Monday, September 04, 2006

Numb finger & other side effects

Yes, i still have a numb finger. Well, when i say numb, i don't mean totally numb. I can still feel it if i stroke it or put it under the cold or hot tap, or pinch it. It is only the one finger at the moment and i expect it may go to the others in time.
My next hospital visit is on the 15th September. I will wait until then i think, unless it starts to hurt or go totally numb!
I don't think i have mentioned before that i also get mild side effects from my current HIV drugs. I have been on some sort of HIV medication since 1987 (yes, i wasn't even told for 3 years!). Firstly i was on the Concorde Trial for AZT and then another trial where the name of the drug has escaped me for now. But really, since i first started HIV treatment my side effects have been very mild, almost unnoticeable. That is to say until i started a drug called Indinavir!! It was a very potent drug for me for some reason or another. I can't remember how long i took it for but i think maybe for a year and a half. I remember going to Tunisia for a 'Star Wars' location finding holiday whislt on the drug and i still can't look at the photos of me! During my time on Indinavir (circa 2000) my face changed shape (lipodistrophy), the hair on my head went very thin and light. I lost all the hair on my arms and legs. I got kidney stones and dry, itchy skin all over my body which wasn't very nice. But the worse thing that the drug caused was i had these tiny red bubble type things growing out from the sides of my nails on both my big toes, They got bigger and bigger and very painful! The doctors hadn't seen them before and even sent me to the hospital photographer to have them documented. I had 4 of them, each the size of a large kidney bean. And red in colour. I had to wear sandles for several months so my toes could stick out and not be touched by anything. Just thinking about it now makes me cringe! I had to wash them and re-bandage them every day. They kept bleeding and discharging some kind of fluid too. In the end the RFH decided to cut them off. So i had them cut away and half my nail too. But after a month they had grown back and were worse than they had been originally. So, in for another op and cut away again, this time all the nail too and this did the trick. My goodness, those things were horrible!! It was called 'Chronic Paronychia'. Obviously, by this time i had been taken off Indinavir and put onto something else.
I used to say to myself at the start of my Hep C treatment that if i coped with all that, i can cope with this. I think it has helped me a lot thinking that way.
The only side effects i get at the moment from my HIV drugs are a really odd feeling of being out of my body so to speak. I feel that if i cut my self or punched a wall really hard, well, i feel as if i wouldn't feel it!. It only happens in the evening a couple of hours after my evening drug gulp, which is and always has been at 20:27pm every day since about 1987. Some evenings are worse than others. It really seems to depend on what i have eaten. And if i am out mountain biking at the time i take them i don't hardly feel it at all. Maybe because my heart rate is increased? I am fine in the morning because i have a slightly different concoction, & i am lucky enough to be able to go back to sleep after my morning drug gulp at 08:27am for about 2 hours as i don't work.
I was out on my bike this afternoon, cycling around Leith Hill & Holmbury Hill on the North Downs. It was very quiet and it sometimes get a little lonely all on your own. But i do come across other mountain bikers during the day. I even fixed a puncture for a fellow MTB'er whom was pushing his bike down a very steep track. My good deed for the day:) I needed the rest anyway. Oh, and at the top of Leith Hill, i had a slice of date & marmalade cake that my mum made me. Lovely!

Jason

4 comments:

Anonymous said...

excellent blog! The whole thing! You sound strong. Take care.

I'm at 22 weeks and counting.

Anonymous said...

I just read it again and still can't believe how strong you are. You've climbed the mountain and still laugh. Amazing!

Jason Paul Tolmie said...

Hi Ample,
I Love the name of your blog. And is Ample your real name? It is a Lovely name.
Anyway, i don't know where i get the strength from. I suppose maybe over the last 30 odd years, with the Haemophilia first, then HIV & (hopefully) Hep C last, i have just seemed to develop this inner strength that even i find hard to comprehend at times. But i am lucky enough to have got it from somewhere. I will be climbing this mountain for the rest of my life i think. To be quite honest, i really don't know how i would cope without this mountain.

Take care & keep on making pizza:)

Chris Vacano said...

Hey Jason,

Being in a similar boat, I agree that a lifetime of chronic conditions has toughened you up. I often think of my various conditions (hemophilia, HIV and now HepC) as the "crucible in which my metal (hmmm... mettle?) has been fired."

Not sure what HIV cocktail you're on now, but you might talk to your doctor about Tenofovir+Lamivudine+Efavirenz. It's relatively easy to handle, and the bonus is, it's 3 pills, once a day (I do mine before bed). The one tricky part is that the Lamivudine might cross-react with the Ribavirin, but you may find it's at least worth asking about.

Hang in there, and keep an eye on that finger.

Chris