February 28, 2014 at 3:11 pm #78930okansasParticipant
I’m so sorry.
I posted to another thread my experience with my husband’s ascites (bloated stomach from fluid buildup caused by the tumor) and thought I’d share it here too.
His doctors ordered the fluid drained, but took too much at once, upsetting the balance of chemicals/electrolytes in his body and he wound up with acute renal failure where he’d never had kidney problems before.
Because of that, he was not able to take the same regimen of chemo, because one of the meds (can’t remember which one of the gem/cis cocktail) stresses the kidneys and that would have exacerbated his kidney problem. The doctors from then on had to work hard to avoid kidney failure, including a trip to the ER brought on by vomiting and weakness.
From then on, the acute renal failure severely limited what my husband could eat, and he was already able to eat only limited items. It became a huge issue for us, trying to decide whether to drain or if he should put up with the discomfort.
Glad you have hospice in place to help you.
MargaretFebruary 23, 2014 at 5:04 pm #78929willowParticipant
I saw your post about your husband having “rally days”. That was so kind of you to share your experience with another going through similar circumstances. You’ve bedn married so long and Frank is only 63. Breaks my heart that this has happened in a mere 3 months. I respect Frsnks decision to not get tx, but did they address the fluid buildup so he can breathe easier? I am keeping you and Frank in my thoughts.
WillowFebruary 9, 2014 at 3:48 pm #78928kvollandParticipant
Unfortunately that can be the case with some insurance plans, especially privately paid insurance plans. It would be nice if all insurance plans were equal for this and realize that when you are discussing hospice, the last thing you want to deal with is money and it most cases can deal with.
Look at your hospice closely, if they are not for profit (the Home Health and Hospice I work for is) then they will often write off the financial piece of it. Also look and see if you have a second hospice available in your area. Quite often areas have one that is larger and more well known while there is a second smaller agency. The second agency may be non-profit or be willing to work with you on the finances.
Lastly appeal to your insurance company. They have the ultimate decision and I know that some will drop the co-pays and deductibles, especially in a situation like this.
I have a firm belief that NO ONE should have to pay anything for hospice care. You are already dealing with the most stressful time in your life and there is no need to have to worry about finances.
We had a similar story at work just recently only this young woman’s plan only allowed her to have 15 days of hospice care in her lifetime. She was very ill but we knew she would be here longer than 15 days. We took her on and will write off anything her insurance does not pay.
Hope you can work things out.
KrisVFebruary 9, 2014 at 3:15 pm #78927lainyParticipant
Yikes! When my Teddy had home Hospice we paid nothing but he was on Medicare. Then his last 4 days I had moved him to a Hospice facility and Medicare covered that as well. Sorry wish I could help you. I am sure you will get some suggestions here. I do have to say that the way you are advocating for yourself and your whole attitude is amazing and you are a heroine to me!February 9, 2014 at 7:07 am #78926ladylindenParticipant
I was evaluated for Hospice care and because I have a $2,500 deductible and a $3,500.00 co-pay, they told me I would be responsible for meeting the deductible and co-pay first, or I would have to pay Hospice directly. I am not on Medicare, but have paid $546.00 per month for years. I suppose Hospice doesn’t want to get “stuck” with a bill when I die. Anyone been in the same situation? Thank you.January 25, 2014 at 6:15 pm #78925willowParticipant
I would add that you don’t have to wait till the next scheduled visit. Call and they’ll send someone out to eval and then get the order from dr by phone for drainage of necessary.January 25, 2014 at 5:45 am #78924kvollandParticipant
I am glad things went well for you with the hospice evaluation. You will find them to be a great support and a great resource.
It may be that your husband had some ascites in his abdomen which is buildup of fluid when the liver is not working well. If it causes shortness of breath and discomfort, they can drain it. This should be covered by hospice when it’s done since it is a comfort measure for him. You may ask about that. The hospice group I work with do it quite often in situations like this. Also as Marion said, talk to your doc about ways to prevent the fluid buildup.
KrisVJanuary 25, 2014 at 5:08 am #78923marionsModerator
You may also want to reach out to the physician re: possible diuretics or drainage of fluid. It won’t hurt to ask and could possibly make Frank feel better.
Hugs and love,
MarionJanuary 25, 2014 at 4:54 am #78922horses3671Member
The hospice nurse and social worker visited today. Frank slept most of the day, but did thank them for coming. The nurse will return on Tuesday. He is complaining about shortness of breath, so they may order oxygen. His abdomen is very large considering he is not eating that much. I fear that is why he is short of breath. Could be fluid in the abdomen. Thank you for all the kind words and hugs. This is a very scary place to be and I am glad I found all of you.January 23, 2014 at 4:15 pm #78921darlaParticipant
Glad to hear you have gotten some help and that you and Frank are both comfortable with the decisions you are making. His comfort and keeping him pain free is what’s most important right now. Wishing you the best along this journey that none of us ever wanted to or thought we would be taking.
Love & Hugs,
DarlaJanuary 23, 2014 at 2:25 pm #78920lainyParticipant
I am so glad you had your evaluation with Hospice and know you have done the right thing. I hope for Frank a comfortable Journey. If you have any questions just ask away and we will try to help. Sending you both many hugs and lots of love!January 23, 2014 at 8:30 am #78919marionsModerator
horses… I am sure that things work out because you have made a choice best for your circumstances and the fact that your husband feels pretty good should bring you much comfort. I wish with all my heart for things to move forward in a peaceful and pain free way.
My heart is with you,
MarionJanuary 23, 2014 at 5:20 am #9439horses3671Member
My husband, Frank, was evaluated for hospice care today. He was diagnosed in November 2013. The hospice worker thought that this would be the best option for him since he is refusing any treatment (we were told the outcome would be the same) and he has many other health issues. The goal is now to keep him comfortable so he doesn’t have to leave the house. Besides the tiredness and sleeping most of the day, he seems pretty good. I was surprised at how many things are available for comfort. Sure hope this works out.
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