Feeding Tube Resistance

[azgirl]

OK, I know this has been a risky, and possibly stupid decision, but I just am having the hardest time agreeing to the feeding tube. My doctor has been after me for over a year to have it done, but even though I understand the risks I keep resisting.

I can still eat normally with only occasional choking
My weight is up, and fact I've never been this fat,fat fat, up 20 lbs or so since my athletic days.

I can still get in pool by strapping gait belt tightly around waist and being transferred onto pool lift, really don't think this would be possible with feeding tube in place.

Really really don't want to give up pool time, which is my main reason for putting it off. But with lung capacity declining I realize the window for safety is closing.

Advice or lectures from you wise friends?

 

[codyclan]

My husband resisted for a really long time, for a number of reasons, one of which was a desire to participate in a specific clinical trial. Then the situation was critical, his weight was way down and he had a significant choking episode that resulted in a hospital stay. By that time, his FVC was down to 27%, which made the procedure more difficult, but they were still able to do it through intervential radiology and he was on the bi-pap through most of the procedure.

I know that most here will say sooner rather than later and, of course, my PALS doesn't regret getting it. In retrospect he thinks it would have been more helpful to have had it earlier, but that is only with hindsight and he can't focus on any regrets with this disease--in the words of our beloved Max, it is what it is.

You have to do what you feel comfortable with, when you feel comfortable. These are your choices and you do not need to feel guilty about making them. There is no gps here--turn right and get a feeding tube at point A, go ten feet and get a bi-pap...... I wish there were. That said, I would suggest you talk to the doc about continuing your water workout after the procedure--it is less limiting than he thought. One of the things that has stuck with me, however, is a comment my husband made when he was first having difficulty shaving. I offered to do it for him and he said that as soon as he lets me do it, it is one more thing that he will never be able to do again. Therefore, I understand your resistance but encourage you to look at it from an alternate perspective, get as much info as possible and reserve the right to be flexible and change your mind.

All the best,
Tracy

 

[GregK]

Once it heals you can go into the pool.

 

[ckck]

Everyone makes their own choice with regards to feeding tubes. I waited until I could wait no longer, lost about 60 pounds. I thought I could force myself to eat enough by mouth to stop the weight loss. Wrong, I cannot out engineer ALS. Anyway I was getting more fatigued. Got the tube and it was so simple I dope slapped myself over and over for not getting it done earlier when I had some weight left on me. Hope you get the information you need to make your decision.

Ken

 

[Manhattanite]

As stated above, this is a very personal choice, but my partner, who has bulbar onset, would not be here today if he had not elected to have the PEG put in a year ago.

He fully stopped eating and drinking by mouth two months ago.

We just came back from a 7-day cruise that he enjoyed very much, so I do think that the PEG added to his quality of life and has allowed him to profit from the time he has left...

 

[notBrad]

I got mine proactively and it was a smart move. It let us get use to it without the pressures of it being my only source Of nutrition. It also let me extend the time I could pleasure eat. We would have part of a meal and once I started to get tired we would throw the rest in the blender.

 

[affected]

I can still get in pool by strapping gait belt tightly around waist and being transferred onto pool lift, really don't think this would be possible with feeding tube in place.

Really really don't want to give up pool time, which is my main reason for putting it off.

I'm not sure if all responders are understanding your actual concern Kay but I know we have talked about this before - the tightly strapping the gait belt where the peg will be.

I know the only thing that keeps coming to my mind is how else can you get into the pool lift besides the gait belt. Maybe this is where all the thought energy needs to be channeled? It sounds like you need to be able to do a standing transfer to get into the pool lift? Is there any way you can look on craigslist or similar and find a second hand hoist, doesn't have to be electric, that the pool would allow you to donate to them and keep there to transfer you from chair to pool lift?

 

[chally]

I totally feel ya azgirl! I am in the same boat!
I am also on hospic and they said I would have to get off for the procedure as it's considered life prolonging and their not into that. So yeah I also have a big decision coming.
ALS sucks! Love ya. Chally

 

[soonerwife]

My PALS was very resistant to give in to getting the tube. He only agreed once he starting losing weight. His PFTs had declined into the 20s when he had it put in.

I believe he wouldn't be here any longer had he not done it when he did.He now take 100% of his medication and nutrition through the tube.

The one thing that he misses is a lay down massage. He can't lay on his stomach to get one and that has been missed so your concern is definitely valid.

Hopefully you can find another way to get in the pool.

 

[KimT]

Talk to the clinic/doctor about your concern. Ask them for their opinion on how you are now going into the pool. I do think there should be an alternative for getting in the water.

 

[4tloml]

Wondering if a foam pad with a cut-out for mic-key like my PALS uses with the percussion vest would work under the gait belt. It's square, around 1/2 thick dense foam and we cut the center out so it sits around the mic-key. (He was advised not to use the vest, though, for 6 weeks after placement.)

Sooner, my husband still got his weekly massage and range of motion stretches by arranging pillows above and below the mic-key. His therapist worked with him till they found a comfortable situation. Now he has to lay on his side because he can't get on/off the table and can't lay on his stomach on the bed with his bipap mask. But he's decided side massage is better than none. Hope your PALS's therapist will find a solution for him.

 

[affected]

Let's not stop til we get a solution so Kay can just relax and get that peg in during the winter so she is ready for the pool come summer!

Loving the ideas are starting with thick foam and cutout!

 

[soonerwife]

Thanks 4tloml! He doesn't have the mic-key. He still has the dangler. He decided he doesn't want the mic-key. He now gets chair massages.

 

[azgirl]

Thanks for all the responses! This forum is the best resource available!

Don't think a manual lift Will fit between the pool chair and the pool. Had not thought of a phone cut out around the tube exit, that may actually work.

Called the surgeon yesterday and made an appointment, so at least I've taken the first step.

 

[KimT]

I think padding the area might work and I don't want you to give up your pool until it's absolutely necessary.