Welcome!

DISCLAIMER: The purpose of this blog is for me to share my experience with my health problems, as I found comfort in the experience of others when I first started to research what I was going through. No post or information offered on this blog is meant to take the place of proper medical advice. If you have questions about your health and what measures to take, I suggest arming yourself with knowledge. That means researching the matter thoroughly so as to be better able to discuss it with your doctor and understand what is happening and how to proceed.

 

This blog covers my experience with Hyperparathyroidism and, subsequently, Kidney Stones from the struggle with being properly diagnosed, diagnosis, and then several surgeries and follow-ups. If you’re looking for specific information, I suggest starting with My Story / Timeline, which explains the experience starting in 2007 and highlights related blog posts. I’ll update this page as new information becomes available.

You should also check out the Resources page for websites I found helpful during the process, and grain-free dieting which helped me during my recovery process.

If you have any additional questions or feel like chatting, just comment! I’m happy to answer as I can.

Kayleigh

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My urologist is a prick

I had a good run with the no-pain thing. Thirteen, fourteen months? In mid-October I started to feel little flits of something in my left side, but work was so busy that I kept myself running and ignored it when I could. Then around the start of November the dull ache returned. Off and on, nothing more than a bruised feeling, until about a week ago when it increased to some real pain. It’s still nowhere near where it was at the start of 2013, but it’s back to what it had been for the two years prior to that – on-again, off-again aching with the occasional sharp twist that takes up my left side and exhausts me.

I had a follow-up with my urologist scheduled for September, which they cancelled (by letter—who does that?). I rescheduled for this past Thursday. Very much like my first appointment with him, my urologist was dismissive.

“Kidney stone pain is constant. If it was a stone you wouldn’t be feeling it here and there.”

“Well, could it be an infection?”

“If it was an infection you’d have other symptoms.” Which I don’t. Just the pain. Which is true of the last time I had an infection in August 2013.

Literally could have just cloned his response from my first appointment. It’s not your kidneys. And what happened following that first appointment? He did further testing and discovered ten kidney stones—four on the left, six on the right—one of which was sitting right over the highly-situated, problematically-narrow opening in my left kidney causing on-again, off-again blockages thus my on-again, off-again pain.

And yet here I am, still with a dull ache in my side.

He sent my labs out for further testing since their in-house labs were inconclusive re: infection. I had the results of those labs in my online system yesterday morning. When I got out of work I called the doctor’s office, because I had some pretty significant pains through my side yesterday and knowing my history and being very thorough about understanding my own test results (I’ve armed myself with knowledge to the point that I’ve had several nurses and doctors ask if I’m a med student), it looks like—hey, I was right—there is an infection there.

“It takes 48 hours for us to get lab results, so we will have them for you on Monday.”

“They’re already in my file, though.”

“We won’t have them until Monday.”

So I get to spend an additional 72 hours with a possible infection because this doctor’s office is not up to speed with electronic systems and I can’t impart my own lab results to them.

I don’t understand the medical community. For the record, in my poetry workshop this past semester I wrote a comical free verse poem called, “My Urologist is a Prick.” It will win no awards, but it keeps me amused.

On a high note, I was in and out of my ultrasound and follow-up with my urologist faster than I’ve ever been called from the waiting room.

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One Year Pain-Free

As of today, I think, but definitely as of this week, I’ve officially been pain-free for one year. This is something that I feel shouldn’t need to be celebrated by a 28-year-old who hasn’t been in a horrific accident. But after nine months from the end of 2012 into 2013 filled with terrible pain, the majority of which I barely gritted my teeth through with the help of ibuprofen, Tylenol, and a heating pad strapped to my side, a year ago today (or this week) was when it stopped. So, here we are. One year pain-free!

The fact is I still have six or seven kidney stones in my right kidney, but without all of the pain that the ones in my left kidney had been causing. That means I could continue to be pain-free, or eventually the right kidney could pick up where the left left off. It’s a waiting game. I’m just happy that I’m waiting without the kind of suffering that affected most of 2013. Friends and family truly had no idea–I have a very high tolerance for pain, which has often been a detriment when asking people to understand why I’m not myself, and especially when dealing with doctors. They don’t see the tears they would from other patients, and assume I’m exaggerating. They also didn’t see the fits of anger I was experiencing because I often couldn’t stand for more than five minutes at a time–which may or may not have resulted in a furious rage against my counter and a bag of popcorn kernels. It wasn’t until the tech found all of the kidney stones that the gyno I saw said, “Wow, you must have really been in pain,” and I said, “Yes, I believe I mentioned that.”

A year later and I’m still not 100% myself, but I’m getting there. I’ve started seeing someone locally for bodywork and massages once every couple of weeks. Having to keep myself crumbled up or lying down to stay comfortable for so much of the day resulted in my carrying myself differently. That means I need to take the time and care in retraining my muscles how to move and workout properly again. It’s likely a large part of why I’ve injured myself so many times this year–it’s hard to remember that my body’s not ready to move the same way it used to.

I have a follow-up with my urologist in September, and one with my endocrinologist in February. If all goes well, as I expect it should, then those follow-ups should continue to be spaced further apart until they’re unnecessary.

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Cleanin’, and Cookin’, and Bakin’!

I posted this on my regular blog, but felt it may be interesting to some of the folks who follow over here.

Grain-free diets are scary to a lot of people, but the benefits are great. Grain-free dieting has been shown to help with symptoms from diabetes, thyroid troubles, PCOS, endometriosis, arthritis (grains cause inflammation; removing them eases up on the joints), weight troubles, etc. I can’t speak for others, but I have more energy, less headaches, and despite two weight gain-inducing health issues, I’ve had an easier time maintaining my weight now than when I used to count calories and keep track of my veggie, grain, and meat servings.

The Parade of Specialists Swings Around Again

In February, I met with my endocrinologist, and on Tuesday I met with my urologist. These were both follow up visits to see how I’m faring following the hyperparathyroidism and onslaught of kidney stones.

Because it has been a year and a half since my parathyroidectomy and coincidental thyroid lobectomy, and because all of my tests came back normal, my endocrinologist gave me the thumbs up to start spacing out my appointments by a year instead of six months. She expects no further complications from the hyperparathyroidism or surgery—yay!

My urologist, who I still dislike a great deal, said that my left kidney is looking just fine, which means no new kidney stones! (Something I assumed would be true now that my body isn’t producing all that extra calcium.) My right kidney is of course still full of stones, as no treatments have been done regarding that kidney yet. He said that there is some “calcification in the meat,” probably a kidney stone that hasn’t made its way into the hollow of the kidney yet. It’s 7mm, which is a decent size.

But because I’m still not experiencing any discomfort, he was okay with just keeping an eye on things rather than taking an offensive approach. We scheduled my next appointment six months out, so long as I don’t experience any pain between now and then. I think I’ll take that time to find a new urologist—one who doesn’t have the personality of an angry piece of sheetrock.

I had an appointment with another specialist this week for unrelated health issues, but hopefully that will be less life-encompassing than the hyperparathyroidism turned out to be.

Onward and upward, or some such.

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Where My Kidneys Stand

Following my uteroscopy in July, I still had small bouts of pain in my left side. This was chalked up to the stent that had to remain in to allow my ureter to heal properly. I was initially supposed to have my stent taken out a week or two after my uteroscopy, but at that appointment I was informed that during the surgery, my doctor had discovered I have a high, narrow UPJ. This was the reason that the pieces of my stones hadn’t been able to move out of the kidney following lithotripsy in May, and why the “dust” from my uteroscopy in July, too small to be caught with the little net they use, had sunk to the bottom of the kidney and would likely reform into a stone.

According to my urologist, the pain I had been experiencing could have been caused a) by the kidney stones themselves, b) by the narrow opening, or c) a combination of the two. At this point, the stent had widened that opening, and my kidney had adjusted to having a wider passage. Following my stent removal, he wanted to do a renal scan of my kidneys to determine the level of obstruction, if any, from the narrow opening.

However, if the stent were to be removed then, there was the possibility that my pain would resume in full, or even worsen, as the opening resumed its “normal” size. There was also a possibility that the opening, having been stretched by the stent, would remain widened. Whether or not to have the stent out now was up to me–my urologist thought another month or so may help the latter scenario play out.

Because I had already placed a delay on my thesis, and because my thesis was due in September, I wanted as much time pain-free to work on it as possible. I opted to keep the stent in, worried that taking it out would cause the kind of pain my urologist suspected. We scheduled my stent removal and renal scan for the last week in August.

For a few weeks into August, my bouts of pain were minimal. The stent tended to cause spasms now and again, but nothing that kept me from living my life as the pain from the kidney stones had done. It was following a wedding in late-August that I found myself doubled over in pain and unable to move. I spent the night in tears, in bed, and had an emergency appointment with my urologist the next day. We were only one week shy of taking the stent out anyway, and so he removed it then. The spasms from the stent had also caused a UTI, and so I was placed on Cephalexin, an antibiotic I had already been prescribed four or five times since my lithotripsy, and absolutely hated.

The following week, completely pain-free for the first time in months, I underwent a renal scan. No one explained this scan to me in advance, and so I was surprised to find out that I would have to lie on a table for 45-minutes with radioactive materials injected into me, while the scanner takes a series of images. In conjunction, fluids are pushed through the body to help the material move quickly for the imaging machine. This was great, and kind of fun to watch on the screen, except that by the end of it, my bladder was about ready to burst.

The great thing was that there was absolutely no obstruction on either side. When I returned to my urologist in September, he confirmed that with no obstruction present, there was no need–at least at this time–to consider any surgical correction for my narrow UPJ. There is always the possibility that as I get older this may develop into a larger problem, but as long as I know to keep an eye on it, I’m okay for now.

My urologist also gave me options regarding the remnants in my left kidney, and the stones still hanging out in my right kidney. Neither side was causing me any issues, and as he explained it, they may never cause me issues. With my hyperparathyroidism cured, there is no reason to think that my body will continue to develop this many stones. I opted for no further treatment, and, unless the pain starts up again, will revisit with my urologist in March.

It has now been two months since that appointment, and Angry Left Kidney is still pain-free and happy.

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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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Nice degree, can I have a copy for myself?

On at least three separate occasions over the past few years, I have asked doctors if the pain that I get through my left side and lower back could be kidney stones. Kidney stones can be a direct cause of hyperparathyroidism, and given how far back this pain has been going on and how long my blood calcium had been high (six years pre-surgery), it made sense to me. My mother also had them when she was only a few years older than me, and having a parent who has experienced kidney stones means the child has a higher chance of experiencing them his or herself.

After three years of being told I have PCOS, that the pain I felt was likely from ovarian cysts, and that I should “take a couple ibuprofen,”  I was growing weary of the “wait and watch” approach my PCP had enacted. My six weeks in Ireland between December and January was marred by several bouts of severe pain, including one that landed me in the ER.

So with the pain becoming worse and more frequent and lasting significantly longer than it ever had, I finally made an appointment with a gynecologist. This was at the beginning of April. The gyno told me there was a good chance that I had endometriosis and that I would suffer for the rest of my life. To be sure, he wanted to do a laparoscopy, which is the only way to confirm the presence of endometriomas. His nurse, after he left the room, decided to relay her story to me in which she had surgery after surgery after surgery, each one making the symptoms worse, until she, “finally just had a hysterectomy to get it over with.”

I shouldn’t have to tell you that I went home utterly devastated. I spent the weekend in a messy heap of darkness. And I mean that. I mean I reached a point at which after three years of this “mysterious” side pain, and over a year of all this shit with blood tests and scans and doctor after doctor, I believed I would never be healthy again, that there was nothing to look forward to beyond this point in my life if at twenty-six years old I felt so horrible all the time and there was no end to that in sight. And I cried. Like, really cried. A lot. For the first time in years.

The following Monday, after the emotional takeover eased up, and after much contemplation, I decided I did not buy the doctor’s diagnosis, and that I was not going to undergo the suggested procedure. I don’t have a degree in medicine, but I know my body well, and this didn’t feel right. I had acupuncture for the first time in the hopes of helping with the pain. That Tuesday, I also had a followup ultrasound to investigate the ovarian cyst on my left ovary, to see if it had grown and could possibly be adding to the pain.

Instead of the usual ultrasound techs who quickly look at what they are supposed to and send you off, I had one who investigated a little further. She found a stone in the ureter, and though she did not have an order to do a scan of my kidneys, she did one anyway and found, in addition to the stone in the ureter, four other stones, two in each kidney. Three of the four measured over a centimeter, and my left kidney showed signs of renal colic and a backup of fluids.

As in, not ovarian cysts.

As in, not endometriosis.

As in the very thing that I had asked about several times over the course of several years, INCLUDING during a trip to the emergency room in January 2007, when I woke at 6AM with the worst pain I had ever felt tearing through my right side (had actually forgotten all about this until I was told I have stones in both kidneys). This was before I even knew I had hyperparathyroidism. By the time I was seen, the pain had eased and no scans were ever done because it was never even considered a possibility.

Now, I started this blog to chronicle my writing path. I don’t like sharing too many personal details from my life, and so you’ll probably notice that my friends and family tend to be, for the most part, kept out of it. But the health stuff I’ve always wanted to share 1) as an outlet, and 2) because I think people sometimes need the real-life experience as opposed to the WebMD explanation. And my experience is  exactly why we must be in tune with our own bodies and be our own advocates. Not only did I have to be the one to push for my PTH (parathyroid hormone) levels to be checked last year, but had I not gone to see someone without a referral from my PCP and had this followup ultrasound, who’s to say how long I would have been in pain while we continued with the “wait and watch” approach?

When the gyno called a week later to apologize for his assistant’s over-share re: endometriosis, I asked if he had been told yet about the results. He hadn’t. He looked at the scans while I was on the phone with him and quite literally said, “Whoa” and “You know they say that’s the one pain worse than child birth?” I can’t do a comparison, but, um, yeah.

Everyone seems surprised, too, that I have them at such a young age. But again, I had hyperparathyroidism. My calcium was elevated for at least six years that we know of, and I wasn’t told about it until last year. It shouldn’t be a shocker that someone who had a condition that causes kidney stones has kidney stones! At some point, with my constant reminder of, “Hey, so there’s this pain in my side?” someone should have checked for kidney stones–it’s the easiest, most logical answer. The good thing is that because I’ve already had the parathyroidectomy, the condition is corrected and this should hopefully not be a recurring problem once fixed.

A friend who suffers with kidney stones passed along a home remedy that’s meant to help stones pass, or at least ease up on the pain. It’s absolutely horrifying, but since I started doing it, I haven’t taken any pain meds, and I’ve barely needed the comfort of my heating pad to get to sleep. A shot of apple cider vinegar (organic!), a shot of extra virgin olive oil, a good dose of lemon juice, followed by a TON of water, twice a day. I spend about 45 minutes nauseous and cursing the gods of all religions, but it’s worth it.

Unfortunate though it is that I now I have to be referred out to yet another doctor (I have an entourage!), I am absolutely thrilled to finally have an answer. And one that is so very, very fixable! I’d also love to get this done and over with as soon as possible so that I can enjoy my summer and perhaps enjoy a visit from a certain Irish fellow.

“Take a couple ibuprofen.” Puh-lease.

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Six Months Post-Op

It’s been six months since having Tex and two other parathyroid glands removed. With regards to my post-op scar, I was told that by six months it would be nearly invisible. This is not the case, but that may be due to the need to expand the cut during surgery when they found they needed to explore further. Still, it’s not terribly hideous and is fading and breaking up–sort of. My parathyroid hormone (PTH) levels have returned to normal, as have my blood calcium levels. (Yay!) Unfortunately, my thyroid levels (from where half the thyroid had to be removed to take out the last adenoma) have worsened. I’m still not suffering any of the major symptoms of hypothyroidism (except perhaps fatigue, but I’m engaged in stress and another health battle that I think is a bigger problem there) and so I’m still refusing my endocrinologist’s recommendation that I begin hormone replacement therapy.

One of the major factors for this recommendation in November was that I had put on about five pounds following my surgery. I have, however, since lost those five pounds and then some. In fact, I’m only a pound more than I was this time last year, which is within a healthy BMI. When I returned from Ireland in January, I began a completely grain-free diet–no wheat, barely, rice, oats, etc., and even no corn. I had made a decision toward this before my trip, after reading up on the benefits of grain-free diets in lowering blood sugar levels and lessening (even curing) the symptoms of PCOS over time. The decisive moment came after a rather painful six weeks in another country, many tears, vomiting, an emergency room visit due to a burst ovarian cyst, an ultrasound, and my doctor, upon my return home, telling me, “Well, yeah, there’s a small cyst still there but let’s wait it out.” The “let’s wait it out” is the same response I had a year ago, but apparently my case is not considered severe enough yet despite the worsening of my pain due to the cyst regrowing over and over again. (Kind of like my high calcium levels hadn’t been considered severe until I insisted on my PTH levels being tested.)

So I’ve gone rogue and am handling things myself. The grain-free diet has been a biggie, proven already by the weight loss. Both hypothyroidism and PCOS are major culprits of difficulty to lose and keep off weight, which in turn makes the symptoms of both disorders worse. The weight loss is the only thing that kept my endocrinologist from really pushing for hormone replacement therapy when I saw her in February. But it should also be helping the ovarian issues. Along with the diet, I’ve started using natural progesterone cream and nascent iodine supplements. Both help with PCOS, both help with thyroid issues.

My next followup is in August. I’m crossing my fingers that by then things will have started to change–I know that ovarian/hormonal issues tend to take four to six months to reverse and get better, and I’ll be just over the six month mark at this appointment. I’ll be eleven months post-surgery at that point, too, so fingers crossed the same is true for thyroid. It would make for a nice birthday present.

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