Well to say a lot hasn't been going on lately would be an understatement. But I am now officially one step closer to transplant and my 3 day assessment has been booked. It's been a relatively long time coming but I don't think I was really ready up until this point. My last post was called 'everything happens for a reason' and I can tell you I believe in this statement more than ever now. Things keep happening and to me they are so bad almost world ending but it turns out it really was for the best!
So rewind nearly a year ago when Nicki got her call for transplant. I was in hospital myself very very poorly with the flu. I could barely get out of bed so when she called me to say there may be lungs and she was heading to Papworth it was literally one of the worst days of my life. I don't think I could have got there even if I was allowed I was so weak but due to it being a transmittable virus of course I wasn't allowed anywhere near her or the hospital. We always had an idea in our heads of what would happen when the call came and not once did we counter in the fact I may not there with her! It was so hard being miles away and not being there to see her off to theatre or being there when she woke up. But looking back we all agree this did happen for a reason. Had I have witnessed first hand all the tubes and those first hard days post transplant it may have put me off wanting that myself or terrify me more.
But then after my last post just as I was coming around to the idea I had what I thought to be another knock back which I really struggled with. So just after my last post I was admitted to hospital to stay in for ivs and my oxygen was lower than usual and they wanted to try to get on top of it and turn it around if they could. The drug I was given gave me horrible side effects which sent my temperature up to nearly 40 degrees and my heart rate was nearly 150 beats per minute. I was shivering with a fever and it made my muscle problems the worse they had ever been I was in agony. So after no sleep and high on strong painkillers I got a phone call from a transplant co-ordinator saying something flashed up in my blood work as changing from my last set and there was an issue with my antibodies. He was questioning me on whether id had any blood transfusions or pregnancies or major surgeries. Now had I not have been through this process already with Nicki I wouldn't have yet learnt what role anti bodies play in transplant! But my mind went into absolute overdrive. Basically the amount of anti bodies you have affects potential donors for you to be a match with. The higher % they are the less likely you are to match with a % of the population. I was convinced I was done for and mine were so high i'd either be told transplant wasn't an option or i'd be very unlikely to find a match if I went on the list. I spent 6 weeks until my next appointment dreading it and thinking that was it I had no options and it turned out that wasn't the case at all. My anti bodies are 28% now which some people are 0 which is the best it can be but others can be 95% and not get on the list. The doctor is unsure why I was called as they had only changed 1%! So anyway I was quite annoyed about it all but actually again that whole experience made me realised how bloody much I wanted it when my time came. So again that whole scenario proved to me how upset I was thinking it might not be an option for me. Scary stuff!
So yes now I wait. My assessment is 3 days in January and we will see whether I can be listed and whether they feel I am now ready to go active on the waiting list. I did my lung function for the first time in 14 months last week in clinic and my lungs are now only functioning at 28% of what they should be. I hadn't done my blows in so long as I had another pneumothorax and I was so scared of popping my lung again.
I'm finding my life a bit of a waiting game at the moment. So hard to plan anything when you don't know whether you will even be well enough to go on the day but you cant not live your life either. Me and Neil found our perfect wedding venue and decided to book it because life's to short. But, its not until August 2017 as we need time to save and they had no spaces next Summer in the school holidays and we want to get married there. But its so hard because I have no idea where I will be in 18 months time. On the list and plodding on ok? Had the transplant and get to be amazingly healthy and enjoy my wedding day to the full? Still waiting and so sick I would just rather postpone until can enjoy it? Just so hard! Or god forbid the worse case scenario I was listed and ran out of time waiting. I'm feeling positive most of the time but 1 in 3 CF patients die waiting for lung transplant as there are not enough donors. So Please register to be an organ donor and save up to 9 people after you've gone. The most amazing thing anyone can give to another person is the gift of life xx
https://www.organdonation.nhs.uk/register-to-donate/
My Life, My Story, My Journey, With Cystic Fibrosis
Thursday, 10 December 2015
Friday, 11 September 2015
National Transplant Week 2015
So Monday marked the start of national transplant week. During this week I see so many social media posts and articles in local and national papers from people all telling their stories to try to raise awareness and get more people signed up. It really brings about a sense of community and seeing everyone rallying together with 1 goal - to educate. I do wonder though for those people who haven't needed to witness the transplant world first hand do they see these inspiring stories and posts? Or do I see so much because I follow people involved in this journey so it is constantly in my newsfeed? That's why we need to get people re tweeting and sharing and trying to reach the people out there who haven't needed to think about it yet. This year saw a fall in the overall numbers of donors for the first time. This shocked me to say the least as this is going backward not forward and there are more people on the waiting list waiting for that call.
So last week I had my follow up with Papworth about transplant. Things haven't been going to plan recently. It's amazing how no matter how stable you feel things can just go bam with CF and suddenly you feel worse than ever. I bought a bike a month ago and baring in mind I haven't riden a bike in 15 years and my state of health I managed 5.5 miles of Pitsford Resivoir so I was super happy about that! I had also been going to our local athletics track with Nicki and managing to jog the 100 metres slowly but managing! Nicki is in training now she's got her new lungs and if all goes to plan is hoping to join the team and compete in the transplant games in Liverpool next summer. How amazing is that! So doing all this exercise feeling pretty good then suddenly just feeling breathless. Oxygen sats lower even at rest and plummeting during exercise. So have been using my oxygen more and more rather than just overnight. Just finished a 2 week course of ivs was hoping that would sort me out but hasn't. So think I'll be having a 3rd week when see the team next week.
I say it to everyone I see and have the conversation with. Talking about it with your family is the most important thing you can do. Telling your family your wishes because if the worst was to happen the decision falls on them to agree and they can override your wishes. They are grieving, in shock and suddenly they are asked to donate your organs and if they didn't know what you wanted they may say no.
This year feels strange to me than any other before. I spend a lot of time talking about organ donation and writing about it etc. but this year is different. I'm looking at it all from a kind of different perspective. This time my sister is now on the other side of transplant. So that's such a relief and to witness first hand the greatness of the gift of life. But I'm also looking at it as now it's nearing my turn. I'm closer than ever before during the process so I see things differently to previous years.
So last week I had my follow up with Papworth about transplant. Things haven't been going to plan recently. It's amazing how no matter how stable you feel things can just go bam with CF and suddenly you feel worse than ever. I bought a bike a month ago and baring in mind I haven't riden a bike in 15 years and my state of health I managed 5.5 miles of Pitsford Resivoir so I was super happy about that! I had also been going to our local athletics track with Nicki and managing to jog the 100 metres slowly but managing! Nicki is in training now she's got her new lungs and if all goes to plan is hoping to join the team and compete in the transplant games in Liverpool next summer. How amazing is that! So doing all this exercise feeling pretty good then suddenly just feeling breathless. Oxygen sats lower even at rest and plummeting during exercise. So have been using my oxygen more and more rather than just overnight. Just finished a 2 week course of ivs was hoping that would sort me out but hasn't. So think I'll be having a 3rd week when see the team next week.
So anyway Papworth wernt sure what to make of me as things had been great up until the week before my appointment. So they want to see whether I bounce back like I have done this last year or so from whatever is going on now, before they rush and get me in for the transplant assessment. So I've got another appointment in 2 months so we will know then whether I recover or not. If I stay as I am needing oxygen more and being breathless I will more than likely be booked in for the 3 day assessment. Doesn't help with the weather getting colder because as October/November come about I won't be biking or walking to much outside as to cold. Plus I'm so extremely terrified of catching anything now since having the flu in the new year almost finished me off. I may stay indoors for the whole of winter.
Even though ive felt pretty rough this last few weeks I managed to get to the Foo Fighter concert finally and had an amazing time. They were incredible live. Even though come the evening it was bloody freezing and I had like 6 layers on. Nothing was going to spoil it. Another thing to tick of my bucket list in my head. I call it a bucket list as its a list of things I want to do in my life. Not because im planning to die anytime soon and want to get it all in quickly. Many of the things on my list I cant do with these lungs anyway. Many involve travel and super lung power so I will get them ticked off once I get a new pair of lungs (as im being positive and will definitly get my chance when my time comes :)) I also had a lovely day out at legoland with my sisters and brother and neices and nephews. That was a fun day think I enjoyed it more than they did!
Also we booked our wedding for summer 2017! Lets just say its difficult trying to plan so far ahead when you have no idea what your state of health will be. But you only live once I wont let CF take this away from me too. Ill blog about this next post.
Even though ive felt pretty rough this last few weeks I managed to get to the Foo Fighter concert finally and had an amazing time. They were incredible live. Even though come the evening it was bloody freezing and I had like 6 layers on. Nothing was going to spoil it. Another thing to tick of my bucket list in my head. I call it a bucket list as its a list of things I want to do in my life. Not because im planning to die anytime soon and want to get it all in quickly. Many of the things on my list I cant do with these lungs anyway. Many involve travel and super lung power so I will get them ticked off once I get a new pair of lungs (as im being positive and will definitly get my chance when my time comes :)) I also had a lovely day out at legoland with my sisters and brother and neices and nephews. That was a fun day think I enjoyed it more than they did!
Also we booked our wedding for summer 2017! Lets just say its difficult trying to plan so far ahead when you have no idea what your state of health will be. But you only live once I wont let CF take this away from me too. Ill blog about this next post.
Pro bikers on our new bikes!
Friday, 7 August 2015
Everything happens for a reason!
Ive been wanting to write a new post for a while. The thing is, as much as this gives me an outlet for my feelings its also hard to actually get down how I feel sometimes. There has been so much going on I just havent been able to put it into words.
As I mentioned in my last post, after the flu and another big pneumothorax I finally decided it was time to get the ball rolling on the transplant side of things. It was mentioned after my first collapse when I was very sick that I should be refered for lung transplant but it wasnt the right time for me. Having Nicki on the list was enough I didn't feel like me or my family for that matter could cope with 2 sisters on the list at the same time. Plus would we have been going for the same pair of lungs? We are the same height and genetically we will be very similar. Also I wasn't sure if transplant was something for me. As much as I want to live not die could I handle the pressure of being on the list? Every phone call setting my heart rate higher? Could I cope with the surgery itself and the pain and fear that comes from that? I wasn't sure. My anxiety was at times extremely high coping with my sister needing this big operation. In the end in many ways all I cared about was her. Wanting her to get her operation and her to live and what happened to me at that point in time just wasn't my priority. I remember lying in my hospital bed so poorly from flu and waiting for news on how her trasnplant was going. As soon as I got the text to say she was out and all was well I remember breaking down and crying and saying I dont care what happens to me now because shes ok! Thing is I know she wouls have felt the same if the situation was reversed.
So once Nicki had her transplant I decided that I needed to be less scared and take the plunge myself! She sailed through the first part very smoothly and was home in 3 weeks. She never had any complications at this point and all seemed rather extrordinary that she coped so well and managed it all without any times of extreme fear or pain.
I had my initial appointment at Papworth on April 27th. Leicester ran all the pre tests for me from there I had blood tests, ECG, echo heart scan, blood gases, CT scan, X-rays, ultrasound, bone scan, and a 6 minute walk test. I struggled in the weeks leading upto my appointment terrified of what they would say. My head was all over the place. As much as I wasn't even sure I could go through with transplant I was scared they would tell me I wasn't a candidate for transplant. Would my anti bodies be to high, is my lung to stuck to my chest wall from my blood pleurodesis or do I have some other medical problem we were unaware off which would render me unfit for transplant? This would then be game over I would have no second chance when the time came. I also prayed that they would say I wasn't quite ready for an assessment and to see them in 6 months time.
So I walked in with Neil and Nicki and had a nice talk to the doctor. I already knew a lot of the faces as ive met them through Nickis journey which is nice as it felt a bit more familiar. She explaned that my tests so far looked good. There was nothing that would stop me at this stage being allowed on the list that they could see. My lung was hardly stuck from my procedure so that was a huge relief for me I had been worrying about that since they did it 10 months before. They also said that although my lungs were clearly failing and I had little reserve, I had bounced back each time and was doing well considering. I wasn't on oxygen full time or using ventilation at night. I was also getting results from my IV anti biotics and they were still working for me to some degree. So they concluded that I wasn't desperate to get put on the list for a new pair of lungs but they would see me in Septmeber again to see how I went over the summer. And in the meantime if anything big happened or I fell quite ill in the meantime I am now a patient of theirs so I could phone them and be seen sooner. So a huge sigh of relief was breathed and we set off home.
Great I had got what I had wanted for those months I was waiting. For them to say I didn't need lungs NOW and I still had some time to get on with life and not worry about the transplant side of things for now. So thats good news right..?
...Well apparently not. That evening my reaction to everything that had happened that day suprised us all me included. I burst into tears. I cried and cried about the fact I wasn't offered an assessment as I didn't need one yet. Where did that come from that was the complete opposite of what I wanted all along?! But suddenly reality hit me. The thing I was so scared of and didn't want was actually the thing that would give me my life back. Life is tough now. I cant do the things I want to do and enjoy them. I tire so easily. I get breathless walking the dog and stop to rest many times and it hurts. The pain in my chest may be normal for me now but its agonising at times. I cant go abroard and sit on the beach or swim in the pool or see the magnificent sights of a new country because as well as not having the energy to do those things now anyway, I cant fly as my lung keep going pop and I use oxygen overnight so thats not a cheap and easy thing to arrange outside of the UK.
I dont go on nights out with friends anymore because I can barely walk in flat shoes let alone in high heels. My wardrobe is full of beautiful heeled shoes I own but can no longer wear and I long to be able to wear them. I long to be able to put on one of the many dresses I own that are sitting there on hangers gathering dust but as they are tight fitted I cannot breathe in them as it makes my chest feel so tight and heavy now. I feel completly in limbo. To sick to enjoy and live my life but to well for a chance at a new healthy life. I just have to wait for the day to come where im so sick I can go on the list. That could be next month that could be 3 years away who knows. But for now I know I am just to live my life as I am and make the best of it. Whats scary is that there are many other people out there with CF a lot worse off than me now and I have all that to come. The strength of others never ceases to amaze me. I hope I can be half as strong and half of an inspiration as they have been to me. This kind of journey isn't easy but we have to walk it, we have no other choice.
Atleast now I am clearer on things. Before I wasn't even sure I would go on and do it. But my reaction after my inital appointment has shown me that actually I am more willing to go through a hard time for a chance at a great time. So all in all the appointment at Papworth has actually opened my eyes and helped me arrange some of my thoughts and feelings. Even though it took some bad things to get me here its answered me a lot of questions and put me in a slighly better place so I guess everything does happen for a reason!
As I mentioned in my last post, after the flu and another big pneumothorax I finally decided it was time to get the ball rolling on the transplant side of things. It was mentioned after my first collapse when I was very sick that I should be refered for lung transplant but it wasnt the right time for me. Having Nicki on the list was enough I didn't feel like me or my family for that matter could cope with 2 sisters on the list at the same time. Plus would we have been going for the same pair of lungs? We are the same height and genetically we will be very similar. Also I wasn't sure if transplant was something for me. As much as I want to live not die could I handle the pressure of being on the list? Every phone call setting my heart rate higher? Could I cope with the surgery itself and the pain and fear that comes from that? I wasn't sure. My anxiety was at times extremely high coping with my sister needing this big operation. In the end in many ways all I cared about was her. Wanting her to get her operation and her to live and what happened to me at that point in time just wasn't my priority. I remember lying in my hospital bed so poorly from flu and waiting for news on how her trasnplant was going. As soon as I got the text to say she was out and all was well I remember breaking down and crying and saying I dont care what happens to me now because shes ok! Thing is I know she wouls have felt the same if the situation was reversed.
So once Nicki had her transplant I decided that I needed to be less scared and take the plunge myself! She sailed through the first part very smoothly and was home in 3 weeks. She never had any complications at this point and all seemed rather extrordinary that she coped so well and managed it all without any times of extreme fear or pain.
I had my initial appointment at Papworth on April 27th. Leicester ran all the pre tests for me from there I had blood tests, ECG, echo heart scan, blood gases, CT scan, X-rays, ultrasound, bone scan, and a 6 minute walk test. I struggled in the weeks leading upto my appointment terrified of what they would say. My head was all over the place. As much as I wasn't even sure I could go through with transplant I was scared they would tell me I wasn't a candidate for transplant. Would my anti bodies be to high, is my lung to stuck to my chest wall from my blood pleurodesis or do I have some other medical problem we were unaware off which would render me unfit for transplant? This would then be game over I would have no second chance when the time came. I also prayed that they would say I wasn't quite ready for an assessment and to see them in 6 months time.
So I walked in with Neil and Nicki and had a nice talk to the doctor. I already knew a lot of the faces as ive met them through Nickis journey which is nice as it felt a bit more familiar. She explaned that my tests so far looked good. There was nothing that would stop me at this stage being allowed on the list that they could see. My lung was hardly stuck from my procedure so that was a huge relief for me I had been worrying about that since they did it 10 months before. They also said that although my lungs were clearly failing and I had little reserve, I had bounced back each time and was doing well considering. I wasn't on oxygen full time or using ventilation at night. I was also getting results from my IV anti biotics and they were still working for me to some degree. So they concluded that I wasn't desperate to get put on the list for a new pair of lungs but they would see me in Septmeber again to see how I went over the summer. And in the meantime if anything big happened or I fell quite ill in the meantime I am now a patient of theirs so I could phone them and be seen sooner. So a huge sigh of relief was breathed and we set off home.
Great I had got what I had wanted for those months I was waiting. For them to say I didn't need lungs NOW and I still had some time to get on with life and not worry about the transplant side of things for now. So thats good news right..?
...Well apparently not. That evening my reaction to everything that had happened that day suprised us all me included. I burst into tears. I cried and cried about the fact I wasn't offered an assessment as I didn't need one yet. Where did that come from that was the complete opposite of what I wanted all along?! But suddenly reality hit me. The thing I was so scared of and didn't want was actually the thing that would give me my life back. Life is tough now. I cant do the things I want to do and enjoy them. I tire so easily. I get breathless walking the dog and stop to rest many times and it hurts. The pain in my chest may be normal for me now but its agonising at times. I cant go abroard and sit on the beach or swim in the pool or see the magnificent sights of a new country because as well as not having the energy to do those things now anyway, I cant fly as my lung keep going pop and I use oxygen overnight so thats not a cheap and easy thing to arrange outside of the UK.
I dont go on nights out with friends anymore because I can barely walk in flat shoes let alone in high heels. My wardrobe is full of beautiful heeled shoes I own but can no longer wear and I long to be able to wear them. I long to be able to put on one of the many dresses I own that are sitting there on hangers gathering dust but as they are tight fitted I cannot breathe in them as it makes my chest feel so tight and heavy now. I feel completly in limbo. To sick to enjoy and live my life but to well for a chance at a new healthy life. I just have to wait for the day to come where im so sick I can go on the list. That could be next month that could be 3 years away who knows. But for now I know I am just to live my life as I am and make the best of it. Whats scary is that there are many other people out there with CF a lot worse off than me now and I have all that to come. The strength of others never ceases to amaze me. I hope I can be half as strong and half of an inspiration as they have been to me. This kind of journey isn't easy but we have to walk it, we have no other choice.
Atleast now I am clearer on things. Before I wasn't even sure I would go on and do it. But my reaction after my inital appointment has shown me that actually I am more willing to go through a hard time for a chance at a great time. So all in all the appointment at Papworth has actually opened my eyes and helped me arrange some of my thoughts and feelings. Even though it took some bad things to get me here its answered me a lot of questions and put me in a slighly better place so I guess everything does happen for a reason!
Wednesday, 11 February 2015
The good, the bad and the ugly
So its been 7 months since my last blog and oh my so much has happened where to begin. First of all after everything that happened regarding my collapse things got much better over all. I wasn't back to where I was before but I was happy as considering how poorly I was things could have been a lot worse. I finally did my lung function and managed to blow 33% which I was happy with. It was only 39% before my collapse and I dont think I put 100% into it as I was so terrified of popping my lung doing it! I also gained 10kg in weight and was getting out and about again so was pretty pleased over all.
As the weather got colder things slacked off a little as I stopped walking Dexter so much as I really hate and struggle in the cold. Ive been having lot of muscle problems since my collapse mainly from when I was stiff in bed for so long so that often gets me down as its painful and hard to get around. But I was busying myself for Christmas and getting ready for the festive season. Christmas day was lovely there was me, Neil, Dad, Nicki (sister), my older sister and her 3 children and my brother and his son who ive never spent Chritmas day with before so that was extra special. Sat down for dinner and what happened next was a complete shock as Neil got down on one knee and propsed it was amazing. Been waiting 8 and a half years and was totally not expecting it. Made it very special!
So 3 days after being admitted my sister was due to look after Dexter for the day when she rings me in a panic to say Papworth had called with a possible set of lungs!! I was so scared and absolutley gutted because I was always going to be with her through the whole process but because I had flu I wasnt allowed anywhere near I was devestated. I wanted to hold her hand and be there when she woke up if it went ahead. A few hours later she was told it was happening and was whisked off to theatre. It was her first call and she had been waiting 19 months when she got the call. I was so upset but my amazing friends came up to hospital and one stayed late and one stayed in a chair all night next to my bed so I wasnt alone, Couldnt have got through that night if they were not with me. I didnt sleep a wink was just waiting for updates. But the operation went as well as could have done and she was being woken 5 hours after coming out of theatre, That night she was sitting up in bed eating jelly and ice cream! She's now home and really starting to get going with her new gift. I think about the donor a lot and at the gift they gave so that my sister can live. It really is the most selfless thing you can do.
As the weather got colder things slacked off a little as I stopped walking Dexter so much as I really hate and struggle in the cold. Ive been having lot of muscle problems since my collapse mainly from when I was stiff in bed for so long so that often gets me down as its painful and hard to get around. But I was busying myself for Christmas and getting ready for the festive season. Christmas day was lovely there was me, Neil, Dad, Nicki (sister), my older sister and her 3 children and my brother and his son who ive never spent Chritmas day with before so that was extra special. Sat down for dinner and what happened next was a complete shock as Neil got down on one knee and propsed it was amazing. Been waiting 8 and a half years and was totally not expecting it. Made it very special!
The next few days were busy just seeing the rest of the family for Christmas and then was thinking about celebrating our engagement but that never happened! Neil fell ill and then I did. I spent all between Christmas and new year with what I thought was a nasty cold and feeling pretty rotton. Then as soon as the CF team were back 2nd Jan I got my dad to take me straight there as I was feeling so poorly. Had temps of 40 degrees and was shivering like mad. Swab came back I had influenza A, couldnt believe it. I have my flu jab every year and never had flu but this year this strain has mutated since the jab so people are not protected. So many people and especially CF people have been really ill with flu this year. I was in hospital for 3 weeks where my SATS were so bad I was on oxygen all the time. I was really breathless and struggling to get moving again as its such hard work.
So 3 days after being admitted my sister was due to look after Dexter for the day when she rings me in a panic to say Papworth had called with a possible set of lungs!! I was so scared and absolutley gutted because I was always going to be with her through the whole process but because I had flu I wasnt allowed anywhere near I was devestated. I wanted to hold her hand and be there when she woke up if it went ahead. A few hours later she was told it was happening and was whisked off to theatre. It was her first call and she had been waiting 19 months when she got the call. I was so upset but my amazing friends came up to hospital and one stayed late and one stayed in a chair all night next to my bed so I wasnt alone, Couldnt have got through that night if they were not with me. I didnt sleep a wink was just waiting for updates. But the operation went as well as could have done and she was being woken 5 hours after coming out of theatre, That night she was sitting up in bed eating jelly and ice cream! She's now home and really starting to get going with her new gift. I think about the donor a lot and at the gift they gave so that my sister can live. It really is the most selfless thing you can do.
So after being home for 10 days and starting to feel better I started to feel breathless so drove myself down to leicester to get checked over and xray showed my lung had collapsed again. Was so gutted to have another big collapse. So had a chest drain in and luckily within a week it was up and the drain is now out. Having a cheat drain put in is one of the worst things I've been through and I've now had 3. Having it removes isn't nice either I came over all dizzy and nearly fainted. Safe to say with everything that's happened recently the panic attacks are back. So I am now being refered for a double lung transplant too. I am struggling a lot with this at the moment but I will blog about that another time when I find the words. So all in all its been a life changing christmas and start of 2015.
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