If you've missed any parts of this saga, you can catch up with the links below:
Part 1 (April & May)
Part 2 (June)
Plus (Baby's First Coloscopy)
Part 3 (July)
Part 4 (August)
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Well, it's the end of another month...
When we last chatted, Hubby was stuck at home on Leave because Home Office sucks and can't get their paperwork done in a timely fashion (all while demanding that we get our paperwork done in a timely fashion).
No, I'm not frustrated, what makes you say that?
Anyway, he went back to work on September 7th and was then waylaid with nasty vomiting and gastrointestinal problems again. He was able to do a few more days at work the following week, and then two more days the week after that.
On September 22nd he woke up with knee pain, leg pain, and a swollen knee, which - of course - led to more time away from work.
On September 25th, I took the entire day off for a few different doctor's appointments. I had to come back to Woman's Imaging for a left breast ultrasound, and under the advisement of the scheduler, they said that there would be plenty of time for me to get this done and have time to go to the next building for Hubby's GE Consult. Yeah, that didn't happen. They were already running late when we got there, and once I was up on the table there was a lot of Hmmming being done. They were interested in an odd-shaped area near a lymph node. The Tech took a bunch of photos and then called in the Radiologist, who also did a lot of Hmmming, and declared it a regular ol' cyst. I won't lie... I had a few minutes of oh shit, is this really happening? While the Tech went to go get the Radiologist, I'd texted Hubby that I was running late, and that he should go over to his appointment so he didn't miss it. When I was fully dressed and went back to the lobby, he was sitting there waiting for me. As we walked over to the other building, he said that there was no way in hell he was going to leave, because he didn't know if I was going to come out of there with bad news, and he wanted to be by my side. Awww, but still...
Because of the too-long appointment, we were too late for his GE consult, but we were able to reschedule it for later in the day after the appointment with Dr. L. So we went home and I had some time to decompress from the "near-miss" of the morning.
The visit with Dr. L revealed that hubby's protein and creatinine were both still too high. She changed his diruetic from Chlorthalidone to Spironolactone, which may be better for his kidneys. Even better, though, is that she reached out to a company called Natera and secure a full gene panel test for us for free! These tests are usually around $1000! She's hoping that maybe whatever's causing Hubby's problems are genetic and can be dealt with, because if not, the next step is a Kidney Biopsy, and Hubby absolutely pushed back on the idea of that. I'll have to work on him... we can't just watch his kidneys get worse and worse and not know why. Again, he was told to watch his diet and blood pressure, and return in mid-October after the genetic test and a round of labs.
Well, there was no time to eat lunch at this point (unless we ate it in the car, and who wants to do that), so we went over to the GE appointment (remember, this is in relation to the Left Lower Quadrant pain, not the Kidney issue). As expected, the doctor has no magical diagnosis for us. Every question she asked was a dead-end. The only suggestion she had was to go do an x-ray to look for any possible bowel blockages, but she surmised that whatever is causing his pain my be due to abdominal wall issues (i.e. muscles, not intestines), and not her body parts to treat. She suggested using capsaicin or lidocaine pain reliever creams, or heating pads to treat the pain when he has a flare up. She seemed to ramble a lot as she spoke, but I think it was because she didn't have any definitive answers for us and she felt bad; we told her it was okay, that we didn't expect her to pull anything out of a hat, and that seemed to get her to stop rambling. We shared with her that he'd already had a coloscopy, as well as an Ultrasound, a CT Scan, and an MRI, and she asked that I send those reports over to her (I did that a few days later).
Over an extremely late lunch at Culver's, we had a lot to talk over, and I said that it might be time to stop the LLQ wild goose chase and just learn how to deal with it. He hasn't had a pain flare-up in a few weeks, and knock on wood, maybe they're gone... He agreed that he wanted to stop, because he saw how it was affecting me... I worry about him, I worry about money, I have to take time off of work, I'm not taking care of myself, it's all so overwhelming. I said that it's better that we focus our time on taking care of his Chronic Kidney Disease, get that under control, and deal with whatever random pain may come. I made a mental note to pick up some pain cream next time I went to Walmart.
Oh, and to add to the stress? I got a text message from work telling me that our offices would be closed starting September 26th because of Hurricane Helene, and would also be closed the next day as well. And y'all know me... I hate hurricanes!
On September 30, we went and did the Natera genetic testing, which was amazingly simple! Just a single tube blood draw, done by an amazingly charismatic nurse. Again, Dr. L swears that this will be free to us, but I'm interested to see if they'll even try to bill our insurance or not...
So, that's where we are. We may never know what caused - or is causing - this mysterious abdomen pain. But it's too frustrating to keep trying to find a cause. It's time to put all of our attention on him getting healthier and taking care of his kidneys. Here's hoping Hurricane Helene leaves us alone, too!
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