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!
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