I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Deanne on March 20, 2015, 01:38:27 PM
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This probably doesn't belong here, but I'm not sure where to put it. I've been prescribed 20 tablets of oxycodone/Tylenol that I need to make last for about three weeks. To be reasonably comfortable, I need to take one at 9:00 pm and two at 1:00 am (about 60 tablets for three weeks). I tried taking one tablet at 9:00 and one at 1:00 am and it was ineffective, and now I'll be limited to just one at 1:00 am. Is there anything I can take with them to make each tablet more effective? I don't think one tablet at 1:00 am will even take the edge off and I don't know if it's worth taking it if there's nothing that will give it a performance boost.
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Is there some reason your MD has prescribed painkillers at a level less than what you need? Does (s)he think that you are using too many, staying on them too log, or just paranoid about being hassled by the DEA?
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I think because he's never seen me before / doesn't know me, so he gave me one tablet/night since I told him I only take them at night. It's the surgeon who'll remove my parathyroids. I had my initial consultation with him today and asked for oxycodone to help me get through until surgery. With the new restrictions on it, it's hard to get. I think it requires an in-person visit to the doctor to get a prescription. My neph is always very booked up and I make appointments with her months in advance and I don't have a primary care doctor. I've survived three weeks with nothing, so I guess if I have to do without, I'll make it, but nighttime has been very painful.
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Why do you take painkillers only at night?
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One warning on dialysis the pills last longer. The kidneys remove the drug and with reduced kidney function the effect of the pills last. Just before starting dialysis I had rotator cuff surgery and was prescribed oxy I was out of it for a week. I knew I was in trouble when I started talking to my iPad and it was answering. It was not turned on at the time. Recently a patatientbarived at the dialysis center stoned to the gills. Her doctor prescribed oxy and she was so bad she had her shoes on the wrong feet. After dialysis she was fine. The nephroligist had her take a half a pill after every dialysis session.
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Is the idea that on three weeks you will no longer need them? If so could you use more initially and taper of later as you feel better?
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I'm only in pain at night. With or without pain meds, it's a very consistent pattern:
With oxycodone, I take a tablet at 9pm and go to bed. I wake up at 1:00 to go to the bathroom and take two oxycodone tablets. As soon as I get back into bed, the pain level increases, but it's quickly knocked down and I can get back to sleep. It seems to have something to do with getting up during the night. I wake up at 3 am in more pain, but it's tolerable and although I'm aware of it in my sleep, I can still get back to sleep until 5 - 6 am when I can no longer ignore it and I get up for the day. I'm able to walk fairly normally, with just a slight shuffle, and the pain is mostly gone by 8 am.
Without oxycondone, I go to bed at 9:00 and the first twinges generally hit at about 11 pm. I can usually get back to sleep, but I'm aware of the pain in my sleep. At midnight the pain level starts to get increase and is harder to sleep through. Sometimes it's fairly intense by then. By 2 am, there's no hope of sleeping anymore. By 3 am, I'm torn between crying and screaming. I've tried to get up and walk it off, but that isn't effective and any movement seems to make it worse. I've thought about calling 911 or trying to drive to the emergency room. Instead, I just lay as still as possible on a heating pad and focus on trying to stay relaxed, watch TV, or listen to meditation recordings to try to distract myself from it. I give up at about 5 am and get up for the day. Then I can barely walk for another hour. I sort of shuffle around, hang onto walls, etc. The pain level finally starts to decrease at 8 am and I'm able to function normally at around lunchtime.
The rest of the day I'm fine. I have some muscle weakness, but I think that's a separate symptom of hypercalcemia that would be there with or without the pain at night.
I've been considering going floating (sensory deprivation float tank) during the night, but at $65/session, I can't do that very often. I might still consider booking a 2 am appointment to see what happens.
I haven't had a problem with my transplant clearing with the drug. No weird visions, voices, anything else. Maybe it would make me feel better to be stoned to the gills. But it's a good thought - Pot becomes legal here in July and I bet it wouldn't be difficult to find someone who makes brownies that I could try.
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Is the idea that on three weeks you will no longer need them? If so could you use more initially and taper of later as you feel better?
The idea is that I should have my parathyroids removed in about three weeks, and this is all caused by hypercalcemia, which is caused by hyperparathyroidism. I'm hoping as soon as my parathyroids are removed, this will all go away, like turning off a water faucet.
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Thanks Michael!!! Your statement "stoned to the gills" made me think about "stoned" in general. I sent a text message to the friend who might know where to get brownies. She does know someone! I won't smoke anything. I know the potential for fungus in the lungs is a huge risk, but brownies..... I'm willing to try them.
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I see no reason not to call him back and saying you're still in terrible pain and need more help until the surgery. Tell his nurse the same thing you told us here. I believe you have to pick up a physical prescription but I don't think you need another appt.
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A few of the OTC name brands of acetaminophen have caffeine added to enhance the pain reduction. Don't know how much. Some people swear by it.
I know that I can drink a cup of coffee and go straight to bed. The pain effectively cancels any 'alertness' from the coffee, I can get right to sleep.
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Deanne, I wonder if it might be an idea to try taking just extra strength Tylenol on a 24 hour basis, following the dosage recommendations on the package. Since it is for only three weeks, I see no harm in it. The idea is to prevent the pain from taking hold. This is the general idea in dealing with any pain; catch it before it catches you. So maybe take your first dose in the afternoon, even if you are not in pain yet, and then take the next dose at 9 like you usually do, and so on. It may be an experiment worth trying.
I know that you may not have enough oxy to last you for three weeks if you were to try this, so that's why I suggest Tylenol.
This must be very frustrating for you. I'm really sorry, and I hope the surgery will solve the problem.
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I try not to buy name brands like Tylenol, opting for the most often cheaper acetaminophen in the 500MG tabs.
USED to be allowable 4000 units daily which I am still taking. Two 500's every 6 hours. Dr's have since REDUCED the daily intake setting the limit now at 3000. Some people may have developed liver problems at the higher dose.
Be aware of your use. If you are taking any of the traditional pain pills, check to be sure, many include acetaminophen and this should be figured into your daily intake so as NOT to exceed those limits.
It simply would do well in dialysis if you were to start damaging your liver.
Take Care,
Charlie B
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Thanks Jeannea - sometimes I miss the obvious about calling to ask for an additional prescription. I was making an assumption that he wouldn't allow any more, but then I didn't ask, either.
I tried your suggestion MooseMom - didn't work.
I'll keep an eye on the Tylenol dose, Charlie.
My friend with connections got a cookie to me yesterday with instructions to have a small nibble, wait 20 minutes, and then another small nibble if necessary and if my mouth got dry, I could know it was taking effect. I didn't notice anything after two small nibbles, but I stopped there anyway. I slept pretty well until 3 am, took only one oxycodone and then was able to go back to sleep until my normal time to get up. My joints ache this morning, but I feel much better than I have in about three weeks. Now to see if I have the same results tonight.
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If that cookie recipe is similar to the brownies I used to make, it may work far better than most of the pills prescribed, and have less of the numbing side-effects of the pills.
I just finished ordering empty gelatin capsules that I plan to partially fill for my wife's eyes. Diabetic and doesn't watch her sugars well enough. Ocular pressure is too high, already had three lazer procedures to control bleeds. Dr won't even consider removing her cataracts until she gets pressures under control. I'm hoping these 'pills' will make a positive difference. I don't need her to lose her eyesight.
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I'm convinced. I slept all the way through the night last night on only a small bite of a cookie. I also did some web surfing on the effects of edibles on kidney transplants to make sure I'm not doing anything to put myself at risk. From what I'm seeing, the opposite might be true. It looks like studies have been done that show it has immune suppressant and anti-inflammatory effects that might be beneficial to transplant recipients.
PDF file attached from http://download.springer.com/static/pdf/596/art%253A10.1007%252Fs11481-013-9485-1.pdf?auth66=1427214294_f8dd4f0cd75e6cdb06e3a77c2940a266&ext=.pdf
At the end of the abstract: "... these data support the potential of this class of compounds as useful therapies to prolong graft survival in transplant patients."
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Oh Deanne, I'm thrilled that you've found something that helps you!!
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The link doesn't work for me, give some 'Error'. I was curious to see when this information came about.
State and Fed government is so slow to admit that there ARE definate medical benefits from THC in it's various forms. A simple plant that can assist with many afflictions. And we are repeatedly told 'No' and treated like criminals simple trying to improve our healtlh. Yet they, the Gov, approve and allow al sorts of poisons to be used in our foods.
Doesn't make a lot of sense, does it?
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I attached the PDF file to my earlier post. It's divided into two pieces.
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Deanne, when my late husband was terminally ill with cancer he complained all the time about the pain. His Dr. said to try taking 2 Excedrin exactly between the times you were taking, well, he was taking Dilaudid and it did seem to help him. Kind of like a booster thing I think. But on the other hand, if pot helps you, I say go for it.
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Still no end in sight. My vitamin D level came in high last week and my neph said that because of it, she isn't convinced now that removing my parathyroids will fix anything. Yesterday she called to tell me she wants me to see an endocrinologist. Then today, I had labs run and my calcium dropped below 11, but my PTH went over 200, even though she doubled my dose of Sensipar. My PTH was 140 two weeks ago.
My joints hurt now, I've lost enough muscle mass that it's hard to walk more than a mile or two, and I've been having a lot of stomach upsets and some vomiting.
She called tonight and she just doesn't know and she's going to send me to the transplant clinic instead of to the endocrinologist.
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This all sounds awful. How soon can you get in at transplant clinic? I would call the coordinator ahead of time and make sure there were lots of rule out tests on the blood test list for that day. Thyroid, PTH, liver function, all your usual kidney function, probably a urine creatinine and protein, whatever else they like. I hate getting 8 or 10 tubes drawn as much as anyone but I hate extra sticks too.
You must be miserable. Make sure they know it. You need help.
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How very frustrating for you. I hope you can get to the tx clinic very soon. I'm just baffled.
So, your muscles AND your joints are now causing you pain? Is that right? Has the overall intensity of your pain decreased at all?
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My muscles don't hurt. I think they're just gone, or at least don't want to work with me right now. The joint pain is new. I tried going to bed without any kind of pain killer last night and I didn't wake up screaming in pain during the night - huge relief! I had trouble sleeping, but maybe I was just getting too used to the pain killers knocking me out for the night. Some things are better, others are worse or new. There might be more better than worse - yay! Maybe I'm slowly getting better overall.
I don't like the mysteries much though. Why did my PTH rise after Sensipar was increased? To me, this says even more that my parathyroids need to go. Why is my Vitamin D level high? That might be why my calcium level spiked. A web search shows the only reason for Vitamin D to spike is an overdose of supplements, but I don't take supplements for it. I drank Ensure and Glucerna for breakfast when I had a cold, but I checked the labels and they don't have a huge level of either calcium or Vitamin D. The multivitamin I use has 200% of Vitamin D in it, but I forget to take them more often than I remember, and comparing that amount to stand-alone Vitamin D supplements, the amount in the multivitamin isn't extreme. The Vitamin D level is what made my neph put a hold on removing my parathyroids and send me back to the transplant center to look for answers.
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I LOVE a good mystery, but not this one.
I'm glad you are posting all of the "evidence" as I am so curious to know WTF is going on! I'm ready to get to the end of this book, though!!!
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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.
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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.
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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! :bow;
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Hooray for doctor to doctor influence!
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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?"
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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.
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Tertiary hyperparathyroidism???? Tertiary? Well, aren't you special!!! :P 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?
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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.
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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?
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You can make it 2 weeks. I hope this is what you need.
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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.
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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?