The next chapter in my book

[Deanne]

When last we read from this story, our heroine (me) just had surgery to remove those nasty little parathyroids and she assumed she was days away from a full recovery. Fast forward one week to my neph appointment yesterday.

I'm still having a lot of issues. Actually, not much has changed at all. I can think more clearly. Sometimes I can sit upright more comfortably. I can eat. However, the neurological issues are still there. My hands hurt, especially if I don't wear gloves. My whole body tremors. I have tics, especially with my right eye. Sometimes the tremors and tics are just a bit. Sometimes, like yesterday, it's all very pronounced. Sometimes I can walk a bit. Sometimes, like yesterday, it's more of a shuffle than a walk and I feel like I need to be especially careful not to tip over, and (new development) I'm not sleeping very well anymore. I think I'm only sleeping 3 - 4 hours/night with lots of interruptions. I thought it was just taking a while to heal and I thought maybe my nerves were over-firing while they work their way back to normal. After all, I have three full months of damage to recover from.

My neph says "no." She said I should be fine by now and I think she was a bit shocked to see me shuffle into her office and then sit and shake uncontrollably and twitch my way through my visit with her. Something is still very wrong. She's considering prograf neurotoxicity and told me to hold it last night and this morning. My prograf level wasn't back from the lab yet and I'm hoping it's very high. I can live with that answer; it has a solution. However, if it's prograf in general, no matter what the level ...? I don't want to go there until I get my lab results back. She's also running more tests and / or repeating some of the past thyroid tests and she has a call in to my transplant center. If my labs all come out normal, she said I might need to see a neurologist because she hasn't a clue what else might be wrong.

I think after that visit, my brain is now in a kind of of temporary shut-down / survival mode.

The odd part is that my renal labs all look better than ever. My creatinine came out at 0.8, even though I didn't think I was drinking enough (please pass the wine!). My magnesium and phosphorus levels are both well within the normal range, even though I haven't been taking supplements. My calcium level is still a little high, but at 10.5 it shouldn't be causing symptoms. WTH? Does this make sense to anyone?

[MuddyGurl]

sorry to her this.  having the strain of the unknown  illness is awful.

"My magnesium and phosphorus levels are both well within the normal range, even though I haven't been taking supplements.

The answer to half of this is Mg is NOT kept in the blood, so a regular serum test will show as normal at 1-2%     Mg lives i the cells, so it can be sent quickly to the heart or brain should a CVA or stroke occur.. it's a bit more complicated, but a serum test won't show it.

 if you are still way low….you need "Magnesium RBC"  test, which is damn hard to find. I asked my local fancy modern Hospital and they dont do it either. if I lived in a big town with a Labcorps lab I could order it by mail via  requestatest.com.   

So you MAY be normal in Mg, or you may not be..I don't know about the other minerals…

best of luck.

[Deanne]

RE: Magnesium - I trust my nephrologist.

RE: everything else. My neph said she's pretty sure I'm having trouble with prograf and said I might need to change to Rapamune. My prograf level came in at 5.7, so the problem definitely isn't the level. For now, she said to stop taking Prograf. It makes me a bit nervous to not take it, but at the same time, I really want to try not taking it to see if all of this goes away.

What are your experiences with Rapamune? Is it like Prograf where a timed / trough blood draw is needed, or is it more flexible? How many tablets per day and how many times per day do you take it? What are the side effects?

[Angiepkd]

Sorry to hear this, Deanne!  I can relate to everything you are going through.  I am now only on 1 1/2 mgs of prograf per day, and still no relief from the tremors.  Hoping it all works itself out and researching everything to try to find another solution.  I have read a lot about vitamin B12 deficiency and my symptoms do correlate with that problem.  I had a B12 blood test in January, and it was 400, still in the normal range but at the lower end.  Doc ordered an mma blood test which is a better indicator of B12 deficiency, and it came back on the very high end of normal, but still "in range".  My neph went ahead and prescribed a B12 supplement, and I am waiting to see if I notice any improvement.  He wasn't keen on giving me a B12 shot, which works much better, but I am willing to give this a try.  I hope they find a solution for you soon!  Hang in there!

[Rerun]

I hope you get this figured out soon.

               

[SooMK]

The curse of the interesting patient! I aspire to always be a boring patient. I wish you were too. I sure hope they figure it out and get you fixed ASAP.

[Deanne]

My transplant center insists on Prograf. They won't allow me to change to Rapamune. After doing some web searching, I understand why, but my neph said if she had her choice, she'd take me off Prograf. In the end, it'll be my decision. They can't sit in my house with me and shove pills down my throat. I want to stay on Prograf if I can because I read that it likely provides a longer transplant life. However, if it results in a poor quality of life, I'll have to let it go.

It's interesting to watch how the different agendas from agendas from the transplant center and my neph clash. I told my neph that I don't always know if the transplant was the right thing for me. It seems like I've been sick more often than not since transplant. My neph listened and said if I have to let it go, she'll understand and help me. When I had that conversation with the transplant center, the reaction was entirely different. They made it clear to me that my (their) goal is a long transplant life, no matter what. I'm sure they're looking at the numbers they need to publish. The patient is just a body that provides their numbers. I keep thinking of how they must report out their statistics: "Bummer that we lost the patient, but the kidney is still good! We rock!" I think I'm getting just a wee bit jaded!

I was off Prograf altogether for a week at my neph's instruction and now, as a compromise, my neph cut my Prograf dose in half and I restarted it last night. I was on 2x2 and am now on 1x1, and I'm to call her immediately if I notice any change for the worse. I don't know if my new Prograf dose is a permanent change or temporary.

It isn't / wasn't just a "normal" tremor. My whole body had a tremor and it was even hard to speak or walk because it affected my voice and balance. The transplant center said they've had success using a beta blocker to counter the tremors, so I'm also taking 12.5 mg of metoprolol every other day. I'm much better, but I don't know yet if it's because of the beta blocker and the break from Prograf or if I'm just still recovering from hypercalcemia.

The other neurological stuff is still a problem so I'm keeping my neurology appointment next month, at least for now. My hands, arms, and feet hurt. My toes are numb. I can pinch my skin and not feel it. I don't feel it when I have blood drawn. My hands and arms are always both hot and cold at the same time. It's kind of like being rubbed with Icy Hot all the time. It's been 80 degrees outside and when I'm outside and moving around, everything is ok, but I pull on a sweatshirt as soon as I walk back into the house, even though it was 75+ degrees inside.

LOL at SooMK! I always told my neph I was a boring patient, and I was until transplant! Even dialysis went very smoothly. My numbers were always great. I felt good and was active and fit.

Angiepkd, if you aren't on a beta blocker, would your clinic let you try taking one to see if it makes a difference in your tremors? Is your Prograf level very low on 1.5? Mine was 5.7 on 2x2, so I'm guessing it'll be around 3 on 1x1.

[MooseMom]

How do you think you will discover what exactly is easing the tremors (reduction of prograf, the beta blocker or recovery from hyperglycemia)?  Are you and your neph/tx team just going to experiment with your meds for a while?  I'm guessing yes...

[Deanne]

Just wait and see for now. What I'd like is to give it time to see if the other symptoms go away, and see what the neurologist says if the symptoms are still there until that appointment. If the symptoms go away and the neurologist can't find anything else, I want to ask my neph about trying Prograf 2x1 and see what happens for a month without changing anything else. If the issues return, it'd be pretty obvious that they're from Prograf. If all is still good, try to go back to 2x2. As far as I'm concerned, as long as my BP is ok, I don't care if I stay on the beta blocker permanently. If I can go back to 2x2 without a problem, I'll be comfortable blaming it on hypercalcemia.

[thegrammalady]

Sorry to hear your having problems. Feel better soon.

[Deanne]

I'm hoping I'm finally on the road to recovery. Many of the symptoms are finally slowly resolving. It's still difficult to walk very far, but I'm working on rebuilding strength. I think it might take a while.

I saw my neph yesterday. She said I can cancel the neurologist appointment. I'm on a beta blocker now to deal with the tremors, but I can't take it regularly due to low blood pressure, so I'm discontinuing amiloride and then will try to take the beta blocker every evening. I was on amiloride primarily to support my magnesium level, but it's primary task is to reduce blood pressure. My blood pressure bounces around with the temperature. A couple of days ago it was only 88/63. It was 90 degrees outside and I don't have A/C.

I can also stop taking phosphorus supplements, and if my next labs look good, I'll stop taking magnesium supplements. If the tremors and other symptoms are under control, I'll also be able to return to taking tac at 2x2. After being off it altogether for about a week, I've been on 1x2 for about the last week or two.

[SooMK]

This sounds "cautiously optimistic". I hope the worst is behind you. Wishing you strength and good days ahead.

[Angiepkd]

Angiepkd, if you aren't on a beta blocker, would your clinic let you try taking one to see if it makes a difference in your tremors? Is your Prograf level very low on 1.5? Mine was 5.7 on 2x2, so I'm guessing it'll be around 3 on 1x1.

Hope you are doing better Deanne!  My Prograf levels are around 6 on 1.5 per day.  This is not normal for me.  Since I had cryptococcal meningitis in January, I now have to take a large dose of the anti-fungal diflucenac Sp?.  This medication severely interacts with my Prograf levels.  Once I hit the one year mark from the meningitis, the infectious disease doc will lower me to a maintenance dose.  My neph has already warned me that my Prograf dose will go back up.  Not sure about the beta blocker for the tremors.  The only thing they mentioned was trying a new monthly IV treatment and stopping the Prograf altogether.  I would love this, but the medicine they gave me in the hospital destroyed my veins, so an IV each month would be a nightmare for me.  They won't allow me to have a pic line.  Even having blood drawn is a big event, usually involving two or three sticks.  I am hoping my veins return to normal as time passes, but docs aren't hopeful.  It's always something since transplant, but I am thankful for no D!







Edited: Fixed quote tag error-kitkatz,Admin