I Hate Dialysis Message Board
Off-Topic => Off-Topic: Talk about anything you want. => Topic started by: natnnnat on January 06, 2011, 06:22:09 PM
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Gregory has had his pre-op for a thyroidectomy scheduled Jan 13. When we last saw the surgeon I asked her what it was like for the patient, and how long it takes to recover, and similar questions, and of course (silly me) she gave me that stony look and statistically vague reply. They will remove all of his thryoid and one lymph gland. We are told to expect a day or two in hospital, and a week or so healing, followed by which they'll give him radiation in tablet form, and he stays in hosptial another three days while his radioactivity dies down. Then he is likely to be cancer free, as this operation is "common and usually very successful"
So people, if there's anyone out there who's been there, done that? We'd be really grateful to hear how it was and how it went. Did it hurt? Did it go smoothly? How long did it take to recover? Got any tips, tricks or what have you?
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I know nothing about either one, Nat, sorry, but I did want to wish you and Gregory luck. Radiation via tablet - incredible. Will he have any of the same side effects as total body irradiation?
My very best wishes to you both! :flower;
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i had a parathyroidectomy in 1999, it had nothing to do with cancer. i was in the hospital for a week because there was a problem with my blood pressure. i would have only been there for 2 days if it hadn't been for that. i had a very sore swollen throat and they had to give me something to reduce the swelling. it really wasn't all that bad.
best wishes and may everything go smoothly.
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I had 3 and a quarter parathyroids removed in 2006. It's considered day surgery here, but I was admitted because I sometimes have a hard time coming out of anesthetic. I've had no issues with it, except it didn't do what I was told it would do, lower phosphorus levels, and I just have a small scar on my throat that can't really be seen, unless you're really looking for it.
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I did parathyroid, not thyroid, but the recovery for mine wasn't a big deal. I was kept overnight more because of monitoring calcium levels, which drop dramatically when the overactive para is first pulled.
I do remember thinking the pain from the bandage tape, which was tugging on my skin at a weird angle, was worse than the slice and stitches.
I did a scan where they gave me a radioactive pill once. The nurse waddled down the hall, wearing incredibly heavy full lead gear, right down to her fingers in lead gloves, holding a pair of tongs which were clasping a lead container with a little plastic cup in it. She carefully set the container on the table next to me, and asked me to pull out the cup. The pill was in the cup. Then she picked up the lead container and backed towards the door. Then she smiled sweetly and said, "Now swallow that right up!" in a kindergarten teacher's voice.
Yum.
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The thyroid gland is quite different from the parathyroid glands (there are four). Renal patients have problems resulting from over-active parathyroid glands and are no more likely to have a thyroidectomy than anyone else.
The radioactive tablets would contain I-131 (radioactive iodine) which is absorbed only by the thyroid gland. This would kill off any thyroid cells that were left over after the surgery and might start new cancers.
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They are different yes, but having them out would involve a similar operation in a similar spot, so I figured stories about either would help Gregory. These stories are great and really helpful, people. Thousands of thanks. As usual.
Gregory's neph commented that thyroid cancers are common in transplant patients and dialysis patients. He didn't say what "common" meant. He did say that they didn't really know why.
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Im in the middle of a parathyroidectomy right now ! But like several of us on here its being done by medication. Yes there are side effects to the tablets, but then things do start to change. I dont really think its similar to what he is going to go through, but best of wishes for a speedy recovery !
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Mike had a parathyroidectomy.. he was in hospital for 11 days, only cause his calcium was way too low and they struggled to get it normal. Otherwise he would have been out pretty soon after [Within a few days]
Only trouble with his surgery was it lowered his kidney function even more and he had to start dialysis just a week afterwards. Oh, and they took out part of a lymph node by accident.. :urcrazy;
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Hmm. In Gregory's case they are going to take a lymph node on purpose, I believe, to see if it is cancerous.
Do you know what it was about the operation that affected Mike's kidney function?
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Every dose of anesthetic carries the risk of doing enough damage to lower kidney function some more. Every dose I got with each fistulagram resulted in a slightly smaller output of urine.
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Every dose of anesthetic carries the risk of doing enough damage to lower kidney function some more
That's the one!
Mikes creatinine was 9.0 before the surgery, and after it was 14.0!
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Report: How it went.
Gregory was resplendent in blue foot-bags, see through knickers and two revealing gowns, on his back and being wheeled away by a porter by 7:50am on Thursday morning. We were celebrating because his creatnine was 261, that's a record low for a man whose "grotty old kidney" operates at an average of 300. We were assured there would be no affect on his kidneys from the anesthetics but we'll be sure when we see the next creatnine measure (tomorrow). He re-emerged at about 2pm in a "normal" recovery ward, but by about 4pm renal had found him and whipped him up into their shiny wing on the 6th floor. He is a puker, which is a bad idea when you have a drain hanging out of your throat, but they had that under control by the time I saw him. He got distressed by his sore throat at first, so I took a picture of it and showed him. "There's a bruise here, and the cut is here, and the drain comes out lower down here, see." For some reason he was happy after that. Most likely because the kindly nurse gave him a morphine injection. He said, he felt like there was a huge load off his mind. Like he's walked into a clearing, he said. The part he was pointing to and saying it hurt was actually the big bruise (see picture below).
After that initial distress, he was happy and seemed fairly comfortable for a couple of days, and he could carry his drain bag and go for walks, so we spent a lot of time sitting around in different parts of the hospital. I brought him in a tub of icecream which we stashed in the freezer up in renal, and we made jelly, so he had edible soft foods.
The description of the surgery was that they "got" everything out cleanly, they took out a parathyroid and looked at it and put it back into a muscle, they took out one lymph. His voice is fine so they didn't damage the nerves there. No one has said anything about cancer anymore, and "did you get the cancer out" appears to be a question that can't be answered.
They kept him in hospital for two nights (Thursday, Friday) and let him out Saturday afternoon. They were watching the bleeding, and his calcium levels. In terms of pain, he was a little distressed when he first woke up, but fine after that for the next two days. I wonder if that's about the anesthetic wearing off. The night he came home, he got pretty sore, and after a while stopped talking to rest his throat. He was sore the Saturday night and Sunday. He seems alright today. He has trouble coughing, yawning, and moving his head. I'll post a photo of the area taken the day of the operation (Thursday afternoon).
When they took the drain out, he didn't flinch or make a sound, but he told me later that it did hurt a bit. Not surprising, the drain tube went in about 20cm!!! Where on earth it was draining from is a question I can't get my mind around.
For posterity!
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Great details here, thanks for the report. I hope he heals well! :thumbup; :thumbup; :thumbup;
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glad to hear things went well. kidney function is affected by anesthesia. I was told too, "oh don't worry being put under won't affect your kidney function." when I left the hospital 2 days later I was back in needing to start dialysis...my creatinine was around 4 or 5, then jump up to 10 after surgery.
xo,
R
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Update.
Creatnine is up from 261 to 338, but that might settle back down I hope. Its still in the range of "normal" for him, but I want it back at 260, I liked that number.
But his calcium has gone too low now, its about 2.0 I think. They gave him calcitriol to take. I think what's happening is that he hasn't settled into the new tablet regime and missed taking some of his calcium tablets, and hopefully that's why his calcium is down. Otherwise, they are eyeing off his parathyroids, grrr. He is getting tingly tongue and fingers, which is the calcium we think. And still getting the sore throat at night.
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Report (a week and five days after surgery)
Gregory still finds it painful to yawn and has sore muscles, the ones that run down under his ears. The soreness seems to be up under his ear. He's not complaining though, because we went back to the surgeon today and were told:
- there were no metastases in the lymph they removed (so it hadn't spread there)
- there was a papillary carcinoma in the thyroid and they got the lot
- his calcium is back up in normal range (2.43)
AND (drum roll)
his creatnine is down to 245 (was 329 last week). Considering Gregory's kidney has been chugging away in the 2-300 range for years, that's great news to have it back in the low 200s. And that's the lowest value for Gregory's creatnine that I've ever written down. That's pre-pneumonia creatnine. Last November, his creatnine was 518. So that's great news.
Translations: ( I think...)
518 = 5.9 in US?
329 = 3.7
245 = 2.8
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Update on Gregory's thyroid adventure.
He had his i131 pill on 3/3/11. (Radioactive iodine to remove any vestiges of thyroid). They kept him in hospital for four days. He was fine, didn't have any trouble with the nausea that some people experience. I went to see him each day but they only let me stand at the door for 15 mins and then I had to go again. So we stood on each side of the door with the door closed to chat awhile longer. You could hear through the glass. He went in on the Thursday, and they let him out on the Monday to a form of isolation at home. We have to sleep in separate beds, use separate linen, wash dishes separately, he has to not pat the cats, not hug, no kisses. flush the toilet twice after pees, clean the shower after using it.
I didn't find out about the shower cleaning for a few days so we didn't do that. And I just discovered that we were not cleaning the dishes separately either. A shambles.
When they tested him with a full body scan to test his radioactivity on the Friday (four days after he'd come out of hospital, eight days after he took the tablet) they said, "you're fine, go home, but keep up the isolation for another week". Grrr. Sick of this.
We're both ready for life to get back to normal now. It's Wednesday.... only two more days. Or one, if you look at it another way...
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thanks for the update!
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:grouphug;
I am glad that he is ok.
I just hope that all of this is working :pray;
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Wow, how much Calcium and Vitamin D is he on?
Mike never had a drain, but boy it took MONTHS for his calcium to get to the normal range!! Must have been a shock, years of high calcium and phosphate, for it to all of a sudden drop.
Hope all is going well!! :cuddle;
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He takes two caltrate and two calcitriol tablets a day. I asked him what dose but he's too busy dancing to answer. Silly thing that he is.
He doesn't go around complaining but I have observed the following ongoing side effects:
1. taste is odd, things taste salty, like, water tastes salty; and he can't taste other things, like his chicken in oyster sauce.
2. he is getting really bad pains especially at night: chest pains, stomach pains. They are said to be due to stress still. He woke this morning at 4am and got out of bed awhile waiting for it to subside. And he got it at work today too, but didn't go home because he's run out of leave, has had to use some of his long service leave recently for his radiation adventure.
surely the stress is bereavement related, and it will all go back to normal soon.
ps thanks for the hug ladynoir. give our love to that fellah of yours with the saucy new kidney.
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I don't know how I've missed all of this drama of yours until now!
Wow, you two have been through a lot! Hopefully you're at the tail end of it. When I had chemo and radiation in hospital, they put a giant hazard sign on my door and the doctors had to wear full gear to come talk to me - paper mesh shirt and trousers with elasticated cuffs, mask and gloves. Two weeks after, my surgeon would walk in with these items half on and start muttering that SURELY these precautions were no longer necessary. Everyone else, the sign on the door had the caution triangle, they were taking no chances.
Huge congratulations to Gregory on the low creatinine. Kidneys don't seem to like it when anything goes sideways with one's health, so perhaps his kidney is relieved to have that cancer gone (and why not!). I hope the great numbers keep coming his way. He could go many, many years at 2.8 (245)! Hugs to you both! :grouphug;
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Wow, he's the MAN! :boxing;
Mike was on the most calcium & vitamin D that anyone had ever been at one time in NZ. Was something like 20 of those dissolveable calcium things 3x a day, and 20 Calcitriol 3x a day. Was insane, especially the disolveable ones. Used to make him throw up quite a bit too!
So glad to be hearing updates. You guys keep strong!
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My god ladynoir, that dosage just does my head completely in. How ... could you even get all that calcium down? ??? ??? No wonder there was puking!!! I turned to the girl at the desk next to me and told her about the doses, we're both just going whaaaat??? Her name is suyin. suyin and I are completely gobsmacked.
Hey Cariad! I've still got the bananas dancing about your good news: :bandance; :bandance; :bandance;
Meanwhile, when you say, "He could go many, many years at 2.8 (245)! "... that's the kind of comment I will definately read out to him when I get home tonight.
;)
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And it took MONTHS for his calcium to regulate. He was even on the highest dose of the calcium drip in the hospital for 11 days, completely washed him out, he wasted away to 63kg!
I'm not sure why it took so long. Could have been the fact his bones we so brittle because his PTH was also the highest they had ever seen in NZ. And they were high for over a year & a half. So brittle, that he chipped both hips before they decided to do this surgery!! :urcrazy;