clinic visit

[Blackpool]

Hi everyone, I had a clinic visit yesterdayand came home discouragaged and with a decision to make. I was diagnosed a month ago,my breathing laying down was between 35% and 40%, sitting up 72%, I since have a bipap and my results yesterday was sitting up58% a big drop, it seems to be going downhill fast, I am hoping to see Niagra falls at the end of Sept and my grandaughters 8th birthday is the middle of Oct.she lives with us
I have to decide if I want a peg, is it worth the bother and risk if my breathing is going so fast?,I am just having a hard time today being positve.

 

[GlenBrittle]

Hey BP,

Go for it , even if you do not need it now.

Think about it. You can heal while you are able to , or you can TRY to heal while you are trying to breathe.

Mine gets inserted Sept 17. No , I dont need it yet.

 

[kelly]

Definitely go for the PEG. It has been the best decision my hubby has made since this brutal diagnosis. His breathing is at 48% upright and lying down..but still has much living to do! The tube is a piece of cake...I do it all for him. Has taken so much stress out of eating for him. You must go to Niagra Falls. We brought are kids when Andrew was first diagnosed..they will never forget seeing them with him. Good luck....dont give up hope!

 

[Al]

Hi Blackpool. Your breathing test results could have been lower because of tiredness, stress, poor seal, different machine etc. Mine's at 10% laying down and 44% sitting up. I've been diagnosed quite a while though. If they suggest a peg I'd take it. Are you having any choking, swallowing issues? Any weight loss? Niagara Falls is a must see. I'm only a couple hours away. I wanted to see the Grand Canyon. Went in 2005. Really deep ditch but worth it. Live one day at a time.

AL.

 

[indigosd]

My Husband was diagnosed in July and we are DEFINATELY getting a peg as soon as possible! Our ALS Neurologist "doesn't believe" that it prolongs life-HA, I would like her to say that if she couldn't eat! Web was very distressed to find out that he had gained 6 pounds since July and I was doing the HAPPY DANCE! I have been really slipping him fat calories galore [grinning] Everything that I have read says to do the peg before you need it and that makes sense-less stress and better healing. Go for it!

 

[pamnandy]

My vote is, go for the peg! Don't worry about those stupid numbers. Make that bipap portable and take it with you. That's what we did. It's amazing how much living you can still do even if the numbers are small. When you get to Niagra Falls, take a picture and post it on here for all of us to see Then take another picture of you and your grand"baby" at her 9th birthday!

 

[Zaphoon]

I vote for getting the PEG as well; the sooner the better. I have to say it saddens me to hear you are progressing at the current rate but these things have been known to slow down, as well.

Here's hoping you slow to a snail's pace, Blackpool!

I'm pulling for you!

Zaphoon

 

[BethU]

Blackpool ... Having a PEG will make all the difference in your quality of life. I can't tell you what it is like when you are unable to swallow, but it becomes a full-time job fighting to get nutrition into your body. We don't need to go through that when there is a simple, mechanical solution that allows us to get all the nutrition and hydration we need effortlessly.

We need all the strength we can get to fight ALS. This is one battle with ALS you can easily win, and put the issue of swallowing behind you for good. Having a PEG will let you ENJOY your trip to Niagara Falls and your granddaughter's birthday party ... and Christmas and New Year's, etc." Nutrition = strength and well-being.

 

[Blackpool]

Thank you all so much for your replys, I will let them know to put me on the list for the peg.I don't have any problems swallowing or choking now but who knows in the future.You have all renewed my hope and I appriecate the encouragement ,it is nice to have people understanding what is going through your mind. God Bless you all in your struggles. I might need some directions on how to post photos at a later date.

 

[Katie C]

Indigo... glad I'm not the only one slipping in fat without telling! All those fatty foods I can't eat? Ha! Mr Healthy Eating is getting them now.