Here's how things are going for me lately. I haven't shared as much since i had the treatments for the rejection.
About 3 weeks ago i started having pain just below my elbow, on the inside of the arm.
Last week, just to the side of that a swollen bubble formed about an inch and a half wide. The ER said Phlebitis again. No clots this time. But that they also couldn't treat it because the hospital i went to wasn't trained to deal with post-transplant patients. All they knew was they couldn't give me their standard treatment of anti-flammatories because i can't take such things. I'm still seeing the post-transplant clinic til they clear up 100% the rejection issue. They had their own treatments but wouldn't do anything until they saw me first. By this time the Phlebitis had traveled from around my elbow down into the back of my hand (to those that don't know, Phlebitis is an inflammation of the artery causing it to harden and become painful). I called the clinic and, to keep it short, i still had to wait almost a week for my regular appointment, which was today.
I've been very tired the past few weeks as well. Usually after being up about 10 hours i start getting very sleepy, even though i'm sleeping 10-12 hours a day.
Last week i had another kidney biopsy. More painful and unpleasant than the first one.
Today i had the clinic visit finally. This is how that went... right as i was walking out the door i was hit out of no where with anxiety. Had it pretty bad, worst i've had in a while. I get there and have my blood drawn as usual. I got the lady that makes me nervous the way she does it (she just jabs it in). I'm already a bit phobic, worse than most people, about needles. So i'm having anxiety, i get the woman that makes me anxious to stick me, which makes me anxious. She left a purple bubble in the spot she stuck me. I put on weight, too =P .
Then I'm told that the results of the biopsy came in (they said they called ahead with this information, i never got any calls) and that there was still some slight inflammation in the kidney, nothing major, but they want it all cleared. So they want me to come in 3 days for an IV of steroids as well as boosting the steroids i'm taking at home.
I'm already anxious still, and now they want to stick me again for an IV. Well, this attempt took 3 times before one worked. I got so anxious after the first one my anxiety shot through the roof. They had to stop and give me a few minutes to try and calm down.
Also... about 2 months ago i started having problems with my stomach, nausea, loss of appetite etc.. so 2 weeks ago i had an appointment with a digestive specialist. He said whatever i was feeling didn't sound serious, but that something is going on and he wanted to do an endoscopy (use a camera to go down my throat and look into my stomach). I have this tomorrow morning. Though my stomach isn't giving me as many problems, i'm still having it done to make sure there is nothing that will cause it to start up again.
I go back Thurs and Fri for more steroid IVs.
And, back to the Phlebitis. I talked to the doc about that, and since this is the second time in a year i've developed Phlebitis she's concerned and has scheduled me with a Vascular specialist next Tues.
They have no clue why i am so tired.
And to add to the fun i was told i should be able to go back to work, and no longer need disability. I got my last check this month. There was no appeals process mentioned. It basically was a not so friendly letter implying i need to get off my butt and go to work and quit milking things.
Do to so much inactivity from constantly having things go wrong i've not been able to get into any shape to be able to go back to work. I couldn't handle a job, physically, right now. Not the kind of work i've always done (work that i HATE with a passion and dread having to go back to, at that).
I am battling a lot of discouragement over so much going wrong since my transplant. I was always hearing stories of people who felt like a new person, felt better than they had in years. There have been a few good moments, but far more problems. It's been a year and a half and i'm still having so much go wrong. I get paranoid anytime something feels weird or hurts, even if it's probably nothing, because i keep expecting more to go wrong. Right now all i can see of my future is a lifetime of feeling like crap, always having something go wrong, always being worried about what health problem i'm going to have next. How i'm ever going to do the things i need to do when i never feel good enough. And what am i going to do when i no longer have the limited support i have now? What will i do when i'm all alone and having to experience this? I'm referring to my dad, he's 81, and while he's a young 81, he's still up there. Right now all i see in my future is being sick, broke, lonely and having no help.
I actually anticipate my siblings being vultures when he dies. All 3. I feel pretty certain that they will all try to screw me over. Given what i know of their character and even of their past behaviors. So that will be a fun battle, of which i will have no clue how to handle any of it.
And the whole sick and lonely works into my still being single. But then i think how unfair it would be to bring someone into this situation. I was difficult enough of a person before i was sick, now sick and difficult. Kind of feels like if i ever met someone that if i really loved them i'd actually not get involved. Their life would be better off without having to mess with me and all this crap. But at the same time it's scary to think of my life as just me and no one else. And going through more problems alone. Two points to make here 1) no, this is not the only reason i want to be married. 2) to any of my friends on here, i'm referring to being physically alone, locally having no friends.
And i'm still going to counseling for the life long depression and apathy i battle. Feels like i'm not progressing as much as i'd like because i spend the whole time talking about what happened over the previous week, i can't ever get to focus on any one thing to work on. Though the good thing there is that my counselor is a Christian, which was a total surprise to me. So she will bring up the bible and Gods will and things like that. So it's nice to not have to hear the usual new age influenced counseling most offer.
Anyways, that's everything i can think of, for now at least.
Well, i'm told i don't open up on here often (which i had no clue people felt that way until i recently found out) so... there's some more.
