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Thu Aug 18, 2016, 10:13 AM

It's official, my wife's surgery has failed

Several months back my wife had surgery for a condition called Achalasia:

Esophageal achalasia is an esophageal motility disorder involving the smooth muscle layer of the esophagus and the lower esophageal sphincter (LES). It is characterized by incomplete LES relaxation, increased LES tone, and lack of peristalsis of the esophagus (inability of smooth muscle to move food down the esophagus) in the absence of other explanations like cancer or fibrosis.

Achalasia is characterized by difficulty in swallowing, regurgitation, and sometimes chest pain. Diagnosis is reached with esophageal manometry and barium swallow radiographic studies. Various treatments are available, although none cures the condition. Certain medications or Botox may be used in some cases, but more permanent relief is brought by esophageal dilatation and surgical cleaving of the muscle (Heller myotomy).

She had a new procedure called P.O.E.M., which uses an endoscope down the throat rather than coming in through the chest wall. Things were fine for a few weeks, but now the symptoms have returned with a vengeance. She had a Barium Swallow Test yesterday and today the doctor confirmed no improvement. They want to try a balloon dialation but he has warned us that he suspects a complete esophageal resection (removal of the esophagus) is probably where we are going to end up. Not good. The recovery period is close to 6 months.

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Reply It's official, my wife's surgery has failed (Original post)
Currentsitguy Aug 2016 OP
ProudNYSTaxPayer Aug 2016 #1
Currentsitguy Aug 2016 #4
WhiskeyMakesMeHappy Aug 2016 #2
Currentsitguy Aug 2016 #5
Gunslinger201 Aug 2016 #3
Currentsitguy Aug 2016 #6
oldenuff35 Aug 2016 #7
Currentsitguy Aug 2016 #9
oldenuff35 Aug 2016 #10
Currentsitguy Aug 2016 #12
fools_gold Aug 2016 #8
Currentsitguy Aug 2016 #11
Boadicea Aug 2016 #13
Currentsitguy Aug 2016 #14
Boadicea Aug 2016 #17
Currentsitguy Aug 2016 #20
Jardinier Aug 2016 #23
Immacolata Aug 2016 #26
Currentsitguy Aug 2016 #36
Immacolata Aug 2016 #43
Doctor_R Aug 2016 #15
Currentsitguy Aug 2016 #33
Doctor_R Aug 2016 #34
News2Me Aug 2016 #16
Currentsitguy Aug 2016 #32
cologeek Aug 2016 #18
762Justice Aug 2016 #19
Jardinier Aug 2016 #21
Currentsitguy Aug 2016 #31
Jardinier Aug 2016 #40
Currentsitguy Aug 2016 #41
Jardinier Aug 2016 #42
GoodCraic Aug 2016 #22
Currentsitguy Aug 2016 #30
GoodCraic Aug 2016 #35
Currentsitguy Aug 2016 #38
quad489 Aug 2016 #24
Currentsitguy Aug 2016 #29
Attila Gorilla Aug 2016 #25
Slayer Aug 2016 #27
Currentsitguy Aug 2016 #28
nolidad Aug 2016 #37
Currentsitguy Aug 2016 #39
nolidad Aug 2016 #45
Bubba Aug 2016 #44
MedusasRage Aug 2016 #46
Currentsitguy Aug 2016 #47

Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:17 AM

1. I'm so sorry you are going through this

if you ever need to chat, just someone to drop your troubles on let me know.

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Response to ProudNYSTaxPayer (Reply #1)

Thu Aug 18, 2016, 10:21 AM

4. I appreciate that

I really do.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:17 AM

2. That is just horrible to read. I am so very sorry to hear about your difficulties.

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Response to WhiskeyMakesMeHappy (Reply #2)

Thu Aug 18, 2016, 10:22 AM

5. Well I did promise

In sickness and in health last summer. I just hadn't realized it would be so soon or so severe.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:20 AM

3. Oh Shit, so sorry to hear that

I've done that Barium Swallow myself

Something I don't hope to repeat

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Response to Gunslinger201 (Reply #3)

Thu Aug 18, 2016, 10:23 AM

6. It sucks

Particularly last night when she spent most of the night regurgitating Barium (as a result of the achalasia). I'm sure she can assure you it tastes even worse on the way back out.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:24 AM

7. I wish you and yours the bets of luck in this.

We went through this with my mother.

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Response to oldenuff35 (Reply #7)

Thu Aug 18, 2016, 10:27 AM

9. Really?

What was the treatment and outcome, if I may ask?

There is just so little info out there about this.

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Response to Currentsitguy (Reply #9)

Thu Aug 18, 2016, 10:30 AM

10. They did to her what is coming for your wife and it didn't help much.

Not long after other significant problems were detected and things got worse from there.

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Response to oldenuff35 (Reply #10)

Thu Aug 18, 2016, 10:33 AM

12. I am so sorry to hear that.

We are putting together a website, in conjunction with a doctor out of Cornell that we would like to solicit some background information from patients. We are hoping perhaps we can see if there is some previously unknown trigger that sets off the autoimmune response.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:26 AM

8. So sorry to hear that

As I get older (I'll be 68 on Saturday) I realize more and more how profoundly we are affected by the myriad of medical conditions that may afflict us, and at any age, toddler to oldster. I just found out yesterday that one of my high school classmates is in hospice care after a long battle with cancer. It really makes us become aware of and contemplate our own mortality.

I hope your wife's docs can come up with a successful procedure and reduce her (and your) suffering as much as possible.

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Response to fools_gold (Reply #8)

Thu Aug 18, 2016, 10:30 AM

11. Thanks.

I wouldn't wish this condition on my worst enemy. You really don't realize how difficult life can be until you see someone literally unable to drink a glass of water.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:40 AM

13. I am truly sorry. I hope you and she have the best outcome. You will be in my prayers.

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Response to Boadicea (Reply #13)

Thu Aug 18, 2016, 10:43 AM

14. I appreciate it

It really has destroyed our, and particularly her, quality of life. She is basically unable to work, and considering she is the revenue generating side of our business, left us in a pretty bad place.

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Response to Currentsitguy (Reply #14)

Thu Aug 18, 2016, 10:52 AM

17. That is terrible.

it's none of my business, but....

Coming from a medical billing backgound, I would suggest that if she qualifies for any kind of assistance, to try to get started on that as soon as possible. Disability claims are usually denied the first time and take about 12-18 months for approval. If your income level can qualify her for medicaid, that could help offset some of the costs. Depending on her age and disability level/type, she may qualify for medicare as well.

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Response to Boadicea (Reply #17)

Thu Aug 18, 2016, 10:55 AM

20. Well we are lucky in one regard

Insurance is denying a second procedure and we are appealing, however we have two good friends; a GI surgeon and his office manager who have offered to perform a dilation free of charge for us. If, and when, insurance comes around, they said they'll bill them.

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Response to Currentsitguy (Reply #20)

Thu Aug 18, 2016, 11:42 AM

23. I was denied coverage for a surgery once.

The insurance company called the surgery ‘experimental’. I was devastated and to add insult to injury the woman who signed the denial letter drew a smiley face next to her name!

My surgeon had a peer to peer review with the insurance company and they covered it.

The surgery was very successful but cost a total of $60,000.

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Response to Jardinier (Reply #23)

Thu Aug 18, 2016, 12:05 PM

26. A freaking smiley face? Unbelievable. nt

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Response to Immacolata (Reply #26)

Thu Aug 18, 2016, 06:32 PM

36. That would likely send me over the edge

If you saw me in real life I'm the most mild mannered sort of person you would ever know; that is until my VERY long fuse burns out. Then I basically go insane. I'll fight like a cornered wild animal to protect those I love.

We both had that talk last year before we took the plunge and made it plain if we commit, each of us got 100% of each other. I don't commit or devote half heartedly or with reservations, nor does she. I would march though combat gunfire for her and she would do so in turn.

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Response to Currentsitguy (Reply #36)

Fri Aug 19, 2016, 12:52 AM

43. Ha! I used to be like that.

Until I learned to just let it out! Now it's the opposite problem.

Sounds like you've got a great partner - hang on tight!

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:50 AM

15. Sorry to hear that.

If you need to talk, I'll give you my number.

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Response to Doctor_R (Reply #15)

Thu Aug 18, 2016, 06:27 PM

33. I really appreciate it.

If I reach that point, I'll let you know.

(He says as he slinks off to make a calming cocktail)

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Response to Currentsitguy (Reply #33)

Thu Aug 18, 2016, 06:29 PM

34. The Steelers are on.

Doing well this drive too.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:51 AM

16. I'm very sorry to hear that. I hope the less invasive procedure is successful.

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Response to News2Me (Reply #16)

Thu Aug 18, 2016, 06:26 PM

32. Trust me

we do to. (fingers crossed)

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:53 AM

18. Sorry to hear this.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 10:53 AM

19. Sorry to hear it man.

Illness in family members sucks. I would rather take the pain myself than let them bear it.

Best wishes on her future recovery.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 11:11 AM

21. I’m so sorry your wife is going through this.

How long has she had achalasia?

I did some reading about achalasia and esophageal surgery. It is drastic but sounds like once the body has adjusted it will help. Try to stay optimistic.
http://www.healthline.com/health/esophagectomy-open#Outlook7

Keep us posted. I will be thinking of her.

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Response to Jardinier (Reply #21)

Thu Aug 18, 2016, 06:25 PM

31. It was really weird

They say it is supposed to take years or even decades to get this bad. Hers took less than 6 months. Even the doctors are baffled. Barring something like a stroke or cancer, they have never seen it this aggressive before.

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Response to Currentsitguy (Reply #31)

Thu Aug 18, 2016, 06:49 PM

40. I’m sorry to hear that.

Hang in there.

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Response to Jardinier (Reply #40)

Thu Aug 18, 2016, 06:52 PM

41. If I recall you said at one point you were from the UK?

She was born in Lambeth and grew up in Shropshire, Ironbridge. They came over when she was 9.

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Response to Currentsitguy (Reply #41)

Thu Aug 18, 2016, 07:29 PM

42. I have been to Ironbridge!

In 1993 or 94 I took my youngest son camping with my parents in Shropshire and then on to Wales. I remember walking across the lovely old toll bridge. There was a list of the different tolls that was fun to read. It’s beautiful there!

The Ironbridge Gorge has great museums and I remember we went to this early industrial site that was just fascinating. My son loved it.

I’m feeling a bit nostalgic thinking about it now because we were all so fit and healthy then, hiking in the hills, sleeping rough. Now my parents are very old and unwell. On that trip they were the age I am now. My health has been failing for about 8 years. I couldn’t even begin to hike like they did on that trip. Life can be so unfair.

Your wife was born a London girl! Bless her heart.


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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 11:24 AM

22. Very sorry for everything you're both going through.

At least you have one another. I hope her treatments work and she has a full recovery.

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Response to GoodCraic (Reply #22)

Thu Aug 18, 2016, 06:22 PM

30. Thanks

She is my life, and I am hers. I almost feel as if I am going through this right with her. We came together late in life (friends since about 40, married 8 years later, but I feel as if I have known her all my life.

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Response to Currentsitguy (Reply #30)

Thu Aug 18, 2016, 06:29 PM

35. It may not seem like it, but you both are extremely lucky.

Most people never find THAT person.

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Response to GoodCraic (Reply #35)

Thu Aug 18, 2016, 06:36 PM

38. The key, at least from my experience

is to be friends long before anything else. We were friends and colleagues at our prior employment for years before we took it to the next step. She is not only my life partner, most importantly she is my best friend. Even when we are short on words I simply feel better sharing the room as we both read.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 11:48 AM

24. Wowzer, make sure you get a few more opinions before allowing them to remove the esophagus...

...doctors wanted to do that to my father for non-cancerous growth in his esophagus and we had him to to other doctors to find one who went in there and, to put it simply, dremel'd cut out the growth (sucked out the pieces) with no return so far. Definitely get many opinions before doing anything major......................

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Response to quad489 (Reply #24)

Thu Aug 18, 2016, 06:20 PM

29. We are

She signed up on a website for clinical trials and amazingly a doctor from Cornell called the next day. He wants to see her so we are probably driving up to NYC (oh joy ) soon. He seems to think a redo of the prior procedure, but more aggressively is the proper followup.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 12:05 PM

25. Hope you find the best procedure and it's successful.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 04:14 PM

27. Sorry to hear that.

 

Out of curiosity does she take any medications at all, including low dose aspirin?

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Response to Slayer (Reply #27)

Thu Aug 18, 2016, 06:18 PM

28. Only one

She is on one, HRT (hormone replacement therapy). Beyond that, nothing. Well, post surgery they had her on all kinds of shit, mostly things for acid reflux, but she had a week long allergic reaction that was scary. Basically she got hives so bad she looked like the Creature From The Black Lagoon. She even had them in her hair and between her fingers and toes! We have a Jacuzzi tub and she basically lived in jetted Aveno baths the whole time. I had to rush her to the emergency room as she was going into anaphylaxis. We still don't know which one did it. They took her off everything at that point.

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Response to Currentsitguy (Original post)

Thu Aug 18, 2016, 06:35 PM

37. Don't know if you believe in the power of prayer, but I do.

I shall pray for your wife and you both at home and in my church (anonymously there)

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Response to nolidad (Reply #37)

Thu Aug 18, 2016, 06:40 PM

39. I don't but

I appreciate all the help we can get. Seriously.

My mom keeps saying rosaries and I would never attempt to dissuade her.

Please take this in the spirit intended:

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Response to Currentsitguy (Reply #39)

Fri Aug 19, 2016, 05:26 AM

45. I have! And am grateful!

Will pray

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Response to Currentsitguy (Original post)

Fri Aug 19, 2016, 02:07 AM

44. Very Sorry.

I hope for the best for both of you.

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Response to Currentsitguy (Original post)

Fri Aug 19, 2016, 11:29 AM

46. I'm terribly sorry.

My spouse had a massive heart attack back in February and also a couple of other chronic conditions. Things started going downhill in regard to his health a few years ago and it just feels like there's no end, although I keep getting my hopes up whenever they switch a medicine or he gets a new doctor. He's been in the hospital three times this year so far and each time I think it's the end. I cry a lot but I try not to in front of him as it makes him upset and then he feels like he has to take care of me. I don't trust doctors anymore (prescriptions are not the answer for everything) and I don't believe many of them can think outside the box, which is necessary for certain conditions. My husband is a good man who would help anybody. He's also a good patient and does exactly what the experts say to do, and it all just seems unfair sometimes.

I try to do what they say to do if you are the spouse or partner of someone with a chronic condition. For example, i take time for me. It's major stress and I just wish I could give you a real hug.

I didn't mean to make it more about me, but I have found it helps somewhat to know you're not in the boat alone.

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Response to MedusasRage (Reply #46)

Fri Aug 19, 2016, 01:11 PM

47. I really do appreciate that

It has really been just one thing after another, both before and after our wedding.

We have in the past 8 years:

Been sued by our former employer for stealing clients they themselves asked us to get them out from under ($150,000 in legal fees)

Had me come down with Juvenile Diabetes at ago 40

Had our home burn down

Lent most of our life savings to her daughter only to have her abscond into the Navy and refuse repayment. (yet another lawsuit)

Had our business partner who we entrusted the practice with during her surgical recovery basically screw up our client relationships so badly we are basically rebuilding from scratch.

And now this. I have always been the back office guy but I am getting a baptism by fire, as she is not really up to a full day's work any longer.

She said something so heartbreaking to me the other day:

"I am so sorry. If I had known about this I would have never burdened you with marriage"

My response:

"That is perhaps the stupidest thing I have ever heard you say. Remember that whole In Sickness and in Health thing? Well, I meant it."

The way I figure it we have built up a ridiculous amount of Karma Points. I'd like to cash in please.

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