Up North and Round About
I had a lovely weekend up North, although pretty tiring. We left the house at 7.45am on Saturday and got back at 10.30pm on Sunday..phew! We dropped Seb off at his Granny's first and gave everyone instructions on his training schedule haha. He thought he would be getting away with his usual nonsense for the weekend ;-) Then we headed up to Inverness for the afternoon with my friend Andrew, before going on up to Elgin for Saturday night to stay with some friends there. We had a lovely evening! Then on Sunday we came back via Aberdeen way to see my friend Fi, and went out for an amazing lunch. I feel like I spent the whole weekend eating! Then back home via mum and dads to pick up wee Seb, who apparently had been very good (for once). Apart from barking incessantly at the back gate, so mum went out and sprayed him with water. I think he is getting the idea now! He is allowed to bark but he should also stop when you ask him to, which is the part he has great difficulty with :-)
I had a quiet Monday, trying to just catch up and take it easy after the busy weekend. On Tuesday I met a friend for lunch, which was lovely, before attending the last of my PBL facilitator training sessions. It was quite interesting and we were mostly feeding back on our experiences of sitting in on the PBL group. I seem to have an opinion about everything these days and felt I maybe did a little too much talking. Better than not joining in....I think. I would really love to facilitate a block of 5-10 weeks for some experience but I am not sure I will be able to do this in my current job, as my funding should technically be used for clinical work. Hopefully there is a way round this though, as I would really like to try it. I am also hoping to set a return to work date but am waiting to hear about my funding at the moment, so fingers crossed that is all ok. It is rather complicated but because I am only able to go back part time the post I am looking at is supernumerary but funding is very limited and it is difficult to get one of these posts. I don't feel ready for full time work, especially after being off for about 16 months now, and only working part time for the past 5 years. I think it would be too much of a shock to the system! Plus, I also have a lot of outpatient appointments and trips to Newcastle for the foreseeable future, so need to have time to take care of these. I'm sure it will all work out though :-)
Yesterday I had a great day as I went to visit my friend in Fife. I was driving there (about 1hr 40min drive) and suddenly thought how utterly fantastic it was that I could just do that...and know that I wouldn't feel ill or too tired! Amazing. Total freedom. I took Seb with me and we were unsure if this would work out as she has two border collies. The younger collie was out and about, as they live on a farm, but the older one, Sky, was at home. However Sky and Seb seemed to get on pretty well! Seb tried to do a wee growl at first but I gave him a loud 'NO' and he stopped. He then wandered round the kitchen with Sky following sniffing him - Seb just pretended he hadn't noticed this large dog at his backside haha and continued to wander around. For the most part they just ignored each other, and later in the day, both got into their own baskets for a wee nap. Cute! Seb had a brilliant day though, as we took a walk round part of the farm and he was fascinated with the cows and chickens and all the farmyard smells. He did get chased by a chicken at one point and got the fright of his life haha. He was also very very naughty when he was left momentarily in the kitchen, while I moved my car - I went back in to find him on the kitchen table helping himself to some cheese. What an embarrassment. I did ask about this stealing behaviour at dog classes and they suggested I leave out a mustard sandwich and it would put him off stealing again! The problem is that Seb doesn't just steal any type of food...he is really quite fussy so I really don't think he would fall for it. Maybe give it a go though.
I will leave you with a picture of Seb. It's not a great pic but just to show you where I found him lying the other day...this is a new one for him. The fire wasn't even on!
Thursday, October 30, 2008
Friday, October 24, 2008
More Training and ENT
I have been quite busy organising things for Team Jac and trying to get sponsor sheets out to everyone. I sent an email to everyone with the Just Giving link - however I know some people have not received this as some work places filter out email with URL's in them....so if you didn't get it please let me know, or just click on the link to the right and you will get the address. It's all coming together nicely though and we are now approaching 80 members of Team Jac :-)
Seb also had another dog training session last night. He was a little more confident this week but was still quite nervous of the other dogs. He didn't bark however, so that must have been a lesson learned! We started off by showing the trainers how we were getting on with walking to heel - she was impressed with Seb and said there had been a big improvement. That's my boy! We just need to work on our 'turns' as normally when I am walking him we don't randomly turn round so he wanted to just keep going in a straight line. We then had to practice a 'sit and stay' - he was good at this as I get him to sit and stay when I answer the front door, so he does know what the command means. In fact he looked rather bored throughout, as if it were all beneath him!! Then we did the first practice of recall - one at time in front of everyone. The trainer held the dog and then you had to call them. Most of the dogs flew down the hall at high speed, although many of them went past the owners and headed for the front door!! Seb however, wandered casually down the hall, stopping every so often to sniff the skirting boards, and I am at the other end waving maniacally and shouting his name. When he does recall at home he either ignores you completely because he is too busy barking in the garden, or he flies in at top speed and stops right at your feet. I was hoping he would do the latter in class, but I suppose as least he did come to me...albeit at his own pace ;-) I did also tell them that since I have been doing the training he has been more disobedient in other areas, for example, refusing to sit or come when asked. She said he is just trying to re exert his place as 'boss' but that I need to just be consistent and he will soon learn that this is not the case. They also came round with tit bits for the dogs and Seb was so cute - he sat down and then took it ever so gently from the trainer - she thought he was adorable! In reality, he is actually very suspicious of people giving him food so tend to carefully investigate it first, haha.
Other news is that I had my ENT appointment this week. I drove over to the hospital on Tuesday, eventually got parked and was pleased to have arrived 10 minutes early. I soon found out however that I was in fact 24 hours and 10 minutes early! My appointment was on Wednesday. What a numpty! So I went back on Wednesday and there was good and bad news. The good news is that the MRI scan did not show any major infection or anything worrying. It did show sinuses that have had far to much surgery and are completely abnormal. There were pockets of fluid in places and a few other things they could offer surgery for, however, he said that it was unlikely to help and would more likely make matters worse. So the bad news is that nothing can really be done. I did emphasise how much pain I was getting and how much this is bothering me, so he has referred me to the facial pain doctors to see if they have any suggestions. I am hoping they can find something that controls the pain a bit better. I could cope with it if it wasn't on a daily basis...it's the chronicity of it that gets me down, so fingers crossed I get some kind of answer soon.
Also on the medical front is the joint pain -my knees have been better but now my ankles are sore! I woke up during the night and could hardly move one of them, although it had eased off when I woke up. Very odd. I have also come out with the rash on my arm again, which I used to get before the transplant associated with joint pain, so there is definitely something odd going on. Hopefully it will just ease off in time though and being my knees and ankles, it must surely be related to using the joints more. I need to get it sorted though - I have a 10mile walk to train for!!
I am away this weekend up North - a wee tour to see some friends. We are heading up to Inverness tomorrow and then Elgin tomorrow night, before coming back via Aberdeen. Busy weekend ahead! I am looking forward to seeing my friends though and it will be a nice break away for us. Wee Seb is going to his granny's though - I hope they keep up his training ;-)
I have been quite busy organising things for Team Jac and trying to get sponsor sheets out to everyone. I sent an email to everyone with the Just Giving link - however I know some people have not received this as some work places filter out email with URL's in them....so if you didn't get it please let me know, or just click on the link to the right and you will get the address. It's all coming together nicely though and we are now approaching 80 members of Team Jac :-)
Seb also had another dog training session last night. He was a little more confident this week but was still quite nervous of the other dogs. He didn't bark however, so that must have been a lesson learned! We started off by showing the trainers how we were getting on with walking to heel - she was impressed with Seb and said there had been a big improvement. That's my boy! We just need to work on our 'turns' as normally when I am walking him we don't randomly turn round so he wanted to just keep going in a straight line. We then had to practice a 'sit and stay' - he was good at this as I get him to sit and stay when I answer the front door, so he does know what the command means. In fact he looked rather bored throughout, as if it were all beneath him!! Then we did the first practice of recall - one at time in front of everyone. The trainer held the dog and then you had to call them. Most of the dogs flew down the hall at high speed, although many of them went past the owners and headed for the front door!! Seb however, wandered casually down the hall, stopping every so often to sniff the skirting boards, and I am at the other end waving maniacally and shouting his name. When he does recall at home he either ignores you completely because he is too busy barking in the garden, or he flies in at top speed and stops right at your feet. I was hoping he would do the latter in class, but I suppose as least he did come to me...albeit at his own pace ;-) I did also tell them that since I have been doing the training he has been more disobedient in other areas, for example, refusing to sit or come when asked. She said he is just trying to re exert his place as 'boss' but that I need to just be consistent and he will soon learn that this is not the case. They also came round with tit bits for the dogs and Seb was so cute - he sat down and then took it ever so gently from the trainer - she thought he was adorable! In reality, he is actually very suspicious of people giving him food so tend to carefully investigate it first, haha.
Other news is that I had my ENT appointment this week. I drove over to the hospital on Tuesday, eventually got parked and was pleased to have arrived 10 minutes early. I soon found out however that I was in fact 24 hours and 10 minutes early! My appointment was on Wednesday. What a numpty! So I went back on Wednesday and there was good and bad news. The good news is that the MRI scan did not show any major infection or anything worrying. It did show sinuses that have had far to much surgery and are completely abnormal. There were pockets of fluid in places and a few other things they could offer surgery for, however, he said that it was unlikely to help and would more likely make matters worse. So the bad news is that nothing can really be done. I did emphasise how much pain I was getting and how much this is bothering me, so he has referred me to the facial pain doctors to see if they have any suggestions. I am hoping they can find something that controls the pain a bit better. I could cope with it if it wasn't on a daily basis...it's the chronicity of it that gets me down, so fingers crossed I get some kind of answer soon.
Also on the medical front is the joint pain -my knees have been better but now my ankles are sore! I woke up during the night and could hardly move one of them, although it had eased off when I woke up. Very odd. I have also come out with the rash on my arm again, which I used to get before the transplant associated with joint pain, so there is definitely something odd going on. Hopefully it will just ease off in time though and being my knees and ankles, it must surely be related to using the joints more. I need to get it sorted though - I have a 10mile walk to train for!!
I am away this weekend up North - a wee tour to see some friends. We are heading up to Inverness tomorrow and then Elgin tomorrow night, before coming back via Aberdeen. Busy weekend ahead! I am looking forward to seeing my friends though and it will be a nice break away for us. Wee Seb is going to his granny's though - I hope they keep up his training ;-)
Tuesday, October 21, 2008
Just Giving Site
I have now set up my Just Giving site for Team Jac, where you can make a donation online. This is the easiest, and preferred, method for donation. There should be a little icon on the right hand side for you to click on, although I am having problems displaying it on my computer. If you can't see it then please click on this link http://www.justgiving.com/teamjac
Thanks!
I have now set up my Just Giving site for Team Jac, where you can make a donation online. This is the easiest, and preferred, method for donation. There should be a little icon on the right hand side for you to click on, although I am having problems displaying it on my computer. If you can't see it then please click on this link http://www.justgiving.com/teamjac
Thanks!
Monday, October 20, 2008
Dog Training and Human Training
Seb had his first dog training class last Thursday, or perhaps I should say, we had our first dog owner training class :-) He was a little overwhelmed at first, as there were around 15 dogs in the class, many of which were large and rather manic. Seb hid under my chair for the first wee while but then he became a bit bold and strutted out barking his head off. This set another couple of dogs off, and before you know it, mayhem ensues. In order to control the barking, there is someone who goes around with a water spray and if the dog keeps yapping, they get a sprayed with water. Another dog got it first, but the owner kindly pointed me out and said 'Her dog started it!' so poor Seb got a soaking as well! It certainly stopped him barking. He then hid back under the chair and tried barking from there, but he got another spray so that was the end of that master plan. After that he was quite good at not barking when I told him to stop, so it certainly seems to work. We were learning about walking to heel in this class, although not putting commands to it yet. There were 4 trainers, so you were taken up one at a time to get individual training, which was very helpful, especially since every dog is different. The trainer remembered Seb from the microchipping but she mustn't have thought he was too bad because she pointed him out to her trainee for her to take. I had to get Seb to stand at my left side, not moving, and then he had to walk when I started walking, staying beside me. For a dog who has never been taught to walk to heel, he did pretty well on his first attempt and we didn't stay on the floor long. I was one of those annoying people, pointing out other dogs to Andrew and saying 'Oh, at least he isn't as bad as that!' Very satisfying. There was one very scary dog, who was totally wild. He apparently bit the trainer when she microchipped him and she showed us the massive bite mark on her arm to prove it. Even more worrying was the fact he was apparently muzzled at the time! I must admit it's a little unnerving having the dog in the class, but I'm sure the trainer will keep an eye out. I couldn't really work out if Seb enjoyed it or not...we will see what his reaction is this week.
So since then we have been practising. Anyone who has had the pleasure of walking Seb before would be truly amazed! He previously stopped every 2 metres to sniff a bush, tree, lamp post etc and would not move on until this had taken place. He also had to pee about 20 times on average. Now I have him walking beside me all the way round without stopping to sniff once!! At certain grassy areas I un-clip the lead (it's one of those extendible ones ) and he runs onto the grass for a while, but he usually comes back fairly quickly...and today he even came back straight into position by my left side. Clearly Seb was not the problem.....I just let him away with too much and he is perfectly capable of walking along like a normal dog. I am so competitive that he really will have to be top of the class ;-)
Friday was a really relaxing day with my friend, and it was nice to just chill out. We did however have a good chat about Team Jac and the logistics of the day, now that I have over 70 people! I think there may actually be some precautions needed, such as insurance, first aiders, notifying council etc but I am looking into all this at the moment and I am sure it will not be a problem. If anyone else still wants to join then please let me know quite soon so I have a good idea of numbers. I think the route is nearer to 10 miles than 12 if that makes any of you feel better! I am hoping to have some t-shirts made for the day. Team Jac on the front and maybe something about transplant on the back. Ideas for a good slogan welcome :-) Seb will have to get a wee bandana or something.......I really hope I can get him fit enough for the walk because then he could be the team mascot!
I am having Andrew's gran and his mum's cousin (who is visiting from Canada)for dinner tonight, so I better go and get organised. I keep volunteering to cook for people...I am getting scarily like my mum.
Wednesday, October 15, 2008
6 Month Check up
Well, I will just jump straight in with the good news - I got an excellent report! The bronchoscopy showed much less inflammation in the lungs and absolutely no rejection. Three months ago I had stage 1 rejection (not enough to treat) but this has now gone down to stage zero! My lung function has jumped up to a staggering 97% (Fev1 2.74L). I have a feeling I may be forever chasing the elusive 3% ;-) My chest x-ray, apart from the wires holding my sternum together, is completely normal and my oxygen saturation levels are 100%. My weight has held steady and they seem happy enough with that. My blood pressure was perfect (high blood pressure can be a problem post transplant due to medications) and all my bloods were normal. Now if that doesn't deserve a massive gold shiny star then I don't know what does :-) The doctor said it was my best report to date and he seemed very pleased indeed. I have to go back in 8 weeks for a check up. I would have been allowed longer based on that report if it hadn't been for the early episode of rejection..but better to play safe.
I did mention the problem with sore knee joints, which keeps flaring up. He agrees that it is most likely CF related joint pain and would expect the immunosuppressants to help with this, however it might just be because I have been walking a lot...so this should settle down with time. The reflux is still a bit of a problem but I had my last study of this yesterday (with the nasogastric tube) so I can discuss the report next time I am at clinic.
I had a few problems with the bronchoscopy this time, starting with trying to get IV access. It took an impressive 9 attempts to get a line in (and I had just had three attempts to get bloods before that) and I must admit I was nearly crying by this point, although desperately trying not to! After attempt number seven, I suggested they get a basin of hot water to put my hands in because the room was absolutely freezing, so all my veins were hiding. Thankfully this did help and we finally got a rather precarious venflon in. Then the fun started - mainly due to that fact they could not sedate me enough. Despite 14mg of the sedative medazolam (this is a massive dose!) I was wide awake and talking coherently, mostly saying "Should I be as awake as this?!" I'm not actually sure how I was managing to talk with a mouth guard in and a scope down my throat (although Andrew says it would take more than that to stop me!) The registrar was a bit freaked out, probably by the fact I was staring wide eyed at her as she tried to start the bronch, instead of sleeping as would be expected but they could not safely give me any more medazolam. She was unhappy to continue, especially with me chatting away very lucidly, so they had to call the consultant in. He was a bit perturbed by my behaviour and was more worried I would remember this as a traumatic experience, so he did the bronch as quickly as possible. Back up on the ward I slept for about an hour, before waking and saying to mum "I was just dreaming that the consultant was doing my bronchoscopy, and I was awake and people kept saying I was doing really well, and I was asking when it would be over....but it must have been a dream, because the consultant couldn't have been there!" It wasn't until the next day at clinic when the consultant asked if I had recovered from the day before that I realised it hadn't been a dream and that he had been there! I told him I was very relieved to hear that I had not been having strange dreams about him ;-) I wasn't really that traumatised by it because medazolam affects your memory, so despite the fact I was awake, I only remember it in a dream like way, as if it didn't really happen at all. It is quite surreal. I also realised they must have been rather hasty, as I coughed up a lot of watery blood when I woke up....they do wash outs to check for bugs growing and I swear they must have left 1/2 pint of saline down there! The blood is because they do biopsies (they take quite a few as I am enrolled in numerous studies) but this clears pretty quickly and sometimes I don't get any at all.
After the bronchoscopy, I was trying to convince the nurse that I should actually be allowed home for the night instead of staying in hospital, but they said it was protocol. Pah! Who says you always have to follow protocol?! So I managed to negotiate a couple of hours off the ward instead. I was actually gone for 4 hours but I don't think anyone noticed ;-) We just headed back to mums friends and relaxed and has some dinner. I was so tired from the mornings events that I couldn't have gone anywhere anyway. Once back on the ward, mum had to leave after visiting at 8pm and I was alone with 4 elderly woman in a bay. Well, would the stop talking? Not a chance! Mum had barely left the room when the questions started...'what was I in for' ' Did I have CF' 'Was I 'in education'?' Now, by 'in education' I suspect they meant secondary school or college at a push, so they nearly fell out their beds when I told them I was in fact nearly 30 and married! I decided that saying I was a doctor might finish a couple of them off completely so I just said 'I work in psychiatry'. That was surprising enough for them. As the evening progressed the chatting continued. I got my nebuliser out so they wanted to know what that was and why I was taking it. They then watched me sort out all my medications (transplant patients self medicate on the ward) and then I asked for sterile water so I could make up a saline solution for my sinus wash. So I am sitting there pouring water into this bottle and spooning salt (that I had in a wee tub) into this, before disappearing to the bathroom with it all. I wonder what they thought I was up to? It seemed more amusing to let them wonder. The time ticked on and there was much hilarity, with one of them shouting that they needed a psychiatrist to assess the other one. I kindly informed them that they were all in need of psychiatric assessment but were all probably beyond my help. I then loudly asked the nurse if she would give them all a sleeping tablet so I could get some peace...the nurse agreed that this seemed like a good idea :-) I was also rather amused when the next morning the nurse had to do an inventory of one woman's belongings as she was being moved to ITU after her surgery....it was at this point they found she had 6 cigarette lighters with her. She was only expected to be staying until the weekend! I suspect she had a reserve in case they confiscated one ;-) Ah, the joys of sharing a room...
After clinic yesterday we went up to the ward to try and see my friend Louise, however she just been moved back to ITU so I couldn't visit. I am not sure what has happened but it's rather worrying and at 7 weeks post transplant she shouldn't be back in ITU. There is also another fellow transplant patient (who goes to same CF unit as me) in ITU at the moment. She is 3 1/2 years post transplant but suddenly became unwell 2 weeks ago and has been in ITU since. I bumped into her mum, but there was not any more news at this time, as they are still unsure what is wrong. She is holding steady just now but has a long way to go, so if you can keep them both in your prayers it would be most appreciated. It did really put things into perspective for me, and I am truly grateful that I am doing so well just now and being given the chance to live life to the full. Long may it continue.
Well, I will just jump straight in with the good news - I got an excellent report! The bronchoscopy showed much less inflammation in the lungs and absolutely no rejection. Three months ago I had stage 1 rejection (not enough to treat) but this has now gone down to stage zero! My lung function has jumped up to a staggering 97% (Fev1 2.74L). I have a feeling I may be forever chasing the elusive 3% ;-) My chest x-ray, apart from the wires holding my sternum together, is completely normal and my oxygen saturation levels are 100%. My weight has held steady and they seem happy enough with that. My blood pressure was perfect (high blood pressure can be a problem post transplant due to medications) and all my bloods were normal. Now if that doesn't deserve a massive gold shiny star then I don't know what does :-) The doctor said it was my best report to date and he seemed very pleased indeed. I have to go back in 8 weeks for a check up. I would have been allowed longer based on that report if it hadn't been for the early episode of rejection..but better to play safe.
I did mention the problem with sore knee joints, which keeps flaring up. He agrees that it is most likely CF related joint pain and would expect the immunosuppressants to help with this, however it might just be because I have been walking a lot...so this should settle down with time. The reflux is still a bit of a problem but I had my last study of this yesterday (with the nasogastric tube) so I can discuss the report next time I am at clinic.
I had a few problems with the bronchoscopy this time, starting with trying to get IV access. It took an impressive 9 attempts to get a line in (and I had just had three attempts to get bloods before that) and I must admit I was nearly crying by this point, although desperately trying not to! After attempt number seven, I suggested they get a basin of hot water to put my hands in because the room was absolutely freezing, so all my veins were hiding. Thankfully this did help and we finally got a rather precarious venflon in. Then the fun started - mainly due to that fact they could not sedate me enough. Despite 14mg of the sedative medazolam (this is a massive dose!) I was wide awake and talking coherently, mostly saying "Should I be as awake as this?!" I'm not actually sure how I was managing to talk with a mouth guard in and a scope down my throat (although Andrew says it would take more than that to stop me!) The registrar was a bit freaked out, probably by the fact I was staring wide eyed at her as she tried to start the bronch, instead of sleeping as would be expected but they could not safely give me any more medazolam. She was unhappy to continue, especially with me chatting away very lucidly, so they had to call the consultant in. He was a bit perturbed by my behaviour and was more worried I would remember this as a traumatic experience, so he did the bronch as quickly as possible. Back up on the ward I slept for about an hour, before waking and saying to mum "I was just dreaming that the consultant was doing my bronchoscopy, and I was awake and people kept saying I was doing really well, and I was asking when it would be over....but it must have been a dream, because the consultant couldn't have been there!" It wasn't until the next day at clinic when the consultant asked if I had recovered from the day before that I realised it hadn't been a dream and that he had been there! I told him I was very relieved to hear that I had not been having strange dreams about him ;-) I wasn't really that traumatised by it because medazolam affects your memory, so despite the fact I was awake, I only remember it in a dream like way, as if it didn't really happen at all. It is quite surreal. I also realised they must have been rather hasty, as I coughed up a lot of watery blood when I woke up....they do wash outs to check for bugs growing and I swear they must have left 1/2 pint of saline down there! The blood is because they do biopsies (they take quite a few as I am enrolled in numerous studies) but this clears pretty quickly and sometimes I don't get any at all.
After the bronchoscopy, I was trying to convince the nurse that I should actually be allowed home for the night instead of staying in hospital, but they said it was protocol. Pah! Who says you always have to follow protocol?! So I managed to negotiate a couple of hours off the ward instead. I was actually gone for 4 hours but I don't think anyone noticed ;-) We just headed back to mums friends and relaxed and has some dinner. I was so tired from the mornings events that I couldn't have gone anywhere anyway. Once back on the ward, mum had to leave after visiting at 8pm and I was alone with 4 elderly woman in a bay. Well, would the stop talking? Not a chance! Mum had barely left the room when the questions started...'what was I in for' ' Did I have CF' 'Was I 'in education'?' Now, by 'in education' I suspect they meant secondary school or college at a push, so they nearly fell out their beds when I told them I was in fact nearly 30 and married! I decided that saying I was a doctor might finish a couple of them off completely so I just said 'I work in psychiatry'. That was surprising enough for them. As the evening progressed the chatting continued. I got my nebuliser out so they wanted to know what that was and why I was taking it. They then watched me sort out all my medications (transplant patients self medicate on the ward) and then I asked for sterile water so I could make up a saline solution for my sinus wash. So I am sitting there pouring water into this bottle and spooning salt (that I had in a wee tub) into this, before disappearing to the bathroom with it all. I wonder what they thought I was up to? It seemed more amusing to let them wonder. The time ticked on and there was much hilarity, with one of them shouting that they needed a psychiatrist to assess the other one. I kindly informed them that they were all in need of psychiatric assessment but were all probably beyond my help. I then loudly asked the nurse if she would give them all a sleeping tablet so I could get some peace...the nurse agreed that this seemed like a good idea :-) I was also rather amused when the next morning the nurse had to do an inventory of one woman's belongings as she was being moved to ITU after her surgery....it was at this point they found she had 6 cigarette lighters with her. She was only expected to be staying until the weekend! I suspect she had a reserve in case they confiscated one ;-) Ah, the joys of sharing a room...
After clinic yesterday we went up to the ward to try and see my friend Louise, however she just been moved back to ITU so I couldn't visit. I am not sure what has happened but it's rather worrying and at 7 weeks post transplant she shouldn't be back in ITU. There is also another fellow transplant patient (who goes to same CF unit as me) in ITU at the moment. She is 3 1/2 years post transplant but suddenly became unwell 2 weeks ago and has been in ITU since. I bumped into her mum, but there was not any more news at this time, as they are still unsure what is wrong. She is holding steady just now but has a long way to go, so if you can keep them both in your prayers it would be most appreciated. It did really put things into perspective for me, and I am truly grateful that I am doing so well just now and being given the chance to live life to the full. Long may it continue.
Sunday, October 12, 2008
Another Busy Week!
I have had another rather busy week - I'm almost looking forward to going down to Newcastle today to get a wee rest :-) Tomorrow is my 6 month bronchoscopy and check up!! It's not actually 6 months until the 25th Oct but they are doing the bronch a little early just to fit in with my clinic appointments. I cannot believe it is nearly 6 months since the transplant!! The time has just flown in and I have come so far....however in some respects it does feel like an eternity since I got that call, and it seems even longer since I felt so breathless and unwell. It's funny how your brain has a way of forgetting the difficult times and you start to get used to the new 'normal' - feeling like this is the way it has always been. Sometimes I am really afraid to forget how difficult it was before the transplant because I worry that it will make me appreciate this new life less....however I also understand that you cannot live in the past and the only way to make the most of this opportunity is to move forwards and make the most of each new day.
Making the most of each new day is probably the reason I have been so busy! On Tuesday I sat in on the addictions clinic, which was really interesting and a bit of an eye opener. I am not sure I would be able to work in an area like that full time though, as it is quite emotionally draining and frustrating at times. I was mostly sitting in with the nursing staff so will probably go back and sit in on some medical reviews as well so I can see it from that perspective. On Friday I had the second part of the PBL facilitator training, which involved observing a PBL group as they worked through the process. It was very strange watching this from the other side, as I did PBL twice a week for the first three years at university so am well used to it from the student's perspective. I also realised I was actually 10 years older than these students, but I probably looked younger....not sure if this is a good or bad thing ;-) I really enjoyed the session but hadn't quite appreciated how much work the facilitator should do out with the sessions. They are given notes to read up on, so that they understand what the students should have learnt, in order to give some direction if they are going off course. I was reading up the notes before the session and I could hardly remember any of it from university! It was all about cell cycles and receptors and other things I have long forgotten, so I felt like I was doing all this revision before I even got there. Hopefully if I do get to facilitate a block, I can do one that has some psychiatry in it, as this would be a lot easier for me.
Andrew's friends was staying at the beginning of the week as he had an interview nearby. For the first time in a while Seb well and truly showed me up! I had cooked a roast chicken and took a couple of plates through to the dining room and then went back for the others. I was only gone about 1o seconds and returned to find Seb sitting up on my chair tucking into my roast chicken!! The worst of it was, he wasn't even bothered that I caught him and simply lifted a large chunk of the plate and jumped down before I could catch him. He then had the cheek to rattle his bowl in the hope I would put some chicken in there. I was so embarrassed! Just wait until we get to these training classes next week....
The rest of the week I was working like a busy busy bee on this 'CF and relationship' booklet. Most of this time was spent trying to work out how to use a publishing programme and there was much 'Oh I didn't mean to press that!' 'Where has that graph disappeared to?' 'Why is that heading three times bigger than the others?' before I finally got the hang of it. I have now made a pdf of the whole booklet (it is rather long!) and my friend is kindly proof reading it for me at the moment. Myself and Emily will then need to think about approaching some people regarding publishing, but in the mean time we can hopefully make a downloadable pdf. I will let you know how to access it once we are finished, although it's probably not very interesting if you don't have CF!
I have also had a busy weekend, as I had friends over for dinner last night. I think my meal was quite successful although I had a few timing problems. I can cook each part of the meal fairly well but trying to get all three courses ready at the right time was a bit more difficult. I clearly have a long way to go before I am up to my mum's standards :-)
So, I will blog when I get back from Newcastle, which will be Wednesday if the bronchoscopy is clear, and the end of the week if there is any rejection. Fingers crossed for a clear biopsy! The only reason I have to stay until Wednesday is because I am doing the last part of that study into reflux with the NG tube. At least this is the last one though, so it's not too bad. I am hoping to visit my friend Louise when I am down there, as she is still in HDU. I hadn't updated because I hadn't heard anything for ages and neither had anyone else. It turned out she couldn't contact anyone because she was in ITU very unwell for the first 5 weeks post transplant, but she is now on the HDU ward and progressing slowly. I think she still has a way to go but things are looking a lot more positive now :-)
I have had another rather busy week - I'm almost looking forward to going down to Newcastle today to get a wee rest :-) Tomorrow is my 6 month bronchoscopy and check up!! It's not actually 6 months until the 25th Oct but they are doing the bronch a little early just to fit in with my clinic appointments. I cannot believe it is nearly 6 months since the transplant!! The time has just flown in and I have come so far....however in some respects it does feel like an eternity since I got that call, and it seems even longer since I felt so breathless and unwell. It's funny how your brain has a way of forgetting the difficult times and you start to get used to the new 'normal' - feeling like this is the way it has always been. Sometimes I am really afraid to forget how difficult it was before the transplant because I worry that it will make me appreciate this new life less....however I also understand that you cannot live in the past and the only way to make the most of this opportunity is to move forwards and make the most of each new day.
Making the most of each new day is probably the reason I have been so busy! On Tuesday I sat in on the addictions clinic, which was really interesting and a bit of an eye opener. I am not sure I would be able to work in an area like that full time though, as it is quite emotionally draining and frustrating at times. I was mostly sitting in with the nursing staff so will probably go back and sit in on some medical reviews as well so I can see it from that perspective. On Friday I had the second part of the PBL facilitator training, which involved observing a PBL group as they worked through the process. It was very strange watching this from the other side, as I did PBL twice a week for the first three years at university so am well used to it from the student's perspective. I also realised I was actually 10 years older than these students, but I probably looked younger....not sure if this is a good or bad thing ;-) I really enjoyed the session but hadn't quite appreciated how much work the facilitator should do out with the sessions. They are given notes to read up on, so that they understand what the students should have learnt, in order to give some direction if they are going off course. I was reading up the notes before the session and I could hardly remember any of it from university! It was all about cell cycles and receptors and other things I have long forgotten, so I felt like I was doing all this revision before I even got there. Hopefully if I do get to facilitate a block, I can do one that has some psychiatry in it, as this would be a lot easier for me.
Andrew's friends was staying at the beginning of the week as he had an interview nearby. For the first time in a while Seb well and truly showed me up! I had cooked a roast chicken and took a couple of plates through to the dining room and then went back for the others. I was only gone about 1o seconds and returned to find Seb sitting up on my chair tucking into my roast chicken!! The worst of it was, he wasn't even bothered that I caught him and simply lifted a large chunk of the plate and jumped down before I could catch him. He then had the cheek to rattle his bowl in the hope I would put some chicken in there. I was so embarrassed! Just wait until we get to these training classes next week....
The rest of the week I was working like a busy busy bee on this 'CF and relationship' booklet. Most of this time was spent trying to work out how to use a publishing programme and there was much 'Oh I didn't mean to press that!' 'Where has that graph disappeared to?' 'Why is that heading three times bigger than the others?' before I finally got the hang of it. I have now made a pdf of the whole booklet (it is rather long!) and my friend is kindly proof reading it for me at the moment. Myself and Emily will then need to think about approaching some people regarding publishing, but in the mean time we can hopefully make a downloadable pdf. I will let you know how to access it once we are finished, although it's probably not very interesting if you don't have CF!
I have also had a busy weekend, as I had friends over for dinner last night. I think my meal was quite successful although I had a few timing problems. I can cook each part of the meal fairly well but trying to get all three courses ready at the right time was a bit more difficult. I clearly have a long way to go before I am up to my mum's standards :-)
So, I will blog when I get back from Newcastle, which will be Wednesday if the bronchoscopy is clear, and the end of the week if there is any rejection. Fingers crossed for a clear biopsy! The only reason I have to stay until Wednesday is because I am doing the last part of that study into reflux with the NG tube. At least this is the last one though, so it's not too bad. I am hoping to visit my friend Louise when I am down there, as she is still in HDU. I hadn't updated because I hadn't heard anything for ages and neither had anyone else. It turned out she couldn't contact anyone because she was in ITU very unwell for the first 5 weeks post transplant, but she is now on the HDU ward and progressing slowly. I think she still has a way to go but things are looking a lot more positive now :-)
Monday, October 06, 2008
Busy Busy
I have been quite busy harassing people for my Team Jac project and now have around 60 members :-) It is going to be a riot! I have no idea what I have started..
Other than harassing people, I seem to have been otherwise quite busy. It was my friends 30th birthday recently, so myself and an other friend took her to a lovely restaurant in the city centre - it was a great night and we all enjoyed the meal. It's so good being able to go out and actually enjoy...and finish the food! Also the fact I am not coughing all through the meal makes it so much more relaxing (for everyone concerned ;-)) On Friday I met up with a friend for coffee, which was lovely. We met in the shopping centre so Andrew came over after work and we had a look at some of the outdoor shops because I would like an outdoor coat for walking Seb over the winter. The one I have at the moment I got when I was about 15 and it makes me look like the mitchellin man because it's so big and puffy, haha! I saw a lovely black one but it was rather expensive...maybe for Christmas though :-)
At the weekend we saw Andrew's mum and dad and also went into town to meet some friends for lunch. It's been a long time since I have been in the city centre so we had a wander round the shops and it was so nice to be able to do this. I am pleased to say I did refrain from buying any more clothes. It was a test of will power though!
I had a bit of a stand off with Seb last night during his walk. He tried to run and bark at a jogger (he also does this to cyclists and buses) so I bent down and said 'NO!' loudly and pulled him back. I then asked for a paw before we moved on. Would he give me a paw? Would he heck. He stared off to the side, and refused to look at me. I turned his face round so he looked up at the sky instead. He then turned round completely and tried to sit facing the opposite direction, so I turned him back round. He then became intensely interested in a nearby bush and just kept pretending he couldn't hear me! I really couldn't let him away with it, as that dog trainer told me that I hadn't to give in when he was being obstinate. It took over 5 minutes of this charade before he finally gave in and offered a rather limp paw in my direction. The things I do! He is going to get a fright when he starts his dog training next week....
Tomorrow I am sitting in on an Addictions clinic. My friend works as a doctor in the addictions team, so I was interested to see what they do (I haven't had the chance to cover addictions in my psychiatry training) and also to see if it is something that would interest me in the future. It will also be a good stepping stone back towards work...I am trying to fit in some work related things before I head back in January so that I feel a bit more relaxed and confident about it.
I will leave you with a pic of Seb after a walk in the rain ..
I have been quite busy harassing people for my Team Jac project and now have around 60 members :-) It is going to be a riot! I have no idea what I have started..
Other than harassing people, I seem to have been otherwise quite busy. It was my friends 30th birthday recently, so myself and an other friend took her to a lovely restaurant in the city centre - it was a great night and we all enjoyed the meal. It's so good being able to go out and actually enjoy...and finish the food! Also the fact I am not coughing all through the meal makes it so much more relaxing (for everyone concerned ;-)) On Friday I met up with a friend for coffee, which was lovely. We met in the shopping centre so Andrew came over after work and we had a look at some of the outdoor shops because I would like an outdoor coat for walking Seb over the winter. The one I have at the moment I got when I was about 15 and it makes me look like the mitchellin man because it's so big and puffy, haha! I saw a lovely black one but it was rather expensive...maybe for Christmas though :-)
At the weekend we saw Andrew's mum and dad and also went into town to meet some friends for lunch. It's been a long time since I have been in the city centre so we had a wander round the shops and it was so nice to be able to do this. I am pleased to say I did refrain from buying any more clothes. It was a test of will power though!
I had a bit of a stand off with Seb last night during his walk. He tried to run and bark at a jogger (he also does this to cyclists and buses) so I bent down and said 'NO!' loudly and pulled him back. I then asked for a paw before we moved on. Would he give me a paw? Would he heck. He stared off to the side, and refused to look at me. I turned his face round so he looked up at the sky instead. He then turned round completely and tried to sit facing the opposite direction, so I turned him back round. He then became intensely interested in a nearby bush and just kept pretending he couldn't hear me! I really couldn't let him away with it, as that dog trainer told me that I hadn't to give in when he was being obstinate. It took over 5 minutes of this charade before he finally gave in and offered a rather limp paw in my direction. The things I do! He is going to get a fright when he starts his dog training next week....
Tomorrow I am sitting in on an Addictions clinic. My friend works as a doctor in the addictions team, so I was interested to see what they do (I haven't had the chance to cover addictions in my psychiatry training) and also to see if it is something that would interest me in the future. It will also be a good stepping stone back towards work...I am trying to fit in some work related things before I head back in January so that I feel a bit more relaxed and confident about it.
I will leave you with a pic of Seb after a walk in the rain ..
Friday, October 03, 2008
I have just emailed everyone who has agreed (or provisionally) agreed to join Team Jac, with some updates and details of the walk. If you have not received this and are taking part or just wanted to find out more, then please either email me at weejaqAThotmailDOTcom or leave me your email address in the comments.
Thanks!
Jac
Thanks!
Jac
Wednesday, October 01, 2008
Last Wedding of the Year!
I was at my friends wedding at the weekend, which makes the 5th wedding I have been to this year! I am so glad I have had the transplant because otherwise I think I would have missed most, if not, all the weddings...and instead I have been able to join in all the fun and have a great time. This was a fantastic wedding and I had a great weekend (we were staying the Friday night as well). It was probably helped by the fact all my good school friends were there so I had great company and lots of people to dance with! It was a ceilidh and disco so we got the best of both worlds, and I was up dancing a fair bit. I think my friends boyfriend managed to video us all dancing to 'walk 500 miles' - now is it just a student (not that we are students, but we used to be!) thing that you get into a wee circle, arms round each other, and jump up and down to this song?? We seemed to be the only ones doing this and I assume everyone thought we were mad or very drunk. Never mind eh. I wore the infamous red shoes and not only did they look pretty (in my opinion) but they were quite easy to dance in. Maybe I am just getting more expert at high heels ;-)
We headed back via mum and dads on Sunday, to say goodbye to Corey - he was up visiting because it was Frances Ann's birthday at the weekend - she would have been 24. We had a nice lunch on the Sunday and then Corey had to get to the airport, so we just headed back home. We were both exhausted from the two late nights and could have fallen into bed at tea time. We did however decide it would be good for us to cut the grass instead. I say 'us' because I decided I would now be able to cut the front grass, while Andrew tackled the huge back lawn. I think I did pretty well! It was much harder work than I anticipated but it didn't make me out of breath and I managed quite well. So there is another post transplant first! Seb watched me from the living room window with much curiousity, as if saying 'what on earth are you doing???' I tend to agree with him.
On Monday I tried to recover and also caught up with my friend for coffee, which was nice. Yesterday however I was busy again - attending a wee course! It's 3 half day sessions at the university (so this was the first) looking at how to be a Problem Based Learning (PBL) facilitator for medical students in year 1 and 2. Basically, the medical course is based on PBL sessions - the students meet in groups twice a week to look at medical scenarios. They work out what they need to learn to understand the scenario, make up questions to investigate this and then go away and find out the answers before reporting back at the next session. The facilitator sits in on the sessions and is there to make sure the group are not going way off track and are covering the main objectives. This is how my course at med school was run (we were only the 2nd year to go through this new course) so I am quite familiar with the process. It's interesting looking at it from the other side though. I hope to be allowed some time from work to facilitate a 5 week block for some experience, and maybe in the future this would be a work option for me if I found it interesting.
On the Team Jac front, I now have around 40 volunteers!! I want more though....because I am sure some people will drop out when they think about it a bit more haha. Plus I am plain greedy!! The date is set for Saturday 9th May and the walk will be part of Fife coastal route - 12 miles. I have a list of email addresses for people who have said yes, so if you haven't already contacted me then please do as I will be emailing people shortly! Even if you cannot commit just now but want kept up to date with a view to hopefully joining us then let me know. People are welcome to bring any family or friends who would also like to walk. You are under no obligation to raise sponsorship but I will create a website for people to donate to the 'team' and will also make up some sponsor sheets. Come on, you know you want to....
I was at my friends wedding at the weekend, which makes the 5th wedding I have been to this year! I am so glad I have had the transplant because otherwise I think I would have missed most, if not, all the weddings...and instead I have been able to join in all the fun and have a great time. This was a fantastic wedding and I had a great weekend (we were staying the Friday night as well). It was probably helped by the fact all my good school friends were there so I had great company and lots of people to dance with! It was a ceilidh and disco so we got the best of both worlds, and I was up dancing a fair bit. I think my friends boyfriend managed to video us all dancing to 'walk 500 miles' - now is it just a student (not that we are students, but we used to be!) thing that you get into a wee circle, arms round each other, and jump up and down to this song?? We seemed to be the only ones doing this and I assume everyone thought we were mad or very drunk. Never mind eh. I wore the infamous red shoes and not only did they look pretty (in my opinion) but they were quite easy to dance in. Maybe I am just getting more expert at high heels ;-)
Lyndsay and Colin
The Girls!
Gillian, Stephanie, Lyndsay, Claire and Me
Gillian, Stephanie, Lyndsay, Claire and Me
Claire, Giuseppe, Me, Andrew, Gillian and Pip
We headed back via mum and dads on Sunday, to say goodbye to Corey - he was up visiting because it was Frances Ann's birthday at the weekend - she would have been 24. We had a nice lunch on the Sunday and then Corey had to get to the airport, so we just headed back home. We were both exhausted from the two late nights and could have fallen into bed at tea time. We did however decide it would be good for us to cut the grass instead. I say 'us' because I decided I would now be able to cut the front grass, while Andrew tackled the huge back lawn. I think I did pretty well! It was much harder work than I anticipated but it didn't make me out of breath and I managed quite well. So there is another post transplant first! Seb watched me from the living room window with much curiousity, as if saying 'what on earth are you doing???' I tend to agree with him.
On Monday I tried to recover and also caught up with my friend for coffee, which was nice. Yesterday however I was busy again - attending a wee course! It's 3 half day sessions at the university (so this was the first) looking at how to be a Problem Based Learning (PBL) facilitator for medical students in year 1 and 2. Basically, the medical course is based on PBL sessions - the students meet in groups twice a week to look at medical scenarios. They work out what they need to learn to understand the scenario, make up questions to investigate this and then go away and find out the answers before reporting back at the next session. The facilitator sits in on the sessions and is there to make sure the group are not going way off track and are covering the main objectives. This is how my course at med school was run (we were only the 2nd year to go through this new course) so I am quite familiar with the process. It's interesting looking at it from the other side though. I hope to be allowed some time from work to facilitate a 5 week block for some experience, and maybe in the future this would be a work option for me if I found it interesting.
On the Team Jac front, I now have around 40 volunteers!! I want more though....because I am sure some people will drop out when they think about it a bit more haha. Plus I am plain greedy!! The date is set for Saturday 9th May and the walk will be part of Fife coastal route - 12 miles. I have a list of email addresses for people who have said yes, so if you haven't already contacted me then please do as I will be emailing people shortly! Even if you cannot commit just now but want kept up to date with a view to hopefully joining us then let me know. People are welcome to bring any family or friends who would also like to walk. You are under no obligation to raise sponsorship but I will create a website for people to donate to the 'team' and will also make up some sponsor sheets. Come on, you know you want to....
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