Off topic- Good news!

I have mentioned a few times recently that my sister was in critical condition in the hospital in Iowa City. A few peolle have e-mailed me with concern & I wanted to share the good news finally. My sister, Jeanne is back in Waterloo, at Covenant's rehab. I visited with her yesterday between PT appointments. She so happy to be closer to home. She lives between Cedar Falls & New Hartford & Covenant is in the south side of Waterloo so it's only about a half hour compared to over 2. She was all smiles, sitting in the rehab lunchroom, dressed in regular clothes. Her dexterity is back in her hands although they are numb & tingly and the doctors suspect that might be a permanent result of this disease. She cut her food & fed herself with no problem, even opening the plastic packages of ketchup with no help. That's an accomplishment considering that just 2 weeks ago she needed two hands to hold a pen & then it was hard to read what she wrote. She's in a wheel chair for now. Walking will come with therapy & the return of her strength. She lost 20 lbs during the last 2 months while she was hospitalized in IA City & part of that was muscle. She was trying to lose weight but does not recommend this as the way to do it. Right now most food tastes funny but she is getting her appetite back. She even told me that she wanted me to bring in some sweet corn as she can use the microwave to reheat it and she instructed Larry to bring in tomatoes from their garden. She is now happy to see people other than her kids, husband, & siblings and welcomes her friends. Today her two youngest grandchildren are arriving from their home in western Iowa & she is very excited to see them. It isn't all good news though. Just before leaving IA City, her allergist told her that it isn't a case of IF she gets this back but WHEN she gets it back. It's pretty much guaranteed that it will occur again. From the studies I read, I was aware of this. It's common to have this happen several times & usually an episode eventually takes the patient's life. What I didn't realize, & certainly what distresses Jeanne & the rest of us is that there is a 50% chance that it will be just as bad as this episode. I assumed that if they recognized the first signs & started treating her, & since she is now on 2 drugs to prevent it, they would be able to stave off a full blown episode but apparently that isn't the case. We'll just have to pray that she is lucky & that doesn't happen to her. Once more, Thank you all for your prayers & kind words of encouragement. It's so nice having my sister back! Dixie

Glad that she is moved and getting better day by day. I will continue to say prayers for her and family that it gets better everyday for her. Deanne

I'm so glad she is better! It must be somewhat of a relief having her closer and seeing her regain some of her strength. I'm too lazy to go back and look but what happened with her and what is it that can happen again? I guess I haven't been keeping up very well. How is your job situation? Any end date in sight?

Hi Lyn, My posts were in response other posts, such as "Whht are you doing this weekend?" so I don't expect you to remember. Here's what happened to her. Sorry it's so long. Jeanne went to IA City for tests on June 9. She had been in pain for a few weeks with hands & knees & eventually everything swelled up horribly. The doctors in Waterloo had no idea what was wrong with her & finally sent her to IA City, fortunately for her. If they hadn't she would have died. It took awhile but finally they diagnosed her with Capillary Leak Syndrome, a very rare disease that they had never seen at that hospital & Mayo has only had a few cases over the years. They know only of 61 reported cases ever. I suspect there were more but the patient died before they were diagnosed & they just attributed the death to kidney failure or congestive heart disease. Jeanne's capillaries allowed the fluid to leak out into the tissues, causing a drastic drop in blood pressure & kidney failure. They had to pour the fluids back into her to keep the blood pressure up & it just kept leakingout into the tissues. At one point she had gained over 80 lbs, all fluid. She was very critical for several weeks. I spent each weekend there & each time I wondered if I'd be returning the next or if we'd get a call that she was gone. Her care was great. The doctors were wonderful but the nurses were even better. I believe that they saved her life more than once. They are treating her per a report they found on the internet by doctors at Mayo. There's a few more out there. I know of one from France & one from Scotland, I believe. That's all they had to work with. We were told that she would get worse before she got better & boy were they right. When the drugs finally started working the fluid flooded back into the capillaries & her lungs filled up. She was put on a ventilator & eventually had a trach. She still has it but it will be coming out soon. There are 2 drugs she will need to be on for the rest of her life but apparently they won't prevent a reoccurance. She in in rehab because the swelling damaged the nerves in her hands & she can not walk. The walking will come back as she gets stronger & with PT. I suspect she will never totally get back to the way she was but if she is happy, that's good enough. We don't know yet if she'll be able to return to work or will have to retire a few years earlier than planned. She is a librarian at the Waterloo Public Library & her husband retired from Deeres a couple years ago. Jeanne is almost 60. I'm just thrilled that she is recovering & getting back to normal. I am lucky as we have always had a wonderful relationship. She has been there for me through all my surgeries & has been my biggest supporter. I don't know what I'd do without her. Please keep her in your prayers. I know this will probably eventually take her life but if we are fortunate, it will not be for a long time. Oh, Jeanne has battled her weight for several years now, never anything terrible but was overweight. She told me that she lost 20 lbs through all this & is glad to have it gone but doesn't recommend it as a way of losing. Me, on the other hand, gained weight through this. I eat when I get nervous & it seemed that I ate constantly while at the hospital & during the drive to & from Iowa City. Now I'm struggling to get those 4-5 lbs back off. I was proud that I hadn't gained any weight back but this really took it's tole on me. Now as far as my job goes, it is starting to look like there is progress. They are starting to automate much of what I do so hopefully they will be telling me soon when I am leaving. They are insisting on giving us 60 days notice. On next Thursday it will be 60 days until I start school. I plan to write an e-mail to my manager tonight to point that out to him. He promised me in July when I had to postpone starting school that I would be able to start in October. He better not disappoint me again. I will be a very unhappy employee & I assure you that my work will reflect it. I do have some vacation time saved up so in a pinch could use that. Dixie