Pics

It's times like these that make me appreciate my life and help me to realise just how special it really is.

On Monday I'm going away to spend time with my family in Wales, I'm looking forward to the break and spending time with the people I love.

News

So there's news. It was what I expected I guess, Pre Transplant clinic 22nd September. It just puzzles me where 'urgent' comes into that. I understand its holidays, everybody is away and it's a multidisciplinary meeting, involving co-ordinators, dieticians, social worker, physiotherapy, my consultant, so everyone has to be gathered together. Alot of people will say "wow 4wks to wait for an appointment is nothing". But it will be a year since I was in the hospice where I was given just days to live. I don't have the luxury of being able to wait around for 4, 5, 6wk appointments anymore. I've waited upto 8mths before for appointments and there was no way around that and I just had to wait and that was that and it looks like this is the same. I have done my fair share of waiting and I understand why you have to and I'm not an impatient about it, I just know that time isn't on my side anymore and should I get listed I could be in for a anything upto 4yrs wait for a donor so I'm conscious of that also. 4wks is the best, the earliest they can do, I accept that and I will wait, you know what they say about good things?...
I think my mum was more upset about it than I was. We had expected earlier but I had been told it would be weeks before we hear anything so I had braced myself for around the 8wk mark. I think more than anything I'm just grateful I know when it's going to be and knowing that things are happening without me having to poke the stick. Something I've always done and something I believe in the NHS that at times saves you from being just another file they brush to one side. Also the plan had been to see the surgeons after the review in clinic so I may not actually go active (provided there's no medical reason I shouldn't) until after I've seen them. If it's a yes I can go on the list that is, we don't know for sure because the results are still being collected from the assessment. And then I will have to wait for another 6wks+ to see the surgeons, to do chest measurements and final paperwork etc.
So there you have it. I could be looking at another 12 or so weeks for everything to actually be tied up and done with.

Waiting to wait...

As the title says, I spend my life waiting. Right now I'm waiting for the results of the assessment to come through which ended now well over 10 days ago. The story of my life! Then I'll have to wait to see the team in clinic for a discussion of the results and hopefully an answer.
I have a few things going on at the moment and I'm overly, stupidly tired. I haven't been able to keep up with physio not because I'm too out of breath just because I haven't got the energy. I have never felt fatigue like it but I think its just of those things that comes in the package. I am waiting (yes also) for a referral to the regional non-invasive ventilator (NIV) team to go through because the NIV I use is over 15yrs old, sounds like a helicopter and just isn't upto scratch anymore, its so old that nobody knows what to do with it or how the settings work. I have been getting the distinct morning headaches and nothing compares, I think overall my symptoms would decrease a great deal if I was getting a good nights sleep on an NIV that was doing its job affectively but I'm not... This could also be the cause of how stupidly tired I've been of late.
I've also had a case of sinusitis (we think) that's lasted weeks. It was so bad at one point I was hitting my head against the wall and clenching my teeth. I've been popping Sudafed like smarties. When I went into hospital the transplant team put me on strong antibiotics for MRSA. Rifampicin and Trimethoprim, I'd been taking Ciprofloxacin at home for a few days but it hadn't really had any affect and if it's MRSA it wouldn't have, I guess I was hoping it would be a simple infection. I've had MRSA for many years now and never been clear of it since I caught it, the sinusitis is still there a little but is alot better so I'm starting to wonder now if I have it in my sinuses. It's in my nose, throat and has been grown in my lungs before so it wouldn't be surprising if it was. I may talk to the transplant team about staying on the antibiotics a bit longer because they have definetely helped. I also have some crap going on with a previously MRSA infected finger right now as well but thats another story. So that's my life right now, in terms of how long I'm going to be waiting for the transplant assessment results I really don't know, the blood results should be back this week then I have to wait to see the team so we can have a chat and decide...

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.