This is going to be the most difficult post I have written to date. The most serious. Why am I writing it publicly for anyone to read? This blog is like a diary for me and it has helped over the years to express and clarify my feelings and thoughts. It has helped me work out problems. It enables me to keep in contact and update my family and friends in one go so I don't have to repeat myself a hundred times and I can spend time writing all the facts and figures and wording things correctly so I don't miss out details. I also hope that it may be helpful and insightful for other CF suffers or people with other illnesses or disabilities. I hope that it raises awareness for CF, organ donation and other topics that I raise. This will most likely be a long post, I warn you. I need to write this as part of my acceptance of the situation and to normalise it for myself so I can have the strength and confidence to go forward.
It was about a month ago, 2nd August, when I was admitted just before my holiday to Suffolk. I had come into the unit exhausted, breathless, had wet myself on the journey, was on a lot of oxygen and generally just very poorly. I had done a poor lung function and was very upset. One of my consultants, Dr Higton came in to speak with me and my parents. I was going to be admitted. I did a post on this on Weds 3rd Aug titled "The last few weeks", but I left out information that I wasn't at all ready to accept or talk about. While speaking with Dr Higton, she came down to my level, looked me in the eyes and very honestly and softly told me that she thinks it's time to start thinking about being assessed for a double lung transplant. In that moment I completely broke down. I have never been so upset, scared and crushed as I felt then. I screamed for my mum who rushed over to hold me and I just cried and cried. I was panicking and saying that I couldn't do it, I'm not strong enough for it. It was honestly the worst moment of my life so far; not because I was in any pain physically, but emotionally I just couldn't cope. I didn't expect to hear those words. Not from a professional, not about ME. I feel I am too young. 6 months ago my lung function was just off 60%, my weight was the best I had ever been, I had huge plans for the future: holidays, starting a family, expanding my business.... This had never even crossed my mind. After a few minutes I managed to compose myself slightly. I opened my eyes, Dr Higton was still sitting there calmly and patiently letting me go through the emotions I needed to. As a CF consultant I'm sure she has had to have this conversation many times with patients and she is wonderfully professional and kind at the same time. I couldn't have asked for more from her in that situation and I am glad now that it was her who told me.
I will never forget that moment, those few minutes. It's life changing. I am glad my parents were there with me. I needed them. Even thinking back on it now to write this it brings tears to my eyes. It was so emotional for me. More so than any other situation has been for me so far in my life.
I was admitted then and had to go to MADU as the CF Unit was full. The thought of transplant was still at the forefront of my mind. I wasn't ready to talk about it yet. That evening on the ward, the woman next to me was told she was dying. There was just a curtain between us and I could hear all the conversations. I had never witnessed a death before. Alex was with me and I prayed for her. She was an elderly lady who had her son and daughter around her. She was on a ventilator and was told she could decide when she was ready to take off the mask and allow herself to die. Imagine having to make that decision. Knowing that is your only option left in the world. She was made comfortable and wouldn't be struggling in her final moments. It was heartbreaking hearing her and her children having their final conversations; she was asking them to make sure certain things were done and taken care of when she was gone. She had her favourite cup of tea ready for her and took off her mask. It took about half an hour but she passed peacefully and comfortably. The ward was respectfully silent and we only knew of her passing when her children started crying for their mother. My dad often says that God puts things in place for us to learn from when the time is right for us. I believe this was one of those instances. With the talks of transplant, thoughts can naturally turn to death. It's something I need to come to terms with and I want to be at peace with death and not be scared of it. It's something that will happen to us all eventually. Witnessing this woman's death has definitely started to put me at ease. I know now that if that sort of situation happened to me, I could be made comfortable and not be struggling. No one wants to die in pain or suffering.
The next morning I woke up in tears; something I am not used to but I needed to cry. My dad always reminds me that it's ok to get upset. For me crying is important; I cry quite a lot! More so these days. I have to remind myself that it doesn't mean I am weak, it's just my way of dealing with things at the moment. I don't usually cry for long, but I sometimes just need to to move forward in my thinking and acceptance. My dad and aunty Linda came to visit me that day and my dad mentioned the transplant in front of Linda. I wanted to tell her, I had been thinking of telling her the whole time she was there but when he mentioned it I started crying and asked him to not talk about it. I wasn't ready yet. He later filled her in on their way out and, for then, that was what I wanted.
During the rest of that admission I avoided talking about the transplant and no one in the team really mentioned it. I was constantly thinking about it in my mind, but I could do so almost in secret and in my own time and that suited me. I could work out my thoughts. During this early period, my thoughts were that I wouldn't go for a transplant.
The end of that admission was when I went on my family holiday to Suffolk. It was very much needed and was so nice to escape hospital, CF and transplant. I'm not sure who in my family knew about the transplant talks; I still don't really know who knows! I'm hoping my parent's have told my family. Again, I have avoided actually asking them to take on this role.
During the holiday, again I thought about transplant a lot but kept it to myself. It wasn't until the last night before the end of our holiday that I had an open conversation with my mum and Alex about it. I expressed my worries and concerns that had been building up inside me: mainly my fears of death. They must have been thinking about transplant themselves too as they were prepared for my fears and had comforting answers and advice to give. They reminded me of my good friend George who is a year post transplant (tx) and how well she is doing and how much it has changed her life. They talked positively about it and I needed to hear these things. I wasn't looking forward to going home, back to reality and having to face tx talks: the next chapter of my life.
The following week, I had a check up at the hospital. My results were good and I was a lot more relaxed. When I saw Dr Higton again, she mentioned starting the assessment process for tx: requesting the different tests that need to be done and starting the paperwork. I don't know why exactly, but in my own little world, I had thought that as no one in the team had really mentioned the "transplant" word since back in early August, that it was off the table for now and everyone (except for me) had forgotten about it. I was quite happy with that thought as I just wanted to brush it under the carpet and not have to deal with it for another few years at least. Again, my reaction was to cry; when I hear the word "transplant" in relation to my own life, it triggers tears. Before I left that appointment I spoke with Shelley, another of my favourite nurses (who I am kidding, they are ALL my faves!). She was brilliant in talking me through some of my initial worries and queries. It was the first time I was asking questions about it. It felt great after to have relieved myself of some of the burden. One of the last things she said was that if I didn't go for it I'd have her to deal with! Of course this was all in jest, but it made me rethink and almost instantly I changed my mind. She was right, of course I had to go for it!
That appointment and those conversations were the next step in my acceptance of my need for a tx. I now needed to be able to talk about it openly with my close friends and family and desensitise myself to it so that I could actually talk about it without crying. I began with Alex, mum and dad. Just bringing it up every now and then. The next step was to tell my closest friends. I wanted to do it in person with them where possible. I knew eventually I'd have to write this blog post, so I wanted to try and tell them before they read it on here. Firstly I told Emily; I cried and she was there for me. Then I told Daniel; I managed to keep composure. Next I told Ashley over the phone as we were too busy to meet up in person. I cried, but less this time. I was getting better at speaking about it. I haven't managed to tell all the people I have wanted to as I haven't had the energy to see everyone. If you are one of my close friends reading this wondering if I wanted to tell you in person, chances are I did and I'm sorry I haven't had a chance to speak to you <3
Last Friday, when some of my CF team came to do a home visit, we started the assessment process. I had most of my blood tests (except the ABG, which I will explain later or another time), lung function, weight and filled out a lot of paperwork. I cried (again!) but I am improving! I am crying less and less and am able to have conversations about it. I asked a load of questions to Judith and Emy, which really helped. As you know, I like to gather information as it helps me get my head around a situation.
So it's been about a month now since tx was first mentioned to me. I am in a much better place than I was mentally and can see more clearly. I am able to talk about tx without bursting into uncontrollable tears and have put my big girl pants on now and I'm just getting on with it. It's the next step in my life and there isn't much I can do about it. The deterioration of my CF is out of my control and I have accepted that. I will not give up the fight for life and I have so much to live for. On Friday I am seeing my psychologist and it will be the first time I will speak to her about my tx situation. This will be an important step for me.
I finally want to briefly write about why I am needing a tx, why now and my hopes and fears surrounding it. There are different factors that determine whether a patient qualifies for a double lung transplant: lung function below 30%, life expectancy of 2 years or less, quality of life lessened and there may be other things but I don't want to google it too much as it will probably scare me. Dr Higton said mine was mainly due to the quality of life part.
There is a small window in which a patient can have a transplant. They need to be ill enough to need one but not too ill to survive the operation. That is one reason we are starting the assessment now. It will still take around 6 months until I might be accepted onto the list. Who knows what my health will be like in 6 months time. I may be a lot more ill, I may be the same as now or I may have improved and be too well for transplant. Best to have everything in place just in case though.
The assessment process, and even the operation, doesn't scare me too much. It's just one darn thing that is freaking me out. The ABG I referenced earlier. It stands for Arterial Blood Gas. It is a special blood test in which a needle goes into the soft, delicate part of your wrist where you can feel your pulse. It goes deeper than a normal blood test and measures accurately the amount of oxygen and carbon dioxide in your blood. It is a well known and accepted fact that this blood test hurts a lot and I am not good with pain. I have managed to avoid it all my life, but unfortunately this test is essential and unavoidable if I want to get on the tx list. I haven't asked my CF friends too much about it or googled it as, again, I don't want to freak myself out even more. I have enlisted the help of a hypnotherapist and had my first session yesterday to try and overcome my needle phobia and be a peace with this test. I NEED to conquer this. I want to live.
So that's that for now. Thank you for reading and I hope you haven't felt you have wasted too much of your time on this lengthy post! My "secret" is out and now it's time to tackle it. This is the scariest time of my life and I apologise in advance to my friends and family for having to put you through any hardships in the days, weeks, months, years to come. I love you all and appreciate your love and support in my life. I am truly lucky to have such wonderful people in my life.
Until next time, Jo xo