Professional Patient:( Dr update-I know you are excited :)

Praying this gives the necessary information and that you finally get some relief!

He definitely does use both those traits in his practice. He understands that I'm very frustrated and want this fixed, like yesterday, and he wishes he had the magic bullet(someone HAS to have it). I had the GES and was out by 4:00, and he called me at 5, saying "I know how hard it is to wait for results". It was kinda a mixed bag of results and the appointment on the 23rd will put a solid plan into place. He wants to have a pow wow with my general surgeon, and with some of the Duke team. His hope is to surgically alter as little as possible, and hope that the Cytoxan/Rituxan combo kicks in. Of course, to get to the meds, I have to have healed from the surgery.

Round and round and round we go…

Pain Doc wants to see me the day after discharge-He'll work me in. 9/10 times he agrees with the discharge scripts, but sometimes he tweaks them a bit.

Tomorrow is the CT, which is actually for the jaw. Every few years, bones grow up the tendons and need removed. Last time I was told they looked like chess pieces.

Rockyd: Gentle prayer extended your ways that your medical team can craft a plan that provides you improved GI motility and lessened reflux.

Did you continue with Palliative Care? I ask, as I receive Palliative Care and find it helpful in processing the dual mental and physical challenges of living one's best life with serious, life-threatening chronic illness. Making the best of a less than optimal situation.

I was meeting with my RN from Palliative Care yesterday afternoon. The discussion between us was how does one know/decide to change the medical trajectory from "fixing" to "care and comfort." For me, the answer is when I can no longer adjust and adapt to continued health speed bumps; when the good days outnumber the less than good days. I am at this inflection point, of sorts, and have a specific health care directive in place. No intensive medical intervention.

Cherish the good days. Look for the (sometimes albeit small) rainbow in each day.

I hope for you easing of your many health situations.
- Karen -

There's a lot of reason for hope. It sounds like you have some momentum and are well beyond the mantra of putting one foot in front of the other. Just keep going. I wish you the best of luck and least cutting and complications. Celebrate the small victories. . .it sounds like you have a good medical team if nothing else. I'm sorry to sound like a cliche robot. My words are bad right now. Just keep going.

I do go back and forth into palliative care. It is such a helpful service, but the definition of it can vary from hospital to hospital. Where I am seen, it is very different than hospice care.

I posted this on one of my FB groups, so I'm sorry it there is any repetition. My finger joints have decided to go on strike
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I hope you are ready to enjoy this holiday season.
As usual, things have been very busy in my medical world. After a number of tests, my surgeon has scheduled surgery for Feb 1st. The plan is to loosen the Nissen wrap, but not totally reverse it. Hopefully this will allow me to swallow, and eventually lose the g/j tube. This is a big goal not only because it'd be great to finally eat, but I've also had many procedures to correct tube placement. My pulmonolgist is adamant that the wrap remain in some form. Without, he's concerned that I'll return to aspirating reflux in my sleep and end up inpatient with repeated bouts of pneumonia. Since I was living in the hospital, I began contracting more and more drug resistant forms. Each time I have to have a bronch since I can't cough strongly due to the jaw replacement. I also end up being transferred down to Duke.

Surgeon has no idea how long I'll be inpatient due to all my fun "issues". He talked to my general surgeon and knows that my body goes haywire afterwards. He also told me that I will remain inpatient until my pain is under control. I really really hope that this will be the case. Many of you guys have stories where this is promised, and then end up being under treated. Right now he is saying all the right words, and has talked to my pain doc. He mentioned that he knows my tolerance will be higher than other patients, so I'm super hopeful that this is a good sigh.

If this procedure does not provide the results we are hoping for, then a gastric bypass would be the next step. Surgeon is hopeful that once I begin taking full strength meds again, a bypass may not be necessary. The big concern is that the bypass will create absorption issues, and I take too many necessary meds. If the bypass is done, I was told that I should be able to swallow food again, but I would need a J tube(which empties into the bowel beneath the stomach), for meds. Obviously I would much rather try and loosen the Nissen and hope for improvement. I hate the g/j tube that I have right now. Fingers are not able to cross, but I'm crossing them in my mind.

Right now my meds are being held due to the surgery. The plan is to do cycles of Cytoxan and Rituxan together, a day apart. I think this will be every 6 weeks. These two together, unfortunately, will cause hair loss again. My blood counts will also drop quite a bit, so I'll have frequent blood work. A fever will result in a direct admission. If blood counts do bottom out, I'll be stuck in the house, or I get to wear a lovely face mask when out in public. Obviously, I'm not very keen about this idea, but it is what it is.

My neuro doc has increased my seizure med. Right now my eyes are a mess. I see double, and when reading, the words move around where one seems to be in front of another. My eye doc says my eyes are working way to hard to try and resolve what is in front of me. I've gone through 2 sets of specialized lenses with little to no success. This is related to the neuro mess which is related to the autoimmune disaster. I no longer drive at night because the lights move back and forth, and one in front of another. Kinda like a weird light show, or if you had to much "fun" in college.

Had a CT of the jaw earlier this week. Once again, bone is growing up the tendon on each side. Last time I had 4in removed bilaterally, and I'm not looking forward to yet another surgery. The gi surgery takes precedence, but the jaw will be soon to follow.

My pain doc wants to see me, and will fit me in, when I'm discharged if I'm up to it. Otherwise, he wants me to come in when I feel that I'm able too. This has always been my post-surgery tradition so he can check me out and see how I'm doing. I'm not having the surgery done at his hospital, so he can't check in at the end of the day. Unfortunately, his hospital does not use the same medical program as the Duke crew. The larger hospital (which I really should switch all my care too) uses the same program as Duke, and is actually a much higher rated facility. So, that is where I will go. I'm seen by their pain service while inpatient, which is completely fine with him. I've been seeing him for over ten years, so I don't want to switch practices and lose him.

So that's some of what's going on. Like many of you, I am overwhelmed, but I have faith it will all work out in the end. I mean, really it has too. There is no other choice.

Thanks for sharing in all your holiday fun!

If you remember I too, have a Nissen. It has been a complete success for me in terms of "curing" my reflux. I no longer belch up mouthfuls of undigested food and suck it into my lungs, YAY! I also have ILD so am aware of the extra fun associated lung issues. Don't you just LOVE steroids? Are you getting a Nissen "adjustment". What does this entail? A dilation?

Good luck.