Dazed and confused

[lainiepop]

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!

[MooseMom]

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.

[SooMK]

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.

[MooseMom]

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.

[Xplantdad]

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.

[MooseMom]

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!

[cassandra]

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

[MooseMom]

Thank you, Cass.  That's kind of you.

[LorinnPKD]

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.

[MooseMom]

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.

[LorinnPKD]

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.

[iolaire]

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.)

[MooseMom]

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. 

[MooseMom]

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.

[Xplantdad]

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!!

[iolaire]

@Xplantdad  thank you for the reply

[MooseMom]

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.

[Xplantdad]

That's it...they classified her as having neutropenia! Thanks for the 'mind slap'

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!

[MooseMom]

That's it...they classified her as having neutropenia! Thanks for the 'mind slap'

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.

[Xplantdad]

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

 

[lainiepop]

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

[MooseMom]

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.

[Xplantdad]

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  . Everything else is irrelevant! 

[MooseMom]

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.

[Michelle2016]

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.