Reading the 'lung transplant patient information booklet' given to me by a co-ordinator

Well I finished my assessment Thursday and was discharged afterwards. I had 3 tests on Thursday, lung CT scan with dye, an abdominal ultra sound and an oxygen study. I didn't hear anything about the lung CT because a radiographer will have to have a look at it but the abdo ultrasound I got to see on screen. The doctor doing the ultrasound was nice and pointed everything out to me and then said "ah, you have gallstones!"
"What?! Seriously?" The student nurse that was accompanying me to my tests that afternoon jumped up out of her chair for a look. The doctor pointed out the tiny white masses on the screen and explained they were gallstones and there were a few of them. I panicked and asked "will they affect the transplant?!" I was reassured no but it was something my doctors had to be aware of and was told 80% of people with gallstones don't even know they have them. That came as a bit of a shocker, I wasn't expecting anything out of the ordinary to come back on an abdo ultrasound, it was the least of my worries! To my relief everything else looked normal.
Next I went to lung function for an oxygen study, the oxygen nurse took one look at me and said "errr yeah how far can you walk?" I told her roughly and she took a blood gas from my ear based on the results she said that was all she needed to do and I could go back to the ward... I was expecting the oxygen study to be difficult and it was far from it.
Later that afternoon, once back on the ward I saw the transplant dietician, very understanding, very nice woman. I told her what an average days food was for me and she was concerned over protein. Protein is one of the main things post transplant that patients need to rebuild muscles and gain strength and its one of the main things my diet is missing. She checked my protein stores using a small hand held device and said despite not getting much from my diet my stores were good, she took note of this and said post transplant I may have to stay on protein shakes a bit longer than their average patients because I don't get enough of it from my diet but that's no problem. She told me to watch my weight and warned if it got any lower I'd need to consider nasal gastric feeds, I've had them before and considered they maybe in my future so I wasn't surprised by this.
That evening I was discharged. Now once again I wait...

The above picture was how I started my day at 6am... I'm not a morning person and by the time breakfast came at 8am I couldn't stomach it and was whisked off for a chest and mouth xray anyway. Soon after a surgeon in blue ITU scrubs came and introduced himself. He worked for my consultant and came to explain the RHC that he'd be doing. I asked a couple of questions and consented. He explained I'd have to lie flat for a while and asked how I was with that, I don't do completely flat on my back very well so he asked me to take my NIV with me to theatre. I was nervous to the point of shaking in theatre, the staff were fantastic though and really put me at ease, they put on some cheesy music and talked me through everything they were doing. The only painful part of the procedure was the local anaesthetic being injected into my groin, I've had local more times than I can even remember and it's one of those things you grit your teeth through knowing it'll be over in a few seconds. Once that was done with the line was inserted and threaded up a large vein and into my heart. I could feel a few strange sensations in my chest and back then when it reached my heart it caused a few extra beats which I could feel. The line fed data about the pressures in my heart back to a computer and after a few minutes it was over. I had got myself worked up over nothing and if I had to go through it again it wouldn't bother me in the slightest. I had to lie flat on my back throughout and then for an hour when I got back to the ward.
Not too long afterwards the transplant physio came for a chat. She went through what her role would be post transplant how important exercise and mobility are post transplant and what I can do pre transplant to ensure I go into the operation in the best possible shape. She explained people that do exercise pre transplant recover more quickly post transplant. Exercise has a huge impact on recovery, it can make the difference of a recovery that takes a few weeks to a recovery that takes a few months. Despite my failing lungs exercise is something I enjoy doing, I can't do all that much to help myself but exercise is one of the things I can do to help myself so I make sure I do it. If I want to walk somewhere or do something for myself it may take me a while and I may have to stop and rest but I make damn sure I do it in the end. The physio was impressed by my attitude towards this and left me with a few simple exercises I can do to keep my muscles strong. Later the co-ordinator came back to see me, she went over a few last details, what tests I'd already had and what I needed and explained they'd gather the results from this week and present them to my consultant on this coming Tuesday, based on them he will either see me in clinic and explain why I can't be transplanted or pass my case to the transplant surgeons...

The gift of life

Well Monday was a busy day. My mum called the transplant unit and they still had no beds. I was pretty upset by this point and just wanted the assessment I had been promised. I had lung function at 11am so they told us to bring a bag incase a bed was free afterwards but it wasn't looking likely. They had a 16yr old girl who had had a heart transplant ready to leave the transplant (tx) ITU and she needed a side room.
So we could get there in good time we left the house pretty early, I was tired and in a bad mood. Not a good combination. I tried my best at lung function but the machines were giving a poor picture so for a few of the tests I was taken off the larger machines and put on an old style smaller machine on wheels. I then had blood taken from my ear to check my blood oxygen levels, they turned out to be very poor on my 8litres of oxygen so I was also a bit upset with that. After I'd done lung function they called the transplant unit to find out if a bed had come up and if I could go home. They said no I couldn't because one had become available but it would be in the afternoon so we had to kill time in the hospital from 11.30 until I got to the unit...
Once I got there I met some of the staff, one of the doctors clerked me in and one of the co-ordinators came for a chat. She was going through a list of things including if I got on the list how I'd get to the hospital, contact numbers and after a few minutes her bleep went off. She went to go answer it and it was a heart being offered for transplant. She then obviously had to dash off to arrange the transplant but left me with the lung transplant handbook to read through, she said "this will be your bible, most of what you need to know you'll find in here but I will come back and talk to you more". I hadn't expected for things to be so busy and intense on the unit.
The co-ordinator came back today and took me through what would happen step by step from now to life post transplant. She highlighted the sad fact that some people don't get their call in time and in light of this life must carry on as normal as possible because life sat beside the phone waiting for it to ring could be a wasted one. She also stressed that transplant shouldn't be seen as the cure, it is an extension of life. She used emphysema patients as an example she said "they could be ill but tick along for 10yrs or so. If we transplant them they may only get 5yrs but the hope is that those 5yrs would be better quality than they could ever hope for." She then spoke about donor families and post transplant contact and how they encourage recipients to write to thier donor families. She used an example of a card she passed to a family recently, a heart and lung transplant patient wrote and thanked her donor family on her 16th transplant anniversary and how over whelming it is to think a decision they made to help other people live by choosing to donate their loved one's organs 16yrs ago is still making a difference today. There is no bigger gift than the gift of life, organ donation is a miracle. We then moved on to post transplant life and she explained about the drug regime and general health and the fact that not only do you owe a good, compliant drug regime to yourself you also owe it to staff that have saved your life by giving you a second chance and also to the donor family that had to make one of the hardest decisions of their lives at one of the most difficult times of their lives. That for me puts it into perspective, a selfless family say yes to donating a loved one's organs to strangers they may never meet but wanting to save thier lives anyway, how can you not want to look after yourself and your new organs post transplant? I would feel very guilty if I didn't.
Tomorrow I have one of my biggest tests, the right heart cath, I am nervous but I think its more because I don't know what to expect than anything else.

There was no bed for me on the transplant unit. I don't know what's going to happen now, I'm going to the tests that are booked and that I can go to as an out patient which is only a couple. They tell me I'll still a priority and they hope a bed will come up over the next couple of days, I'm not holding my breath.

One down

Yesterday I completed test one of the transplant assessment. I want to say I was a little surprised by what I saw yesterday but I wasn't really. I'm not stupid, I know I'm not going into this transplant in the best of condition but still what happened yesterday took me by surprise a little. I was sat in the TDC waiting area waiting to see the dentist. Transplant requires you have good teeth, I have recently seen my own dentist but its a case of having the boxes ticked so I had to see the transplant centre's dentist also. Whilst we were sat chatting and waiting a lady in a chair and dressing gown was pushed in front of us, she said thankyou to the porter and off he went. A nurse approached her and verified who she was and that she'd come from the transplant unit. After a few minutes she looked at me and said "I hope you don't mind me asking but that oxygen you have in that bag (a back pack) do you find it heavy?" I said "yep that's what I have my carer for" whilst looking at mum! She then replied "yeh I have oxygen too but I don't use it when I'm supposed to because I find it too heavy to carry".
I sat and thought for a minute, this lady was in her early 60s, was probably in for a lung transplant assessment, yet she didn't look out of breath and could pick and choose when she used her oxygen. I tried to get my head round how different our situations actually were and just couldn't. I knew I was going into transplant in a not so great state but that was a shocker. Anyway, the maxillofacial department seemed to think I was in inpatients also and as a result my notes were on the transplant unit, a nurse came out and said "is it the cystic fibrosis (CF) unit your under or the transplant unit?" I looked puzzled "neither at the moment, I'm on the transplant unit next week". A common mistake alot of medical staff make, they presume you have a condition before you even open your mouth, because I'm young, on oxygen, quite small and going into transplant they presume I have CF. You know what they say about books and covers? Well that couldn't be a better example.
I got called in to see the dentist, he looked terrified and so was very accommodating, didn't bother to push the dentist chair back let alone do an xray, gave me basic oral hygiene info and said all was fine. Thumbs up there!
The rest of the assessment takes place next week, I'll be taking my netbook so I will be blogging probably late at night when I have allsorts flying round in my head and no I don't mean the sweets... I'm not worried about the tests themselves, apart from the RHC they're all tests I've had before, I've had so much bad news lately the assessment just has to go well...