The Pee is Gone
Got through all of last week's tests, whew! Had a quick run to UW this morning to drop off urine (I know, the glamour of all this is enviable), get a blood draw then back home for a bite to eat and then to Charlotte's class to volunteer. Now I'm home until 3:15, when I go pick the kids up at school...then soccer, make dinner and voila! another Monday under our belt.
Out of all the dozens of tests I've had lately, I know the results only for a few and of those, I don't know exactly how they relate to my Pulmonary Hypertension and/or a Lung Transplant. I have a week to gather all my questions together so I can find out next Monday when we meet with my head guy, Dr. Edelman. For instance, my esophagram test (the one where I drank barium while they took an x-ray of me both standing up and lying down) showed that I have "Esophageal Dysmotility" -- material is getting stuck in my esophagus. If you google that, it's a *thing,* a chronic disorder. But I don't have any symptoms, I don't know if it's a side effect of PH (or, just as probable, a side effect of the meds I take for PH), if it's something that effects my eligibility for a lung transplant or if it's just something the docs need to know about and monitor.
I've been trying also to figure out how to summarize all the information we learned in the Lung Education Transplant Class and it's like writing a thesis paper. I keep gathering more information and writing about the history of transplants, the statistics, the main worries and before long, I have no idea what I'm trying to say and my head hurts. My intention when I first started synthesizing all that info was to not be overly dramatic about the transplant because holy cow, it's a lot to take in. Scot pointed out that he thinks it's impossible to overstate the concerns, the life changes, the EVERYTHING about the lung transplant procedure. So I'm still working on distilling the salient points but right now, I welcome direct questions!
Mammogram tomorrow then straight to Pulmonary Rehabilitation, my twice-weekly monitored exercise class at Evergreen Hospital. I need to do everything I can to get my body prepared for the trauma of a transplant and the loooooong recovery after.
Out of all the dozens of tests I've had lately, I know the results only for a few and of those, I don't know exactly how they relate to my Pulmonary Hypertension and/or a Lung Transplant. I have a week to gather all my questions together so I can find out next Monday when we meet with my head guy, Dr. Edelman. For instance, my esophagram test (the one where I drank barium while they took an x-ray of me both standing up and lying down) showed that I have "Esophageal Dysmotility" -- material is getting stuck in my esophagus. If you google that, it's a *thing,* a chronic disorder. But I don't have any symptoms, I don't know if it's a side effect of PH (or, just as probable, a side effect of the meds I take for PH), if it's something that effects my eligibility for a lung transplant or if it's just something the docs need to know about and monitor.
I've been trying also to figure out how to summarize all the information we learned in the Lung Education Transplant Class and it's like writing a thesis paper. I keep gathering more information and writing about the history of transplants, the statistics, the main worries and before long, I have no idea what I'm trying to say and my head hurts. My intention when I first started synthesizing all that info was to not be overly dramatic about the transplant because holy cow, it's a lot to take in. Scot pointed out that he thinks it's impossible to overstate the concerns, the life changes, the EVERYTHING about the lung transplant procedure. So I'm still working on distilling the salient points but right now, I welcome direct questions!
Mammogram tomorrow then straight to Pulmonary Rehabilitation, my twice-weekly monitored exercise class at Evergreen Hospital. I need to do everything I can to get my body prepared for the trauma of a transplant and the loooooong recovery after.
Comments
I will be following you and keeping you and your family in my thoughts and prayers. I only met you a couple of times but you had a big impact on my sisters family while in Seattle. If there is one thing she truly misses after moving back it is your family. Good luck on your adventure!
I'm amazed at your energy to keep life as normal as possible as you go through this process. Life with active children is not easy in the best of circumstances - so you have my unending admiration! This is a fabulous way for you to process thoughts and feelings - and will probably be a tremendous source of inspiration for many people along the way. Kudos to you girl! So glad to be included from afar so we know what to pray for.
I think of you every day and send positive thoughts your way. (i do have more than one...)
Thanks for taking the time to write about what you are going through. You have more support out here than you realize. Always let us know if you need ANYTHING!
I have an inking of what it is to go through getting ready for a transplant (family member) and it is SO overwhelming. Keep it up. We are ALL rooting for you and the family. I know I'm in Portland, but only 3 hours away.
xoxoxo
Michele