I Hate Dialysis Message Board

Off-Topic => Off-Topic: Talk about anything you want. => Topic started by: Falkenbach on June 28, 2008, 04:24:08 PM

Title: Hyperparathyroid
Post by: Falkenbach on June 28, 2008, 04:24:08 PM
I have hyperparathyroidism and need surgery. I am on the dreaded public health system waiting list. And about half of the state's anaesthetists have recently resigned (still in talks with the government about pay rises, tho last night's news stories sounded promising) - so who knows how long I will be waiting?

I've got major problems with feeling extremely lethargic, and my joint problems (originally blamed on Cyclosporin, which I have now been off for about 9 months) are giving me hell. We think the surgery might help these problems.

In the meantime, I have to have a CT scan. They tried to get me into the machine last week for the scan, and good ol' claustrophobic me just couldn't do it. Again. I am returning tomorrow with my husband, and have to be sedated before the procedure. I am extremely anxious about this.

*sigh* these are little things really, but I've had a gutful this last year or two and I want a break.  :(
Title: Re: Hyperparathyroid
Post by: charee on June 28, 2008, 04:33:55 PM
hang in there Louise, at least if they sedate you it will be over before you know it be thinking about you :cuddle;
Title: Re: Hyperparathyroid
Post by: monrein on June 28, 2008, 04:35:34 PM
I can't really help Louise but I am sending you a hug or two and my most calming thoughts for tomorrow.  I know it's easier said than done but try to let go and relax, take the sedation and think of beaches or waves or anything that you find soothing.  

I want a break for you too and I am keeping everything crossed that you get one soon.
Love  Gail
Title: Re: Hyperparathyroid
Post by: flip on June 28, 2008, 04:56:58 PM
This operation is fairly common for the patients at my dialysis center. They are usually back in no time and feeling much better. Good luck, Louise.
Title: Re: Hyperparathyroid
Post by: Falkenbach on June 29, 2008, 01:26:33 AM
Thanks everyone. I think the reason I'm miserable is because firstly, I will have to wait probably quite some time to even get the surgery. Secondly, I have to have another central line (this time to pump calcium through my system) - at the time of my transplant last year, they inserted my central line the night before surgery with only a local anaesthetic that didn't seem to work and it was one of the most traumatic experiences of my life! I have told the Docs that this time it it WILL be done when I am under general. Thirdly, they are talking about keeping my in hospital for a week - a few days for pumping through calcium, and some more days for supervision in the renal ward.

I get extraordinarily depressed in hospital (probably everybody does). A week feels like a month. And I MISS MY DOGS.
Title: Re: Hyperparathyroid
Post by: Bajanne on June 29, 2008, 02:22:10 AM
Dearest Louise, I feel your discomfort with this situation.  :cuddle;  Be assured that my caring thoughts and prayers as well as the entire IHD family, are with you through this time.  :grouphug;  You will get through this and we will be with you all the way.
Title: Re: Hyperparathyroid
Post by: Falkenbach on June 29, 2008, 05:52:20 AM
Thanks. I know I'll get through it and hopefully I'll also feel super better for it.
Title: Re: Hyperparathyroid
Post by: RichardMEL on June 29, 2008, 06:07:21 AM
Besi of luck Louise.. even with just getting through the CT scan... hopefully once you are sedated you will be OK... *hugs*

Could sensipar not help you in this situation? I'm glad I've staved off the operation for now!!!

Fingers crossed for you!
Title: Re: Hyperparathyroid
Post by: Romona on June 29, 2008, 07:04:43 PM
 :cuddle; I hope everything goes smoothly.
Title: Re: Hyperparathyroid
Post by: MyRenalRomance on August 02, 2008, 12:28:10 AM
Good luck to you, and hope all goes extremely well.  :cuddle;

This thread caught my eye because I have been told I have Secondary Hyperparathyroidism. 

Anyways - my thoughts and good wishes are with you!
Title: Re: Hyperparathyroid
Post by: Falkenbach on September 28, 2008, 03:09:18 AM
Gosh, have I been away from this forum for a long time. No reason, I'm just slack and naughty, and trying to keep up with my other forums (re music, dogs, cooking etc!) as well as work.

I had my hyperparathyroidectomy about 2 weeks ago. The surgery was not painful (after the initial day of recovery) and it is stitched internally, so neat you can hardly see the wound at all.

Luckily, they didn't give me a central line at all, but a PICC line. This was fine, but when it came out it caused a clot in my arm which has been extremely painful until the last couple of days, and forced me to have an extra week off work.

Sadly, the joint problems haven't gone away. The surgeon seemed very surprised by this, he was very confident they would just disappear. *sigh*

Oh well. I am doing pretty well and don't have much to complain about (not that THAT has ever stopped me  :rofl; )
Title: Re: Hyperparathyroid
Post by: pelagia on September 28, 2008, 06:48:36 AM
I am glad to hear that you are on the mend.

I don't know if this could work for you, but thought I'd mention it.  You can ask your doc.  I have arthritis problems and my doc recommended taking glucosamine.  He said "for about 50% of people it works like a miracle drug."  It's working for me.  I also take calcium, magnesium and omega 3 fatty acids (fish oil am and flax pm).
Title: Re: Hyperparathyroid
Post by: Zach on September 28, 2008, 10:00:35 AM

I don't know if this could work for you, but thought I'd mention it.  You can ask your doc.  I have arthritis problems and my doc recommended taking glucosamine.  He said "for about 50% of people it works like a miracle drug."  It's working for me.  I also take calcium, magnesium and omega 3 fatty acids (fish oil am and flax pm).


Dialysis patients always need to be aware of the possible overdose of some of these supplements because they can build up in our bodies between treatments.

8)
Title: Re: Hyperparathyroid
Post by: pelagia on September 28, 2008, 10:07:56 AM
absolutely be sure to ask doc before adding any kind of supplement!
Title: Re: Hyperparathyroid
Post by: charee on September 28, 2008, 01:51:45 PM
good to see you back louise , hope your feeling better take care :flower;
Title: Re: Hyperparathyroid
Post by: Falkenbach on September 28, 2008, 03:51:25 PM
Thanks everyone.

My doctors actually have me on calcium and magnesium (I am a tx patient, not dialysis). The surgery removed 3.5 of the 4 parathyroid glands, so I suspect I will be on some kind of calcium long term, if not for good.

I have tried both fish oil and glucosamine for my joint pain in the past, but to no avail  >:( - I might consider some physio to help me back on track.

I just want to get exercising again. Which I'm sure I will!