I'm happy to report that things are still going well. Blood work is done every 2 weeks now and my next visit to the clinic is in October. After that I will hopefully go to once a month blood work. I didn't realize how long it's been since I last posted until Vicky contacted me about reading my blog. Vicky, that is great that your numbers are holding steady. Yes diabetes is the reason my kidneys failed. My total function had held at a GFR of 22-24 for years. This was always scary because the doctor kept telling me I would hit a wall and just drop. Had gotten down to the 17 level and met with a surgeon who was to place a PD catheter but decided to hold off because I was not exibiting any symptoms. The metallic taste in the mouth, difficulty breathing and sleeping alot without feeling rested and itchy skin. I know you have other issues that cause some of these symptoms. On Novermber 11, I became ill with a sinus infection and that is when my function "hit the wall" and dropped to a GFR of 10. At the time of the transplant it was down to a 6. Dialysis had always scared me but when I got down to the GFR of 10, I was ready for anything that could help me feel better. My friend Ann had originally been diagnosed with Good Pasteur's (sp?). They tested her to make sure it was inactive at the time of transplant and it showed that it was indeed inactive. Problem was she didnt have that disease, she had Wegner's which has symptoms just like Good Pasteur's. I was told I'd be in the townhouse from 3 - 6 wks. It ended up being 2 wks and 4 days. Both of my friends, Ann and Guy did not have to have anyone stay with them. I did because of my swings in bloodsugars. My call for the kidney came the day before I was to start daily peritoneal dialysis. The dialysets of 26 cartons was to be delivered that Saturday. For everyone who has been reading this blog, please keep Vicky in your prayers as she starts the same journey.
Pam
Reccee and Sneakers
Olde English Bulldogs
Little John
Male Bullmastiff
Geddy
Female Bullmastiff
4 comments:
Pam, thanks for your answers. I know a good bit about Wegners. Sjogrens has a few similar symptoms. Were they able to stop her rejecting the kidney? This is the part that scares me....because my body fights itself...it doesn't recognize what is good and what is bad. I have very high antibodies. What tests did you go through prior to the transplant? I know all this will be answered soon for me, but it will be answered by medical professionals...not someone who actually went through it.
I think I know how you feel when you said that you could "hit the wall" at any time. Kinda like a sitting duck. I really don't have any symptoms except for anemia caused by bad kidney function. This just happened the past few months and now I take weekly procrit injections. It has helped tremendously! Did you have to take procrit?
I know I have so many questions...I guess it is the fear of the unknown? You have helped me a great bit and I appreciate it. I am sure I will have more questions for you and I know my experience will be different from yours. It just helps to talk to someone that has been through it.
Thanks again!
Vicky, yes they have been successful at stoping her from rejecting the kidney. They have such an arsenal of anti-rejection drugs now. They just added more to her list to help the kidney. Problem was though they told us to avoid any birds, anyone who is sick and newborn calfs and horses. Now honestly I dont remember being told about the baby cows and horses.And also not to handle animal waste. Like cleaning out a kitty litter box is a NoNo. Well they didnt go over the baby cows and horses with Ann either that I know of and she is a cattle farmer. So yes she had to assist in a birth of a baby cow without thought of what would happen. Because her body had such high doses anti rejection drugs, she came down mold in her lungs due to dealing with the baby cows. This right now is their main concern for her. While they are watching the kidney, they are more concerned about the mold because it has now gotten into her bloodstream. The tests I went through was 17 tubes of blood being drawn, chest xray, stress test and a vascular mapping where they put these cuffs over your entire legs and they inflate and somehow take a picture of how your veins are mapped out in your body and if any potential problems may arise after the surgery. Usually the kidney is placed on the right side but if your arteries dont have good circulation in them, they may decide to put it on your left. They talked about giving me Epo shots to help with my anemia but I never pushed for that. During surgery I lost alot of blood so my Hematacrit went from 33 down to 27 and eventually went down to 23 when I became dehydrated in June. After the transplant they'll tell you to drink 3 - 4 liters a day. BTW just a FYI if your BUN # is 20 times more than your Creatin # chances are your dehydrated. In June I had a scare of either my renal artery becoming blocked or I was in rejection. It was simply dehydration and that when I found out about the correlation of those numbers. Keep the questions coming, I started this in the hopes of connecting with others either going through this or had went through this.
Pam, I hope they get her mold infection under control. Many thoughts and prayers are being sent her way. You had a few tests, but not as many as I thought you would have to have. 17 TUBES OF BLOOD?? All at once? I have had 9 tubes at once.
That is really interesting about the BUN numbers! My BUN is just under 20x my creatine level. I'll have to watch that. My Hemacrit was down to 27.1 and hemoglobin was under 9 when I started taking the injections. My hemacrit was just over 30 and hemoglobiin almost 11 last month. I actually get to see the vampires tomorrow to check on these numbers.
I will definitely have more questions soon! Thanks!
Hi Pam! Are you still doing good? I just had my transplant class last week. I got a huge amount of info. I am thinking of doing NTAF. Did you do this? Take CAre!
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