Assembly Line

 

Sitting making new hymnals for Mom's branch - I'm making labels, Mom's prepping the folders, Roger's punching holes, Sherri and Don are doing assembly/quality control... I just love the feel of a group project during the assembly stage, where all the decisions have been made and it's just "get behind the car and push" time. Quilting, canning, even just cooking together - it just feels so productive. Happy memories...

 

Coincidentally, Cat was doing Christmas cards over in her corner of the world. It was lovely - texting back and forth, felt like we connected through projects. 

Frustrating phone call

 

TL/DR - frustrations with medical, but hospice is moving forward

One of the most frustrating phone calls of my life. Let me start out a month ago. I had my annual recertification/checkup call w/Dr W.

At that time, I mentioned that my body has been wearing down, and I was thinking of switching to hospice. I believe Ricky (my liver) has started the final countdown, and I honestly think that I would not survive a trip to SLC (where the nearest hepatologist is). A couple of weeks later, after some pretty vile dry-heaving, I decided it was time. I wanted to go ahead and transfer over to hospice care. I called my Drs office to set up an appointment (which was a week and a half out), but I also sent a message saying "If you can send a referral to my HHC/hospice provider just from me letting you know, great, otherwise I'll see you in a week and a half." I believe my home health care nurse also sent a message saying "hey, Deci's wanting to switch".

I believe that my doctor (or possibly just his nurse, T) took that as me trying an end-run on insurance/medicare. There was a bunch of back and forth, ending up with me sitting on this phone call. I also sent him a letter outlining my reasoning, so that I'd be prepared, as I've been having difficulty with getting my words out clearly. I also got H (the nurse over the Hospice program I want to switch over to) to sit with me so that we both heard the same words at the same time and she could help me explain myself.

I think I was right about offending my doctor, because he came in flashing his "hospice director for 8 years before I came out here" credentials, started out telling me that he didn't think I was a candidate for hospice because he doesn't think I'm going to die in 6 months.

We went over my various diagnoses - Hank, Ricky, COPD, Diabetes, hernia, etc... My being unable to walk 3 minutes. We talked about me not being able to leave the house without severe panic attack, and that it took me two days to recover from a trip to Roosevelt - seeing any specialist is out of the question. Yep. He agreed with me. But can I point to where it says less than 6 months? He thought that a hospice level of care was probably exactly what I needed at this point. He just wasn't willing to put his name on it. Because he doesn't think I'm going to die in 6 months.

I asked him what else he would recommend, if not hospice? Well, he offered up going into the senior living/care center attached to the medical complex, because that way they could wheel me over for my appointments. My appointments that accomplish nothing. After 30 minutes of what felt like justifying my pain, he finally came out and admitted that he was not going to send a referral, but that I could call Dr. M, and he could admit me - he even sent a note to Dr M warning him I was coming.

Damn it, we need a middle level between GP and Hospice - maybe call it stability? (Roger has helpfully pointed out that stable and I really don't belong in the same zip code.) But basically... acknowledgement that I am not going to get any healthier. There is no chance that I'm going to suddenly see the light and walk, so there is no reason to keep driving 3 hours each way to the tabernacle.

This isn't me giving up.

Why Hospice?

Dear Dr Wells

 Apparently, when Harley was talking with Tiffany this morning, Tiffany said you didn't remember talking with me about hospice. I've made an appointment with you for week after next, but I'd like to try to get my thoughts out on paper, if that's ok.

I feel like I'm moving a step down in my progression on my diseases (and on my body just being worn out.) At this point, realistically - 

-    My cancer is dormant, mostly. It's not growing... hasn't grown in years, and that's terrific, but it's also affecting me every day.

-     Catheter issues. It would be good, since I'm reliant on the catheter, to have it checked more often than is usually done on home health.

-     Liver issues - I'm having days (three, so far, but it seems to be trending) where I dry heave for six to eight hours straight. Nothing comes up other than very bubbly mucous (lots of it). I've been feeling more and more generalized pain, especially cramps in the abdomen, and bad excess flatulence, all of which I suspect mean I'm going from the compensated stage of cirrhosis to uncompensated. While trying to set up an appointment with a hepetologist in the city, I realized that there was no way I was going to be able to drive over to the city - I'm having serious issues just getting into the car, let alone driving 300 miles just to be told to change my diet. I've changed my diet. I've tried PT. My body is worn out. I'm worn out. I don't have it in me to fight much longer - at this point, I would like to switch over to comfort care, rather than trying to fix me. 

-    I am, at this point, experiencing severe agoraphobia, so leaving the house leads to panic attacks just getting into the van, which I can not do by myself, and which can take 5 minutes or so even with a couple of people trying to get me in there. I don't know how I'm going to get to Dr Potters on Monday - he is requiring an in person visit, and I honestly don't know that I can do it. I am at the point in my life where I don't want to work on my issues, or try to get better. I just want to be able to be comfortable and slip away as safely as possible. While I really enjoy seeing you and talking with you, I think that I need a different approach - I think I need to step up to quantity care, if that makes sense. I don't want to have to wait a week to talk to you about a UTI that I have or that I'm dry-heaving (again). I need help keeping my skin clean and rash free, which for me requires a shower every couple of days, and I'm at the point where I need help with showering. I need help organizing medication. 

Anyway - I just wanted to try to explain myself in an organized clear fashion.