Dehydration Decisions & Hurricane Sandy - Oct 29, 2012

So I have been feeling exhausted all week. It's kind of discouraging, but I am trying to be patient. I had an appointment with the Transplant Clinic today, and with Hurricane  Sandy coming in and everything being closed, I believed I wouldn't be expected to come. However, because I wasn't doing great last week, they told me I needed to go in. 

The drive in was rough, not a lot of cars on the road, but visibility was limited. As the rain got stronger, I really started to have doubts that this one-and-a-half-hour trip(well, at least 2 hours in this weather) was a good idea. Eventually, we made it safely and waited the routine hour and a half past my appointment time to be seen. Each minute that passed was a little more stressful, being unsure of the conditions outside. 

When my nurse finally called me in, of course I got dizzy as I stood up. She was not impressed. We talked about eating, drinking, and urinating. Input and output numbers. Both of mine are improved since last visit, but I am still overwhelmingly exhausted and visibly dehydrated according to both doctors. They evaluated my blood pressure history and it's been consistently too low. This should feel like great news as I have suffered from chronic high blood pressure for more than ten years. Since transplant, I don't take blood pressure meds anymore. But too low blood pressure causes dizziness and fainting and is just generally not fun. 

Dr Jackson tells me my Hemoglobin and Hematocrit are still low 8.8 / 29.4. My albumin is low. My red blood cell count is low. I'm confused as everyone has always said my labs looked great. Now I understand...they are steadily improving and great for a person with a recent kidney pancreas transplant who feels exhausted all the time, not great for a healthy person.... Dr Wali wants me to stay and get hydrated via IV. And get a dose of Epo while in the hospital "It should only take 2 hours," he suggests. But this is doctor time, not real people time. 2 hours doctor time typically translates into 4 hours real people time. In 4 hours, I will be stuck at the hospital indefinitely because the storm with be in full swing. 

Dr Jackson, my nurse Linda and I point out reasons for me to go home now.  

• "Her numbers are the best they've ever been." 

• "She's been eating much more, yesterday was her best day of eating." 

• "If I stay now, I'll be stuck here for at least a day." 

Dr Wali eventually compromises by sending me home today, with a shot of Epo right now, a prescription for magnesium, and a prescription for a salt-inducing hormone as my body is clearly not retaining the water I drink. He tells me to get to a lab immediately once the roads are safe post storm and we'll decide based on those results if I need to get IV treatment or not. 

My nurse loads me up on apple juice and waters before I go and we get on the road ASAP. She calls in the prescriptions to speed up our trip, but when we get to the pharmacy they are not ready yet. I take advantage and get some Arby's(lots of salt couldn't hurt). The roads were getting worse and it took a long time, but we eventually made it home safely. I am grateful. 

It's a few hours later now, and our power is out. I'm getting cold. Everyone else is setting up the basement where we can sleep without fear of wind and windows (or flooding-it's a walk out). I've been drinking, but I still feel dehydrated. Sleeping on a cold basement floor can not be any more comfortable than sleeping in my own bed, where i already spend restless and uncomfortable nights. Starting to wonder if leaving the hospital was the best choice. We'll see how tonight goes.