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Posted By : rocckyd - 5/30/2017 2:39 PM
It's been a crazy few weeks, running back and forth from my local hospital, Duke, and Wake Forest.
Thank goodness I haven't driven to the wrong hospital.

As you guys know from previous posts, I've had tons of problems with my esophagus and gi tract. I'm unable to swallow with any regularity, and can't hiccup, burp, or vomit. Not a ton of fun sad

So, after way to many tests and manometry studies(small tube inserted through nose down to stomach, where muscle coordination is studied while swallowing saline), I've been diagnosed with a subtype of achalasia III. You guys are totally think I'm making this up, but this subtype is found in about 30,000 folks in the US. Really, Truly, that is what the posse of Drs have stated. Not joking or lying-crazy, right?

I go down to Wake on the 1st for a couple more studies, and then to meet with anesthesia since I have some issues that affect surgeries. Then on the 8th I'll have surgery down there as well. The muscles of the lower esophagus are cut and separated, and then the upper stomach is brought up to attach to the area. The surgery will be complicated due to multiple previous surgeries in that area, open g/j procedure and a nissen fundoplication, and then a partial letdown, and other surgeries as well.

Lots of stuff coming up, and lots of stuff I have no control over. I hate not having control.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

Post Edited (rocckyd) : 6/9/2017 12:48:50 AM (GMT-6)


Posted By : skeye - 5/30/2017 5:23 PM
I'm sorry to hear what you are going through, Rocky! As if you didn't have enough to deal with already! That stinks. :-( Good luck with the rest of your studies and your surgery! I hope everything goes well and they are able to help you!

Skeye

Posted By : White Beard - 5/30/2017 11:27 PM
rocky I wish you all the best! You've been through so Much! May God's Peace be always with You! Good Luck with those tests and your up coming surgery!

White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

Posted By : pitmom - 5/31/2017 5:07 AM
((((((rocckyd))))))
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Posted By : Sunny13 - 6/4/2017 9:33 AM
Medical stuff sucks!!!!

I'm so sorry you have to deal with so much junk! I wish I could take some of it away.

They say that God never gives us more than we can handle....you are such an amazingly strong woman Becky...keep hanging on. Your little man needs his mom just as you need your little man.

You will get thru this.

Sending love and hugs and positive vibes your way....

Posted By : rocckyd - 6/4/2017 10:45 PM
Thanks allsmile

I don't of myself strong in any way, I just feel like I'm trapped on some crazy ride that just keeps going up and down, and round and round.

Finished up the last studies needed for the 8th.

The barium study ended up taking much longer than they expected. There was what looked like to be some sort of obstruction which channelled the barium into one thin trickle down my throat. They moved me every sort of way imaginable-I offered to stand on my head for entertainment in exchange for covering my copay smile Turns out that it was a HUGE pocket of air, which makes sense since I can't burp or hiccup. After it was identified, I got sympathy hugs from the nurses. Explaining the pressure and the spasms, and how they are so incredibly painful, has been a bit difficult. The barium highlighting the gas pocket allowed them to finally understand when I say it's like there's a softball in my throat.
The J part of the feeding tube is for a slow infusion of formula, and the G portion is to allow my stomach to vent. I know it's icky, but if I need to throw up, which happens quite a bit, opening the tube allows the pressure and lovely contents to come out. Unfortunately, the trapped air/gas in my throat sits there until it's somehow resolved.

Monthly Cytoxan infusions are on hold since it knocks out my immune system. I really need to get them restated as soon as possible. I'm typing this in a dark room with the screen on super-duper almost blind mode. I have uveitis in both eyes, basically means that there are white blood cells where they shouldn't be, and light is killing me. I've been wearing sunglasses in the house, which obviously makes me look like a cool hip parent. The joints are super uncomfortable, but the steroid increase is helping there. Right now, it's my bones that hurt the most. It's like something is trying to explode my bones from the insides. Just crazy crazy dull pain and pressure.

I know there is no quick fix, shoot, sometimes there is no fix, but I'd love to have even one area of my body in slightly less pain.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

Posted By : Sunny13 - 6/7/2017 8:04 AM
Does your nose hurt??

I used to always say that "at least my nose doesn't hurt", when everything else was going wrong/hurting. Made me laugh a little.

I'm sorry you are in so much pain. And yes, the sunglasses definitely make you look like a supercool hip mom!

Hoping there's something they can do to get you feeling more comfortable!


Gentle Hugs,

Sunny
There's always HOPE.

Many challenges & lot to be thankful for.

Spina Bifida dx age 20; chronic back pain (tethered cord release, CSF leak), spinal cord re-tethered
neurogenic bladder (augment, urostomy, sling)
neurogenic bowel (colostomy)
chronic migraine, TMD
bulging discs etc. C3-C6
bipolar 2, anxiety
fibromyalgia
chronic nausea
total hysterectomy/surgical menopause @37

& more.

I'll be ok.

Posted By : rocckyd - 6/9/2017 12:47 AM
As I had recently posted, surgery was supposed to be a fairly simple where the muscles at the base of my esophagus were to be cut and widened so that I'd be able to swallow regularly. And I'd finally be able to hiccup, burp, and vomit. You don't realize how much you love that, until you are unable to do so sad

Well, in true Becky fashion, I had to make it so much more complicated. I won't know why until rounds in the morning, but apparently my surgeon decided that my spleen deserved to see the rest of the world. The post up notes are not yet in my chart and the surgeon who's on call overnight has no idea.

My spleen and I had developed quite an attachment over the years, she'll be greatly missed.

Pain's been hard to control, they're trying. Like many of us, I have the tolerance of a water buffalo.

Not sure about the hospital stay. Nate's last day of school is Wednesday, and I wasn't worried about it.
We go to the pool and meet up with friends. The club is open until 10, and the boys love swimming in the lighted pool.

Always an adventure in my world.

And, of course, nowhere near home
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

Posted By : rocckyd - 6/10/2017 8:01 AM
Rough night again last night. I have an NG tube draining out my stomach and there's still quite a bit of blood, but I also have a newly placed NJ tube which we began using for feeds last night
The phrase for today is pain control. Spent much of last night with pulse in the 130-140s. I'm trying to walk the halls, but it's bumping up to the 160s. Three "make way for ducklings" teams came by, Dr with his medical students

A whole lotta ouch sad
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

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