We want our husbands to be happy and healthy, sometimes that means we have to fight to get them the care they need. You often hear that you have to be your own advocate when you’re receiving medical care, but what does that actually mean?
Let me tell you a story of how I learned what that meant.
When Brennen doesn’t feel well it’s hard to determine if it’s because that’s just the nature of having renal failure, he’s had a hard dialysis treatment, he’s caught a bug or something else entirely.
Once he’s been feeling sick for more than a couple of days, we start looking for a root cause. What’s he been eating? Did he catch something? Is he dehydrated? Has his dry weight changed?
Back in December 2016, Brennen had a lot of vague symptoms- he was tired, had some abdominal pain, felt generally yucky and was depressed. He does struggle with depression, but not severely, and it usually lasts a couple days to a couple weeks at most. We double checked that the abdominal pain didn’t correspond to the location of his appendix or his failed kidneys, though he didn’t have a fever, so it shouldn’t have been an infection anyways.
We couldn’t pin his sickness down to anything and the dialysis clinic didn’t seem too concerned. We went to Instacare where the doctor confirmed that it wasn’t appendicitis, and didn’t really have any other insights, but prescribed an anti-nausea medicine to help.
This went on for about a month (which included a pretty pathetic Christmas) and finally I put my foot down, this was not right! We went to Instacare again, the doctor recommended an ultrasound and if that looked good, then a HIDA scan to check his gallbladder function. Both tests came back normal. His next suggestion was to see a gastroenterologist.
While waiting to get in to be seen at the gastroenterologist’s office, Brennen’s abdominal pain got bad enough we went to the ER. The ER doctor ordered a CT scan, which came back normal and gave him a prescription for pain medicine. He also suggested seeing a gastroenterologist.
Finally, we got in to see the gastroenterologist and he wants to do a colonoscopy, an endoscopy, and suggested getting Brennen’s gallbladder removed, just to see if it helps. We decided to do the colonoscopy and endoscopy, but leave the gallbladder, since it had already been checked and was fine.
2 weeks later, Brennen has the procedure done and everything looks fine, again. His sickness was still a complete mystery.
We were stumped, so we spent the next month trying to get Brennen as healthy as possible- eating well, sleeping well, taking his food medicine (phosphorus binders), etc. Still no improvement. This had been going on for 3 months by now- Brennen feeling crappy, depressed and sleeping most of the day. Let me tell you, that’s hard to watch, especially when there’s no resolution coming!
Finally, I remembered that I’d been meaning to chart Brennen’s blood work. The dialysis clinic does a monthly blood panel and I’d been saving all of Brennen’s results for the past year, meaning to chart it eventually. This is what happens when your wife is a scientist- she collects your data.
I spent a Saturday afternoon compiling a massive spreadsheet in Google sheets of all Brennen’s blood work for the past year. I was strapped for time, so after I input all the numbers, I graphed it all into one massive graph and gave it a cursory glance to see if anything jumped out, but no luck.
Later that I night, when I had more time, I sat down and looked at the data again. I broke it down into smaller chunks of data and graphed those. Finally, I saw a line that started spiking back in September. The line for PTH. What’s PTH? Parathyroid Hormone.
I looked up hyperparathyroid (hyper= overactive, so high) and guess what symptoms came up: exhaustion, abdominal pain, feeling generally ill and depression. Oh my goodness, I couldn’t believe it! That was exactly what was going on!
I talked to Brennen and he told me that he’d been on Vitamin D for hyperparathyroidism, but had been taken off because his calcium levels were getting too high. Also, it’s so common for renal patients to have parathyroid problems that they actually moved Brennen’s parathyroid into his arm, so if it started causing problems they wouldn’t have to do surgery on his neck, where it’s naturally found.
So, you can bet that Brennen’s next dialysis treatment, I talked to the head nurse, showed her my graph and she said she’d talk to the Nephrologist about changing his medicine, which is what happened. And Brennen started feeling better.
Now, I love this clinic, but I have to admit that I was a little frustrated when I figured out that he’d been suffering from a common renal patient issue, one that he’d had issues with before and that no one in the clinic recognized the symptoms. We spent a slew of time and money going to unnecessary doctors and having unnecessary testing done. Not to mention 3 MONTHS of Brennen feeling crappy, depressed and sleeping all day. Brennen’s still a little bitter about the unnecessary colonoscopy…
What I learned from this experience was to:
Trust Your Gut and Listen to Your Husband
No one knows your husband and his health better than the two of you. Listen to your husband and to your gut. If something is wrong, don’t let it linger. Look for a resolution.
Use Whatever Data is Available to You
I was lucky to have the foresight to collect Brennen’s bloodwork so I had data to work with. If any sort of routine testing is done on your husband, ask for copies or see if you can find it on an online patient portal. Then chart the data and look for abnormalities. The doctor’s office might not be connecting the dots.
The dialysis clinic had all of Brennen’s blood work data too, but they were too busy running the day-to-day clinic things to look for patterns. Part of the reason they didn’t catch the hyperparathyroidism is that Brennen was still within the acceptable range for PTH most of the time, but I could see that he was running three times higher than his normal range.
Research
Once I found something that looked off, I started googling. First I had to learn what PTH stood for, then I researched high PTH. Then I had to dig even deeper for renal patients with high PTH. Renal patients get a special kind of hyperparathyroidism called secondary hyperparathyroidism. I learned all this from googling.
Advocate
Once I had an idea of what the problem was I brought a copy of my graph to the doctor’s office to make my case. It’s hard to argue when you have the data on hand, already analyzed. Help them to connect the dots the way you did.
No matter how great the office/clinic, you have to advocate for your care and educate yourself. No one will care as much about you and your family’s well being as you. Fight to get the help you need!
No one knows your husband and his health better than the two of you. Listen to what his issue is and work to resolve it, no matter what it takes. It takes work, trust, and hope. Don’t stop until you find the best resolution for your situation.
And if your husband’s doctor’s office won’t listen, find a doctor who will. Chronic illness and disabilities are hard enough to deal with, make sure your doctor is on your side as a partner who will listen and work with you to resolve any issues.