St. Patty's Weekend??

First off, Happy Anniversary to my sister and her husband Tommy, married on St. Patrick's Day 24 years ago! Wow!

I had a pretty good week, Rehab twice, and some regular check-ups with my transplant pulmonologist and my cardiologist.  When I was in the hospital in February, I actually never saw my cardiologist but I did see 5 other cardiologists (remember I spent some time in the cath lab so there were several doctors working on me) that all told me they work for him.  And these guys weren't students or even young doctors, and they all would say....."Hi Lorene, I'm Dr. so and so, I work for Dr. Mathier.  He has told us a bunch about you".  I had no idea Dr. Mathier was the head of one of the cardiology departments (I'm thinking pulmonary hypertension). 

Well my pulmonary pressures are really really high, and his staff were all very concerned and talked to us about putting me on subcutaneous PH medicines or IV meds, etc.  And each one that had this conversation with me I would say, "Well, the last time Dr. Mathier and I met in November, he said the plan was to double my Revatio, not do the aggressive therapies".  As you know, Dr. Mathier did end up doubling my meds.  And when we saw him on Wednesday, he started off the conversation with..."you know Lorene, you are a special case"... He said that his plan is to just keep helping my heart as much as possible until I get the transplant and he didn't want to do any aggressive therapies, because in theory once I have my transplant I won't have any pulmonary hypertension.  Both Steve and I looked at each other and thought...I bet that was the same conversation he had with his staff:)

So, that was cool.  In fact he doesn't plan on seeing me again until after the transplant, unless I start having more issues.  He is very confident I will get my transplant soon and they will immediately take me off PH meds...and there won't be a need for me to see him anymore :)   He also confirmed that the reason I am having swelling in my feet is because they doubled my PH meds; it's a side effect and he wants me to self medicate with the Lasix.

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Thinking about St. Patrick Day shenanigans that are going on all around us and hearing ambulances, and then one of my Transplant friends got listed on Wednesday and already got a phone call this morning to be a back up patient...well, it spurred a bunch of us (who are a part of the UPMC Lung Transplant FB page) to do some research on the OPTN website (organ procurement and transplantation network).  There are 56 of us in this designated region waiting for lungs, 8 of us have a LAS above 50 (I'm at 53.4), only 3 of us in the 56 have Scleroderma, only one of us has been waiting more than 30 days (me). Yikes, and of the 8 people that have the highest scores there are 6 of us who are A+; 4 of us have been listed less than 30 days, 4of us more than 30 days (me).  Not to even mention that UPMC has already done 6 lung transplants in March, and has refused 2 sets of lungs based on their medical criteria.  And I got that false call last Sunday.

This really is an emotional roller coaster.  I'm like "OK this is good" one minute, "it's imminent, it has to happen, let's get it over with".....and then the next minute I'm spazing on the inside....I'm checking my checklists, making sure Steve knows where all the important documents are, and last night I wrote down every password I could think of.  Ugh.  And now as I sit here and have just found out all these STATs, I'm thinking I should go ahead and take another shower (because I want to have a shower as close to surgery as possible since I will be in the hospital so long), and shave my legs....cuz a girl always wants smooth legs :)