It's taken me ages to post and a lot has gone on since my last blog. Despite not actually posting, I have been writing whenever I get chance. The bold parts of my blog are snippets written at the time I'mm describing. The first was a few days after my last call...
"Ever since the call I have been caught in a complete whirl wind of emotion. At first I thought I was doing ok, but as the days have gone past I'm finding it harder and harder to cope. My body itself is suffering, I've been sick a lot and had a really acidic stomach that cramps and burns my throat when I retched. I am tired and hurting. Mentally I can't even begin to describe... I keep waiting everyday thinking tomorrow I will be better, feel more on top of things again, able to keep ploughing on, but right now I'm not seeing it. Everyday my emotions feel spiralling out of control, obsessing over ridiculous things insignificant tiny things that get blown up out of all proportion, just because I am searching for SOMETHING I can get right, something that that I can control, something I can make perfect when all around is going to hell."

As you can see the last call shook me up in all the usual ways, but also in a more serious way that I didn't mention at the time. Over the last few weeks I have had problems with an issue that came up at call number 5 : Antibodies. I must start out by saying that I know very little about antibodies and they are very complicated but I will try to explain the best that I can. Antibodies are part of your immune defences, the cells in your body that fight infection, viruses etc. It is their job to protect you. After a transplant your body must have its immune system constantly suppressed to stop these antibodies from attacking the new organ which is seen as an invader which must be attacked, otherwise known as rejection. Pre-transplant the level of antibodies in a patients blood must be checked regularly as it is a factor in which organs are suitable for transplant, if my antibodies match that of a donor my body wouldn't be able to have their organs as it would immediately begin to attack it. In other words, my antibodie levels need to be as low as possible to maximise my chances of getting a donor. Which is why when my blood tests showed I had jumped up from around 20% (not a big deal) to 50% antibodies at my last call I went home pretty worried. At first I tried to put the worry to the back of my mind, I needed time to get over the initial disappointment and physical strain of the call. But all the time it was there nagging away in my thoughts all the time....

"I feel lost, utterly lost in my own head. I'm worried over certain issues but can't even figure out what to do about them. I've always tried to be a person who faces things head on; knowledge is power, protection, enabling me to focus my energies efficiently and pick my battles, protecting me from a shock at a later date and most importantly of all giving me some tiny amount of control over my life which so often feels run by others. But this time I don't know what the best decision is, maybe too much information would be bad, make me feel hopeless, the straw that breaks the camels back and makes me feel I will never win this fight. I've found this before, knowledge can sometimes be a dangerous thing, once you know there is no going back, no way to erase it from your memory, if you don't like whats been said you're stuck with it, and it can eat away at you."

In the end I couldn't just ignore it. I phoned up and spoke to my team at Harefield, they confirmed that they couldn't explain why the level had suddenly changed. Usually antibodies are created by a blood trasfusion, pregnancy or a previous transplant none of which I have ever had. The blood analyst (who had been at the hospital since it began) looked at my results and was as confused as everyone else. There seemed no logical reason to it. My co-ordinator told me she and the blood analyst would talk to my doctor, but he was away for a week so I would need to wait until then....

That week was honestly the worst I have ever encountered. I had so many questions pounding through my brain and no one seemed to have any answers for me. Why had the level gone up? Would it keep rising? What could be done about it? WAS there anything that could be done? What had effected it? Plus hundreds and hundreds more. Whenever I am scared usually I console myself that a transplant could be just around the corner, but this time I didnt even have that security, if this was some unknown problem causing the levels to rise it could take me off the list. Without the hope of a transplant there was nothing. Nothing ahead for me except a slow and painful suffering.

There wasn't a day went past that I didnt cry. Physically I was extremely ill, sick at every meal, not sleeping at night, tired beyond all comprehension. For months now I had seen my health slowly ebbing away, more in need of a transplant than I had ever been and now that chance when I most needed it was in jeopardy. I completely shut myself away, wouldn't tell family or friends what was wrong and just switched off from the world and into my own personal hell. How could this happen to me after fighting for so long? How could it end like this? I tried to prepare myself for the worst news, while consoling myself that no decision had been made yet. When the only hope you have of life is under threat it just tears your whole world apart. I thought about what I would do if they told me I couldn't have a transplant, I decided that the only way out would be an overdose of my meds. I mentally chose which ones I would take and how many I would need. It was the darkest place I've ever been to.

After a week I couldnt take anymore. I had to know what would happen. I let the hospital know how bad things were and they worked to get a decision for me now my doctor was back at work. Me and mum waited on eggshells. When they phoned I could barely speak to them, I heard the words "false positive" and we both just started crying! My co-ordinator explained that they had examined the results together and had decided that for some reason I was producing mistaken results. My level had remained the same at 20% and that the extra 28% was a false result. My place on the list was safe and no action needed to be taken.

I cannot put into words the enormous relief that poured over me when I heard those words. I felt immediately lighter, like this big weight that had been holding me down had been lifted away.I could engage with the world again and actually see things clearly and take notice again. Me and mum just hugged each other and celebrated with a m Kir Royale cocktail that my friend bought me. We had a straw each and sipped it from the bottle, very rock and roll! ;)

A wonderful friend of mine said that most people who had been through a scare like that might feel angry, or hard done by. I just feel extremely, amazingly, undescribaly lucky to have come out the other side. It has put things into clear perspective for me. There are many times when I've wondered "will I cope with a transplant?" all iit entails, the radical changes, the side effects, the possiblity of winning or losing everything that never leaves you? Now I know that I can. It is only when something threatend my chance of a transplant that I truly realised just how much I would give for that chance. I would have done anything, anything that I could do to keep myself on that list and to keep hope alive. It made me realsie that although the journey will be hard, if I am blessed enough to get a second chance at life I will seize it with all I have and find the strength to get through it. And I think even more importantly I will never forget how bad things could be and how lucky I am right this very minute.


  1. Lovely Tor,
    you have been through so much in the past weeks, months and years! you face every hurdle with huge amounts of courage and grace. I'm so sorry you have been through such an extra tough time of late, I'm so relieved it was a false result and I really hope and believe your real call is coming. I know its not always easy to talk to people but remember i'm on the other end of the phone any time, love always jen xx

  2. Hope is an amazing thing.
    Not sure if you have ever listened to it, but if not, you might like the lyrics of a song called bigger than my body, by John Mayer.
    Thinking of you Tor

  3. Wow!! I was a bit worried when you went so quiet but am sooo glad your place on the list is safe and like Jen I too believe your call is coming soon!! xx

  4. Tor you never ever fail to amaze me with your honesty and positiveness. How many of us, faced with far less, could remain as inspiring as you do I don't know! Thank you for posting all of your thoughts, you may never realise just how many people read your blog and how very much it plants the feet of those who stress about stuff firmly back on the ground.

    Sending you much love always and praying hard for new beginnings to be just around the corner. x x x

  5. When I read this post I was so relieved to hear that your worries were resolved and that your place on the list is safe.You deserve to get that call soon so much and I am praying it comes soon.I have had pleasure of a stay at Harefields for a bronch and am hoping for positive results from my biopsy showing no rejection on Monday.
    We don't what the future holds for us but please you must stay around to find out!

  6. Wow babe what a rollercoaster ride n yes you held on tight. Good for you to enquire about it all...I'm so relieved for you that you're still on that list. The uncertainty is what I found thd hardest thing, never knowing what's next. I found planning for my post tx life really helped me because I felt that either way I was keeping my mind off the pain and anguish during the day. It would be night time that got me but I established a little routine of music, reading and writing my journal. I hope you're still able to complete your OU course and hope your tutor has been understanding. Well done for finding strength and courage to share the hard times with us all its not easy i know-hoping your call comes real soon hunny xxxxx

  7. God bless you Tor and praying #6 is the right match for you and comes very soon.
    A wonderfully expressed post and glad you came through the darkness so much stronger and even more courageous if that is possible!

  8. I've had a weekend of watching Phantom Of The Opera (numerous times! lol), and it made me think of you so I thought I'd pop in and say hi :) Dawn xx

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