Tuesday, December 11, 2012

All about achalasia

Hi everyone!  *waving*

I hope you all are doing well!! I thought it was a good time to check in & give an update on what's been going on here.

Last we met it was August & I had posted some pictures from our Disney trip. Since then ...let's see ... another school year began .... a son turned 14 ("2 more years till I can drive, Mom!" - yikes!) ... & my husband has his esophagus removed. Yep, you read that right -- did you know you can survive without your esophagus? 

20 years ago when we started dating, I thought he did some odd things when we went out to dinner. He always had to have a full glass of water, no ice -- he sometimes leaned to one side & pulled his shoulder back -- & once in a while he even stood up for a few minutes. He told me that sometimes he had a hard time getting food down. We were married a few years when his previous doctor decided he needed his esophagus stretched. That didn't help at all -- in fact it seemed to make things worse. 

Fast forward to summer 2008 -- he was really having trouble getting things down & was throwing up a lot. It didn't seem really like he was throwing up like vomiting -- it seemed like things were never going down in the first place. By the last week of July he couldn't even swallow water & we ended up in the Urgent Care. He was sent to a GI dr & a few tests later, was diagnosed with a very rare disorder called Achalasia. Never heard of it? Neither had we. You can read about it HERE -- but basically the muscle at the base of his esophagus wasn't working, so food wasn't getting into his stomach. He ended up having a Heller Myotomy, which for many patients is the end of the problems. 

6 months later the throwing up started again. It would last a few weeks, then he'd be better. He kept saying he was just sick -- had the flu -- & wouldn't go to the doctor. Over the next 4 years this was the source of many arguments between us. I knew something was wrong - whether it was the achalasia acting up again, or something else I didn't know - which is why I begged him to go to the doctor. For 4 YEARS he didn't go -- every couple of months he'd have a bout, then it would go away. Up & down, up & down -- a huge roller coaster.

He was sick while we were in Disney. His parents got to see how bad he was. Maybe that was the turning point. Maybe it was the fact that after 19 years at the same employer, he actually had to call in sick for the first time because he couldn't function. He was scheduled for an endoscopy the Friday before Labor Day. Only they couldn't do it, because his esophagus was so full of fluid & food. So he had to go in again the day after Labor Day. This time they sedated him, & suctioned everything out. Then they told him his esophagus was completely stretched out & he'd have to have it removed.

Did you know if an esophagus stretches, it will never go back to its original shape? The esophagectomy was his only option if he ever wanted to eat again. Luckily, I had joined a fantastic forum after he'd had his surgery 4 years ago - these people all suffer from achalasia. It was wonderful chatting with them - this disorder is so rare, nobody knows what goes on except those who have it, or know someone who has it. I knew this was a serious surgery. I knew the recovery was loooooong - & because he has a very physical job I knew he'd be off work for quite a while. Well, the surgery only took 2 1/2 hours (after I'd been told it would 5-6 hours) & it went well. Unfortunately this is also a PAINFUL surgery & when I saw my husband after, well let's just say there wasn't enough morphine in the hospital to take away his pain. He was in the ICU for a week -- 3 days after that he was home, with a feeding tube in his stomach. He's hooked up to a computer & we have huge supply of baby formula-type stuff that we fill his bag with. 

It's been about 7 weeks now & he's doing pretty well. He still has the tube but he is able to eat some things, like cereal, applesauce & soft crackers. He goes for walks daily. He's anxious to get the tube out & get back on the road to a normal life. Through this whole thing, I've been telling him to focus on the cheeseburger at the end. He should be able to eat anything once he's healed, which is more than I can say for the last 20 years of his life.

Unfortunately the amount of medical bills is overwhelming, & the future of his job is unknown. Apparently there will be layoffs, we just don't know if he'll be one of them. We went to his holiday party on Sunday & WOW -- let's just say I'm grateful for my fabulous employer & all they do for us. My husband is pretty tight lipped regarding things at work but I sure got an earful Sunday from his co-workers! 

Please think good thoughts for us as we get through these next few months. I'm glad the surgery was successful & he's getting better every day. He was only 137 lbs (fully clothed!) the day of his surgery -- & he is 6'2"! He has already gained about 15 lbs & everything looks good so hopefully the rest of his recovery goes smoothly. But we are facing other unknowns during this holiday season so we can sure use all the virtual hugs we can get!!!

Well I had planned on posting some pictures of some fun things we've done lately but I guess this was meant to be a downer post LOL. I will post pics later this week because we really have had some good stuff going on too :)  Holiday outings & parties & such.

If you actually made it this far, thank you for reading!!!!! I promise I''ll be back soon with a happier post :)


Cheryl said...

Yes, prayers and more prayers to you and your family!! Does your husband know how fortuneate he is to have you? I expect he does!
We take something as simple as being able to eat for granted, don't we?
Blessing for the holiday season!

dragonfly60 said...

Thank you for making me put my life in perspective! Many blessings and good health to you and your family; I will keep you in my prayers.

Tammi said...

What a difficult thing to go through, a hug and lots of prayers for a full recovery asap!

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