Just got out of a 2 week ICU stay where I spent 7 days on a vent - it started out as a 8 mm kidney stone which the ER doc sent me home to pass (my urologist later told me that I will never pass a stone of that size) However, after 3 days at home dealing with the pain, nausea, etc, I ended up in the hospital to have surgery to place a stent around the stone so my totally infected kidney could start to drain the infection.

Unfortunately, all this brought on a major mg crisis. I was in ICU on a bi-pap and the next thing I knew, I woke up with a vent.

While on the vent, I accidently became a guinea pig for all of you who take Cellcept. The nurse accidently gave me 20 doses of liquid Cellcept one evening instead of one and it wasn't caught until the next morning. My neuro and my daughter (who is a nurse) researched everything they could about possible side affects but there really isn't much data oh a Cellcept overdose since it is usually taken in tablet form. As a joke (after the major part of the scare was over), my daughter told me the monkies didn't die that they some overdose testing on, so I guess that was good news,

The major side affect (and i mean major) was diarrhea for about 36 hours, As near as anyone can figure, the OD was like giving me a dose of chemo and I will feel more tired and worn out over the next few weeks.

One good thing is that my daughter and I have been asked to be on the Patient Advisory Board that is being formed to help educate hospital staffers on the more rare diagnosis and my daughter will be holding training classes on mg specifically from a patient and family point of view so hopefully the next time I need the er, I won't get patted on the head and basically told if breathe slower and deeper, I can stop my "panic" attack.


The final irony of all this is that I had retired on disability Friday and ended up in the hospital on Monday. Some start to retirement!

Fortunately, I have great family support both from my brothers and sisters and my own children. It has made things a bit easier and I'm looking forward to spending more time with everyone now that my life will not be totally focused on work.

The best news is that I'm home and feeling a little better each day! You'all have a great holiday from the south!!!

Wow, that is NOT a fun way to start retirement. I've had kidney stones but they were not as big as that one. They really hurt. Can't even describe the pain if you haven't had one. What antibiotic do they have you on? They often go right for Quinolones.

I hope they told you things like drink more water, don't have calcium supplements, etc. Did they say to check with your primary doctor and get a parathyroid panel, plus a metabolic panel to rule out parathyroid problems? Oh, and a followup X-ray to check the kidneys and ureters again?

I'm at least glad you were in the ICU when your MG tanked. How scary to wake up on a vent. And, yeah, Cellcept can cause some major diarrhea. IV drugs are always more potent than oral. Duh, people. The problem in a hospital setting is that there's all this rushing around and sometimes they don't take time to THINK.

That's cool that they are being proactive and are having you and your daughter help. It'll help a lot of other patients.

I hope you will let everyone else do the socializing on Thanksgiving and that you will enjoy the food and company, resting quietly in some comfy chair.

I'm glad you are okay.

Annie

I had been thinking of you and wondering how you were doing. I can't believe what you've been through - I am sure Denise and Stacy were horrified! I am happy to hear, though, that you have retired now. It helped me a lot to begin to stabilize when I went on permanent disability. It's been a year now. After you have had a chance to recover from everything and begin to get stronger, just remember not to do as much as you think you can. This is what I tend to do every time I start feeling better and then I crash again! It's a hard lesson to learn. Please take care of yourself and I hope to see you soon.

All the best,
Sharman

Wow Juanita you are one tough lady!! I think my daughter would love to get some tips from your daughter on how to handle this whole thing.

Annie59