That’s good to know.
He just posted today:
https://boards.straightdope.com/sdmb/showthread.php?t=860699
Sorry, didn’t see that this thread was still active.
Well, I lost about 25 lbs in one week,and the swelling went down in my legs, so I figure the blood clots are clearing up. Neither the facility doctor nor the nurse practitioner have been in to assess the dvts. I talked to the NP about 3-4 weeks back. She opined that I should get used to living with the broken vertebrae, LIKE THE OTHER RESIDENTS HERE AT THE NURSING HOME.
I.AM.NOT.A.RESIDENT. I am a PATIENT, one who was supposed to be operated on before I got blood clots on your watch. When I am healthy enough, I will be consulting with a back surgeon again to repair what he can and stop the bone from pressing on my leg nerves that prevents me from standing. These ppl do not seem to care about me getting better and getting out of here.
I have an alarm set on my tablet, beeps every ten minutes to remind me to move my legs. MUST avoid more blood clots. Vital. I think if I cannot stay healthy enough to get my surgeries, it could lead to a very short life in a nursing home, instead of going home as an independent person.
Tuesday will mark 12weeks in a hospital bed. Can’t walk, back spasming, colon flaring and cramping, powerless to do anything. Trying not to go insane. Not sure if succeeding. REALLY not sure.
Some good news. I had an appointment last week with a surgeon. I’ll be having a colectomy at the beginning of October. About five weeks away., so I have to stay sane until the surgery. I’ll have about a week or two after that where I’ll be drugged up, then in pain, then dealing with recovering from the surgery and learning about my stoma, then I’ll be recovered enough to start going insane again. When I’m sufficiently healed from the colectomy, it’s on to back surgery for my broken vertebrae.
Don’t have a surgeon lined up for that yet. Don’t want to have it done locally, gonna try to have it done at Vanderbilt, like my colectomy.
So, I guess that pretty much brings things up to date. Oh, Mom! My sister got her set up at a pretty nice assisted living facility, where she failed to get along. She was loud, swore too much, hit people and made one faculty member quit. She’s now undergoing psychiatric observation. Now that I’m not around, and she is in different surroundings, her dementia is taking a front seat.
Thanks for the interest and concern
Man oh man! It sounds horrible in that place. Keep telling yourself there is still hope. Good luck to you, keep checking in here. We care.
I have an ancient laptop that was my brothers, probably 6 or 7 years old, I would be more than willing to pack it up and ship it if you like. I would need to make a banzai run to Caledonia NY from Canterbury CT between now and sunday at 930 am when I get my death pod removed [youngest goddaughter named my chemo infusion pump that … got to love kids. ']
- No one’s YET told me what I need in a laptop to run Left for dead 2 and Portal 2. I’ll be doing more with it, but those are the most demanding tasks.
B. You probably don’t know what the cpu and gpu is in that laptop, so it might not do the job. We don’t know.
- I won’t be party to sending ANYONE on such a banzai run, let alone someone with a Death Pod!! Us sick folk have got to stick together!
I appreciate the concerns and efforts here. I only wish that the nursing home put forth the same effort. Maybe I’d be home by now.
I can’t eat wheat. It’s a trigger for my Crohn’s, makes me flare, cramp and pass blood. Yesterday, they served me a dinner roll. Today, mashed potatoes with gravy. The assistant Mgr of the kitchen told me time and again to trust him, he’ll make sure I get gluten free meals. He said he had gluten free noodles, so I ate them for weeks. Turned out, they were regular EGG noodles, made with wheat flour. HE NEVER READ THE INGREDIENTS. He thought regular, everyday EGG NOODLES were special noodles made with egg and not flour. He showed me the bag, and clear as day, it said WHEAT FLOUR on the ingredient list, and CONTAINS WHEAT.
They didn’t know the nature of an everyday kitchen staple, and could not be bothered to read the ingredients, even though they were told the pain it would cause me if they got it wrong. , and the nurses were reporting the blood and pain…
Sheer incompetence. No one else has caused me so much pain without answering for it.
Well, we are planing on going to the other home next weekend for Labor Day, so I can bring the laptop back to the farm and double check and prep it for loaning out as I have friends who just surf and email, and I can extract the details just so I can be sure what it is I have on hand =)
Holy shit, what a moron - I have severe allergies to mushrooms and coconut, bivalves [clams, mussels, oysters, scallops and the lot] and have been checking ingredients for lo these many decades [at least 40, when I started cooking for myself and headed to university] I would almost make a list of what you are willing to eat of all their foods, and make them stock up on ‘iron rations’ [for me, the individual portions of shelf stable fruits - I adore applesauce, the diced peaches and diced pears, individual 100 calorie packs of pretzels, instant rice, certain dried fruit, packets of carnation instant breakfast that I mix with dried milk, ground oatmeal, ground flaxseed and a single serve of greek yogurt.] Zofran does let me get a good meal in shortly after I take it, but I try not to overuse it and many days I simply can’t eat at all.
Honestly, you’d have gotten better and more comprehensive coordinated care in my state’s prison system than what you’ve been getting since your initial hospitalization.
You wouldn’t be able to go online though, or use your tablet. And the room decor sucks. 
I’m so sorry for the treatment you’ve gotten at the hands of modern US medicine these days. I’m ashamed of how this system treats so many people.
I used to have a great deal of respect for educated ppl who have spent years or decades honing their craft. Now, I realize incompetence can shine through even all that effort. I’m having to second-guess people way too much, and as someone with a history of Dvts and pulmonary embolisms, I really should NOT have needed to fight with ppl for a week before they’d investigate my leg pain, particularly when I was unable to walk and had swollen legs.
The Nurse Practitioner here at the home said that I should just get used to having compressed vertebrae, like some of the other residents. That just spoke volumes about how she saw me, and told me that if I was to make it home, it wouldn’t be because of her. The only reason I hadn’t had surgery to repair them already was because of the DVTs I got on their watch. Pissed me off the way she was writing me off as long-term resident, instead of someone who was walking around and caring for someone else just two months before, someone who was going to go home again soon as an independent person.
The way they keep feeding me gluten for months - I’m astonished this guy has a job at all. I was experiencing kidney-stone-level pain several times a day for months, and it’s almost entirely on him. Now, the idiot is so pleased with himself for finding ACTUAL GLUTEN-FREE noodles, I get them 3-4 times a week. No sauce or butter or cheese with them, just plain boiled gluten-free noodles. I have never served plain elbow macaroni to anyone in my life. Who the hell does that? The last batch had no sauce, and was boiled into a single mushy piece of glop with only a few discernible noodles showing. They still manage to give me gravy and dinner rolls here and there, though, just to keep me on my toes.
The lesson I’m taking away is NEVER get anything important done outside a major city. You might get a good outcome, but I think the odds are better in a large city, like Boston or Chicago or Pittsburgh or Nashville. The competence and general attitude of staff and medical professionals are very different.
Yeah, as I look at him with his big damn smile and think of what he’s done to me over and over, and the sheer incompetence he displayed, the word MORON springs to mind often. I swear it’s gonna spring off of my tongue one day. I never knew the Peter Principle to strike with such a vengeance. I’m not at all in the habit of talking about ppl the way I’m talking now. They are just astonishingly, bafflingly, consistently bad at their jobs in a way that has had very severe repercussions for my health.
I DID tell them what I could and couldn’t eat. I listed their safe foods that I knew of, I made EASY, SIMPLE meal plans with things I know they have, and gave them a few easy-to-make recipes with just a few common ingredients. They liked it, did it a couple times, and that was the end of it. Now I get plain hamburger patties on a plate for about 7-8 of my 14 non-breakfast meals a week. I’ve tried for three months to get them to put LOW-FIBER on my diet as well. I’ve told him 5 or more times, each time he says he will. Each time I can see on the form that comes up with my meal that he didn’t. That and all the salads kinda give it away. Crohn’s patients, particularly in a flare, do not need a lot of fiber.
Well, if you’re going there anyway and you’re willing, we can check the laptop specs and see if it measures up to PROJAMMERS minimum specs. If it does, we’ll discuss what I can give you for it. I hope the effort doesn’t put you out much. Thank you.
Is there any way you can be transferred to another facility? The way you are being treated there is beyond disgraceful.
I went through that whole leg pain / dvt thing. They kept saying that the pain was from disuse. They finally did an ultrasound and found a dvt.
Are they giving you anything to prevent dvts? Maybe heparin or Lovenox?
I’ve been hiring and firing and supervising and evaluating physicians for decades now, and honestly, physicians are just people. Perhaps a bit more idealistic AND arrogant than average at the same time, which can be a deadly combination. And some are entitled idiots. Less than half of them are as good as they think they are, and the best ones are those who know their limits and their areas of expertise, and are capable of listening to the patient. And too many have accepted their role as cogs in a profit-driven medical machine, instead of being there to determine what their patient’s legitimate needs are medically, and advocating for them.
I’ve often fallen short in those ways myself, but I try to do better.
Will do.
Any chance of getting some sort of lawsuit against these morons?
My hopefully all-inclusive response. . .
I’m poor. This is what happens to the poor. The LUCKY ones. Last year, I was on the insurance exchange, paying for insurance. I had a hefty deductible, but all I did was get one of my biologic infusions as early in January as possible. They were ~$15,000 each, but the company forgave anything my insurance didn’t cover, in such a way that my deductible was covered. After that, things were dirt cheap or free. I chose the insurance with a high deductible and low-everything-else, knowing I could do that. My insurance was pretty damn good the previous 3 years, buying off the exchange. Interestingly, every year I had to choose a new insurance company, because they kept withdrawing from this market at the end of the year.
I won my SSI case last fall, and that put me on medicaid in one of the deepest red states. Nice not to pay monthly premiums for it, PARTICULARLY given the events of the last three months. Probably would have lost insurance by now if I were still paying, but damn, this insurance isn’t as good. I lost both my surgeon and my GI doctor of three years because of it, and I’m getting screwed around on the nursing home/rehab front. Not everyone takes this insurance, and I don’t think I have any other options in this town. I can’t transfer, I can’t walk out. I’m basically stuck here no matter how bad things get. I’ll ask around when I go to Nashville for my colectomy, but I doubt much will come of it, and I’ll end up back here.
I just gotta get operated on and get home. I don’t think I’ll ever agree to such a nursing home stay again, regardless of the outcome. Three months in already, and it’s five more weeks until my colectomy. After I recover from that, I need surgery to repair my vertebrae and rehab on that, so I can walk. I won’t be home until after Thanksgiving. I only hope I can avoid another blood clot. I fear a blood clot death-spiral. I have a ten-minute timer on my tablet to remind me to move my legs.
RE: blood clots and thinners. Yeah, I’ve been on thinners for years, and they adjusted it after my clots. They were ENTIRELY too confident in my old blood thinner. They felt that I could not get a blood clot because I was already on a thinner, so much so that they ignored my complaints of leg pain and, “Something isn’t right” for over a week before they tested my BADLY swollen legs
I don;t think I could scrape together any sort of case against this place. I’d have to prove they were giving me gluten and causing me pain for months, and while I have pictures of some of those meals, I can’t prove they weren’t gluten-free versions of those foods. Maybe I could do something about the blood clot I got on their watch. Likely not though, not the first time. If I get more clots, maybe my next-of-kin might have a case.
Thanks again, ARUVQAN
What happened with me and the dvt was that they ignored the leg pain at first other than giving me pain meds, which didn’t help. I assume they thought that it couldn’t be a clot because I was getting daily heparin injections.
When they finally discovered the clot they changed me from heparin to Lovenox, which eliminated the pain almost immediately. So it’s not a good idea to assume that you can’t have a clot because you’re on an anticoagulant.
Well. I knew full well that I had a clot. It really could not have been much of anything else, given my history and my current state of health. The damn doctors were sure that it couldn’t be a clot, though.
I am surprised that you got one on heparin though. Thought that was pretty effective stuff. Maybe they didn’t have the dose right, or I’m simply incorrect about my heparin notions.
I’m kinda paranoid I’m going to get another clot before my next surgery. I’ve got a tingling in my right calf the past two days. I wonder what the risk would be to have the colectomy with a leg clot, given that I have a Greenfield filter in my inferior vena cava.
Yeah, I hope everyone reading this comes away remembering that blood thinners are NO GUARANTEE, and that they will be willing to push back when they think they may have a clot.
I’m not any kind of medical professional, so this is all surmise on my part, but the impression I got was that, while heparin is good, Lovenox is better but it’s either more expensive or more dangerous (or both) so it’s only used in cases where the heparin hasn’t been effective enough.
iirc from my pharmacy tech job, a dose of Lovenox was in the hundreds of dollars, whereas heparin was measured in dollars, or tens of dollars. of course, that was quite some time ago, and Lovenox might have a cheap generic by now.
What I take from this thread is you’re (FILB) insanely depressed, humble, thoughtful of others, and alone. You sound like you’re abhorrent of self-pity to the point you aren’t, or hadn’t, as of the last post I read really forced your personal health and needs on others. I’m almost wondering if you’re more frightened of accepting being dependent and under the control of the hospital than you are of inadvertently dying from poor health at home. Actually, I take that back. You sound more likely afraid they’ll throw you out again and leave you to die, which would be even worse. It gets harder and harder to believe you’re a human being when no one will help in a time of need.
Before you devolve into a gibbering mess, I’d suggest doing the seemingly humiliating/shameful thing of asking a family member to help. As in, tell them exactly how bad it is. Someone who can visit multiple times a day and make phone calls until this is sorted out.
From personal experience, I can say I always believed there was no limit to a person’s willpower and sanity. I thought as long as I trudged ahead there was no breaking point. For most of my life, this worked out pretty well and I survived some insanely screwed up things. But, I’m questioning that logic these days. I have a sense in me that there were times, under the right conditions, I could have had a psychotic break just long enough to really end my life, or maybe done something awful in desperation like a third party watching a movie of myself in that moment. And you, sir, are under an incredibly large amount of stress both physically and psychologically. (Apparently, according to your posts.)