I didn't realise it was quite so long since I last blogged! I didn't do my usual year in photos summary - largely because this blog is currently open (i.e no sign in) so I think its best not to share personal photos :) It was also hard to sum up the year - 2018 was quite hard going treatment wise and I spent the entire time just praying for my lung function to stop dropping! I did still have a good year though - some lovely family holidays and the ongoing privilege of watching Estelle flourish and thrive!
I had a review appointment a couple of weeks ago and the results were a bit disappointing, but could have been much worse. My lung function was down again, but less of a drop than it's been for a while. Over the past 18 months it has dropped on average 100ml per month (at most 200ml and the least being 50ml). This time it was a 40ml drop. So this is hopefully a sign that radiotherapy has done something! However what I need is it to stop dropping altogether, and the doctor was concerned it could be an ongoing trickle down. We decided to change one of my anti rejection drugs to see if that could suppress the immune reaction a bit more - so far it's making me quite nauseated but I am hoping that will settle when I get used to it. The doctor also wanted to enrol me in the trial I had mentioned before I started ECP. Although I might be on the placebo, I don't really have any other options just now so it's worth a go. I also believe that after the 6 month period, I could get the active drug for a year. It's a drug used in pulmonary fibrosis to reduce the lung scarring - which is also part of the chronic rejection process, so may be helpful. I'm willing to do anything to stop the decline! In order to assess suitability I need a lung CT scan (done today) and bronchoscopy, which I will get in few weeks - and also will get further lung function at that time. So it's back to the waiting, hoping and praying for better results next time.
In the middle of this we also discovered the radiotherapy had induced an early menopause (as ovaries are near the radiation field). I was glad to get this diagnosed as have been feeling pretty awful and wasn't sure what was going on!!! I feel a lot better on HRT, which I will need to protect bone health..as well as my sanity!
I'm still not back to work yet. I had hoped to return after my most recent appointment, as I had been positive it would be a good result. As several tests needed done I have decided to stay off until these are completed and hopefully I have a better idea of what's next. Physically I am definitely improving from the radiotherapy - I am less tired than pre-Christmas and generally feel better, although do feel more breathless on exertion now. Mentally, it's hard to be in a constant state of uncertainty, while watching my lung function dwindling. I've had much lower in the past and know I will somehow cope if it keeps dropping....but you get used to the amazing feeling of normal lungs after transplant and that's hard to give up. So I want to get back to work, to feel more normal again....but I am so acutely aware that if my lung function keeps falling, then work will become very difficult to manage. I know I will need all my energy and focus for Estelle!
I don't have any new years resolutions - why burden myself with extra tasks! What I hope for though, is a return to normality. To have stable lung function, to not worry constantly about what's going to happen next, to be back at work, to have something more interesting to talk about than health! I don't want an exceptional year, or an exciting year or a year of great achievements....I just want a boring, normal, no drama year!!!
Monday, January 21, 2019
Monday, December 03, 2018
Festive Vibes
I was back down for transplant clinic 10 days ago for my first review since radiotherapy. My lung function was down from 1.5 litre (59%) to 1.29 L (50%). This doesn't really tell us anything about radiotherapy success yet, as most of this lost could have been pre-treatment. The consultant is hoping it might start to stabilise at this level and it will be reviewed again in January. I'm going to be pretty nervous at that point as I desperately need to see some plateau!
I had been starting to feel better after the cold type virus and was actually feeling not too bad for clinic. Unfortunately I was only recovered a few days and have not been well since. It started with what I thought was a terrible migraine last weekend, but then I developed a fever. I got checked out at clinic and my inflammatory markers in my blood were raised - they thought most likely viral cause as the cells that fight viruses (lymphocytes) were very low. I've continued to have headaches for the past week but the fever is settled now and my bloods are much better. It's unclear whether my sinuses might also be contributing but hopefully whatever it is will be 100% gone soon!
I did manage to get my tree up last night and Estelle is getting really excited about Christmas now. They had a Santa parade locally, with real reindeer pulling the sleigh. I was more excited than Estelle about the reindeer haha. I am hoping all these viral things clear for Christmas and I have some more energy to really enjoy the festive period with my family. It wont be long before I can start counting down the sleeps...
I had been starting to feel better after the cold type virus and was actually feeling not too bad for clinic. Unfortunately I was only recovered a few days and have not been well since. It started with what I thought was a terrible migraine last weekend, but then I developed a fever. I got checked out at clinic and my inflammatory markers in my blood were raised - they thought most likely viral cause as the cells that fight viruses (lymphocytes) were very low. I've continued to have headaches for the past week but the fever is settled now and my bloods are much better. It's unclear whether my sinuses might also be contributing but hopefully whatever it is will be 100% gone soon!
I did manage to get my tree up last night and Estelle is getting really excited about Christmas now. They had a Santa parade locally, with real reindeer pulling the sleigh. I was more excited than Estelle about the reindeer haha. I am hoping all these viral things clear for Christmas and I have some more energy to really enjoy the festive period with my family. It wont be long before I can start counting down the sleeps...
Monday, November 12, 2018
Slowly Slowly!
It's now just over three weeks post treatment. Overall there have been some improvements in my energy levels - I haven't been napping during the day and sometimes making it past 8.30 before going to bed haha.
Unfortunately I've had a nasty cold virus over the past 10 days and it's taking a while to fully clear - which is not surprising given my immune system is suppressed. Estelle had something similar for a couple of weeks so it's probably the same thing. It's left me feeling a bit chesty at the moment and short of breath - so it's even harder to assess how I am overall. It's horrible feeling short of breath though....brings back a lot of memories. Hopefully it will clear up over this week and I will get a clearer idea of how things really are!
I am however definitely doing more around the house and not feeling quite as brain dead. Estelle announced that she thought I was getting a bit better, so I must be moving in the right direction :-)
Now I just need to be tip top for Christmas!!
It's now just over three weeks post treatment. Overall there have been some improvements in my energy levels - I haven't been napping during the day and sometimes making it past 8.30 before going to bed haha.
Unfortunately I've had a nasty cold virus over the past 10 days and it's taking a while to fully clear - which is not surprising given my immune system is suppressed. Estelle had something similar for a couple of weeks so it's probably the same thing. It's left me feeling a bit chesty at the moment and short of breath - so it's even harder to assess how I am overall. It's horrible feeling short of breath though....brings back a lot of memories. Hopefully it will clear up over this week and I will get a clearer idea of how things really are!
I am however definitely doing more around the house and not feeling quite as brain dead. Estelle announced that she thought I was getting a bit better, so I must be moving in the right direction :-)
Now I just need to be tip top for Christmas!!
Monday, October 29, 2018
Aftermath!
It's been 10 days since my last treatment now and I'm still exhausted. In fairness the leaflet they gave me did say that the symptoms might be worse for couple weeks after finishing, as the radiotherapy is still acting. I've still been having nausea and reduced appetite, with things tasting a bit weird, although this is maybe getting a bit better. Still can't drink cappuccino though haha.
I'm still struggling with the fatigue. This is the side effect that can last the longest - having spoken to a few people who've had the treatment, it's not uncommon to last a few months. I've been trying to do a bit more (e.g took Seb along our street last night) but find that even small tasks take it out of me. I'm also finding my concentration is poor.....as if my brain is tired and fuzzy. I've not been meeting up with friends or family because of this, and feel quite happy just relaxing on my own at the moment. I am hoping level of fatigue will start to dwindle soon, even if it might take longer to be back to 100%.
I am back in Newcastle on the 22nd November, although as I mentioned before, we expect the lung function to be down from last review in August. Hopefully it will give us another baseline to work things out from, but the stabilisation might not be evident until well into the new year.
I'll keep on keeping on!
I'm still struggling with the fatigue. This is the side effect that can last the longest - having spoken to a few people who've had the treatment, it's not uncommon to last a few months. I've been trying to do a bit more (e.g took Seb along our street last night) but find that even small tasks take it out of me. I'm also finding my concentration is poor.....as if my brain is tired and fuzzy. I've not been meeting up with friends or family because of this, and feel quite happy just relaxing on my own at the moment. I am hoping level of fatigue will start to dwindle soon, even if it might take longer to be back to 100%.
I am back in Newcastle on the 22nd November, although as I mentioned before, we expect the lung function to be down from last review in August. Hopefully it will give us another baseline to work things out from, but the stabilisation might not be evident until well into the new year.
I'll keep on keeping on!
Monday, October 15, 2018
One week to go...
I have completed 4 weeks of treatment and this is now my 5th and final week! I can't say how relieved I am. The last week has been increasingly difficult and I more or less spent all weekend in bed. The exhaustion is like nothing I have experienced before.... those many nights spent awake with Estelle as a baby don't even come close! I have developed a new ability to go into coma like naps, where I don't hear the door bell or phone ringing. My limbs feel so heavy, as if filled with lead weights and I'm finding it hard to think clearly. It's a very odd experience and frustrating for someone who is used to being a busy bee. The days immediately after treatment are the worst, so today will hopefully be slightly better, before treatment again tomorrow. I have spent most of my time watching netflix, but I couldn't even manage that yesterday.
The last 3 treatments have been difficult, as they have been having problems with my alignment. Procedures are taking over 1 hr and on Friday we had to abandon after 1hr 20min as they just couldn't get me lying in the right position for treatment. After discussion with the doctor and physics department they concluded that the fatigue was changing the way I was lying on the trolley. I think during the original scans I was probably lying in a more tense position - holding my spine away from the cold and hard trolley, and could maintain that for the 40min. Based on original scans, various lines were drawn on me with permanent marker, to help align future treatments. So basically these lines were now inaccurate as my position was different. They work in millimetres, so any change throws everything off. They need the delivery of radiation to be very accurate, so that they hit lymph nodes only (which are tiny) and don't damage nearby organs. Therefore they redid the scans and markings on friday afternoon, and did treatment after this. So hopefully these new lines will help the last 2 treatments run smoothly!
I am so looking forward to finishing now. Although I know it will take some time to recover, at least I know I will be improving from that point. I have to phone transplant team to sort appointment once finished, but this will probably be another month away as there is no point assessing too soon. I'm glad there will be a little break, as I am nervous about the next assessment. It's hard for me to know what my lung function is doing, as everything seems hard work just now....but that might not be my lungs as such. I haven't been able to walk Seb or do things that would give me a better idea of how my lungs are coping.....hopefully that can start to build up after I finish. I have managed to maintain my weight so far - despite a lot of nausea. I am taking some high calorie supplements to try and keep me topped up! My blood tests have also been good - which shows my bone marrow is coping with the treatment. I had to get some extra bloods on Friday, but since no one has phoned I assume they were ok for tomorrows treatment to still go ahead. I also seem to have avoided having any skin reactions, which are apparently quite common. All little positives to focus on.
Estelle is coping well with all the changes and her mummy being out of action. She is enjoying the daddy and granny attention! She was with us at the hospital on friday for 5 hours and behaved really well.....better than I did haha! It's hard for her to understand what's going on but she is looking forward to me finishing treatment and being back to normal!
Here's to one more week....!!!
The last 3 treatments have been difficult, as they have been having problems with my alignment. Procedures are taking over 1 hr and on Friday we had to abandon after 1hr 20min as they just couldn't get me lying in the right position for treatment. After discussion with the doctor and physics department they concluded that the fatigue was changing the way I was lying on the trolley. I think during the original scans I was probably lying in a more tense position - holding my spine away from the cold and hard trolley, and could maintain that for the 40min. Based on original scans, various lines were drawn on me with permanent marker, to help align future treatments. So basically these lines were now inaccurate as my position was different. They work in millimetres, so any change throws everything off. They need the delivery of radiation to be very accurate, so that they hit lymph nodes only (which are tiny) and don't damage nearby organs. Therefore they redid the scans and markings on friday afternoon, and did treatment after this. So hopefully these new lines will help the last 2 treatments run smoothly!
I am so looking forward to finishing now. Although I know it will take some time to recover, at least I know I will be improving from that point. I have to phone transplant team to sort appointment once finished, but this will probably be another month away as there is no point assessing too soon. I'm glad there will be a little break, as I am nervous about the next assessment. It's hard for me to know what my lung function is doing, as everything seems hard work just now....but that might not be my lungs as such. I haven't been able to walk Seb or do things that would give me a better idea of how my lungs are coping.....hopefully that can start to build up after I finish. I have managed to maintain my weight so far - despite a lot of nausea. I am taking some high calorie supplements to try and keep me topped up! My blood tests have also been good - which shows my bone marrow is coping with the treatment. I had to get some extra bloods on Friday, but since no one has phoned I assume they were ok for tomorrows treatment to still go ahead. I also seem to have avoided having any skin reactions, which are apparently quite common. All little positives to focus on.
Estelle is coping well with all the changes and her mummy being out of action. She is enjoying the daddy and granny attention! She was with us at the hospital on friday for 5 hours and behaved really well.....better than I did haha! It's hard for her to understand what's going on but she is looking forward to me finishing treatment and being back to normal!
Here's to one more week....!!!
Wednesday, September 26, 2018
Total Lymphoid Irradiation (TLI)
So I have finally started my radiotherapy treatment and this is week 2 (of 5). It seemed a long wait to get going but I am sure it will be over before I know it! I think its quite difficult for people to understand what exactly I am having done, as you most commonly hear about radiotherapy in the context of cancer. So I thought I would blog about what it actually is!
What is Total Lymphoid Irradiation?
It's where radiation is applied to all the main groups of lymph nodes in the body - these are found on the sides of the neck, under arms, chest, abdomen and groin. The spleen is also included.
The lymph nodes are major part of immune system and contain lots of immune cells. The purpose of nuking them with radiation (basically x-rays at higher dose) is to temporarily destroy immune cells with the aim of suppressing the immune response.
What's that got to do with chronic rejection?
Chronic rejection after lung transplant isn't really that well understood, but it's to do with my own body recognising the lungs as foreign, and mounting an immune response (e.g essentially attacking them). This immune response can get carried away, causing ongoing damage to the lungs. The radiotherapy aims to dial down the immune system and hopefully switch off this errant response. The balance is to suppress the immune system enough to stop the process which is damaging my lungs, but not suppress it to the point I can't fight infection.
Is it the same as radiotherapy for cancer?
It's the same machine, but with a lower dose of radiation - because the aim is not to kill cancer cells but to dial down the immune function. Cancer treatment is normally targeted with high intensity at one part of the body, where as this is lower intensity but over a very large area.
What is the treatment like?
I have to lie on a metal trolley - this is not good for bony backed people like me! I have a mask to wear over my upper torso (this was made before treatment to fit me) - the sole purpose is to keep me in an exact position. It is clipped down to the trolley on either side, so you really can't move! It's not sore, but very snug fitting.
I also have various crosses and lines drawn on me with permanent marker (covered with dressings) that will remain for treatment - these are for getting me in the right alignment. They then take scans of all the treatment areas at each session - to ensure everything is lined up to target lymph nodes accurately (and to avoid my organs). They then they move on to the treatments. The actual radiation treatment only takes minutes per area, but because of the scans, I have to remain in the same position for about 40 mins total. I am finding this quite hard! I tend to recite various lists in my head (e.g all the animals starting with 'a' I can think of). Otherwise I start thinking about the mask being tight, feeling the trolley digging into my back, and getting overwhelmed with the urge to move! I can't wear headphones as the mask covers my ears, but they did say I could bring a CD and they can play it, so will maybe try this.
I will have 2 sessions per week for minimum of 5 weeks - sessions could be delayed if my immune cells drop too low. I get bloods checked weekly and see the consultant once a week.
What does it feel like?
I don't feel anything when they do the radiation treatment. It's just like getting an x-ray. I am not 'radioactive' afterwards. I just feel stiff from lying so still!
What are the side effects?
The main side effect is exhaustion and fatigue. This occurs in all types of radiotherapy but more often in TLI due to the large area being treated. It's not well understood why it occurs. I wasn't too bad the first week but am really starting to feel it now. It's an odd feeling - like the sense that you your battery is drained and I just can't shake it off. I have a feeling I might be quite wrecked by the end of this!
Radiotherapy side effects also depend on areas of body being treated - because lots of areas are being treated this can be quite varied. At the moment I am having some problems with nausea - probably worse because of nodes in abdomen being treated. I've got meds for it but haven't been able to drink coffee.....this is an emergency for me haha!! My taste has also been really strange (apparently salivary glands are sensitive to radiation).
What happens after?
It takes a while for the body to recover after and for the fatigue to pass. The consultant suggested about 6 weeks to recover post treatment, but it varies a lot between people and it will also depend on what's happening with my lung function.
How will we know if it's worked?
The only measure of whether it works will be my lung function. I have not had this checked since August clinic - because the treatment plan would be the same regardless of the current number. To be honest it's quite nice not knowing what it is at the moment - it's so distressing watching the numbers fall when I can't do anything about it. The plan will be to get reviewed by newcastle after treatment ends. At this point we would expect my lung function to be lower than last measure - because it will have fallen in interim period. The actual effects of stabilisation could take 3-6 months post treatment to occur, so I can also expect further decline in this period. If the radiotherapy works then my lung function will hopefully stop falling (fingers crossed stopping at a level I can still function well) and in some cases might improve a little.
What if it doesn't work?
I'm not scared of radiotherapy but I am scared of it not working. If my lung function continues to fall despite treatment, then there are not really other options. How quickly it falls is an unknown entity - it could randomly slow down/speed up for unclear reasons. Although I am always hopeful that new treatments become available! People have asked me about second lung transplants. These are rare but not impossible. Second transplants are complicated - the surgery is more difficult, the matching to donor lungs more complicated and it's generally high risk. I have however made it really clear to my team that I would want to be assessed and considered for this option if it came to this.
However,we are a long way from this stage and at the moment my focus is on radiotherapy working. It simply has to!!
I will blog more when nearer end of treatment.. but any questions please just ask!
What is Total Lymphoid Irradiation?
It's where radiation is applied to all the main groups of lymph nodes in the body - these are found on the sides of the neck, under arms, chest, abdomen and groin. The spleen is also included.
The lymph nodes are major part of immune system and contain lots of immune cells. The purpose of nuking them with radiation (basically x-rays at higher dose) is to temporarily destroy immune cells with the aim of suppressing the immune response.
What's that got to do with chronic rejection?
Chronic rejection after lung transplant isn't really that well understood, but it's to do with my own body recognising the lungs as foreign, and mounting an immune response (e.g essentially attacking them). This immune response can get carried away, causing ongoing damage to the lungs. The radiotherapy aims to dial down the immune system and hopefully switch off this errant response. The balance is to suppress the immune system enough to stop the process which is damaging my lungs, but not suppress it to the point I can't fight infection.
Is it the same as radiotherapy for cancer?
It's the same machine, but with a lower dose of radiation - because the aim is not to kill cancer cells but to dial down the immune function. Cancer treatment is normally targeted with high intensity at one part of the body, where as this is lower intensity but over a very large area.
What is the treatment like?
I have to lie on a metal trolley - this is not good for bony backed people like me! I have a mask to wear over my upper torso (this was made before treatment to fit me) - the sole purpose is to keep me in an exact position. It is clipped down to the trolley on either side, so you really can't move! It's not sore, but very snug fitting.
I also have various crosses and lines drawn on me with permanent marker (covered with dressings) that will remain for treatment - these are for getting me in the right alignment. They then take scans of all the treatment areas at each session - to ensure everything is lined up to target lymph nodes accurately (and to avoid my organs). They then they move on to the treatments. The actual radiation treatment only takes minutes per area, but because of the scans, I have to remain in the same position for about 40 mins total. I am finding this quite hard! I tend to recite various lists in my head (e.g all the animals starting with 'a' I can think of). Otherwise I start thinking about the mask being tight, feeling the trolley digging into my back, and getting overwhelmed with the urge to move! I can't wear headphones as the mask covers my ears, but they did say I could bring a CD and they can play it, so will maybe try this.
I will have 2 sessions per week for minimum of 5 weeks - sessions could be delayed if my immune cells drop too low. I get bloods checked weekly and see the consultant once a week.
What does it feel like?
I don't feel anything when they do the radiation treatment. It's just like getting an x-ray. I am not 'radioactive' afterwards. I just feel stiff from lying so still!
What are the side effects?
The main side effect is exhaustion and fatigue. This occurs in all types of radiotherapy but more often in TLI due to the large area being treated. It's not well understood why it occurs. I wasn't too bad the first week but am really starting to feel it now. It's an odd feeling - like the sense that you your battery is drained and I just can't shake it off. I have a feeling I might be quite wrecked by the end of this!
Radiotherapy side effects also depend on areas of body being treated - because lots of areas are being treated this can be quite varied. At the moment I am having some problems with nausea - probably worse because of nodes in abdomen being treated. I've got meds for it but haven't been able to drink coffee.....this is an emergency for me haha!! My taste has also been really strange (apparently salivary glands are sensitive to radiation).
What happens after?
It takes a while for the body to recover after and for the fatigue to pass. The consultant suggested about 6 weeks to recover post treatment, but it varies a lot between people and it will also depend on what's happening with my lung function.
How will we know if it's worked?
The only measure of whether it works will be my lung function. I have not had this checked since August clinic - because the treatment plan would be the same regardless of the current number. To be honest it's quite nice not knowing what it is at the moment - it's so distressing watching the numbers fall when I can't do anything about it. The plan will be to get reviewed by newcastle after treatment ends. At this point we would expect my lung function to be lower than last measure - because it will have fallen in interim period. The actual effects of stabilisation could take 3-6 months post treatment to occur, so I can also expect further decline in this period. If the radiotherapy works then my lung function will hopefully stop falling (fingers crossed stopping at a level I can still function well) and in some cases might improve a little.
What if it doesn't work?
I'm not scared of radiotherapy but I am scared of it not working. If my lung function continues to fall despite treatment, then there are not really other options. How quickly it falls is an unknown entity - it could randomly slow down/speed up for unclear reasons. Although I am always hopeful that new treatments become available! People have asked me about second lung transplants. These are rare but not impossible. Second transplants are complicated - the surgery is more difficult, the matching to donor lungs more complicated and it's generally high risk. I have however made it really clear to my team that I would want to be assessed and considered for this option if it came to this.
However,we are a long way from this stage and at the moment my focus is on radiotherapy working. It simply has to!!
I will blog more when nearer end of treatment.. but any questions please just ask!
Wednesday, August 15, 2018
Plan B
I've not updated for ages because we have basically been operating on a wait and see basis for 4 months! I have now had 16 ECP treatments, over 4 months and was back at Newcastle for review yesterday. I have been going down every 4 weeks and the last review the drop in lung function was less than before, so we had all hopes pinned on turning a corner. However yesterday was biggest drop in a while (over 200ml) which takes me to a lung function of 1.5 Litre (59%) - it was just over 2 litre at start of ECP in April (79%) and 3 litres last year (109%). They would expect stabilisation by this point, and quite frankly, we don't have time to sit about waiting now. Below 1 litre it is likely I will start to get quite symptomatic and it can now take the radiotherapy 3-6 months to take effect, so likely further decline in interim.
So plan is now for Total Lymphoid Irradiation (radiotherapy). They basically blast the areas that produce immune cells to reduce the amount being released - the idea being to halt the immune process which is causing the rejection. The immune process going on in my lungs has just got carried away - and it results in scarring of small airways (irreversible) hence the decline in lung function.
The process will be twice a week for minimum 5 weeks. It can take longer if white cells (immune cells) drop dangerously low, and then need to delay treatments. It's balance between slowing down immune response without leaving me wide open to infection. The main side effect is exhaustion.
I wont be able to go to work and will need to avoid as many bugs and germs as I can. I am meeting with the consultant next week, so will get more information about the treatment and when due to start. Plan is as urgently as possible.
In meantime I have ECP next week and will get this anyway (as I might be worse without) then that will be stopped and arrangements made to remove the permcath line. I wont be sorry to see the permcath go!
I am so disappointed that ECP has not worked out....I had many hopes pinned on its success and also hoped it would be the ideal longer term solution for keeping me well. However at the end of the day, I am also so glad I was funded and at least had the opportunity to try it - otherwise there would always be a huge "what if?!"
Now I need to shift my focus and accept that plan A hasn't worked and be very grateful we have a plan B! It needs to work - it's not really an option for it not to!! I am staying positive and hoping everything happens for a reason and it's meant to have worked out this way. Onwards and upwards...
So plan is now for Total Lymphoid Irradiation (radiotherapy). They basically blast the areas that produce immune cells to reduce the amount being released - the idea being to halt the immune process which is causing the rejection. The immune process going on in my lungs has just got carried away - and it results in scarring of small airways (irreversible) hence the decline in lung function.
The process will be twice a week for minimum 5 weeks. It can take longer if white cells (immune cells) drop dangerously low, and then need to delay treatments. It's balance between slowing down immune response without leaving me wide open to infection. The main side effect is exhaustion.
I wont be able to go to work and will need to avoid as many bugs and germs as I can. I am meeting with the consultant next week, so will get more information about the treatment and when due to start. Plan is as urgently as possible.
In meantime I have ECP next week and will get this anyway (as I might be worse without) then that will be stopped and arrangements made to remove the permcath line. I wont be sorry to see the permcath go!
I am so disappointed that ECP has not worked out....I had many hopes pinned on its success and also hoped it would be the ideal longer term solution for keeping me well. However at the end of the day, I am also so glad I was funded and at least had the opportunity to try it - otherwise there would always be a huge "what if?!"
Now I need to shift my focus and accept that plan A hasn't worked and be very grateful we have a plan B! It needs to work - it's not really an option for it not to!! I am staying positive and hoping everything happens for a reason and it's meant to have worked out this way. Onwards and upwards...
Wednesday, May 30, 2018
Kirsty
I still quite can't believe that my dear friend Kirsty has gone. She passed away on 26th May at age 34 - although I knew she was very unwell, she had been there before and always pulled through. She seemed invincible. We used to have morbid discussions about who got to die first, who was the most unwell at any one time and who could outdo the other in their medical dramas - the kind of humour that comes from a lifetime of being acutely aware that our time here is fragile and all too short. Also the type of humour that made Kirsty the headstrong, vivacious, fearless and bloody minded woman that she was.
I knew Kirsty originally through the old CF forums, as we were never allowed to mix in real life due to cross infection. She was well known in the CF community and part of a group of Glasgow CFers who were all around the same age. Sadly most of them are no longer here - Anders, Victoria and Kirsty's dearest friend Nicola, to name but a few. I remember seeing Kirsty at clinic one day sitting across the waiting room from me. She was wearing knee high red boots and I remember thinking 'wow, I wish I had the guts to wear those to clinic!'
We were able to actually meet after our transplants - Kirsty having hers the year after mine. We came together to help Victoria organise the Masquerade Ball, and there formed a fundraising trio not to be reckoned with. It was when I really got to know Kirsty that I saw behind the dark humour, stunning makeup, outrageous clothes, tattoos, many wigs... and I saw one of the most generous and kind people I have ever known. She was scatty, always late, head in the clouds half the time, but if you really needed her, she was there.
That first ball was amazing success and one of the most memorable moments was Kirsty singing the song "Hero" and dedicating it to her donor. She had to steal the show of course!! You can see her singing it on YouTube https://www.youtube.com/watch?v=YD9w8OpWWEg&feature=share
There followed a whirl of running organ donor desks, attending advocate weekends in London, speaking at schools, organising another charity ball, halloween night, swap shop and so on. A friendship forged through the shared experience of CF, transplant and wanting to live life to the full.
I remember one of the first Live Life Give Life advocate weekends. I was sharing a room with Kirsty and Victoria and they were both set for a night on the town. We were in a pretty rough area and ended up at a dodgy club where a fight broke out (Kirsty totally unaware of course). My overwhelming memory of that night is that fact that in each photo my blusher got darker and darker...because every 2 mins Kirsty kept getting here blusher out and "topping" me up because it wasn't drag queen enough for her liking! I also remember having to stop at a shop on the way back to the hotel because she needed to buy sweeties. Kirsty was well known for her love of sweeties....diabetes or not! She could inhale entire bags of haribo with ease.
All who knew her will know about her unique fashion style :-) I remember she came round to my house to give mum a spray tan for her holidays. She came straight from her work (mac at the time) and was wearing cat ears - because it was a cat ears kind of day. She would brighten up the transplant clinic teams day with her outfits and her shoes were something to behold...you never really knew what she would turn up wearing.
Our fundraising came to a halt as Victoria became more unwell, and sadly died last January. At the same time I became a mummy and Kirsty had become a humanist celebrant, which tied up her weekends. She loved this job so much and I am sure brought so much happiness to many on their special day. Kirsty's own special day was a big surprise. She had invited her family and friends to a local pub for a casual meal to celebrate her engagement. However, it was in fact her wedding!!! She didn't want people making a fuss and feeling they had to buy presents, so just sprung it on us! She wore a short white dress with tartan ruffle at the back and her high top white trainers :-) She looked stunning as ever and changed her Miss Geddes necklace to a Mrs Harvey one after the ceremony. I am so glad she had her Dougie - who saw her through her decline in health towards transplant (piggy backing her everywhere as she wouldn't use a wheelchair), through her life saving surgery, the loss of her best friend Nicola, and of course with her through the complications in recent times. I am so glad they got to travel far and wide together, have their fur babies and, honestly, to do more in one short life time than most people ever manage.
When I was diagnosed with chronic rejection last year, Kirsty was one of the first people I told -because I knew she would just get it. She phoned immediately and offered reassurance.... but also told me she had just conducted a wedding in the morning and admitted to hospital in the afternoon with sepsis so had outdone me again! She was strangely proud of this skill..
I was glad that Kirsty was able to get to know Estelle and she loved hearing the funny stories. Kirsty gave me a family photoshoot as a gift for Estelle's arrival - I had to laugh that she had made sure they accepted pets as well, so that Seb could be in the photo too :-) Estelle was mesmerised by Kirsty - after we visited Kirsty in hospital a few weeks ago, she came home and asked if I could draw a hello kitty on her neck like Kirsty's tattoo! She had to settle for a glitter mermaid tattoo at a party, which Kirsty thoroughly approved of. Estelle also now has the giant fluffy talking unicorn Kirsty brought me one Christmas "I've got your present but I didn't have wrapping paper so it's in a black bin bag!" For my birthday last year she got me and Estelle matching panda purses - mine is used to store all my daily medicines I need when out and about, so there is always a little reminder of her. Estelle was with me when I most recently saw Kirsty and little did I know it would be for the last time. I could see how unwell she was but she was still fighting and determined to get through (and trying to get back on to the liver transplant list, as she also urgently needed a new liver). My parting words to her were to "stop trying to be more dramatic than me and get fatter!" Kirsty would not have wanted anything else. She did not do schmaltz. She hated being called inspirational, or courageous. She was dealt difficult cards and she coped the best way she knew how - by steam rolling ahead and not letting anything keep her down.
Kirsty truly lived a life worth living.
Saturday, April 14, 2018
All systems go!
After the last couple of months passed so slowly waiting on funding decision, it's suddenly all systems go! I met the ECP team on Thursday - the nurses were so lovely and reassuring, so I am starting treatment on Monday! It will be 2 consecutive days ever 2 weeks for 3 months - then review response (ie. what lung function is doing) and might be every 2 weeks for another 3 months, or monthly. It was a bit unclear at this stage because I will be the first lung transplant rejection patient to go through the unit, so the protocol might vary to that for other conditions. The good news was that because i will have permcath line the process should be much faster than expected - possibly only couple hours (plus the setting up etc) - we shall see on Monday.
I think I understand the process a bit better now. Essentially they will take out blood, which goes through a machine (looks quite like dialysis). The blood is centrifuged (spun) to separate out the white cells (immune cells). They collect a small amount (about 4% circulating cells) and put the other blood components back in to me. A photo-activating drug is then added to the white cells and UV light is applied (this is all in the machine) - this process will damage those T cells (specific type white cell) and they will die off once back in my body. The damaged/dying cells trigger the body to eventually release specialised T regulator cells. These cells are responsible for managing the immune response - they get things under control and dampen down inflammatory processes. It is thought that people post transplant with rejection have low levels of T-regulator cells - which means the immune reactions towards the transplanted lungs can go unchecked. The theory is that by increasing these T-regulator cells you can slow down or stabilise the immune reaction against the lungs. Since it is only affecting a very specific cell, then it doesn't affect the other immune cells required to fight off infections. So I wont be more at risk of infection, which is excellent.
The process normally involves putting a wide bore cannula in one arm to remove blood, and another in the other arm to put it back in at same time. My veins are barely good enough to get blood samples at the best of times. So this is why I need the permcath. I had this put in yesterday. Essentially they make incision in neck to feed tube into jugular vein, to direct access the heart chambers. The other end is tunnelled under the skin for a few inches (this reduces risk of getting infected) and pops out again on the chest wall (few inches under clavicle) and stitched in place. There are a couple of access ports at the end - one for blood in, and one for blood out. It was put in under local anaesthetic and the procedure itself was ok, but it was much sorer than I expected afterwards! The tube is thicker than I had imagined (my previous ports being very narrow tubes in comparison) but it should settle down and in a couple of weeks be more embedded. I will have to be really careful it doesn't get pulled out, or infected - Estelle has been warned not to touch!! She is very interested in the whole thing and has asked to inspect it several times already. It's a bit cumbersome but should be ok under my clothes and will make the whole process easier.
I feel nervous about starting - not about the procedure but more about my response longer term. We wont see any instant changes and can take few months to see improvements/stabilisation. There isn't a lot of data around but some studies have shown up to 50% people responding, so that's a good chance. I am unsure about how long effects last (if it works) and what top-ups might be needed. Will just need to go with the flow and see how things progress.
I am planning to keep working in between. They said it can make you more tired - particularly for 24hrs after, so I don't plan to go to work the same day as sessions. I will just have to see how I feel, but hopefully be able to function reasonably normally!
I'll update once treatment starts!
I think I understand the process a bit better now. Essentially they will take out blood, which goes through a machine (looks quite like dialysis). The blood is centrifuged (spun) to separate out the white cells (immune cells). They collect a small amount (about 4% circulating cells) and put the other blood components back in to me. A photo-activating drug is then added to the white cells and UV light is applied (this is all in the machine) - this process will damage those T cells (specific type white cell) and they will die off once back in my body. The damaged/dying cells trigger the body to eventually release specialised T regulator cells. These cells are responsible for managing the immune response - they get things under control and dampen down inflammatory processes. It is thought that people post transplant with rejection have low levels of T-regulator cells - which means the immune reactions towards the transplanted lungs can go unchecked. The theory is that by increasing these T-regulator cells you can slow down or stabilise the immune reaction against the lungs. Since it is only affecting a very specific cell, then it doesn't affect the other immune cells required to fight off infections. So I wont be more at risk of infection, which is excellent.
The process normally involves putting a wide bore cannula in one arm to remove blood, and another in the other arm to put it back in at same time. My veins are barely good enough to get blood samples at the best of times. So this is why I need the permcath. I had this put in yesterday. Essentially they make incision in neck to feed tube into jugular vein, to direct access the heart chambers. The other end is tunnelled under the skin for a few inches (this reduces risk of getting infected) and pops out again on the chest wall (few inches under clavicle) and stitched in place. There are a couple of access ports at the end - one for blood in, and one for blood out. It was put in under local anaesthetic and the procedure itself was ok, but it was much sorer than I expected afterwards! The tube is thicker than I had imagined (my previous ports being very narrow tubes in comparison) but it should settle down and in a couple of weeks be more embedded. I will have to be really careful it doesn't get pulled out, or infected - Estelle has been warned not to touch!! She is very interested in the whole thing and has asked to inspect it several times already. It's a bit cumbersome but should be ok under my clothes and will make the whole process easier.
I feel nervous about starting - not about the procedure but more about my response longer term. We wont see any instant changes and can take few months to see improvements/stabilisation. There isn't a lot of data around but some studies have shown up to 50% people responding, so that's a good chance. I am unsure about how long effects last (if it works) and what top-ups might be needed. Will just need to go with the flow and see how things progress.
I am planning to keep working in between. They said it can make you more tired - particularly for 24hrs after, so I don't plan to go to work the same day as sessions. I will just have to see how I feel, but hopefully be able to function reasonably normally!
I'll update once treatment starts!
Wednesday, April 04, 2018
Good news!!
My CF doc phoned this morning to tell me I have been funded for my ECP treatment!!!!!!! The best news I've had in a long time!! Brought a wee tear to my eye...
The funding is for 6 months initial treatment - this will establish if I am a responder e.g lung function stabilises. If I am a responder then I will probably need 'top ups' and we can apply for further funding if this is needed. If I am not a responder then at least I have been given this fantastic opportunity and wont have that awful feeling that I never had a chance at this treatment.
I don't know the details of when this will start, or exactly how often (generally its 2 x 5hr sessions every 2 weeks). It will be in Glasgow, so much easier for me than having to go to Newcastle. The ECP doctor will contact me to make the arrangements but I do need to get venous access sorted before we start treatment. I have poor veins (years of being prodded!) and they aren't good enough for the treatment, so I've to get a permacath (most commonly used in dialysis) put in before we can start. This will be a less permanent version of the portacath I had for most of my life pre-transplant, so I'm not worried about that. It might be bit annoying having tubes dangling about my person, but a small price to pay.
I really needed this wee boost, as have not been feeling great since I last blogged. It turned out I did have the parvo virus and it's taking ages to fully clear. I was unwell with flu like illness last weekend, so not sure if it was re-emergence of parvo, or another virus, but I've been really tired since. I am slowly recovering and ended up taking last week and this week off work. I realised I haven't actually had to ask the GP for a sick line since my transplant, so I must never have been off more than a week since then! I hate staying off work as feel like I am letting patients down when I cancel appointments - however I know this time I did need to just try and stop for a while and get on top of this and hopefully I will be back to better health just in time to get started on this next journey.
I will post again once I have more info about when I can get started with treatment and what it will entail. For now I am just so relieved that I am being given this chance.
The funding is for 6 months initial treatment - this will establish if I am a responder e.g lung function stabilises. If I am a responder then I will probably need 'top ups' and we can apply for further funding if this is needed. If I am not a responder then at least I have been given this fantastic opportunity and wont have that awful feeling that I never had a chance at this treatment.
I don't know the details of when this will start, or exactly how often (generally its 2 x 5hr sessions every 2 weeks). It will be in Glasgow, so much easier for me than having to go to Newcastle. The ECP doctor will contact me to make the arrangements but I do need to get venous access sorted before we start treatment. I have poor veins (years of being prodded!) and they aren't good enough for the treatment, so I've to get a permacath (most commonly used in dialysis) put in before we can start. This will be a less permanent version of the portacath I had for most of my life pre-transplant, so I'm not worried about that. It might be bit annoying having tubes dangling about my person, but a small price to pay.
I really needed this wee boost, as have not been feeling great since I last blogged. It turned out I did have the parvo virus and it's taking ages to fully clear. I was unwell with flu like illness last weekend, so not sure if it was re-emergence of parvo, or another virus, but I've been really tired since. I am slowly recovering and ended up taking last week and this week off work. I realised I haven't actually had to ask the GP for a sick line since my transplant, so I must never have been off more than a week since then! I hate staying off work as feel like I am letting patients down when I cancel appointments - however I know this time I did need to just try and stop for a while and get on top of this and hopefully I will be back to better health just in time to get started on this next journey.
I will post again once I have more info about when I can get started with treatment and what it will entail. For now I am just so relieved that I am being given this chance.
Saturday, March 10, 2018
Update to say there is no update!
4 weeks later..
We are another month down the road and I haven't had funding for ECP sorted yet. In fairness my CF doctor has been on the case since day one, but the wheels of the NHS can be rather slow. The first funding port of call was a no-go, so we have now made an application to my health board. It's a formal process with lots of form filling -the patient can add a statement and I spent an entire weekend composing this. These applications are discussed at a monthly meeting....and unfortunately we just missed this months meeting, so I don't expect any news until April. Quite a few people have asked me if I can fund this privately - the answer is that I don't know, and wont know until this process has been completed. If there is no NHS funding, then I will definitely be fighting to fund this myself. Having now spent time reading various medical studies, I am convinced this is the best chance I have to stay alive longer. Not everyone responds to ECP....but my type of rejection is the one that tends to respond.....and this could slow decline and improve survival, without putting me at risk of serious infections. It's a fairly intensive treatment but would be worth it if I was a responder.
In the meantime my ENT appointment was cancelled because of the snow!! So no further forward with that yet and not sure when it will be rescheduled for.
Estelle has had slapped cheek syndrome (parvovirus B19) - it's a common and mild childhood illness - however can be more complicated in adults, especially if immunosuppressed. We think I might have had this as well - I've not been feeling great for a couple of weeks now. I have had muscle/joint pain, mild fever and exhaustion. The fever is gone but I am so tired all the time!! I suspect the whole emotional strain is playing it's role of course. I've had some bloods taken so we can see if that's the cause. I'm glad I wasn't having radiotherapy because these are the exact risks I am trying to avoid by pursuing ECP. I can't expect Estelle to stay away from me when she is not well - it's just not possible!
I am back in Newcastle at the end of this month. I know my lung function is down a bit again (measured locally) but I was expecting that. I am trying to stay positive and keep living life as normally as possible, but it's hard when I don't know what's happening and feel very out of control. I'm hoping that I will get some news about funding within the next month though, then maybe we can move forwards either way. I will update when I know what's happening myself!
We are another month down the road and I haven't had funding for ECP sorted yet. In fairness my CF doctor has been on the case since day one, but the wheels of the NHS can be rather slow. The first funding port of call was a no-go, so we have now made an application to my health board. It's a formal process with lots of form filling -the patient can add a statement and I spent an entire weekend composing this. These applications are discussed at a monthly meeting....and unfortunately we just missed this months meeting, so I don't expect any news until April. Quite a few people have asked me if I can fund this privately - the answer is that I don't know, and wont know until this process has been completed. If there is no NHS funding, then I will definitely be fighting to fund this myself. Having now spent time reading various medical studies, I am convinced this is the best chance I have to stay alive longer. Not everyone responds to ECP....but my type of rejection is the one that tends to respond.....and this could slow decline and improve survival, without putting me at risk of serious infections. It's a fairly intensive treatment but would be worth it if I was a responder.
In the meantime my ENT appointment was cancelled because of the snow!! So no further forward with that yet and not sure when it will be rescheduled for.
Estelle has had slapped cheek syndrome (parvovirus B19) - it's a common and mild childhood illness - however can be more complicated in adults, especially if immunosuppressed. We think I might have had this as well - I've not been feeling great for a couple of weeks now. I have had muscle/joint pain, mild fever and exhaustion. The fever is gone but I am so tired all the time!! I suspect the whole emotional strain is playing it's role of course. I've had some bloods taken so we can see if that's the cause. I'm glad I wasn't having radiotherapy because these are the exact risks I am trying to avoid by pursuing ECP. I can't expect Estelle to stay away from me when she is not well - it's just not possible!
I am back in Newcastle at the end of this month. I know my lung function is down a bit again (measured locally) but I was expecting that. I am trying to stay positive and keep living life as normally as possible, but it's hard when I don't know what's happening and feel very out of control. I'm hoping that I will get some news about funding within the next month though, then maybe we can move forwards either way. I will update when I know what's happening myself!
Friday, February 09, 2018
Health Update
I was back at Newcastle this week and unfortunately my lung function has fallen again - by much the same volume (from 2.26L to 2.14L). It's not declining rapidly but, as yet, has not stabilised, and overall I have lost a litre in 6 months - so it was quite disappointing. The gastric reflux tests have all been normal, so we know that is not contributing. I had my sinus CT scan and am due back at the ENT in a few weeks. I know the scan has shown chronic sinus problems and extensive polyps. This wont have triggered the rejection, but the transplant doctor thought that getting the polyps removed would probably be a positive for my lungs. We will see what ENT think.
So we do now need to move to more aggressive treatment. Radiotherapy is the standard treatment - to effectively blast the immune cells. However this would leave me very open to infection (at least during the 6 week period) which is not ideal when you have a germ-magnet 3 year old at home! I am constantly picking things up from Estelle as it is. We also discussed a study that is ongoing at the moment, looking at a drug which is currently used for another lung disease (pulmonary fibrosis) and might be useful for chronic rejection. However its a double blinded study - which means that neither the researcher, or the patient, knows if they are getting the real medicine or the placebo. It's a 6 month trial and obviously you can come out of it at any time. However I'm not too keen on spending 6 months possibly being a placebo, while my lung function continues to fall. Even if I was on the actual drug, we don't know yet if it will be effective. I really need to try and stop further decline and maintain my lung function as high as possible. Finally we had a discussion about a treatment used elsewhere in the world (USA and many European countries). It's called ECP and doesn't have the same immunosuppressive effects, so less dangerous infection wise. The big problem being that it isn't funded in the UK for chronic rejection. It is used for some other conditions - so the technology and expertise exists, but chronic lung rejection is not on that list of approved conditions. However the consultant thought it might be worth investigating the situation in Scotland and whether I could somehow access any special funding. I have no idea if this will be possible - my CF doc is looking into this. It's a treatment that really takes at least 6 months to work and doesn't appear to be as effective in the later stages, so would need to be started soon. Hopefully I will learn more in the coming weeks. Radiotherapy of course remains a valid option if I cannot have the ECP. I will keep you all posted!
Otherwise I am doing ok. I am not feeling breathless yet, so that is fantastic. I have been very fatigued, which is a known effect of chronic rejection. It's also a known effect of being a mum to a 3 yr old and working haha! I am trying to keep a good balance but life has a habit of getting in the way. I just want to keep life as normal as possible, for as long as possible, so i'll keep on keeping on!
I was back at Newcastle this week and unfortunately my lung function has fallen again - by much the same volume (from 2.26L to 2.14L). It's not declining rapidly but, as yet, has not stabilised, and overall I have lost a litre in 6 months - so it was quite disappointing. The gastric reflux tests have all been normal, so we know that is not contributing. I had my sinus CT scan and am due back at the ENT in a few weeks. I know the scan has shown chronic sinus problems and extensive polyps. This wont have triggered the rejection, but the transplant doctor thought that getting the polyps removed would probably be a positive for my lungs. We will see what ENT think.
So we do now need to move to more aggressive treatment. Radiotherapy is the standard treatment - to effectively blast the immune cells. However this would leave me very open to infection (at least during the 6 week period) which is not ideal when you have a germ-magnet 3 year old at home! I am constantly picking things up from Estelle as it is. We also discussed a study that is ongoing at the moment, looking at a drug which is currently used for another lung disease (pulmonary fibrosis) and might be useful for chronic rejection. However its a double blinded study - which means that neither the researcher, or the patient, knows if they are getting the real medicine or the placebo. It's a 6 month trial and obviously you can come out of it at any time. However I'm not too keen on spending 6 months possibly being a placebo, while my lung function continues to fall. Even if I was on the actual drug, we don't know yet if it will be effective. I really need to try and stop further decline and maintain my lung function as high as possible. Finally we had a discussion about a treatment used elsewhere in the world (USA and many European countries). It's called ECP and doesn't have the same immunosuppressive effects, so less dangerous infection wise. The big problem being that it isn't funded in the UK for chronic rejection. It is used for some other conditions - so the technology and expertise exists, but chronic lung rejection is not on that list of approved conditions. However the consultant thought it might be worth investigating the situation in Scotland and whether I could somehow access any special funding. I have no idea if this will be possible - my CF doc is looking into this. It's a treatment that really takes at least 6 months to work and doesn't appear to be as effective in the later stages, so would need to be started soon. Hopefully I will learn more in the coming weeks. Radiotherapy of course remains a valid option if I cannot have the ECP. I will keep you all posted!
Otherwise I am doing ok. I am not feeling breathless yet, so that is fantastic. I have been very fatigued, which is a known effect of chronic rejection. It's also a known effect of being a mum to a 3 yr old and working haha! I am trying to keep a good balance but life has a habit of getting in the way. I just want to keep life as normal as possible, for as long as possible, so i'll keep on keeping on!
Sunday, December 31, 2017
2017 in Pictures
January
I went back to work after a years leave. Estelle started nursery. We spent the rest of the time inside the playhouse built in the living room..
February
I was permanently exhausted this month - being back at work (which was pretty full on) and juggling being a mummy and a doctor! Inevitably things happened like leaving the freezer door open and having to cook its entire contents.....
March
A mixed month! Both myself and Estelle had parainfluenza virus - I was off work and Estelle ended up with pneumonia! She has since taken a keen interest in listening to peoples lungs with her stethoscope! On the positive, we had a lovely trip to Manchester and Estelle has never stopped talking about her friend Marco since...;-)
April
Birthday month for me, mum and dad! Also celebrating 9 year transplant anniversary. Lots of cakes were eaten. Then we jumped off all the calories on the new trampoline (Estelle's belated 2nd birthday present!)
May
Had a lovely family holiday in the Lakes - Estelle had an absolute ball! Lots of outdoor fun. Also some lovely weather at home - picnics in the garden :-) Newcastle clinic noticed a slight drop in lung function, but I wasn't worried as it was still within range at that time.
June
Estelle loving the Bathgate galaday parade, then cheering Andrew on at the Fathers day 10K. I had my 15 year university reunion!!! Poor wee Seb had some health problems and needed blood testing - sporting his wee tractor bandage!
July
Had a lovely wee mini break in Hawick! Some great weather this month- lots of garden fun!
August
Estelles first time on a ride, with her friend Rhiannon. At Seth's baking party! Me and Andrew having a day out in Edinburgh for our 13th wedding anniversary. Another newcastle trip which showed another drop in lung function - I was pretty worried this time. I was asked to come back in a month so they could do bronchoscopy if another drop.
September
Fantastic family holiday in Majorca. Estelle is a total water baby and loved the pool and beach. This photo was taken on Frances Ann's anniversary - both wearing out butterfly dresses in memory. Was back in Newcastle at end of the month and unfortunately needed bronchoscopy due to further drop in lung function. The biopsies found chronic rejection and I started on some new medication. I was devastated with the news, but thankfully Andrew was with me, so that made it easier.
October
I was feeling quite stressed with the chronic rejection diagnosis, but tried to make some positive changes - starting pilates and also building up my weight. Victoria's friend held a fantastic comedy night in her memory. I finished off jewellery she had started making, which we sold in aid of the butterfly trust, and it was an honour to contribute in this small way.
November
Early start to Christmas festivities with a visit from the Levinsohn's! Transplant clinic indicated that although lung function still a wee bit lower it looked to be stabilising slightly. I made some changes at work to try and make sure I can stay as well as possible!!
December
We had a lovely Christmas this year - with Estelle really understanding things for the first time. She loved singing at the vigil mass - clapping along! Then she had great fun setting out her tray for Santa and the reindeer's. What she doesn't know is that after she went to bed, Seb helped himself to the pancake and drank half the glass of milk hahaha! She couldn't quite believe on Christmas morning that Santa had brought her the dolls house she wanted. It was magical to see!
Looking ahead to the year ahead, I do feel anxious about my health and what might lie ahead. However, realistically, that has always been the case - it's just that in keeping so well after transplant you almost start to become complacent and believe that you are indestructible! I am grateful to have an amazing transplant team who are monitoring me closely and making sure I stay as well as possible. This coming year will mark 10 years since my transplant and I am forever in debt to my donor for this miracle! Estelle has enriched my life beyond belief and makes me more determined than ever to stay well and to keep living life to the full. I am surrounded my family and friends who provide more support than you can imagine. I am very fortunate indeed and will go forward into 2018 with gratitude for what I have, and hope and faith for what is still to come.
I went back to work after a years leave. Estelle started nursery. We spent the rest of the time inside the playhouse built in the living room..
February
I was permanently exhausted this month - being back at work (which was pretty full on) and juggling being a mummy and a doctor! Inevitably things happened like leaving the freezer door open and having to cook its entire contents.....
March
A mixed month! Both myself and Estelle had parainfluenza virus - I was off work and Estelle ended up with pneumonia! She has since taken a keen interest in listening to peoples lungs with her stethoscope! On the positive, we had a lovely trip to Manchester and Estelle has never stopped talking about her friend Marco since...;-)
April
Birthday month for me, mum and dad! Also celebrating 9 year transplant anniversary. Lots of cakes were eaten. Then we jumped off all the calories on the new trampoline (Estelle's belated 2nd birthday present!)
May
Had a lovely family holiday in the Lakes - Estelle had an absolute ball! Lots of outdoor fun. Also some lovely weather at home - picnics in the garden :-) Newcastle clinic noticed a slight drop in lung function, but I wasn't worried as it was still within range at that time.
June
Estelle loving the Bathgate galaday parade, then cheering Andrew on at the Fathers day 10K. I had my 15 year university reunion!!! Poor wee Seb had some health problems and needed blood testing - sporting his wee tractor bandage!
July
Had a lovely wee mini break in Hawick! Some great weather this month- lots of garden fun!
August
Estelles first time on a ride, with her friend Rhiannon. At Seth's baking party! Me and Andrew having a day out in Edinburgh for our 13th wedding anniversary. Another newcastle trip which showed another drop in lung function - I was pretty worried this time. I was asked to come back in a month so they could do bronchoscopy if another drop.
September
Fantastic family holiday in Majorca. Estelle is a total water baby and loved the pool and beach. This photo was taken on Frances Ann's anniversary - both wearing out butterfly dresses in memory. Was back in Newcastle at end of the month and unfortunately needed bronchoscopy due to further drop in lung function. The biopsies found chronic rejection and I started on some new medication. I was devastated with the news, but thankfully Andrew was with me, so that made it easier.
I was feeling quite stressed with the chronic rejection diagnosis, but tried to make some positive changes - starting pilates and also building up my weight. Victoria's friend held a fantastic comedy night in her memory. I finished off jewellery she had started making, which we sold in aid of the butterfly trust, and it was an honour to contribute in this small way.
November
Early start to Christmas festivities with a visit from the Levinsohn's! Transplant clinic indicated that although lung function still a wee bit lower it looked to be stabilising slightly. I made some changes at work to try and make sure I can stay as well as possible!!
December
We had a lovely Christmas this year - with Estelle really understanding things for the first time. She loved singing at the vigil mass - clapping along! Then she had great fun setting out her tray for Santa and the reindeer's. What she doesn't know is that after she went to bed, Seb helped himself to the pancake and drank half the glass of milk hahaha! She couldn't quite believe on Christmas morning that Santa had brought her the dolls house she wanted. It was magical to see!
Looking ahead to the year ahead, I do feel anxious about my health and what might lie ahead. However, realistically, that has always been the case - it's just that in keeping so well after transplant you almost start to become complacent and believe that you are indestructible! I am grateful to have an amazing transplant team who are monitoring me closely and making sure I stay as well as possible. This coming year will mark 10 years since my transplant and I am forever in debt to my donor for this miracle! Estelle has enriched my life beyond belief and makes me more determined than ever to stay well and to keep living life to the full. I am surrounded my family and friends who provide more support than you can imagine. I am very fortunate indeed and will go forward into 2018 with gratitude for what I have, and hope and faith for what is still to come.
Tuesday, December 19, 2017
Merry Christmas!
I have ENT appointment this week about my sinuses so will see if there any further thoughts on surgery. The gastric tests so far have been fine - I've had a barium swallow and endoscopy. I still have a PH test in January (they put nasogastric tube down for 24 hr which will measure any acid reflux). I think it's looking like my previous surgery for reflux is still working, which is good news.
I have been feeling very anxious about the whole process though. I think it's the sense of something not being in my control, and that no matter how hard I try, I have little influence over the progression. Pre-transplant my CF lungs were unpredictable but my lung function varied day by day, depending on infection levels, so there was always a feeling that it might go back up at the next appointment. I am finding it hard to accept the irreversible nature of this process. However, the difficulty with CF lungs was how awful infection made me feel - at the moment my lungs are infection free and therefore I actually feel very well. So I think all I can do is make sure I am otherwise as fit as possible, so that by body copes with any drop in lung function. Within my control are the general looking after my self principles - I must remember to stick to these!
I need to look at this whole process as just another part of the journey. I don't want to spend the time between appointments getting increasingly anxious and fretting about what the next result will be. At the moment I do feel well - and I really must make the most of that. Life marches on regardless and I would hate to look back and think I spent far too long worrying! It certainly doesn't achieve anything. I have to concentrate on the fact that things might remain stable for a good while and I will deal with each hurdle at the time.
Health aside - it's only 6 sleeps until Christmas!!!!!!!!! Estelle is very excited - but I think I am still more excited haha!! She has asked Santa for a dolls house. I quite like the idea of playing with a dolls house too.... :-) I am looking forward to spending lots of time with my family over the festive period. I am forever grateful for my wonderful friends and family who support me at every turn, and I am of course, forever grateful to my donor for giving me another Christmas to celebrate!!
Hope everyone has a magical Christmas!
Wednesday, November 01, 2017
Keeping on keeping on
What is chronic rejection?
So I am a month down the line of being diagnosed with chronic rejection and I was back at transplant clinic yesterday. Overall it was a good result - my lung function was marginally lower at 2.39 L(as comparison it was 2.43 last time, 2.7 before that and 3.1 L at highest). So this much smaller drop can be within normal variation. This is good because they think it probably means it's stabilising just now - but frustrating in that it could also still indicate a very slow trickle downwards. I so wish it had just been exactly the same! However I need to be very thankful there was no drastic fall and even if it is trending down, it's very slow. I think I need to just get my head round the fact it's not going back up! The doctor said the natural pattern of chronic rejection is a dip, plateau then another dip - so at the moment I just need to be monitored more often so that any dip is caught early on. I asked more about when they would think radiotherapy would be needed and he said if drop was more than 150ml (this drop was 50ml). I also asked about how long it could plateau- he was suitably vague. I asked if maybe it could stay the same for a year - he said theoretically it could, but the biggest problem is exposure to respiratory viruses and the drastic effect this can have on the progress of chronic rejection. I know people who have been stable for years though, which is something to hold onto. I guess the bottom line is: its unpredictable and there are no clear answers. That's not so good for my logical mind - but it does also allow me to maintain more hope - if there are no clear answers then I need to write my own ;)
I know friends and family are finding it difficult to understand what chronic rejection actually is. It's hard to explain because in reality very little is known about the process and exactly why and how it occurs. The technical name is Bronchiolitis Obliterans Syndrome (BOS) which really just describes what it looks like in the lungs. The tiny bronchioles (smallest airways that attach to the little air sacs in lungs) become fibrosed and scarred - causing them to narrow to the point the little air sacs collapse. Oxygen is passed into the blood in these air sacs so you can see how this process causes a gradual loss of lung function. Unfortunately it's also apparent why the changes are not reversible - you can't undo the scarring in these airways. This means I can't get any lost lung function back - so I need to try and preserve it as best possible. I am lucky that is was so high to start with!
The reasons why the airways start scarring is poorly understood. The immune system is one of the most complicated areas of medicine and the body will still recognise the lungs are not 'self' despite the immunosuppresion. Multiple episodes of acute rejection increase risk of chronic rejection in the longer term and exposure to viruses are thought to play a role: the damage they cause in airways cause various inflammatory chemicals to be released - it might be that these chemicals can trigger the process - it also means that further exposure to respiratory viruses can speed the process up. The lungs are exposed to the environment (compared to other organ transplants) so are at risk of many different insults. The medication I am on (montelukast) targets a specific inflammatory chemical and I am already on another medication (azithromycin) which can also reduce inflammation in the lungs. I mentioned before that gastric reflux can also be associated. The thought is that acid can reflux into lungs and cause an inflammatory reaction and damage. For this reason I have various gastric tests lined up this month - barium swallow, endoscopy and PH testing (they put nasogastric tube in for 24hrs and measure acid levels). I've had all these in the past so not worried about any of them - hopefully they will give us more information.
So at the moment the current plan is to wait on the gastric tests, have lung function review in about 2 months and reassess. I have worked hard on my weight and already put 2kg on! Wee fatty me! I have started a pilates class and looking at what else I can do exercise wise (a little limited by sore CF joints!) I have had my flu vaccine - as have all my close family. I have to try and avoid respiratory viruses if possible - this is near impossible with Estelle. I came home last night and she is full of the cold with a high fever! You couldn't make it up!
However on a huge positive note, I still feel fine - my lung function is still high so I haven't really felt any different:-) So I am still working, doing everything as usual and keeping busy. I probably do need to pace it a little better and avoid getting 'run down' - it's a hard balance. Life goes on and I am not sitting back and watching it pass by! Onwards and upwards - the next lung function result will be stable.....because I have decided it shall be.
Now to start getting organised for Christmas!!!
So I am a month down the line of being diagnosed with chronic rejection and I was back at transplant clinic yesterday. Overall it was a good result - my lung function was marginally lower at 2.39 L(as comparison it was 2.43 last time, 2.7 before that and 3.1 L at highest). So this much smaller drop can be within normal variation. This is good because they think it probably means it's stabilising just now - but frustrating in that it could also still indicate a very slow trickle downwards. I so wish it had just been exactly the same! However I need to be very thankful there was no drastic fall and even if it is trending down, it's very slow. I think I need to just get my head round the fact it's not going back up! The doctor said the natural pattern of chronic rejection is a dip, plateau then another dip - so at the moment I just need to be monitored more often so that any dip is caught early on. I asked more about when they would think radiotherapy would be needed and he said if drop was more than 150ml (this drop was 50ml). I also asked about how long it could plateau- he was suitably vague. I asked if maybe it could stay the same for a year - he said theoretically it could, but the biggest problem is exposure to respiratory viruses and the drastic effect this can have on the progress of chronic rejection. I know people who have been stable for years though, which is something to hold onto. I guess the bottom line is: its unpredictable and there are no clear answers. That's not so good for my logical mind - but it does also allow me to maintain more hope - if there are no clear answers then I need to write my own ;)
I know friends and family are finding it difficult to understand what chronic rejection actually is. It's hard to explain because in reality very little is known about the process and exactly why and how it occurs. The technical name is Bronchiolitis Obliterans Syndrome (BOS) which really just describes what it looks like in the lungs. The tiny bronchioles (smallest airways that attach to the little air sacs in lungs) become fibrosed and scarred - causing them to narrow to the point the little air sacs collapse. Oxygen is passed into the blood in these air sacs so you can see how this process causes a gradual loss of lung function. Unfortunately it's also apparent why the changes are not reversible - you can't undo the scarring in these airways. This means I can't get any lost lung function back - so I need to try and preserve it as best possible. I am lucky that is was so high to start with!
The reasons why the airways start scarring is poorly understood. The immune system is one of the most complicated areas of medicine and the body will still recognise the lungs are not 'self' despite the immunosuppresion. Multiple episodes of acute rejection increase risk of chronic rejection in the longer term and exposure to viruses are thought to play a role: the damage they cause in airways cause various inflammatory chemicals to be released - it might be that these chemicals can trigger the process - it also means that further exposure to respiratory viruses can speed the process up. The lungs are exposed to the environment (compared to other organ transplants) so are at risk of many different insults. The medication I am on (montelukast) targets a specific inflammatory chemical and I am already on another medication (azithromycin) which can also reduce inflammation in the lungs. I mentioned before that gastric reflux can also be associated. The thought is that acid can reflux into lungs and cause an inflammatory reaction and damage. For this reason I have various gastric tests lined up this month - barium swallow, endoscopy and PH testing (they put nasogastric tube in for 24hrs and measure acid levels). I've had all these in the past so not worried about any of them - hopefully they will give us more information.
So at the moment the current plan is to wait on the gastric tests, have lung function review in about 2 months and reassess. I have worked hard on my weight and already put 2kg on! Wee fatty me! I have started a pilates class and looking at what else I can do exercise wise (a little limited by sore CF joints!) I have had my flu vaccine - as have all my close family. I have to try and avoid respiratory viruses if possible - this is near impossible with Estelle. I came home last night and she is full of the cold with a high fever! You couldn't make it up!
However on a huge positive note, I still feel fine - my lung function is still high so I haven't really felt any different:-) So I am still working, doing everything as usual and keeping busy. I probably do need to pace it a little better and avoid getting 'run down' - it's a hard balance. Life goes on and I am not sitting back and watching it pass by! Onwards and upwards - the next lung function result will be stable.....because I have decided it shall be.
Now to start getting organised for Christmas!!!
Friday, September 29, 2017
New Challenges
Chronic Rejection
At clinic for routine follow-up 4 months ago there had been a very small drop in lung function - made more obvious by having had an all time high the 6 month previously. I was asked to come back in 3 months, instead of 6 months, just to check. I expected it to be back to usual but instead there had been another drop of about 500ml this time, which was more significant. My lung function for the 9 years prior has been a steady straight line, never wavering, so we knew something was going on. I was given another month before review, in which time I had a CT scan of the lungs (showed nothing in particular) and went on holiday with my family. I returned for review this week and unfortunately lung function had not come back up, and was marginally lower, with me also having lost a kilo in weight. I was booked in for a bronchoscopy on wednesday and stayed overnight in hospital to get the results yesterday.
They were not the results I had hoped for. When the doctor said the biopsy had shown evidence of chronic rejection, I did burst into tears. I couldn't help it. I have dreaded hearing these words since I had my transplant 9.5 years ago. I have dreaded them even more since Estelle joined our family, nearly 2 years ago.
However, I guess I also expected it. At some time anyway - it's almost inevitable at some point after lung transplant and I am doing well to be 9.5 yrs down the line before it has reared its head.
I thought it would be better doing a blog to try and explain what this means, as its not necessarily as dire as it sounds, and it is something that is very variable between people.
Acute rejection is something that tends to happen early post transplant - a process that can be treated with high dose steroids and the decline reversed. Chronic rejection is a completely different process which causes gradual scarring in the very smallest airways and is not reversible or amenable to steroid treatment. This causes a progressive decline in lung function. At 5 yrs post transplant 50% will have this....I'm nearly 10 years so the statistics are closer to 80% (and the survival at 10 years post tx is only 50% anyway, so I'm already beating the odds). However the speed of progression varies wildly between people - it can be aggressive, very slow or waxing and waning, with periods of no decline. It tends to be more aggressive when it develops early after transplant and when it starts at a high grade - mines is late after transplant and at the lowest grade just now (e.g my lung function is still high). What needs to happen now is the process of trying to halt, or at least slow, the decline. First line treatment is usually a drug with anti inflammatory properties - I am already on this for my sinuses, so we have skipped to the next drug in line. I will be monitored very closely and the hope will be that the decline will stop or slow. I will have lung function again in 2 weeks, then 4 weeks at newcastle. If the new medication is not stopping the decline, then we will progress to radiotherapy - the aim of this is to basically nuke the immune system and try and halt my immune response.
Very little is known about what triggers chronic rejection, and what affects the progression. Some factors that might trigger this are responses to respiratory viruses (I've had two confirmed this year alone), response to infections, and acid reflux. I had surgery to stop acid reflux 9 yrs ago but this will be reviewed if lung function drops again. There is nothing I can do about the viruses but try and avoid when I can! I am still waiting on results to see if any infection in lungs (although I think unlikely). I know my sinuses are heavily infected and might have some surgery for this.
I think all I can do now is keep as well as possible, don't stress too much and eat lots of cake!! I am disappointed to be facing this, especially at at time when we are enjoying our wee family. But I will face it with all my strength. The priority here is Estelle - that she is secure, happy and surrounded by love. That is my job. This is what will drive me forward to deal with whatever lies ahead. I have two angels watching over me, and one angel Estelle making sure I don't lie about dwelling on things!
Life must go on - with as much laughter and cake as I can manage :-)
At clinic for routine follow-up 4 months ago there had been a very small drop in lung function - made more obvious by having had an all time high the 6 month previously. I was asked to come back in 3 months, instead of 6 months, just to check. I expected it to be back to usual but instead there had been another drop of about 500ml this time, which was more significant. My lung function for the 9 years prior has been a steady straight line, never wavering, so we knew something was going on. I was given another month before review, in which time I had a CT scan of the lungs (showed nothing in particular) and went on holiday with my family. I returned for review this week and unfortunately lung function had not come back up, and was marginally lower, with me also having lost a kilo in weight. I was booked in for a bronchoscopy on wednesday and stayed overnight in hospital to get the results yesterday.
They were not the results I had hoped for. When the doctor said the biopsy had shown evidence of chronic rejection, I did burst into tears. I couldn't help it. I have dreaded hearing these words since I had my transplant 9.5 years ago. I have dreaded them even more since Estelle joined our family, nearly 2 years ago.
However, I guess I also expected it. At some time anyway - it's almost inevitable at some point after lung transplant and I am doing well to be 9.5 yrs down the line before it has reared its head.
I thought it would be better doing a blog to try and explain what this means, as its not necessarily as dire as it sounds, and it is something that is very variable between people.
Acute rejection is something that tends to happen early post transplant - a process that can be treated with high dose steroids and the decline reversed. Chronic rejection is a completely different process which causes gradual scarring in the very smallest airways and is not reversible or amenable to steroid treatment. This causes a progressive decline in lung function. At 5 yrs post transplant 50% will have this....I'm nearly 10 years so the statistics are closer to 80% (and the survival at 10 years post tx is only 50% anyway, so I'm already beating the odds). However the speed of progression varies wildly between people - it can be aggressive, very slow or waxing and waning, with periods of no decline. It tends to be more aggressive when it develops early after transplant and when it starts at a high grade - mines is late after transplant and at the lowest grade just now (e.g my lung function is still high). What needs to happen now is the process of trying to halt, or at least slow, the decline. First line treatment is usually a drug with anti inflammatory properties - I am already on this for my sinuses, so we have skipped to the next drug in line. I will be monitored very closely and the hope will be that the decline will stop or slow. I will have lung function again in 2 weeks, then 4 weeks at newcastle. If the new medication is not stopping the decline, then we will progress to radiotherapy - the aim of this is to basically nuke the immune system and try and halt my immune response.
Very little is known about what triggers chronic rejection, and what affects the progression. Some factors that might trigger this are responses to respiratory viruses (I've had two confirmed this year alone), response to infections, and acid reflux. I had surgery to stop acid reflux 9 yrs ago but this will be reviewed if lung function drops again. There is nothing I can do about the viruses but try and avoid when I can! I am still waiting on results to see if any infection in lungs (although I think unlikely). I know my sinuses are heavily infected and might have some surgery for this.
I think all I can do now is keep as well as possible, don't stress too much and eat lots of cake!! I am disappointed to be facing this, especially at at time when we are enjoying our wee family. But I will face it with all my strength. The priority here is Estelle - that she is secure, happy and surrounded by love. That is my job. This is what will drive me forward to deal with whatever lies ahead. I have two angels watching over me, and one angel Estelle making sure I don't lie about dwelling on things!
Life must go on - with as much laughter and cake as I can manage :-)
Saturday, December 31, 2016
2016 in Pictures
January
We hit the ground running with parenthood. Estelle is an absolute delight - but she was also a mobile, energetic one year old and we didn't have any slow introduction to get acclimatised. I don't think either of us had ever felt so tired, and I lost about a stone in weight from just being on my feet all the time! We faced all the new challenges head on, and Estelle began to settle into her home, her family and it started to feel as if she had always been here.
February
We were delighted to attend Corey and Monika's wedding as a wee family. Estelle's first wedding and party! She coped well with the flight to London, staying at a hotel and meeting lots of new people. We were glad to have my mum, dad and Sarah with us to help!
March
Estelle started to climb, balance and get herself into all sort of precarious positions! This photo is a good representation of that month. She moved her rocking horse over so she could stand (and rock) while playing on her keyboard. This was a nightly activity - usually when we mentioned bed time....!!
April
Here is Estelle with her first pair of proper shoes! She had been cruising round furniture, standing on her own and climbing for months...but it was around this time she was properly walking. She seemed to be growing so fast! It was also my birthday - mum watched Estelle so we could go for dinner. I think we were back by 6pm and in bed by 9pm ;-) Our new rock and roll lifestyle!
May
Estelle's first trip down to Hawick for Ross' 40th Birthday this month. She was in her element playing with Andrews cousin's children. She had a ball! We also had some lovely weather in May, so a lot of time in the garden. Here she is looking for Seb - who is hiding from her in the bushes! Poor Seb didn't quite know what had happened when this whirlwind arrived.
We also had a family photo shoot courtesy of my friend Kirsty. Estelle was impeccably behaved -posing away. Seb on the other hand, managed to get into the staff kitchen, ran wild and acted like a complete diva.
June
We had a week of amazing weather, which coincided with Andrew having a weeks holiday from work. We did lots of day trips - to Luss, Briarlands farm, Blairdrummond safari park and Loch lomond shores. The photo is Estelle wading into the freezing cold loch at Luss - because she wanted to be in with the ducks. There was also much fun in the garden and we ate dinner outside every night, which Estelle thought was great fun. She had her paddling pool out and was absolutely wild in it!
July
We attended our good friends Barry and Louise's vow renewal party - Estelle was in her element! Up on the dance floor and running wild :) We had a couple of days in Hawick and also managed to attend our friends wedding, while mum looked after Estelle. That was the first and last good nights sleep of the year haha!
August
We had a family holiday to Arran, and were lucky to have amazing weather. Anne and John came with us and Estelle had a fantastic time. Here she is feeding the ducklings, which was the high light of her holiday!
September
Estelle's Christening- what a lovely day we all had. Uncle Hugh baptised her, which made it even more special. Estelle had a fantastic time at her party afterwards, and for the next month did nothing but talk about it!
Estelle also discovered one of her favourite things to do was walking Seb. Puddle suit, wellies, and puddles to jump in = one happy girl!
October
A month of lots of autumn walks, visits to the play park - for the swings and also lots of quieter days inside learning new things.
November
There is little to say about this photo, other than her mad aunty Sarah is responsible for the panda suit. Seb was very accepting of it. I think he was glad someone else was getting dressed up for once..!
December
Estelle has loved all the Christmas buzz - the tree, the lights and the parties! We had a weekend of festive fun with our lovely friends the Levinsohns and also a family day out to santas grotto at lomond shores. Estelle had an absolute ball on Christmas day, then more celebrations with Andrew's family on boxing day - followed by her birthday yesterday! She thinks that you get to open presents every day! What a lovely ending to a fantastic year. All I want for 2017 is for all my family and friends to have much happiness and joy :-) For Estelle, I want her to just be herself - the beautiful, funny, clever and kind little girl we all love.
Thursday, December 31, 2015
2015 in pictures
I never have time to update my blog any more but decided to do my annual year in pictures as it's nice to look back and it has been a very exciting year!
January
This was a difficult month as we attended my dear friend Emily’s funeral and in the weeks following we both had the 'flu virus, and I was off work for the first time since 2009...! We did snap some stunning pictures from the plane, flying back from the funeral. Emily would approve.
February
We actually started attending preparation classes for adoption - the final one being on valentines day! I didn't feel I could blog about this because it was very unknown if we would get approval with my health issues. Corey and Monika got engaged this month! I went to my first rugby game. I started mindfulness classes and tried to learn to sit quietly, with variable success.
March
Had lovely weekend with Louise, Barry and the kids. They brought me an amazing unicorn cake - just because! Had a lovely weekend in London with Andrew and went to see Matilda the musical.
April
I had a tea party and went to the Owl centre for my birthday! It was also my 7 year transplant anniversary and we celebrated my ongoing good health!!
May
We went on the holiday of a life time to San Francisco and then an Alaskan cruise. It was amazing and so many fabulous memories!
June
We stayed at Norton House where we had our wedding 11 years ago :-)
July
We had the pleasure of attending Emma and Kevin's wedding.
August
We stayed in Fintry with Louise, Barry and the kids and had a fab few days. We also celebrated our 11th wedding
anniversary. Seb had his incident with the neighbours dog this month - poor wee poppet! He has made a full recovery though! We attended what we thought was Kirsty's engagement party and it turned out to be a surprise wedding!!
September
We had a stunning holiday in Mallorca with total relaxation. We knew we had adoption panel at the end of this month so needed the rest! The panel went well and we were approved without any difficulties! It was of course Frances Ann's birthday and anniversary this month and on holiday we built a wee cairn in her memory.
October
2 weeks after our panel meeting - the day the minutes were signed - we heard about a possible match. From this day on it was a roller coaster ride!! We read paperwork, met medical advisors, foster carer, social workers and a date was set for an official matching panel in November. We hadn't shared the news with many people so I had to just go about my business as usual. We had been undergoing an intense home assessment since the prep classes in February! Andrew managed to fit in a half marathon and we had a get together with friends, as well as attending Andrew's dad graduation :-)
November
I have never been quite so busy before! We had matching panel mid November and were officially matched with our baby girl Estelle. I had a few weeks to finish up work and hand over all my patients, as well as a mad 2 week Christmas shopping spree and decorating and furnishing a nursery! I managed to fit in a wee hen night for Jennifer and a stay at Stobo castle with mum as well!! I had the Christmas presents wrapped and delivered, had finished work and had the nursery perfect before we finally met Estelle on the 25th November! What a whirlwind. We knew from the moment we met Estelle that she was meant to be with us! We had a week of introductions until the end of November.
December
Our baby girl came to live with us on 1st December and life has changed beyond belief! Yes, it's exhausting and non stop - but she is also she best Christmas present we could have ever hoped for. She is an absolute delight and full of sparkle and fun :-)
Looking to the year ahead as a 'family' is something I thought would never happen for us. However here we are on Hogmonay 2015 ready to embark on the journey of our lifetime. I wish for a year full of laughter, good health and happiness. I also think of my donor and the fact her wonderful gift has allowed us to welcome Estelle into our family. I think of Frances Ann and Claire and wish they could meet their niece - but I do know they will be watching over our little miracle.
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