Living Without HepC

This was a BBC televison documentary focusing on the stories of patients requiring liver transplants and how doctors decide which patients will receive them.

I wanted to watch it to learn how decisions about liver transplants are made within the NHS, how priority ratings are decided, how the systems work and what is involved in the transplant operation.

I found it very moving and distressing to watch. I was moved to tears in several places - when the family of a donor consider their decision to support the donation of their loved one’s organs, and seeing a young girl whose breathing is deteriorating as a result of her liver condition.

But mainly I was moved to tears as I faced the possibility that it could be me waiting for a transplant someday. If this treatment is not successful I could be given another course of treatment again. But if the virus is not eradicated from my blood stream, my liver will continue to deteriorate, become cirrhotic and a transplant is then the only course. I could also die waiting for a transplant. It would appear that only patients close to this point are given priority staus on the waiting lists. And, just as disturbingly, the new transplanted liver would also continue to be attacked by the virus and also become infected.

A painful, but useful, programme which strengthens my resolve to remain as positive as I can about this treatment and to ensure I do whatever is necessary to support the treatment and my liver.

I felt well again when I woke - no dreaded flu.

So I attended a business meeting with a client. I had started a project with their agency in the summer before I knew I would need this treatment. I had completed an initial report on the work before I went to Spain on holiday. At that stage I had no idea if I would be able to take the work to the next stage. I have always tried to maintain a clear boundary between the personal and professional so I had decided to leave my personal health issues aside. I couldn’t think what I could say anyhow. “I might be able to work on the next stage, but perhaps I will feel too ill - have to wait and see how I feel; will let you know” doesn’t really sound like the professional commitment I usually bring to my work.

Today I decide up-front is the best approach. So when he asked “how are you” I told him, and outlined my health problems and treatment. He replied he hoped I would like to continue to work with them on the project if I feel well enough to do so.

This makes me think that personal/professional boundaries can become too rigid; that sharing my personal issues led the client to not only talk about his personal health issues but to supportively hope our work will continue together. Interesting lesson.

Had more blood tests before my clinic appointment. The same lady phlebotomist who took my blood last week said I didn’t seem as “chirpy” as last time. That shut me up. Chirpy? I was thinking you wouldn’t be very chirpy if you knew you were shortly going to have to stick a needle in yourself. But then, doing her job, perhaps she wouldn’t have such pre-occupations.

I was feeling apprehensive - this week I knew what was in store, whereas last week it was a total shock!

When I saw Mynurse, she asked about my experiences over the previous week. Mynurse reassured me that low blood sugar levels are a side-effect of the interferon, that the blood tests from last week showed lowered blood sugar levels but not to any concerning extent.

When I pointed out the red splotch on my injection site, she predicted that I might end up with a collection of these. I joke with her that I will call myself Mr Splotchy - and will always be certain how many treatments I have had as I can count the splotches.

I had completely forgot all Mynurse’s instructions from last week about injecting myself and had to be told again. However, it all went smoothly and soon the injection was done.

No flu-like side effects!

Throughout this week, as each day began, I was pleased again to discover none of the flu-like symptoms had arrived. But I realise it is important not to take this for granted. I remind myself to take each day as it comes. Now it is Sunday evening and I am thinking about the trip to hospital again tomorrow and repeating the whole procedure. Again, I am reminding myself that the coming week might not be as free from side-effects as this one has been. However, it’s great to be able to say - 1 down and 47 to go!!

This morning when I got up I found I couldn’t get warm. Although the air temperature was chilly, it is most unlike me to feel there is a draught blowing up the legs of my jeans and up my t-shirt. I wondered if I was coming down with the flu. Ironically, Carol had suffered a dose of the flu during the week, while I remained flu-symptom free. Or perhaps the side-effects of the interferon had now emerged!

When Carol arrived home mid-morning with Danish pastries it seemed a really good idea to have one - now! Within a few minutes I felt better, warmed up. This seems to show that my blood sugar levels have been effected. A new experience for me and one which I will discuss with Mynurse, to check whether it has been caused by the medication.

I also notice that the site on my abdomen where I had my interferon injection has come up as a very vivid, if not livid, red blotch. As it hasn’t been itching or hurting I was surprised to discover it there, looking so red.