Surgery was a success!

[Desert Dancer]

Wednesday was a VERY long day, even longer than I expected… 3:00 AM to 10:00 PM, with 14 of those hours spent at the hospital. Hurry up and wait, I guess. But everything went flawlessly and I’m here at home sipping on homemade chicken soup made just for this occasion.  I think I’m gonna go buy some orange creamsicles today.  My throat and chest are really sore, though thankfully the soreness from the breathing tube is gone. The surgeon discharged me with Vicodin and I've only taken two, though I probably could have gotten by without them, really. My throat feels like it does when your glands are swollen during a bad flu and my chest feels like it does when you swallow something the wrong way and get a big bubble of air in your chest.

For those of you who are interested, here’s how it went. First I had the sestamibi scan. They injected a tracer dye and then took two sets of images, two hours apart. As you might expect, this mostly just involved lying very still and letting the camera do its thing.  Each set of images consisted of four angles: the neck from the front and both sides and then an image of the chest. An interesting side note: the technician told me that they stumbled upon this whole procedure quite fortuitously; they were using the dye to image other things – such as the heart – when someone noticed that defective parathyroids were taking up the dye and glowing on the images they took. She said to this day they still don’t know WHY only defective parathyroids absorb the dye, just that they do, so they went with it and now it’s pretty much standard procedure for imaging parathyroid glands.

The highlight of the whole day had to be the fact that I got to do some education and hopefully help someone a little in the process. I spent about two hours total with the tech who did my scan and it turns out she has PKD, as does/did her older brother and her mom (who died five years ago after five years of in-center dialysis).  Turns out she had no idea there was any such thing as home dialysis (though she had kind of heard of PD) and thought she and her brother were destined to go in-center like their mom.  So I got to tell her all about home dialysis generally and nocturnal dialysis specifically, also touching on the basics of PD. We covered a lot of ground: access options, modalities, medications, the problems that come with kidney failure – such as hyperparathyroidism – basically an impromptu little seminar on kidney failure and dialysis! She had a hundred questions and all the information I gave was completely new to her. Needless to say I stressed the importance of education and self-advocacy and naturally I directed her here as my go-to site for information and support. She laughed when I told her the name and said it would be easy to remember. I told her why Epoman started this site and what a miracle of community it is here. I also directed her to Dr. Agar’s site, Bill Peckham’s site and Home Dialysis Central, for a start. I gave her my email address and phone number and told her to contact me any time she liked. She said she’d definitely check out IHD so hopefully we’ll see her around here sometime. It felt really good to be able to help someone in such a small way and I’m hopeful she’ll be able to use the information I gave her. Talk about a coincidence!

After the scan came the surgery (after many more hours of waiting – I got a lot of crocheting done). Obviously I can’t really report on the surgery because, well, I wasn’t actually there, right? Turns out all four of my paras were bad so the surgeon ended up taking out three and three-quarters, leaving in one-quarter of my lower right parathyroid. The reason my chest is also sore is because one of my paras was in my chest, just below my left collarbone. Peripatetic little sucker. The surgery took about 45 minutes and I woke up after about a half-hour in recovery to a warm blanket on my chest, ice pack on my neck and a lovely, kind nurse feeding me ice chips with a spoon. I was discharged and on my way home an hour later.

I had my scheduled clinic visit the day after the surgery (yesterday) and my nephrologist and nurse were a little freaked out; it seems I am the very first patient they’ve ever had who’s been immediately discharged after this surgery. So the nephrologist has ordered a stat calcium/phosphorus lab draw three days running – yesterday, today and tomorrow. The surgeon discharged me with prescriptions of calcitriol, .25 mcg and 600 mg of over-the counter calcium, both twice a day. He said leaving the bit of parathyroid in place – instead of implanting in it the forearm – means the drop in calcium will be more gradual, and I’ve had no symptoms at all of hypocalcemia.  I have a tiny one-inch incision in my suprasternal notch though I haven’t actually seen it yet – there are two dressings on it, a clear dressing with gauze, which will come off today, and a cosmetic surgery dressing that will come off in ten days.  If anyone is interested in seeing what it looks like let me know and I will have Andy take a picture when he gets home. I’d take it off now but I’m going to be trimming trees and cleaning screens today and I’d rather keep it covered for all that. Got some mighty strange looks yesterday when I was out and about shopping!

Sorry this is so long – I didn’t mean to write the Great American Novel here! I just thought it might be helpful to someone to have a full description.

[bleija]

can you talk? lol, that was what i waas most afraid of... lol, hopefully i wont have to have this surgery, the first day or so is always the worst, its only uphill from there

[MooseMom]

Thanks for taking the time to post about your experience, DD.  That was really thoughtful of you.

So glad you came through with flying colors.  Hopefully you won't ever have PTH troubles again.

[fearless]

Desert Dancer,
Thank you so much for letting us know your experiences.  And educating us some more about the surgery.

I'm so glad you did so swimmingly!

 

[lmunchkin]

DD, my husband is having problems with his PTH as of late.  He is taking the Caltriol (?), and they are wanting to put him on Sensipar.  There is a sqabble about Ins. paying it.  Will get that worked out in some way, but my question is, is there anything in hinesight looking back, that you could have done something different, what would that be?

Im so glad you posted this.  This could very well save my loved one from thus another surgery.  Thank the Lord, he has not had one in almost 2 years!!!!

Thanks again for this and all the help you can give,
lmunchkin

 

[willowtreewren]

Very interesting, DD.

I'm glad hubby dodged that bullet. 

Aleta

[Gerald Lively]

Surgery Monday at 5:30 AM, an Angioplasty because my fistual is not working satisfactorily.  This means I have to get out of my warm cozy bed at 4:AM due to travel time.  The last time I got up that early was the day I was born, and that did not make my unmarried parents happy.  They have been shoving me back in ever since.  That was in 1938, folks.  Hey, in my previous life I was a stud bull in the pasture and I never got married. 

I feel like some test-dummy - someone to practice on.  Is there ever going to be a routine to this dialysis business?

[Desert Dancer]

DD, my husband is having problems with his PTH as of late.  He is taking the Caltriol (?), and they are wanting to put him on Sensipar.  There is a sqabble about Ins. paying it.  Will get that worked out in some way, but my question is, is there anything in hinesight looking back, that you could have done something different, what would that be?

Really there's nothing you can do about PTH (as far as I know). I tried calcitriol but it just drove me into hypercalcemia every time, no matter how they tried to adjust the dose.  Then I tried Sensipar: 30 mg and that didn't work, then up to 60 mg and it worked for a little while - took away my bone pain - then up to 90 mg when the 60 mg dose stopped working. Then the 90 mg dose stopped working and my PTH started shooting up again. Even if the Sensipar had continued to work there's no way I could afford $1300/month for one medication. That's one of the main reasons I decided just to have them out and be done with it.

Don't know how that's very helpful to you, but there it is.

[lmunchkin]

Well thank you for your insight. Im glad your surgery went well.  Hopefully it will be the last for you.  You have certainly been through your share of troubles.  Heck my hubby said no to the clinic about taking Sensipar.  He said he is tired of taking all these drugs.  He has done very well on his labs and has aleviated quite a few meds, but I'm afraid if he doesnt get his PTH down, it can be serious problems for him.  Im the one stressing over it, but I cant force him to take his medicine for this.  I just got him a few months back to taking his binders like he should.

The thing that gets me, DD, is why over the past several months had they not caught this.  They only mentioned it when it hit 1000.  Even if they check it every 3 months, there has to be something causing it to shoot so high.  Is there anything in his diet that may be causing it?  Who knows!

Thanks again Desert Dancer, for all your help.  So glad you are recuperating well.  Be good to yourself & take care.

lmunchkin

 

[paris]

Great information for everyone.  Thanks for sharing   

[sullidog]

how do you the patient decide when to have this surgery? besides the costs of meds is there something else that has to be a problem before they will approve it?

[Desert Dancer]

Heck my hubby said no to the clinic about taking Sensipar.  He said he is tired of taking all these drugs.  He has done very well on his labs and has aleviated quite a few meds, but I'm afraid if he doesnt get his PTH down, it can be serious problems for him.  Im the one stressing over it, but I cant force him to take his medicine for this.  I just got him a few months back to taking his binders like he should.

Well, it sure isn't going to work if he won't take it! If I were talking to him I'd probably tell him to at least try it. For a little while, at least, it sure did seem like a miracle drug to me. It brought my PTH down drastically when I started it - and at the first dosage increase - before it stopped working. Everyone is different, so who knows? It could work for him. I agree the cost is a real concern and insurance companies are Über-reluctant to pay for it. All I know is the PTH has GOT to be brought down because it causes real problems; in my opinion it's not just some secondary thing that can be dealt with at someone's leisure. Here's the PubMed entry on hyperparathyroidism:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002195/

The thing that gets me, DD, is why over the past several months had they not caught this.  They only mentioned it when it hit 1000.  Even if they check it every 3 months, there has to be something causing it to shoot so high.  Is there anything in his diet that may be causing it?  Who knows!

PTH is part of a delicate interaction amongst calcium, phosphorus and vitamin D. I don't really have the knowledge to answer a dietary question about PTH because the relationships in which it is involved have never really solidified in my mind and I don't want to steer you wrong. I can tell you I've never been advised that I could control PTH through diet; the impression I've been given is that once they become whacked out by kidney disease there's not a whole lot you can do about it. In addition, my PTH starting going off the charts at least 14 years ago - LONG before I got anywhere near ESRD and still had a GFR in the mid-thirties.

I also don't understand why it is not more closely managed by some nephrologists. The only reason I knew about it 14 years ago is because I changed nephrologists and the first two things he did were 1) start me on IV iron for severe anemia, and 2) tested my PTH, a test my former doctor had never done at all. At that time it was something like 1500 and he immediately started me on calcitriol.

I'm sorry I don't seem to be of much help. Maybe I should just shut up. 

how do you the patient decide when to have this surgery? besides the costs of meds is there something else that has to be a problem before they will approve it?

In my case, I got fed up one day at the pharmacy because I'd fallen into the 'donut hole' and that's when I started pushing for it (knowing it would be a drawn-out process to get referrals and approvals). It was simply coincident that the Sensipar also stopped working around that time. Who knows if they'd have approved the surgery if it still worked? Somehow I doubt it so it was a real relief to have a solid reason other than financial. I certainly didn't want to wait around for my bones to disintegrate out from under me first.

[MooseMom]

I certainly didn't want to wait around for my bones to disintegrate out from under me first.

Ooooh, like in that new horror movie they're advertising on TV that's coming out on Christmas Day!  That's what's making those people turn into dust...high PTH!

[billybags]

thinking about you, hope every thing is OK

[sullidog]

Hmmm, I notice I get tired easily and my hemoglobin is normal, so I guess I'll see what my PTH is, last month it was high but deffinatly not as high as yours, I think mine has never gone above 500