More new stuff. Have to call my neph today

[Deanne]

It seems like I hit my 1-year anniversary and my body started to go to pot. First I caught a cold, then as that was finally going away, I started having weird skin sensations. My skin feels warm to the touch, but internally it feels cold. My feet feel like ice cubes right now in slippers and covered by two blankets, but I know if I touch them, they'll be warm to the touch. If I touch something cool, it feels like ice. If I touch something warm, like put my hand on my bare skin, it feels hot. Warm water is bliss.

A couple days after that all started, I started being woken in the middle of the night by hip and lower back pain. Tylenol doesn't do anything for it. My mattress has never caused problems before, but I tried sleeping in my spare room where I have a new mattress. Still hurts. I tried the couch. Nope. I only got four hours of sleep last night because it hurt so much. Since I was awake in the middle of the night and had a thermometer sitting next to me from when I had the cold, I took my temperature. It was only 96.4. Normal for me is 97.7. My hips, back, extending into my thighs hurt for a while into the morning, but later it's fine. I've been going out to walk in the evenings with no problem. Now my eyes look red. It might just be lack of sleep, but adding it all together, it's getting worrisome. Is it some kind of systemic virus from the cold?

And I think I have thrush.

  to this body!

[MooseMom]

Geez, Deanne.    Get it together, woman!   

Seriously, though, I wouldn't want to hazard a guess, although one has to wonder if it could possibly be one of the alphabet viruses...CMV, etc.  Did anyone check for that?  But I don't know what would cause you hip and back pain, and it is weird that the pain seems to disappear as the day goes by.

My husband has been ill and in bed with severe vertigo for a week now.  I've been sleeping on the couch as I am afraid that if I go into one of the guestrooms, I might now hear him in the middle of the night should he need something.  So I haven't had much sleep for 7 nights, and I don't feel like a member of the human race as a result.  My point is that lack of quality sleep makes you feel awful in and of itself, but added to the other stuff going on in your world, I don't blame you for being concerned.

When do you next see your neph?

[Deanne]

I see her in April. I haven't been tested for anything yet because when this all started, I figured it was just went along with the cold so I haven't called her about any of it yet. However, the cold is gone now, except for a residual cough, and that's normal for me. Maybe this other stuff would get better, too, but the pain during the night won't wait that long, and it's all getting kind of scary.

[jeannea]

It sounds scary. I would recommend calling your transplant coordinator. They may want to see you at clinic.

Are you taking any beta blockers for your BP? They give me what I call cold flashes. You feel incredibly cold inside and sweaters and blankets don't seem to help.

The pain sounds tough. When you can't sleep, it can be worse to toss and turn and try. Just do something in bed. Read, crosswords, needlepoint, whatever. Hopefully at some point your eyes will get heavy and you'll sleep again. Of course you want to find out the source of the pain but it's a temporary solution.

I hope you feel better soon. Try not to panic. It's easy to but you can do it.

[Deanne]

I'm trying to avoid going to the clinic. It's at the top of a hill and one of the places it's hard for me to drive to now. The stand in for my neph didn't call back. Grrr. I have a few Vicodin left and thought that would get me through the weekend. Didn't work. It's starting to feel better now for tonight, I think. I tried walking it off for a while, just took a couple Tylenol and am laying on a heating pad. I think I'm driving my dog and cats crazy with my middle of the night antics. They like to sleep with me and I keep moving to different beds. At least I'm getting some entertainment value out of it!

No beta blockers. No new medication changes.

[Deanne]

My neph called back first thing this morning. She said Prograf can cause neurological issues that could be the cause, especially since I told her I wasn't eating well since I had the cold. My weight is down about 7 pounds since then. She also wants to have my thyroid checked. Hopefully just a couple more nights of pain before I have a solution.

Modified: Pain killers don't touch the pain. Does that tie in with this potentially being neurological instead of physical? A pain killer would work against things like "real" pain (muscle, bone, etc), but if the issue is neurological, then a pain killer wouldn't have anything to work on. Just curious.

[jeannea]

Yes Prograf can cause neurological issues. The simplest is the neurological pain in feet and hands. The worst is PRES. Please be careful about your Prograf level so you don't get too high and get PRES. Start eating or get a blood test to check your level.

Regular pain killers don't usually help with neurological pain. Most of the time Neurontin (gabapentin) is used for neurological pain. Some use Lyrica. And there must be others. It's horrible to be in pain all the time. I hope your doc can help. I suppose it's also possible you have physical pain but your pain killers are not strong enough.

Keep in touch with your doc. Let us know. These episodes when things seem to be going wrong are really tough. You can do it.

[Angiepkd]

So sorry to hear this, Deanne!  I feel a little bit like you.  I went from having no problems to having everything fall apart at the one year mark. Every time I report a new symptom, it either lands me in the hospital or with an appointment to a new specialist.  My life is consumed with doctor visits.  I really thought I would be back with my normal nephrologist at one year, but am stuck with the transplant clinic visits every two weeks.  I hope you get answers and feel better soon.  Keep us posted!   

[Deanne]

Thanks everyone for your encouragement. It's frustrating, scary, and awful to even think about going to bed every night, knowing what's waiting for me, and it seems like things get a little bit worse every day. The pain lasts a longer into the morning every day. I had trouble taking my dog for a short walk yesterday after on Sunday I walked 3.5 miles with friends. Granted, that was very difficult, but I managed. I went in this morning for labs and should know the results tomorrow.

Jeannea, how did you know about PRES? Did you end up with it? I'd never heard of it before and had to go look it up. It sounds awful. I wish home tests were available for some of this stuff so we could keep a closer eye on it all on our own, and I wish transplant centers gave more detailed information up-front, or a whole book about what to watch for and what it might mean, instead of the basic "watch your weight, blood pressure, and temperature." Granted, they told me to either always eat or never eat with medications, and I have always had something with them. What's been difficult is eating the same amount all the time. Some guidelines up-front would help. I'll have to ask more about it. Is it the amount of calories that count, the density of the food, what? When I can't eat very well, I've had an Ensure or a glass of milk, or a small snack, trying to stay focused on phosphorus and magnesium. Maybe that isn't good enough. Who knows!?

Angiepkd, we got our transplants at nearly the same time. At least I was released to my regular nephrologist before everything went to pot. I thought we were supposed to be back to "living" at the 1-year mark! WTH? You ended up with meningitis. I'm sure I don't have anything nearly as bad as that, but it's just one thing after another. Will it ever end, and end well?

[Angiepkd]

Hang in there, Deanne!  We can get through this.  We have very good doctors looking out for us and have made it through the first year, which I am told is the hardest.  It's nice to be able to vent on IHD where people understand.  Chronic pain is horrible, and it is something they should be able to help you with.  Keep pushing the doc until you are comfortable again.  I like to quote Dory (from Finding Nemo),  "Just keep swimming.  Just keep swimming".  Sorry, I watch way too many kid movies    Good luck with everything!

[jeannea]

Unfortunately, I had a bad case of PRES but it was a complicated journey. I began with terrible abdominal pain. I went through a bunch of testing with gastro. Colonoscopy and other stuff showed no cause even with my history of CMV colitis. The doc gave me an old antidepressant for "functional" pain. This went on for over 2 years. I just assumed pain was my life. Then I started with diarrhea which got worse. I don't remember if I was good about getting my labs done. Probably not. I was eating very little each day. I wasn't interested in food. Jan 2009 I got a case of bronchitis. After that the pain got worse. I was at the emergency room for severe pain maybe 5 times. I was admitted 3 times I think. Lots of tests, still nothing. Finally a biopsy sample from a colonoscopy showed CMV. By then I had CMV and c diff. I was in constant pain. I was all swollen, retaining fluids. I was staying with my parents because I couldn't function. One day in late April my mom found me in the kitchen at 6:30am. I had drunk a quart of water from the fridge and I was incoherent. I didn't know how to get in the car so they shoved me in and took me to the hospital. Once there I had a seizure. I ended up intubated in ICU. My nephrologist had me helicoptered to my transplant hospital. They didn't even know the diagnosis at first. I was in a coma for 2 weeks. They weren't sure I would recover. I did recover but I was on dialysis. My first transplant had given up. I had a lot of problems from the encephalitis. I still have problems with parts of my brain function. PRES can come in various strebgth apparently but I had it bad.

Prograf ends up being dosed partly on your weight. You need more of it usually if you are bigger. So extreme weight loss can lead to your prograf level being too high. Just try to eat balanced each day and get your blood tests done.

[MooseMom]

Deanne, PLEASE let us know about your lab results.  I just can't imagine what the problem could be.  I am so sorry you are having to put up with all of this.  Having to deal with chronic pain...well, that must be so difficult.

[Deanne]

I'm waiting for my lab results to come in, and almost obsessively checking for them online. So far the thyroid test came back as normal, and my phosphorus and magnesium are also surprisingly in the normal range. Maybe I've been eating better than I thought I was. It's always a struggle to keep these values in the normal range.


Jeannea, when you had PRES, did your tacrolimus level look normal the whole time, or was it CMV at the beginning and then PRES followed along for the ride? You've been through the wringer many, many times! I'm glad you're still here to talk to us. I knew you had it rough, but sheesh! I looked up tacrolimus toxicity and it seems the symptoms are all over the map.

[jeannea]

Normal magnesium? I'm jealous. Mine is so low even with supplements.

I just don't remember what my tacro results were in the 3 months leading up to PRES. It must have been tested since I was hospitalized. I think when I had the seizure it was over 30. I think there must have been some sort of building up to the PRES. Looking back after, I could see some problems I had with concentration and decision making. Later when I went to get listed, there was a lot of discussion among the committee whether I could handle taking it again. They decided my problem was a perfect storm and unlikely to recur.

I don't want to scare you. My experience is extremely rare. I hope you get relief soon from the pain. Pain comes from so many sources. I don't really know what would cause your hip and back pain. Keep getting them to help you.

[Deanne]

Your experiences don't scare me jeannea. They serve as a reminder that it's important to be careful and vigilant. I need reminders like this because I tend to be over-confident sometimes and have to resist the temptation to take risks.

My neph hasn't called yet, but my lab reports were just posted online. Except for the following, everything looked pretty typical: my blood sugar was a bit high (126) but lower than when I first caught the cold, and I did have a glass of milk in the middle of the night, my creatinine was higher than normal and unchanged since I caught the cold (1.21 versus normal of 0.9), my calcium level is up t0 12.6 (I have a PTH problem yet), everything looks perfect. My Prograf level came in at 5.3. I was sure it would be very high and I was kind of hoping it was. It would be an explanation with a probable known solution.

My PTH results aren't online yet. It's my own personal next possible cause. I read online that long-term PTH problems can cause more than just bone loss: fatigue, loss of interest in activities, high blood pressure, and on and on. It was a long list.

[Deanne]

Finally a probable answer. Calcium level. It's higher than it's ever been and can explain everything . I'll double Sensipar for now and likely have parathyroids removed very soon.

[MooseMom]

Finally a probable answer. Calcium level. It's higher than it's ever been and can explain everything . I'll double Sensipar for now and likely have parathyroids removed very soon.

Well, that doesn't sound like fun, but if that's what works, then that can be the answer.  Keep us updated.

[jeannea]

It's a relief to know an answer. I never had that surgery but lots of people on here have had it done. I hope it helps.

[Angiepkd]

Glad you got a plausible answer finally!  Hope the surgery goes smoothly and fixes everything!  Keep us posted!

[Deanne]

The parathyroid surgery won't be a big deal. I haven't asked anyone about it yet, but of course I did a web search to see what it involves. It's about a 20-minute out-patient procedure. I have to get a bone scan (not bone density test) first. That's a 2-part procedure. I go in to be turned radioactive, leave, and then return a few hours later for the scan. I imagine it takes a while for the radioactive dye to get through the bloodstream and into bones.