11 lbs of water

My doc was right. I DID have 10-15 lbs of water in my belly. Think about that, people... I have been carrying around 11 lbs of water weight around my vital organs for YEARS. I now weigh 110 lbs. Yup, I'm a skeleton. My belly is finally soft and squishy and I can push on it without wincing. I mentioned my "water baby" every time I went to clinic for YEARS... and no one noticed? Sigh... which means he's probably right about the transplant too. Poop.

I have managed to keep the 11 lbs off all week, so I am really happy about that!

I'm glad this week is finally almost over. It's been interesting. As my Dad told me: "illegitimi non carborundum"or Don't let the bastards grind you down. Thanks, Dad :-)

Jeff has started his package for reassignment since he won't be able to deploy this fall. There is a LOT of stuff involved and we are trying to get it all together. I know that both of us feel like we'll never catch up with the amount of stuff we should get done before I get the call. It would be great if everyone is very, very safe this weekend!

We have the electrician coming tomorrow. Our garage is an electrical nightmare and I am 100% positive that my parents don't want to get on their hands and knees to access the cabinet under the sink so they can unplug the garbage disposal to run the dishwasher when they come to help Jeff (and me!). Shoot, I don't get on my hands and knees! So we'll get that fixed too.

I have still been increasing my Remodulin. I had to switch to every other week instead of every week because the side effects were making me absolutely miserable. But this week was an increase week. So I've been a bit achy and have had horrible jaw pain the past few days. Ugh. I won't be sad to lose some of these side effects!

We met another neighbor this week too. I am so glad that we are slowly meeting everyone. It kinda stinks that we moved in and now I need a transplant and we haven't been able to meet everyone. It's a little awkward to go door to door and say "Hi! We're your neighbors and I need a lung transplant. Wanna help?":-P Okay, totally awkward! But every person we've met is super happy that we are quiet (the previous owner had yippy dogs). And no, we didn't mention that I need a lung tx... I LOVE our neighborhood and our street. I am so glad we picked this little house. I could not be happier.

I was able to connect yesterday to another long-term PH patient here in San Diego! He was dx in 1990 and just had a double lung transplant in April at UCSD. I talked to him for 2.5 hours! (see, Bee? Some other people talk as much as you do :-D ) I also talked to his amazing wife. The amount of positive energy just flowing out of them (through the phone!!) was absolutely infectious. It raised my spirits so much. To be able to talk to someone who had my disease and who is seeing my doctors (well, our doctors) was really nice. He is doing great after transplant and says that every single time he wakes up from a nap he can do a little more and has healed a little more. I think their journey is also helping mentally prepare Jeff for this.

I have another long-term PH survivor friend, Donna. She also exudes positive energy. I told her that I feel like long-term survivors hold the baton out in front of people like me like a carrot... I gotta keep walking to the carrot... I can't give up!

I am very blessed to have such amazing friends and family. I really appreciate you all. Thank you for all of the support thus far!

I had to add this pic from the FB Transplant Group. The butterfly is the symbol for lung transplant.