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Does anyone have experience with Palliative Care?

Posted by ashby1947 @ashby1947, Dec 11, 2020

Hello Everybody - If you have had experience with Palliative Care, I would truly appreciate hearing about it. What were your medical issues? What did your Care Team do? Did it work for you? I'm a 73 y.o. woman with multiply medical problems, most of which are severe: uncontrolled BP (on many medications which create their own problems); dizziness and lightheadedness; Hx of atrial fibrillation and supraventicular tachyicardia; stomach pain daily 8 or 9 on scale (this is recent and I'm not sure tx for heart burn is correct) and all the accompanying issues of no appetite, weight loss, constant nausea; diplopia which affects balance and self-confidence; lumbar stenosis; dry eye syndrome; and other. Sorry, don't mean to be tedious. The reason I mention all these is that dealing with all of them, every day, is making me exhausted and depleted physically, mentally, emotionally, and spiritually. My husband is great; however, this obviously affects him. I am barely able to accomplish activities of daily living, and recently I have asked him to drive me because I don't feel confident on my own.

I know that hospice care is for those with 6 mos or fewer to live. What I've read about Palliative Care mostly talks about care for people with one significant issue - cancer, heart disease, kidney failure. I wonder if I would even qualify since I have multiply problems. I have very good physicians and medical care here in Jacksonville. But they are each specialists. You know how it goes - no one is dealing with how they all interact and the compound effect on me. I have a long session scheduled with my PCP in a few days. He seems to deal only with the presenting problem.

Any thoughts or experiences you have had would be welcome! Hope this is a good day, Sue

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rashida | @rashida | Jul 28 11:39am
In reply to @celia16 "I’ve read that a lot. Our experience in the ED that day was bizarre, imo. My..." + (show)
@celia16

I’ve read that a lot. Our experience in the ED that day was bizarre, imo. My dad got his Explanation of Benefits from his health insurance company and the charges JUST for his labs was over $23,000.00. Seriously. Insurance paid over $19,000.00. Daddy’s part is slightly over $200.00. No telling what the entire bill will be.

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@celia16 fortunately we don’t have to pay for anything upfront (perhaps this is why it is considered “free” …?) - provided it is covered by our government health plan (for which we pay annual premiums through our taxes at income tax preparation time, which is why I say our healthcare is not free!), but all treatment is regulated by the government health plan.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 28 12:43pm
In reply to @philipsnowdon "Hello, I’ve been severely disabled the past 33 years from a combination of CFS, CHRONIC FATIGUE..." + (show)
@philipsnowdon

Hello, I’ve been severely disabled the past 33 years from a combination of CFS, CHRONIC FATIGUE SYNDROME, FIBROMYALGIA, CM, CHIARI MALFORMATION. Diagnosed and treated for prostate Cancer 18 months ago. I started seeing a Palliative care physician about 6 months ago. He assists me with managing my overall quality of life with all of my health challenges. I find him very helpful
and recommend that you seek one out for your situation.
He can also prescribe me meds if one of my other specialists can not, especially pain meds! Palliative care specialists can provide a very important role in your health are and over all well-being.
Best wishes,
Phil

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Hi Phil, I'm so glad you found good care for all of your aliments. Can you explain to @celia16 how you got connected with the Palliative Care Physician?
I know that in our clinic, we can ask for a referral through our primary provider or any specialist, but I'm unsure how it works if you are not part of a large multi-specialty practice.

Good luck with your continued support.
Sue

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dizzyprizzy | @dizzyprizzy | Jul 29 8:32am

Palliative care is a step you may need but first try a reset. My brother did this Had cancer, diabetes caused by meds for AFIB and angio edema and dizzy to point of exhaustion. Get weaned off all your medications under the care of one doctor so you can sort out the side effects from the disease. Then add back essential ones. Brother went from Coumadin statins, betablockers, constant infections, insulin on a monitor, and antibiotics of ever increasing amounts that only made him sicker and he ended up with partial foot removal. He found out he was allergic to antibiotics, his insulin was not working for him, etc. etc. Now after hyperbaric chamber treatments his foot is healed, he is off, beta blockers, statins, all blood thinners except 1 baby asprin a day and blood sugar is controlled with new insulin usage working. He is back home, waking with a prosthetic shoe with a walker inside and outside to his truck he can now drive again. His BP is high but his diet is helping bring that down. His cholesterol is high but he wants to have a life. He is 72 and was on the medicine merry-go-round for 10 years. Get pallative care if you can but it can't hurt to do a med reset.

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1 reply
Mentor
Miriam, Volunteer Mentor | @mir123 | Jul 29 9:27am
In reply to @dizzyprizzy "Palliative care is a step you may need but first try a reset. My brother did..." + (show)
@dizzyprizzy

Palliative care is a step you may need but first try a reset. My brother did this Had cancer, diabetes caused by meds for AFIB and angio edema and dizzy to point of exhaustion. Get weaned off all your medications under the care of one doctor so you can sort out the side effects from the disease. Then add back essential ones. Brother went from Coumadin statins, betablockers, constant infections, insulin on a monitor, and antibiotics of ever increasing amounts that only made him sicker and he ended up with partial foot removal. He found out he was allergic to antibiotics, his insulin was not working for him, etc. etc. Now after hyperbaric chamber treatments his foot is healed, he is off, beta blockers, statins, all blood thinners except 1 baby asprin a day and blood sugar is controlled with new insulin usage working. He is back home, waking with a prosthetic shoe with a walker inside and outside to his truck he can now drive again. His BP is high but his diet is helping bring that down. His cholesterol is high but he wants to have a life. He is 72 and was on the medicine merry-go-round for 10 years. Get pallative care if you can but it can't hurt to do a med reset.

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That is an excellent suggest--to review all meds. This is one of the central things Palliative Care can do, at least in my home state. Palliative Care isn't Hospice. Palliative Care is an add-on--the patient is still getting traditional medical care within the system. Hospice will review drugs but often just keep the ones needed for short term comfort (again, this will vary). But for drug overview, Palliative Care can be specialists.

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