Threatened

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.

Number 5

I started writing this post a few days ago; apologising for taking so long to write, telling you how busy I'd been with uni and various other things. Then along came transplant call number 5 and that all went out of the window.

As usual, I had woken up at 4am when my overnight feed finished and went through the usual routine of turning the pump off, putting medicine down the tube, flushing it and then pulling the tube out. I was just settling back to sleep when I heard something, it took me a few seconds to realise that my mobile was ringing. I must have been so drowsy I couldn't think clearly because I picked it up and looked at the display as it rung off, there was a mobile number displayed on the screen. "Who the hell is that?" I thought "it can't be Harefield, they've never phoned at this time before!! Must be somebody trying to sell me something". Yes, I am completely stupid. I then thought "maybe it is Harefield" and after staring at my mobile for an instant turned to look at the house phone thinking that would be their next port of call. I jumped as my mobile rang again and answered it immediately. It was Harefield, they had a potential donor for me I had to get up to the hospital as soon as I could. I rushed into mum's room banging on the door and saying, "Get up, get up, GET UP". She admitted later that her first thought was that I couldn't sleep and had randomly decided to wake them up too, obviously stupidity runs in the family.

Nerves and excitement made me sick several times, which added to the general chaos going on, and mum cut her finger open on a bag zip which then proceeded to bleed profusely and leave a bloody trail along the banister which made it look like a murder scene. My oxygen levels (usually high 90's in a healthy person) had dropped to 79 after only a little movement so I was forced to sit, unable to help, until it was time to go. It took us an hour to get to Harefield. When we arrived I saw a lovely nurse who I had seen before on a previous call and was met by the co-ordinator who had phoned me, he said that they were waiting for news on the donor's tissue typing which should be back within the hour. I was weighed, had my ob's done and then it was time for bloods. I managed to get through about 12 of the 15 or so vials to fill before the vein failed and I was told I needed another sited. Just as they were about to do that, my co-ordinator came back, the donor was not a good enough match for me, the transplant wouldn't be going ahead.

I told them I didn't want anymore blood taken (there was no point now)and we packed everything back up to go home again. After travelling all that way, we were at the hospital for just half an hour.

To add insult to injury the journey home was horrendous. It took us just over an hour to get to Harefield but over three hours to get home. We were caught in school run/rush hour traffic, everywhere we turned was grid locked, long winding lines of cars. All we wanted was to get home to lick our wounds.

When we finally got back we were all exhausted and me more than anyone. I could barely crawl up the stairs and into bed. My back and hip were absolute agony and I had a thumping headache. Everytime I moved or coughed my hip would sear with pain, from sciatica caused by sitting for hours in the car. Mum brought me a bowl of water to wash my hands as I couldn't make it to the bathroom for a while. I felt so drained physically and mentally. Later on I managed a bath, I just felt so grubby. Then laid out on the bed for the rest of the day. I felt so empty and numb. As far as I knew the lungs that hadn't been any good for me had gone to someone who was a better match. While I didn't begrudge anyone, it hurt to know that someone else had heard the news I was so desperate to hear, that their transplant was a go ahead. I had come so close and yet my chance had slipped through my fingers once again.

For the first time in ages I didn't do my overnight feed. I fell off to sleep after not too long and had a decent night to recharge my batteries. Today I am still exhausted and will be for a few days to come. Nevermore so I have I felt the strain of the constant battle to stay alive. Every little thing sets me back physically, and mentally too, just when I feel I'm on more solid ground again something else comes along to spin me out of control. Then there's the long, ardous struggle to claw back what I have lost.

I've said before that the wait for transplant throws up so many emotions that you could never imagine it would. I never thought it possible to feel so many conflicting things at one time, to get so hopelessly lost in the logistics of it all, or to have my mood change so rapidly as it does now. False alarms like this intensify all these emotions. Hope dangled in front of you then replaced by bitter disappointment. Constant questions of whether the right call will ever surface, will i ever be called again? How much longer will this go on for? How will I cope?
Today I have gone from shell-shocked, to angry, to crying, to smiling and a hundred things in between.

I heard earlier that the lungs in question were not used after all as there was a problem further down the line, which made it easier to bear in one instance but sad they couldn't help anyone in another.

A few weeks ago I went to my CF clinic and told them exactly how I'd been feeling. I saw the head of CF care, and discussed how I can see a slow decline from even a months ago. Since Christmas everything has got a bit harder, I rely on mum for more, and I can count on one hand the number of times I've ventured out. She told me that she felt my smaller airways were hardening now which would account for this, there is nothing else they can do to help this with medication.

Right back at call number 3 I had it in my head that 5 would be my lucky number, this unshakeable feeling that number 5 would be the one. I know now it wasn't. This makes it even more difficult. I am fed up of hearing the glibe words "it will be number such and such" that changes as every call goes by. I just hope that I will be one of the lucky ones, this can't carry on much longer.