My health chronical in a (big) nutshell

 

Some of you have read much of this before—in piecemeal. I can’t really say why I’m inspired to pull it altogether at this point, but here goes one hot mess of a health chronicle.

My BP issues started more than twenty years ago when I asked my doctor about my higher than usual BP readings. She prescribed medication rather than exploring the reasons behind the hike. It would’ve made sense for us to wait; after all, I weighed 98 lbs., exercised regularly, and ate reasonably well. In retrospect, it was no wonder that my BP was up: my mom had recently died, my daughter was heading off to college leaving us with an empty nest, and I was experiencing problems requiring a decision about a hysterectomy. At any rate, she prescribed the first of many different BP meds. After a couple of years and several false starts with at least three visits to the ER and the appearance of a symptomatic mitral valve prolapse, my BP settled into a pretty normal pattern.

Jump to fall 2015. My daughter called me one day and told me that she was having trouble sleeping. No surprise there since she was pregnant. I remember this phone call clearly because I was also having trouble sleeping—which continued for the next eight years.

In February 2016, really odd aches and pains moved in; they’d disappear around midnight but return every single evening at 6. The pain affected my joints, my bones, my muscles, my nerves—a different area each night. Blood tests revealed an elevated TSH and ANA, the latter of which had to do with a possible autoimmune disorder. (Upon another blood test, that proved to be incorrect.) At any rate, I saw my internist and was subsequently sent to a rheumatologist and a neurologist. When my eyeball started twitching 10 days in a row, it just about drove me nuts. I asked my cardiologist if it could be caused by my BP medicine; after being on Losartan for 4-5 years, it had stopped working well anyway. He prescribed something else. Relief! I thought that was the end of it because, sure enough, the pains stopped. But the trouble was that the replacement BP med didn’t work. Neither did the next, or the next, or the next. (My BP once read as high as 210/100, and 180/90 was fairly commonplace!) My internist tried me on something, as did my cardiologist (who told me I was high maintenance), as did the Vanderbilt hypertension specialist (who told me there was nothing else she could do for me), as did my nephrologist (who fired me from his practice for being difficult). My BP remained uncontrolled despite being on medicine, bringing with it a very real threat of stroke.

Each time I went to a different doctor, I reminded him or her that my TSH was high (six out of eight blood tests proved this point). They all said, “No need for drugs if your T3 and T4 are normal.” After calling a friend out of the blue—I hadn’t talked to her for a couple of years—she told me of her own health predicament: her bladder and a kidney had to be removed when cancer was detected. When I shared my tale of woe—definitely minor compared to hers—she insisted I see both a nephrologist and an endocrinologist. I asked my cardiologist to refer me to a nephrologist. An initial ultrasound of the kidneys showed blockage, but a follow-up CT scan revealed that the blockage was minor and, in fact, existed in only one of the two arteries leading to the left kidney. (That in itself is unique; most people have only one.) I kept stressing there had to be an underlying problem; after all, even though I had had a rocky start with BP meds, I had been on an even keel for quite a while.

At the time, my docs refused to think outside the box. All they saw was a woman who didn’t fit the mold of an ill patient. As a result, I got the distinct impression that 1) they hated to see me coming, and 2) they thought I was a hypochondriac.

A new family doctor finally took a deeper look at the thyroid situation by testing my antibodies. She found the number ridiculously high: 836 when it should’ve been less than 9. She put me on a thyroid med on the same day the nephrologist started me on a diuretic, Spironolactone. It took about 5 weeks for the old medicine to leave my body and the new medicines to work out all the possible side effects. My BP started showing up as 125/75 or less. Unfortunately, those readings didn’t last.

 I wasn’t convinced that the very small dosage of Levothyroxine was adequate; I was still exhausted, still freezing all the time—one time at the doctor’s office, my finger was so “frozen” that the oximeter would simply not register a reading—and I remained unable to get a decent night’s sleep. Of course, the fact that I was losing weight should have been addressed, athough my docs chose to ignore it, thinking that a few pounds didn’t merit concern. (Did they not see me when they looked at me? By the time, I bottomed out, I was down to 90 lbs.) Anyway, my nephrologist suggested I follow up with an endocrinologist, and remembering my friend’s advice, I went to the family doc for a referral. Things really started popping then. He found a very small goiter when I swallowed—other doctors had examined my neck, only to find nothing—and scheduled me for an ultrasound the Friday before Christmas 2017. I got the results within an hour. A diagnosis wouldn’t be forthcoming until I underwent a fine needle biopsy, which I scheduled for two weeks later.

In the meantime, we went on our planned vacation. I read a lot but spent very little time with the family because I wasn’t feeling well. When I returned home, I found out I had an ear infection, strep throat, and sinusitis and went on a Z-pack. I underwent the fine needle biopsy as planned. The following day, the doctor called me with the news that I had thyroid cancer.

I conferred with a surgeon. Dr. Teachy diagnosed me with Stage 1 papillary cancer. There was also lymph involvement, shown via ultrasound by enlarged lymph nodes, but even with that, the prognosis was still excellent. In his opinion, it would be necessary for me to undergo a radioactive iodine treatment after the thyroid was removed. Dr. Teachy not only explained the entire procedure and expected outcome in detail but, as an ENT specialist, studied my nasal/sinus situation. (I got a twofer!) The previous bacterial infection had resolved; instead, I had a viral infection and needed to take more antibiotics.

So another week went by with me first on Augmentin and then on Bactrim. I attributed my slight nausea and discomfort to the antibiotics, so I ignored the worsening symptoms and packed for the long-anticipated trip to Greenville. My son and I got in the car on Friday morning. Within ten minutes, I told him to turn around as I had started throwing up and couldn’t stop. Fortunately, we hadn’t gotten far from home. I showered, retching all the while, and crawled into bed hoping to get things under control. I couldn’t. I called my husband  at work; he came home and together with my son drove me the mile and a half to Madison Hospital’s ER.

Have you ever been to the ER, wondering both before and after whether it was the right thing to do? I’ve been in that situation. This wasn’t it.

I was seen within 30 minutes. The first step to figuring out my problem was to hook me to an IV and put me on Zofran to prevent further nausea. (All told, I vomited for three hours.) I wasn’t hopeful about its powers because I’d been given similar drugs before without success; fortunately, the anti-nausea drugs had improved through the years, and I saw almost immediate results. Lab work revealed I had hyponatremia (low sodium), and I was told that I could’ve died had it been any lower. The lab work also showed that I had another bacterial infection. At this point, it meant that I had suffered through five weeks of bacterial, then, viral, then bacterial infections. I was put on an IV antibiotic, Rosephin, which seemed to work miracles.

While I was seen and treated effectively from the get-go, it did take a while to get me to the Med/Surg floor. Everyone was kind, though, and the six hours went by without me getting too terribly impatient. Of course, My husband stayed by my side, with my son spelling him occasionally.

The doctors felt the need to keep me until my sodium reached a more respectable level, and that was done via a saline drip. (I was there two nights.) Unfortunately, my left arm was continually occupied by the IV, so that left my right arm subject to blood draws—and blood draws, they did. Can you imagine being roused at midnight to give blood yet again after having it done six hours earlier, and knowing it would be done six hours later? They drew my blood seven times over the course of two days.

Getting back to my BP medication, I had been on the diuretic Spironolactone. While the nephrologist insisted I had been drinking too much water and that’s what caused the low sodium, my research showed that the drug itself could actually cause low sodium. (In other words, my doctor should’ve been testing my blood to make sure everything was as it should be.) In addition to the opinion that I was drinking too much water, other doctors thought it could be attributed to the ongoing, unrelenting infection for the previous five weeks and the continued use of an antibiotic. 

At any rate, my nephrologist stopped Spironolactone and put me on Clonidine, which presented its own set of problems. While it brought down my BP, the drug made me feel shaky and anxious. I suggested something else that had worked previously, and that’s when he fired me.

I underwent the thyroidectomy as scheduled on February 15, 2018. The doctor chose not to remove any lymph nodes after all, and the biopsy didn’t reveal any additional cancer. I struggled with swallowing from the beginning; yet, I had to take 3 calcium pills 3 times a day for 7 days. Apparently, the parathyroids typically get out of whack in a surgery like this, and they cause havoc with the calcium level. Overall, the procedure and recovery had gone well. I stayed doped up the first day due to both the anti-nausea and pain meds, but I didn’t bother filling the pain prescription med when I left the hospital (after spending a night there—and thanks to my dear husband for spending it with me). I took Tylenol for a couple of days and then abandoned that as well. If I hadn’t had ongoing BP problems and the fact that I broke a tooth the day after surgery due to the insertion of the breathing tube, I’d have said I was doing very well. I had hoped that my BP would “heal” along with my surgery site, but that didn’t prove to be the case.

I thought the bad news about my thyroid was behind me, but in early June, I had to undergo another surgery. My neck looked like a thin man’s with a prominent Adam’s apple. The bulge was caused by a mass in my neck resulting from hypertrophied (enlarged), errant thyroid tissue. The surgeon told me it wouldn't have happened if I had taken the radioactive iodine pill. (If only I had known! But the oncologist said that since the thyroid cancer was Stage 1, small, and contained, guidelines stated the pill was unnecessary.) The procedure was a quick, outpatient operation with no additional cancer shown. (Unfortunately, my scar from the second operation never resolved to my satisfaction.) I was fine after the general anesthesia, but the pain med didn’t do me any favors with 24 hours of nausea probably due to the usual overprescribing for my tiny body. 

Even though these two operations happened in 2018, I’m still undergoing ultrasounds every 6 months to a year. My current endocrinologist would rather be safe than sorry. I underwent an additional fine biopsy at the beginning because a lymph node looked suspicious—and every time I undergo another ultrasound, the same lymph node is flagged. Fine needle biopsies are no picnic, so I hope I don’t have to experience yet another one. 

In February 2020, I got a new internist and when my BP registered 193/73 during my first visit, she prescribed an additional BP medication, Hydralazine. Although it’s pretty commonplace for a hypertensive patient to be prescribed two meds, it was the first time it had happened to me. The additional pill helped immediately but not to the extent we had hoped it would.

Covid overtook the country shortly after, but it didn’t overtake me. I came in close contact with it, though, when I had diverticulitis in January 2022. In the middle of the night, I vomited numerous times and suffered from intense left quadrant abdominal oain. Of course, I should’ve gone to the ER immediately, but who is anxious to go to the ER in the middle of the night, especially when we know our hospital was dealing with Covid? At any rate, Steve took me to the ER the next day after visiting an urgent care facility. He couldn’t be with me in the facility nor in the ER. Due to a lack of health care professionals, I had to walk myself to the ER examination room. When I slowly walked down the hall, I passed a woman who had seven IV bags hanging over her stretcher as she was moved down the hall. Furthermore, I was ultimately taken to the ortho floor because the hospital was crowded with Covid patients, and that was the only room that was available. (Other close calls with Covid: my husband got it in 2023 and 2024 despite being vaccinated.)

Although the healthcare workers were very nice, they were obviously overworked. No one changed my sheets. No one asked if they could help me take a shower, or even comb my hair—which was definitely a rat’s nest by the third day. Due to my pain, it hadn’t even occurred to me to ask my husband to help me. My gown was made for a 300 pound person, so perhaps all the smaller ones were being put to use. 

The pain continued, and I wasn’t allowed to eat for two days. On the third day, I was allowed liquids—hospital liquids and non-brand jello are the worst ever! To make a long story short, I had to stay four nights until the pain disappeared and the surgeon convinced himself I didn’t need an immediate operation. (I had gotten down to 92 lbs.) 

It wasn’t until the final morning that the pain completely went away. And follow-up visits, colonoscopy, and scans showed that my colon is so riddled with diverticulum that I’d better hope I never experience diverticulitis again. Since there’s no cure for easing diverticula and no magic diet, the surgeon warned that I’d better be prepared for a surgery down the road—a surgery that wouldn’t result in a mere twelve inches (the sigmoid colon) excised but the removal of the entire colon. 

As if that wasn’t scary enough, I experienced a TIA in April 2020. (TIA, similar to a stroke, is short for transient ischemic attack that occurs when the blood supply to part of the brain is briefly interrupted.) My experience started with one of my hands going to sleep. Then, the middle part of my vision was blocked. The other hand went to sleep. I told my husband, and we didn’t know what to do. Stupidly, we went for a walk, and my symptoms only got worse. He was trying to tell me something, and I just couldn’t understand that the words had any meaning. When we got home, I burst into tears because I couldn’t find the words to tell him what I was experiencing. After talking to my daughter, a nurse, my husband took me to the ER, and I stayed for an overnight visit while the doctors ran all sorts of tests. By this time, my symptoms had resolved, and, of course, they impressed upon me the need to call an ambulance if this should ever happen again. I came out of it unscathed but was put on three weeks of a blood thinner and was started on 80 mg Lipitor. I continue to take the Lipitor (with no problems) and take a baby aspirin every day. 

I haven’t had any major problems for almost two years, and in fact I’m feeling great. I walk a lot—how much depends on the weather, but often 3-6 miles. My BP is reasonably and consistently low after the addition of a third medicine.

My only ongoing oddity—I don’t know that I’d label it a health issue—is that I often talk in my sleep, and I haven’t done that to this extent for years. I also walked in my sleep, which can be scary but interesting. My main concern is that I not trip and break something.

The upshot of this is that you know your body better than any doctor; if you feel something is wrong, it probably is. Persist until you get answers! And if something unusual happens, please get yourself to the closest ER (probably via ambulance).