Note: I started writing this before midnight on January 22, but now it’s the 23rd, which throws off some date references below. When I say yesterday, I’m referring to Monday, January 21.
It is much harder to keep a straight record when you or someone you love is in the hospital, than it is when you have regular doctor appointments, because so much happens every day. And days begin to blur together. So I apologize if some of this seems out-of-order, and for the length. And if you see the name Claudia anywhere, my computer spellcheck is positive I mean Claudia instead of dilaudid.
The hospice doctor came back today even though she’d been explicitly told NOT to; the PAs as well. She listens to T’s heart which then gives her something to bill her time through — nearly $500 — and mostly tries to spend her time asking T leading questions to try to get her to agree to hospice, even though T is often not lucid or awake enough to have a real conversation, so is at quite a disadvantage.
Or to tell Mom that we’re terrible for not putting Teresa on “comfort care” despite Teresa’s many protests against it, her many statements that she wants to live and doesn’t want treatment to stop — which it will on “comfort care” or full out hospice.
Dr. Ella Meade has no respect for Teresa’s wishes or ours. So today I called the insurance and told them what was going on. It’d be one thing if Teresa decided she was done and wanted hospice, but that hasn’t happened. And for her to bill nearly $500 (of which we owe about $165 per visit) so she can listen to her heart (which her regular nurses are already doing) and criticize us and try to trick Teresa into agreeing to “comfort care”? NOT COOL.
I tried to call the hospital too, to ask who I needed to speak with to get Ella Meade off of T’s case. I ended up talking to Teresa’s nurse of the day, who responded as if she also thinks we’re being ridiculous about allowing Teresa to continue to receive care, and told me she had no control over who was on T’s case. WHICH IS WHY I ASKED TO SPEAK TO SOMEONE WHO DID HAVE THAT CONTROL!!!
It is so difficult to do anything useful or helpful in this hospital.
Yes, I still want to see if we can move her to Carilion in Roanoke, but she needs to be more stable first. And if I CAN get her surgery elsewhere, I’d hate to have her go through 2 transfers.
I spent several hours last night watching my Teresa sleep, with heavy, shallow breaths. And she sleeps with her eyes open, which is generally creepy anyway, but with how much weight she’s lost, it’s particularly disturbing.
Her blood pressure was low. This was aided by her doctor yesterday giving her a small shot of dilaudid on top of all the other dilaudid. And where they’re essentially starving her…. malnutrition. Which is followed by low total protein, which is followed by low albumin. Which is followed by…………..low blood pressure. And they are just so ridiculously unconcerned about fixing the malnutrition issue.
I actually had to resort to using the “foot bone’s connected to the leg bone” song to make my point with a doctor. And remind him how weak we, as presumably healthy adults feel, if we don’t eat just for a day. That seemed to make a connection.
I keep getting it explained to me, like I don’t already know, that the tumor is compressing her stomach, and a reminder that she’s thrown up 4 times now. And there could be aspiration.
Yup. 3 of those 4 times the hospital did things that made her vomit. The fourth time was yesterday or the night before that. She was very thirsty, and drank Gatorade too fast, on top of having eaten some other things.
She was aware she was going to vomit, stopped drinking, and got hold of the vacuum tube to suction her mouth/throat, that is available for her.
She has yet to aspirate. She does not have aspiration pneumonia.
The amounts she has received through the tube have never made her feel nauseated. Even when she was getting almost 1900 calories/day. Still not enough for her to really get her needs met, but way better than 0-480 which is the usual lately.
Today’s nurse said they’d never stop feeding her. REALLY? Are you really going to tell me that when she’s gone through several multiple-day periods of NPO? (nil per os; nothing through the mouth.)
When I say her BP has been low, I don’t mean low but not bad. I mean LOW. Last night it was staying around 80/49 with the MAP (mean arterial pressure — that’s the number in parentheses after the BP) between 53-61. Sometimes the top number was down to 78.
This morning her BP was 77/53 (62).
Mom talked to her doctor yesterday (Dr. Bolland, who was her doctor this past week, and the one who told me I needed to come down for THE TALK on the 13th) about Vitamin D. My older brother, Brian, has been so helpful in sending us really good scientific articles which help us back up what we’re asking for. And one of them mentioned that low Vitamin D can cause delirium. A few… months, maybe, before T was admitted to the hospital, we’d asked Dr. Musgrave to do a vitamin D test. She ended up doing 2 because we never got the results of the first one. Then we never got the results of the 2nd one!
But it’s likely she could be deficient. I know I was when I did a home test through Dr. Fuhrman’s labs (do the test and mail it back in). I was at the very bottom end of extremely low. Studies, for the US and worldwide, regularly show large numbers of people are deficient, so there’s a good chance she is too.
If you’re asking your doctor to test you, be sure you ask for the right one. There’s more than 1 Vitamin D test, and the wrong one can give you a false positive. The most accurate way to measure how much vitamin D is in your body is the 25-hydroxy vitamin D blood test.
It’s also important to take K2 with your Vitamin D. You’ll still find plenty of doctors not aware enough about this to tell you though. Vitamin K2 activates a protein which helps your body put the calcium from Vitamin D in the right place (bones) as opposed to your arteries. (https://info.dralexrinehart.com/articles/vitamin-d-and-vitamin-k2-benefits-connection)
I searched for a long time to find a Vitamin D + K2 combination that was safe for me. When I finally found one, I showed it to my PCP in Bristol, VA, and she said it was probably the best one I could have chosen. You can find it on Amazon. (But do get the correct Vitamin D test first.)
So they’ve started giving her Vitamin D. Mom’s still working on the K2 portion of that, but it won’t be an immediate risk so we have some time to convince them about K2. They also started a Vitamin B — don’t know which ones.
And one good thing with Teresa sleeping so much, she wasn’t pushing her PCA, so she was only getting the continuous dilaudid, so if she was getting overdosed on it, which seems likely, those levels could hopefully go down.
I found an anabolic steroid which has a long history of helping patients with cachexia (regardless of the source — AIDS, Cancer, Rheumatoid Arthritis, etc). It’s not covered by T’s insurance formulary, nor is it in the hospital’s, but it does come up through GoodRX with WalMart and other stores for around $155/30 day supply, which isn’t bad. I would gladly pay that out of pocket to give Teresa a chance to try it.
Since it’s not part of the hospital’s pharmacy though, we can run into trouble there since they like to use in-building drugs, not ones you bring from home. (More money for the hospital!) BUT, Dr. Holt said he would go see what he could do.
Yes, steroids can have undesirable side effects, but this one is known to have milder reactions in women. And . . . Teresa just does not have a lot of options left as long as the tumors are still there. If they can get her this steroid and it helps her gain back fat and skeletal/lean muscle mass, it will help make her more stable and improve her quality of life. And it will make her a more viable surgical candidate.
If we don’t try anything, we’re going to get the most undesirable result: death. So as long as Teresa wants to try, we’re going to try.
Yesterday she was moved to IMU, where the nurses have fewer patients and can provide better care. Honestly, I think she should have gone to IMU from ICU in the first place, but I couldn’t get anywhere with that.
Today, to our surprise, her nurse and Dr. Holt decided to stop the dilaudid altogether. They turned off the continuous drip and unhooked the PCA. We never would have suggested it because they are all about the pain meds.
Teresa was asleep at the time and resting comfortably — not the harsher sleep and breathing of last night — so it was a good time to try. They wanted to see if it would help bring her BP up. I’m interested to see if it unfogs her mind.
That was before 4p. At the time of my writing this, she is still not receiving any pain medication — and is not having any pain. The nurse has even asked her if she was having any pain, very straight forward, and Teresa said No.
Mom has learned, by being with her nonstop, that she says “ow” or “help” or moans, not because something necessarily hurts, but it feels good to her to make sounds, and those were easy sounds to make. But then it’s up to whomever is there with Teresa to figure out what she actually needs or wants. The nurses/doctors don’t take that time; they just go right for pain meds. Until she’s got loads in her system, and when it actually does hurt, she can’t explain where the pain is. They don’t even bother to try alternatives to pain control.
For example, Teresa’s back hurts a lot. This is not a surprise, because the hospital has ZERO goals for her. Unless you count bed rest as a goal. So she never gets to get out of bed or anything, and is in nearly the same position every day. Big surprise (not): her muscles all tightened up.
So Mom tried gently massaging Teresa’s back a few days ago — and it was all she needed. Didn’t need drugs at all.
Today when she’s saying “help” she has meant “I want ice chips to suck on”. Sometimes it means “I want a popsicle”.
Shortly after Mom told me about the dilaudid stoppage, Dr. Holt called me with another one of THOSE phone calls: The end is upon us. He said he sincerely hopes Teresa makes a liar out of him though.
Here is the outcome of that call:
1. They will increase the feeding tube by 5mg at a time, instead of the usual 10mg, and the usual increase period is every 6-12 hours. They may do it a little faster than that since it is a lower dose. This is not ideal but it’s better than not increasing it, so . . .
2. They will move her to ICU and start vasopressors to see if they can bring her BP up into safe levels. The concern is that the only reason it’s dropping is the tumor, which means that they can’t do anything while the tumor is there. But if it’s not just the tumor — if it’s opioids and malnutrition, there’s a chance to stabilize her.
3. He would get a unit of blood started to see if it would help her BP go up, and he let me know he’d given her more IV fluids for the same reason.
4. Tomorrow (today now), I will see if I can contact the hospital in Connecticut and hopefully get them to accept her as a surgical patient. I didn’t really address this part with Dr. Holt though because he thought we were ridiculous when we tried to get her in with Dr. Kato.
I had to come up to Roanoke, because my follow-up ultrasound to see if I have ovarian cancer is Wednesday, January 23. If I rescheduled it, I’d have to have a new first one, and then wait another 6 weeks for the follow-up. I just… I can’t take that kind of chance. Barring any problems with the ultrasound, weather, or something else, I’ll head back to Abingdon sometime on Wednesday.
When I got to my parents’ house, before I even got out of the car, I called Mom to find out how it was going.
They never took her to ICU. They got her BP up some (not great numbers still, but better) with the blood transfusion and possibly by stopping the pain meds. And said that if they needed to try meds for BP, first they’d try dopamine* which they could do on the IMU floor.
The unit of blood helped her BP until around 11pm, and then her MAP began going below 60 again. So they started dopamine. There are 5 levels. She’s tried 1 & 2, which were no help. It is the higher doses which are used to raise BP, but they go up step-by-step to get a good fit, in case one of the lower levels does end up working.
She just started on level 3. Mom said they give it about 30 minutes to see if it will help. If they get all the way through level 5 without success, then they will transfer to ICU to start vasopressors.
Dr. Holt said the biggest risk they usually see with those drugs is damage to the kidneys. T was on vasopressors for 6 days on November and did not develop any kidney problems that time, so here’s hoping. (Or better, that the dopamine works and they don’t need to go to ICU at all.)
* Dopamine is a neurotransmitter, one of those chemicals that is responsible for transmitting signals in between the nerve cells (neurons) of the brain.
I think that’s everything I know for now. If I think of anything else, I’ll put it in a new post.
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