squeamish? feeding tube? yikes

[Reef]

Hi All
It's been so long since I's posted here. My husband is coming upon his 2 year "diagnosis" anniversary and we are just now going into a wheelchair and his exhaustion is starting to really affect daily life. He is no longer working and life is getting slower. He has been having more "choking" episodes and mentioned that maybe its time for a feeding tube.
Food has always been such a source of joy for us. Every night at the dinner table with our kids and family/friends food has played such an important role. I know he won't need the tube full time yet but I am a bit squeamish about all of this... It's not my strong point and I don't want to show, that the thought of a feeding tube makes me want to faint!
What do I need to know? Is there a website I should look at?
Appreciate you all as always
xo

 

[Cricket]

Hello Reef... I found a video off the ALS Association under Resources then go to videos. Watched it last night and found it helpful. Got to see what it all looks like and hear testimonials. I figure the more I talk about this and see, the more comfortable I will become (i hope). Never got any cool piercing because i am squeamish. Now i wish i did. Good luck

 

[Nighthawk]

Feeding tubes (also known as PEG) become necessary when a PALS can no longer eat by mouth because of fear of chocking or even worse: aspiration (which means food going down the wrong pipe) which can cause pneumonia which in turn can lead to ER (Emergency Room) hospitalization and further complications which could lead to premature death.

Although, to qualify for the procedure of getting a PEG tube, your PALS "FVC" must be higher than 50% or the gastroenterologist would refuse to perform the procedure to the PALS because of the fear of complications that could arise from the anesthesia if FVC is below 50%.

I know some people don't like the idea of getting the PEG tube but, it's either that or die of starvation by not being able to eat anything.

I haven't yet had the procedure myself because I still can eat relatively well by mouth and have been able to keep my weight relatively stable, but when the time comes, I will have to make a choice.

NH

 

[Reef]

Thank you for the feedback. Sometimes it all gets so overwhelming. I know that my body is not the one with the disease but I feel like the disease has got it's hold on all of us and some days it just hurts so much it's hard to breathe.

 

[sadiemae]

The feeding tube will be your best friend. It will take the worry away of wondering if your husband is getting enough calories and fluids. My husband takes about a thousand calories a day from formula, and another thousand calories from food he enjoys eating. Lack of enough fluids can cause so many problems; constipation, kidney stones, and Urinary tract infections to name a few. So, even if you just use it for hydration, it will make a big difference in how your husband feels.

 

[lgelb]

It is increasingly evident that the "window" for gastrostomy need not close at an FVC of 50% based on the studies (I have linked to one abstract but there are more) available. Some patients, such as my husband, do not have the luxury of "pre-need" surgery due to other health conditions. It remains to be seen if he has enough life left at the point at which he needs a tube to know whether he wants one. His FVC is 40/38. If he opts for the tube, he will likely get a PRG on BiPAP.

People make this decision using a variety of criteria and so the "get it now!" rhetoric seems overly generalized. Every procedure carries a price that is different for some. ALS entails a number of decisions that people will sequence differently, by choice or chance. And, of course, many are linked. Let us all support optimal decisions for each of us.

 

[marypat]

reef there is a thread under pals started by cricket that has good info.

 

[momap53]

Rose has some photos on her profile page. She's been very helpful with links and sharing how she successfully dealt witH granulation issues.

 

[AnaMaria]

"some days it just hurts so much it's hard to breathe"
I understand. I just came back from an ALS support group. I met some very brave people. There were those who lost loved ones there too. Mom doesn't want feeding tubes in the near future but she and dad are not ready and willing to view the options. They are scared.

I wish her not to starve. Who wants that? Then its her decision I think... so hard.