I was incorrectly diagnosed with MCD at first. I was treated with Prednisone on and off for years, and I didn’t tolerate it well. Bluntly put, not only did I become [more of] a vicious b!tch, I had unbearable heartburn that turned into ulcers, I gained back some of the water weight I’d lost, and was puking up a storm. The insomnia compounded all of those issues.
I had been in the ER five times with my eyes swollen shut and almost immediately sent home with benadryl, but was finally referred to a nephrologist by my Mom’s doctor, who ordinarily didn’t see anyone under 21. The crappy part was, at some point my pediatrician had noticed proteinuria, but didn’t follow up on it. Nice, huh? I was losing 30 grams daily at one point. I lost a bunch of my hair and had to be put on diuretics to take all of the water off. It turned out to be 100# of it; more than a cubic foot. I’m a bit over 5’2”, so that was hard on me. I’m lucky that my nephrologist is excellent, and he functioned as my primary for a long time.
I am aware that insurance will be costly. I’m concerned about what happens if my inability to work persists and I can’t acquire it through an employer. If protection (i.e.: Coverage cannot be refused on the basis of a PEC) is removed, how likely is it that I will be denied coverage even in a high-risk pool? I assume that it has happened. I’m currently covered on Medicare because I was on dialysis, but I’d like to go back to work eventually. If I do, I lose Medicare and have to wait however long before any employer-provided insurance kicks in (30-90 days) and that’s if insurance is provided. Even that short time is not affordable for me, and my husband’s insurance may as well not exist with a $10k deductible and covering 1% of doctor’s appointments and 50% of ER cost. I have no clue what medicinal coverage is, because my husband doesn’t take any. (I kid you not. It’s terrible.)
I can’t even start with regarding whether or not my doctors are in-plan. I’ve been seeing them for almost 20 years, and I’d rather not switch, especially when they save me money by allowing me to diagnose my own infections and other recurring conditions.
“I was incorrectly diagnosed with MCD at first.”
Was that a nephrologist? And did they do that without a kidney biopsy? That would be malpractice IMO- the only way to identify MCD is electron microscopy of a biopsy. Otherwise they are just guessing.
Prednisone doesn’t work on FSGS. A big reason why your docs should have worked harder on a correct DX. And high dose Prednisone should always be given with omeprazole or it will burn holes in your digestive system. Prednisone causes Cushing’s Syndrome, which was the weight gain you experienced. The vicious bitch temper was again Prednisone- I don’t think doctors warn enough about this effect. I had to constantly fight to suppress my temper when I was on it. And it was a daily battle. I avoided going anywhere because of the irritability and impatience Prednisone provokes.
“The crappy part was, at some point my pediatrician had noticed proteinuria, but didn’t follow up on it. Nice, huh? I was losing 30 grams daily at one point.”
Unbelievable. Except that I’ve experienced it myself. GPs fail to DX nephrotic syndrome. Proteinuria is the big flashing neon light announcing its presence and somehow they don’t see it. Spilling 30 grams is deadly. I think I was spilling 14 grams and that was bad enough. My blood albumin had dropped to just over 1 g/dl... a big stroke risk... 4 g/dl is normal. Albumin acts as an osmotic barrier keeping water in the bloodstream where it belongs. When you lose it you get the massive edema as water escapes into surrounding tissue.
High risk pools are for PECs and the hard diseases insurers don’t want to take on. Even with insurance I racked up unpleasant out of pocket expenses- biopsy copay. Copay for the all too often complete blood panels. Copay for the constant doctor visits. It got expensive in a hurry, but you don’t have a choice. Before that becomes an issue I’d check around for FSGS support groups to see what help they might have discovered. Line something up before it becomes a crisis. There’s a site I sometimes found helpful, has a lot of NS, MCD, FSGS posters. https://www.inspire.com/