CALS Roll Call Continued

[Tomswife]

Thank you. The very expensive PWC is still in work. Fully paid by insurance. What should I do? Cancel? We have the ALSA loaner.

 

[Mary2]

I don't know myself. Do you think that he won't try the bi-pap? Have you heard any more about the PFT results.
I guess some of what I might decide would depend on the bi-pap issue.

 

[Tomswife]

His test results qualify him for bipap. We are talking to palliative care dr tomorrow to understand pros and cons of bipap at this point.

 

[Mary2]

I understand. That is a good conversation to have with a doctor. My heart will be thinking about you both tomorrow.

 

[MJT]

Kathy, I'm so sad to read this. I've never heard of anyone progressing this fast. You've never had one second to think. The unfairness of it makes me so mad. I hope you get fast, clear answers and find an incredible hospice. Damn. Sending love to you and your sweet husband.

 

[affected]

Oh Kathy bipap is about quality of life just as much as longevity. Don't underestimate that!

With the PWC, only you can make that decision. No one can tell you how long he has, and if he will use it much, especially if he does get on the bipap.

There are no really easy choices I know.
If the entire chair is paid for by insurance, maybe get it and know you can sell it to someone less fortunate for cheap afterwards, or donate it back to be a good quality loaner?

 

[Tomswife]

Tom and I met with the Summit Health Palliative care Doctor via telehealth. She does have ALS experience. She recommended Tom use a Bipap. So i notified the pulmonologist. And our discussion resulted in a decision to use Hospice services. Summit Health will recommend a Hospice provider.

 

[mirbo59]

Hi to all and thanks to those who responded to my post. I had to wait 2 days and 2 hours to post again.

Tomswife, my husband started bipap (NIPPY) a couple of weeks after diagnosis (resp onset MND) in 2016 and took to it right away. He got his first good night's sleep in a very long time and his energy levels improved shortly thereafter. Started by using it at night and has increased it to 24/7 over the past 2 or 3 years (it's all a blur). It has kept him going all these years but I suspect he has a slowly progressing form of MND. As others have mentioned there are a wide variety of masks out there and trial and error is the norm.

 

[lgelb]

Second the comment on the PWC. If you cancel the order in the middle of processing, unnecessary costs to the mfr/suppliers could be incurred. There will be someone who can use it, whether with ALS, progressive MS, SCI, etc.

And yes, I would at least have him try the BiPAP, which is not only more comfortable at the right settings than not having it but also allows for a more peaceful transition when the time comes.

 

[Tomswife]

Yes. We will not interrupt the PWC process.

 

[Doing My Best]

Tomswife, I'm glad the palliative care doctor recommended the bipap. Steve definitely feels better using it, so it's just a day-to-day quality of life enhancement. I think of you and Tom often and my heart goes out to you - you've been truly amazing in a devastating situation.

On a separate topic, can I just vent for a while? I had one of the most frustrating and infuriating days this week, and I still don't have the problem resolved, and it's stressing me out to the max.

Steve has started getting pressure ulcers around his tailbone. He's almost completely paralyzed at this point, a little leg movement but no arm or torso muscles, so he's very hard to turn in bed. I immediately called our ALS clinic and they gave me a stat referral to the Wound Care clinic associated with the hospital. The nearby one couldn't take us for two weeks, so I tried the other location 45 minutes away and they could see him in about a week. That was Wednesday.

To make a long story short, we went to the appointment but due to a combination of inadequate directions, no signage, and lack of handicapped spaces, plus no a ramp in a crucial spot, which required a lengthy detour, we arrived at 1:18 for a 1:00 appointment. I had gotten to the right address at 12:50 but then spent ½ hour finding the clinic including having to load Steve in and out of the wheelchair van twice. (I could write several paragraphs on the details, but it's not worth dragging you through it all - suffice to say it was Murphy's law at every turn.)

Upon our arrival, the receptionist looked at us and without even asking the patient's name, said "Sorry, we won't be able to see you today, you are more than 15 minutes late." It was easy for her to know who he was because we were the ONLY people there. I explained that we'd arrived 10 minutes early, and told her the long saga of trying to find their office, and asked if they could possibly fit him in because the problem is urgent and we'd been given a stat referral 9 days ago. She disappeared for a minute and came back to say "Sorry, we can't help you." Absolutely zero expression of regret, compassion, any effort to help out. I was flabbergasted, and furious, and so upset.

She said we could have a 9:00 am appointment Friday, so out of desperation I said fine, and left. But Steve seriously didn't want to have to get to a 9 am appointment 45 minutes away - actually more like 60 during rush hour - which would mean getting up at 6 or 6:30 to get ready. I called the ALS Clinic and told them about our experience, and they were horrified and appalled. They asked me to call the hospital's "We Listen" phone number that takes customer complaints and can actually swing some weight to handle things, and tell them the whole story. So I did that, and the person on the phone said they agreed the way we were treated was unacceptable, and would bring it up with management of the clinic and senior management of the hospital. They also said someone would reach out to me about next steps, and I said the main thing I want is an appointment ASAP with the nearby wound clinic. I then canceled the Friday morning appointment which Steve was basically refusing to go to anyway.

I haven't heard back, I've left a message for the nearby wound clinic location, the bedsores are progressing from Stage 1 to Stage 2, and I am just frustrated beyond belief. The ALS Clinic has given us an Rx for a hospital bed which I hope will arrive soon, and ALSA has given us a Roho cushion for the wheelchair, but I feel like it's imperative to have a professional look at these sores and make sure treatment is everything it needs to be.

We've had such uniformly good experiences with our care at UCSD, not only at the ALS clinic but at the Cancer Center where we went for Steve's colon cancer 8 years ago (yes he got his ALS diagnosis the same time he got his 5-year all-clear from cancer). I guess we've been spoiled, because I was just shocked at the lack of care from the person at the wound clinic. I know we will get things back on track but thank you for letting me just dump my stress for a while. Deep breath!

 

[Mary2]

Hope you are doing okay Tom's wife. I know the conversation with the doctor might have been difficult.

I have been told some hospices will allow a patient to stay on bi-pap but won't start bi-pap. So starting with the respiratory company the pulmonologist wants probably makes sense. So Tom will be on bi-pap when he starts hospice.

And maybe that is the quickest way to get Tom some relief and get him on bi-pap. But then the hospice might have you switch to their respiratory company.

At least that is what is happening to us. We are being told by 2 hospices we would need to switch respiratory companies when we join hospice.

 

[Mary2]

Doing My Best, I am sorry this happened to you at the clinic. The lady sounds like a bit of a jerk though she did go back and try to see if there was more that could be done for you. At least the hospital Admin is taking steps to correct the problem.

I hope they give you another appointment quickly.

Is your Pal's skin red or it sounds like there is an open area. I know that is scary. When you get the hospital bed you are probably going to need an air mattress, foam mattress or sometype of overlay to put on top of the hospital bed mattress. We have an air mattress and have had good luck with it. Others can tell you what they use.

My PAL's skin was red with a little open area...not too bad but it took months to heal and we tried Duoderm and various creams. We had a home health nurse come to the house for skin care for awhile. My Pal's skin did heal.
We did have to keep him off the area for it to heal.

 

[MJT]

DMB, pressure ulcers can develop in just 30 minutes. If you can rock him up and put a pillow under one hip, then later put one under the opposite hip, etc., that might help until the bed comes. Heels are another area to watch. I hope he heals quickly and that you can rest.

Tomswife, PALS stopped getting up in the middle of the night after starting BiPap. I'm not sure if there is a link or not. Also, google Trilogy recalls. One RT brought us a recalled unit and told us "to call him if we saw black dust in the tubing or mask." Um, no. Hope you are hanging in there. I've been thinking about you today.

 

[Tomswife]

Dmb.. you are doing more than your best. I do find that some administrative people in medical offices lack empathy. Perhaps they are desensitized from dealing with sick people everyday.
So sorry you had this stressful day.
I once gave myself 45 mins just to get Tom in the car. Nope. Not enough time.