Posted 9/14/2015 3:44 AM (GMT 0)
Inpatient again, but this time it's planned.
I'm on the neuro unit being monitored for seizures. Discharge will be Friday, unless my brain puts on a good enough performance to get an earlier discharge. I cannot believe that there could be yet another possible area affected. There is not a single system in my body that is not under some type of attack.
As you guys know, I've had the gi and swallowing issues for a while. The swallowing became progressively worse a year after the Nissen(needed to correct aspiration pneumonia). Last admission resulted in a Gtube after a now 70lb weight loss. Unfortunately, I've not been able to handle the tube feeds. The goal is 80ml/hr and I'm right around 30. Any more and I end up with incredible nausea-shaking, sweats, retching. Plus crazy crazy pain. The retching causes the muscles around the jaw replacement to lock down which sends me to the ER for muscle relaxers.
Since I've been struggling with the tube feeds, I've been doing my best to try and get stuff down orally. I keep trying-like it's a mind or matter issue, but it's physical. I had a test done last week where a probe was put down my nose into my upper stomach to measure muscle activity when I swallow. I failed that test with flying colors. The test result has created uncertainty with Gi/surgery as to the next step. I saw the surgeon on Thurs and he told me that the group has many ideas, but no two a like. I have 3 appointments down at Duke the last week of Sept. My surgeon sent an email to the Duke gi, which he cc'd to me, explaining the last few years under his care, the latest test results, and the ideas/suggestions from my team up here. The issue is that there is a physical problem with my Gi tract, but is it caused by an autoimmune disease, or something that can be surgically fixed. If surgery does help, will it be a short term fix, since there is a bigger problem controlling the situation? Sorry if I'm talking in circles-It's kinda like which came first, the chicken or the egg?
The swallow test did not provide good news. As you know, I'm a goodie bag of autoimmune disorders. The gi who did the swallow test feels that I have developed scleroderma:
Systemic scleroderma (systemic sclerosis) The changes occurring in systemic scleroderma may affect the connective tissue in many parts of the body. Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently.
My cardiac, gi, and lung complications also fit into the sclero box. This diagnosis scares me. Like any disease, there are mild and severe forms. Of course, you guys know which form I'll end up with. I know the mortality rate, I know the issues that will arise. Thankfully, I won't need to search out a new med group. Apparently systemic scleroderma is fairly rare, so traveling for knowledgeable care is pretty common. I'll do the 3hr drive down to Duke, and my Drs here will follow their treatment plan. My surgeon is waiting to hear what the Durham crew has to say, and if he's not confident in his ability, he'll say so. I totally trust him-he's held off before where other Drs have said go ahead. He knows me (inside and out :) and treats me like a person, not another case. Since most of us are surgical veterans, you know how unusual that can be. He is also very concerned about my nutritional status. The Gtube feeds directly into my stomach. It's not functioning which is adding to the pain and nausea. Next week I'll have a procedure where the Gtube is converted to a GJtube. The G portion will still feed into my stomach, and the J will feed into my small intestine. This will allow me to open the G to vent my stomach and relieve the nausea. Since I can't physically throw up, this is the only way to get relief. This should be a pretty easy procedure and home the same day.
I saw my pain doc on Wed. He was disappointed to read the results of the swallow study. He had been hoping that the swallow issue was stemming from the TMJ replacements. He did a couple of trigger point injections, and we are going to leave the rest of the meds about the same. Yes I still hurt and move like a turtle, but the next couple of months will hold painful surgeries and procedures.
How do guys balance pain relief now, with pain relief that will be needed in the future? Especially if you have something that is degenerative? Obviously I have hope that something will slow down this train wreck, but right now there is nothing on the horizon.
Oh-and one of the Duke dudes has brought up the idea of mapping my genes. The old science teacher in me is totally geeked up about this idea-pretty cool.
OK-got to find a positive somewhere. Little man loved his first week in middle school. While he likes his classes, lunch appears to be the best part of the day :)
Again it's a novel.
Guys-I know it's just another diagnosis, and by now I'm pretty much a collector of them, but it really scares me. I just keep fighting and fighting, but I just can't seem to win even a small battle.
I'm so grateful for this board and thankful for members that allow me to ramble on and on about a subject few understand.