Friday, October 17, 2008
I'm on the LIST!!!!!!
As of October 8th, 2008, I am officially on the transplant list! 3-5 year wait, here I come!
Tuesday, May 13, 2008
So now I wait to wait again
Well, since February, I got an AV Fistula in my arm, which is where they connect an artery and vein together so that I can have dialysis out of my arm. After 7 weeks, I started being able to use it last week. So hopefully if it continues to work, I'll be getting my catheter out after the 18th..just a bit over 6 months after I got one in.
Right now I'm waiting for a letter from Northwestern saying I'm on the region's transplant list. The transplant doctor is saying I'd be on the list for probably about 3 years.
Right now I'm waiting for a letter from Northwestern saying I'm on the region's transplant list. The transplant doctor is saying I'd be on the list for probably about 3 years.
Sunday, February 24, 2008
What's happened since November
Well, I haven't really updated the general population since that November, so I think I will now.
A week after getting out of the hospital I ended up back in the E.R. since I had a fever, but was sent home a few hours later with antibiotics for a believed U.T.I.
The bone marrow test came back with no abnormalities, but that I did have the bone marrow at that time of a 50 year old, most likely from a virus that attacked the blood. Now that the virus had made it's way through my body my hemotologist saw no real threat and told me to see him in three months (which is 3/21/08). My dialysis has of course continued, and has increased by 15 minutes due to my height. I changed centers so that I could go to school in Tinley Park and then come back to Naperville for a 5-9pm session Monday, Wednesday, and Friday. I get my blood drawn there every other week, and I currently do not have anemia, and my other counts look pretty good if I don't say so myself.
My kidney biopsy was finally done in January. My results have been shared with me slowly within the last month. It turns out that my kidney problems are non-reversable. My nephrologist says it could have been happening anywhere from a few months to a few years. (though my mom and I think it started when my blood virus came about). My kidneys are too scarred to every be able to know what happened to make them that way. I know have what doctors call "Chronic Kidney Failure". So now I am in the process of getting tested to get on the Illinois Kidney Transplant list, which is an approximately 5 year waiting list. Live donor has a much shorter waiting list, since once I find a donor that matches me (and I have the most common, AB+, so I can accept from just about anybody that's under 60, no high-blood pressure, and no diabetes), I could have a transplant. The only slight road block may be if I got some odd antibodies from any of the 4 blood transfusions I recieved in the hospital. In that case, it may take a bit more challenging time looking for someone to match that.
At this point, my hope is to get a transplant next Feb. or later, when I'll be done with school. After my transplant, I'll take antirejection pills everyday for the rest of my life.
So, right now I'm waiting for my appointment to get my permanent catheter in the works, and trying to contact Northwestern to make appointments to get tests done.
~Jess
A week after getting out of the hospital I ended up back in the E.R. since I had a fever, but was sent home a few hours later with antibiotics for a believed U.T.I.
The bone marrow test came back with no abnormalities, but that I did have the bone marrow at that time of a 50 year old, most likely from a virus that attacked the blood. Now that the virus had made it's way through my body my hemotologist saw no real threat and told me to see him in three months (which is 3/21/08). My dialysis has of course continued, and has increased by 15 minutes due to my height. I changed centers so that I could go to school in Tinley Park and then come back to Naperville for a 5-9pm session Monday, Wednesday, and Friday. I get my blood drawn there every other week, and I currently do not have anemia, and my other counts look pretty good if I don't say so myself.
My kidney biopsy was finally done in January. My results have been shared with me slowly within the last month. It turns out that my kidney problems are non-reversable. My nephrologist says it could have been happening anywhere from a few months to a few years. (though my mom and I think it started when my blood virus came about). My kidneys are too scarred to every be able to know what happened to make them that way. I know have what doctors call "Chronic Kidney Failure". So now I am in the process of getting tested to get on the Illinois Kidney Transplant list, which is an approximately 5 year waiting list. Live donor has a much shorter waiting list, since once I find a donor that matches me (and I have the most common, AB+, so I can accept from just about anybody that's under 60, no high-blood pressure, and no diabetes), I could have a transplant. The only slight road block may be if I got some odd antibodies from any of the 4 blood transfusions I recieved in the hospital. In that case, it may take a bit more challenging time looking for someone to match that.
At this point, my hope is to get a transplant next Feb. or later, when I'll be done with school. After my transplant, I'll take antirejection pills everyday for the rest of my life.
So, right now I'm waiting for my appointment to get my permanent catheter in the works, and trying to contact Northwestern to make appointments to get tests done.
~Jess
My hospital visit in November
--This is what I posted on my myspace after I got out of my hospital stay in November, 2007--
(11/28/07)
Hey everybody! I know everyone has been wondering what happened to me this past few weeks health wise. I also know that different people know different amounts, so I'll put you all on the same page.
At the end of October, I started getting tired extremely early, but eh, I was getting up at 5 am for school so it was no big deal to me. Then the first Saturday of November I woke up to throwing up mucus. This lasted the weekend, and I went to the doctor Monday and he just gave me nausea meds and thought it was viral. I kept throwing up mucus (never food mind you) the rest of the week, and called him Friday. He said that if I threw up Sunday he wanted to see me Monday, and gave me more meds.
So after throwing up 4 times Sunday, I went in on Monday and he did xrays of my stomach which came back normal, and a complete blood workup.Well Tuesday I went to school, and about the time I was to come home the doctor called and told my mom to get me to the hospital ASAP. My blood counts were horrible..my kreatin (sp?) was 31, its supposed to be 1, they start people on dialysis at 8. The kidney doctor who has been working 25 years has never seen a number that high. My hemocrit was 5.something, it's supposed to be 12-14 so I was extremely anemic. My platelet count was also very low. When I got to the ICU my temp was 94.8. None of the doctors still can believe I went to school, walked a mile and was THAT SICK. I guess I'm just an overachiever.So of course I was admitted, got an emergency catheder in my neck, started on dialysis at 1am, and they knew my kidneys weren't working right, but not sure why. I was in the hospital 10 days, but they could never do a kidney biopsy cause my platelets were too low. They think that I have a blood disorder that caused the kidneys to stop working, so my platelets stayed leveled enough for a bone marrow test to be done Monday, and the results should be back next Monday. Also I stll have to get a specific blood test done. I'm currently on dialysis 3x a week until we figure out what to do.So, in a nutshell, I really know nothing. But I am starting to feel better!
(11/28/07)
Hey everybody! I know everyone has been wondering what happened to me this past few weeks health wise. I also know that different people know different amounts, so I'll put you all on the same page.
At the end of October, I started getting tired extremely early, but eh, I was getting up at 5 am for school so it was no big deal to me. Then the first Saturday of November I woke up to throwing up mucus. This lasted the weekend, and I went to the doctor Monday and he just gave me nausea meds and thought it was viral. I kept throwing up mucus (never food mind you) the rest of the week, and called him Friday. He said that if I threw up Sunday he wanted to see me Monday, and gave me more meds.
So after throwing up 4 times Sunday, I went in on Monday and he did xrays of my stomach which came back normal, and a complete blood workup.Well Tuesday I went to school, and about the time I was to come home the doctor called and told my mom to get me to the hospital ASAP. My blood counts were horrible..my kreatin (sp?) was 31, its supposed to be 1, they start people on dialysis at 8. The kidney doctor who has been working 25 years has never seen a number that high. My hemocrit was 5.something, it's supposed to be 12-14 so I was extremely anemic. My platelet count was also very low. When I got to the ICU my temp was 94.8. None of the doctors still can believe I went to school, walked a mile and was THAT SICK. I guess I'm just an overachiever.So of course I was admitted, got an emergency catheder in my neck, started on dialysis at 1am, and they knew my kidneys weren't working right, but not sure why. I was in the hospital 10 days, but they could never do a kidney biopsy cause my platelets were too low. They think that I have a blood disorder that caused the kidneys to stop working, so my platelets stayed leveled enough for a bone marrow test to be done Monday, and the results should be back next Monday. Also I stll have to get a specific blood test done. I'm currently on dialysis 3x a week until we figure out what to do.So, in a nutshell, I really know nothing. But I am starting to feel better!
To start off...
Hi there. As most of you know, about 1 month after my 21st birthday I found out that I had kidney problems. I figured I'd start this blog to post about what is going on so I can share info with everyone easily.
~Jess
~Jess
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