Transplant: Hemoglobin level

Posted by hello1234 @hello1234, Apr 16 6:33pm

Hi all,
I hope everyone is doing well. I have a question. I am almost at my 4 year kidney transplant anniversary. In the beginning, I was slightly anemic. Then my hemoglobin landed around 12.1. My latest lab is now showing 14.1 which is significantly elevated from my normal level.
I take Cellcept and Envarsus XR (Tacrolimis). What has been your experience with hemoglobin levels? Have you seen any elevated numbers like 14.1?
Thanks everyone!

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My husband had very elevated hemoglobin levels about 6 months post-transplant and ended up having to have a phlebotomy (like giving blood was not able to donate it). He also was placed on a medication, sorry I am not able to remember the name of the med right now. He has not had to undergo a phlebotomy again and the meds seem to keep the levels at bay. Before all this, I did not know you could have too much blood! So much to learn.

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@roxylulu22

My husband had very elevated hemoglobin levels about 6 months post-transplant and ended up having to have a phlebotomy (like giving blood was not able to donate it). He also was placed on a medication, sorry I am not able to remember the name of the med right now. He has not had to undergo a phlebotomy again and the meds seem to keep the levels at bay. Before all this, I did not know you could have too much blood! So much to learn.

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Thank you so much @roxylulu22 😊 Your note makes me feel much better. It's very comforting to me when I hear that someone experienced the same thing and there was a fairly easy solution. I really appreciate that you shared this positive experience with me.
You are correct...so much to learn!!

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@hello1234

Thank you so much @roxylulu22 😊 Your note makes me feel much better. It's very comforting to me when I hear that someone experienced the same thing and there was a fairly easy solution. I really appreciate that you shared this positive experience with me.
You are correct...so much to learn!!

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@hello12345 congrats on the transplant. What is your schedule for post transplant lab work and follow up with your transplant providers? Were you put on any medication post transplant to treat anemia? If so sometimes that backfires (too much, too often etc.) Have you asked your transplant coordinator about this?

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@hello1234

Thank you so much @roxylulu22 😊 Your note makes me feel much better. It's very comforting to me when I hear that someone experienced the same thing and there was a fairly easy solution. I really appreciate that you shared this positive experience with me.
You are correct...so much to learn!!

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I checked with my husband last night and the medication is a very low dose of Lisinopril. It is a blood pressure med but the side effect is that it lowers hemoglobin levels. He has been on that for about 9 months with no reoccurring issues.

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@roxylulu22

I checked with my husband last night and the medication is a very low dose of Lisinopril. It is a blood pressure med but the side effect is that it lowers hemoglobin levels. He has been on that for about 9 months with no reoccurring issues.

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Hi @roxylulu22 😊
Thank you so much for checking with your husband! It is excellent news that this drug can solve the issue with no recurring problems. I really appreciate you jumping into the conversation to help me. I will be seeing my local nephrologist soon to review the results, and it's nice to know there is a solution.
Thank you again! ❤

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You're welcome. Everyone is different and that of course might not be the corrective action that works for you, but yes, knowing it is not a HUGE deal and that there are easier corrections for some of things eases our nerves for sure. Congrats on your transplant and I hope you have a solution to this soon!

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Hello, Hello1234
My view 14.1 haemoglobin is still within the range (13.2 - 17.1 g/dL), In my case it has hovered around 16 (now 15.4) & above, most important parameter that I need to worry about is haematocrit preferrably the number should remain below 50, Xplant center recommends phelebotomy at hematocrit 55
In my case I have PTE ( post transplant erypthrocytosis (hope I got the spelling right) I have been told to watch this phenomena as this creates excess RBC and eventually blood clots and cardiac issues. This is not easy, basically I have been super careful of my diet to control this RBC & Haematocrit because every time you have a phlebotomy you loose a lot of iron in your blood and very hard to recover that iron .. its a big catch 22. I do take an ARB (Losartan) which reduces the Hemoglobin .. which controls the RBC count..( Good thing about losartan is - you don't lose your GFR... prior to the transplant I taking Valsartan which killed my kidney .. Thanks but no thanks to that Dr...every time any doctor talks about Valsartan I go thru "pre kidney transplant STRESS SYNDROME" immediately I distance my self from that Dr, ( basically the pre transplant Dr dropped the ball. My Creatinine Clearance was not above 30 .. the manufacturer's note for the valsartan medication clearly states that you can lose 30% of GFR if your Creatinine clearance is below 30.. which is what happened with me. (this Dr expedited the kidney failure.. my opinion)
Thanks for putting up with my write up.. Good Luck and keep us posted.

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Hi @hello1234 ,
Hope you're doing well. My hubby's hemoglobin was at steady 14.6 but the latest lab(mid April) shows 15.1. Most of his labs are within range except for platelet count, which is a side effect of his immunosuppressant medications. Recently had to cut back on Tac from 2mg 2x/day to 1mg/2mg day/night so the change in dosage could have affected hemoglobin? Requested neph to prescribe 1.5mg 2x/day instead.

Side note: heading to Mayo Az for 2 year check which does include US biopsy. Was supposed to go in March but had to postpone because of work schedule.

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@caretakermom

Hi @hello1234 ,
Hope you're doing well. My hubby's hemoglobin was at steady 14.6 but the latest lab(mid April) shows 15.1. Most of his labs are within range except for platelet count, which is a side effect of his immunosuppressant medications. Recently had to cut back on Tac from 2mg 2x/day to 1mg/2mg day/night so the change in dosage could have affected hemoglobin? Requested neph to prescribe 1.5mg 2x/day instead.

Side note: heading to Mayo Az for 2 year check which does include US biopsy. Was supposed to go in March but had to postpone because of work schedule.

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Hi @caretakermom 😊
It's so great to hear from you. It sounds like everything is going well with hubby which is excellent news. Congrats on hubby's successful 2 year anniversary! Please keep posted on his 2 year check. I am sure it will be a very positive visit worth celebrating.

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Hi @l0lag0lag0b3 😊
It's great to hear from you. Thank you so much for all the information. As usual, you always provide helpful details.
You are an excellent researcher!
Thanks so much for jumping in to help me with my hemoglobin question.

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