Tag Archives: surgery

De-Stoned

Two good things, health-wise:

1. As of yesterday, my left kidney is completely stone-free. Once the stent is removed next week, I should also be pain-free.

2. I had new labs done last week, and my thyroid function is finally picking up. My TSH levels have dropped from 5.52 to 2.92. Still not back to where they were before the lobectomy in September, but the fact that my levels are lowering is a really good sign.

I will have to take care of my right kidney at some point, but because it’s not causing any discomfort right now, I can wait. And hopefully once recovery from this surgery is over, my brain will start working again and me and my thesis can start bonding again. Yay!

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Stalled

I had surgery at the end of May to help with the kidney stone situation. And it did help, to an extent. While it didn’t break up the problem stone into small enough pieces, it broke it up a little bit and moved it so that it is no longer causing a blockage. Unfortunately, where it is now, it is unlikely to pass on its own, so I am having another surgery in a couple of weeks in which they will actually go in and remove the pieces (and hopefully the other stones, too). In addition, after a week of blissful pain-free almost-back-to-normal living, one of the other stones, which had probably been unable to pass with this larger one blocking the way, has decided that with the passage clear it wanted to move out of the kidney. So I’m back in agony.

(On the bright side, if I ever want to have children, they say that this pain is way worse than that pain, so I should be well-prepared.)

Once the surgery is over and this stone passes, then, hopefully, I will be better. At least until they decide to take on the right kidney. Which I have told my doctor will not be for a long time because I want my life back and my right kidney is currently not a problem. So there.

Unfortunately, this whole thing has put a major stall in my thesis process. I thought it would all be over by now. Between the pain and the pain meds, I find myself unable to focus most of the time. I feel fuzzy. I’ve started to forget things that I should know–like a password at work that I’ve typed several times a day every day for the past three months. I know it’s because I’m exhausted, and from the pain meds, but it’s like I’m going crazy. It’s disheartening, and because of it I have made no headway on my thesis. I was really hoping that once I had recovered from the last surgery I would be able to get my momentum back and finish this guy up.

And now? Now I have e-mailed the head of my program and my advisor to find out what my options are if, in the month of what I hope will be clearheaded-ness after this next surgery, I am not able to finish my novel.

Between my health, my thesis, and some personal things I’ve had going on, I feel like there are just too many pieces of my life that I have no control over right now. There are times I feel like I’m just sitting on a panic attack, just waiting. And it’s frustrating.

I still want to graduate in December. That’s my goal. So cross your fingers for me that this next surgery works and I get my brain back.

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Parathyroid: Game Over

I finally had my parathyroidectomy on Thursday. I am returned to you now shy not one, not two, but three parathyroid glands. My surgery was longer and more complicated than expected, with the first two “suspicious” parathyroid glands removed in the first hour and a half. My surgeon had closed me up and been ready to send me to recovery when my lab work came back to say that my PTH levels hadn’t dropped, meaning there was another bad gland.

And it was hiding.

My surgeon had to do a full exploration, going down as far as my thymus to look for the gland. My adenoma was actually residing within the right side of my thyroid, and so I had to have that removed as well. My surgeon said that when this is the case, the adenomas usually pop out easily, but not mine. It had burrowed nice and deep. As soon as the half of my thyroid was removed, my PTH levels plummeted.

I was in surgery for five and a half hours total and ended up having to spend the night in the hospital. My time in recovery was the worst of it. I literally felt as though someone had slammed me into a cement wall again and again and again. I was expecting the neck pain and the shoulder pain. I’d prepared for that. I had not prepared for the bruising through my chest from the exploration. It was like I had severe whiplash and bronchitis rolled into one. AND they must have had my right heel up against something during the surgery because it was very red after surgery, very sore, and on the surface is still numb to the touch three days later.

Anyway, the good news is that the problem should be fixed. I have to take calcium supplements for a while—possibly for months—to make up for all of the calcium my bones have lost in the (likely) years that I’ve had this. My body also has to adjust to working off of a normal calcium level. While my levels were normal leaving the hospital, my surgeon explained that my body has gotten used to functioning off of levels a good two points above where I’m at now. So it’s all going to be an adjustment. I also have to be careful that my bones don’t suck up so much calcium that I go into hypocalcemia, thus the supplements. (And ice cream. Lots of ice cream.)

I’m doing okay today, although feeling a bit foggy. The stiffness is still present in my neck and shoulders, but my chest is finally starting to ease up a bit. I can breathe without feeling like some fat kid is sitting on my chest. I’m also sleeping at night. Like, actually sleeping. As in falling asleep within a reasonable amount of time of lying down and then staying asleep until morning. It’s pretty amazing, and I can’t wait to see what else changes over the next few weeks and months.

The mental/emotional aspect is what I’m having the most difficult with at the moment. I won’t look at myself in the mirror because it terrifies me to see the mark on my neck. And when my mum was explaining to my aunts on the phone how the procedure went, I had to block my ears and walk away because it made me nauseous. Wasn’t really expecting that so I’m not sure how to deal with it.

Follow-ups in a month with the surgeon and endocrinologist. My surgeon said he hopes my concentration issues clear up by then and I can present him with the next great American novel. Harhar.

(P.S. This is apparently my 100th published post. It’s a pretty good one to be #100.)

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Parathyroid: Surgery scheduled!

I’m going to cheat and take this from an e-mail I wrote earlier, with a few edits and additions…

I went into Boston today to meet with the new surgeon. He was lovely, much more personable than the last one, and so much more knowledgeable about parathyroid disease and the parathyroidectomy–he also does significantly more of them in a year than did the other fellow I saw. He said that he did understand where my last surgeon was coming from on the waiting thing, that that is usually the stance they would take with someone who is young, has only slightly elevated calcium, and is asymptomatic. He also agrees that being so young, there’s a greater risk of another adenoma becoming a problem later on, which factors into that desire to wait. But, unlike the other surgeon, he believes from what I told him that I am, in fact, experiencing too many symptoms to ignore this. Like he said, “You’re a writer and you can’t concentrate? So really I’m all that stands in the way of the next great American novel.” Ha ha. (No, I don’t think I’m on my way to writing the next great American novel. Far from it. But I was amused nevertheless.)

So I am having my surgery on September 20th! (Bar any emergency surgeries on his part.) I am so happy, excited, relieved, and terrified all at once. He said it is going to be tricky–people like me without positive scans may just have had a bad scan (scans, in my case) done, or it could be some rarity like an extra gland, or an adenoma that’s hiding in my chest or in the thyroid itself. I’m going to have another ultrasound done by someone more experienced in hyperparathyroidism either on the same day as or close to my pre-op procedures. I also had a lot of blood taken today (I think I counted somewhere around 10 vials!), because he wants to check my levels and to test for signs of the MEN1 gene, just in case.

For a week pre-op, he also wants me to stop taking all medications and vitamins, except the vitamin D. I guess there’s still just too much back and forth on the D issue. Like my endocrinologist, he believes that taking the D is important because without it balanced post-op, the calcium levels with drop too low instead of evening out. So I’ll do that. My issue is with ceasing things like ibuprofen and Excedrin—they’re how I survive my (almost) daily headaches. I may very well be one cranky little thing the week leading up to this surgery.

Regardless, this phase of my life is hopefully coming to a close in less than three weeks. Fingers crossed I don’t have any of those pesky rare complications.

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Hulking Out: The Parathyroid Saga Continues

After I met with the endocrinologist I was told I would be scheduled for some scans to try and identify which of the parathyroid glands is/are acting out. There seems to be a level of arrogance mixed with incompetence when it comes to all of this; several times appointments have just been made for me, last minute, without any concern over my own schedule, and of those times, twice now I’ve been given the wrong information or no information at all. Thankfully I’m a real pain in the ass and call until they finally answer me, otherwise I would have missed one of my scans.

I had two scans last week, an ultrasound and a parathyroid (sestamibi) scan. I’d researched enough to know the ultrasound was pointless—they almost never show anything in my situation—but no one had said I was getting that in addition to the parathyroid scan until I arrived at the hospital. It didn’t take long, though, and I was close to asking if the technician would just stick the thing on my side while I was there and find out what’s going on with all that. The technician I had for the parathyroid scan was delightful and entertained my jesting about hulking out when he injected me with the gamma rays. I’m not particularly comfortable with the idea of anything to do with medical treatments and side effects—drove my ex nuts with all my reasons that my body and Western medicine don’t get along—and the only way that I can deal with it all is to just joke about it. So I told everyone for the rest of the day not to make me angry. The test itself was terrifying; I had to lie down, and the thing that takes the images is a flat square that was lowered to about half an inch above by nose. I literally lay there with my eyes closed sing-songing in my head, “Happy place, happy place, happy place.”

Neither of the tests showed anything to do with the hyperparathyroid. Found that out when I met with the parathyroid surgeon a few days later. I love it when doctors act like you’re an inconvenience. I mean, he was nice, sure, but he was rushing. He just kept chattering at me and asking me questions really fast. He didn’t even ask if I had questions until the end of the appointment when I said, “So…” and whipped out the paper I had with all my questions on it. He sat back down and said, “Oh, you have questions?” Fuck yes (excuse my language) I have questions. You want to open up my throat, of course I have questions.

Anyway, I didn’t like him. First of all, he said something along the lines of, “Sometimes in these situations we see if increasing the patient’s vitamin D intake will help with the problem. Obviously it hasn’t in your case.” No, it hasn’t. Because vitamin D deficiency does not cause hyperparathyroidism. I was told to take vitamin D so that when my parathyroid is removed, my calcium doesn’t take a dive. Know your shit. He also doesn’t perform enough parathyroid surgeries in a year for me to be comfortable–125 thyroid and parathyroid, about 25% of those are parathyroid. Hm, no. And he said that if the next scan, a 4D-CT, doesn’t reveal which parathyroid is causing the problems then he’ll have to do an exploratory surgery and that in that case he tells his patients to “pick which side feels luckiest and start there.” Bite me!

I had my 4D-CT yesterday. That was fun. Can I just say that the little gowns and the robes they give you in the hospital are not completely uncomfortable? It was 94 degrees outside yesterday; I could have hung out in that thing in the air conditioned radiology unit for hours. Turns out I was only there for one. Put in the IV, inject saline. Get me in the machine, inject—ink? I think they said ink. Whatever it was it made me feel super warm for about 30 seconds. Take some pics of my glands, and then watch me for 20 minutes to make sure I don’t have some kind of adverse reaction to whatever stuff they’d injected me with. Sweet.

I have my second meeting with the surgeon tomorrow to see whether or not the scan shows anything. I was quick last week to decide I would be getting another surgeon, but I’m going to see what he says tomorrow before I call Mass Gen or Brigham and Women’s and demand appointments with people who do this more regularly.

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