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Alberta is 2 hours behind us Rose. Should hear by 6 or 7 our time I'd think.

AL.
 
Hello everybody, thanks for all the kind words and encouragement. I'm finally home in my own bed with a new appendage (and keep your minds out of the gutter, now). The peg placement went ahead on Thursday as planned but someone forgot to tell my breathing muscles about it. The last thing I remember is the nurses tying down my hands to keep me from "helping" and the next thing I hear is the gastro doc telling me that I have to come back again tomorrow. Apparently I don't like sedatives, who knew? So round two on Friday was with a general anesthetic and the whole team and it went well. The only problem is that because I like three hours away from the hospital the surgeon decided that I had to stay for Saturday and by the time they found out that there was noone to show us how to do stuff with the tube it was Sunday. Anyway lots of very nice, young pretty nurses to take care of me so I didn't mind too much.
I don't feel too bad and it only hurts when I laugh, or cough, or sneeze, or bend over.
 
Barry ... so glad it's over and you're OK.

Geez ... there's got to be a Murphy's law for PALS. Everything that can go wrong in a clinic/hospital/doctor's office will go wrong. What kind of karma are we all paying off?

Anyway, glad you survived (!) and are home. Try not to laugh, sneeze, cough, or bend over.
 
Thanks Beth, you know I was doing great on the not laughing part until I read your post about your g-grandmother and her tea cup skills. Now I'm really sore but it's worth it.
And you're right about Murphy's Law, the gastro doctor who operated on me said that even though my breathing was good at 98 percent as soon as they gave me the sedative I started having real trouble breathing. He also told me that the neurologist who's the head of the ALS clinic believes that PALS are more sensitive to narcotics that others. I don't know about that but I do know that when I was strapped down with my mouth propped open I was not feeling good about it. I know that I can't sleep on my back very well as my throat seems to close up and I can't swallow very well. Maybe that was part of the problem? Once they had the anethetist involved it was all ok, he told me that if I had trouble breathing again he could take over and make sure that I was ok. I was impressed with the doctors, nurses and technicians that cared for me but then it was the weekend (and a long weekend here) and all of the dieticians and homecare workers were nowhere to be found. If not for the fantastic nurses my wife and I would have been left on our own to figure out how to use and care for my new tube. Oh well, that's my gripe for the day. Cheers!
 
Glad you're ok Barry. Happy Family Day. At least that's what they call it here in Ont.

AL.
 
Hey Barry
Glad you came thru it all ok after all was said and done! Too bad the Victoria trip didn't work out this time but hopefully will soon! It is one of our favorite places too!
Here in Manitoba it is 'Louis Riel Day' - don't you love Canada....we have a lot of creativity when it comes to getting days off:)
 
Barry - When I got my PEG tube last August it was with a general right away since they were concerned about my breathing. Been 6 months for me now and there is no more discomfort at all so you can look forward to that going away and life being a lot easier. My biggest problem is accidently pulling the plug and draining whatever is in there out onto the floor. Not a pretty sight. Glad the surgery is over and you can move on.
Dan
 
Barry ... I've got to share some of my ghastly-but-true adventures with hospitals.

Almost 3 years ago (March 06), went in the hospital for a "routine angiogram" to see why I was short of breath. During the angiogram, the cardiologist poked a hole in a vein/artery/whatever, and I was rushed into emergency open heart surgery. I had been taking Plavix ... blood thinner ,,, and they could not stop the bleeding. 18 units of blood transfusion later, they got it under control. When I was released 3 weeks later, I had slurred speech and other symptoms, which have now been diagnosed as ALS. I'm sure it was there before, but did not have noticable symptoms until this mess-up in the hospital.

Two years ago, during a routine colonoscopy at an out-patient clinic, I was given excess fluids during the procedure (I heard nurses talking about this later, which is why I know what happened. If you lie on a gurney with your eyes closed, people think you don't exist.) The excess fluids triggered congestive heart failure. The clinic did not have a working EKG marchine ! There followed a frantic ambulance ride to the nearest emergency room. After I'd pee'd out all the fluids they'd administered, I was fine. Drove home 14 hours later.

After that, in a "routine" operation on my ear, during which I was supposed to be awake, they knocked me out and I woke up with EXTREME vertigo and extremely worsened speech. It's never recovered.

December before last, I was rushed to the hospital with respiratory failure. This was before any neuro diagnosed. The ER did an angiogram (again with the angiogram), during which "something happened" and I started bleeding into my abdomen. The doctors did not realize this, and were frantic when I went into shock. Don't know how long it took for them to notice I was bleeding out into my abdomen, but it was a while, and it was "touch and go" they told me later, until they spotted the problem and managed to stop the bleeding. This resulted in almost three weeks in the hospital (over Christmas) until I was released.

Fortunately, my tube installation went smoothly. I guess you got all the SNAFUs on that. Lucky you.

I think you're absolutely right about ALS patients being more sensitive to meds. I sure am. All these were supposed to be done in twilight sleep, but the meds put me under.
 
Coincidence

Beth, my father's bulbar symptoms also began after an angiogram. His was uneventful and aferwards the cardiologist prescribed several meds: Plavix, Lipitor, (even though his cholesterol was normal) and one other medication which I can't remember off-hand. My father immediately experienced severe side effects from the Lipitor and asked to be taken off, the cardiologist encouraged him to stay on it and see if things got better. My dad could not endure the pain and cramping in his legs caused by the Lipitor and sought a second opinion from a doctor who concluded he was indeed over-medicated. My mom noticed that his speech sounded slightly slurred and as he was weaned off the Lipitor, his leg pain and cramping went away but his speech did not improve. Over the course of several months it deteriorated slowly and a year later he was diagnosed with ALS. My dad is convinced it was caused by the Lipitor. Definitely the drug did not help him and probably did accelerate the process but could it cause ALS? Hopefully one day we will know what causes this dreaded disease. In the meantime my father can barely speak any more and like you all of his symptoms began after the angiogram.

Barry, I'm so sorry that you had some complications but I am very happy to hear that you are doing much better! :)
 
Hi Rick, I hope that ypu had a good Louis Riel day, that seems to be a better name and reason for a holiday than what we have here. Alberta had the first Family day holiday about 20 years ago when Premier Don Getty made it up because his son was convicted of possession of cocaine. I guess Don felt that we all needed a day off in the middle of winter to get more family time. Anyway, I'm still going to make the trip to Victoria but I'm going to wait for a bit until I'm more comfortable.

Dan and Beth, thanks for relating your experiences, I think that in my case if I had to do it again I would definitely push for a general anesthetic over the sedative method. I've now had two sedative procedures , one for a colonoscopy and this last one for the tube and I don't remember anything about either except being dozy and spaced out for a day afterwards. With the general anesthetic I was wide awake right after and felt much better. Actually, I first started to notice that my speech was slurred about a month after the colonoscopy in 2007. While the sedative method is the preferred way to do a peg tube placement because of it's lower costs and overall lower risk I think that someone should be looking at whether it should be used on ALS patients. I am not trying to scare anyone and maybe it's just me but your story, Beth, makes me wonder about how nonchelant the medical community is about using sedatives. I was just as out (and for longer) with the sedative as I was with the general.
 
Coincidence

Hi Thelma, sorry to hear about your Dad, it's hard when you can't talk.

I agree, who knows what connections there are between meds and ALS. The meds probably don't cause the disease but I'll bet that they have more effect on it's progression than Rilutek (and not in a good way).

Barry
 
Thelma ... I sure sympathize with your dad. One of the things that I didn't mention was that when I was released from the first hospitalization, my cardiologist doubled my Lipitor dose, to 80 mg, which I believe is the maximum. I'm quite sure it contributed to the progression of ALS, although I feel that the ALS had been there for a few years, just waiting to pop up.
 
Beth and Barry, I agree with both of you. While I don't believe Lipitor could cause ALS since if that were the case, I would think a lot more people would get it, it certainly makes sense that a medication that inhibits your body from absorbing fat, including essential fatty acids would be detrimental to the progression of a disease that affects the brain. Afterall, fatty acids like those found in fish are brain food. That's why my grandma always said fish would make me smart and it sure did! :)wink:)

Beth, you gave me good advice early on when you said that gaining some weight or at least not losing any would help slow the progression. I told my dad we were going to make him chubby and he laughed of course but my mom has been making him some high calorie smoothies every day! Thanks for the tip!

Being Canadian seniors, my parents take refuge in Florida every year from Dec 26 to April 1. I sure have missed my dad! Especially since now he really avoids the phone because of his speech and his emotional lability. (He cries every time I talk to him.) He's still plays golf and swims every day though and I know the Florida sunshine is doing him some good. In just 2 days I am going to visit my parents and staying for 2 whole weeks. I can't wait!

Thank you both, Barry and Beth, for your insight and kindness! It is so much appreciated. The internet is great isn't it? Who would have thought I'd be communicating with a Californian artist and a Canadian cowboy about ALS?
 
Florida!

Hi Thelma, I'm really more of an "urban cowboy" than a real one but my son caught me trying to look cool (sure Dad) when he took my picture at last year's ALS walk. I got the hat last spring in Moab, Utah when we had a great time touring Arches National Park. I think that one of the best things about living in Canada abd the U.S. is all of the fantastic places in both countries that are easy to visit. On that note, have a great time in Florida. I'm kind of the same as your dad in avoiding talking on the phone so I know that he (and your mom) will be happy to see you. Have fun in the sun!
 
Urban Cowboys are cool

Thanks Barry! I plan on having fun in the sun! It will be so nice to see my parents and my sister is joining us too so it's a family holiday. I haven't been to Florida since I was 9 and unfortunately I won't be close enough to visit the Kennedy Space Center but I will take advantage of Little Havana and spending quality time with my dad. We both love to swim and I'm glad he can still do that. Nature-wise we definitely have an embarrassment of riches here in Canada and the U.S. The Utah desert looks amazing! I like your hat too. I have never been to Utah myself but just finished work on a film that was partly shot there and the scenery is stunning. I hope to see it for myself one day.

I'm sorry you have the same trouble as my dad with talking especially on the phone. I am sad about that. My dad says he prefers not being able to talk to not being able to walk so I'm glad he can still do that. He has a drop foot and uses a cane sometimes but otherwise he can still get around which we are all grateful for. Basically my mom and sister and I just do the very best we can to make sure he knows how much we love and appreciate him. Dads are great and you sound like a wonderful father too.

P.S. I will definitely sign up for the Montreal ALS walk this year!
 
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