Parathyroidectomy

[goofynina]

Heya Kit,  I am so glad all that is over and you are doing well,   sorry for all that you had to go through though,   take it easy these next couple of days 

[glitter]

Wow-I just read your ordeal-i hope things are going okay for you.

Is this surgery something all dialysis people will have eventually? How many years into dialysis does this occur 1 or 2,5 or 10?

[Epoman]

Wow-I just read your ordeal-i hope things are going okay for you.

Is this surgery something all dialysis people will have eventually? How many years into dialysis does this occur 1 or 2,5 or 10?

NO, not all people will have this surgery, as long as you maintain a good PTH level which is about under 300 is acceptable, that number is still above normal but it is accepted by many as an acceptable number. I had mine taken out after I had broken both my hips within a one week period and had a PTH of 3,500+ which is VERY, VERY bad. By the time I broke my hips I was already suffering from very bad calcium deposits all over my body. I sometimes had to use crutches to even walk. I used to get steroid shots to get rid of the deposits, until I finally met a very wise doctor who told me to just take Motrin 800mg 4 times a day until the pain went away, and you know what it WORKED. The pain went away by the second pill. When you get a calcium deposit in your joints it's like someone is STABBING you and it is VERY painful. Motrin was my miracle drug for a while. Now a days I don't get calcium deposits anymore becasuse my PTH is stable at about 350. It was 700 before I started NxStage. Read my BIO in the introductions sections to hear more about my story.

[kitkatz]

My PTH has been as high as 1800 or higher.  I did not track it, just kept an eye on it through the once a month levels I get back from the center.  Everything is a balancing act when you are on dialysis.  My bones were stating to hurt, shoulders and neck area especially on a regular basis.  The dentist told me there had been a lot bone loss in the mouth area.   It was time to take care of it, or face possible repercussions later on. After reading Epoman's story I knew I wanted to take care of it sooner than later.  So thank you to him for good advice.

Feel like I have had my throat slit.  What fun!

[Epoman]

My PTH has been as high as 1800 or higher.  I did not track it, just kept an eye on it through the once a month levels I get back from the center.  Everything is a balancing act when you are on dialysis.  My bones were stating to hurt, shoulders and neck area especially on a regular basis.  The dentist told me there had been a lot bone loss in the mouth area.   It was time to take care of it, or face possible repercussions later on. After reading Epoman's story I knew I wanted to take care of it sooner than later.  So thank you to him for good advice.

Feel like I have had my throat slit.  What fun!

Kitkatz, did I miss it or did you not state what your NEW PTH levels are. Please don't tell you don't know, they should have TOLD you right after surgery, since that is the only way to know if the surgery was a success.

[kitkatz]

I really do not know.  I did not ask.  They were more worried about the calcium level than anything else.  I assumed it went down.

[Epoman]

I really do not know.  I did not ask.  They were more worried about the calcium level than anything else.  I assumed it went down.

Well if your calcium dropped that is a good sign but not always. But I am surprised they did not tell you.  I mean that was the GOAL of the surgery, to lower your PTH. I just hope they got them all, I needed a second surgery and I lost my left vocal cord because of it. When they cut you open the first time, the risk of them damaging your vocal cords is LOW, but the second time they have to cut you open, the risk increases a lot more.

[angieskidney]

I really do not know.  I did not ask.  They were more worried about the calcium level than anything else.  I assumed it went down.

Well if your calcium dropped that is a good sign but not always. But I am surprised they did not tell you.  I mean that was the GOAL of the surgery, to lower your PTH. I just hope they got them all, I needed a second surgery and I lost my left vocal cord because of it. When they cut you open the first time, the risk of them damaging your vocal cords is LOW, but the second time they have to cut you open, the risk increases a lot more.

Wow I didn't know the 2nd time is what increases that risk

[kitkatz]

He whomped up a lymph node that was running around where it was not supposed to be in there. Took it out too.  So we shall see.  He said he got three and a half out of the four he found there.  They were swollen as he expected. He left half of the one that looked the most normal, less swelling. We shall see how it goes from here.  The scar itches today more than hurts.  Plus I have a headache and am watching the blood pressure.  I have been from 184/90 down to 158/93.  Added another Plendil to my routine at night.  Keeping and eye on it then call the doctor on Monday and ask some silly questions about it.

[angieskidney]

He whomped up a lymph node that was running around where it was not supposed to be in there. Took it out too.  So we shall see.  He said he got three and a half out of the four he found there.  They were swollen as he expected. He left half of the one that looked the most normal, less swelling. We shall see how it goes from here.  The scar itches today more than hurts.  Plus I have a headache and am watching the blood pressure.  I have been from 184/90 down to 158/93.  Added another Plendil to my routine at night.  Keeping and eye on it then call the doctor on Monday and ask some silly questions about it.

I had read a study once that said that it is advisable to NOT take out ALL .. so leaving 1/2 in is common amonst some of the surgeons. Wait and see and hope all is well! Good luck! 

[Epoman]

He whomped up a lymph node that was running around where it was not supposed to be in there. Took it out too.  So we shall see.  He said he got three and a half out of the four he found there.  They were swollen as he expected. He left half of the one that looked the most normal, less swelling. We shall see how it goes from here.  The scar itches today more than hurts.  Plus I have a headache and am watching the blood pressure.  I have been from 184/90 down to 158/93.  Added another Plendil to my routine at night.  Keeping and eye on it then call the doctor on Monday and ask some silly questions about it.

I had read a study once that said that it is advisable to NOT take out ALL .. so leaving 1/2 in is common amonst some of the surgeons. Wait and see and hope all is well! Good luck! 

Yes it is definately NOT advisable to remove every last bit, as you would not be able to function, as they control our nervous and muscular systems by regulating the calcium in our bodies.

[angieskidney]

He whomped up a lymph node that was running around where it was not supposed to be in there. Took it out too.  So we shall see.  He said he got three and a half out of the four he found there.  They were swollen as he expected. He left half of the one that looked the most normal, less swelling. We shall see how it goes from here.  The scar itches today more than hurts.  Plus I have a headache and am watching the blood pressure.  I have been from 184/90 down to 158/93.  Added another Plendil to my routine at night.  Keeping and eye on it then call the doctor on Monday and ask some silly questions about it.

I had read a study once that said that it is advisable to NOT take out ALL .. so leaving 1/2 in is common amonst some of the surgeons. Wait and see and hope all is well! Good luck! 

Yes it is definately NOT advisable to remove every last bit, as you would not be able to function, as they control our nervous and muscular systems by regulating the calcium in our bodies.

Are you SURE about that? I mean they removed all 4 of mine. They sit on the Thyroid. I was told they took ALL mine out that sit there.

[geoffcamp]

when I had my parathyroidectomy they took all of them out and implanted one in my arm and then when my calcium was not coming back up they went and implanted another in my arm (two really nice scars!).  I was told that you still need them to control calcium too.
Geoff

[angieskidney]

when I had my parathyroidectomy they took all of them out and implanted one in my arm and then when my calcium was not coming back up they went and implanted another in my arm (two really nice scars!).  I was told that you still need them to control calcium too.
Geoff

They never implanted any in my arms

[Epoman]

He whomped up a lymph node that was running around where it was not supposed to be in there. Took it out too.  So we shall see.  He said he got three and a half out of the four he found there.  They were swollen as he expected. He left half of the one that looked the most normal, less swelling. We shall see how it goes from here.  The scar itches today more than hurts.  Plus I have a headache and am watching the blood pressure.  I have been from 184/90 down to 158/93.  Added another Plendil to my routine at night.  Keeping and eye on it then call the doctor on Monday and ask some silly questions about it.

I had read a study once that said that it is advisable to NOT take out ALL .. so leaving 1/2 in is common amonst some of the surgeons. Wait and see and hope all is well! Good luck! 

Yes it is definately NOT advisable to remove every last bit, as you would not be able to function, as they control our nervous and muscular systems by regulating the calcium in our bodies.

Are you SURE about that? I mean they removed all 4 of mine. They sit on the Thyroid. I was told they took ALL mine out that sit there.

Yes, they may have took 4 out but that doesn't mean you don't have anymore. Some people can have up to 8. The left side parathyroids can drop down into your chest. Or Maybe they took out 4 but left a little piece of one them still inside. I thought you and I already discussed this in another thread (or was it this one) If you don't believe me, feel free to ask your doctor the next time you see him/her. 



Also about the "implant" in the arm thing, yes that is done sometimes, but not always, if they know you have "extra" parathyroids. They know which parathyroids are causing the problems because they are abnormal in size. They should be the size of a grain of rice. One of mine was the size of a golfball. When they remove your parathyroids they "FREEZE" them because they may need to put some back in, that is the reason they usually put a piece back in your arm so they do not have to go back in your throat which is associated with more surgical risks.

[kitkatz]

You guys scare me sometimes!  Everything you have been through! Geez!  Plus all of the medical information you know.  *Ducks head* 

I am feeling okay today. The throat is still sore but bearable and the neck is itching like crazy.  Took a shower this morning and finally got most of the hospital gunk off of me finally.  I am trying to stay off of the Vicodin now and use Tylenol. The Vicodin gives me very weirded out dreams and I am grouchy on it. I am trying to get back to  usual sparkling self.

[kitkatz]

I am feeling better.  Everyone seems surprised I am up and at 'em so quickly.  I feel fine.  The taste of food finally went from grey colored to full colored Thursday night.  I could taste things, but it was like ah, just food.  The carne asada tacos I had Thursday night tasted soooo good! I had not realized I had even had a taste problem until it all came back. I have lost about four pounds over the last two weeks from not wanting to eat.  The tummy seems to say no more, that is it.  And I have learned to stop eating when it says to.  Otherwise I am in misery all day long. I am at 89 kilos down from 91.  I have to remember to challenge the dry wight other wise I will go home heavy. What a way to lose weight. 
    I took the tape off of the neck yesterday. It was driving me nuts.  I will try to get a picture of the scar to show you all.  The neck is still a little swollen.  I see the surgeon in another month.
I have no results on calcium, PTH, or phosphorus yet.  It is strange noone wants to monitor it. I may have to kick up fuss and have dialysis do it next week.

[kitkatz]

Have a few pics of my new scar on my neck from the surgery eleven days ago!!!
Yes, I had my throat slit and resewn. Isn't it lovely. I should tattoo diamonds to it so I always have a necklace ready to go. LOl!

[Black]

Looks pretty good for just 11 days.  Either they were really neat, or you heal fast.  My thyroid scar was much worse -- but it has faded now to where it's hard to find.  Of course, maybe it's because I'm older now and it just looks like another wrinkle

[kitkatz]

I overdid it Saturday and rested yesterday, however here it is three in the morning and I am aching.  I had a cup of chamomile tea to help the sore throat and have my hot pack- microwave- thingy on my neck and shoulders.  I think my shoulders are a ball of muscle from me shrinking into my neck to protect the area.  Also the stop the pain from being too bad after surgery.  I am around thirteen days post op now.
     Also I cleaned my house Saturday.  Got up with a headache and took two Excedrin (yes, I know a no, no, but the only pain killer that will work the migraine I was about to have.), layed down for an hour, then got up and went on a whirlwind cleaning spree.  Cleaned the kitchen counters, did some dishes, vacuumed and mopped the floor.  Then dusted the livingroom, moved some boxes, got rid of some stuff, reorganized the paintings/prints on the fireplace, had help moving the coffee table;e (sister actually moved it for me).  Then I moved a very icky cat box and found (you do not want to know what I found!).  Cleaned that mess up swearing at my cats the entire time.  Put vinegar down on the area, then mopped the hell out of the living room floor.  Then down the hallway I went with clean mop and water with simple green. I would vacuum, then mop.  I cleaned out part of the mess in my office,too.
      I know I overdid it!  I even called my Mom and told her I was overdoing it.  A cry for help. She told me there is always tomorrow and to stop.  Hahahaha! Not the way my brain works. My sister came to get me out of the house for lunch. I went with the hubby and sister to lunch, then finished dealing with what I had started: the vacuuming and mopping.
      So anyway the house is clean, but I am worn out.   I rested yesterday.  I now have aches and pains I know are from the house cleaning work I did.  Stupid, stupid STUPID!  I am crazy! 

[anja]

Poor Kit, great to have the house clean, but at what expense???  Sure hope the aches and pains subside quickly and you are back to your ole' happy self!  Hope you don't cause extra scar tissue, so you better rest now and thank your family for trying to keep you out of harm's way...   Sometime we just don't do what we know is best for ourselves, do we?   I am also guilty.   Best of luck for quick healing and full recovery!   (the housework ALWAYS waits for us---don't know why those gremlins don't take care of it!-huuumpf! )  Next month at this time this will all be a vague memory...or maybe not...  Take care, Anja

[kitkatz]

Okay folks I have my blood work back- 1st one after surgery.  Hot damn looks pretty good! 

Albumin 4.5
Calcium 9.2
Phosphorous 3.8
Parathyroid hormone 24.6
Potassium 4.4
Hemoglobin 11.7
Iron saturation 23
KT/V 1.73

Look at the phosphorous!  It has never been that low! Over the last two years it has been between 6 and 7 regularly!
I eat pretty much what I want to eat and watch the high potassium and phosphorous things.

[tubes]

nice labs kit. 
Had my parathyroidectomy aug. 1st of 01.  It sucked I tell ya.  I was in the hospital 10 days afterwards.  I had continuous I.V. drips and numerous I.V.'s.  They had to change my I.V. just about everyday.  My veins kept blowing out.  It was a very painful experience.  I dont ever want to go through that again.  Except my nurse told me a few months ago my levels were rising again.  *sigh*  But I havent heard anything since then.  *keeping my fingers crossed*

[Zach]

Okay folks I have my blood work back- 1st one after surgery.  Hot damn looks pretty good! 

Albumin 4.5
Calcium 9.2
Phosphorous 3.8
Parathyroid hormone 24.6
Potassium 4.4
Hemoglobin 11.7
Iron saturation 23
KT/V 1.73

Look at the phosphorous!  It has never been that low! Over the last two years it has been between 6 and 7 regularly!
I eat pretty much what I want to eat and watch the high potassium and phosphorous things.

Congrats on all those numbers!!!
 

[Bajanne]

 
Our superheroine leaps those tests in one jump!!!