opinion everyone should have a 'birthday week' so I still have several days left of pampering. I don't take my cards down for an entire week either - I think you should be able to enjoy them for more than one day. So, on that note I am away to put my feet up and relax...
Friday, April 11, 2008
I've only been back on the active transplant list for a week and now now I'm off it again :-( I've been spiking temperatures for a couple of days, so went to get checked out at the hospital today. It's likely to be my chest (despite having just finished IV's less than a week ago) but they have also taken swabs from my wound just to ensure it's not a wound infection. I had to get some blood tests taken to measure my infection markers, and unfortunately these have come back as higher than Newcastle are happy with. After a transplant your immune system is suppressed to prevent rejection, so it would be dangerous to operate when I had an active infection. So for the time being I am not on the active list, until this infection is more under control. I have started some oral antibiotics just now, although I may have to change to IV's on Monday if things aren't settling. The doctor did phone and offer me admission after they had seen the blood results, but I felt we should give the orals a try first and I have the option of being admitted over the weekend if I get any worse. Keep your fingers and toes crossed that these antibiotics work.
On a positive note, its my birthday today :-) I am 29 years young - big party will be had next year. I've had my main birthday present (the ipod) since last week, but still had lots of other nice things to open. My friends are coming over tomorrow (another reason I didn't want to be admitted!) so hopefully a lovely day is in store. Seb has been shipped off to his granny's because last time my friends came over he was found munching on the pavlova left on the dining room table. He has no manners.
I will update on Monday and hopefully it won't be from a hospital bed!
On a positive note, its my birthday today :-) I am 29 years young - big party will be had next year. I've had my main birthday present (the ipod) since last week, but still had lots of other nice things to open. My friends are coming over tomorrow (another reason I didn't want to be admitted!) so hopefully a lovely day is in store. Seb has been shipped off to his granny's because last time my friends came over he was found munching on the pavlova left on the dining room table. He has no manners.
I will update on Monday and hopefully it won't be from a hospital bed!
Sunday, April 06, 2008
The Dress Rehearsal - Final Part
I spent almost a week in Gartnavel hospital getting my chest back into shape, and allowing me some time to get myself strong enough for discharge home. As soon as I was feeling better I was keen to get home and finish my IV antibiotics there - I think the fact I had already packed my case before the doctors ward round allowed them little choice in the matter. I was so pleased to get home and back to my own bed...and of course, to see wee Seb. I was treated to a few excited tail wags, as opposed to the usual cold shoulder treatment, so maybe even he knew I was in need of some TLC.
I began to feel much better now that I was back home, and my thinking became clearer. Despite the infection being under control I wasn't allowed to go back on the transplant list until yesterday due to a certain antibiotic I was on (apparently this is my 'reserve' drug for any post transplant chests infections, so I cannot be transplanted while on it). It was probably helpful that I had the week to get myself organised - even just the practical things like repacking my 'Newcastle case' and buying some extra items we realised might have been useful. It also gave me a chance to let the dust settle, so to speak, and get myself psychologically prepared for round two.
I find it easier to cope when I can see the silver lining so have spent some time thinking about what positives I can take from what I am now calling my 'pretend transplant':-
p.s I have no idea why this keeps changing font and text size...I wasn't trying to be arty or anything ;-)
I spent almost a week in Gartnavel hospital getting my chest back into shape, and allowing me some time to get myself strong enough for discharge home. As soon as I was feeling better I was keen to get home and finish my IV antibiotics there - I think the fact I had already packed my case before the doctors ward round allowed them little choice in the matter. I was so pleased to get home and back to my own bed...and of course, to see wee Seb. I was treated to a few excited tail wags, as opposed to the usual cold shoulder treatment, so maybe even he knew I was in need of some TLC.
I began to feel much better now that I was back home, and my thinking became clearer. Despite the infection being under control I wasn't allowed to go back on the transplant list until yesterday due to a certain antibiotic I was on (apparently this is my 'reserve' drug for any post transplant chests infections, so I cannot be transplanted while on it). It was probably helpful that I had the week to get myself organised - even just the practical things like repacking my 'Newcastle case' and buying some extra items we realised might have been useful. It also gave me a chance to let the dust settle, so to speak, and get myself psychologically prepared for round two.
I find it easier to cope when I can see the silver lining so have spent some time thinking about what positives I can take from what I am now calling my 'pretend transplant':-
- Although I have been waiting almost 2 years, I still never really believed that the call would ever come. A call did come - this means they were thinking of me and a match is possible. Often a second call will come soon after a false alarm, so for the first time the possibility of transplant seems real. For the time being, my fear of 'time running out' has been quelled.
- I seriously doubt the transplant team will forget about me in a hurry - this can only be a good thing.
- Even worse than what happened, would have been waking up with transplanted lungs that failed. I am forever grateful that the team realised in time and did what was best for me at that time.
- I now know what to expect - right up to the point of waking up in ITU. This means I'm about as prepared as anyone could be now.
- Even if I were to get another false alarm, the disappointment could never be as bad.
- The surgeon doesn't even have to know where to cut - he has a wee line to follow. I have toyed with the idea of tattooing on a small pair of scissors to indicate 'cut along this line' but I'm sure he will work it out.
- I now absolutely realise the importance of being at an optimal weight and physically as fit as possible, in order to recover well post op. I don't think I had ever given this enough credence before.
- I realised I had not packed enough clothes for a lengthy stay. My family realised they had not packed anything in advance and were all forced to visit the local Matalan to buy pants and socks. We will all be better prepared next time.
- Andrew's work now understand that he was serious about having to leave at short notice. They wont ask him to go on any work trips down south again.
- I have managed to convince Andrew that I required both an ipod and expensive headphones (I can't wear those in ear thingies) because it would be useful to have some relaxing music to help me sleep. Although its my birthday next week, these items had to be purchased this week ....just in case.
p.s I have no idea why this keeps changing font and text size...I wasn't trying to be arty or anything ;-)
Wednesday, April 02, 2008
The Dress Rehearsal - Part 3
It was not long before I was stable enough to be moved back to the surgical ward. Amusingly when they went to collect my bed from the ward, they found my mum fast asleep on it. She awoke to the voices of two nurses outside the door speaking in hushed tones "There's someone in the bed!" "What will we do?!" Fortunately roused from sleep by this point she was able to reassure them that she was a relative and not some delirious patient who had just wandered into the wrong room.
I had been given a PCA (patient controlled analgesia) in ITU, which is basically a morphine pump which delivers the drug when you press a button. This kept me fairly comfortable for the first 24 hours back on the ward and I was even able to be helped out of the bed and into a chair for a few minutes by a rather enthusiastic physiotherapist, who insisted I had to be mobilised as soon as possible. At this point in time I was more concerned with the issue of my bare bottom peeking out the back of the hospital gown than I was with the pain of sitting up and getting out of bed, so I duly complied. It was extremely uncomfortable to move and I pressed the PCA button a few times to ease the pain. More of a distraction however, was the physiotherapist himself, who clearly used to mobilising people with tubes in every orifice, casually hooked my catheter bag onto the belt of his trousers as it were some stylish accessory. After a few minutes in the chair he allowed me to climb back into the comfort of the bed.
Towards the end of that first day I appeared to become very drowsy, and thinking it was related to the morphine, the pain team decided to remove the PCA and replace it with oral medication, including oral morphine if needed. For the rest of the evening this seemed to be working well enough and I settled down to sleep. I then awoke at 3am and the pain was unbearable. I lay there thinking "if this is the pain from a superficial wound then I will never cope with the real thing."I buzzed for a nurse and was given some tablets - I looked at them helplessly and thought 'these are never going to work!" Over the next few hours I was given various tablets and finally some oral morphine. I expected it to hit the mark but it did little to ease the pain, so being allowed to have it every hour, every hour on the hour I buzzed and asked for more hoping this time it might work. By morning I was in floods of tears pleading with the nurse to please get the pain team to come back - but they were very helpfully on holiday for the Easter weekend! After the ward round however they called an anaesthetist, who came and set me back up with the PCA. By this point I had had enough oral morphine to floor a small horse and was not remotely drowsy, so the anaesthetist explained that my drowsiness the previous day was due to drugs I was given in theatre, and not related to morphine. Finally I had control of the pain again and this eased things greatly.
Despite the better pain relief, it was inevitably still painful to cough which made clearing my chest very difficult indeed. This was made worse again by the Easter holiday weekend, since the on call physios were not familiar with some of the chest clearance techniques I use - so I pretty much had to take care of my own physio. This was something that required a good bit of will power but I knew I had to keep my chest as clear as possible so worked hard on this. However despite my best efforts the infection markers in my blood had started to rise, and it was clear that I now had a chest infection to deal with. Thankfully the transplant team were quick to act and started IV antibiotics straight away in an attempt to keep things under control. Unfortunately this chest infection meant I was now unfit for further surgery had another pair of lungs become available. I was understandanly upset by this at first, as I had almost hoped that by some will of God another call would come before I had even left Newcastle. In retrospect however, it was the best decision that could have been made. I needed time to deal with what had just happened - both on a physical and emotional level.
The next few days passed in a haze of morphine, as I continued to press the PCA button on a regular basis. We were in unprecedented territory pain wise, as they had never encountered someone who had exactly the same wound as my self - it wasn't half as bad as a post transplant wound (although you have an epidural in this case), but pretty sore all the same. Over those few days I had little to say - I didn't really want to talk about what had just happened, all I wanted was for the pain to go away and to go home. I had company all the time, as my husband and parents stayed with me, yet at times I felt alone and so far from home. As those first few days passed and the reality of what had happened began to slowly sink in, thoughts fluttered aimlessly in my mind and I found it hard to concentrate. The doctors kept reassuring me "you will get your transplant - it will happen" and suddenly I was filled with fear. I wasn't even sure I wanted a transplant any more - if I was struggling to cope with a superficial wound and some post op chest infection, how would I ever cope with the real thing? I tried to imagine the phone ringing again, and the coordinator saying to me "we have some lungs". Those words which would have previously filled me with joy, were now associated with fear and pain. Transplant had always been such a distant thought - something that may never even come in time and was perhaps only a fairy tale to chase. Now it felt so real - yet in reality it remained only a hope. The dichotomy of this situation - the being so close, yet remaining so far, was hard to process.
As the days passed and the end of a week became near, I focused on the physical aspect of getting better. We finally swapped the PCA for some oral medications and I coped well with this. I went for a walk along the corridor to prove to physio's and doctors that I was now 'mobilised'. The wound was healing well and all the dressings were removed so I could now shower freely. All in all, I was making a remarkable recovery and astounded everyone with my progress. Although I lost around 1/2 stone in those first few days, due to my recent weight gain I was still at a satisfactory weight for transplant and everything looked good.
A week after the surgery it was decided that I was fit for transfer to my hospital back home, where they could look after my chest more effectively. I felt very unwell on the journey back home - my heart was racing, I felt nauseas, disorientated, and feeling very hot I insisted on all windows being open in the car. It was snowing outside and my family had to put coats and hats for the duration of the 3 1/2 hour journey. On arrival at my hospital I was met by one of my physios and CF nurse - I have never felt so relieved to be in that hospital and for the first time in a week I broke down in floods of tears. There was much hugging from hospital staff and I was ushered into a familiar room, treated by familiar nurses and felt so much better for it. I was however still very agitated at this time and it was assumed that all my symptoms (the palpitations, nausea etc) were related to anxiety. However it later transpired that they were side effects of my pain medication and I felt like a different person when I stopped them - so much calmer and with clarity of thought (It was useful to find this out as I can ask to avoid those tablets post real transplant). I was so relieved to find out that it was the medication, as at several points I did begin to wonder if I was losing my mind.
Back in familiar surroundings, I improved rapidly. With the expert help of CF physios I could work hard on getting my chest back into shape, and now removed from the situation, I could stand back and begin to process the whole episode. As time passed, my anxieties began to melt away and I could regain some objectivity. I did want a transplant. Of course I did. I could now think of the real call without fear - I could imagine taking this journey again but this time the ending would be so different. I began to feel ready for the next time.
More to follow.. (nearly finished I promise!)
It was not long before I was stable enough to be moved back to the surgical ward. Amusingly when they went to collect my bed from the ward, they found my mum fast asleep on it. She awoke to the voices of two nurses outside the door speaking in hushed tones "There's someone in the bed!" "What will we do?!" Fortunately roused from sleep by this point she was able to reassure them that she was a relative and not some delirious patient who had just wandered into the wrong room.
I had been given a PCA (patient controlled analgesia) in ITU, which is basically a morphine pump which delivers the drug when you press a button. This kept me fairly comfortable for the first 24 hours back on the ward and I was even able to be helped out of the bed and into a chair for a few minutes by a rather enthusiastic physiotherapist, who insisted I had to be mobilised as soon as possible. At this point in time I was more concerned with the issue of my bare bottom peeking out the back of the hospital gown than I was with the pain of sitting up and getting out of bed, so I duly complied. It was extremely uncomfortable to move and I pressed the PCA button a few times to ease the pain. More of a distraction however, was the physiotherapist himself, who clearly used to mobilising people with tubes in every orifice, casually hooked my catheter bag onto the belt of his trousers as it were some stylish accessory. After a few minutes in the chair he allowed me to climb back into the comfort of the bed.
Towards the end of that first day I appeared to become very drowsy, and thinking it was related to the morphine, the pain team decided to remove the PCA and replace it with oral medication, including oral morphine if needed. For the rest of the evening this seemed to be working well enough and I settled down to sleep. I then awoke at 3am and the pain was unbearable. I lay there thinking "if this is the pain from a superficial wound then I will never cope with the real thing."I buzzed for a nurse and was given some tablets - I looked at them helplessly and thought 'these are never going to work!" Over the next few hours I was given various tablets and finally some oral morphine. I expected it to hit the mark but it did little to ease the pain, so being allowed to have it every hour, every hour on the hour I buzzed and asked for more hoping this time it might work. By morning I was in floods of tears pleading with the nurse to please get the pain team to come back - but they were very helpfully on holiday for the Easter weekend! After the ward round however they called an anaesthetist, who came and set me back up with the PCA. By this point I had had enough oral morphine to floor a small horse and was not remotely drowsy, so the anaesthetist explained that my drowsiness the previous day was due to drugs I was given in theatre, and not related to morphine. Finally I had control of the pain again and this eased things greatly.
Despite the better pain relief, it was inevitably still painful to cough which made clearing my chest very difficult indeed. This was made worse again by the Easter holiday weekend, since the on call physios were not familiar with some of the chest clearance techniques I use - so I pretty much had to take care of my own physio. This was something that required a good bit of will power but I knew I had to keep my chest as clear as possible so worked hard on this. However despite my best efforts the infection markers in my blood had started to rise, and it was clear that I now had a chest infection to deal with. Thankfully the transplant team were quick to act and started IV antibiotics straight away in an attempt to keep things under control. Unfortunately this chest infection meant I was now unfit for further surgery had another pair of lungs become available. I was understandanly upset by this at first, as I had almost hoped that by some will of God another call would come before I had even left Newcastle. In retrospect however, it was the best decision that could have been made. I needed time to deal with what had just happened - both on a physical and emotional level.
The next few days passed in a haze of morphine, as I continued to press the PCA button on a regular basis. We were in unprecedented territory pain wise, as they had never encountered someone who had exactly the same wound as my self - it wasn't half as bad as a post transplant wound (although you have an epidural in this case), but pretty sore all the same. Over those few days I had little to say - I didn't really want to talk about what had just happened, all I wanted was for the pain to go away and to go home. I had company all the time, as my husband and parents stayed with me, yet at times I felt alone and so far from home. As those first few days passed and the reality of what had happened began to slowly sink in, thoughts fluttered aimlessly in my mind and I found it hard to concentrate. The doctors kept reassuring me "you will get your transplant - it will happen" and suddenly I was filled with fear. I wasn't even sure I wanted a transplant any more - if I was struggling to cope with a superficial wound and some post op chest infection, how would I ever cope with the real thing? I tried to imagine the phone ringing again, and the coordinator saying to me "we have some lungs". Those words which would have previously filled me with joy, were now associated with fear and pain. Transplant had always been such a distant thought - something that may never even come in time and was perhaps only a fairy tale to chase. Now it felt so real - yet in reality it remained only a hope. The dichotomy of this situation - the being so close, yet remaining so far, was hard to process.
As the days passed and the end of a week became near, I focused on the physical aspect of getting better. We finally swapped the PCA for some oral medications and I coped well with this. I went for a walk along the corridor to prove to physio's and doctors that I was now 'mobilised'. The wound was healing well and all the dressings were removed so I could now shower freely. All in all, I was making a remarkable recovery and astounded everyone with my progress. Although I lost around 1/2 stone in those first few days, due to my recent weight gain I was still at a satisfactory weight for transplant and everything looked good.
A week after the surgery it was decided that I was fit for transfer to my hospital back home, where they could look after my chest more effectively. I felt very unwell on the journey back home - my heart was racing, I felt nauseas, disorientated, and feeling very hot I insisted on all windows being open in the car. It was snowing outside and my family had to put coats and hats for the duration of the 3 1/2 hour journey. On arrival at my hospital I was met by one of my physios and CF nurse - I have never felt so relieved to be in that hospital and for the first time in a week I broke down in floods of tears. There was much hugging from hospital staff and I was ushered into a familiar room, treated by familiar nurses and felt so much better for it. I was however still very agitated at this time and it was assumed that all my symptoms (the palpitations, nausea etc) were related to anxiety. However it later transpired that they were side effects of my pain medication and I felt like a different person when I stopped them - so much calmer and with clarity of thought (It was useful to find this out as I can ask to avoid those tablets post real transplant). I was so relieved to find out that it was the medication, as at several points I did begin to wonder if I was losing my mind.
Back in familiar surroundings, I improved rapidly. With the expert help of CF physios I could work hard on getting my chest back into shape, and now removed from the situation, I could stand back and begin to process the whole episode. As time passed, my anxieties began to melt away and I could regain some objectivity. I did want a transplant. Of course I did. I could now think of the real call without fear - I could imagine taking this journey again but this time the ending would be so different. I began to feel ready for the next time.
More to follow.. (nearly finished I promise!)
The Dress Rehearsal - Part 2
The words filtered through the haze of anaesthetic drugs and in my confusion my first thought was 'are you joking, because that's not very funny'. As he carefully repeated the words "You have NOT had a transplant" the words slowly sunk in and I realised that this was no joke. My eyes opened wide in utter disbelief, and tears began to silently fall. I was still intubated so could not speak, and instead lay in the silence that followed. My mum was wiping my tears, and Andrew was holding my hand. At that moment in time it was little comfort.
Unable to think clearly, or to communicate, I then became fixated on having the tube removed from my throat and tried to desperately convey this. As I tried to point at the tube, the nurse kept thinking I was trying to pull it out and would push my hands back onto the bed. I became increasingly irritated as she said repeatedly "in a minute" and "when you are awake" - I felt pretty much awake and could watch the minutes ticking by on the clock. I think the most distressing thing about the situation was that I still had my old lungs, so was coughing every few minutes, which meant she had to use suction to clear my airways. At least after the real transplant I will be waking up with healthy lungs and this should not be a problem. With the realisation that the transplant had not taken place, understandably, the pain also seemed to get worse - probably because it now felt so pointless and unncessary. I couldn't tell anyone it was hurting so instead tried writing out letters on the bed covers. Seeing that I was tying to write something out, Andrew told me to draw the letters on his hand and I was able to spell S-O-R-E and he could tell the nurse I was in pain. It wasn't long after this that the nurse finally decided I was awake enough and asked my family to leave so she could extubate me. She seemed to spend forever collecting pieces of equipment and fiddling with my tubes, before she finally asked me to cough hard and pulled out the tube. It was a blessed relief.
My family were allowed back into the room, and although I could now speak I suddenly had nothing to say. I did however have one rather unhelpful remark for my mum. To understand I have to explain that the day I got the phone call my mum had been telling me about a lady called Margaret Sinclair (who is soon to be made a Saint) that she had started praying to that day. So when I got the call my mum had said 'Oh, Margaret Sinclair was listening'. On finally finding my voice in ITU I pulled mum in close before muttering "Your Mary Sinclair is rubbish!" to which she quickly responded "Her name is Margaret, and she is not rubbish!" It was not one of my most mature moments, although I think we can safely blame the drugs in this instance ;-)
Soon after the extubation the transplant coordinator returned to see me again and offer more explanation now that I was more awake. He explained that the initial inspection of the lungs had been unremarkable - they had looked good and nothing unusual had been reported. At the point they clamp the donor lungs, a call is made to the coordinator to tell them to start surgery on the recipient (me). Around 35 minutes into the surgery the coordinator received a second phone call, which he expected was to tell him the lungs were on their way but it was instead to say there was something wrong with the donor lungs. After clamping, they perfuse the donor lungs with a preservative solution, during which time the blood will drain from the lungs. On performing this procedure the lower lobes of the lungs unexpectedly took on a patchy appearance - something similar to what can be seem in the victim of a road traffic accident (but this donor was not in this category) or in someone with a blood clot in their lungs (but this was also not the case). There was no clear explanation for this appearance and the surgeon had never seen anything like it appear at this stage before, but there was clearly some problem with perfusion in the lungs. He took the very brave decision to report the lungs as being unsuitable at this late stage. Much discussion took place within my own team, who decided that it would be much safer to stop the surgery now and leave me with my own lungs for a while longer, than it would be to continue and risk the transplanted lungs failing - possibly even that same day. It was very fortunate at this stage that the surgeon had only made an incision involving skin, fat tissue and some muscle layers - but he had not touched the bones or entered the chest cavity. If the call had come much later in the proceeding they may have reached a point of no return. On hearing this explanation I felt absolutely no anger or regret that they did not continue, but only relief that a problem showed itself in time, and not after the surgery when it would have been too late. Maybe mum's Margaret Sinclair was watching after all
More to follow..
The words filtered through the haze of anaesthetic drugs and in my confusion my first thought was 'are you joking, because that's not very funny'. As he carefully repeated the words "You have NOT had a transplant" the words slowly sunk in and I realised that this was no joke. My eyes opened wide in utter disbelief, and tears began to silently fall. I was still intubated so could not speak, and instead lay in the silence that followed. My mum was wiping my tears, and Andrew was holding my hand. At that moment in time it was little comfort.
Unable to think clearly, or to communicate, I then became fixated on having the tube removed from my throat and tried to desperately convey this. As I tried to point at the tube, the nurse kept thinking I was trying to pull it out and would push my hands back onto the bed. I became increasingly irritated as she said repeatedly "in a minute" and "when you are awake" - I felt pretty much awake and could watch the minutes ticking by on the clock. I think the most distressing thing about the situation was that I still had my old lungs, so was coughing every few minutes, which meant she had to use suction to clear my airways. At least after the real transplant I will be waking up with healthy lungs and this should not be a problem. With the realisation that the transplant had not taken place, understandably, the pain also seemed to get worse - probably because it now felt so pointless and unncessary. I couldn't tell anyone it was hurting so instead tried writing out letters on the bed covers. Seeing that I was tying to write something out, Andrew told me to draw the letters on his hand and I was able to spell S-O-R-E and he could tell the nurse I was in pain. It wasn't long after this that the nurse finally decided I was awake enough and asked my family to leave so she could extubate me. She seemed to spend forever collecting pieces of equipment and fiddling with my tubes, before she finally asked me to cough hard and pulled out the tube. It was a blessed relief.
My family were allowed back into the room, and although I could now speak I suddenly had nothing to say. I did however have one rather unhelpful remark for my mum. To understand I have to explain that the day I got the phone call my mum had been telling me about a lady called Margaret Sinclair (who is soon to be made a Saint) that she had started praying to that day. So when I got the call my mum had said 'Oh, Margaret Sinclair was listening'. On finally finding my voice in ITU I pulled mum in close before muttering "Your Mary Sinclair is rubbish!" to which she quickly responded "Her name is Margaret, and she is not rubbish!" It was not one of my most mature moments, although I think we can safely blame the drugs in this instance ;-)
Soon after the extubation the transplant coordinator returned to see me again and offer more explanation now that I was more awake. He explained that the initial inspection of the lungs had been unremarkable - they had looked good and nothing unusual had been reported. At the point they clamp the donor lungs, a call is made to the coordinator to tell them to start surgery on the recipient (me). Around 35 minutes into the surgery the coordinator received a second phone call, which he expected was to tell him the lungs were on their way but it was instead to say there was something wrong with the donor lungs. After clamping, they perfuse the donor lungs with a preservative solution, during which time the blood will drain from the lungs. On performing this procedure the lower lobes of the lungs unexpectedly took on a patchy appearance - something similar to what can be seem in the victim of a road traffic accident (but this donor was not in this category) or in someone with a blood clot in their lungs (but this was also not the case). There was no clear explanation for this appearance and the surgeon had never seen anything like it appear at this stage before, but there was clearly some problem with perfusion in the lungs. He took the very brave decision to report the lungs as being unsuitable at this late stage. Much discussion took place within my own team, who decided that it would be much safer to stop the surgery now and leave me with my own lungs for a while longer, than it would be to continue and risk the transplanted lungs failing - possibly even that same day. It was very fortunate at this stage that the surgeon had only made an incision involving skin, fat tissue and some muscle layers - but he had not touched the bones or entered the chest cavity. If the call had come much later in the proceeding they may have reached a point of no return. On hearing this explanation I felt absolutely no anger or regret that they did not continue, but only relief that a problem showed itself in time, and not after the surgery when it would have been too late. Maybe mum's Margaret Sinclair was watching after all
More to follow..
Sunday, March 30, 2008
The Dress Rehearsal – Part 1
It was Wednesday 19th March and I was watching TV, while mum was doing some ironing. She had stayed late that day because Andrew was away down south with work and wasn't due home until 9pm. It was around 8pm when the phone rang and I heard the voice of my transplant coordinator. He was asking if I was well and when I confirmed that yes, I was well, he told me that some lungs were potentially available and to start getting ready to leave. I felt a strange mixture of excitement and apprehension but managed to stay remarkably calm. I then of course realised that Andrew was unlikely to make it home before we had to leave and frantically started trying to reach him on his mobile, but his plane hadn't landed yet so I couldn't get through. In the meantime, we quickly got my case out (which was already packed) and added some last minute items, before packing a bag for Andrew and organising some things for Seb, who would be going to my inlaws for the duration. The coordinator phoned to tell me the ambulance had been called and would be with me shortly. I knew then that Andrew would not be home in time, so we decided that my dad would come and pick Andrew up and they could drive down together, dropping off Seb on route, and hopefully arriving in time.
I then had a call from ambulance control to say that they were very busy, so were going to fly me down instead from Glasgow Airport - which is where Andrew’s flight was coming in! On landing, Andrew realised there were about 20 missed calls from me and phoned straight away -we decided then that he would try and find out where the air ambulance would leave from and meet me there. An ambulance came and took mum and me to the airport, and when we got there Andrew was waiting with the crew – I felt so relieved. It was confirmed that both Andrew and mum could travel on the flight, so poor dad was left to travel down alone. The flight took about 35 minutes, compared with a potential 3-3.5 hr journey by road and it was pretty amazing flying into Newcastle and seeing it lit up at night. An ambulance was waiting on the runway to take us directly to the Freemans hospital.
On arrival at around 10.30 pm we were met by the transplant coordinator,who got us settled into a room and explained what would be happening. I had to get some blood tests, chest xray, temperature checked and a brief examination by the doctor to make sure I was well enough for the operation and that there was no evidence of acute infection. At this stage all we knew was the donor lungs were a good match but we did not know if they would be suitable for transplantation. The retrieval team were expected to arrive at the donor hospital around 11pm and procedures would commence to inspect the lungs. In the meantime we settled down and just waited.
At around 12am I was asked to have a shower and put on a surgical gown and at 1am the coordinator informed us that initial inspection of the lungs with bronchoscopy (camera) were very positive. We then had to await the final go ahead while further testing of the lungs took place. Excitement and anticipation would give way to waves of apprehension as the prospect of major surgery loomed but at the end of it the prospect of a new life glittered.
At around 2am the coordinator appeared with a trolley to say he had the go ahead, and I was going to theatre now. As I was wheeled down the ward I saw my dad walking towards us – I couldn’t believe he has made it with seconds to spare. Outside the doors to theatre I gave everyone a final hug, and in my thoughts asked Frances Ann to now watch over me.
I had some lines places and monitors attached before I was given the anaesthetic for what was expected to be a 6-8 hour operation. My anxieties melted as the drugs took hold, and I drifted into sleep.
Next thing I knew was waking up in ITU at 6am. I was intubated so couldn’t speak and my chest was throbbing. The transplant coordinator was standing by the beside repeatedly saying to me “Jacqueline, you have NOT had a transplant”
…More to follow
Monday, March 17, 2008
I'm still doing ok. Have been a bit more tired and breathless this last week, but that's to be expected when I've had a while off IV's. I've also been feeling quite sick off and on, which is starting to curtail my intake of food. I often feel sick when I have an infection, so will need to keep an eye on this and won't let things go on too long if it looks like something is brewing.
Otherwise life has been very quiet. It was Andrews birthday on Saturday so we went out for a meal and I allowed him to watch the rugby without interruption. I say allowed, because I normally do quite a lot of complaining when its on TV. I just don't really get it - a whole load of men rolling around on the grass, with some occasional grabbing of each others shorts (which is apparently part of the game). Although I must admit its much better than football, where they just kick the ball up the pitch and just when you think a goal might be scored, they kick it out! And so it goes on. An entire game can pass without anyone scoring a goal - what's that all about?! I think you can tell I'm not a big sports fan....
Seb was trying out something new yesterday. I popped upstairs for a few minutes and was coming back down on the stair lift. On my way down I could see into the living room, and there was Seb, lying stretched out in the middle of the glass coffee table. Obviously I squealed "Se-eeeeb! Get off!" However, as the stair lift moves at a snails pace, I had to just watch as he waited a few moments before casually standing up, doing a few large cat like stretches, and finally jumping off to come and see what all the fuss was about. I suspect he jumped up there to try and see out the window, but then thought he would test it out for napping whilst he was there. You really can't leave him alone for 2 minutes..
Otherwise life has been very quiet. It was Andrews birthday on Saturday so we went out for a meal and I allowed him to watch the rugby without interruption. I say allowed, because I normally do quite a lot of complaining when its on TV. I just don't really get it - a whole load of men rolling around on the grass, with some occasional grabbing of each others shorts (which is apparently part of the game). Although I must admit its much better than football, where they just kick the ball up the pitch and just when you think a goal might be scored, they kick it out! And so it goes on. An entire game can pass without anyone scoring a goal - what's that all about?! I think you can tell I'm not a big sports fan....
Seb was trying out something new yesterday. I popped upstairs for a few minutes and was coming back down on the stair lift. On my way down I could see into the living room, and there was Seb, lying stretched out in the middle of the glass coffee table. Obviously I squealed "Se-eeeeb! Get off!" However, as the stair lift moves at a snails pace, I had to just watch as he waited a few moments before casually standing up, doing a few large cat like stretches, and finally jumping off to come and see what all the fuss was about. I suspect he jumped up there to try and see out the window, but then thought he would test it out for napping whilst he was there. You really can't leave him alone for 2 minutes..
Friday, March 14, 2008
My cousin Bobby is running the Edinburgh marathon in aid of CF. There is a link to his justgiving page at the top of my blog for those of you who know him and would like to show some support :-) For those of you who don't know him, he is a strange (old) man who likes to think he is my favourite cousin (ideas of grandeur). I don't like to tell him otherwise. He is nice all the same, and would appreciate any spare pennies for his justgiving page...
Thursday, March 06, 2008
Exercise....at last!
I moved out of my exercise contemplation stage yesterday, and finally attended my physio for an appointment. We did a few minutes on the bike and some upper body weights, before attempting to join part of the cardiac rehab class, who were doing their warm up. I did manage to do some of the warm up, with a rest every few minutes, but overall I think I did quite well.
The one thing I did learn from this session is that I am terribly uncoordinated, and even the physio had to agree with me. I think my dream of taking up either salsa or ballroom dancing classes shall remain just that. A dream. I think I have mentioned my inability to do leg squats before - I just can't do it. Instead I do this kind of pelvic thrust motion, which is not very lady like and sends both myself and the physio into fits of giggles. I must practice in front of a mirror before my next session. The other great source of hilarity was the woman who fell off the treadmill. I thought she had collapsed at first, as she just fell suddenly prostrate, onto the moving treadmill. She then just lay motionless as the treadmill continued to move and slowly transport her onto the floor. Where she then lay motionless again. Needless to say my physio ran over to help the poor woman, who had to be given a glass of water and a chair, before she could overcome the shock. It turns out the treadmill has been pre-set to a programme which moved through different speeds - so when it suddenly changed pace, the woman wasn't expecting it and lost her balance. I know it wasn't very amusing for her, but I did have a sneaky chuckle to myself. Terrible sense of humour I know, but if you had been there...
I am now finished my distance learning course and am pleased to say I have passed it. I am still working on the CF relationship project, which is keeping me fairly busy, but will need to think of some more projects to keep myself occupied. I was looking at the OU again, and there is a digital photography course in May, which looks quite interesting. Although Andrew did kindly point out that I would need to expand my subject matter beyond birds and Seb. I don't see why. And just to be obstinate, I will leave you with some photos of birds and Seb...
I moved out of my exercise contemplation stage yesterday, and finally attended my physio for an appointment. We did a few minutes on the bike and some upper body weights, before attempting to join part of the cardiac rehab class, who were doing their warm up. I did manage to do some of the warm up, with a rest every few minutes, but overall I think I did quite well.
The one thing I did learn from this session is that I am terribly uncoordinated, and even the physio had to agree with me. I think my dream of taking up either salsa or ballroom dancing classes shall remain just that. A dream. I think I have mentioned my inability to do leg squats before - I just can't do it. Instead I do this kind of pelvic thrust motion, which is not very lady like and sends both myself and the physio into fits of giggles. I must practice in front of a mirror before my next session. The other great source of hilarity was the woman who fell off the treadmill. I thought she had collapsed at first, as she just fell suddenly prostrate, onto the moving treadmill. She then just lay motionless as the treadmill continued to move and slowly transport her onto the floor. Where she then lay motionless again. Needless to say my physio ran over to help the poor woman, who had to be given a glass of water and a chair, before she could overcome the shock. It turns out the treadmill has been pre-set to a programme which moved through different speeds - so when it suddenly changed pace, the woman wasn't expecting it and lost her balance. I know it wasn't very amusing for her, but I did have a sneaky chuckle to myself. Terrible sense of humour I know, but if you had been there...
I am now finished my distance learning course and am pleased to say I have passed it. I am still working on the CF relationship project, which is keeping me fairly busy, but will need to think of some more projects to keep myself occupied. I was looking at the OU again, and there is a digital photography course in May, which looks quite interesting. Although Andrew did kindly point out that I would need to expand my subject matter beyond birds and Seb. I don't see why. And just to be obstinate, I will leave you with some photos of birds and Seb...
Sleeping Beauty
Robin (yes, we had snow!)
Lesser Redpoll (quite pleased about this one, as they don't commonly visit gardens)
Wednesday, February 27, 2008
Irrational Thinking
So, I had a clinic appointment yesterday and got the best report I've had for a long time. I have managed to put on about 4kg since my admission in January, so am now about the heaviest I have ever been. I am on medication to help me gain weight, so am able to reduce the strength of this now, with a view to stopping it should I continue with this trend. My lung function was also up, which may be related to the weight gain, or just reflecting this period of stability. My oxygen levels were a little low, but they said as long as I wasn't symptomatic, I don't have to use the oxygen during the day if I don't feel I need it. So, overall an excellent report.
You would think I would be jumping for joy, but instead I reverted into anxious, panicky mode and declared that perhaps I didn't in fact need a transplant any more. I suggested that Newcastle may consider me too well if I continued to be stable, and would remove me from the list. This is nothing more than a figment of my imagination, but something that continues to haunt me whenever I have a period of stability. I think it largely stems from the difficulty I have always had in believing I am ill enough to require transplant, and my continual need to analyse the decision to be listed, based on however I currently feel. Don't get me wrong, it is not that I don't want to be called, because I desperately do. My life has changed beyond recognition in the past 2 years and I wholeheartedly want to be given that second chance to start living again. It's just that I always feel there is someone else who needs it more, someone else more deserving. Yet I also know that if I were to become that person who needs it most, then I have also started to move out of that window in which transplantation is most successful. You need to be strong to get a transplant, you need to be a good weight and you need to be as stable as possible; so technically now is the perfect time for me to be called.
My doctor managed to take my slightly hysterical comments seriously, and reassured me that yes, I definitely did need a transplant and that my decline in health over the past two years has confirmed this. He also told me that after my review with the Newcastle team in November, the consultant stated in his letter that I urgently needed a transplant. I guess maybe he knows more about it than I do...
I'm sure most of what I am saying will make little sense to people but I thought I would share it anyway. This road towards transplant is a difficult one; its not only about the physical health because the emotional journey is probably even more turbulent. Although I have a wonderful support network, it can still feel very lonely at times, especially when you have a tendency to think too much, and plenty time in which to do it.
So I guess the moral of that story is that I need to think less and do more...
So, I had a clinic appointment yesterday and got the best report I've had for a long time. I have managed to put on about 4kg since my admission in January, so am now about the heaviest I have ever been. I am on medication to help me gain weight, so am able to reduce the strength of this now, with a view to stopping it should I continue with this trend. My lung function was also up, which may be related to the weight gain, or just reflecting this period of stability. My oxygen levels were a little low, but they said as long as I wasn't symptomatic, I don't have to use the oxygen during the day if I don't feel I need it. So, overall an excellent report.
You would think I would be jumping for joy, but instead I reverted into anxious, panicky mode and declared that perhaps I didn't in fact need a transplant any more. I suggested that Newcastle may consider me too well if I continued to be stable, and would remove me from the list. This is nothing more than a figment of my imagination, but something that continues to haunt me whenever I have a period of stability. I think it largely stems from the difficulty I have always had in believing I am ill enough to require transplant, and my continual need to analyse the decision to be listed, based on however I currently feel. Don't get me wrong, it is not that I don't want to be called, because I desperately do. My life has changed beyond recognition in the past 2 years and I wholeheartedly want to be given that second chance to start living again. It's just that I always feel there is someone else who needs it more, someone else more deserving. Yet I also know that if I were to become that person who needs it most, then I have also started to move out of that window in which transplantation is most successful. You need to be strong to get a transplant, you need to be a good weight and you need to be as stable as possible; so technically now is the perfect time for me to be called.
My doctor managed to take my slightly hysterical comments seriously, and reassured me that yes, I definitely did need a transplant and that my decline in health over the past two years has confirmed this. He also told me that after my review with the Newcastle team in November, the consultant stated in his letter that I urgently needed a transplant. I guess maybe he knows more about it than I do...
I'm sure most of what I am saying will make little sense to people but I thought I would share it anyway. This road towards transplant is a difficult one; its not only about the physical health because the emotional journey is probably even more turbulent. Although I have a wonderful support network, it can still feel very lonely at times, especially when you have a tendency to think too much, and plenty time in which to do it.
So I guess the moral of that story is that I need to think less and do more...
Thursday, February 21, 2008
Friday, February 15, 2008
Dog walking and Rug buying...
Did someone say 'walk' ?!
I am still feeling ok, and am due my port flush next week, which means I have been off IV's for nearly a month :-) We have had some brighter weather recently, which has spurred me on to take Seb out for a little walk on a few occasions. I can only manage about 10 minutes, and its hard going, but I feel at least I am getting some exercise and Seb is certainly enjoying himself. Before this, I probably last took him out in October, so you can imagine the surprised look on his face when I shouted 'walkies'. He looked confused for a second, then literally threw himself at me in a most exuberant manner. As we went out the door he kept looking back over his shoulder to make sure I really was coming with him.... at least I felt my efforts were being appreciated. I should really use my oxygen to exercise as my oxygen saturations tend to fall when I am walking, but the cylinders are really too heavy to carry so it simply negates any benefit. However I will hopefully be getting to trial liquid oxygen in the near future, which is much lighter and more compact to carry. Maybe this will even help me walk a little further, which would be good news all round.
I am still amusing myself with a little studying and was pleased to have passed by 2nd assignment. I have already completed the third one and after that there is only one more to do. The course hasn't taken as long as I thought it would, but it has been a good introduction to studying and getting my brain more active again. Hopefully I will manage to keep up the efforts once the novelty has worn off!
I am also keeping busy by helping out my friend Emily with a project she is doing. We are looking at the issue of CF and relationships and are hoping to produce a booklet on the topic, as there is a distinct lack of literature in this area. Emily has been working hard getting lots of input from people with CF and their partners, and we are now starting to collate this. The idea is to put together peoples experiences on various topics, so that essentially the booklet will be a collaborative effort by people with CF, for people with CF. That's the idea anyway, although I'm sure things will evolve as we start to put it all together.
Other than that, life has been pretty quiet. Andrew has been busy painting the windows in the living room and replacing skirting boards, while I have contributed by doing some online rug shopping. I'm just waiting for it to arrive now, and hoping it looks remotely like it did in the picture....
Did someone say 'walk' ?!
I am still feeling ok, and am due my port flush next week, which means I have been off IV's for nearly a month :-) We have had some brighter weather recently, which has spurred me on to take Seb out for a little walk on a few occasions. I can only manage about 10 minutes, and its hard going, but I feel at least I am getting some exercise and Seb is certainly enjoying himself. Before this, I probably last took him out in October, so you can imagine the surprised look on his face when I shouted 'walkies'. He looked confused for a second, then literally threw himself at me in a most exuberant manner. As we went out the door he kept looking back over his shoulder to make sure I really was coming with him.... at least I felt my efforts were being appreciated. I should really use my oxygen to exercise as my oxygen saturations tend to fall when I am walking, but the cylinders are really too heavy to carry so it simply negates any benefit. However I will hopefully be getting to trial liquid oxygen in the near future, which is much lighter and more compact to carry. Maybe this will even help me walk a little further, which would be good news all round.
I am still amusing myself with a little studying and was pleased to have passed by 2nd assignment. I have already completed the third one and after that there is only one more to do. The course hasn't taken as long as I thought it would, but it has been a good introduction to studying and getting my brain more active again. Hopefully I will manage to keep up the efforts once the novelty has worn off!
I am also keeping busy by helping out my friend Emily with a project she is doing. We are looking at the issue of CF and relationships and are hoping to produce a booklet on the topic, as there is a distinct lack of literature in this area. Emily has been working hard getting lots of input from people with CF and their partners, and we are now starting to collate this. The idea is to put together peoples experiences on various topics, so that essentially the booklet will be a collaborative effort by people with CF, for people with CF. That's the idea anyway, although I'm sure things will evolve as we start to put it all together.
Other than that, life has been pretty quiet. Andrew has been busy painting the windows in the living room and replacing skirting boards, while I have contributed by doing some online rug shopping. I'm just waiting for it to arrive now, and hoping it looks remotely like it did in the picture....
Tuesday, February 05, 2008
Keeping busy
That's a couple of weeks since I finished my IVs and I am still feeling pretty good, so, long may it continue. I've not been needing my oxygen during the day at the moment, which makes moving about the house so much easier - no tugging the tubing behind me and getting it caught under doors. Plus, Seb has a tendency to sit on the tubing whenever possible, and refuses to move despite me tugging at it vigorously. Since I have been feeling a bit better, I have also managed to get out a bit more. This has resulted in the purchase of 2 new leather sofas. My life is so much more expensive when I am well - I dread to think what will happen after my transplant. Today was spent getting several new cushions for the new sofas, and I really do think the rug needs replacing...
Other than spending Andrews hard earned cash, I have been busying myself with some study. I got my first assignment back, and thankfully had passed. You don't get a grade, but I did get some very good comments which made the hard work (almost) seem worthwhile. I have now sent off my 2nd assignment, so fingers crossed for a similar response. Since I am now in study mode, I am also trying to do some background reading in Psychiatry, so that I am not altogether rusty by the time I go back to work. I am concerned that this sudden rush of intellectual stimulation may prove too much, and will therefore punctuate my learning with some daytime TV. I think its the only safe option.
I have also been doing some painting and have just finished some canvases of snowdrops, that my friend asked me to do. My next plan is something for the living room......you know, to go with the new sofas, and cushions...and rug. I would maintain that by painting something myself, I will overall be saving Andrew money.
So, I can say that life is not too bad just now, and I am at least able to keep myself amused. The odd thing however, is that during these periods of feeling more well, I actually become more anxious about the transplant. When I am unwell, I want to be called immediately and am filled with dread that the call will not come soon enough. When I start to recover, I almost forget how unwell I have been, and start to feel overwhelmed by the very idea of being called for transplant. Its only at these times that the enormity of what I am facing hits me. This anxiety leaks out in the most bizzare ways - for example, I can become all consumed by the fact the study bookshelves needs tidied or because I'm struggling to answer a question in my assignment, or because I start to think about going back to work post transplant and can't imagine ever being strong enough to face that. I worry about the most pointless things, and then I get annoyed at myself for wasting such precious time on trivial concerns. I know that underlying the trivial worries, are much greater ones, that I would rather not dwell on and that there is little benefit in exploring. It's so much safer to worry about whether these cushions really match the curtains.
I think what I need to do is learn to enjoy these times when I am feeling better and to simply believe that the call will come at the right time for me, and when it does, that I will be strong enough to face that challenge and embrace the opportunities that lie ahead.
That's a couple of weeks since I finished my IVs and I am still feeling pretty good, so, long may it continue. I've not been needing my oxygen during the day at the moment, which makes moving about the house so much easier - no tugging the tubing behind me and getting it caught under doors. Plus, Seb has a tendency to sit on the tubing whenever possible, and refuses to move despite me tugging at it vigorously. Since I have been feeling a bit better, I have also managed to get out a bit more. This has resulted in the purchase of 2 new leather sofas. My life is so much more expensive when I am well - I dread to think what will happen after my transplant. Today was spent getting several new cushions for the new sofas, and I really do think the rug needs replacing...
Other than spending Andrews hard earned cash, I have been busying myself with some study. I got my first assignment back, and thankfully had passed. You don't get a grade, but I did get some very good comments which made the hard work (almost) seem worthwhile. I have now sent off my 2nd assignment, so fingers crossed for a similar response. Since I am now in study mode, I am also trying to do some background reading in Psychiatry, so that I am not altogether rusty by the time I go back to work. I am concerned that this sudden rush of intellectual stimulation may prove too much, and will therefore punctuate my learning with some daytime TV. I think its the only safe option.
I have also been doing some painting and have just finished some canvases of snowdrops, that my friend asked me to do. My next plan is something for the living room......you know, to go with the new sofas, and cushions...and rug. I would maintain that by painting something myself, I will overall be saving Andrew money.
So, I can say that life is not too bad just now, and I am at least able to keep myself amused. The odd thing however, is that during these periods of feeling more well, I actually become more anxious about the transplant. When I am unwell, I want to be called immediately and am filled with dread that the call will not come soon enough. When I start to recover, I almost forget how unwell I have been, and start to feel overwhelmed by the very idea of being called for transplant. Its only at these times that the enormity of what I am facing hits me. This anxiety leaks out in the most bizzare ways - for example, I can become all consumed by the fact the study bookshelves needs tidied or because I'm struggling to answer a question in my assignment, or because I start to think about going back to work post transplant and can't imagine ever being strong enough to face that. I worry about the most pointless things, and then I get annoyed at myself for wasting such precious time on trivial concerns. I know that underlying the trivial worries, are much greater ones, that I would rather not dwell on and that there is little benefit in exploring. It's so much safer to worry about whether these cushions really match the curtains.
I think what I need to do is learn to enjoy these times when I am feeling better and to simply believe that the call will come at the right time for me, and when it does, that I will be strong enough to face that challenge and embrace the opportunities that lie ahead.
Tuesday, January 29, 2008
Wednesday, January 23, 2008
Stair lifts and Lycra..
I finished my IV antibiotics today so was at the hospital for a quick check up. All the news was good - my lung function has come back up, my oxygen levels were much better and overall the doc was very pleased with my response to the antibiotics. Fingers crossed it lasts for a wee while!
I finally got my stair lift installed last week, so have been buzzing up and down on that. Seb was a little unsure at first and threw some tentative barks at it, but now he doesn't even bat an eye as I trundle up and down (i say trundle because it is painstakingly slow). He has had a couple of shots sitting on my knee and seemed to enjoy the ride - he certainly wasn't at all nervous. I'm sure it will be no time at all before he is operating it himself..
My other news is that I've started a distance learning course, to try and give me something to focus on and to help structure my day better. Its on the topic of 'conflict management' which I feel will be useful at work in the future. I have now completed my first assignment and am waiting on feed back to see if I passed it before I move onto the next section. I think I really need something to focus on as I am feeling quite fed up at the moment and a large part of that is down to sheer boredom. I miss working, especially the challenges and social aspect that it brings with it. Being at home all the time is fairly isolating and I do feel very much in limbo at the moment - just waiting on that call, but not quite believing it will ever come. I am hoping that spending some time 'working', albeit at home, will make me feel that I have achieved something in my day, which in itself is a great tonic for self esteem. The other great tonic would be to start concentrating on exercise again, which has somewhat fallen by the wayside. I am in the contemplation stage at the moment - a lot of thinking about exercise, but none actually being done! Hopefully by the time I write my next blog I will have moved to the action stage and will be possibly sporting some sweat bands and wearing lycra.....the mind boggles.
I finished my IV antibiotics today so was at the hospital for a quick check up. All the news was good - my lung function has come back up, my oxygen levels were much better and overall the doc was very pleased with my response to the antibiotics. Fingers crossed it lasts for a wee while!
I finally got my stair lift installed last week, so have been buzzing up and down on that. Seb was a little unsure at first and threw some tentative barks at it, but now he doesn't even bat an eye as I trundle up and down (i say trundle because it is painstakingly slow). He has had a couple of shots sitting on my knee and seemed to enjoy the ride - he certainly wasn't at all nervous. I'm sure it will be no time at all before he is operating it himself..
My other news is that I've started a distance learning course, to try and give me something to focus on and to help structure my day better. Its on the topic of 'conflict management' which I feel will be useful at work in the future. I have now completed my first assignment and am waiting on feed back to see if I passed it before I move onto the next section. I think I really need something to focus on as I am feeling quite fed up at the moment and a large part of that is down to sheer boredom. I miss working, especially the challenges and social aspect that it brings with it. Being at home all the time is fairly isolating and I do feel very much in limbo at the moment - just waiting on that call, but not quite believing it will ever come. I am hoping that spending some time 'working', albeit at home, will make me feel that I have achieved something in my day, which in itself is a great tonic for self esteem. The other great tonic would be to start concentrating on exercise again, which has somewhat fallen by the wayside. I am in the contemplation stage at the moment - a lot of thinking about exercise, but none actually being done! Hopefully by the time I write my next blog I will have moved to the action stage and will be possibly sporting some sweat bands and wearing lycra.....the mind boggles.
Tuesday, January 15, 2008
Apologies for the break in blogging, but I have just escaped from hospital. The oral antibiotics unfortunately didn't work, so I had to go in to start some IVs again and get myself back on track. I am only half way through the course but have been allowed home to finish them here - much better food and more rest in my own bed. I am definitely feeling better than I was last week so everything is moving in the right direction.
While I was in hospital I understand there has been a lot of media attention surrounding Gordon Brown announcing his support for an opt out system for organ donation. Although an opt out system is not the the lone answer to organ shortages, it does seem to have helped improve the rates in other countries. However, even if we do not move to this system, the controversy surrounding the topic has at least highlighted the issue of shortages once more, and gets people talking about donation which in itself is so vital. Although polls suggest over 90% of the population support organ donation, less than a quarter get round to signing the register, which is a permanent way of making your wishes clear. Relatives will refuse consent for donation in around 40% cases; the main reason being given is that they did not know what their relatives wishes were. Even if we move to an 'opt out' system where consent is presumed, the relatives would still be consulted and retain the power to override the decision to donate, if they felt this was what their relative would want. I can see argument both for an against an opt out system, and I can also understand why people may not wish to donate, and whole heartedly agree that they should reserve the right to make this decision. What I do feel very strongly about however is the need for people to talk about the topic of organ donation with their nearest and dearest. Although it is a difficult and emotive subject to broach, that one conversation where your wishes are made clear, could be the difference between life and death for someone waiting on that vital transplant.
click here to sign register
While I was in hospital I understand there has been a lot of media attention surrounding Gordon Brown announcing his support for an opt out system for organ donation. Although an opt out system is not the the lone answer to organ shortages, it does seem to have helped improve the rates in other countries. However, even if we do not move to this system, the controversy surrounding the topic has at least highlighted the issue of shortages once more, and gets people talking about donation which in itself is so vital. Although polls suggest over 90% of the population support organ donation, less than a quarter get round to signing the register, which is a permanent way of making your wishes clear. Relatives will refuse consent for donation in around 40% cases; the main reason being given is that they did not know what their relatives wishes were. Even if we move to an 'opt out' system where consent is presumed, the relatives would still be consulted and retain the power to override the decision to donate, if they felt this was what their relative would want. I can see argument both for an against an opt out system, and I can also understand why people may not wish to donate, and whole heartedly agree that they should reserve the right to make this decision. What I do feel very strongly about however is the need for people to talk about the topic of organ donation with their nearest and dearest. Although it is a difficult and emotive subject to broach, that one conversation where your wishes are made clear, could be the difference between life and death for someone waiting on that vital transplant.
click here to sign register
Friday, January 04, 2008
Happy New Year!
Well, that's all the festivities over for another year. I had a lovely Christmas at home with my family. Present opening, as normal, took hours to complete before we all settled down to a lovely home cooked Christmas dinner in the afternoon, and then played some games and watched TV in the evening. Unfortunately since Christmas I haven't been feeling very well, so New Year was a bit of a struggle really. It was clear that the last lot of IVs had been fairly ineffective, so I started some oral antibiotics on Boxing day. I was not making any progress over the past week, so finally headed up to the hospital yesterday. I have to try adding in another oral antibiotic first, in a bid to space my IV's out more, so I will see how things go over the weekend. I am just feeling very tired and breathless at the moment, but hopefully I will start to see an improvement soon.
You will all be pleased to hear that Seb has enjoyed his holidays. He has for the most part been well behaved, but with the usual moments of sheer naughtiness. The covert food scavenging continues this year, with him demolishing 2 pieces of madeira cake left on the coffee table, whilst we were busy eating dinner. There was another incident of him being found on the dining room table, licking a left over desert bowl (embarrassingly this incident occurred in someone else's house). There was the usual stealing of objects not belonging to him, and the climbing onto things he shouldn't be climbing onto. A new one for this year, was finding him sitting inside the writing bureau (obviously the lid was open). I'm not sure if he wanted to write a letter or if he was looking for something in particular. What never fails to amaze me is the indignant look he gives you when he is found in these strange places - its a 'hello? Can I help you?' look, as if it's perfectly normal to be sitting in the writing bureau. Although in Seb's world it probably is.
Now, I'm off to play the new nintendo DS I got from Andrew for Christmas. Oh wait...yes, that's right, I can't get on it, because Andrew has hardly put it down in days......funny that....
Well, that's all the festivities over for another year. I had a lovely Christmas at home with my family. Present opening, as normal, took hours to complete before we all settled down to a lovely home cooked Christmas dinner in the afternoon, and then played some games and watched TV in the evening. Unfortunately since Christmas I haven't been feeling very well, so New Year was a bit of a struggle really. It was clear that the last lot of IVs had been fairly ineffective, so I started some oral antibiotics on Boxing day. I was not making any progress over the past week, so finally headed up to the hospital yesterday. I have to try adding in another oral antibiotic first, in a bid to space my IV's out more, so I will see how things go over the weekend. I am just feeling very tired and breathless at the moment, but hopefully I will start to see an improvement soon.
You will all be pleased to hear that Seb has enjoyed his holidays. He has for the most part been well behaved, but with the usual moments of sheer naughtiness. The covert food scavenging continues this year, with him demolishing 2 pieces of madeira cake left on the coffee table, whilst we were busy eating dinner. There was another incident of him being found on the dining room table, licking a left over desert bowl (embarrassingly this incident occurred in someone else's house). There was the usual stealing of objects not belonging to him, and the climbing onto things he shouldn't be climbing onto. A new one for this year, was finding him sitting inside the writing bureau (obviously the lid was open). I'm not sure if he wanted to write a letter or if he was looking for something in particular. What never fails to amaze me is the indignant look he gives you when he is found in these strange places - its a 'hello? Can I help you?' look, as if it's perfectly normal to be sitting in the writing bureau. Although in Seb's world it probably is.
Now, I'm off to play the new nintendo DS I got from Andrew for Christmas. Oh wait...yes, that's right, I can't get on it, because Andrew has hardly put it down in days......funny that....
Sunday, December 23, 2007
ONLY 2 MORE SLEEPS...
I am now back home at my parents for Christmas, so it feels like the festive season has now begun. Even wee Seb had a bath today in preparation for Santa coming. I am nearly finished the IVs and feel ok-ish - not a whole lot better than I did when I started them, but not any worse. Hopefully it will tide me over the festive period though and as long as I pace myself I should be ok.
It feels strange coming to the end of another year on the transplant list, and now looking forward, wondering where I will be this time next year. It is also strange looking back over the past year, which has seen some important changes in my life. At the beginning of the year I started to use overnight oxygen, then shortly after, oxygen for exercising and now laterally, require it much more during the day. Mid way through the year, I finally realised that work was beginning to take its toll, and what started as a months leave has now become almost 7 months away from work. In that time I expected to stabilise in health, but instead had a summer of frequent infections, spiralling weight loss and for the first time since I was placed on the list, began to wonder if that call would come in time. Thankfully the winter months, so far, have brought me stability, weight gain and the feeling that I have pulled back some control over my health. I am ever hopeful that this can continue into the new year and that stability can be the key word for 2008.
I have also had some interesting experiences over the past year. I was short listed for the Breathing Life Awards and travelled to London for the star studded ceremony, and thereafter, appeared in the Daily Mail to raise awareness to the issues of Organ donation. I gave a speech at Scottish Parliament in the Summer as part of the Live Life then Give Life campaign, and more recently had a further foray into public speaking at a palliative care conference. So, despite the downs of health related issues, there I have also had my fair share of positive experiences this year, which I can take forward as the highs of 2007.
As I now prepare to spend the festive season with my family, I remain positive and hopeful for the coming year. I have made it successfully through this past year, and am still here and still standing. I have plenty of fight left to see me through this coming year, and whenever that call comes I am ready to take that step. A step which will see me moving forward to a new and exciting life, filled with endless opportunities and new beginnings.
So, on that positive note, I would like to wish everyone a Happy Christmas and wonderful New year!
I am now back home at my parents for Christmas, so it feels like the festive season has now begun. Even wee Seb had a bath today in preparation for Santa coming. I am nearly finished the IVs and feel ok-ish - not a whole lot better than I did when I started them, but not any worse. Hopefully it will tide me over the festive period though and as long as I pace myself I should be ok.
It feels strange coming to the end of another year on the transplant list, and now looking forward, wondering where I will be this time next year. It is also strange looking back over the past year, which has seen some important changes in my life. At the beginning of the year I started to use overnight oxygen, then shortly after, oxygen for exercising and now laterally, require it much more during the day. Mid way through the year, I finally realised that work was beginning to take its toll, and what started as a months leave has now become almost 7 months away from work. In that time I expected to stabilise in health, but instead had a summer of frequent infections, spiralling weight loss and for the first time since I was placed on the list, began to wonder if that call would come in time. Thankfully the winter months, so far, have brought me stability, weight gain and the feeling that I have pulled back some control over my health. I am ever hopeful that this can continue into the new year and that stability can be the key word for 2008.
I have also had some interesting experiences over the past year. I was short listed for the Breathing Life Awards and travelled to London for the star studded ceremony, and thereafter, appeared in the Daily Mail to raise awareness to the issues of Organ donation. I gave a speech at Scottish Parliament in the Summer as part of the Live Life then Give Life campaign, and more recently had a further foray into public speaking at a palliative care conference. So, despite the downs of health related issues, there I have also had my fair share of positive experiences this year, which I can take forward as the highs of 2007.
As I now prepare to spend the festive season with my family, I remain positive and hopeful for the coming year. I have made it successfully through this past year, and am still here and still standing. I have plenty of fight left to see me through this coming year, and whenever that call comes I am ready to take that step. A step which will see me moving forward to a new and exciting life, filled with endless opportunities and new beginnings.
So, on that positive note, I would like to wish everyone a Happy Christmas and wonderful New year!
Monday, December 10, 2007
Only 15 sleeps until Christmas...
I spent the weekend putting up the Christmas decorations and making a Christmas CD, which I have been playing continuously since its completion ( I may or may not be listening to it at the moment). Seb has shown very little interest in the Christmas tree this year, and in fact, he took a wee huff while we were decorating it and went off to the kitchen to sulk. I think he is annoyed because it is blocking his view from the living room window. He has however taken some interest in the nativity scene, and I doubt very much it is due to religious reasons. I left him sleeping peacefully in his basket this morning when I went to get dressed, and when I returned he was still in the basket sound asleep. I was sitting in the living room for a few minutes when I first noticed a candle on the coffee table had moved slightly. On surveying the room for further evidence, I find that the nativity scene (which was sitting on a side table) had been raided. The hay from the stable was all over the sofa and all the figures scattered around the table. At first I couldn't locate baby Jesus and feared the worst, but fortunately he had just rolled under the sofa. I am just so relieved that he hadn't eaten or chewed any of the figures, as my mum got them as a child (this makes them really quite old, but I won't say how old) so it would have been a disaster. I will now have to make sure he is not left unattended in the living room again, even if he does appear to be sound asleep.I forgot to mention in my last blog about the talk I gave at a conference recently. I was asked to help out by one of the CF trust's expert patient advisers, as she was unable to meet the commitment and was looking for a replacement speaker. The conference was about Palliative care, where this is taken to mean any care that is non-curative. Traditionally palliative care has been concerned with end of life care specifically and commonly in relation to cancer. However, it has become clear in recent years that palliative care is required at many stages of an illness, and that as well as cancer, it also applies to most chronic illnesses. I had to talk about my experiences as a patient, and based on this, what I would need and want from services. The CF team can be used as an example of a team who often deliver palliative care, as most of the treatments in CF (especially in the later stages) are to relieve symptoms and are not curative in nature. I was able to use the CF team, as well as all the other services involved in my care, as a basis to my talk. I had to speak for around 15-20minutes, and I feel that I did manage to get a few important messages across in that time. The attendees found it helpful to hear things from a patients perspective also, and the feedback after the event was apparently very positive. It's all good experience in the art of public speaking and presentation skills, which will be useful for my work in future.
I am starting some IV antibiotics tomorrow. I am not feeling too bad, but my chest was definitely on the downward slope and I was anxious about leaving things any nearer to Christmas and ending up unwell over the festive season. Hopefully this will give me a wee boost, and I can relax and enjoy all the festivities. I have had a reasonable break from IV's so I am not too upset about going back on them, although I'm not looking forward to having to get up early to make up the morning dose. I'm sure the 2 weeks will fly in though, and I finish the course on Christmas eve, which leaves me free for all the present opening on Christmas morning! Only 15 more sleeps...
Wednesday, December 05, 2007
I'm pleased to say that I am still feeling ok, and chest wise have been more stable over the past month than I have been all year. The last few days I have been a little more out of breath, but even if this is due to infection brewing, I am still delighted to have come this far without IV's. I will just see how things are over the next few days, as it may just settle down again, and if not, I'm sure I will have caught things early and in time for the festive season.
Speaking of the festive season, its nearly time to put up my Christmas tree and I can't wait. I have already bought and wrapped all my presents, which is clearly a sign that I have way too much time on my hands. To be fair, I am trying to be very organised just in case I happen to get 'that call'. You just never know. (Although to be honest, January would be more convenient when I have nothing else planned on my social calender ;-) )
My other good news is that I am getting a stair lift installed at home. I have been struggling with the stairs for most of this year and after a rather lengthy wait to be assessed, I finally got the go ahead to have one installed. It will take about a month to build, so hopefully by the new year I will be buzzing up and down the stairs to my hearts content. It will make such a difference to my quality of life, especially when I have a chest infection. The last couple of bad infections I've had were spent in hospital and I know if I had been at home there is no way I could manage the stairs, so hopefully this will make things easier in future. The only concern I have is keeping Seb from playing on it. I have no doubt he could learn to operate the system and would be away up the stairs before I know it. Unfortunately I think the rail will also obscure the bannister, where, when attention seeking, he likes to lie with his head poking through. I will leave you with some photos to illustrate...
Speaking of the festive season, its nearly time to put up my Christmas tree and I can't wait. I have already bought and wrapped all my presents, which is clearly a sign that I have way too much time on my hands. To be fair, I am trying to be very organised just in case I happen to get 'that call'. You just never know. (Although to be honest, January would be more convenient when I have nothing else planned on my social calender ;-) )
My other good news is that I am getting a stair lift installed at home. I have been struggling with the stairs for most of this year and after a rather lengthy wait to be assessed, I finally got the go ahead to have one installed. It will take about a month to build, so hopefully by the new year I will be buzzing up and down the stairs to my hearts content. It will make such a difference to my quality of life, especially when I have a chest infection. The last couple of bad infections I've had were spent in hospital and I know if I had been at home there is no way I could manage the stairs, so hopefully this will make things easier in future. The only concern I have is keeping Seb from playing on it. I have no doubt he could learn to operate the system and would be away up the stairs before I know it. Unfortunately I think the rail will also obscure the bannister, where, when attention seeking, he likes to lie with his head poking through. I will leave you with some photos to illustrate...
Seb looks dejected and forlorn because no one is paying him any attention
Seb looks rather surprised when he is informed that his peep hole will shortly be obscured by a Stannah stair lift
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