Well lets backup a little,There are a few things I
should have mentioned in my first story.#1 would be
the problems with platelet counts.This is what clots
your blood and should be about 200,000 mine varied
between 45,000 and 65,000 not real good but I have
know a lot of people with worse counts then
mine.Anything below 19,000 and your suppose to bleed
out because your blood won't stay in your organs
anymore,Mine went to 13,000 I guess god was walking
whith me through this whole thing.|
As I said before I got out of the hospital on March 21st the first day of spring.Jeannie was freaking out my chestwound was still open,They call it a Mercedes cut,because it looks like the hood ornament on the car,It goes from the lower left side to the right side and in the middle theres a hole to your sternum.Dam!!!Did I say that???
The day I got home was a nice spring afternoon the physical therapist was there waiting for us to arrive.So I get out of the car pretty well and was doing ok on the crutches by then.When you get to my front door its about an 8 inch step up well guess what I didn't make it and fell flat on my face,(lol now)of course jeannie and the therapist were freaking but hey I was fine the human body isn't all that breakable.
The therapist came 3 days a week for a couple of weeks,By then I was getting around whith a cane so I didn't need her any longer.I also had nurses showing up twice a day to do my bandages this went on for about 5 weeks by then I was pretty well healed up plus Jeannie was doing a lot of it herself.
Come about the first of may I was able to start driving again.Plus I was getting around without a cane.As I remember about the first or 2nd week in june I was able to get out on the golf course and play a little golf it was great.After a while I worked my way up to 9 holes a day.
About August I started to have pain in the groin area every time I would breath in it would hurt.So back to boston again,They amitted me for tests but could find nothing wrong so they decided to treat me for C M V which most people have never heard of.Well come to find out about 50% of the U.S.population has this but you don't know it because your not immunosuppressed.I did not originaly have this I caught it from the liver donner.The best explanation I can give for this is that it's a form of herpes called herpes 7 but dosen't show up as the more traditional kind.
After a day of treatment I felt much better and went home after 5 days.Treatment was continued for 2 more weeks because I had no immunity to this.The treatment consists of puting a line in your arm that stays there for 2 weeks,And you learn to give your self the drug and to control the rate of flow that it goes in at.The drug is called Gancyclovier it's poisonous and radioactive.
Who would think you would be pumping that stuff into your arm,what really catches your eye is the big radioactive symbol on the bag.Dam!!!!!
About a year later I had a spot on my left cheek that was slowly growing so I made an appointment and had it checked out.Well the test came back as skin cancer whoopee!!!! what else could go wrong probably shouldn't have asked that question.So I went in one day and they cut it out pretty easy surgery and not much of a scar.They said I probably had it before the transplant but because of the drugs it grew a lot faster than normal.
The drugs I take cause a lot of poblems on there own,such as ringing in the ears all the time,My hands shake not real bad but enough so it's hard to do much with small items.The drugs also brought on gout attacks,And the gout medication brought on neuropathy which is a cold numb feeling in your feet.So I'm kind of caught in a catch 22 trying to balance drugs one aganst the other.
Januray 25th 1999 just got a notice from SSDI they whant to review my case to see if i'm still disabled enough to draw social security this should be real fun.I'm not expecting much support from the hospital at least that's the impression I get from the transplant coordinator it's all numbers to them,You see the more successful operations they have the more money they get from the Federal Goverment same thing goes for the more people you send back to work.Hey I have no problem with working but I know that I can't hold down a 40 hour a week job.Here in the state of Maine they have programs to retrain you but no money for them.And since I was told I could never drive trucks again I'm a little limited on what I can do..
A word about organ donation,The reason I support it is of course obvious.Im not going to go on a long crusade about it,All I ask is that you stop for a moment and think about it.Enough said.
So this pretty well covers my experinces to date with hep-c and my liver transplant.Over all I can't complain life's been pretty good so far.As things develope I'll continue on with this page.1-26-99
Continued on 6-18-99
Well let's get on with it,First the SSDI thing went pretty well.I just filled out some med forms,Gave a list of my problems,And what meds I'm taking and sent them in.I had to pay a short visit down to the SSDI office and talk to a case worker and that was it .I got a letter in the mail about two months later stating that my SSDI had been extended so that was a big relief.
There have been a few problems and a few more drugs added.The minor stuff has been moles growing here and there.every time I find a new one,I have to go back to the doctor to have it checked out.I never know if its just a mole or cancer again,And it's a nuisance because I see enough doctors as it is.
The big problem has been the neuropathy it has gotten worse.All though I do have some feeling in my feet the nerves are pretty much dead now.They can stick needles into them below the ankles and I don't feel IT.But I can feel the pressure of standing and walking.You also get tingling and burning in your feet with this,Plus my feet are cold all the time I have to wear wool socks to bed so I can keep my feet warm.
The doctors gave me a new drug to add to my collection (grin) it's called neurontin and it's supposed to lessen the problems with the neuropathy. At first they gave me 100mg 3 times a day.When you start taking neurontin it makes you dopey and tired, But it passes after 3 or 4 days.Now i'm on 200mg 3 times a day.All though it seems to help a little it doesn't do enough to eliminate the discomfort but it does lessen it slightly.
Other then these few things I'm pretty much holding my own,Nothing to earth shattering has happened in the last few months.I have now had my new liver for just over three and one half years and it has worked great.So really what more could I hope for..
Well that brings things pretty well up to date,As always feel free to e-mail me with a question or just to chat and I will continue this page as needed.
Things have changed a little since the last time I wrote. the hepatitis is back with a vengeance and taking no prisoners.My liver levels are very high and I'm in a mild form of rejection but I feel the same as before. The Doctors say there isn't much if anything that can be done since all the treatments for hep-c seem to involve raising ones immune system to fight it.
What this means is the hepatitis is doing a lot of damage to my liver but I could go on a long time with no problems so I just keep on doing what I do and hoping for the best and maybe a cure.
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