How to make pain killers more effective

[Deanne]

It seems this might be an epic book. The transplant center referred me to an endocrinologist who called to schedule an appointment for me.... in AUGUST! I scheduled it but immediately called my neph's office. 

[Charlie B53]

August is way to long a wait.  Someone is very busy.  I doubt it.

Call and double check, someone HAS to cancel before that.  You may have to check back weekly til someone does cancel.

[Deanne]

It's because the transplant center set it up and not my neph. They tried to schedule another appointment months in advance, too. I went elsewhere. My neph is working it. If she can't get me in quickly, she'll find another endo.

Updated: After a couple of rounds with the endocrinologist that the transplant center recommended and my nephrologist rejected (they offered me an appointment in June), a different endocrinology office just called to offer me an appointment on Monday morning. I love my neph! 

[jeannea]

Hooray for doctor to doctor influence!

[Simon Dog]

Hooray for doctor to doctor influence!

Same thing happened to me.   I told one of my docs I had an appointment to be evaluated for a transplant (hip, not kidney) in 4 weeks.  He asked "would you like it sooner?".

The ortho surgeons office called the next day "what time tomorrow works for you?"

[Deanne]

It's been a while. I'm still sick.

I saw the endocrinologist and she re-ran labs. I also saw my neph, who's first comment when she saw me was "You're still alive!" She isn't used to hearing from me outside of scheduled appointments, so when I call to tell her I have a problem, she's pretty quick to take it seriously.

The endocrinologist agreed that the issue is likely my parathyroids and asked me to follow up with her in three months. They're ready to call it tertiary hypoparathyroidism instead of secondary hypoparathroidism. My neph, thankfully, said "No,we're having your parathyroids removed." I saw the surgeon again last week and thought I'd be getting a surgery date. But no, of course not! He needs an ultrasound first, so now I'm waiting for insurance approval. The surgeon is also on vacation again this week, so now I'm hoping to get the ultrasound done this week and then hope he'll agree to surgery as soon as he returns.

I'm also almost out of Sensipar and would need a new prescription. It's a race to see if I can get surgery scheduled before I need to go without Sensipar for more than a few days. A new prescription will take a week or so to arrive. I'm trying to severely restrict dairy to try to keep my calcium level down. It's still hanging at around 11 and I can tell now when it starts to increase.
In the meantime, I'm not in pain all night anymore, but I'm constantly uncomfortable and my mobility continues to decrease. My walking friends and I cut down our weekend walks to two miles instead of four. That worked for three weeks, but now I don't think I can walk two miles, either.

I still eat a bite of "cookie" before bed every night and take oxycodone in the afternoons when the discomfort gets to be too much. Once a week or so, I try to do without the cookie before bed, but I pay for it with even less mobility and more discomfort the next day.

[MooseMom]

Tertiary hyperparathyroidism?  Tertiary?  Well, aren't you special!!!    I've never heard of that!

Not liking these latest chapter in this book.  It's dragging a bit, Deanne.  LOL!  Don't let it keep going like Game of Thrones!

I hope your surgeon is enjoying his vacation and will come back raring to go and get rid of your parathyroids.  Thank goodness you don't have to wait THREE MONTHS!!!

Let us know when you can have your ultrasound.  When will your surgeon return?

[Deanne]

I finally have a date!

The surgeon came back from vacation on Tuesday and I called his office Tuesday afternoon about the ultrasound and got the phone number for the imaging center. The imaging center had a cancellation that afternoon - done! Yay! After a couple more phone calls, I got a surgery date for May 13. I hope the next two weeks go very quickly.

[MooseMom]

I'm very glad you got a date at last.  Hopefully this whole nightmare will soon be over.  Will they remove all of the parathyroids, or do you keep one or two?  How does that work?

[jeannea]

You can make it 2 weeks. I hope this is what you need.

[Deanne]

I think the plan is to remove all of them, cut one in half, and re-implant that half either in the original location or under the skin on my arm or chest to make it easier to access in case it needs to be removed later.

Thanks for the encouragement jeannea. A week and a half to go. It'll be a hard week, but thankfully, I'll be kept busy so I won't have a lot of time to think about it.

I have to keep reminding myself that I won't suddenly be back to normal when I wake up from surgery. I think it'll take a while. I've lost so much muscle that I can only be on my feet for about 15 minutes at a time. I don't want to know how bad my labs probably are right now. I don't eat very often, I've been avoiding dairy, and the magnesium supplements make me gag too much to always take them.

[MooseMom]

I hope you can work with your doctors to set up some sort of rehabilitation program.  Physical therapy, as you mentioned in a separate thread, may be useful, but I wonder if you may need to see a nutritionist, too.  I don't think PT will help if you are not eating and are undernourished. 

I'm glad you will be busy for the days leading up to surgery.  Is this day surgery, or will you have to spend a night or two in the hospital?