Barry's CD4 and Viral load

Forgot to say - The results of Barry's CD4 and Viral load tests

His CD4 is 9 - god 9!!! - the threshold that they used to consider it AIDs ( along with viral load results ) is 200 apparently!!!!

So I am actually surprised that he is as well as he is!!!!!

Viral Load I think they said was 55,000? not as bad as his CD4 but still terrible!!!

But despite this he actually did seem a bit better today - but rang tonight to say he was vomiting. Poor Barry its really so miserable to be sick in a hospital bed, far worse than vomiting when at home.

This is probably a side effect of the Septrim ( god I'd never be able to take the drugs he is on) Well I hope it was a side effect.
All I can do is ring him in the morning and hope he feels better.

Medications and Plans

Talked to our niece yesterday - the respiratory doctor - and she said that Septrim is the right drug for him to be on.

Septrim may be an old medication but she said it still works for pcp pneumonia. Thank goodness we have a neice that knows as she is a doctor and in this area of work. Thank you for what you are doing to help us!

But I am also concerned that he is not yet on HIV drugs, which I think will be his best chance of beating this.

On one hand why do I care?

He has totally betrayed me and there is no way I can go and see him today and I do not know when or if I will feel able to go and see him.
For one thing I know that right now if I did I would hit him, yes, I would slap him hard in that hospital bed probably scream and rave at him and it would not be fair on those other poor patients in that bay. They don't need that disturbing them when they are so ill.

On the other hand I need him to get over this crisis, so he can come home to me and help me sort out all the things we have to sort out.
We need to sell this house - which also entails chucking out incredible amounts of junk we have accumulated, and I am just not physically up to doing this on my own.

And we then have to try to get enough for this house to buy Caja a small flat but one big enough for her to have a flat mate to help her pay the bills, and us a small place we can live in until he dies, or I do.

Where I live will have to be near the hospital, within 5 miles. I just can not drive or travel far when feeling unwell and I guess I will feel ill one day? And I need to be near enough to get to the HIV clinic at Treliske for checks and treatment, near enough to meet the people from the positively Kernow group and counsellors etc, and of course near enough to the hospital that if I need procedures or to be admitted it is near enough for me to get there if feeling ill and near enough for me to be able to do this on my own without having to get a friend or my daughter to drive me. I want to disrupt Caja's life as little as possible - we have interfered with her life too much already and others lives.

A tall order as anywhere I live will have to be within 5 miles of the Royal Cornwall Hospital, and house and flat prices are expensive that near to Truro.

But I am going to try.

I went to see Barry for three hours at the hospital yesterday - three hours was the longest I could get on the parking meter without having to go back out to top it up.

It is so sad to see Barry, such a dignified, quiet man, lying on a hospital bed with a drip in his arm and oxygen up his nose.
He has had several different IV antibiotics tried and one by mouth, and none seem to have had much effect.

One of them turned him bright red on his chest and face as you can see from the picture, but they were not sure which one it is and being a weekend I only got to speak to a student nurse!

He says he is not having any other side effects, which is good. As every time I have been on IV antibiotics ( when I had the fixator on my leg and got infected and before this when I had peritonitis after my appendix burst) I have become very ill from side effects of the IV medication. One time I had anaphylactic shock and nearly died - at least he is tolerating theses drugs well- better than I would. ( which does make me worried for me if eventually I become unwell and have to have them)

But he just does not keep a note of what they are putting into his body. When I was there yesterday I asked the nurse who set up his latest IV what was in this and she said Septrim.

I am a bit worried about this now as I have looked it up and this is an 'older' antibiotic that was used in the early days of AIDs patients with pcp pneumonia. But many of them died!! i thought that treatment had moved on since then with lots of medication available to tackle such infections and he is on one used first for this in the 1980s?
And it is not seen now as being a very good idea to use for those with HIV: http://www.rethinking.org/bmj/response_34477.html

I am very concerned because they have not got the test results back to target his bugs specifically and being a weekend they may not until Monday.

And while they are trying different IV antibiotics they are not working as I know that if the IV antibiotic is having an effect you will start to feel better once one of two bags have run through.

But he does not feel any better - in fact he feels worse

He was able to walk around slowly when he first got there without too much chest pain and without coughing too much, but now he can hardly move without this. I worry that by Monday when they get the results, he will be so much worse. I am not feeling very confident at the moment about the treatment he is getting.

This is confirmed by the fact that when I go there yesterday ( Saturday) Barry said they had not changed his sheets since he had been there!!! He was admitted Wednesday!!!!!!

This is so shocking I will write about this in a new post.

How can people keep their dignity when they do not even get basic nursing care?