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Tremendous highs and horrible lows.

Posted Mar 04 2013 7:29pm
I cannot believe it has been months since I posted, I'm so sorry for the delay. There's been lots going on in life some great things and others not so good. Its also been very busy so will try and cram all the news into one long post! I've been struggling to get things down and with some problems (as you will read so please forgive me skimming bits and being a rather long post).

So I'm going to try and go in some kind of date order. A few months ago now I lost a very dear transplant friend. They had had their transplant but unfortunately out of such joy came an incredibly cruel twist of fate which caused their death. There are no words to describe how strong, graceful, modest, caring, dignified and beautiful they were. I won't identify them as they were very private, safe to say I was devastated by the loss. It was my first funeral and I sobbed all the way through. Im glad they had some happy months in which some of their dreams came true. I will never forget their courage and am honoured to have been part of their life. Love you my beautiful friend.

In happier news, we have a new addition to the family. As many of you will remember my dog Scruffy died last year while I was at my worst healthwise and I was completely devastated. I could never imagine another dog in our lives. But as time went on although the loss was hard, I felt like we needed that happiness a dog can bring. We weren't sure what to do but then fate lent a hand. A friends dog had puppies, but they were all sold.  The last pups sale fell through and my friends were going away so I offered to look after him for the week; and as soon as my little jackawa (chihuahua, jack russell cross) stepped over our door I was lost!
After a lot of soul searching we kept him and named him Lucky. He will never replace Scruff no one ever will but with every day I love him more and he develops new qualities that make us laugh.

My uni work is progressing well although its been really tough lately. Ive finished another module. And plan to graduate this year ( Also started two other courses (you see why I haven't blogged?). Hard work but hopefully worth it!

Next good news which is really my main news is that I COMPLETED THE HALF MARATHON!!!!! yeah baby! As I said in my last post I was really tired and undergoing tests (more of that later) so never actually got further than 5 miles. I was really worried I wouldn't get round as I knew how disappointed I would be. I worried I had set myself up for a fall. However, in the days leading up to the walk I got strangely calm, a bit like when I was in hospital after transplant. A strong sense of it being ok and even stronger determination. Everyone was saying how it didn't matter how far i got but i quietly thought I would do it. On the day dressed as supergirl, I headed to the race. I had carb loaded the night before and felt really upbeat and excited. And off I went! I walked the whole way but after the first mile I thought I can't do this, I persevered and it got easier. I kept going and was lovely to have people cheering me on, made such a difference. I was the slowest but I was till going and that was all I wanted. I got to mile 11 and hit the way I cried, and wanted to sit down this was the only point on the course that i really struggled. I was in such a state but determined to finish! I had to go behind a tree to take of my tights and supergirl pants (over tights I didn't go commando) as my feet were rubbing on them. My mother took great delight in announcing this and twirling said knicker around at the end! My sister, her fiance, my nephew (who made an amazing banner) my aunt, uncle nan and godfather and of course my mum and dad came to cheer me on and kept me going. A friends daughter was also running so she appeared a long the way too! As I saw the 12 mile mark two friends Pops and Paul were screaming encouragement! They put their arms around me and talked me all the way through the last and hardest mile. I was last to finish (although others had cheated or left) and as I walked down the last stretch the organisers were clapping, a lovely guy had ridden a bike ahead and got them to cheer. My friends and family all crossed the line with me shouting encouragement and we all got a bit teary. I was so exahusted by then but so incredibly happy (I'm crying writing this!) it was a dream that I believed to be fantasy that I accomplished by myself. I was proud, emotional and a mess! I thanked my donor for this incredible gift they had given and to those who weren't able to stand beside me. It is one of my biggest achievements esppecially considering I was dying last year, I completed 13.1 miles in 4hours 30 mins. My donation page will close soon and thanks to your generosity I have raised nearly £5000. Amazing. On the way home I said never again but by the evening I was stating that next time I would run it. As I crossed the line I was asked to film a piece for ITV london which you can see below.

I'll skim over a few months. As I think I mentioned I have beeb suffering a lot with fatigue and other health problems. Basically I have contracted a virus called Epstein Barr which has been up and down over the last 6 months. To start with I tested positive for it and was told to be on the safe side I would need a CT scan to check for any lymphoma's as they are related to this virus. They found that a gland in my chest called the thymus was enlarged and therefore required a biopsy. The biopsy was done with a cut but when they got in they found my scar tissue was so thick they could not reach where they needed to. So I underwent an op that was supposed to take 30mins and instead lasted nearly 2 hours for no results. Then I had to have biopsy number 2 which was done while awake with a long need being passed throught the chest, a horrible experience. The problem is that gland being biopsied is on top of two main arteries and heart so literally a moving target. Its possible they can miss and cause a major bleed, which would mean reopening chest. I endured this but once again a positive sample could not be gained so I needed a 3rd needle biopsy.
 I went in for my 3rd biopsy which unfortunately collapsed my lung and was much  more painful, it was testament to my incredible dr that he kept me smiling throughout. I also had a lovely nurse who held my hand throughout which made a huge difference, both said it was testament to me that I was able to follow breathing instructions and remain calm as this was such a risky procedure with risks of internal bleeds. I had to have a drain put in (both drain and biopsy done without sedation) and stay for a few days but thankfully the biopsy was successful and results were Clear of cancer. Dont know why the gland is enlarged and will need to be monitored but its not cancer. During the C scan they saw an area of shadow on other lung so I was given oral antibiotics to clear it up and went home. After 8 days on antis I woke with a bad pain on that side and the feeling of needing to shift stuff but unable to do so. It was like something was blocking my airway my lung function dropped 30%.. I phoned Harefield who had no beds and sent me to A&E. It was the worst 7 hours waiting in a room full of vomiting virus, and other awful coughs and colds I was worried sick. The drs had no idea how to treat a transplant patient so the next day I headed to Harefield without an appointment. An xray showed the shadow had spread over whole lung and pleurisy was supected but rejected. I needed a bronch the next day and another CT scan which showed my other lung had collapsed. When they went down with the camera they said the lung was blocked with such thick sputum they took 45 mins work to hoover it out. They said I would never have shifted it myself and would have detriorated quickly if I hadn't come in. I was put on ivs and monitored closely. Everyone was so kind and looked after me so well. I had a long line in which I struggled with but actually was easier than I thought. I was let home a week before xmas on home ivs. It was extremely hard fo me not  to have the lovely chrismassy build up I was hoping for after 6 years of putting Xmas dreams on hold.

Since then my lung function has improved but unfortunately the fatigue has persisted to the point where it has been unbearable the last two weeks. My level of EBV virus was dropping but has suddenly shot back up. I have had loads of tests to rule other things out so while not 100% conclusive we seem to think the EBV is the problem. It's been unbelievably hard mentally to return to a life pre transplant literally being too ill to get out of bed and feeling so dizzy, weak, and absolutely exhausted. Every time I hoped I was starting to improve but come back down with a crash. Every time I do anything slightly strenuous a couple of days after my body just crashes out and I'm SO exhausted, shakey, muzzy headed, dizzy and ache all over. not an awful lot to treat it. The most devastating thing is that there is not a lot of treatment for it and I am unlikely to ever get rid of it fully or feel 100% better. Only treatment is reducing my immunosuppression which is risky as it can lead to rejection so is a delicate buisness.This means that I have all the symptoms of a virus such as exhaustion, weakness, difficulty concentrating, aches, etc but whereas a normal person can fight it off I can't because my immune system is suppressed after transplant. I can't get out much, am again wary of being out on  my own while feeling so awful and this is severely effecting my concentration and memory which is having a detrimental effect on my uni work. don't mean to be nasty but being told it will "wear off" or to "be positive" really isn't helpful. I consider myself a positive person but most people have enough of feeling ill with a virus after a few days, imagine how it feels having it all the time. Not so easy to brush off. It's unlikely I will ever get rid of it completely and its very hard to cope with feeling so rotten especially when youve gone through so much to feel better. The statistics after transplant are that 50% of people die before 5 years, hence why I'm keen to enjoy my life while I can and hate being forced to rest in bed or be housebound, possibly even using my wheelchair occassionally.
At the moment we are reducing my immuno's a bit and keeping a careful eye on my Lung function etc to check for signs of rejection. I have a lot of dreams and ambitions and at the moment they are all fading away while I lie in bed wondering if I did the right thing having my transplant if this is life after. I will always be grateful for my second chance and the things ive seen and done but just wish that things could work out differently. Anyway I am not giving up completely just struggling a lot
to cope with the last few months, Rest assured I  intend to do all I can to get the best treatment possible and continue the good fight.
Thats my update and even if I just write a short paragraph I will try to keep up with my blog more regularly. I missed it and hope you missed me a bit too.

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