What a rollercoaster the last few days have been. I had the pleasure of meeting my surgeon on Wednesday at transplant clinic. Great man, in the respect that he does actually save lives, with organ donation, yet he does not come across as thinking he is some god, which is a fatal mistake of some doctors in my opinion...
I sat in the waiting room wrapping my oxygen tubing round my fingers, a bag of nerves. After a while one of the co-ordinators came out with my consent forms which she asked me to sign to which I replied "what? Now?!" and I signed.
She came back out and led us through to a room with several people in it, two students that were interested in the field of transplant, the consultant anaesthetist, the surgeon, she took a seat and my parents sat beside me and the room wasn't actually that big! The appointment was over an hour long. The surgeon went over the basics of the procedure, what was important pre transplant, survival rates, post transplant complications. He stressed how important keeping physically mobile was to recovery, survival rates increase by over 50% if your able to do at least something every day, even if its just pottering round the house and next week I'm going to talk to a local physiotherapist and see if I can get access to pulmonary rehab. I got a sense of 'this is going to be no walk in the park, this is big...' and I've never felt like that before. I've focused so long to actually stay alive long enough to make the list I don't think I'd appreciated, fully, what being on the list actually meant.
Survival rates, I knew roughly but to have them directed at you face to face is a bit shocking, on average 50% of double lung transplant (bilateral) patients are alive in 5yrs, for single lungs its slightly less at 46%. Those are averages, no one can say for sure how long a transplant will actually last and they have patients celebrating their 18th, 19th and some 20th years post transplant. Only 10% don't make it through the actual operation and post op period, which when you consider how big the procedure actually is and whats involved that is a good figure. They can't say how long you'll be in hospital because no one can for see what complications there could be, 3wks is the minimum.
There is a whole host of post transplant complications which he went through but the basic things I needed to know we're weight control post transplant is very important, the medication can make you gain weight, they do not have enough data for post lung transplant but they know in heart transplant patients that if the BMI goes over 30 75% do not even make it beyond 2yrs. That, to me, is shocking, it really does make that much of a difference. And antirejection drugs. Without those he explained, you don't breathe, they are the reason you keep breathing post transplant, they come before anything else in your life, even food and drink. You must not miss a single dose, the immune system can be switched back on very quickly and if you miss doses rejection starts to take place almost straight away. I could not ever be imcompliant post transplant, I would feel too guilty on the donor family, the transplant team and my parents and family that are going to see me through this. We then discussed the pros and cons of bilateral then single lung. Basically bilaterals are harder to come by, I am small framed now, the size has to be 100% perfect or the lungs won't fit, I'm 5'4 and a size 6, my donor would have to be my size or smaller, I'm hoping that isn't as difficult as it sounds. Bilateral means the wait will be longer because of the sizing and the fact that sometimes one donor lung is good and another isn't for whatever reason, the operation will be bigger and longer, the recovery will be harder and longer but the survival rates are better. Single means the size doesn't have to be perfect so the wait is shorter, they're easier to come by, the op is shorter so it's easier to recover from but the survival rates aren't as good. On Wednesday he was undecided about which was our best option and said it was up for discussion in a meeting to be held yesterday. The surgeon said he can only advice on what he believed was best and if I came back to them and said it had to be one or the other they would be guided by me, he explained it was my lungs, my op, my call, my life. I'm not used to being able to have so much of a say in things. I talked to alot of online friends that are on the transplant list (thanks to those that listened to me waffle and ask questions!) and waited for some feedback from the meeting. The team decided bilateral was our best option, I'm young for a lung transplant patient at a smaller centre, the survival rates are better and due to the fact I don't have a 100% accurate diagnosis it's a safer option. Blood was taken and when tissue typing and antibody screening is done I will go active on the transplant list, this will take anything from 3-6wks. In the hope that it may shorten my wait for a match I have decided to sign up for the ex vivo/lung reconditioning study. I will talk a bit more about that in my next blog.
Thankyou to everyone that's supported me over the last 12mths, I couldn't have done it without you :-)

I am learning all the time, sometimes even when I don't realise it. The lessons I learn are sometimes hard to swallow, they don't always come in the easiest form but the hardest lessons I learn are the most valuable one's. A comment, or a few recently from a post transplant patient made me sit back and think for a second and if I'm honest upset me more than I even realised. They made me question if what I was doing by going down the road of transplant was actually the right one. After a chat with other post transplant patients I'm now left wondering why I let those comments get to me so much. They taught me a lesson, they taught me I love life and always will, it may not always be easy but it is worth every second. Transplant may not be the right thing for everyone, its a personal choice, my mind is made up, I want to get better, I want to live, if it that means having a transplant then so be it. I will tackle it like I do with everything else that life throws at me, to the best of my ability, I will never take one single breath for granted because I know I'm lucky, every day I wake upto is a bonus.
My transplant co-ordinator called this morning. They have a multidisciplinary meeting once a week, involving surgeons, co-ordinators and my consultant, it took place this morning and by the sounds of it my case was the topic of conversation. I called earlier in the week for an update and was told my case was being discussed today and that if the surgeons are happy I will be sent an appointment to see them. When I asked how long this would take I was told 4-6wks, I was a little bit deflated but happy to know this. So this morning after the meeting my co-ordinator called, the surgical director and head of the transplant program wants to see me on Wednesday. My co-ordinator seemed keen to state that at this point it is still an 'if' I go on the list situation as ultimately the decision lies with the surgeons. The paperwork which I'm required to sign should the surgeon agree to transplant has been sent to me in the post, this will then be sent to Transplant UK and they will contact us when I go active on the transplant list. My consultant as promised has fast tracked my case and I haven't had to wait to see the surgeons. I'm told he will spend about an hour talking with us, discussing the surgical details of the procedure, potential problems and will answer questions which I must get writing down. I am quite looking forward to meeting the surgeons, even if at this point it is a no (everything looks good, everyone is confident, I've got this far but it's still a possibility) and hearing the details of transplant, people seem believe its a case of old lungs out, new lungs in but I'm inclined to think it must be a little more complicated than that!
Any positive thoughts would be greatly appreciated :-)

Time for a catch up. The infection I talked about in my other blog got worse and I gave up and went in hospital for IVs. I pushed it and pushed it though and before I knew it a week had passed since my clinic appointment. I was so very worried about the blood results, I'm terrible for over assessing things and worrying. The thought of potentially having to go through the process of seeing kidney doctors and haematology before transplant could be reconsidered was terrifying. Even though my doctor promised he would rush it through if that was the case it would still take months, I knew that. I became very down through worrying, then on the Friday before I was due to call for the blood results on the Monday something arrived in the post. I hadn't ordered anything so I didn't know what it could be. I opened the envelope and there in 2 neat little bags were 2 bracelets, no note and no explanation. Then I realised what they were and my eyes filled with tears. A friend of mine who was awaiting a lung transplant passed away on April 6th after a long battle with cystic fibrosis. Before she died and whilst very unwell she started making bracelets to raise money for the CF trust. I ordered the bracelets March 21st and after not receiving them and then hearing the worst a few days later I presumed she hadn't had time to make them and that was ok, my donation had gone to the CF trust and was now part of her memory, I didn't expect to receive them. Suzy always spoke so warmly of the NHS and the treatment she received from her CF team, she sympathised with my struggles with doctors and my fight for life whilst I was in the hospice. I like to think the bracelets just arriving out of the blue like they did were her way of saying it WILL be ok. Later that day I went into hospital to start IV antibiotics.
On the Monday I phoned the transplant co-ordinators, my co-ordinator answered the phone and she brought up my results on the system. Both blood results came back within normal limits, no further intervention was going to be needed. That was the boost I needed having spent a difficult weekend in hospital. My case was to be discussed at their weekly meeting on Friday and things would go from there.
That week in hospital was not easy and to make thing worse, my NIPPY which I had been relying on almost 24/7 because I had an infection overheated and broke. I should have seen it coming, NIPPY ventilators are old, noisy and recently it had been stated that mine was not fit for it's job anymore, it was providing enough support. After a few hours of being off it I felt the affects my carbon dioxide starting to raise. The doctors began to worry and asked the physiotherapists to see me to try and help me clear my lungs. The consultant physio who I know well came to see me. She knows the situation and sorted me out with a hospital non-invasive ventilator (NIV), lucky for me the NIV service had been set up just a week ago, if I wasn't able to have NIV on the ward eventually I would have had to have gone to the high dependency unit. The NIV I was set up with was called VPAP (click for explanation!). It was so much better than my NIPPY and helped a great deal. My consultant contacted the regional NIV centre (which also happens to be my transplant hospital) to ask them to sort me out with a new NIV.

On VPAP with my quilt

Whilst all this was happening I received a very special gift from a company called quilts for adults USA. They had been working on my quilt for months and it arrived whilst I was in hospital I snuggled up to the quilt and imagined it as a big hug! It includes cross stitched squares of my favourite things.
A week or so later I was fit enough to travel to chest clinic and meet the NIV team, I have met the doctor before, under different circumstances which I'm not going to go into here but he had a look at my blood gases and we had a chat. I had been off the VPAP for 3 hrs and my carbon dioxide levels had already risen. He was happy to set me up with one of their VPAP machines, he adjusted the settings a little and asked me to do overnight pulse oximetery to check the settings were ok. I was so relieved, VPAP,is smaller, quieter, portable and now I have an expert NIV team on my doorstep, I couldn't be more grateful. I returned to the ward at my local hospital with the VPAP, decided seen as my IVs had stopped and I was able to use the VPAP I had been using on the ward at home I was ok to go, I ok'ed this with my consultant who was happy. I called the co-ordinators to let them know I was home and asked for an update. My consultant had spoken with the surgeons, their happy for things to go ahead, pleased with the blood results, don't see the need for a total lung capacity and they're now waiting on my consultants’ referral. Once that is written I'll go and see the surgical director and hopefully be offered a place on the list. For the moment I'm on strict rest due to a couple of lung bleeds, will update again soon.