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

@trishanna

@merpreb Appreciate your comments. Should have mentioned my husband has Alzheimer's. While I have lists which tell me which foods do what, putting it all together in a meal I can prepare is my problem. Guess I need a menu dietician!

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@trishanna, How utterly frustrating all of this must be for you! Can tell you that with pre-diabetes and kidney dsease diagnosed very close together, I was spending hours of printing out foods good for one but not the other. Getting to a good dietition who provided a meal planned for both diabetes and kidney saved me a world of time and effort. Sending you best wishes with the hope that you can make your voice and needs of yourself for your husband heard successfully!

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@fiesty76

@trishanna, How utterly frustrating all of this must be for you! Can tell you that with pre-diabetes and kidney dsease diagnosed very close together, I was spending hours of printing out foods good for one but not the other. Getting to a good dietition who provided a meal planned for both diabetes and kidney saved me a world of time and effort. Sending you best wishes with the hope that you can make your voice and needs of yourself for your husband heard successfully!

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@fiesty76I loved that you jumped in here fiesty! Perhaps you can share how the dietitian made it easier for you! I know how hard this can be. I've had vegans, salt-free, fat-free, and meat-eaters all at once. It can drive you nuts!

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@merpreb, The dietitian provided me with charts and lists of foods groups, along with individ. content values, that could be used for both diabetes and ckd meal prep. Also some samples of breakfasts, lunches and dinners with values of the ingredients. Because I am also seriously under weight, he added some foods that I could add to diet for additional calories.

The guidelines and specifics and how they would apply particularly to me and my lab values proved invaluable. Some were published by nat'l dietetic org/foundation/institute? and then he wrote out some specifics for me based on some individual tweaking. like how much protein,carb, etc were needed / meal because I am also underweight. Cannot emphasize enough the stress reduction his help provided. I've pretty much memorized which foods work and those make up my grocery lists.

I may have been exceptionally lucky to have had his particular help but am so grateful for the time and effort he spent with me because subsequent lab results for both conditions have shown continued improvement in lab scores. When I called for a ff-up appt. with him was told that he had moved away so haven't yet met his replacement.

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