Peg questions and fear

Hi Forum Family! I have missed being here for a while, but just have a lot going on still with my daughter and my father. Here is my question for all your PEG meisters. My dad came back from his appt with his ALS specialist yesterday and found out that his FVC went from 95% to 64% just from the last visit! Also, he has lost 20lbs in the last year and his doc wants him to get a PEG ASAP. He is eating good still. The only thing he has problems with eating is lettuce. Now, I am all for getting a PEG, but I have watched Linda go through getting a PEG and not be able to bounce back like she thought she would, then Jay (rattman) got his done around Memorial Day weekend, and he still is not doing well. Kay Marie's husband got his and he to was never the same after. My dads doc said it would give him more energy and that is the only reason my dad wants to get it. I know that JeffP did really good when he got his and sadaemay's husband Les did well too, but they are younger. My dad is 70. So, the question is, if you got a PEG how was your recovery? Did you recover to the point of feeling better than before the PEG? Is it best to get it now because he will recover better than when his FVC is lower? Or is it better to still have "quality of life" for as long as possible before getting the PEG? Also, the doc said it will only be a day surgery and he will only have sedation so he wont remember it, and then a local for where the incision is made. Is that how you all had it done too? I am worried sick about this, and I just want my dad to have the best information out there as to what to expect. That information I want from my family here, as the doctors dont seem to give all the answers like from the people who have been through it.
Hugs in advance!
Kari

You might think he is eating well, but if he is loosing weight. Apparently he is not eating enough. Most people do not have a lot of problems. I have nothing but good things to say about mine. I think it has a lot to do with who does the procedure. I went through it twice. The first time I was wide awake, and felt everything! The problem there was...they let a greenhorn do it! He had to bail out! Make sure to request a experienced surgeon. Waiting is not good. Heres the problems that happen...1. If he is loosing weight, that means his stomach is shrinking. That makes it a harder target for them to hit (thats why my first attempt went bad). 2. If he waits till his FVC gets much lower, they will not want to use as much sedative, which can make it very uncomfortable for him. 3. Ask about getting a xray before hand. That will give them a better idea of where to go in. The sooner he has it done, the easier it will be on him. The pain is not that bad. It just feels like a strained muscle for a few days. My biggest complaint was spending the night in the hospital. I was bored to death!

The sooner the better. It will improve his quality of life. I know there are some people who have had a rough experience but I did not. It was simple, quick and painless. Make sure you find a gastrologist that has done a few.

PEG

My husband just got one a week ago (age - 49). The procedure went very smoothly - 15 minutes. He had the #1 GI here in Memphis. The main problem we had was that we were not given good information / instructions . A few days after the procedure, my husband's stomach swelled and the plug was too tight. This caused a minor infection. It really hurt him, and unfortunately, it was over the weekend. Once the plug was loosened, the pain went away. He is now on a big antibiotic and all is well (except that we were told not to flush it until we start using it, and no one else has ever gotten that instruction).

Like Joel said, some here have had problems with the peg tube placement and while mine wasn't as smooth as his I have not had any problems with it since it was put in in Feb 2009. The most important thing is to get it as soon as you can and make sure that you get a surgeon who knows what he is doing.

I had my initial placement done under a general anesthetic with a full anesthesiology team present because I reacted badly the first time they tried it under a sedative but that was just my weird system.

As far as eating problems go, if he is losing weight he needs a peg. It is true that lettuce and spaghetti are some of the hard to eat things at first but eventually it will be all foods and liquids so the time is now, not later.

I was definitely better after the tube, more energy and have regained 20 of the 40 pounds that I lost when I was starving.

Good luck and get the tube!

Well, that is 3 of ya. I am glad to hear that you all have had good recoveries. Of course I am still freaked out. I am all for getting a peg, its my fear of what happened to Linda, Jay and Web that has me on edge. I see what little energy my dad has now, and I am scared that he will do the down hill thing and then level out, but not ever even get back to the level of energy he is at right now. Have I mentioned I HATE this f*ing disease yet today?! I hope I get more answers from others out there, and for my sweet friends here who have answered me, I sure appreciate all the advice! It is always best to hear from people who have had it done and what they went through, rather than relying on doctors.
Love you all!
Kari

FYI - Big improvement today!

So happy to hear that! Hope it continues.

Oh Missy, that is great news!