DS complications

Not me. A very dear friend whom I've known for 6 years.  She writes this from the hospital:

I collapsed in incredible pain after thinking I had stomach flu with vomiting and diarrhea for a few days.  I passed out and [a friend] found me and drove me to the ER.  They admitted me for colitis - severe inflammation of the colon.  I've been in now for three days - on the ER blood test: vitamins K, E, D, Zinc, Calcium all undetectable. Potassium critically low and parathyroid through the roof - so after it was explained that I was so close to bleeding out from vitamin K levels, dying from the critical potassium, I get dropped into a bariatric floor and a team of surgeons and docs to figure out how I'm still alive. 

I have an IV pole with the following in regular rotation: added zinc, thiamine, folic, K, E,A,D, three different antibiotics: Levequin, Flagyl, and Cipro,  Robaxin - muscle relaxer, Magnesium sulfate, Solu-Medrol, Protonix, and of course a PCA morphine machine all flowing through a picc line.

 

They are not sure why my body is rejecting food so hard - vomiting, cramping, constant diarrhea - violent muscle spasms. So I'm on clear liquids - and get some nutrition through my IV.  It has taken three days to get my fever down and me startingtoward hydration. 

 

I'm totally scared, I'm gonna be in the hospital for a while, and the docs are discussing emergency revision surgery with me tomorrow morning. Apparently I'm really dying without some serious kind of change.  I'm terrified and a bit lost.

To provide a smidgen of context, this is a woman in her late 30s who lost about 240 pounds with her DS -- and she's had nothing but but problems since about 6 months out.  Her surgery was done by top DS surgeons in the field, so that's not it (although I have to say that their follow-up program leaves something to be desired, even if my friend was not initially proactive about her own care in the first couple of years, either). I'm forced to conclude that she's been one of the unlucky DS patients. Her weight loss has been entirely successful, but she's left with a whole host of complications because of her radical inability to absorb food.

I keep calling her on her cell. No answer.  The line to her room at the hospital is busy. 

(Something weird is going on: I now have three very close friends who are undergoing major health and emotional crises [i.e., each of them is going through crises on both fronts], and it's scary to be able to do nothing material to change that. [I know, I know: just be a good friend and be there for them. I am and I will, but it sure doesn't feel like much.)

Later:  I got through.  My friend sounds exhausted and sick but feisty, which is good. My main concern was that 1) she was on the brink of death (and indeed, she was, but she's stepped back, thanks to the last few days in the hospital); 2) Texas surgeons who are non-DS-knowledgeable would start sawing into her without knowing what the fuck they were doing (fortunately, that doesn't appear to be happening).

Without going into detail, I'll say only that in 4 years, absolutely ALL conventional and unconventional means of addressing my friend's nutritional deficiencies, short of a revision, have been tried. In fact, she may need a revision for nutritional purposes -- but in that case, she knows she needs to go the route not only of an in-depth assessment by a reputable DS surgeon but also one who has a lot of experience in doing revisions, as they're tricky to begin with and her innards and general health are, at this point, convoluted and complex.  To put it mildly.

I want her to wrap up her graduate program in Texas ASAP (she's due to finish in the next couple of months) and get her ass back to California where there are a range of DS  experts to consult -- including Dr. Keshishian, who happens to be my surgeon and an expert in performing revisions as well.

Comments

[*S*]

Good to know that Dr. K is in the house, when it comes to revisions. I have still been having problems with my stomach and was worried that there was some kind of obstruction. My bloods are fine though and I had an ultrasound this am.

*S*

[Bronwen]

Wow! Sounds horrific. If Florida is any closer - or if she has any family in the area - Gagner is now in Miami Beach and is very skilled in revisions.

I'm fervently hoping for the best for your friend.

[Deluzy]

Thanks so much, Bronwen. Despite a certain lack of compliance in the first couple of years, she's been followed very carefully more recently, and the TX doctors don't know what's going on. Her SF surgeons aren't being responsive (an ongoing problem), so this is tough.

She's healed enough in the past few days to be scoped, and there are no bowel obstructions or adhesions going on. Today a slow series of barium x-rays are scheduled ...

Frightmare.