Signal Wave
Hey, guys.
Kate has been doing very well. I won't give you all the details, but she is coming along swimmingly. Both the pancreas and the kidney are functioning well. There was one setback early on, but it turned out that her dialysis catheter (which they had left in) was impinging on the space where the pancreas needed to be. It was also winding around her intestines, so I'm really glad that was taken out.
Since then, things have been going really well, and they're thinking of discharging her on Monday. After handling the logistics of diabetes+dialysis, the logistics of transplants (twice a week hospital visits and medication management) seem almost simple. I am not taking it lightly; it's just that we were in a really tough place already, so now the demands on us seem comparatively easy. It may seem easy because a couple of weeks ago we were not only dealing with the combination of dialysis and diabetes, but also dealing with the loss of Kate's insulin pump. The reseller refused to replace her pump when it broke.
In other words, some bureaucrat at a diabetes supply reseller (who is NOT a doctor) decided Kate was too fat and too old to be a Type 1 diabetic (who are all children and not overweight, in case you were wondering), and that he "didn't want to lose his Medicare contract for a type-2 diabetic." He put that note in her file, Medicare noted it and said Kate had to go through a test to prove she was a type 1 diabetic. In order to take that test, her blood sugar had to be under control, and we had no pump to control it with. She had to transition abruptly from the insulin pump she had been on for twenty years to giving herself boluses of insulin manually, with needles, while flooding her body with sugar water every night in dialysis. (Her glucose monitor often gave no number during this time, merely saying "HIGH." Those of you who are familiar with diabetes will know how bad this is. It generally means your blood sugar is over 400.) She eventually had to forego dialysis one night in order to take the test to prove she was type 1.
In case you're wondering, Kate was first diagnosed as type 1 thirty-six years ago.
So this guy who has no medical training whatsoever was able to put my partner through days of intense stress, pain, nausea, and no small amount of danger. And this during COVID, when I felt I absolutely could not take her to an emergency room.
This experience has opened my eyes to the crazy disparity between different aspects of the American medical system. When they are within their wheelhouse, and choose to exert their talents on behalf of somebody's health, they are magnificent. Practically miracle-workers. (Their wheelhouse, in my opinion, is surgery and the fabrication of medical machines). However, complaints which cannot be solved with a piece of medical technology or surgical intervention, they do not do so well at. And worst of all, (as all here know) the economic and political bureaucracy surrounding medicine is horrendously corrupt, rife with unaccountable authorities and even people who aren't authorities who can assume authority because they feel like it one day and wreak havoc on another person's well-being.
I am more grateful than I can say to all those involved with Kate's transplant, from the donor's family to the surgeons to the nurses and support staff. It is surreal to hold the truth of that experience side-by-side with the noxious experience we were having beforehand, and know that both are real.
I am also grateful to all of you for all the good wishes you have sent us.
Blessed be!
Comments
Yay for Kate and y'all
sometimes good things trend
hope it remains so!
Thank you, QMS
I hope the woods are treating you well!
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
From someone who had an experience with mis-diagnosis
I had a very rare condition called Atrial Myxoma (a non-cancer tumor in my heart) I can tell you that I can tell you that plenty of "good" doctors who are operating within their wheelhouse get stuck there and fail to see the big picture. I was walking around with this "time bomb" in my chest for at least two years while being tested poked and prodded for a number of conditions not even close to what was truly wrong with me. I was finally diagnosed by a physicians assistant who had seen one of these rare tumors in another patient earlier in his career! How did he do this? He put his stethoscope under my left arm and listened to my heart from the armpit. All those other doctors were trained to do this in med school and failed to do so. How often have you had a doctor put the stethoscope in your armpit? I bet your answer is never. He let me hear the difference. The heart beat should sound like "flub dub" and mine did from all the normal places. From under my arm the sound I heard was "flub shsssssh dub". This lead to me getting open heart surgery ASAP to remove it. The heart surgeon told me I was truly lucky as they usually find those things during the autopsy after a massive stroke kills the victim.
Jesus Christ!
Thank god for those who still act like scientists--in the good way.
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
Wow. Glad you made it.
good news...
Have you heard of Dr. Richard K. Bernstein? I think he is the longest lived person with type I.
I came across his name and looked him up. He might be a resource to help you?
http://www.diabetes-book.com/
There are several articles on the website above. He is the Type 1 guru evidently. Take it for what it is worth.
All the best to you both!
“Until justice rolls down like water and righteousness like a mighty stream.”
Thanks.
I'll pass that on to Kate--though technically, assuming the pancreas continues to integrate with her body, she isn't a diabetic anymore.
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
Yes, Bernstein is first-class!
See hus extremely helpful book Diabetes Solution (my short title).
See also Ruhl's Blood Sugar 101 (2nd ed) -- and her long-established strong website where you can learn a lot from individual posters.
people simply don't understand the power of diet
Diabetes T2 does not have to be a lifelong condition. It can be corrected by diet fairly easily. Type 1 is a horse of a different color but can also be controlled with diet. We are so misinformed about how we can influence our own health. A script of some sort is the preferred method. More money in that approach.
People think we are misled about politics. If they only understood the way we've been manipulated by big Ag, pharma, and medical insurance to kill ourselves with an unhealthy diet, we could change the health outcomes around the globe.
Thanks for the affirmation!
“Until justice rolls down like water and righteousness like a mighty stream.”
Good morning CSTMS. So sorry to what what that moron
put Kate (and you) through, but very glad it's been resolved and Kate is doing better now. One is tempted to suggest that you find out which jackass at Medicare chose to elevate that clown's baseless leap of idiocy to the realm of actionable items and have a note put in their file to the effect that they chose to take their untrained and groundless decision over that of the original medical doctor (and any intervening ones) and punish the client instead of said supplier busybody who endangered his client's health further.
I hope nothing of this type ever comes up again, but the ignorant moron who made that decision is several decades behind the curve and should be required to have a minimum level of education on the subject before being allowed to do anything but rubber stamp orders. The Type 1 versus Type 2 distinction is over-simplistic and out of date. Diabetes is much more nuanced than that. I have a little sister who is neither, something still somewhat indeterminate which she sometimes calls Type III. They have tried to give her a pump but she won't take one due to an algorithm glitch they have which can kill somebody like her in their sleep as happened to one of her friends with a similar condition.
be well and take care
That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --
Wow, I hadn't even thought of that.
Kate has already spoken to his manager, who seemed quite surprised at what the guy had said. She asked Kate "What do you want?" Kate said, "I want you to review his calls." "That's all?" "That's all," said Kate. I have a feeling asshole is going to lose his job. It's pretty easy to replace someone who is essentially doing call-center work, these days. Way easier than it would be for the company to continue to risk extremely bad PR.
As for Medicare, I had never even thought of taking it that high. I will talk to Kate about it.
While it was going on, my mom, who is the least litigious person in the world, wanted to see if we could do something that would lose that company its Medicare contract. Perhaps a very noisy lawsuit?
I'm really glad that whole situation is over. It weirdly made the anxiety of the transplant a lot easier to bear, since her being put in ICU meant that she was no longer in danger from high blood sugar or not getting the right amount of insulin at the right time.
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
Well, he *shouldn't* be allowed to do anything
except rubber-stamp orders. Honestly, nobody at those companies should. How a person is designated should be between themselves and their doctors, and by the time they're in their forties, there should be a wealth of archival medical data from their lives to date which can be used to verify how they've been previously diagnosed. This is not fucking rocket science. In fact, the people who make and sell diabetes pumps shouldn't be directly dealing with diabetics in the first place! They should be selling to doctors and hospitals (or, under an MFA system, to the government). The decision of what medical technology a person gets should be determined by scientific fact *and* established medical history (w/paper trail), and the decision about whether or not they get it should be in the combined hands of doctor and patient, each of whom gets veto power based on different things (technical and scientific expertise on the part of the doctor; natural rights and freedom of choice on the part of the patient). The re-seller of diabetes pumps should have no authority to decide who should have a diabetes pump and who shouldn't.
Thank you for the information about diabetes which, despite living with a diabetic for the past fourteen years, I did not know. I also didn't know about the glitch in the insulin pump.
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
I'm not sure of the details at all, but most pumps provide
a continuous metered amount 24/7 plus a slug at mealtimes. If, for some reason, your blood sugar drops significantly while you are sleeping, the pump will keep pumping insulin and drive you into a coma, or something like that. Not sure what can trigger such a drop, though it is my understanding that a bedtime cocktail or two can do it.
be well and have a good one
That, in its essence, is fascism--ownership of government by an individual, by a group, or by any other controlling private power. -- Franklin D. Roosevelt --
Thanks to all. :-)
And good morning!
"More for Gore or the son of a drug lord--None of the above, fuck it, cut the cord."
--Zack de la Rocha
"I tell you I'll have nothing to do with the place...The roof of that hall is made of bones."
-- Fiver
Sorry to hear of all the troubles
your partner and you have been put to. Really emblematic of our healthcare system. Hope things continue to get better for you both.
"You can't just leave those who created the problem in charge of the solution."---Tyree Scott
chat going on
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That's good news
I'm glad Kate is doing better!
C99, my refuge from an insane world. #ForceTheVote