Re: Debbi's story for and anyone else who cares, (was: Redheads & Anesthesea)

[Guest guest]

Debbi,

Thanks so much for sharing your story. It does seem like you do

keep such good track of all of us and always offering all the advice

we seem to need. EVERY post I read....and I mean all of them, you

seem to have been there and done it so I can't immagine what you have

been through. You wrote the book and it is good to finally know the

story behind the lady. By the way, is that your picture in

the " photos file " ?

Anyway, your history duplicates so many of ours I am sure...down

to your description of the " Lamaze " breathing.....my kids say

instinctively, ....leave Mommy alone, she is waiting to swallow.

And here I guess I assumed like so many others that you had already

had the big operation....and here I was going to get ready to fire

off all my other questions to you. You probably know all those

answers anyway from keeping such good track of everybody.

I am so glad that you have it under some level of control at the

moment and can at least live somewhat normally. I know your support

has been a godsend for me and I can't tell you how much I appreciate

it.

By the way, is your GI that you get your barium swallow tests etc.

done at still at the Cleveland Clinic or do you do those closer to

home? Just curious isfsome of those things can be done locally.

Joy

[Guest guest]

Hi Debbi!

Wow, this is a long time to be dealing

with this dysfunction. I think 11 months is a long time… You are

sure a strong woman. It helps to have a supportive husband, I know he is

absolutely my sanity saver most days! Thanks for your story. With

all the info put out there, I swear you would be this Dr. Rice everyone talks

about!!

Information is absolutely the key, and I

am glad I have slowly been tightening my grip on it. Good luck with your

case, and we are all here to listen as you are every day in and out!

Chilliwack, BC

Debbi’s

story was below…. Long oh, no, short story was below…

[Guest guest]

Debbi, Thanks so much for sharing your story. It does seem like you do keep such good track of all of us and always offering all the advice we seem to need. EVERY post I read....and I mean all of them, you seem to have been there and done it so I can't immagine what you have been through. You wrote the book and it is good to finally know the story behind the lady.

Thanks for plodding through it all! Like I said, that was the SHORT version! LOL

On a more serious note, I've said here in the past that being able to help people in this group find information that's helpful to them is actually helpful to ME as well -- this disease just sucks, plain and simple, and if I have to have this disease, I want to at least be able to get something GOOD out of it by making it easier for others to find doctors and info and meds, etc. It makes me feel like at least me getting this disease and going through what I've gone through wasn't all "for nothing" if that makes sense. So what if I had to get bad advice from bad doctors back in the 1990's..... if I'm able to take that experience and help prevent TEN people from having to go through that, then it was worth it! Even something as simple as setting someone's mind at ease by letting them know what to expect when they go for manometry -- if it helps them not be scared, or if they can make the procedure more comfortable because they've been forewarned (forearmed!) about telling the technician if something's painful, etc., then all of my experiences were "worth it". It's probably a bit of a Pollyanna personality mixed in with the "Pay It Forward" concept... I just want to help people in any way I can to kind of "make up for" people who have helped me in my life. (For people who aren't familiar with the movie "Pay It Forward", basically you do nice stuff for someone else after someone else did something nice for you -- instead of "paying the favor back" to the person who was the one that actually helped you, you instead "pay it forward" to someone else. So if some nice man stops and changes my flat tire for me at the side of the road, if he was just doing it out of the kindness of his heart rather than a desire to get me to pay him $20.00 for services rendered, then along the lines of the pay it forward concept, I would help someone else in need at some point in the future... maybe mow a neighbor's lawn when they're feeling ill, or help someone find a lost dog, etc.)

By the way, is that your picture in the "photos file"?

Yep, that's my family in the "Debbi" folder, although those family pictures are about 2.5 years old. ) The picture of "mini stud muffin" is from this year, though.

Anyway, your history duplicates so many of ours I am sure...down to your description of the "Lamaze" breathing.....my kids say instinctively, ....leave Mommy alone, she is waiting to swallow.

I wondered when I wrote that Lamaze part... why have we used so many references to pregnancy this week? The "baby myotomy" and being "permanently pregnant" and now the "Lamaze" method -- how funny that they all came up this week!

And here I guess I assumed like so many others that you had already had the big operation....and here I was going to get ready to fire off all my other questions to you. You probably know all those answers anyway from keeping such good track of everybody.

When things come up about the Heller, I generally pull up info from what others have posted about the topic, as in: "'s husband Chet had an open procedure over a year ago, and his experience was yada yada yada..." Anyone who has read all the messages for a couple of years can easily see the "normal" trends, such as an increase in NCCP frequency immediately after surgery, which then fades over the next month or two. So when someone like Debbie from NJ (aka Debbie from where the guy was born, not where he grew up! LOL) joins the group and is having post-op NCCPs, even though I haven't had surgery I CAN relate that many people in this group seem to have more NCCP right after surgery, but for most people they seem to subside in a month or two. That's the wonderful thing about this group... because we're from all over the world and from all walks of life and with different doctors, we can combine ALL of our experiences and knowledge into this huge database of info. I honestly believe that anyone who has read the messages here for six months probably knows WAY more about achalasia than pretty much any GI specialist -- with the exception of the GI specialists who have the sub-specialty of swallowing/esophageal disorders (such as the docs at TCC, or Mayo, or Dr. Reardon in TX, or the other docs that we see mentioned here who are experienced with achalasia.) Obviously someone who has treated 50 achalasia patients is going to be well-versed in the subject (at least one would HOPE so!), but the typical GI doctor might not see one single achalasia patient in 40 years of practice! That's why it's imperative (and why we harp on it so badly to new members to the group!) that you try to find a very experienced GI and/or surgeon. This is not the type of treatment where you want the doc to be saying, "Well, I've never actually done one of these before, but I saw a video about it in med school 15 years ago, so I'm sure I can do it!" )

I am so glad that you have it under some level of control at the moment and can at least live somewhat normally. I know your support has been a godsend for me and I can't tell you how much I appreciate it.

Like I said, hearing that something I've said (ok, typed!) here has been helpful is a godsend for ME too! Having a disease like this makes you appreciate what a "normal" life is soooooo much more than you did before, and I'm grateful that I can not only live (relatively) normally right now PLUS help others to find that "relatively normal" stage in their disease, too. We're gonna have achalasia forever -- surgery or dilation only treats the symptoms, not the disease -- but we can and do live a full life in spite of the disease, if we get proper treatment when we need it.

By the way, is your GI that you get your barium swallow tests etc. done at still at the Cleveland Clinic or do you do those closer to home? Just curious isfsome of those things can be done locally.

I had my barium swallow done locally today -- I had my general practitioner order the test for me. I'll have the radiologist's report sent on to Dr. Vaezi at TCC to be put into my chart, but as long as things continue to be at this same situation (not spewing 5x/day, not stretching out the esophagus, not aspirating at night), I'm not planning on going back to TCC unless some new treatment standard comes about. But the second my symptoms change, or the second a barium swallow shows that my esophagus is getting bigger, you'll see my Park Avenue on that dang toll road headed to Cleveland! (No offense to Ohio residents, but I've driven all over much of the USA, and 80/90 across Ohio has got to be the MOST BORING DRIVE ever! I mean, it's worse than IOWA... and Iowa's a pretty boring drive! LOL)

Debbi

[Guest guest]

Hi Debbi!

Wow, this is a long time to be dealing with this dysfunction. I think 11 months is a long time… You are sure a strong woman.

, I hope this doesn't depress you, but ten years from now YOU will have dealt with this disease for the past decade, too! )

It helps to have a supportive husband, I know he is absolutely my sanity saver most days!

I am lucky that my husband is great with this too.... I already had this disease before we met, and he wasn't scared off by it at all. Now we make jokes about it, playing off the fact that compared to the "really bad off stage" I now swallow really well (because a "5" on the scale is WAY better than a "1" on the scale) and so I don't qualify for surgery until I'm spewing regularly again. Now if he notices that I've stopped talking mid-sentence and I'm doing my Lamaze breathing, after it goes through our eyes will meet and he'll smile and say, "Because, you swallow really well now!" and we'll both chuckle. Swallowing is one of those things that ya just don't take for granted anymore once you've experienced dysphagia!

Thanks for your story. With all the info put out there, I swear you would be this Dr. Rice everyone talks about!!

Information is absolutely the key, and I am glad I have slowly been tightening my grip on it. Good luck with your case, and we are all here to listen as you are every day in and out!

You're very welcome... the stuff I wrote in my reply to Joy applies here (need to pick up the kid at preschool, so I'm not gonna type it all out again!) It really is gratifying to see others go through the positive emotional change after they come here and learn all this stuff. It's so much easier to cope when you have a "game plan" and a community of support -- isn't this group the greatest?Deb