Parathyroidectomy

[kitkatz]

Thank you all for the well wishes.  Victor is doing okay.  He is bright eyed and getting around in his chair okay.  He looks good.  I hope another set back does not come soon. We need a break.

[Zach]

Thank you all for the well wishes.  Victor is doing okay.  He is bright eyed and getting around in his chair okay.  He looks good.  I hope another set back does not come soon. We need a break.

I just wanted to chime in.

Most of us have had some amount of our parathyroid glands removed and are better for that.

High phosphorus can be a real problem leading to soft tissue calcification.
And the Hungry Bone Syndrome that occurs after the surgery must be monitored carefully for low calcium.  But HBS
is good because it adds calcium to our bones.

[angieskidney]

High phosphorus can be a real problem leading to soft tissue calcification.
And the Hungry Bone Syndrome that occurs after the surgery must be monitored carefully for low calcium.  But HBS
is good because it adds calcium to our bones.

What is HBS? I had all my parathyroids removed and keep a watch on my PTH and Phosphate and Calcium because I have seen that Hyperphosphatemia can lead to Calciphylaxis first hand from a girl I went to a kidney symposium with 2 years ago! It was absolutely terrible looking and it nearly killed her!

[Zach]

HBS = Hungry Bone Syndrome

[Python]

Glad I read this thread.  For ages my son's consultant has wanted to remove my son's parathyroid glands - and son has repeatedly said "No".  The right decision I think.

[MiSSis]

I’ve had 4 parathyroid surgeries with each one becoming just a little more difficult than the previous one to recover from.  For some reason, I’m great at growing back parathyroid glands.  Sure wish we could do the same thing with kidneys!  My last surgery was in Sept. 2003 and resulted in my being back on dialysis after almost 16 years with a kidney transplant.  I was pissed to say the least!  Having had 3 previous surgeries, I saw no reason to think I’d have any more difficulties with this one.  But just to be safe, my doctors and I fought with my HMO to get a referral to the University of Iowa where I’d had my previous paratyroidectomies and also my 2 transplants.  I figured I’d be in the best of hands there because they’d have all my records and the transplant staff would also be available to look out for my best interests.  My husband and I had discussed all of this with the surgeon when we went up there for a pre-surgery consultation. 

Because I take coumadin on a regular basis, about a week or so prior to the surgery the surgeon switched me to a shorter acting blood thinner that my husband had to inject me with 3 times daily.  This was to insure that during surgery I wouldn’t lose too much blood.  I don’t have the specific results of what my blood counts were on my day of discharge (the 2nd day after surgery) but I came home and was bedridden for almost a week.  As I started to get up and move around and was able to start eating solid foods again, I started a rapid decline.  Overnight I struggled to breathe and had a terrible ache in my jaw.  In hindsight, I know now what was happening but at the time we were just trying anything to make me comfortable.

 The next morning I contacted my kidney center and asked for their help to try and find out what was wrong.  Thinking maybe my electrolytes were out of balance because I hadn’t been eating well, a BMP was drawn but nothing showed up in those results.  The nurse didn’t like the way I looked (pretty much like death warmed over) and after discussing it with the nephro on call, I was admitted to the hospital.  There they found my hemoglobin level was less than 7; less than half of what it should have been.  Somewhere along with line I’d lost a lot of blood but it hadn’t been detected.  Because of the blood loss, I suffered a fairly significant heart attack.  My heart was so weak I was put on an intra-aortic balloon pump.  This pump continually inflated and deflated a balloon within my aorta for two days, decreasing the work load that my heart had to perform and thereby giving it a rest. 

The stress of all this was just too much and as a result my transplant started to suffer.  I was put on hemo temporarily but was then allowed to discontinue it to see if my transplant would recover as my heart grew stronger.  But after suffering several bouts of congestive heart failure, my doctors informed my husband and I that I needed to make a decision on what type of dialysis I’d like to continue with.  Since “none” was not an option, I went with peritoneal dialysis once again. 

Three years later and I’m starting to have high PTH levels again.  Right now with medication, it seems like it’s being controlled.  But I sure am glad that during my last surgery, the doctor removed everything from my neck area and auto-transplanted a small amount of a parathyroid into my left forearm.  If nothing else, at least I won’t have to go through another major surgery because of the darn things!  

[Black]

Well folks, the parathyroidectomy is being scheduled for around the first of November this year.  I am a little scared and worried, but Id id read about it on line. I have the head surgeon of the department doing the surgery.  he was very nice when I talked to him and answered my questions.  He gave me all of the bad news then said it is usually a month to recover with few days spent in the hopsital.  He says it is not very painful.  We shall see.  I am NOT looking forward to having my throat slit and being operated on again.  Oh well another scar to add to the collection.
  I plan to be back at work the end of November. I have a break from the end of October to the last week of November, then three weeks of work and the Christmas break.

Have you tried Hectorol?  My husband takes it and so far has had no apparent side effects and it worked quickly to bring his levels down.  It's rather expensive but his Neph usually has samples available.   www.hectorol.com  Might be worth a try between now and surgery time.

[kitkatz]

Well it finally happened the doctor noticed the rising PTH levels and fairly uncontrolled phosphorous levels and decided to refer me to a surgeon.   Oh Geez.  Please tell me this is simple and uncomplicated???And it is a quick recovery time with little pain???  Anyway whatever the truth lay it on me.

Katherine

Update Update Update

Tomorrow, October 24 will be my parathyroidectomy at 8a.m.  I had a phone call at 10:30 this morning from the doctors nurse , that said, even though we forgot about you and your surgery for November, how about doing it tomorrow?  I went into frantic mode to get all the work I had to do at school done.  Brought a ton of it home with me.  We go on break on Friday, so I will miss another four days of school after the last three days I missed last week.  Better be good. I have no more sick leave left now. I threw grades together for the trimester.  Wrote plans twice, because the computer ate the first batch of plans I had on it.  Wrote four IEPs, not completely.  Forgot to put goals in one and left things blank and threw them at another teacher. I had a crazy two hours today at work until I left for the preop at 1:15.  And guess who was an hour late to dialysis today, thanks to Kaiser and their system of wait and see?  Oh well.

Just wanted to let the IHD.com family know what is going on, so if I am off line for a week, no worries.  My sister will update you when she can.

[Epoman]

Well it finally happened the doctor noticed the rising PTH levels and fairly uncontrolled phosphorous levels and decided to refer me to a surgeon.   Oh Geez.  Please tell me this is simple and uncomplicated???And it is a quick recovery time with little pain???  Anyway whatever the truth lay it on me.

Katherine

Update Update Update

Tomorrow, October 24 will be my parathyroidectomy at 8a.m.  I had a phone call at 10:30 this morning from the doctors nurse , that said, even though we forgot about you and your surgery for November, how about doing it tomorrow?  I went into frantic mode to get all the work I had to do at school done.  Brought a ton of it home with me.  We go on break on Friday, so I will miss another four days of school after the last three days I missed last week.  Better be good. I have no more sick leave left now. I threw grades together for the trimester.  Wrote plans twice, because the computer ate the first batch of plans I had on it.  Wrote four IEPs, not completely.  Forgot to put goals in one and left things blank and threw them at another teacher. I had a crazy two hours today at work until I left for the preop at 1:15.  And guess who was an hour late to dialysis today, thanks to Kaiser and their system of wait and see?  Oh well.

Just wanted to let the IHD.com family know what is going on, so if I am off line for a week, no worries.  My sister will update you when she can.

Just so you know if the surgery is a success, your PTH will drop immeadiately after surgery. I say if it is a success because you may have more "para's" then they know about. It took TWO surgerys to find all of my "para's" and the second surgery is when they cut my left vocal cord by digging around trying to find them all. Most people have 4 parathyroids, but you can have 5, 6, or more. If you are lucky they will TEST your PTH level to see if it is dropping (there is a special machine they have) WHILE they have you cut open and on the table to see if they got them all.

Also sometimes they take out all the "para's" and they will make a small incision and place a small amount in an area that is easily accessible like your arm, because we need some parathyroid function to live. In my case they did not need to put any back in, they just left a small piece in and FROZE the rest.

Good luck on your surgery and I hope all goes well for you. My PTH used to be 3,500+, then it was 600-900 after the surgery now that I am on NxStage it is down to 350 which I am very happy about. unfortunately it was already to late for me and I am in a wheelchair because of it, all my surgery did was stop any future bone loss or at least slow it down.

[goofynina]

Kit, go get'em Sister,  we are all with you and for you ...

[anja]

Best of luck for a speedy recovery, Kit, will be thinking of you tomorrow, especially!   

[angieskidney]

Hope the surgery goes well! Mine did when I had it! 

[Ohio Buckeye]

Wow, that happened fast.
Thinking of you and hoping all goes well and you have a speedy recovery.

[Black]

Good luck, Kit.  Hope it all goes well.

[Ginger]

Good Luck Kit, thinking of you and hoping for a speedy recovery.  Hope you get compassionate, caring nurses!!!

[Bajanne]

So our superheroine goes off to yet another challenge.   Our caring thoughts are with you all the way.

[kitkatz]

They sent me home today Thursday. I arrived home around 8p.m. Seems t have been a success.  I am sore and on Vicodin for pain and the docs changed all my meds around so now I have to try to    get a handle on it all.  But I am through it now.  More later when I am up to it.

[Black]

Glad you're home  keep us posted 

[kitkatz]

Okay folks. The Vicodin hit, so I do not want to hear about the typos here tonight! Here  is my poor little hospital story for this week.

Monday: Got a call from Dr nurse about them having a cancellation on their books and would I like to have my surgery on Tuesday instead on in midDecember. Well seeing as I have a month off from school starting on Friday, I said okay, but let me see if I can get a sub teacher in today.  So off into panic mode at school. I had two hours to get grades in for the trimester, write plans for four days for my classes, and write four IEP, plus cancel parent teacher conferences.  I worked like a crazy teacher until 1 oclock, then took off for Kaiser for preop stuff.  I told them I had dialysis at three, but I do not think they believed me at Kaiser.  One nurse said: "You know they know how long preop takes...."  I did not have time for her so I slammed her pen down and left for the lab and an EKG.  Anyway I made it from Fontana to RAI in San Bernardino by 4:30 to start 3 hours of dialysis before surgery.

Tuesday: Slept through my alarm or else it did not go off. Woke up to my sister's wake up call. Aren't I picking you up now for surgery?  I let her into the house threw clothes onto my body and packed a little case with essentials.  Was out of the house by 5:30 after getting up at 5:15.  Yes i can move when I have to!
Got to Kaiser at around 6a.m.  Went up to Same Day Admittance and was put into a gown and bed.  Then the nurse tried to get an IV started.  She tried twice and gave up. She was able to hit a small vein in my hand for blood work. They needed a potassium level before surgery.  Then the anesthetist's assistant had a go at starting an IV on me.  He stuck me once and lost the vein, then found on odd spot near the elbow and practically stood on his head putting the IV into my arm.  Weird spot. I could not see it at all.  At least it worked and it was small torture. 
     They took me into surgery and tied me down like Christ on the cross.  Arms out, feet weighed down.  I was just beginning to get claustrophobic about the arms being tied down, when the anesthetist said, okay the meds going to sting.  It did. Then he said think of a happy place.  I went cloud surfing in my mind and out I went. I woke up to to someone telling me to take a deep breath.  I had a beautiful bandage around my neck. and a drain in my neck.  Did not expect the drain, but it did not bother me too much.  I was given Vicodin as painkiller all three days in the hospital.  My blood pressure decided to play go low and stay low after surgery.  Now I am on four different blood pressure meds. Dr. G took me off all but two now. I was in the 90s over 50s for awhile there.  They made me breathe and all the cute stuff after surgery and sent me to my room to recover.  Took awhile since Kaiser never has beds ready when you need them.
     Turns out my sister who brought me to the hospital, had gone to work, then turned around and came back to Kaiser to wait for me.   She met me outsdie the recovery room and handed me my glasses.   My glasses had been the first thing I wanted when I woke up in the recovery room.  The nurses told me they had no idea who had my glasses.  So when Christy just asked me out of the blue if I wanted them I was stunned.  I was also stunned to have her there.  The doctor had called my house to talk to Victor about how the surgery went.  I did not expect anyone to be there at the hospital when I came to my room.  it was nice to have my sister there sitting with me.  She read her books and worked on needle point/canvas stuff while I dozed in and out.
They fed me ice chips and jello in the afternoon and then asked if I wanted a liquid meal or real food. Real food wins out with me.  My poor sore throat ate what they brought me.  Carrots and meatloaf for dinner.  Not bad. Hubby came to see me and had a good laugh over the carrots on the plate.

I sort of slept the night with people barging in and out of the room checking on me constantly.  I had pain, but it was not really bad.  Vicodin could hit most of it away.

I am tired now and cannot see the screen to type anymore.  I will finish this saga, tomorrow morning.  There is more...like when I really get mad...
     

[angieskidney]

Glad you are home Kitkatz! Glad you are doing well!

Then the anesthetist's assistant had a go at starting an IV on me. He stuck me once and lost the vein, then found on odd spot near the elbow and practically stood on his head putting the IV into my arm. Weird spot. I could not see it at all. At least it worked and it was small torture.

Sounds like the same spot they put mine lol

[Rerun]

Great story.  Please continue........

[kitkatz]

So onward with this saga...
Tuesday is sort of a blur for me after surgery.  Wednesday, they brought me an early breakfast at seven thinking I would be a dialysis in the hospital early, but they waited till 2 in the afternoon to take me finally.  They fed me at seven then at 12:30 they tell me they were not going to give me lunch because dialysis is going to call for you.  I said.  No way in heck are you going to give me  breakfast at seven, then wait till after dialysis at six in the evening to feed me again.  My blood pressure will crash and so will my attitude.  So they  changed their minds and let me eat my lunch.  Geez!  Thanks.
So they take me to dialysis where my blood pressure decides to play hide and seek with them.  Low pressure, do not take fluid, but I have fluid on me, take it off, no, no.   The argument went around and around.  I told them to take 3 to 4 kilos because I had it on me, but who knows what I weigh today Friday.  We will see this afternoon.  They gave me Benadryl paired with the Vicdin in the system already and I pretty much slept through dialysis.  Then I am awake and everything is done,Kaiser transportation promptly forgets to come get me and take me to my room.  I was off dialysis at 6:15 and did not get to my room until 8p.m.  Needless to say I was in tears and just wanted my dinner and to go to bed so I could recover.  The Vicodin makes me slightly emotional.  By the time they had me in my bed in my room it was 8 p.m. and I was pissed. (Not that I could do anything but holler about it).
Then I picked up the dinner tray which my hubby says they tried to take away three times, and I find carrots and zucchini squash all mixed together with some kind of mystery meat.  I HATE zucchini and to find it in my meal that was cold and congealing already, put me over the edge.  I damn near threw the tray across the room and burst into tears, the nurse grabbed the dinner and said let me take it.  And took it before I really threw it.  My sister asked the nurse if she could go get me something to eat off grounds and the nurse said feed the woman. I sent Christy to Arbys for a turkey bacon sandwhich.  It took me an hour and a half to eat the sandwhich and it tasted good! And on one told me I could not have it.
A friend of mine showed up to see me and we talked.  Hurt to talk so a lot of silence from me.  Then I tried to sleep and found out I could not sleep in the hopsital.  Vitals being taken and cart racing up and down the hallway.  oh well, read a book and watched TV.  Then the air conditioning kicked on and it was noisy, so oh well, little or no sleep.  They had stopped giving me calcium at dialysis and sometime in the night my IV went bad.  The nurse pulled off the tubing and stopped giving me fluid and said she would call the doctor.  The on- call bozo (doctor) decided I needed the IV and was going to make the nurse redo it.  Well, after all of this time, I told the nurse I refuse to have it.  After all, all they were doing with the IV was giving me fluid and God knew I needed that like I needed a hole in my head.  So when the nurse heard me say No, she wrote it down and left  it alone. 

Thursday: 
They decided my day should start at 5:30a.m., not that it was to be exciting in any way.  They tried to send me down for a chest Xray that was not for me.  My nurse caught the transport guy and said where you going?  Not with her.  She took me back to my room.  At least the nurse was not an idiot.  She listened to me and let me talk to her.  All I wanted was regular Vicodin and leave me alone.  However everytime I tried to sleep someone would walk in wanting something.  I saw the doctor, the social worker, the nurse, the PCA-nurses assistant, then two friends from work showed up to see me.  It was a nice surprise, but hurt to talk to them.  My mom arrived around 11 oclock to visit.  I was not good entertainment for her and she left round 2.  My sister showed up to wait until they were going to let me go. She had rearranged her schedule so she could be there when they let me go.  At two oclock they drew the calcium blood draw for the last time.  The nurse came in and took the useless IV out finally.  It was beginning to really bother me.They finally made decision around 5 that I would go home today.  The doctor came and took the drain out of the neck and removed the staples.  He butterfly taped everything together.
Christy was there and took me in the wheelchair to the pharmacy, which promptly had no prescriptions ready for me yet.  So an hour wait in the pharmacy for prescriptions.  And they forgot to get a pharmacist to come and tell me about the meds at the counter.  How convenient they are!
Finally in the car on the way home...

Notes:
They changed my meds all around. now I take less. No sensipar or hectoral, taking calcium tablets, TUMS four times a day now.  Added Rocitrol (Sp)  to the list.  Changed my BP meds all around to lower doses.  We shall see how this all works out.  Took me off cozaar and minoxidil, and left the plendil and atenolol.  Took me an hour this morning to sort it all out and get a week's worth of pills into the container.  Woo hoo!

Friday:  I feel okay. No pain pill yet, but the throat is sore and I am a little grumpy.  Going to have the hubby's CNA see if she can help me wash my hair today.  Pretty much hurts a little to move.
Well there it is the long saga of a parathyroidectomy.  I survived it They seemed to think I recovered pretty quickly afterwords. 

Thanks for your prayers and thoughts.

[jbeany]

Whew!  Glad you made it through all that, kitkatz!

bajanne, I've got my lab targets from the Kidney School site posted here in front of me.  It says PTH levels are supposed to be 150-300 pg/mL for a target range for people on dialysis.  10 to 65 is normal for healthy people.

[mallory]

Glad you're home and it sounds like you're doing well.  We're thinking of you!!

[Rerun]

I hate hospitals.  The food the treatment....no one listens to me.  I'm glad you made it out.