I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MooseMom on November 15, 2016, 11:18:24 AM
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I am 4 1/2 years post transplant.
I have been stable for most of that time.
My latest annual check up was in May, after which I was declared a "poster child for transplantation." My creatinine was 1.13 and my egfr was 54.
Things have suddenly gone pear shaped, and I don't know why.
In August, my creatinine suddenly went up to 1.33 and my egfr decreased to 44. My coordinator wasn't worried; she said they have plenty of patients who see these numbers decline during the summer. She told me that I have nothing to worry about.
I didn't have labs in September as I was out of the country for an extended period of time.
Labs on 27 October revealed creatinine at 1.42, egfr down to 40. My coordinator called and asked me if I had been doing anything different, and I explained that I had been doing a lot of work on my property, and she suggested I really push fluids because she was almost certain that lack of proper hydration was the culprit. She also wanted me to have a blood draw for creatinine, which I did.
I got those results back today, and my creatinine is now at 1.48, egfr 38. I am baffled.
Of course both my husband and I have put in calls to my coordinator, but she has not yet responded. So I thought I'd turn to IHD and see if any of you had any ideas.
Other than bun, my other numbers have all remained within normal range.
It has occurred to me that maybe BKV is a possible culprit. I have read up on it and understand that treating it means, essentially, reducing and/or changing the immunosuppressants and allowing the body's immune system to conquer it. I also know that I am getting waaay ahead of myself, but we all know that that goes with the territory.
If anyone has any thoughts, I'd welcome them. This is the first "crisis" I've had, and I am extremely upset and am finding it hard to understand how this (whatever it is) could so suddenly happen.
Thank you very much.
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No! This can't be. Every time I hear of someone with a transplant in possible trouble, I feel panic, both on the part of the other person and for my own future.
Are they planning a biopsy to check for possible rejection?
I've had a BKV blood test every six months.
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We all have very different experiences with transplant, and yours has been extraordinarily, amazingly stable. My creatinine baseline is in the 150 - 180 range (1.71 - 2.05) and it's been that way for roughly the entire 14 + years of my transplant. Sometimes I go a bit lower, sometimes a bit higher. This could be a simple matter of a bit of aging of your transplant. For the time being, I would extra push the fluids and try to keep both fluids and exercise the day before labs consistent. That can make a big difference.
I absolutely get how scary this is, but try to relax a bit. The increases are quite small, although they are steady. Keep an eye on it and don't let your tx team get lax. I hope things will steady out for you. Please keep us posted.
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Oh, and just to add, don't get too obsessed with the eGFR. My kidney problems pre-date the use of this marker and from what I have read, it can be very unreliable. Especially in women as it makes a lot of assumptions about your size and muscle mass along with other things involved in the calculation. It's a decent ball-park sort of guideline, but those very small changes in your creatinine can very seriously affect the eGFR (a calculated value) so the proportional change seems like a lot.
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I have nothing substantive to add--as I have no experience with tx-- but I do empathize with how concerning this must be to you. It would be to me. I hope there is a good explanation for what's going on that can alleviate your stress. Good luck.
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Ya'll make good points, and it reminds me that for a while post-transplant, my creatinine jumped from 0.7 to 1.4something. My TX center said it was likely permanent but they weren't concerned. I freaked out. It turned out they were wrong. My creatinine returned to 0.71 a few months later.
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OK. Here goes.
I've had several discussions/emails with my coordinator who has spoken with my tx neph's assistant (who I had seen back in May, the one who told me I was the poster child for tx).
First of all, they are very nice people.
They don't seem to be all that worried. I told them that it may very well be that there's nothing to be concerned about. I told them I understood that creatinine and egfr are numbers that simply reflect one moment in time, a snapshot, if you will. However, I sense that I am looking at a trend, and as a patient who understands the responsibility of maintaining a transplanted kidney and who sees herself as the captain of her own ship, I felt like I needed to discuss my concerns earlier rather than later.
So, they have sent me two orders, one for all of the usual bits PLUS tests for bkv, cmv and ebv. In the order, there is also a urinalysis, so they'll be testing for protein and UTI.
The second order is for DSA.
I've already set up an appointment next week to have my blood drawn.
Here's the kicker. I have a DSA done each year as I'm sure most tx patients do. Before my annual appointment, I mosey on over to Quest (like I've done for yonks), have my blood drawn and ALSO have my blood drawn into a special vial provided by my tx center (UW-Madison). All of the other vials that Quest uses get sent to Quest's lab, and I get my results from Quest.
HOWEVER, the filled DSA vial is given back to me. I put it in the bags and box that have been provided by UW, and I mail it back to their HLA lab. Easy peezy lemon squeezy, right? It always has been in the past! I do this every damn year!
Well, it seems that the Corporate bods at Quest have just recently decided that they will no long draw blood into vials that will be going to an outside facility...like a transplant center.
I called my local Quest "patient service center" after getting my order from my coordinator because I had a question about having the sample "spun down". Once it became clear to them that I was talking about sending this specimen on to someplace other than Quest, that's when they told me they could no longer do it.
I couldn't believe it.
My PCP's office is closed on Tuesdays (today), so I will contact them tomorrow to see what I'm supposed to do. They have lots of tx patients (my original neph is in that practice), so maybe they can tell me what to do.
Surely I've misunderstood something. Am I going to have to go to Madison each year just to have this one blood draw?
The DSA vial and box are already in the mail to me, so I will take it with me next week when I go to Quest for my other labs. Maybe I've misunderstood. But I don't think so, really.
I've relayed this to my coordinator, and she told me to try it on anyway, but if they refuse, then skip it. I don't think they're worried about rejection, especially since I am so compliant and am asymptomatic. But if my creatinine keeps going up, they'll have me come up for a biopsy and will do the DSA then.
So, that's the story. I don't know if it will have a happy ending or not as it seems that the plot is still being written.
But I just can't believe that about Quest. Do any of you go to Quest for your blood draws? Have you ever heard anything like this?
I've emailed their patient relations department and complained. Think they'll change their minds after reading MooseMom's little hissy fit? Doubt it.
Thank you all for taking the time to respond. I am very grateful. Thank you.
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I had a problem with Quest, they would not do labs on Grandson because I didn't have his actual medical card. We had the numbers, just not the card.
The solution: Walked into St Joseph Hospital next door. They did it no problem
Call your local hospital, ask of their lab people will do the draw for you to send out to the tx lab.
Use them magic words. Please!
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Thanks for that, Charlie. I may end up having to do just that. I'm a bit concerned, though, that my insurance wouldn't cover blood draw charges without having a referral from my PCP, whose office is closed tomorrow (I thought it was closed today because they were not picking up the phone when I called). Perhaps my PCP will sort it out for me (I'm on BCBS HMO so can't really just show up at some medical facility without a referral or some other paperwork, I'm assuming). But yeah, that would be great if I could just do that!
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I'm so sorry you are going through this MooseMom. I can't even imagine the anxiety of it all. It's good they are testing everything and working closely with you. I'm praying this is just a bump in the road for you. I go to the lab at my local hospital. As long as I have an order from my doctor for other tests, they will do a courtesy draw for the vials I send to the transplant center without additional cost. You may have to find another lab, but I'm sure there is one who will accommodate you. My thoughts and prayers will be with you.
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I've never heard of the DSA test. Maybe they only do it here if they suspect rejection.
I wonder if some of the results could be caused by different test facilities. I think I heard somewhere once that results can vary by facility. I hope you just have a simple UTI though.
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The DSA vial and box are already in the mail to me, so I will take it with me next week when I go to Quest for my other labs. Maybe I've misunderstood. But I don't think so, really.
This was one of my biggest pains pre dialysis is getting the vials filled. The hospital labs will do it but will charge like $80 or $35 if I go to a reference lab for the hospital, but someone like Quest would do it for free (years ago) if I had another lab order to fill at the same time. A receptionist/assistant in my nephrologists office would do it, but if I miss judged the date and showed up when she was not there the other people looked at me like I'm crazy, and then she went back to school to become a dialysis nurse...
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I'll be waiting for your update. These are the episodes that make transplant patients unable to ever relax completely. I go to Quest but have never had to request "blood to go". My donor in Michigan had to do this all the time before the transplant and never had a problem. I thought this was very standard since they wouldn't send off this packaging to people if finding someone to do it was so difficult. I wonder if this is a trend. I hope this is just a little bump that will be smoothed out soon. Wishing you the best.
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Hello MooseMom,
I know this isn't exactly close for you, but Edward Hospital will do it no problem as a "courtesy draw". Just head over there with your tubes, box and packing and they will do the draw and give everything back to you. The lab tech who did mine was fascinated as this was the first time she had done a courtesy draw (she was really new).
If CDH is closer, call their Central Lab and see if they will do courtesy draws. My gut says they will do the same as Edward and their hours are usually more expansive than a PCP's office.
I'm sorry to hear that your creatinine is going wonky. Mine does the same in the fall, it has done so every year since I first was diagnosed with IgA back in 2000. I always say it's because I have issues with keeping hydrated in the fall/winter. Glad to see that UW is on top of everything as usual.
Paws crossed for you!
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I've never heard of the DSA test. Maybe they only do it here if they suspect rejection.
I wonder if some of the results could be caused by different test facilities. I think I heard somewhere once that results can vary by facility. I hope you just have a simple UTI though.
I have a DSA done every year as part of my annual checkup. It's "Donor Specific Antibodies", and I'm absolutely sure you've had one. Maybe they call it something different, like "HLA"? My coordinator really don't suspect rejection as I am religious with my meds and I don't have any symptoms. I think they are checking it just as standard procedure.
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I'll be waiting for your update. These are the episodes that make transplant patients unable to ever relax completely. I go to Quest but have never had to request "blood to go". My donor in Michigan had to do this all the time before the transplant and never had a problem. I thought this was very standard since they wouldn't send off this packaging to people if finding someone to do it was so difficult. I wonder if this is a trend. I hope this is just a little bump that will be smoothed out soon. Wishing you the best.
Thanks! You see, though, that's just it. I've had blood drawn for this test at Quest for four years now. They'd draw the blood into the special vial sent to me by my tx center, but I'd package it up properly and mail it back to Madison myself. But now Quest is telling me that they've had a change in policy, and all they've told me was that I'd have to meet with my doctors to make other arrangements. I'm still hoping it has all just been a misunderstanding.
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Hello MooseMom,
I know this isn't exactly close for you, but Edward Hospital will do it no problem as a "courtesy draw". Just head over there with your tubes, box and packing and they will do the draw and give everything back to you. The lab tech who did mine was fascinated as this was the first time she had done a courtesy draw (she was really new).
If CDH is closer, call their Central Lab and see if they will do courtesy draws. My gut says they will do the same as Edward and their hours are usually more expansive than a PCP's office.
I'm sorry to hear that your creatinine is going wonky. Mine does the same in the fall, it has done so every year since I first was diagnosed with IgA back in 2000. I always say it's because I have issues with keeping hydrated in the fall/winter. Glad to see that UW is on top of everything as usual.
Paws crossed for you!
It is very possible that my local hospital will do a courtesy draw. I will call them today. My tube and box should arrive in a day or two, so I have a little time. I'm hoping that someone in my PCP's office can do it, but they are closed today; I will contact them tomorrow.
My coordinator did tell me to push fluids as much as possible but to stop at the point where it feels like my eyeballs will float away!
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Red Tape Update!!!!
Yes, my local hospital will do courtesy draws, and I don't even have to make an appointment. I can just walk in.
However, if I don't want to pay out of pocket for this (the sample needs to be drawn AND spun, and the woman I talked to started talking about "handling charges"), I was told to contact my insurance company, so I did. I'm on BCBS HMO, so I know that I need a referral just to breathe. They spoke with the referral dept. at my PCP office, and they confirmed that yes, I will need a referral if I want my insurance to cover it.
Bottom line is that yes, my local hospital can do it, but I need a referral.
So, if any of you use Quest and have to have samples sent away to your tx center, it might be a good idea to call your local Quest Patient Service Center and clarify things before you show up with your little box and vial.
:stressed;
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Good to know about the Draw and Spin. I've never had to have my HLA tests for UW spun, it's always just draw, package and ship. But it's good info to file away for the future. Glad to hear that the hospital will be able to help you.
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Hi MOosemom. Sorry to see your post. Don't know if u saw my last post but my creatinine has crept a bit too an we are both 4 and half yr post tx now. I have had a few non kidney issues post tx as u know, notably a seizure 5 Mnths post tx and a serious bowel op 2 yrs post. Throughout all this kidney has been unaffected with creatinine stable in the 70s. Well just before we went to America last yr my creatinine went from around 74 to 84. Doc wasn't concerned but I pushed for another blood test 2 weeks later and it had jumped again to 90. They decided to reduce my tacro by 0.5mg and a week later bloods showed creatinine had reduced to 80 again. It stayed around 80 and 81 til this July when it went to 84. Doc wasn't concerned told me all was well and sent me on my way. Fast forward to october and creatinine creeped to 87. Now I know this isn't massively high but the trend concerns me and I am worried about rejection just when I'm feeling great. Had a cervical cancer scare a few Mnths ago. Fortunately didnt need treatment but I guess I just feel like once i don't have to worry about one thing another comes along. Plus our niece has had leukaemia since she was 1 and a bone marrow tx she is now 3 and just been told it has come back so she is starting treatment all over again.
I was supposed to be going for a blood test today as they put my tac up again by 0.5 mg but didnt get there as car battery was flat as i had left a light on. So will be getting bloods done tomorrow. THinking of u moosemom as i totaly understand how u r feeling right now. MY tx team don't seem concerened at all though! xx
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I've never had to have my HLA tests for UW spun, it's always just draw, package and ship.
I know! I looked back through my records, and I have DSA orders from previous years that specifically say NOT to spin down the sample, so I don't know why this sample needs to be spun. I have just emailed my coordinator to make sure this is what they want (and why, because I am curious) because it occurred to me that the hospital may charge a billion dollars for the spinning, and if it is really necessary to have it spun, I want my referral to include said spinning.
This is all so stupid and is not making me feel any better.
Interestingly, though, I did receive a reply from the Quest Patient Advocate to my email. She apologized for the inconvenience and asked for the phone number of the specific Quest center that I use so that she can call the manager. I don't know if this will change anything, but at least it's something.
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I'm sorry I missed your last post, lainiepop. I've just read it; I missed it because I was actually in the UK at the time!
How are you feeling these days? Has the uti cleared up, and is your creatinine back to normal or is it still all wobbly?
I remember all too well some of the non-tx medical issues you've had. You've always been a fighter, but even fighters feel fear and anxiety, right?
I feel exactly the same as you. Just when you start to let your guard down just an itty bitty bit, something comes along to remind you that no, you have to be on your guard at all times.
Like your doc, mine isn't really concerned, either, but it is our job as tx patients to track what we think may be a trend and to voice our concerns. That's part of the responsibility we bear, and I'm OK with that; I'm sure you are, too.
Again, I feel really bad that I missed your post. I would have replied with some (hopefully) reassuring words because yes, your feelings are all too familiar to me (and to all of us!).
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Don't worry, we all miss posts! i remember u commented on my cervical cancer scare one! The original rise for the creatinine i think was as my tac level was too high. my body has always been sensitive to it it seems. The uti turned out to be not what was making me poorly, it was the same uti that i have had for 2 yrs and never got ill from (if u remember my bladder is defferent as made from bowel so always got bugs in it. thankfully theyve decided ton stop giving me antibiotics as they were making my immune system bad and i cauhght cold after cold! My last blood test was only 3 weeks ago so i will get it drawn tomorrow.
Where were u in the uk? we are going to berlin for a few days before christmas this yr and then planning on our west coast trip in summer 2018 but know am worried it wont happen :( I feel fine, just tired from work and running kids round everywhere lol. but normal tire. i am anaemic too. struggled with that since tx due to heavy periods that are no longer irregular but come a few days early every month. oh joy!!!
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Moosemom: Just wanted to say that I hope you and your bean (kidney) are alright and that you get good news soon. :)
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Lainiepop, I was in London. If you remember, I lived there for almost 20 years. My son still lives there, so I was visiting friends and family.
My tac level is within the range they want, but you never know; maybe my body has become more sensitive to it over time. I do remember your bladder situation. I'm glad they've stopped the antibiotics as they do seem rather pointless in your particular situation.
I hope you get to go on your West Coast trip next summer. Are you afraid that the fates will conspire against you and your numbers will go all wobbly again just as you are getting ready to depart?
Cattlekid, I've just had an email from my coordinator, and she said that the spinning was requested by the lab and is "something new". She didn't know the reasoning behind it, but said that it has to be done. So, there's another hoop we have to jump through. I had asked Quest if they could spin down a sample, and they said they could but that it would take about an hour, so it would be a case of having the blood drawn and then waiting around before it was ready to mail back to UW. Doesn't that sound fun?
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Moosemom: Just wanted to say that I hope you and your bean (kidney) are alright and that you get good news soon. :)
Thank you, PT! I'm hoping for the same! :thumbup;
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Hi MooseMom,
Hope your results come back ok and it's just a fluke. Very good idea to test for those pesky viruses, and best wishes that you don't have to deal with one of them.
Jenna has her blood drawn at dialysis now, but occasionally we will get a lab box and the phlebotomist at our family doctor will do the blood draw at no charge.
I am glad to hear you were able to visit your son in London. Best wishes to you! :cuddle;
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If you get a resolution from Quest, please let me know. I got the same response from my Quest center when I tried to request they do the outside draw so I am wondering if this is something that was handed down regionally?
I've never had to have my HLA tests for UW spun, it's always just draw, package and ship.
I know! I looked back through my records, and I have DSA orders from previous years that specifically say NOT to spin down the sample, so I don't know why this sample needs to be spun. I have just emailed my coordinator to make sure this is what they want (and why, because I am curious) because it occurred to me that the hospital may charge a billion dollars for the spinning, and if it is really necessary to have it spun, I want my referral to include said spinning.
This is all so stupid and is not making me feel any better.
Interestingly, though, I did receive a reply from the Quest Patient Advocate to my email. She apologized for the inconvenience and asked for the phone number of the specific Quest center that I use so that she can call the manager. I don't know if this will change anything, but at least it's something.
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Hi MooseMom,
Hope your results come back ok and it's just a fluke. Very good idea to test for those pesky viruses, and best wishes that you don't have to deal with one of them.
Jenna has her blood drawn at dialysis now, but occasionally we will get a lab box and the phlebotomist at our family doctor will do the blood draw at no charge.
I am glad to hear you were able to visit your son in London. Best wishes to you! :cuddle;
I often think of you and Jenna. How is she doing? :cuddle;
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Cattlekid, it just so happens that I DID get a response from a Katie LaBrose who looks to be the Patient Service Supervisor in this area, and she writes,
"I am sorry to say that this was a corporate decision and we no longer offer this service or allow our phlebs to draw the extra tubes to be sent to your transplant lab in Wisconsin. I do apologize about this and do understand it is an inconvenience for you. If there was anything I could do to get this done I would, I truly apologize about this inconvenience."
So, there you have it.
I did forward this email to my coordinator because when I first told her about this, I got the feeling she didn't really believe me. But I know they get a lot of patients from Chicagoland, from my own local neph, actually, so Madison needs to be aware of this extra hoop we all have to jump through.
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Clinics have no problem teaching home hemo patients to insert 15 gauge needles, both blunts and sharps. It should (emphasis should, not is) be possible to train many transplant candidates to do their own blood draws using the tiny (25ga or so) needles.
When I was having twice weekly platelet testing to see when I would be ready for hip surgery, I got a puzzled reaction when I brought in my own tubes already filled to the hospital (the exact opposite of what you are trying to do). I was tempted to tell them I got a home phelebotomy kit on Amazon.com.
You might want to see if you can get you local newspaper to do a story about how the Quest is failing to serve the community.
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You might want to see if you can get you local newspaper to do a story about how the Quest is failing to serve the community.
I support some coverage.
But I see it as more a failure of the transplant industry to make sure their patients/clients have easy access to fulfill the medical requirements of the transplant process. No one told me the boxes where coming and the first time I got one I went to the transplant center to get it filled and they told me they don't do that after waiting forever they told me where I could get it done at a hospital lab offsite, and even that was a pain to get them to understand what needs to happen. My vials go to John Hopkins but I'm listed at INOVA Fairfax and think that is INOVA's responsibility to make this process easy and cheap, and setup in a way so insurance will pay for the blood draw.
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Iolaire, I'm sorry your transplant center didn't give you more information when you needed it. There is no excuse for that.
To be fair, though, to my own transplant center, this is not their fault. This "corporate decision" by Quest was news to them. This is entirely Quest's fault. I've been to 3 separate Quest facilities in my area over the past decades, so they pretty much have a monopoly around here. In all of my pre-dialysis years and throughout my testing to get on the tx list, this is the first time I've encountered a problem with access to services. My tx bods have been great. They have always been eager to work with me and to require as little of me as possible.
If my labs come back ok and show that my creatinine is no longer rising, then that will be the end of it. If my creatinine shows yet another rise, then I'll go to Madison for a biopsy, and they'll do a DSA at that time. So, that solves the problem for now. They don't think it is a rejection episode, so they are not pushing for this test to be now, especially as it would take too long to get the referral in the first place.
SimonDog, I may well do as you suggest and contact my local paper. Thanks for the idea!
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I am back on the list at my own UW (University of Washington). They sent me a big envelope with copies of orders for my monthly blood draw with my dr's name on it. I can take that to any lab for them to draw. I can also get it done at UWMC lab and they take care of all the after work for me. So does my local hospital, which is in a different hospital network than UWMC. So far I think my insurance is being billed for the draws at my local hospital. (this is for maintaining status on the list, not for post-tx labs).
KarenInWA
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Thanks for the update. This makes me thankful that at least for now, Edward Hospital Central Lab will still do the courtesy draws. I will have to call them and see about the spinning though so I am prepared for next spring when I will have to do another HLA test for my yearly update.
Cattlekid, it just so happens that I DID get a response from a Katie LaBrose who looks to be the Patient Service Supervisor in this area, and she writes,
"I am sorry to say that this was a corporate decision and we no longer offer this service or allow our phlebs to draw the extra tubes to be sent to your transplant lab in Wisconsin. I do apologize about this and do understand it is an inconvenience for you. If there was anything I could do to get this done I would, I truly apologize about this inconvenience."
So, there you have it.
I did forward this email to my coordinator because when I first told her about this, I got the feeling she didn't really believe me. But I know they get a lot of patients from Chicagoland, from my own local neph, actually, so Madison needs to be aware of this extra hoop we all have to jump through.
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I am back on the list at my own UW (University of Washington). They sent me a big envelope with copies of orders for my monthly blood draw with my dr's name on it. I can take that to any lab for them to draw. I can also get it done at UWMC lab and they take care of all the after work for me. So does my local hospital, which is in a different hospital network than UWMC. So far I think my insurance is being billed for the draws at my local hospital. (this is for maintaining status on the list, not for post-tx labs).
KarenInWA
How are you doing, by the way? Are you pretty stable?
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I do my draws as part of home hemo, but the Fresenius clinic I used is kind enough to provide mailing supplies including "Bill sender" UPS labels pre-printed with the FMC UPS account. I keep a PDF of the order on my computer and print out a new copy each month.
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How are you doing, by the way? Are you pretty stable?
MooseMom - yes, I am stable, which I am so thankful for! I just had labs done on Halloween and saw my regular neph earlier this month. My creatinine and BUN are my normal high, and all other #'s are normal (except for GFR, which is low - 17 on these last labs). So, even tho Lynette the kidney isn't keeping the kidney #'s normal, she does an excellent job on the K, phos, Calcium, hgb/hct, etc. And, 5 years out and still have normal Blood sugar!!!! I'm loving that!
KarenInWA
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Karen, I am so glad to hear that Lynette is still chugging away. Everytime I see the Seahawks on TV (which is very often), I think of you! :thumbup;
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How r u doing moosemom? I had my bloods done yesterday so stressing on results wait. Got a 24hr blood pressure monitor on now as my bp is always high at clinic. At home it is not so tury want me to do this. Wont get much sleep with it buzzing every hour!
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How r u doing moosemom? I had my bloods done yesterday so stressing on results wait. Got a 24hr blood pressure monitor on now as my bp is always high at clinic. At home it is not so tury want me to do this. Wont get much sleep with it buzzing every hour!
Well, see, that's just it. I feel just fine. I have no symptoms of anything to speak up. That's why I'm dazed and confused. No one seems to know why my creatinine is going up, but I'm having labs on Tuesday which will include tests for the usual viruses. So, we'll see.
I'm feelin' your stress! It's awful waiting for results. Let me know what they say, OK? I'm hoping you have nothing but good news. Try to get some good sleep despite the bp monitor. :cuddle;
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Well I didn't sleep at all. woke up every hour the monitor went off!! Steve is taking the kids out in a bit for andrews guitar lesson and them taking them to mcdonald's so i can have a peaceful morning. then we will have a takeaway and movie night and early sleep!!
Good luck on your labs. i guess i will know mine by then. I plan on calling before the tx nurse is in on monday morn and leaving a message saying i had bloods drawn thurs so tac level should be back today, so if they can let me know if anything needs changing and then hope they dont call haha!!!
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Moosemum, I have no experience with Tx but do have plenty of experience in feeling what you're feeling right now while waiting for test results. I hope all this all blows over soon & it will be just some random, unexplained temporary change in your creatinine levels. The fact that you feel fine is a very good sign. Hoping to hear some good news.
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Moosemum, I have no experience with Tx but do have plenty of experience in feeling what you're feeling right now while waiting for test results. I hope all this all blows over soon & it will be just some random, unexplained temporary change in your creatinine levels. The fact that you feel fine is a very good sign. Hoping to hear some good news.
Thank you, Athena. It IS awful waiting for results, right? You know that feeling of anxiety that gnaws at your gut, especially when you have absolutely no clue as to what those results might be. I'm sorry you've ever had to feel that anxiety. I'm sorry that all of us have had to feel that stomach roiling.
Yes, I'm glad that I feel well, but that just adds to they mystery of it, you know? Along with being anxious, I'm also just downright curious! I asked my coordinator if, given what we know at the moment, she had any gut feeling as to what's going on, and she said that she really didn't know. But once I find out, I'll post about it. Maybe this experience will help someone else down the road.
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Well I didn't sleep at all. woke up every hour the monitor went off!! Steve is taking the kids out in a bit for andrews guitar lesson and them taking them to mcdonald's so i can have a peaceful morning. then we will have a takeaway and movie night and early sleep!!
Good luck on your labs. i guess i will know mine by then. I plan on calling before the tx nurse is in on monday morn and leaving a message saying i had bloods drawn thurs so tac level should be back today, so if they can let me know if anything needs changing and then hope they dont call haha!!!
You know, when you are sleep deprived, everything looks so much bleaker. The fatigue wears away what optimism you may have felt the night before. It is on days like this when takeaways are a blessing. What will you be ordering? Curry? Chinese? And which moving are you thinking about watching?
I know exactly how you feel about NOT wanting that phone call! LOL!
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Thinking of you MM, keep feeling well, positive vibes have been sent to you
:grouphug; :cuddle;
Love, luck and strength, Cas
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Oh, thanks Cas. I appreciate it. You're very kind.
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ok, update. I'll try to keep it short.
I take my bp in the mornings after I've eaten and have been up for a while. I don't take my bp at any other time of day.
I've been really pushing fluids to get my creatinine down.
I've been very anxious over the past days as I am sure you all can imagine.
Yesterday we went to see Dr. Strange, and all throughout the movie and throughout the rest of the day, my left upper arm hurt. It felt like certain big blood vessels were tightening. This is the upper arm in which my ligated fistula resides.
As I went to bed to read, my arm still hurt, so out of curiosity, I took my bp, and thank goodness I did. It was WAAAAY higher than any numbers I have EVER had...EVER. It was around 170/100!!! Of course these things happen on a Saturday night when there's no one to turn to, so I went straight to the ER.
They were able to see me right away, and I explained that I'd been stable for years but that recently I'd seen rising creatinine and lowering egfr, that I was due for labs on 11/22 to try to get to the bottom of it, and that in the meantime I had been pushing fluids and trying to cope with tremendous anxiety
They gave me a low dose of Procardia in pill form and an IV with Ativan and fluids to bring down my bp, to calm me and to make me pee respectively.
They took a blood and urine sample.
Bottom line is that my creatinine showed a decrease from 1.48 to 1.3. GFR improved from 38 to 45.
No protein in urine.
Everything else fine. No sign of uti.
They didn't do a tac trough nor tests for BKV, etc, as they are not set up to do those tests on an emergency basis. Fair enough.
Back in May, my tx neph had taken me off amlodipine but kept me on atenolol as my numbers looked so good! Looks like I might need the amlodipine after all.
Perhaps my bp was getting higher at night without me realizing it?
I've emailed all of this info to my tx coordinator, but she probably won't see it until tomorrow (Monday).
The ER doc did manage to speak with my TX neph who was relieved things were better. I was surprised he was able to reach her in the middle of the night as she is rather the top dog.
So, I suppose the consensus is that elevated bp was the culprit and that while pushing fluids certainly helped improve my numbers, bp is probably the underlying issue.
Hopefully, that's the end of this story.
Should I begin taking my bp at night, too? What do you all do?
Thanks for all of your help and support.
If you have any thoughts, I'd love to hear them.
:grouphug;
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Should I begin taking my bp at night, too? What do you all do?
I take it every day around 5pm when I begin to think about setting up my PD cycler. I take 2 BP meds: amlodipine and a small (almost irrelevant) amount of hydralazine (I react poorly to most BP meds). I take both in the morning. My neph suggested I take my BP also in the morning to see if the hydralazine is actually doing anything.
Glad to hear there's a light at the end of your tunnel. Keep it up.
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Hello MooseMom and thank goodness your elevated bp is hopefully the only culprit and hopefully there is nothing else to be worried about...!!!
... You certainly had me worried about your health and your well-being !!!
... To answer your question about bp medication and when or how to take it:
... I take my first bp-medication at 8.30 every morning and then the second one at 22.30 pm and to make absolutely sure I won't forget, my watch is set with little noisy reminders for these particular times ... and in case I am not at home at any of these times, I always have my reserve-bp-medication in my handbag and regularly check-up about the dates of these reserve-bp-packages to make sure they won't run out of their "sell-by" date, because the reserve "handbag-ones" don't have to be used often ...
My reasoning for these particular times came as a result of my own research by taking my bp during several days and figuring out the times when I needed to take my bp-medication.
For example, in the mornings I am a bit on the sleepy side and by taking my first bp-medication at 8.30 gives my body a chance to be really nicely under bp-medication by the time my bp would rise ... Furthermore, the 8.30-bp-medication keeps my bp nicely controlled during the whole day and the second bp-medication at 22.30 keeps my bp further controlled until next afternoon when it is time for the 8.30 am bp-medication to really "kick in".These times came about after taking my bp regularly and observing my own bp-medication-needs ...
The reason for me taking two bp-medications every day is because each dosis is very small (almost minute) but by taking two "small ones" every day it keeps my bp much better controlled...
... I do hope all this does not sound too complicated, but once you have checked-up your bp-medication-times and your own precise bp-medication-needs, it all becomes routine...
I wish you good luck with it all and please take great care of yourself and best wishes from Kristina. :grouphug;
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Thanks, Kristina and k&s. I'll see what my coordinator has to say.
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Great news MM, pleased to read that. You must be so relieved.
When I had dad's kidney I'm pretty sure I took 1 dose of Amlodipine in the morning and 1 dose of Irbesartan before bed. I also had Lisinopril at some point.
So basically what Christine does. BP 2x a day after I'd had time to sit for a few minutes.
I was always taught that BP is best to be stable through the Day, so I'd think after taking your BP 4 times for a few days, you'll know what time of day your BP is raised, so maybe you could than work out the best times for you to take the BP meds.
Love, luck and strength, Cas
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I have learned I have to take my lisinopril in the evenings. If I take it in the mornings then the med combined with the heat of the day during warmer weather I get those dizziness spells rising after bending over to pick up sticks in the yard. Taking the med evenings that doesn't happen.
I have to think the major amount wears off before the heat of the day rises too much. Whatever. Nurse made the suggestion to shift what time I tooki it and it is working, so I will keep on that schedule until I'm told different.
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Hi MooseMom so pleased to see your news! Well when i got back from work today there was a message from tx nurse saying all is fine. Tac level 6.2 and creatinine 84. So all stable. They were never worried but u know i do. Just thankful it did not rise again i was so anxious and sure it would last night! So maybe i need to stop worrying. Can look forward to christmas now no clinic til january although guess will get a call if my bp test showed high readings. But not bothered about that too much! Xxx
sp mod Cas
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Hi Moose mom so pleased to see your news! Well when i got back from work today there was a message crom tx nurse saying all is cine tac level 6.2 and creatinine 84. So all stable. They were never worried but u know i do. Just thankful it did not rise again i was so anxious and sure it would last night! So maybe i need to stop worrying. Can look forward to christmas now no clinic til january although guess will get a call if my bp test showed high readings. But not bothered about that too much! Xxx
This Thursday is Thanksgiving Day here in the US. Maybe you and I can take a moment to think of each other and to be grateful that both of us are stable for the moment. And maybe we can both try to find a way to better cope with our fears that are always there, just under the surface.
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Will do. Keep us all updated with everything. Do u use facebook? Xx
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(Lainiepop, I do use FB but not often.)
I have one last question. I'm going to see my PCP on Tuesday, but in the meantime, I'm wondering if any of you might have some thoughts about this one issue...
I take my bp now several times a day, and it is fine.
However, I am feeling several kinds of discomfort in my now ligated fistula. It feels like some of the blood vessels in my upper arm got all bruised or tight or injured when my bp went so high (which I'm now suspecting was due to extreme anxiety). It feels like it did before it was ligated 2 years ago, all sore and "pinched" in places. My arm feels OK when I wake up, but as the day goes on, it gets sore.
Is it possible for blood vessels to be injured during a "hypertension episode" (I don't know what else to call it.)? Do you think this will go away on its own, or do you think a vascular surgeon might need to see it? Any thoughts?
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To be honest, I would have it looked at, at least have an Ultra sound scan if poss.
Love, Cas
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Cas, I'm pretty sure that's what my PCP will say. But does this make sense? Can an episode of high bp (as opposed to chronic hypertension) damage the blood vessels in a ligated A/V fistula?
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MM, I actually think it could, it sounds logical that extra pressure (the hypertension) on a weak spot in veins which are compromised in some way like a fistula or a ligated fistula, would cause at least some bruising (little burst vessels) If the Hypertension period would last a longer time I could imagine 'growing' collateral veins too.
Just my thoughts though. So wouldn't it be interesting to find out if that really is the case? So if you happen to be bored out of your brain, and fancy a visit to hosp, and waiting around for probably hours, we would all find out ;D
But to be serious, if the pain is not subsiding tomorrow, I would have it checked out. If the pain is subsiding I would ask on Tuesday.
Any change yet?
Love, Cas
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I'd be curious to see if there is any measurable swelling, a difference between say morning and night, or 'no pain' and again once in pain. se a string or measuring tape in a couple of areas. I would have to write down the measurements as I can't remember spit.
If nothing else it may provide more information for the Dr's.
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MM, Carl had his fistula tied off because it was so huge, it posed a health risk. Then he got an aneurysm above the old fistula. He had to have the whole vein in his upper arm replaced.
I hope yours will be an easier fix, but DO get it looked into. :cuddle; :cuddle;
Aleta
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Charlie, I am keeping notes on when the discomfort is at its worst. I'll consider measuring although frankly I cannot see any enlargement. Believe me, I've been looking!!
WTW, how did Carl know he had an aneurysm? Did he feel something? Did he see something?
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Hi Moosemom, Sorry to hear that. All will work out for you,
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Wat76!!!! It's really good to "see" you again!!!
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Hi Just a quick update, I am doing well and still doing PD. I had gotten totally overwhelmed and had to withdraw from the forum. Then I forgot my password to log into the web site. So far I am hanging in there and I have been traveling a lot. I retired from the government last December and hubby and I are just enjoying life. I truly missed this forum and I am so glad to catch up. Will give a general Intro again since I have been off for so long. I continued to keep everyone in my prayers even though I was not logged in. Well hope you are enjoying the holidays.
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I had my latest lab results today, and my creatinine has remained at 1.35. No worse but no better.
My bp is now and has been practically perfect in every way since I last posted.
The bottom line seems to be that after being stable at 1.1 to 1.2 for some time, I now seem to be stable at a new normal, that being between 1.3 and 1.4. Does this sort of story sound familiar to any of you? Does any one have any ideas on why there would be a sudden uptick in creatinine, an "uptick" that becomes a "new normal".
My coordinator isn't bothered; she still describes my numbers as "excellent" and reminded me of how many patients she has that would love to have a creatinine of 1.35. I guess it is good to have some perspective.
Still, I'm curious. Thanks for any thoughts/theories.
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Sorry for the late reply MM. Carl knew he had an aneurysm because he is very thin and he could see the blood vessel bulging under his skin around the elbow area just above where his fistula had been tied off.
He is 6 years post TX, now. All is going fairly well for him.
Aleta
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Thanks for that, wtw!
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The thing to watch is the trend.
In my pre-D days I heard the same thing "Tiny uptick from last visit, not significant, nothing to worry about at this time." But, when plotted as a graph the trend was undeniable, so I biopsy and started making longer term plans.
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Thanks for that, Simon Dog. Yes, I remember those pre-d days and having to watch for trends which were inevitably downward!
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Hi Moose m0m how r things now? I realised i commented on this thread before when i was having issues and am having some again! My tac level has been low again so they upped it at clinic (creatinine 87) after upping 2 weeks later tac level still too low creatinine 90 and so upped again had another blood test a few days ago now need to call tomorrow for results am dreading something being wrong u know how i worry. Xxx
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Hi Moose m0m how r things now? I realised i commented on this thread before when i was having issues and am having some again! My tac level has been low again so they upped it at clinic (creatinine 87) after upping 2 weeks later tac level still too low creatinine 90 and so upped again had another blood test a few days ago now need to call tomorrow for results am dreading something being wrong u know how i worry. Xxx
Well, that's really odd (or, maybe it isn't). I don't know why your tac level would suddenly be too low; you'd think it would be pretty stable this far out from tx. I mean, it's been since 2012, right? But then again, I guess this is why they check it so often! Does your tx team have any explanations? Interesting how our tx teams don't seem concerned whereas you and I are always worried! I guess maybe they have a wider perspective than we do.
I'd love to just tell you, "Oh, don't worry", but that would make me a hypocrite because I know I'd be worried just as much as you are! I'll be thinking of you tomorrow, so please let me know your results, OK? (But only if you feel like it and have the chance to post). Oh, I can feel the dread crossing the Atlantic. Urp. Gives me a jippy tummy just thinking about it, ya know?
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Thanks moosemom. Reading my last post on this thread when they upped it before christmas it was 6.2. At clinic a few wjs ago it was 3.9! So upped by 0.5mg and bloods showed gone to 4.5 but they want it above 5 so another .5 was added. Havebeen taking 3mg twice a day now. They don't kniw wht it changes. I remember them once saying it depends how well your liver works so the better it wirks the faster it metabolizes the drugs? Guess my liver is working really well, at least ine part if me does 😂😂. We didn't end up going to Berlin in theend at christmas (thankfully seeing as they had the terror attack at a market we planned to go to!) flight cancelled due to severe fig, managed to get all our money back so stayed in london with steve's parents instead and went to see Frozen on ice and charlie and the chocolate factory. Hope u had anice christmas xx
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I hope your latest labs were OK, lainiepop. :pray;
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Ho Moosemom yes thanks they were. Tac now 6.7 so gone up a lot but creatinine stable 88 😃. No nore labs or appointment s til april so 2 months of not stressing lol. Oh i di have an ultrasound of bladder on Tuesday so hoping nothing abnormal on that!
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Forgive me for returning to this topic, but something has come up and I'd appreciate your opinions/thoughts.
I've just had the results in from my annual set of labs which, as you know, is much more comprehensive than the usual monthly labs.
My creatinine is still elevated (for me) at 1.41. What I haven't told you is that last month, my creatinine when down to the more normal-ish 1.24 (keeping in mind that my usual creatinine has been below 1.2 on average for several years now).
So, since August of last year, my creatinine has been from 1.3 at it's lowest to 1.48 at its highest with last month's apparent anomaly at 1.24.
After last month's 1.24, I was hoping that things would settle back down, but today's 1.41 has rather dashed that hope.
There has been no "trend" over the last 9 months since July. There has been a spike, though.
My tx team hasn't expressed any particular worry.
To be fair, my numbers are within the "normal" range for what my team has set out for me. But it does seem that my numbers have gone from spectacular to merely "good". I know I should be thankful for "good", but I'm sure you can understand my anxiety.
Here's the thing. The rest of my three pages of lab results are all normal. Cholesterol, glucose, phos, potassium, wbc, hematocrit, calcium, PTH, Vit D, hepatic panel are all normal. Urinalysis is normal; I'm not spilling protein.
I don't have BKV, either.
I have my annual post tx appointment next week, so I will be discussing these results with my neph, of course.
I look after myself, keep myself hydrated and take my meds religiously. I feel just fine. I can live a good life.
So, my question is this. If all of these other numbers are good, and if I have a good quality of life, what does a suddenly and persistently higher creatinine really mean to a patient like me? I feel dazed and confused, not to mention anxious and disappointed, but in the grand scheme of things, are these feelings unfounded?
What do you all think? What have your own post-tx experiences taught you in situations like this?
Thank you so much in advance for any thoughts you share with me. I appreciate it.
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I decided awhile back to take my cues from my transplant team. I know that anything of real concern will get me a phone call from them. I haven't had creatinine spikes but I've had some other labs kicked out and find that too much web research usually just winds me up. I try to focus on controlling every transplant patient's best friend, high anxiety. I've always been a worrier, which is a bad personality type for life in general, let alone for a transplant recipient. Since I'm almost always working from an information deficit I try to follow the good health rules, which I know you do, and push bad thoughts out of my mind as best I can. You fended off kidney failure for many years so it seems that for you these creatinine spikes may not mean much. You have resilience and I choose to believe this is just one of those blips that will come to be of no importance in the long view. Let us know how your clinic visit goes. I'll be thinking of you.
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I decided awhile back to take my cues from my transplant team. I know that anything of real concern will get me a phone call from them. I haven't had creatinine spikes but I've had some other labs kicked out and find that too much web research usually just winds me up. I try to focus on controlling every transplant patient's best friend, high anxiety. I've always been a worrier, which is a bad personality type for life in general, let alone for a transplant recipient. Since I'm almost always working from an information deficit I try to follow the good health rules, which I know you do, and push bad thoughts out of my mind as best I can. You fended off kidney failure for many years so it seems that for you these creatinine spikes may not mean much. You have resilience and I choose to believe this is just one of those blips that will come to be of no importance in the long view. Let us know how your clinic visit goes. I'll be thinking of you.
Yes, of course you are right. Thank you. I am SO grateful for your response.
My brain agrees that if my tx team hasn't called, then they are not concerned, so I should not, either. My brain agrees that working from "an information deficit" (what a good way to put it!) means that I can only do my best, which is to follow all of the rules. And my brain agrees that controlling "every tx patient's best friend, high anxiety" (well put, again!) is probably one of the most important "rules", just as important as taking your meds.
So, I will just work harder to push away the negative thoughts and the anxiety-inducing fears and will wait to see what happens in my clinic visit. I thought that at 5 years out, I was a "veteran", but clearly I am wrong. There are still many possible blips that can occur.
Again, thank you so much for your reply.
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Also keep in mind that everyone is different...and everyone metabolizes the meds differently...at different times of the month. even My daughter being a long time heart transplant...we found out that most "issues" self resolve, or meds are changed to better the outcome....WHEN the transplant team is worried.
If they aren't ...you should be good. :)
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Also keep in mind that everyone is different...and everyone metabolizes the meds differently...at different times of the month. even My daughter being a long time heart transplant...we found out that most "issues" self resolve, or meds are changed to better the outcome....WHEN the transplant team is worried.
If they aren't ...you should be good. :)
Thank you for that, Xplantdad. I've been taking the same meds at the same dosage for pretty much the last 4 years, so I suppose it is possible that maybe a dosage change may be the "answer". I suppose it is unreasonable to expect my numbers to remain really really good forever. I've no doubt that you and your daughter are pros at this sort of thing!
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Dear MM it's a looooong time ago that I was where you were, and I agree with both Xplantdad and SooMK. Maybe you just sweated a bit mote that day or just drank less. You're doing incredibly good.
You'll be fine my love, but I understand your anxiety.
Lots of love, Cas
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Thank you, Cass. That's kind of you. :cuddle;
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Just wanted to chime in and say hang in there. My dad often had creatinines of 1.8 and above with his xplant, and it worked beautifully for 16 years.
Stay strong and keep taking excellent care of yourself.
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Just wanted to chime in and say hang in there. My dad often had creatinines of 1.8 and above with his xplant, and it worked beautifully for 16 years.
Stay strong and keep taking excellent care of yourself.
Wow! I'll take some inspiration and encouragement from your dad! Thanks for chiming in with that story.
I think I'm just being self-indulgent, and I apologize. I have no right to feel this way. I recognize that I have been fortunate, and I will continue to work hard to maintain my new kidney and to just be grateful. I am also very lucky to be a part of a community that is so ready to give support at the slightest sign of whining. I will work hard to be more optimistic and to focus more on what I have than on what I have incorrectly perceived that I have somehow lost.
Thank you.
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You are doing great, MM. And there's nothing wrong with focusing on your health -- you have every right to feel however you feel. Like, I'm on in-center D and I'm hyperprotective of my fistula and I often worry the staff there think I'm a crazy person, but I'm the one who has to live in this body.
But I am finding, like xplantdad said, that every body is different. And that's helping me relax a bit when I tie myself up in knots over my labs.
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My daughter being a long time heart transplant
Sorry to go off topic here but do the two transplants end up having the same anti rejection plans/meds or do the two treatments not build on each other?
Overall its refreshing to see so many people say trust the transplant team. (As compared to the mixed feedback people give on their nephrologists.)
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My daughter being a long time heart transplant
Sorry to go off topic here but do the two transplants end up having the same anti rejection plans/meds or do the two treatments not build on each other?
Overall its refreshing to see so many people say trust the transplant team. (As compared to the mixed feedback people give on their nephrologists.)
I've wondered the same thing about Xplantdad's daughter's meds, too!
You've raised an interesting point. While I always did trust my neph, I trust my tx team even more. Perhaps it is because generic nephs see all sorts of people with all sorts of renal diseases at all sorts of stages. Transplant teams seem to have more specific expertise, which is logical. Also, at least at my center, all of the coordinators work together, and if one does not know the answer to a question, they have lots of other people which whom they can consult. It really is a transplant TEAM. Also, again at least at my center, it is easy to contact my coordinator. There is a more personal touch.
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You are doing great, MM. And there's nothing wrong with focusing on your health -- you have every right to feel however you feel. Like, I'm on in-center D and I'm hyperprotective of my fistula and I often worry the staff there think I'm a crazy person, but I'm the one who has to live in this body.
But I am finding, like xplantdad said, that every body is different. And that's helping me relax a bit when I tie myself up in knots over my labs.
Thank you. I really appreciate this. I was hyperprotective of my fistula, too. You have to be.
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My daughter being a long time heart transplant
Sorry to go off topic here but do the two transplants end up having the same anti rejection plans/meds or do the two treatments not build on each other?
Overall its refreshing to see so many people say trust the transplant team. (As compared to the mixed feedback people give on their nephrologists.)
I've wondered the same thing about Xplantdad's daughter's meds, too!
You've raised an interesting point. While I always did trust my neph, I trust my tx team even more. Perhaps it is because generic nephs see all sorts of people with all sorts of renal diseases at all sorts of stages. Transplant teams seem to have more specific expertise, which is logical. Also, at least at my center, all of the coordinators work together, and if one does not know the answer to a question, they have lots of other people which whom they can consult. It really is a transplant TEAM. Also, again at least at my center, it is easy to contact my coordinator. There is a more personal touch.
I am happy to answer this...as we had the same questions before our daughters kidney transplant.
With only the heart transplant, Holly was on Tacrolimus 1.0 in the morning and .5 in the evening and sirolimus .5 once a day and a few other meds to control blood pressure, phosphorus, etc due to decreased kidney function.
After the kidney transplant (and after the kidney settled into it's routine)...Holly was on Tacrolimus .5 in the am and .5 in the PM (Yes, you read that right...less of the Tacrolimus). I guess we can attribute the decrease to a better functioning kidney and metabolism!
They also had her on Myfortic 1.0 once a day (Myfortic is the apparent "go to" secondary immunosuppressant med after kidney transplant). We let the transplant team know that they had tried to switch Holly to that med a few years ago and she didn't tolerate it well. They assured us that there was a new formula out-and that they'd keep an eye on it. What ended up happening is that the Myfortic caused Holly's white cell count to plummet do dangerous levels rather quickly....So they had to give Holly injections of a med that I don't remember offhand to bring it back up . She had 3 injections.
In the mean time we talked to the senior transplant doc (Who just so happens to be one of the world's authorities on immunosuppression and is one of our docs at Mayo)...and he said that he consulted with the heart transplant team at Mayo and got them on the same page and switched Holly's secondary medication to Everolimus-and no more issues (Everolimus is a BETTER and safer version of Sirolimus).
Ask away if you have any more questions :)
Oh, by the way, Holly's 4 month biopsy cam back stellar....docs are very happy!! :bandance;
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@Xplantdad thank you for the reply
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Yes, thanks for that! That was interesting.
You're right; myfortic is the usual "secondary" immunosuppressant. About 2 months after my tx, I, too, had a plummet in the count of one particular type of white blood cell (can't remember which one and am too lazy to go find out). I was given two injections of neupogen, and that did the trick. No problems since.
Oh...it was absolute neutrophils that I suddenly had only a few of. I remember now.
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That's it...they classified her as having neutropenia! Thanks for the 'mind slap' :) :Kit n Stik;
They pulled her off of the Myfortic right away and she only used the Tacrolimus for about a week. She had 3 injections of the Neupogen, too.
Once her count came back up, they put her on the Everolimus and all is well!
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That's it...they classified her as having neutropenia! Thanks for the 'mind slap' :) :Kit n Stik;
They pulled her off of the Myfortic right away and she only used the Tacrolimus for about a week. She had 3 injections of the Neupogen, too.
Once her count came back up, they put her on the Everolimus and all is well!
Yep, they took me off of the Myfortic, too, for about a week. That particular med seems to be the culprit. In my case, though, after the injections brought my count back up (sure didn't take long!), I was put back on Myfortic as before, and almost 5 years later, I've had no more occurrences of neutropenia. And you know what? Having neutropenia in the few months after tx is not uncommon in patients taking Myfortic. I did not know that at the time.
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Hey MM, they told us that, too. The one thing that our doctor said was that for the long term, Everolimus is way better for the heart, too!
Here's one of the studies that Dr. Bruce Kaplan did: http://journals.lww.com/co-transplantation/Abstract/2002/12000/Everolimus_in_renal_transplantation.10.aspx
Also more about our doctor, Bruce Kaplan: https://www.myast.org/bruce-kaplan-md
:thx;
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Hi moosemom i know how u feel as i am having issues again too! Hospital padt week showed creatinine up to 97, doc not concerned as eveything else normal (like you) and last time was 91. Ultrasound a couple months ago showed all fine. I pointed out it has been climbing noticeably since i have been on more tacro. Currently on 3mg twice a day which is higher than ever but tac level is normal. Doc said i am right there is a slight climb will see me in 2 months and if still creeping will taolk about taking me off tacro and putting me on prednisolone along with my a azathioprine. They have mentioned to me before that as i am fairly young (35 now) my liver function shows very good so absorbs/metabolizes the tacro quicker than an older sluggish liver, hence the need for more tacro to keep the level stable. (not good as tacro is toxic to kidney so the less the better).This explains why after half a glass wine i am drunk then lol. But seriously i feel fine have been drinking lots (water!) and weeing lots and i was very poorly the day before i went for my bloodtest and not right that day eitherso he said that could affect things but i feel like i am kind of clutching at straws and even though they are not worried i feel like i have this hanging over me and scared is all coming crashing down. I will be 5 yrs post tx in 2 weeks. When r ypur next bloods MM? xxx
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Lainiepop, you and I just have to get a grip!!! We are both doing just fine, yet here we are all anxious and wary. I'll be at 5 years in late June, so, like you, if our teams are happy enough, then perhaps we should show some mercy upon ourselves and allow ourselves to be happy, too. Sometimes that's easier said than done, I realize.
My next labs will be 1st June as we are going on holiday to California later this month.
However, tomorrow is my annual post tx appointment with my transplant nephrologist. As part of my yearly workup, I had blood drawn for the DSA test (Donor Specific antibody), and I don't have the results from that. So, I get to worry about THAT for a little while longer! I've never had a positive dsa result, so I choose to be hopeful. No one has suggested otherwise.
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Lainiepop and MM...worrying is not good for you :)
Listen to what your body is telling you...and relax.
Rejoice and Enjoy the gift you have been given every day. You are both doing great. I wake up every day and offer up thanks to God for another day with my daughter :pray;. Everything else is irrelevant! :grouphug;
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MM...worrying is not good for you :)
Listen to what your body is telling you...and relax.
Rejoice and Enjoy the gift you have been given every day. You are...doing great.
Weeeeelllllll...not so fast, there.
So, I went for my annual appointment. And, uh, they want me to have a biopsy.
Yep. My doc said, and I quote, "I'm not really WORRIED, but I'm not lovin' these numbers."
No donor specific antibodies were indicated, so that's good, at least.
My kidney is doing what it's supposed to do and is doing its job well, but as I've already explained, my creatinine was steady for a long time at anywhere below 1.2 but spiked back in August to anywhere between 1.3 and 1.48 and has not gone back down. My tx neph wants to know why, and frankly, so do I. I was just hoping (unrealistically) that it wouldn't take a biopsy to find out.
One thing that has been on my husband's bucket list is to go to Disneyland together, and so we are. We've been planning this trip for months. We're leaving next weekend and will be away for 10 days, so that means I have to try really hard not to stew about all of this while I'm whizzing through "It's a Small World". We'll arrive home one night and then leave for Madison the next day for the biopsy. I'm exhausted just thinking about all of the travelling. And we're flying United... ::)
I don't really know what kind of result to prepare myself for. I don't know if they will admit me and start some kind of treatment, or maybe they will give me a one off IV high dose steroid infusion. Or they may just mess with my meds. Or they may find nothing.
If anyone has any insight into any of this, I'd be grateful to hear it. This is my first "crisis", although I'm not sure that's really the right word. It's probably over the top, but it FEELS like a crisis.
All in all, my doc is optimistic (well, she claims to be), but I'm still dazed and confused.
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It's a very small procedure. I stayed in the hospital for about 5 hours, and went home. You will have a local anesthesis. I went to sleep during the procedure. No pain at all.
Make sure to stay in bed for at least one to two hours. So they want to make sure there is no bleeding from the kidney.
It takes about at least one week to get results.
Good luck.
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Right after the local anesthesis in the kidney area, it takes about 15 to 30 min for a radiologist to do the biopsy with the help of ultrasound device.
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Right after the local anesthesis in the kidney area, it takes about 15 to 30 min for a radiologist to do the biopsy with the help of ultrasound device.
Mine was done by the neph, not a radiologist, with cat scan. Wish it was ultrasound (radiation)
I felt the needle when it pierced the capsule enclosing the kidney. My neph told me this was normal since the capsule is innervated but the kidney is not. I don't know if you still have the enclosing capsule after a transplant. I was kept in the hospital overnight to watch for bleeding (standard procedure for this doc). All in all not a bad experience. Had bright red blood in the urine a couple of days later - told this was a normal side effect and not to worry.
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I empathize with your worry, and I hope it's a nothing burger and that you and your husband have a great trip.
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I will be thinking of you, MooseMom. The best advice I can give is to ask your dr to walk you through what he/she is doing, and ask that they count down before the big click. You already know my story, so I won't go into the details. Just remember - my experience was rare!
KarenInWA
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Dear MM after I had it done on dad's kidney, it turned out to be toxicity to Tacro. So change meds. The procedure was okay, like SD and Michelle wrote.
Seriously, no joking here, concentrate on setting it out of your mind!
Go in your head, put all your worries in a small box, close it by stamping on it and throw it in a corner.
Don't waste time on worry cos it won't change nothing at all.
Really enjoy that trip to Disneyland with your husband. :cuddle;
At the minute I'm in P'gal, pretending very hard that everything is fine.
My new mantra: Fake it till you make it. :angel;
Love, luck and strength, Cas
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Anxiety, letting the little things bug us so much it becomes it's own problem.
Talk to your Dr about it. Many people have problems with anxiety, unable to shrug off the fears. Some turn to alcohol, or street drugs, to soften their senses. Medical Pot is the right strain can help for some. The Dr has a whole list of anti-anxiety meds. You may have to try and see what works best for you.
Brothers ex-Mother-in-Law has a couple of cupboard cabinets full of various 'Tea(s). She is a true believer in the healing effect tea can have. I suspect she is correct.
It all keeps coming back to that very old thing, All things in moderation.
Every plant is here for a reason. For us to use. We have simply forgotten what each is to be used for.
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MM...worrying is not good for you :)
Listen to what your body is telling you...and relax.
Rejoice and Enjoy the gift you have been given every day. You are...doing great.
Weeeeelllllll...not so fast, there.
So, I went for my annual appointment. And, uh, they want me to have a biopsy.
All in all, my doc is optimistic (well, she claims to be), but I'm still dazed and confused.
Holly used to have heart caths and biopsies every year. She ended up having side effects from the contrasts (dyes) that they used in the procedures. When Holly got to Mayo they said no more-unless necessary! As far as her kidney...we just had the standard protocol 4 month biopsy and everything is fine. I believe that we have another at 8 months-then one at 2/12 years. Not sure after that, but I think it may be 5 years....or if medically necessary.
I know it may be hard for you, but the worrying part is NOT good for you or your body-it will do nothing but harm-and won't change the outcome.
Celebrate your life-and have a GREAT time at the happiest place on Earth. (As a side note-as a kid I used to lay in my bed and watch the Disneyland fireworks go off :) )
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Most of us here are pretty experienced wait-ers but it never seems to get easier. Hopefully your trip will be a good distraction. Have a great time. I hope this all turns out to be just a small blip. I'll be thinking of you and sending you positive thoughts.
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Had bright red blood in the urine a couple of days later - told this was a normal side effect and not to worry.
Gosh, really? I was told that this would be reason to call the hospital (according to the patient instructions I was able to find on UW-Madison's website for kidney transplant patients)! I'll ask more about this after the biopsy is done and before I leave the hospital. Thanks for the heads up.
Anyway, thank you all for your kind comments. I appreciate it. No one gets through ESRD without some frightening times and long waits. I don't really know enough about rejection in its different forms. One thing I was told that took me aback is that if I needed high-dose steroid treatment, I'd have to sort of go back to square one and go through the usual post tx protocol like the anti-fungal mouth wash, etc. But I'm getting ahead of myself.
Cass, I suppose it could be drug toxicity; that certainly entered my mind.
Charlie, I do have Xanax for use "when needed", and I think that will be sufficient for now. I think I was just in shock, and today I feel better, thanks to the wisdom of my fellow IHDers! And I do love tea and have many varieties at hand, so I will take your advice and have a nice cuppa a bit more often.
Again, thanks to you all, and if anyone else has experience with biopsies, results and treatment you have undergone, I'd appreciate it if you could tell me more about it.
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Hello MooseMom, just to tell you that I think of you and ... I only ever had one kidney-biopsy in 1972 which took place to confirm the diagnosis of Chronic Proliferative Glomerulonephritis. After the biopsy I had to lie still in my hospital-bed for over 24 hours, to let my body and the kidney recover from the biopsy .
I wish you the best of luck and ... I think of you and ... please take great care,
Kristina. :cuddle;
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I'm sorry you are going through this MooseMom. I'm hoping the biopsy goes well and provides the answer. You have done so well and hopefully it is only an issue with the medication that can easily be remedied. The anxiety is something we all struggle with and it never gets easy. Try and set it aside and enjoy your trip. You will be in my thoughts.
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Gosh, really? I was told that this would be reason to call the hospital (according to the patient instructions I was able to find on UW-Madison's website for kidney transplant patients)!
My doc warned me this might happen after the biopsy (oem, not transplant). I called him when it happened and he told me not to worry and call him if it happened again.
needed high-dose steroid treatment
It is not unheard of for xplant recipients to need hip replacements due to steroid induced avascular necrosis. Been there, done that (prednisone was for something else, I have not had any xplants).
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Well moosemom i really hope the biopsy gives u some positive answers please let us know how the procedure went and tue outcome when u have had it. I am thinking of you.
I am trying not to worry we r going away in a xouple weeks to malta for a few days with my parents. We have a 12 day trip to italy booked in the summer and are waiting to book flights for our big to to usa and west coadt vegas grand canyon tour. After last results i did have a cry and worry that this will never happen now but tbh since then been so busy with kids and life (currently wondering how to make medal test costumes for 5 yr olds dancing lol)
So please have a fab time at disney is it california? R u doing harry potter too?xxx
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SimonDog, I do remember you discussing avascular necrosis, and I remember the unpleasant stories.
lainiepop, I've not been to Malta, so when you've returned, you must tell me about your trip. I hope you have fun. It sounds like you have a year of fun travelling ahead of you! And with kids and their projects to keep you busy, there's no time to worry, which is as it should be.
It will be Disneyland in CA. I have been there only once, back when I was around 15 (only a few years ago, haha). I've been to the one in Florida (and even the one in Paris) several times and enjoyed them, but I have relatives in San Diego that we will be visiting, so Disneyland in CA it is!
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Well o just got a follow up letter from my consultant just outlining what he said that if if still creeping next time take me off tacro but there is a misprint on the letter instead of saying creatinine 97 it says 297 :o talk about the wrong place to misprint getting me stressed now!!
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......... is a misprint on the letter instead of saying creatinine 97 it says 297 :o talk about the wrong place to misprint getting me stressed now!!
Seriously
:Kit n Stik;
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Oh Cass, you must have stopped breathing when you saw that number in black and white!
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I guess I have a lot more to Google and learn as I am still so new to all this that there are a lot of Labs that I don't understand yet, much less know what range is good, bad, or indifferent.
I rely a lot on that third column that shows the normal accepted 'Range' of values. As long as my numbers are well within those ranges I don't get the least excited.
So far, I've been Blessed. Well, except for that pTh thing. But we are working on that. Worse case the parathyroids come out. Oh, Well. It won't kill me today, so nothing to worry about.
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I rely a lot on that third column that shows the normal accepted 'Range' of values. As long as my numbers are well within those ranges I don't get the least excited.
So far, I've been Blessed. Well, except for that pTh thing. But we are working on that. Worse case the parathyroids come out. Oh, Well. It won't kill me today, so nothing to worry about.
:2thumbsup;
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How are u doing moosemom? Anytging to report? Well i am feel nervous and stressed as the time has come i had bloods drawn last week and see consultant tomorrow morning for results. Am more apprehensive than i ever was when i knew things were awful! Xxx
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Hello MooseMom, just a quick note to tell you that I think of you and hope you are doing well?
Best wishes from Kristina. :grouphug;
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I have a weird one. I am 5.5 years post-tx. Earlier this year I had pneumonia - thankfully not bad enough to require hospitalization. Now first of all I should note that my creatinine is quite high due to a biopsy injury I suffered over 5 years ago. It settled in the low 3's, w/a GFR of 15-19. The 19 happened while I had pneumonia - a low of 2.4! It was then 2.7 for a while, and has now settled back around 3.2. I saw my tx dr earlier this month, and we repeated labs last Thursday, and will again in another 2 weeks. I feel fine, in fact, I feel better than I have in a while. I do appreciate that my tx dr is on the ball with watching everything, but both he and I are stumped that my kidney apparently likes it when I have pneumonia. Go figure! Maybe it's due to my not eating much when I was sick?
KarenInWA
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Moosemom, Hope your vacay went well and afforded you some peace and a little fun outside the world of worrying. Surely it will all turn out alright and you'll get to enjoy the rest of summer! ;)
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Dear Moosemom,
I wish you a great holiday and send you my best wishes and hope to "see you" soon again here.
Kind regards from Kristina. :grouphug;
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Hey Moosemom, Hope you are ok and hoping to hear an update from you soon.
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Hi, everyone! :waving;
Update alert. :P
My vacation was dreadful for all sorts of annoying reasons, the biggest one being that my PCP's office screwed up my referral to UW-Madison for the biopsy. "Screwed up" meaning "apparently just sat on it". Whoever gives approval for these things couldn't understand why the biopsy was going to be in Madison and not done locally. Duh. One would think that after five years, some bright spark would pick up my file and would figure it out. So a good chunk of holiday time was spent on the phone trying to get this sorted out and NOT resting my anxious brain.
We got home on a Tuesday night and turned right around on Wednesday morning to drive up to Madison where we spent the night so that I could be at the lab by 7:30 the next morning. I awoke at 2AM and couldn't get back to sleep, I was so nervous. I stopped trying and settled down to read. I kept getting so thirsty...it was just nerves. So I drank and peed, drank and peed, drank and peed until it was time to get up for real and head to the lab.
I had blood drawn and then toddled over to the transplant clinic, still not knowing if the referral came through on time. I guess it did, because I was ushered to my little room for the day. My husband had caught a nasty cold in CA and was spluttering his way through; I made him put on a mask! So a nurse comes in and briefly explains what it going to happen.
Then Jen (my tx neph's assistant; I see her at my annual appts) comes in and says that she has good news that serves to muddy the water.
My creatinine was back down where it usually is (1.17), and all of my other numbers (and there were a lot of them) were perfect.
So, I had the choice of whether to do the biopsy or not. Since I had had gone though so much red tape, and since I was already there, I said to go ahead and do it.
Another nurse comes in and explains exactly what the risks might be. I started thinking of KarenInWA (well, I had been thinking of her story for months), and I started thinking, too, that I wasn't sure that my labs warranted the risks.
She was just about to site the IV when the doctor who would perform the procedure came in. I pulled my hand away and talked to the doctor.
This is the important bit and why I wanted to post this...
The doctor told me that creatinine alone is a "very poor" indicator of renal function.
CREATININE ALONE IS A VERY POOR INDICATOR OF RENAL FUNCTION.
That's what I had been thinking all along. My creatinine had been elevated, BUT ALL OF MY OTHER NUMBERS WERE JUST ABOUT PERFECT.
He went on to say that he'd do the procedure if I wanted it, but it IS invasive. I asked him for his honest opinion, and he told me straight up that if it was his family member, he'd say "no".
So, I said, "Thank you very much. Good bye!", and that was the end of that.
I personally think that the constant drinking and peeing I did in the hours leading up to the biopsy tipped my creatinine downwards. I wasn't thinking, "Oh, I have to drink lots of water so that my numbers might improve.", rather, I was just very anxious and that seemed to give me a dry mouth/throat, hence the several bottles of water I went through.
I have my next set of labs later this month, and I won't be surprised if my creatinine is up again. If it is (I don't usually drink as much water as I did in Madison! That was a bit of an anomaly), I don't think anyone will be bothered by it.
So, the lesson is, once again, that creatinine alone and without context doesn't tell any one enough to warrant a biopsy. We all tend to look at creatinine first and creatinine primarily, but I've learned that this just does not tell the whole story, not by a long shot.
I hope this story helps someone out there and that it has made sense. If anyone has any questions or comments, please let me know. It was a very odd experience and didn't go as I thought it would, and I'm not complaining about that! I got a real break! Whew!
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Congratulations, MM. Good to have you back.
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Well done MM
:cheer: :cheer:
Now have a drink, and than drink some more.
Love, Cas
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That's wonderful news MooseMom! I was getting concerned when you did not post for a while. It sounds like you made the right decision about the biopsy. I will try to keep in mind what they told you about creatinine. Mine jumps around sometimes but I try not to freak out about it. Latest labs still show 18% so it makes it easier to be patient about the transplant. Here's hoping your creatinine stays down and you continue to be the poster child for successful transplants. You are my inspiration!
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Tigtink, I'm pleased to hear that your creatinine is still holding steady. In the grand scheme of things, 18% isn't bad at all, as long as you are feeling OK! I know how hard it is to wait; having patience is not easy, so I'm particularly glad to hear that you are still doing alright. Keep up the good work!
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Oh MooseMom, I want to hug your tx neph! What an awesome man for saying what he did and with such timing, too! And, that is good to know about creatinine. My creatinine has creeped back up to the low 3's after teasing me with a nice 2.4 back when I was sick with pneumonia early this year. I saw my tx neph a month ago when it showed up like that on my labs. We repeated them 2 weeks later only to have the same result. I will be repeating them again tomorrow. My BP is normal (no meds!) but I do have a case of what I like to call "Handsome Dr" hypertension.... (both my tx neph and my endocrinologist are close to my age, attractive and smart. I'm not blind OR dead!). My lipids are good (no meds for that, either!) and my K and phos are always in the normal range. I do take calcitriol 0.5mcg to manage PTH, but that and a twice yearly Prolia shot for osteoporosis are the only Rx meds I am on besides my anti-rejection ones.
So good to hear from you again!
KarenInWA
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I've suspected that for those of us that still have residual function, how important that is in helping keep are labs within bounds.
Water IS Good! Long before I began this adventure I had switched from soda's to water. I didn't like the 'bubbles' of soda, and as big as I was getting I really didn't need the sugar either.
Water makes a lot of sense.
I severely limit my fluids, being afraid of the gains and am amazed some days at weight-in as I knew I had given in and drank far more than I intended, yet I hadn't gained anywhere near as much as I had thought. Residual function had to have made a lot of the difference.
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MM: Glad everything is alright. Might not be the vacation you wanted but now you can take a vacation from the anxiety of a biopsy and I hope it's a mighty good long one too!
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Good news MM! I think you did the right thing and give you credit for being ok with saying "nevermind". And kudos to such a supportive doctor. This is probably not accurate, but I think of creatinine as being like BP. It's about the pattern or trend of the numbers over time.
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Dear MooseMom, thanks for the update and I am so happy for you that this doctor gave such an honest opinion for you to have the choice and even avoid an invasive kidney-biopsy! That is such a wonderful moment in life when a doctor acts like a friend!
Best wishes and further good luck from Kristina. :grouphug;
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Thanks everyone for your support! This is why I love IHD.
KarenInWA, I know, right? I was really surprised that the doc didn't try to persuade me to do it! I could have hugged him, too, but I was in such a hurry to get out of there ASAP!
PrimeTimer and Kristina, thanks for your kind words. I really appreciate it. :cuddle;
SooMK, but that's the thing. My creatinine suddenly spiked and remained elevated for 8 months. It didn't slowly creep up. It was more of a "spike" than a "trend", if that makes sense. But the mystery was in the fact that all of the rest of my numbers remained just fine. It was just all odd, but I've just got to let it go, now.
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Ah right. A mystery. I'm sure you explained that. Find myself forgetting things all the time these days. If only they were the things I want to forget instead of the things I want to remember. Hope this is last of the mysteries for you for a long time.
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Hi, everyone! :waving;
The doctor told me that creatinine alone is a "very poor" indicator of renal function.
CREATININE ALONE IS A VERY POOR INDICATOR OF RENAL FUNCTION.
That's what I had been thinking all along. My creatinine had been elevated, BUT ALL OF MY OTHER NUMBERS WERE JUST ABOUT PERFECT.
He went on to say that he'd do the procedure if I wanted it, but it IS invasive. I asked him for his honest opinion, and he told me straight up that if it was his family member, he'd say "no".
So, I said, "Thank you very much. Good bye!", and that was the end of that.
I personally think that the constant drinking and peeing I did in the hours leading up to the biopsy tipped my creatinine downwards. I wasn't thinking, "Oh, I have to drink lots of water so that my numbers might improve.", rather, I was just very anxious and that seemed to give me a dry mouth/throat, hence the several bottles of water I went through.
I have my next set of labs later this month, and I won't be surprised if my creatinine is up again. If it is (I don't usually drink as much water as I did in Madison! That was a bit of an anomaly), I don't think anyone will be bothered by it.
So, the lesson is, once again, that creatinine alone and without context doesn't tell any one enough to warrant a biopsy. We all tend to look at creatinine first and creatinine primarily, but I've learned that this just does not tell the whole story, not by a long shot.
I hope this story helps someone out there and that it has made sense. If anyone has any questions or comments, please let me know. It was a very odd experience and didn't go as I thought it would, and I'm not complaining about that! I got a real break! Whew!
Wow Moosemum, that was a fantastic update. I'm so glad you didn't end up having that biopsy because I have always been told that they are very invasive and can lead to further kidney damage.
Regarding your point about not relying on creatinine and Cr alone, that is a very important point that really needs to be considered further by any kidney patient. Hydration, along with eating animal protein (& who knows what else) can really impact our serum creatinine levels. Personally, I have also seen different creatinine results depending on which lab had conducted the analysis. I always seem to get lower creatinine results when I get tested at a hospital compared to the leading private pathology company where I normally get tested.
I do also know that different meds will affect creatinine levels artifically that has nothing to do with underlying kidney function, eg fenofibrates that treat high triglycerides. If fenofibrates will elevate serum Cr levels, I wonder what other drugs may also do as well?
Anyway, glad to hear the update. Keep up the good fight!
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It has been almost two years since my creatinine spiked (as outlined in my original post), and it has been just over a year since I was referred for a biopsy that ended up never taking place.
I wanted to share something that I learned that may help someone else somewhere down the road.
Renal transplant patients are always told to keep well hydrated and that even very mild dehydration can be a factor in elevated creatinine.
I had always been careful to drink more than I really felt the need to simply because I am a tx patient. There were times when I thought, "Uh oh. I am not sure that this month I really drank enough." But, even then my creatinine remained below 1.2.
Since last year, my creatinine remained anywhere between 1.25 and 1.3 which was fine but still was not good enough for my liking. (My other numbers have remained just fine throughout all of this.)
So, in the past few months, I decided to experiment a little bit and made a concerted effort to drink A LOT! Starting 2 days before labs, I'd drink at least 8 12oz glasses of water a day.
And sure enough, my creatinine dropped back down to below 1.2.
I take away a few things from this. One, at least I now have a strategy which is just to keep drinking drinking drinking drinking. Two, I am not sure why drinking this much more is necessary NOW but was not 2 years ago.
Anyway, that's it for now. I guess the bottom line is if you experience sudden elevated creatinine that remains above YOUR norm for an extended period of time, and IF your other numbers are OK, and IF there are no signs of rejection, try doubling (at least) the amount of water you are drinking.
I know that sounds obvious now after two years, but I really thought I was drinking enough. It seems that now I need more hydration for whatever reason.
I hope all of this helps someone out there.
Thanks to everyone who has read and/or responded to all of this. I am grateful for this very supportive community.
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Thanks for sharing it with us.
Take care.
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MM, I am right there with you. In April and May, my creatnine was above my normal baseline and my tac level was a little wonky too. So I buckled down, hydrated like heck and was super diligent to make sure that I got my labs done at the exact 12 hour trough level (not 11 hours and not 13 hours).
Lo and behold, everything was back on an even keel. And I thought I was hydrating...like you said, I guess things can change over time.
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MM, I am right there with you. In April and May, my creatnine was above my normal baseline and my tac level was a little wonky too. So I buckled down, hydrated like heck and was super diligent to make sure that I got my labs done at the exact 12 hour trough level (not 11 hours and not 13 hours).
Lo and behold, everything was back on an even keel. And I thought I was hydrating...like you said, I guess things can change over time.
Oh, that's really interesting! Thanks so much for posting this!
Do you measure how much you drink in a day (not counting for fluid intake like soup or water in fruit, etc)? I've starting doing just that as a bit of an experiment, using the color of my urine as a guide of sorts. Do you have a fluid intake goal? SHOULD you/we have a goal? What do you think?