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

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Sorry you are dealing with all of this
I too have a huge laundry list of chronic debilitating illnesses
I would like yo throw something out there…I have severe stenosis and arthritis in my spine ( neck down )
All my problems stem from that
Like you I have specialist but I did go Palliative Care
He will help oversee my care but he only medicates gor pain for cancer patients
I have another pain dr too
Go for consult if you can find one
Try Mayo or go South to Gainesville

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@windyshores

@philipsnowdon I wish I could rate that response 1,000%. Glad you still have meds.

My mother finally was able to get morphine (sublingual) when she went on hospice services. I am glad to hear your palliative care team sees the need.

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I am in total agreement with your assessment of the govt’s crackdown on the use of drugs & opioids by patients who really need them. I also don’t appreciate Big Pharma chiming in on a doctor’s assessment of what will work best for the patient. Then, Big Pharma turns around denying use of a prescribed medication when our physicians best know their patients & their needs.
I also believe that the cost of research done by Big Pharma is something that should be shared internationally & not causing the outrageous prices that Americans are charged due in large part to research.
I’m so sorry for your suffering for so many years.
Prayers, love & peace to you & your wife, Sir.🙏💕🌻

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