Hello guys, been here before

[humble4c]

Hello guys I'm actually not that new to this site. Been following the site and reading posts for about 5 years.

Been dialysis for years. Over 10 years or there about and I hate to talk about it, but seeing that you guys provide a lot of information I decided to join. Been on the transplant waiting for that length and because of antibody issue and blood type, my docs said I will have to wait longer.

Yes yes dialysis is hell on earth and I don't wish any of you should go through it. It's like being sentenced to jail and taking away one's freedom.

My biggest headache so far is not even the fluid retention, but hypercalcemia and high PTH. For the past few months it's been hard to bring my calcium down. I can only tolerate 1 30mg tablet of cinacalcet [or sensipar or mimpara, whatever else they call it] a day. If I take 2, I get severe irregular heartbeats. I tell my neph about my negative symptoms and they stubbornly disbelief that cinacalcet is giving me issues. they tell me that nothing else can be done. Of course I know I can have surgery to remove some my parathyroid glands.

I want it removed because when my calcium gets elevated i don't feel really good at all, but my docs don't seem to care
if I'm haviing  a severe allergy to a drug must I continue to take it?

By the way guys, you can call me John. i guess I'd better focus on introducing myself first.
I reside in Italy
Nice to meet you all!

[iolaire]

Welcome to the group.

[Simon Dog]

In my opinion, they wait FAR too long to send patients for a subtotal parathyroidectomy.  For me it was 2 years post xplant and the PTH dropped like a rock.  Too bad they waited until my bone density decreased.   The surgeon who did the work told me "Once they get 1cm or bigger, they never shrink back after you get the transplant".    I was on 90 sensipar and still had 500ish pth.  Within a day of surgery that came down to a bit under 50.

I never found it hell on earth, in large part because my doc supported my desire for the DIY plan.  When the hiring manager at my current employer (a large PC company with a 4 letter name) ask what I was doing during my 3 year gap before applying and I told him I was running a very small dialysis clinic.

Italy has a pretty decent reputation for dialysis.  Here in the US clinics do not generally have an MD on duty.

[SooMK]

Welcome John!

[humble4c]

Thanks everyone

[humble4c]

In my opinion, they wait FAR too long to send patients for a subtotal parathyroidectomy.  For me it was 2 years post xplant and the PTH dropped like a rock.  Too bad they waited until my bone density decreased.   The surgeon who did the work told me "Once they get 1cm or bigger, they never shrink back after you get the transplant".    I was on 90 sensipar and still had 500ish pth.  Within a day of surgery that came down to a bit under 50.

I never found it hell on earth, in large part because my doc supported my desire for the DIY plan.  When the hiring manager at my current employer (a large PC company with a 4 letter name) ask what I was doing during my 3 year gap before applying and I told him I was running a very small dialysis clinic.

Italy has a pretty decent reputation for dialysis.  Here in the US clinics do not generally have an MD on duty.

Simon my issue is this
What if I have some of my parathyroid hormone taken out?
Will there be issues after a Kidney transplant?
Will I need to take certain drugs to fix it afterwards for the rest of my life?
Anyone know anything about this?
Thanks

[Simon Dog]

Taking parathyroid hormone out would be quite a trick.   They take out some (often 3/4) of the parathyroid glands.  The removal is the fix; the goal is to get pth into a normal range without drugs.   You should consider consulting an endocrinologist who works with a transplant team.   Just ask the center you are listed at what endo they refer patients to.

[cassandra]

Welcome to the site John


 


Cas

[kristina]

Hello and welcome to IHD and please ask your doctors more questions about the parathyroid hormone etc. I had a similar problem whilst needing dialysis-treatments and fortunately my transplant came up before any further thyroid-discussions could take place. But I remember my doctors being rather hesitant about doing anything about my thyroid-problem in any haste and, as I have mentioned, the transplant came up "just in time" ... I do hope your luck changes very soon as well  ...  and I wish you the all the best with a very positive outcome for your future ... take care and good-luck-wishes from Kristina.