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Author Topic: My parathyroid gland removal (Parathyroidectomy) to address high PTH and Calcium  (Read 614 times)
iolaire
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« on: August 17, 2018, 08:03:10 AM »

Eight days ago I went in to the hospital for surgery to remove enlarged parathyroid glands.  My PTH has been high (170 @ 30 mg of Sensipar/127 @ 60 mg of Sensipar /132 @ 90 mg of Sensipar) since my time on dialysis and calcium has been high as well (most recently just over 10 mg/dL usually just over the level of high).

The surgeon said he would remove 3 of the 4 glands based on looking at the ultrasounds.  Its about 90 minute procedure but they would want me in the hospital afterwards to monitor calcium levels and make sure they donít collapse too much as the good glands decrease the PTH.  Sometimes they only keep part of gland or transplant part into the arm to keep function up.  Because of that I asked him to keep as much as possible because Iíll probably have dialysis again and need something left for later.

They would go in and remove glands and do PTH tests in real time and they will see the PTH drop as the enlarged glands are removed.

My surgery was at 7:30 am, arrival two hours before.  They gave me an opioid pill as I was prepped and I donít remember much as I was moved from the preparation area down to the surgery area but at some point they would have knocked me out.  I do recall waking in pain in the recovery area and requested more of the IV pain medicine, by 10:38 I was awake and from that point forward only had Tylenol.  The people in the recover area warned me if I had pain to request it well still in that area because once I got a hospital bed I could not get the good pain medicine.  Was able to order lunch, seeing me eating was a good sign to everyone as it meant my throat area was non hugely sensitive.

Surgeon said everything went well. They removed two glands and part of the third, and left the fourth even though it was partially enlarged.  He showed me a photo of the glands that were removed and two where huge as compared to the small part of the third.  The cut was 2-3 inches, he said they had to open me up 2-3 cm more than normal so they could get a good look at the glands.  The glands are small so they donít really know what they are working with until they can see them.  The cut was glued closed and looks sort of nasty because the black marker for the cutting area shows up.  The cut is glued closed, instructions were that I could shower as soon as I get home, let water run over glued area, after a week start putting Vaseline on the area three times per day so it doesnít crust up for six months (I assume this is a cosmetic instruction for a less noticeable scar) and use sunscreen.

Was moved up a bed at 6 PM, eight hours after being moved to the recovery area.  All the waiting sucks.  Was moved to a high fall risk floor so I could not go to the bathroom without requesting bed alarms to be removed despite being highly mobile at that time.  For dinner my options were limited as someone put me on a Kidney diet!  I donít miss those Kidney dietsÖ  PTH was good, and they were testing calcium every six hours.  At about 7:30 am they came by and said they would put in my discharge orders and I could leave 8:30 or 10 am.  By 11:27 I was actually close to discharge.  Discharge paperwork included opioid prescription but the pain level was low so I never considered needing more pain medicine.

PTH is now at 83 (which is still past high point), and calcium is down to 9.8 which is in good range, and they have me now taking 500 mg of calcium (Tums) per day.  I took some Tylenol for the first two days and returned to work on Monday (Surgery was Thursday).

Iím a bit surprised how not painful the recovery was.  Within 3 hours after surgery only Tylenol was needed.  Some of the glue is starting to pull off the edige of the cut.  I expect by Tuesday when I see the surgeon it will be ready to be removed completely.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #1 on: August 17, 2018, 11:30:43 AM »

Oooooh!  Full service with photos!  Cool!   :2thumbsup;

Why were you moved to a "high fall risk" floor?  I never knew there was such a thing.

When do you next have labs?

Do your docs believe this surgery will pretty much solve your PTH/calcium problem, along with the Tums?  Are you pretty confident?

I know that surgery is the last resort, so I'm glad you've got it over with and that you seem to be doing well.  I hope this particular problem is now done and dusted!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: August 17, 2018, 12:54:50 PM »

So glad to hear you are doing well Iolaire


   :cheer:


Lots of love, luck, and healing, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
iolaire
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« Reply #3 on: August 17, 2018, 01:09:33 PM »

Oooooh!  Full service with photos!  Cool!   :2thumbsup;

Why were you moved to a "high fall risk" floor?  I never knew there was such a thing.

When do you next have labs?

I know that surgery is the last resort, so I'm glad you've got it over with and that you seem to be doing well.  I hope this particular problem is now done and dusted!
I asked to take a photo of the pictures on his phone and he said ok then other doctors showed up and he said "they" would send it to me.  I hope when I see him he will still get me the photo.  (I also might ask if he has pictures of the operation as well for me to see).  I hope his hesitation once other doctors showed up doesn't mean I can not see them again.

What I mean is the only open bed after waiting a long time was a high risk floor, for people with strokes and such that might be temporarily mobility challenged and at risk for falls.  I think that is what was available - not that I needed it.  There has been a long wait for beds each time I've had a quick scheduled hospital stay after biopsy or this. The beds have alarms on them and if you sit on the side of the bed the whole room goes wild with flashes and loud alarms, it happened once for me and once for a nurse who said she was ready for me to get up.  If I wanted to sit up they could have moved the alarm to a chair.  They did leave the alarm off but then I didn't know if someone other than my nurse/tech had turned it back on - after it going off once I just called them. 


I got labs on Monday 5 days after and will get them again next week.

So the surgary being last resort - it seems like a fairly harmless one - the common side effect is sore throat from the breathing tube - main worry is a nick to the vocal box affecting speech tone.  Worst case is if you had no parathyroid glands is you would need to take a lot of calcium and maybe a mineral or two in addition.  So the goal is to decrease calcium and stop the risk of it being removed from bones.  I think taking calcium now is to insure the body has a source of calcium (other than the bones) and should the calcium crash lower than expected it would also help supplement that.

Someone mentioned I should be fine as most of the people the operate on have had the problem for a long time, might be larger physically, and the body might not know how to respond to normal PTH levels, thus it might go wild trying to remove calcium like its been doing for years.  In that case they might need to give IV calcium and that would require the patient to be moved to the ICU,
« Last Edit: August 17, 2018, 02:34:12 PM by iolaire » Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #4 on: August 17, 2018, 01:34:22 PM »

If you DO get that photo, I wouldn't mind seeing it if you are able to post it.  I'd like to see the difference between a normal gland and a "huge" one.

Thanks for the clarification about being on the high fall risk floor.  I figured that bed availability was the reason as, like you've said, the surgery itself is not usually fraught with complications.  I would like to see surgery being always the last resort, but thinking about it, I suppose there are always risks with medication, too. 

The interplay between pth and calcium is an interesting one.  We renal patients really do have to become biochemists.  When we explain it to "normal" people, we sure sound smart!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
iolaire
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« Reply #5 on: August 21, 2018, 07:33:27 AM »

Sp1  1.4g, 2 x 1.6 x 0.9 cm (he said this was very large)
Sp2 0.4g, 1.7 x 1 x 0.5 cm
Sp3 0.3g, 1.1 x 0.8 x 0.5 cm (this was entire gland, I thought he left part but he did not)

Diagnosis: Parathyroid Adenoma
Procedure Parathyroidectomy with Intraoperative PT

Didn't ask about the normal one, but he said he marked some place with a nick as to where it was enlarged (so the next person has a reference) and didn't cut into the sack to get a full visual.
« Last Edit: August 22, 2018, 12:49:42 PM by iolaire » Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
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« Reply #6 on: August 21, 2018, 12:58:03 PM »

Oh, wow!  He's right!  SP1 IS very large!  Those are amazing photos; thank you for posting them.  I'm glad "they" were able to give them to you.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
SooMK
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« Reply #7 on: August 22, 2018, 12:29:59 PM »

Glad this is all behind you. Very interesting. Nice to have pics.
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SooMK
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KatieV
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« Reply #8 on: August 31, 2018, 09:26:38 AM »

My husband had one of his parathyroid glands out a few months ago.  We initially discovered the issue when he was disqualified from donating a kidney to me because of high calcium.  When he went to his primary for follow-up, I told him to ask that his PTH level be checked - it was 300!  It was an out-patient procedure for him.  He also had a "nose job" during the same surgery to correct his deviated septum.  His recovery wasn't as easy as yours.  The PTH level responded really well during surgery, but has come up a bunch since.  They are keeping a close eye on his levels.

I will mention the Vaseline tip to him! 
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
iolaire
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« Reply #9 on: August 31, 2018, 10:17:48 AM »

His recovery wasn't as easy as yours.  The PTH level responded really well during surgery, but has come up a bunch since.  They are keeping a close eye on his levels.

I will mention the Vaseline tip to him!

That's too bad it wasn't easy.   I feel blessed (no religiously more like thankful/appreciative) that generally for watherver reason I handel the various medical things fairly easily.

Does he have more glands left? (i.e. are some of the one's left still bad?)

Speaking of Vaseline on my follow-up visit he said to put Vaseline on it and massage it so the surgery line goes down.  Mine was a long large bump, it felt like 1/4 inch bump but that's probably a huge exaggeration.  He said there was a lot of liquid in that area that you want to massage back into the bod and the scar will go down nicely and not be visible.

I don't really know how to massage a scar but I do push and prod it and make cirular motions and it does seem like its going down a bit.  I do wonder if the scar area that is hard is just a liquid sack in there.
« Last Edit: August 31, 2018, 10:20:03 AM by iolaire » Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
KatieV
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« Reply #10 on: August 31, 2018, 10:23:01 AM »

That's too bad it wasn't easy.   I feel blessed (no religiously more like thankful/appreciative) that generally for watherver reason I handel the various medical things fairly easily.

Does he have more glands left? (i.e. are some of the one's left still bad?)

According to the MRI or ultrasound, only one gland was enlarged.
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Aaisha.Dar
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« Reply #11 on: December 08, 2018, 07:46:34 PM »

I got my parathyroids taken out I believe back in 2016. I read you only had tylenol!!! They had morphine hooked to me so I didnt feel much pain. Having surgery especially in the neck area is very sensitive Im sure you were in a lot of pain and I feel so bad!! But im glad in the end it controlled your levels.
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iolaire
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« Reply #12 on: December 09, 2018, 10:04:41 AM »

I got my parathyroids taken out I believe back in 2016. I read you only had tylenol!!! They had morphine hooked to me so I didnt feel much pain. Having surgery especially in the neck area is very sensitive Im sure you were in a lot of pain and I feel so bad!! But im glad in the end it controlled your levels.
When I say Tylenol only thatís after Iím fully awake, before that they have me knocked out.

But yes wounder sometimes why each time they give me an oxcodine prescription why I donít it but others do.   
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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