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Just a quick note. Even though I have been prioritized on the list for a right heart catheter (RHC) as urgent the list is long. They carry out two cardiac catheters/angiograms a week and there's 8 people ahead of me on the urgent list. I've been given an admission to date to the transplant unit for August 2nd and will be there for 4-5 days depending on how things go. The RHC will be carried out on August 5th and I've been receiving appointment letters for that week from other departments for other investigations. In true 'Rachael's Luck' style I received an appointment for oral clinic for July 30th... Yeah that would be the week before I'm admitted, god damn.
Today out of anxiety more than anything I called one of the co-ordinators. I didn't want them to think I was pestering, my appointment was only on Monday but the amount of concern my consultant showed at the appointment has been playing on my mind. Well not really the concern but the sense of urgency and the 'oh dear although this is what I've been fighting for it is really happening now and I don't know what to do about it' feeling. Just a feeling that I want to help myself as much as I possibly can and if that means being a pest then so be it. The co-ordinator was extremely understanding and put my mind at rest. They had received a fax from my consultant and he has ordered an urgent cardiac catheter, he mentioned this would probably be needed. Now we wait for Cardiology to free up a slot when they do I go onto the transplant unit and complete the rest of the tests. As the cardiac catheter has been marked as urgent and the request has already been sent it shouldn't be more than a week. Things are moving forward, that, to me, is rather novel and something I'm not that used to.
Anyway although the co-ordinator had received the fax by the sounds of it, it was a brief one because she didn't know anything about me and began asking questions, most of which I struggled to answer. This led me to think back to some of the turning points I remember about my lung disease. Some of the main things that stick in your mind as sort of flash backs. Really not major events in reflection but just situations that never leave you.
She asked what my diagnosis was and I said I didn't have one, I didn't compare what I had to another more common lung disease which I and people around me have fallen into the habbit of doing. But then I thought how must that have sounded? I'm 21 in end stage respiratory failure due to some random lung disease I developed age 14 that I've had tests for for the last 6yrs and some of the top respiratory teams in the UK cannot even fully explain the disease or what it is, why I developed it and why its suddenly picked up pace and become hell bent at taking my life. For the first time in along time I allowed myself to relate to what my doctors or the doctors facing me must feel, Frustrated. Frustration has never really come to the front of my mind like it did today. Its always been there but never really a major feeling most of the time I've had to much other stuff going on to actually take some time out and try and assess what I'm actually feeling or even care about what they, my doctors might actually be feeling. I've always thought when it comes to my doctors 'how dare they feel frustrated when from what I'm feeling frustration would be an improvement'. And for some reason that just hit me today, that what I've learned might not actually be right, that contrary to what I might actually believe my medical teams aren't the enemy...
So you'll probably recognise the new url and the altogether new blog! Since me and Jamie split and as my situation with transplant becomes more tricky (and the blog was becoming about just me) I thought about starting a new blog. I have so many followers on facebook (34 comments on a status last night!) and so many on here that its just not going to be possible to keep everyone in the loop with goings on so rather than starting a new one I thought I'd use this one.
So those of you that are managing to keep up, here goes.
Yesterday I had an appointment to see the transplant consultant. Last time I saw him I didn't fit criteria and he refused to put me forward for an assessment. This time round problems had been ironed out on both sides, there was no reason why I shouldn't be put forward for an assessment, we all agreed on this, the consultant was pleased I was a good candidate and has passed my case to the transplant co-ordinators and surgeons. I will need to be admitted to the transplant unit for a few days whilst the team check my other organs, mainly liver and kidneys because the post transplant drugs are most harmful to those organs. And run a few other tests to bring things upto date then they will all sit down at a meeting and decide whether or not to offer me a place on their list. I'm not at this point on an active transplant list. The consultant has given the go ahead for the assessment to take place, it looks extremely positive but nothing is certain yet. My london team have been in contact and are 'delighted' with the fact the consultant was happy to put me forward for the assessment. I am now just waiting for the co-ordinators to call me onto the transplant unit to complete the final tests as I said that will be within the next 2 weeks.
On the subject of my London team, a recent summary has revealed they understand what is happening with my disease, what is going on but not really why and I don't have an official diagnosis. I have a lung disease so rare it doesn't even have a name. It is similar to several conditions but doesn't fit into one label. As the blog title says, anything but ordinary!
The assessment will hopefully take place soon, I will be taking a laptop into hospital with me so I'll keep this blog upto date daily.