morgan_dhu | Life is hell

I've mostly been reporting on the state of my health on Facebook, but seeing that I haven't posted here for a while, I figured I ought to try to bring the saga of my deteriorating state of health up to date.

So... Back in late May I was diagnosed with primary hypercalcemia, which means that something had gone haywire with my parathyroid glands and they were producing too much of a hormone that leaches calcium out of the bones at a rate that is not only very bad for your bones, but cannot be properly excreted. As calcium builds up in the blood, you get increasingly sick, and can end up having seizures and nasty life-threatening shit like that.

They did various kinds of imaging on my throat and while the pictures were a bit inconclusive, they figured it was provably due to one or more adenomas, non-malignant growths on the parathyroid. So they put me on the list for a surgery slot to have the adenomas excused from my parathyroids, and monitored my blood calcium closely.

While waiting for surgery, I fell and broke my foot. Back to the hospital. My foot was placed in this rigid boot that has a heel and unbalanced me to the point that even after I was ok'd for weight-bearing exercise, I couldn't balance on my uneven feet well enough to stand.

After about three weeks in the hospital, during which I developed a nasty UTI that would ultimately stay with me for the next four months, still unable to stand, I was transferred to a rehab hospital where I would receive regular physiotherapy. which would be of very little use because I'm still wearing this big-ass boot that destroys my balance. In the meantime, i get shuttled back to the hospital a few times, to have my calcium levels lowered (intravenous drugs plus massive IV fluids to make me pee out the calcium) and to have my foot monitored.

Once the boot finally comes off in late September, I start to make real progress with the physio - I'm shaky, but walking. Then.... Remember that UTI? They've been giving me courses of various antibiotics to try to kill the bugs in my bladder, and it's been coming back every time. They try a new drug, to which I have a seriously bad reaction. For about a week, I'm so weak I can hardly move, plus nausea and a bunch of nasty stuff. Can't manage the physio - haven't enough strength to stand.

It's now mid-October. They decide to send me home from the rehab hospital because I'm no longer benefitting from treatment. Once I get home, and get over the drug reaction, we find a private physiotherapist and start working on walking again. i just start to get my strength back and I'm walking a bit, when I get the call that I have a surgery date. November 17. Back to the hospital. UTI is back, too.

The surgery ends up being much more complicated than expected, because once they have my throat slit and they can see the parathyroids, they discover there are no adenomas. While adenoma is by far the most common cause of primary hypercalcemia, if it's not adenomas, it's probably hyperplasia of the parathyroids, for which the surgical solution is to remove 3.5 of the four parathyroid glands, a sonewhat longer and more difficult operation.

I come out of surgery with unbearable pain in my abdomen and groin, for which they plug me full of fentanyl, which does nothing. Eventually, they try something in the same family as ibuprofen, but stronger, which works some. Recovery is slow and problematic. The fentanyl gives me very bad constipation for three days, the abdominal and groin pain lessens but does not go away, I'm weak as a kitten and.... My calcium levels are not falling as they should. They do the IV drip to lower my levels again and after a few days, they send me home to recuperate, ordering continued monitoring of my calcium.

Meanwhile, I'm developing painful bedsores on my butt - a new thing, even though I have been pretty much confined to bed fir years. And the UTI is still bothering me. And I'm having fevers and chills snd on-going abdominal pains and all sorts of stuff, and I just can't seem to get any strength back. My doctor prescribes a long course of yet another antibiotic, which seems to finally mostly clear the UTI. All the other symptoms continue, and despite doing all the right things, my bedsore do not heal.

Regular blood tests show my blood calcium is still rising - and now there's a new twist. I'm suddenly seriously anemic, my hemoglobin is way lower than it should be, which is probably the reason for my extreme weakness and the impairment in normal healing.

Which brings us to now. The last blood test showed a very small drop in calcium levrls, I'm on iron supplements which should bring up my hemoglobin over the course of 4-6 weeks and hopefully help me regain my strength snd heal the sores, and my doctor is working on getting me a consult for the hemoglobin issue.

Oh yes, during all of this I've lost about 20 kilos, which when added to the 50-odd kilos I've lost over the past few years has resulted in a lot of loose skin that tends to crease and fold in an extremely painful way. Add to that the pain from the bedsores and I'm having extreme trouble sleeping. I'm lucky if I get four or five hours of sleep in 24. So I'm now exhausted and almost braindead. I'm in great pain all the time, from half a dozen different things that are going wrong. I'm depressed and just plain tired of trying to keep going, to the point of wondering how I might go about persuading someone that I really am a good candidate for assisted suicide, which is now legal, though under very limited circumstances, in Canada.

As the title says, life is hell.

Life is hell

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