So, I've tried to take this month and recouperate as best I can. I guess that I was much more ill than I let on - I have that problem. I tend to solider on and power through things without really letting on how bad I'm doing. After I got my blood transfusion, I started to feel much better.
I'm still having a lot of problems with my bowel disease; I'm still having bleeding and such. My GI doctor is stymied, and he wants to refer me to Mt. Sinai Hospital for a second opinion. I know I'm going to get smacked for this by my wife, but I really don't hold out hope that they'll be able to do anything for me or tell me anything that the doctors I've seen haven't told me. To really treat this, I need a functioning kidney that can regulate the fluid level in my body... dialysis is literally killing me - ripping apart my insides.
I've also been on dialysis now for four years. That's four straight years. Four years of my young life. That's an entire trip through college. (If you're not me. I stuck around that bad boy for a few more years than I should have!)
I mean, a lot of wonderful things happened in those four years - I managed to get married to a girl I'm just crazy about, and I got to play a lot of music, make a movie with my family.... I've managed to live as well as I can in those four years. But it's been four years of being on that waiting list - the ache of hoping I get a kidney. It's so morbid, when you have the thought in the back of your head "I hope someone died today and donated their organs - and I'm a match....." I used to hold my phone a lot, waiting for "that" call. I don't any more.
Well, I hope I feel better. I think Spring will do me good, and it's right around the corner. So much to do, so little energy to do it with..... sigh.
~Steve
Hi. I'm Steve - you've found my blog. I talk about my experiences with dialysis and transplants all while trying to live a "normal" life. From a young man to a middle aged dad, insight and thoughts on life, love and living with ESRD - tinged with humor.
Monday, February 28, 2011
Tuesday, February 8, 2011
Gaining my bearings....
So yesterday I went into the hospital and got my blood transfusion. We did it in the acute dialysis unit at a local hospital - I got two units of blood. Yeah! Vampirism is IN baby. But seriously, I think it really helped a lot. My hematocrit level was amazingly low - most people who have number as low as mine are being pushed around in a wheelchair to an emergency room.
Because we do home dialysis, we use what's called "the buttonhole technique" on my fistula. For those not in the know, the buttonhole technique is where you use 15 gauge needles in the same spot, using the same angle, over and over until it builds up a "track" at the sites, which allows you to use "blunted" tip needles. This is supposed to extend the life of your fistula - but the same person who "sticks" you with the needle has to do it every time, in order to preserve the integrity of the established tracks. That person, for me, is my wife - so she came along yesterday and I was going to have her put the needles is for me, and then the staff at the acute unit could put me on the machine - and we'd all be happy.
However, when we arrived yesterday - they made the biggest stink about her doing it. She was, in fact, treated rudely by the staff - my wife is my biggest supporter and advocate, and I hers - we stood our ground. Eventually, they called my dialysis people who said "Let her do it!" and then they called my nephrologist who said "Are you crazy? Let her do it. She does it everyday." Finally, begrudgingly, they let her. Two seconds later, my needles were in and ready to go. Sigh. Bureaucracy. Paperwork and procedure get in the way of everything.
Anyway, the treatment was fine - I got my two units of blood, and Jordan stayed with me the entire treatment, and I went home. I was beat from the dialysis treatment, but I noticed I wasn't extremely winded as we walked back to the car. Which was awesome.
Hopefully we can keep my levels up - I can't function when they're so low. Well, I guess I can function, but I feel like I'm moving through a giant container of Jello.
Losing your "sharpness" of mind and body function is one of the most damning things about being sick. But that's a topic for another entry for sure. Right now, I'm just going to work on getting the best out of this blood transfusion. I hope I don't start to like "Twilight" or something now.
~Steve
Because we do home dialysis, we use what's called "the buttonhole technique" on my fistula. For those not in the know, the buttonhole technique is where you use 15 gauge needles in the same spot, using the same angle, over and over until it builds up a "track" at the sites, which allows you to use "blunted" tip needles. This is supposed to extend the life of your fistula - but the same person who "sticks" you with the needle has to do it every time, in order to preserve the integrity of the established tracks. That person, for me, is my wife - so she came along yesterday and I was going to have her put the needles is for me, and then the staff at the acute unit could put me on the machine - and we'd all be happy.
However, when we arrived yesterday - they made the biggest stink about her doing it. She was, in fact, treated rudely by the staff - my wife is my biggest supporter and advocate, and I hers - we stood our ground. Eventually, they called my dialysis people who said "Let her do it!" and then they called my nephrologist who said "Are you crazy? Let her do it. She does it everyday." Finally, begrudgingly, they let her. Two seconds later, my needles were in and ready to go. Sigh. Bureaucracy. Paperwork and procedure get in the way of everything.
Anyway, the treatment was fine - I got my two units of blood, and Jordan stayed with me the entire treatment, and I went home. I was beat from the dialysis treatment, but I noticed I wasn't extremely winded as we walked back to the car. Which was awesome.
Hopefully we can keep my levels up - I can't function when they're so low. Well, I guess I can function, but I feel like I'm moving through a giant container of Jello.
Losing your "sharpness" of mind and body function is one of the most damning things about being sick. But that's a topic for another entry for sure. Right now, I'm just going to work on getting the best out of this blood transfusion. I hope I don't start to like "Twilight" or something now.
~Steve
Thursday, February 3, 2011
Getting a blood transfusion
So, I've been having problems with this internal mucosal prolapse ulcer that bleeds in my colon. It developed because of all the hard, dry stools and straining that I've been doing. Dialysis sucks all the water out of your body, and often constipation is the result. Mine just developed into this headache that's been ruining my life - and there's little that can be done for it until I get a kidney transplant. Oof.
So, anyway, it looks like it's been bleeding a lot again, because my hemoglobin and hematocrit levels are critically low - and I have to go in the hospital to get two units of blood.
I feel fine today, but earlier in the week I wasn't feeling well at all - so hopefully this will help me to feel much better. I'm just sick of having to deal with all this stuff, and it making me feel like crap - and useless. I feel so helpless and useless when these conditions just tire me out to the point that I can barely do anything. I hope this helps.
~Steve
So, anyway, it looks like it's been bleeding a lot again, because my hemoglobin and hematocrit levels are critically low - and I have to go in the hospital to get two units of blood.
I feel fine today, but earlier in the week I wasn't feeling well at all - so hopefully this will help me to feel much better. I'm just sick of having to deal with all this stuff, and it making me feel like crap - and useless. I feel so helpless and useless when these conditions just tire me out to the point that I can barely do anything. I hope this helps.
~Steve
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