We thought we'd go home Friday (Day 4), but here we still are. Richardl's creatinine was going down down down - had gotten all the way to 2.1, then yesterday it popped back up to 2.7. His white count is very low, so they slowed the cellcept. Also, all of a sudden, a large area of redness and swelling on one foot. The doctor's say that if the labs are not better today, they'll want a kidney biopsy.
When they said that, all Richard could hear is "rejection". He's really down. Has anyone had any experience with any of this? The doctors have not mentioned the word, but it's really scary for us. I'm so glad they didn't send him home too early.
We appreciate all of the messages from the only people that I know truly understand what we're going through.
We're hanging it there, but it's tough right now.
Carolyn
Richard is Not Doing So Well - Anyone have Ideas?
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Carolyn in CA
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- Location: Livermore, CA
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JMan
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Sorry to hear things aren't smooth sailing..
Not sure about the redness.. the low WBC could indeed be the Cellcept. its known for it and getting the balance right is tricky.. Some people just don't react well to it.
As for the biopsy. Its the only 100% sure way of checking for 'suspected' rejection.
All you can do is hope they quickly get on top of anything that IS manifest and that it gets sorted out..
Good luck and hang in there.....
Not sure about the redness.. the low WBC could indeed be the Cellcept. its known for it and getting the balance right is tricky.. Some people just don't react well to it.
As for the biopsy. Its the only 100% sure way of checking for 'suspected' rejection.
All you can do is hope they quickly get on top of anything that IS manifest and that it gets sorted out..
Good luck and hang in there.....
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
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L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
Re:Ideas
Though we are going back a long time I do remember that we were told that rejection is looked for around about day 5-7 and its really quite common. It is most often solvable and maybe thats what you are experiencing now. Good luck and keep us posted.
Things sure don't go the way we would like them to go at times. I hope things go well for you very soon.
Tx centers have to check for rejection, but there a lot of factors that can affect creatinine which do not necessarily involve rejection. It's been a year and half since my transplant and I still at times have edema (swelling) in my left foot (tx side). I really have to watch salt intake and sometimes need to take lasix even though the kidney is doing well to rid my body of excess fluids.
I had drug interactions early on after tx that pushed my creatine up to 5.6 from 1.1 a few days after surgery. Too much immunosuppressants or certain drugs in combination with others can affect creatinine levels. My experience with rejection is, creatine generally continues to elevate rather than vascillating up and down.
It must have taken me four months until my creatine level came back to the 1.1 level I left the tx center with originally. My levels were "yo yoing" during that four month period.
Try to be patient an give your body time to work out the durg issues assuming you are not in rejection. If you are rejecting, they certainly have great new drugs to stabilize the rejection and get you back on the road to recovery.
Tx centers have to check for rejection, but there a lot of factors that can affect creatinine which do not necessarily involve rejection. It's been a year and half since my transplant and I still at times have edema (swelling) in my left foot (tx side). I really have to watch salt intake and sometimes need to take lasix even though the kidney is doing well to rid my body of excess fluids.
I had drug interactions early on after tx that pushed my creatine up to 5.6 from 1.1 a few days after surgery. Too much immunosuppressants or certain drugs in combination with others can affect creatinine levels. My experience with rejection is, creatine generally continues to elevate rather than vascillating up and down.
It must have taken me four months until my creatine level came back to the 1.1 level I left the tx center with originally. My levels were "yo yoing" during that four month period.
Try to be patient an give your body time to work out the durg issues assuming you are not in rejection. If you are rejecting, they certainly have great new drugs to stabilize the rejection and get you back on the road to recovery.
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amanda in CA
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- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
rejection
Hi, even if it is rejection, this is very common in the early days of a transplant. I do remember reading some research that indicated an early rejection was actually beneficial (can't remember why). Amanda
Dear Carolyn and Richard,
It seems that after your transplant, everything should go smoothly, but that is often the time that most problems occur. I agree with everything everyone else has said about drug side effects, etc. Even something seemingly as inconsequential as a bit of dehydration can elevate your creatinine. When I had my tx, the kidney was a perfect match yet did not begin to work right away...for a few days I had to go back on dialysis and I thought, "Why did I do this?"
After awhile, when the kidney did not start, they went back in and removed the cortex around it...it began to work on the operating room table and hasn't been stopped by rejection, injury or anything else for 27 years. Sometimes it is something as simple as that that throws everything else "off course".
Hardly anyone I know of has had a quick and easy time after transplant...and as far as I know, biopsies are fairly common- especially if you are on certain anti-rejection meds. Someone else who has had more experience with those drugs will be more informed about this than I am.
I understand the fears and concerns...I think we all have had those times when we feel we are at a loss for words to describe what we are going through and it's harder when you are "new" to the procedure or treatment. Ask your doctor what he thinks about it...sometimes just not knowing is the hardest part!
You are both in my prayers! Please let us know as to how Richard is coming along...God Bless...
Pam
It seems that after your transplant, everything should go smoothly, but that is often the time that most problems occur. I agree with everything everyone else has said about drug side effects, etc. Even something seemingly as inconsequential as a bit of dehydration can elevate your creatinine. When I had my tx, the kidney was a perfect match yet did not begin to work right away...for a few days I had to go back on dialysis and I thought, "Why did I do this?"
After awhile, when the kidney did not start, they went back in and removed the cortex around it...it began to work on the operating room table and hasn't been stopped by rejection, injury or anything else for 27 years. Sometimes it is something as simple as that that throws everything else "off course".
Hardly anyone I know of has had a quick and easy time after transplant...and as far as I know, biopsies are fairly common- especially if you are on certain anti-rejection meds. Someone else who has had more experience with those drugs will be more informed about this than I am.
I understand the fears and concerns...I think we all have had those times when we feel we are at a loss for words to describe what we are going through and it's harder when you are "new" to the procedure or treatment. Ask your doctor what he thinks about it...sometimes just not knowing is the hardest part!
You are both in my prayers! Please let us know as to how Richard is coming along...God Bless...
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Romans 8:28
don't give up ....
i had a rejection even without the biopsy yet....
the meds. that they used were very high powered anitbotic like tymoglobin and the steriod was a dextrose mix that raised my sugar level. anyway my numbers dropped and i was released from the hospital after a week.
so there is hope...just ask the doctors what their game plan is and mention these two drugs.
good luck and keep up posted
the meds. that they used were very high powered anitbotic like tymoglobin and the steriod was a dextrose mix that raised my sugar level. anyway my numbers dropped and i was released from the hospital after a week.
so there is hope...just ask the doctors what their game plan is and mention these two drugs.
good luck and keep up posted