Worst summer ever into brand new life (long)

[Broove 22]

Hi all,

I've been lurking for some months, and want to share how I came to my decision to have VSG surgery. My life the last few months has been pretty awful, but it did make my decision to get VSG a no brainer.

April 26th of this year, three days after my 35th birth day, I was the sickest I have ever been. It had been going on for about a week and I just thought I had food poisoning. I was nauseous, vomiting, and had really bad headaches. I was so sick that I decided to skip crossfit that week. I had recently started again, and I LOVE it. I decided to tough it out, and went into work. Later on in the day, I was just finishing up with a meeting in my manager's office when I noticed a REALLY strong ammonia smell. It was like someone had opened a bottle right in front of me.

I leave the meeting in my manager's office, take a deep breath, and lo and behold I'm the source of ammonia. I'm a scientist, so I immediately knew it was my kidneys. I rushed home to let my dogs out, and drove myself to the hospital. I didn't really know what to think about how long I'd be there, but I told my mom who flew in the next morning to make sure I was ok.

I'll save a lot of the drama (there was a lot). Funny story, they admitted me into the ICU and assured me I WAS NOT dying. I was. My BP at one point was 227/160, so I'm very lucky I didn't have a stroke. I still can't believe they tried to assure me I wasn't dying. I guess they were being nice. After days of trying to figure out why I went from perfectly healthy (other than being a professional fat girl) to nearly in the ground, they diagnosed me with an ultrarare autoimmune disorder called atypical hemolytic uremic syndrome. I had never heard of this. My mom had never heard of this, and I had to be moved to a different hospital for them to treat me accordingly. Atypical HUS is a disorder that can attack any major organ system, but its favorite target are the kidneys. Before 2011, the treatment was very unsafe plasma exchanges. Now there's a new drug that shows a lot of promise.

So I lost my kidneys this summer. I have been on dialysis since May. I won't go into all the psychological stuff that accompanies being on dialysis or having kidney failure, but I no longer have to go in center. That is a blessing. I am able to do it at home.

So I was 35. Always fat. Still healthy and active, and then this happens. Now I'm faced with the possibility that one day I'll need a kidney. Well, my BMI disqualifies me from being listed for a transplant. I had a friend come to visit me earlier this summer and she was having the sleeve, and trying to convince me to do it. I'm stubborn. I've always wanted to do everything on my own and have done everything on my own, so I resisted when she said I should get it. My plan was to start crossfit again and just do that. Well even doing crossfit 3x a week, I don't lose a ton of weight, I easily put on muscle though and saw my body contours change. I'm already one of the stronger females in my gym. But once this happened, and I wanted to get my life back, I decided that the best insurance would be for me to get the sleeve. My nephrologists are all supportive and very behind me.

So I just wanted to share what happened. I have stories about being in the hospital for nearly a month. Once nurse was convinced I was there with malignant hypertension (she didn't read my chart and I have never had high BP before this) and therefore a diabetic, and tried to give me insulin. This was my first night out of the ICU and I was on a lot of pain killers, and I still managed to set her straight. So don't let people tell you fat shaming in health care doesn't exist. She was the exception, and my doctors never brought up my weight except in the context of a transplant which I thought was fair game. They've all been really really great.

I might be off dialysis soon, things are looking up and my kidneys seem to be recovering in their own time. I have a lot of emotions about what's left to come this year, but I'm excited. I may never need a new kidney, but I think I made the right choice in deciding to have the surgery. I'll post more as December approaches. This is a great forum with great people, and I'm glad I'm apart of this community now.

-Broove

[Christinamo7 4,041]

I am looking forward to seeing your progress as you go through surgery and into hopefully a healthier 2017!

during my pre-op stage through a very high WBC discovered I had either a rare auto immune disorder (sclerosing mesenteritis) or a low grade cancer in the lymph nodes of my abdomen. they now think it is the cancer. I had to go through a lot of testing before the surgeon felt I was a safe surgery risk. Wishing you a more expeditious process - but know that no matter, it is worth it all. this has given me such a better quality of life and far greater odds of survival as the years go on when it is time to treat the probable lymphoma.

[theantichick 2,204]

There's a lot of us here with auto-immune. I have psoriatic arthritis. Nothing as dramatic as your situation, but it caused me to have to shift career trajectories and consider that while getting the weight off won't cure my PsA it should help with overall inflammation and hopefully help the drugs work better.

Best of luck to you, and congrats on getting through this! I'm a former ICU and ER nurse, and this sounds ridiculously frightening. Most kidney failure patients, it comes on slowly. I'd freak if mine just stopped working one day. Shudder.

Anyway, welcome!!

[blizair09 3,250]

What a story! Welcome and I wish you great success as you begin your weight loss journey.