Hospice / feeding tube

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stumble

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Joined
Jun 8, 2014
Messages
57
Reason
PALS
Diagnosis
04/2014
Country
US
State
Minnestota
City
Woodbury
My doctor at the Faiview Hospital in Minneapolis suggested Hospice but said I should get my feeding tube first. That makes me wonder if I should get anything else first. My daughter is doing a wonderful job but she is looking forward hospice because she works and some referral of medical care to Hospice would be appreciated.

I am skeptical of the feeding tube because I would have to be hospitalized and that is where you get MERSA and my husband had one for years.

How many are on Hospice and do you recommend it or not
And how many have feeding tubes and did you get MERSA and would you recommend it?
 
Tim had his put in, even though he has no problem eating, as his pulmonary functions were very low. He has had many stays in the hospital since his diagnosis and has never contracted MRSA.
 
my pulmonary functions are at 45% of normal. So if I don't get it soon it no longer be an option
 
My PAL is getting his put in Friday. Very scared. Will let you know how it goes..
 
If you don't already have BiPAP, you will want to get it before hospice unless you don't plan to use it. And remember, plans change when breathing problems become reality.

I was hospitalized for the feeding tube, trach and vent, sent to a Special Care facility in order to have family and friends trained on trach and vent care, back to the hospital for gallbladder removal, and then had a mastectomy. None of these were short hospitalizations -- a month for the first even though I was not sick, they were just soaking Medicare for all they could get! The other stays were over a week just because they didn't know what else to with me, not believing that I could be managed at home. I have also had outpatient trach and feeding tube changes done many times over the years. No MRSA or other hospital acquired infections.
 
my pulmonary functions are at 45% of normal. So if I don't get it soon it no longer be an option

45% isn't that bad so as long as you are monitored frequently for further drops, you have time to wait. But an early feeding tube is always the best choice. If you are not half starved, your body will adapt to feedings more easily. If you have access to a hospital with a radiologist trained in doing PRG placement of a feeding tube rather than the more common, older PEG procedure, breathing is far less problematic during tube insertion so it can be done later in ALS progression. The PRG part is great at at any time, but "later" is a word that means you are a oxygen, nutrition deprived, scrawny beastie ripe for infection, refeeding syndrome, bowel obstruction, and all the other problems of ignoring advice!
 
Stumble:

In order to receive hospice care, a physician must certify that the patient is unlikely to live more than 6 months. After the first 3 months, the patient must be recertified by the hospice doctor/staff. Thereafter, short-period recertifications may take place.

The goal of hospice is "comfort care." That means symptom management, generally with drugs. Vital signs are checked weekly. Our particular hospice group provides an aide to bathe the patient twice a week. Our hospice supplies the drugs for symptom management. If a crisis occurs, our hospice group will provide a nurse to remain with the patient and family in the home for an unspecified period.

If a patient thrives instead of going downhill, there would be cause for a hospice agency (under Medicare guidelines) eventually to remove the patient from hospice care. Alternatively, a patient may opt out of hospice at any time in order to receive medical care unrelated to the terminal diagnosis.

Day to day care must be provided by the patient's family caregiver(s) or a healthcare agency. Costs associated with that care are out of pocket costs and are not covered by hospice.

It is useful to understand what hospice does or does not do.

Best wishes,
vl
 
Stumble, had my peg placed in January, an overnight stay and then home. No problems, no mersa, no regrets. Life is simpler, no worries about chocking on food or meds. A plus, when the doc prescribes a vile tasting med, it goes in the tube and I never taste a thing
 
An unqualified recommendation for the feeding tube here! I had mine put in two years ago, when my lung function was similar to your own. I agree with Dalvin, but add that no one has to feed me (easier on CALS), i can do other things when i eat, and you can just put the gravity bag on the floor if you need to vomit (Sometimes required if the drip is too quick ). Hospitalized close to 30 times, 0 infection, feeding tube is my shortest stay. Good luck.
 
@ vicare,

I also thought that hospice is only for those expected to die within 6 months but I have been blessed by meeting woman whose husband had ALS and was on hospice for 16 months. She said they will place ALS patients in hospice but make sure to get all therapeutic care done as we won't get it once on hospice care. I am sure it is case by case. I can only speak of this one person I know. It is something I will do so my wife will get some relief form caregiving.

Doug
 
I am a huge advocate for getting the feeding tube, however it is placed EARLY.

My husband said early on that he would take the tube, but that he would know when it was time. He made many poor decisions as he also had FTD, but he needed the control and I allowed him to make his decisions.

By the time he 'suddenly needed' the peg, he was half starved and dehydrated.

He never took well to feeds, and he therefore refused to take enough feeds to even stop losing weight until he finally at 51kg told the hospital that he was losing weight because I wouldn't feed him enough ... sorry I digress.

The real point is - if you take the feeding tube whilst you are as strong and healthy as possible and still have good body weight, you are not only less likely to get infections (MRSA typically only gets hold of compromised bodies, that's why all the nurses never show infection from it even as they carry it around an infected ward), and you are more likely to tolerate feeding as your digestive system is still strong.

You don't even need to start taking nutrition through it straight away, you can have it there 'ready'.

OK my 2 cents
 
>I am a huge advocate for getting the feeding tube, however it is placed EARLY

:-(
 
I didn't quite write that sentence the way I intended, wot shockin english twas too!

I am a huge advocate for getting the feeding tube, however it is placed EARLY

It should read:

I am a huge advocate for getting the feeding tube placed EARLY if it is going to be placed at all.

Then the rest of the post should explain why I say get it early.

Now Max don't pout, it's not becoming dear ;)
 
I had a long discussion about this with my husband a few nights ago. We both agree that since my FVC was down to 71% last clinic visit, that it is time to start on that road. Mainly because I am still pretty active, but appetite is a big issue.
 
45% isn't that bad so as long as you are monitored frequently for further drops, you have time to wait. But an early feeding tube is always the best choice. If you are not half starved, your body will adapt to feedings more easily. If you have access to a hospital with a radiologist trained in doing PRG placement of a feeding tube rather than the more common, older PEG procedure, breathing is far less problematic during tube insertion so it can be done later in ALS progression. The PRG part is great at at any time, but "later" is a word that means you are a oxygen, nutrition deprived, scrawny beastie ripe for infection, refeeding syndrome, bowel obstruction, and all the other problems of ignoring advice!

I can testify that my mom was all of those and has recovered nicely from her PEG placement. She has gained 20 pounds since placement.
 
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