Now it is all about recovery after such an ordeal, and I can tell you it was horrific. I think when I wrote most of this blog, even when i was going through it, I just described the symptoms and what was happening. I got on with it because I had to, there was no alternative. Even now I think I put on a brave face and only certain people really got or get glimpses of how I really felt/feel. On reflection it was horrific but I am hoping i'm on the road to recovery properly this time.
The good thing is that I am on less medication now:
* mycophenolate (immunosuppressants) which I should be one for another 6 months
* azithromycin (antibiotic. This is instead of penicillin. I will be on this for life)
* Aciclovir (anti viral)
I've had a few issues including an eye infection which meant I had terrible weeping eyes and blurred vision and now I have pain in my joints (mostly ankles, feet and knuckles). It is common to have these odd ailments as my body has been through so much so i'm hoping they get better.
I am trying to get my strength back and over the past month have really started to improve with my strength and ability to do more. My biggest battle is my mind! I find it a struggle sometimes to come to terms which what I have been through. I have an internal fight with myself that I should be so happy, grateful and positive because I have been given another chance at life. Yet on the other hand I feel so lost, like I should be doing something more profound and not to waste this new life. I have the fear every single day that it could all come crashing down.
I feel the perception is that I've had the transplant, it has worked so all is or will be ok. That I not necessarily the case though. I am in the most fragile stage of the transplant now, allowing it and protecting it enough to develop and mature. This will take at least a year or two. Not only can I catch things to make me ill now or that might affect my marrow in the short term but also in the long term there are other things that can happen. Like the joint pains, like the fact I have iron overload because of all the transfusions I've had so I'll need to actually have some blood taken off me every so often to control it (how ironic is that). It is just a never ending cycle of ups and downs.
I have to be so careful as I effectively have the immune system of a 3 month old, yet mine is complicated! Something like the flu could see me back in hospital. I have no immunity anymore to all the childhood illnesses I once had, so try and avoid children, Chicken pox would be very bad! I don't have the immunity to the illnesses we all had inoculations for growing up, measles, mumps, rubella, polio etc...
The problem is I can't wrap myself in cotton wool. I can't live like a hermit even though I'd like to because I am so unbelievably scared of catching something. I've learned to wash my hands to within an inch of their lives! It is the main way germs are spread and when someone seemingly has a cold, I never know what virus it is. Virus's are bad for me, very bad. I seriously feel like I want to spray everyone I meet with antibacterial gel! Sounds funny but my life kind of depends on it.
That said I am looking to return to work in January, the docs seem to think that would be ok, all being well. I am looking forward to it as I've been off for so long but it is very daunting.
I am constantly battling the cmv virus, which seems to be my nemesis. CMV virus is something that can be very bad news for a newly transplanted person. It can also lead to life long medical problems such as severe lung problems, breathing difficulties, eye problems etc... Therefore it is important that the level of it in my blood is checked regularly. I've only just come off the medication for that which affects my blood cells in a bad way. That coupled with a cold type virus I seem to have means my white cells and platelets have dropped a lot in 2 weeks. I am now Neutropenic again and back on the gcsf injections to try and boost them. They seem to be coming up (as of today) but we will see. i cant allow myself to get too hopeful anymore because I can't take the heartache if it is not good news.
At the moment I suppose I am taking each day as it comes. Some days are really good, I feel happy and I am grateful, relieved and positive about what I have come through. I even feel able to plan things for the future. Other days I feel lost, despair, like I don't know what I want, I don't know how long i'll be here, so very uncertain and I just cry, all day or for many days. Today is one of the latter days. When I was in hospital all I wanted was my normal life back. Now I am nearer to actually having it, it all seems almost not enough or something, or more like I should be doing something more. I don't know and I certainly don't mean I want to change it all but it messes with my head. I do know that I need to take this time out now to recover and relax, which is easier said than done.
What I try and do daily is cherish the wonderful people in my life, the man I love, my family and my friends, they are all people I always want in my life.
The thing I have learned though is that I wont ever be my normal self again, I have changed and it is the new me I am trying to figure out. it is all very hard to put into words but I hope it makes some kind of sense.
I'll finish this post with a pic of me as I am now...
In May I started the conditioning treatment for transplant number 2 which involved another week long course of Chemotherapy and ALG. It wasn't as bad the second time but maybe I was more used to feeling so ill. Thankfully I didn't lose my hair again.
This is the chemo...
Its weird seeing it go into your body knowing you'll feel very ill very soon!
Having said it wasn't so bad , it certainly was not pleasant. I had sickness, lots of temperatures where I got bugs as I couldn't fight off anything myself, diarrhoea, stomach cramps, serum sickness (painful joints, tremors, fevers).
I then had the new cells given on 7th June 2012. Then it was another waiting game for a few weeks to see if they'd taken and to keep me as healthy as possible in the meantime.
I blew up like a balloon again with water retention and because my kidneys were suffering and not working properly. I reached the point where I could hardly move or touch my skin as it hurt so much and was laid flat in bed most of the time. I needed the nurses to bathe me and help me change, I struggled to get to the toilet so a commode was right next to my bed. I cried every time I moved with the immense pain I was in. They had to put a syringe driver in my stomach which administered 24hr pain relief, I was on many painkillers including morphine.
I developed an allergy to penicillin too, which I had always been fine on before. Wen I got a temperature, which was quite often, they had to give me immediate antibiotics and do blood culture to see what bug I had. The first drug they would give, as a matter of course, through my Hickman line was meropenem, then they would move not stronger antibiotics. A lot of these are penicillin based drugs and I erupted in an awful sore, itchy, bright red and lumpy rash so had to use steriod creams daily all over.
I still have skin discolouration on my legs from it. I had to have a few skin biopsies to check what exactly the rash was and then they decided it was the penicillin. So I need to remember that for life now.
I was on many medications. The general ones I remained on were cyclosporin and mycophenolate which are immunosuppressants to suppress the immune system and stop my cells attacking the new cells. The cyclosporin was bad for my liver and I kept having abnormal liver test results and hence they'd send me for liver ultrasounds. Thankfully my liver was always looking normal but they took me off the cyclosporin and kept me on the mycophenolate instead. I was also on omeprozole (for the stomach due to the stress it was under with the meds), folic acid (for cells), Azithromicin (antibiotic I will be on for life) and aciclovir (anti viral).
My mood was so very low and it was at this time I thought it would have been easier to die. What was the point in doing all this and putting myself through all this pain when it was all so uncertain. I was causing pain to those who cared for me and couldn't see the light at the end of the tunnel. I used to get worried and stressed about the future and who would look after my cat, what my family and friends were going through, what would happen with my job if I was off a long time, how would I pay my bills, how I could give my possessions to friends, etc... My lowest point was when I stopped thinking like that, about the future, and all I thought was I don't care. I thought it doesn't matter what happens if I die because I wont be here. That sounds so terribly selfish doesn't it.
It was then that I started seeing the specialist transplant counsellor. I was diagnosed as suffering from depression and i was offered anti depressant tablets. I didn't want them so I saw my counsellor every few days for a talk, he was brilliant and slowly i felt better and saw a little more hope.
My bloods started to improve slowly and I had regular GCSF injections to boost the white cells I had. I started getting daily visits from the occupational therapist and physio to try and get me prepared for being out of hospital. By this time I had spent over 7 months in hospital with only a few days out. It meant I was very weak, could not stand up for long or walk more than a few steps. I was unable to stand in the shower or even stand long enough at the sink to brush my teeth. They helped me to regain my confidence and strength with exercises, helping me get ready each morning and taking me for small walks up the corridor. I remember crying when I was finally able to wash my hair on my own, it was such an achievement for me at the time.
This is me just before discharge..looking a bit better...
After 6 weeks I was discharged. I slowly didn't need any more platelet transfusions and then a bit later stopped needing blood transfusions. My bone marrow biopsies were good and my day 100 post transplant biopsy showed I had good producing cells and they are 100% donor.
I visit kings hospital every other week and Northampton in between for blood tests. I have got a lot of my strength back but have to take each day as it comes as no one day is the same as the last.
I am now on day 137 post transplant and all I can say is that it is hard, so hard. I am doing ok but its certainly not all plain sailing....
So it has been a while and I must apologise for that. Life seems to have taken over and I have neglected my blog. The plus side is that I'm still here to write this and have a life, of sorts, but at times I wasn't sure I would be. However it has been a very long and difficult journey which I have not yet finished. I'm going to do a few updates to cover the time since my last blog in March.
I last wrote when my bone marrow transplant was not doing so well after getting the CMV virus and being treated with very toxic damaging medication (Valganciclovir). Well unfortunately that transplant failed. My blood levels never recovered. I was left with no immune system or working marrow at all so I spent a long time in hospital while they kept me alive with medications, blood and platelet transfusions.
I think this might have been my darkest time. I had spent most of the past 6 months in an isolation room in hospital, aside for the odd day when I'd be allowed home for a bit. I was so unwell that it only took a day or two before I got an infection and had to rush back to hospital in Northampton and get taken by ambulance down to London. I remember one particular point when I really thought it was the end. I was in Northampton Hospital with severe Graft vs Host Disease in my skin, liver and gut. I spent most my time in the bathroom as I was constantly vomiting, had chronic diarrhea, was on oxygen as I couldn't breath properly and had a raging temperature. I remember my brother visiting me as he had to fly back to Australia that night and I broke down saying I couldn't do it anymore. I seriously thought that was the last time I would see him. I was sent by ambulance to London that night. These were the roughest few months. My marrow was not working, I was very ill and just didn't know what was going to happen.
In April it was decided that I would have a second transplant. The whole process had to start again. The transplant team rechecked the bone marrow register (Anthony Nolan Trust) and approached the best matches. I believe I had three matches, the first I'd already had, then they approached another who lived in America and they declined to go through the process so they re-approached my original donor in Germany.
Being the obviously amazing man that he is, my German donor agreed to donate again. The first donation of marrow he did was just sitting in a chair having blood removed and sorted in a special machine then back in without the bit that was to be used for me. The second time he donated they opted for the more traditional way of donating marrow cells and that is to have the marrow liquid sucked out of the bone. I have bone marrow biopsies regularly which involved putting a needle in my back/hip bone and removing the liquid from the marrow in the middle of the bone, then taking a piece of the bone for testing. It shows how many cells you have etc, much more than a blood test. My donor had a similar procedure in his back where they took a much larger amount of these cells from the marrow liquid and that is what was flown over to me in London and given as my transplant.
They tried to allow me some time at home before starting the whole process again but every time I was discharged I got an infection again. I ended up having three Hickman lines before my second transplant as they kept getting infected. This is not a nice experience, having a plastic tube forced into your chest. In fact I absolutely hated it and each time felt like a lump of meat on the operating table. The surgeons were so rough, there was so much blood and I just felt violated...that's the only way I can describe it. Having said that, it was a necessity. My veins were no good by this point and couldn't be used and i had a line put in my neck temporarily.
So...then came Transplant number 2!...
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