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DeansWife

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Oct 18, 2011
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197
Diagnosis
08/2011
Country
US
State
AL
City
Fairhope
Dean has finally decided to get the Peg. That news was several weeks ago. We met with the gastro doc and he explained the procedure then I explained that Dean has ALS and extra precaution was needed when they gave him the twilight etc. because of the swallowing/choking issues. He response was, "I do this all the time, it's a easy process and he's not going to be put under". I said that I wanted a lung capacity test done before the surgery and he again said, "well, I don't think it's necessary but it's your choice. I do this proceedure several times a week". Well, thanks doc for giving me permission! On to the pulmonologist - had the test last week and because he could not get his lips to seal on the tube it was inconclusive. The nurse called yesterday and we are scheduled for a PFT (partial) this morning using a mask. I asked her if they see many ALS patients and her response was "well, not really". Wow! I guess I'll now have to take on the roll of teaching these doctors about ALS. Believe me, I will! Oh yes, I called his neurologist about the comments the gastro doc made and they have consulted with him. The neuro's nurse called me back and said that she received the consultation back and the gastro signed off. She said it explained Dean's condition so that he would understand this isn't a common case of Peg. I'm just so baffled at how little knowledge these doctors really have. Hopefully after the PFT today, we can proceed and get the surgery scheduled without fear that Dean will encounter problems during the proceedure and after.

I'm ready to move to Montgomery so we can begin his treatments at the VA Medical Center - at least they know what ALS is!

Thanks for listening, kinda venting. A word to the wise - ask questions and insist on answers. You or your loved ones lives may depend on it! I'm learning - slowly :grin:
 
Don't count on the fact that everyone you deal with at the VA will know about ALS. We are very fortunate that we have a few doctors here that most of the ALS patients go to (gastroenterologists, pulmonologist, neurologist) so they have developed some expertise. At our VA, very few doctors really had experience with ALS. Fortunately, our neurologist's grandfather had ALS, so he was very familiar with it. The other doctors at the VA were very receptive to any information I brought in to their office. You're in my thoughs!
 
I agree with Missy, Rog's VA doc is a nut... Rog had a g-tube put in at UCSF using his BiPAP and minimal anesthesia... Dr. K I e r n a n was the doctor and has done many of them. Have your doc contact him. We are at clinic today, I'll ask if it's been written up in a journal somewhere. My thoughts are with you.... Oh and if he takes a blood thinner don't until the wound heals
 
I had the same sort of experience with my Pulmo. It's clear that he doesn't know much about ALS. Of course they don't. They don't often, if ever, see a case of ALS but you'd think that when they do they'd do a little research!
 
Marta, I wonder if its too much trouble. When my sister was undergoing chemo, I had to tell my son's doctor that he needed to get the IPV and not the OPV. Aren't they the ones who get paid the big bucks?
 
Deans wife, I'm glad Dean changed his mind. I'm happy for you. Let us know when the upcoming surgery is.
 
Had the PFT test today and it is OK. Now waiting to hear back from the gastro's nurse to schedule the procedure.
 
Remember to keep us informed. I started a prayer chain in the Christian threads, "Pray for..." . You may add Dean's name or contact me and I will add to it.
 
We too encountered that all over the place, medical professionals with no experience, exposure, no clue what ALS entailed. I found myself being the educator over and over. A lot of people just didn't "get it" or understand the particulars in the care.

The arrogance you experienced from gastro upsets me. I hate arrogance almost as much as I hate ALS!
 
Well, we are on go for the Peg tube. Monday at noon is Dean's report time to the hospital. Stopped by the gastro's office this evening for a proton (?) blood test and the nurse and I had a good talk. She completely understands my concerns and said the the gastro had a better understanding now since the consult from the neuro. Pray to God that's so. His pulmonologist shares office space with the gastro and he came out and talked to us about the results of the second PFT. He said he knew the first one was bad because it only registered 15! That's because he could not get his lips around the tube. The second test was done with a mask and came out at 73. Big improvement!

So, come on Monday. Dean is past ready, his words. I'm ready also. Now I have a question though. How do you travel with the tube? We are looking at a car trip from S. Alabama to Elkhart, IN. Two days of driving. Can he feed himself while my daughter or I are driving? Always something, huh? I would also like to plan a cruise (had to cancel one this past Feb). Wonder how the Peg will affect doing that. Whoops, that was two questions, sorry.

Toto - yes, please add him to the prayer list that everything goes smoothly without complication. Thanks. I'll let ya'll know how we (he) makes out.

Thanks for your knowledgeable answers and concern. {{Hugs}}
 
Good luck on Monday! I'll be sending prayers! Is Dean going to be on formula or will you be preparing his food? Rog is on formula and can feed himself in the car, just have water that he can use before and after in his syringe. You will have options on how he gets his food into the tube; bags and gravity, syringe by gravity and syringe with some pressure. We are going on a cruise in Europe in June. We are sending his food ahead to the cruise line. You'll need a letter of fitness from the doctor and the cruise line will tell you what the letter needs to include. If you are flying to get there, have the doctor write a separate letter that says he needs assistance from gate to gate so he doesn't have to walk forever. We also have two trips to Tucson planned. one flying and one driving.

Thinking of you,

Jen
 
Jen, Won't know about the feeding until Tuesday when the nurse comes to instruct. I plan on using up the two cases of Boost unless there are reasons why we can't but our neuro says Boost is OK, just needs a min. of 5 cans a day.

You make it sound easy with the travel. Wonderful. So he can feed himself in the car while my daughter or I are driving. That sounds really great! Do you have to stick to a feeding schedule or is it flexible?

Now I'll consider looking for a cruise. Won't be flying as we'll sail out of New Orleans.

Thanks for the info. {{Hugs}}
 
So glad things are coming together for you guys! We'll keep Dean and you in our prayers.
 
I'm so glad to hear that he changed his mind! Please do let us know how it goes. We care!
 
Our schedule can get pretty hectic so the meal times are flexible....He eats when he's hungry and we have supplies in an insulated bag that we pop in the car along with a hanger to hang on the handle above the window for the bag. I miss eating meals with him, but I don't miss the choking and gagging and all the other worrying stuff; he's getting enough calories, his weight is stabilizing and I can go to work without that worry. Yes, it's a loss of independence, but the trade-off?

Jen
 
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