Lee and I had our first "clinic" appointment. It was scheduled for 8:00 a.m. with Dr. Zaas. I think I mentioned that he's my pulmonary doc and the head of the transplant team.
We showed up at 7:50 and they called us right at 8:00. Yea! Yea! Yea! I only need to loose three more pounds! That's so exciting. My blood pressure was great and my O2 level was 99 (why in the world would I need a transplant with numbers like I had???)
The nurse gave me three pieces of paper and put Lee and I in a room (just as small as CA) and we were set to wait the "normal" 45 min - 1 hour but Khara - the other pre-transplant coordinator came into the room within ten minutes. She - like Lauren - are both RNs that specialize in lung transplants. They both are members of the transplant team and coordinate everything medical for the pre-transplant patients. It's sort of like having your own concierge at the hospital and clinic :-). Khara has just come back from maternity leave (she has a cute little baby girl named Kyneddy) and this is the first time Lee and I have met her. I asked if she was going to be my new coordinator and the great answer for me is no. I will have both Lauren and Khara - at least for a few months until Khara is back on board. Two for the price of one and just that much easier to get a hold of!
Anyway back to the appt...Khara asked a couple of medical questions and started reading my electronic chart. I asked if I could just have the Right Heart Cath tomorrow instead of both the Left and Right sides - it makes a huge difference in the procedure (Left requires an artery and Right only just requires a vein). Khara agreed that because I'd had a Left and Right done in October of last year then the Right is probably all I'd need. She'd ask Dr. Zaas. Other than that she was happy with my progress in Rehab and she left.
Next came Dr. Zaas. He is so nice. First question about our move - how did it go, etc. Then he asked how I like the Rehab program. As you probably have figured out by now, I am really impressed with the program. Dr. Zaas was glad to hear it and he told us that a couple of weeks ago he as visiting another transplant program that asked him why Duke's numbers were so high (survival rate). He said he directly attributes it to their Pulmonary Rehab program - both before and after transplant. Good to know. He liked the weight loss and asked me to continue losing weight if I can...again there's a direct correlation between optimal weight and survival rate. When put that way how do you argue with continued dieting?
We discussed the heart cath and I do have to have both the Left and Right side done. He said he wants Duke to do the procedure because a few months ago they transplanted a man and a couple of weeks later he dropped dead from a heart attack. It had nothing to do with the transplant and they had no clue that he had significant heart issues that should show up on a heart cath. That said, I'll have both sides done. Dr. Zaas said if they do find heart problems they are VERY aggressive towards fixing them and it will not rule out a lung transplant - it will just require more work before the transplant.
We talked about the esophageal wrap surgery that I will probably have to have. It keeps acid in your stomach and doesn't let it go back up into the esophagus to ruin a new set of lungs. They do that surgery two to three weeks after the transplant.
After all the not fun discussions took place Dr. Zaas leaned back in his chair and said "why don't we try and move your PET Scan to next week so we can list you next Friday". Good thing I was sitting down because I was really surprised. He probably knew that because the first words out of my mouth were "Are you sure?" He was sure.
Then we talked about those nasty little anti-bodies that I have in my blood. You know...the ones that would attack 90 percent of the donor lungs I'd receive. He doesn't want to to the cleansing process (where they take out all the anti-bodies) because there is a stronger chance of infection. It's pretty much dialysis. I'm going to have a series of IV medications given over the next 4-5 weeks. They will kill off the anti-bodies. Meanwhile they try to match me up with a donor that doesn't have all those anti-bodies. He said that most people with anti-bodies get their transplant before they ever finish their IV treatments.
So now I'm really excited and really scared! Every time I think I've seen the reality of this situation something comes along to make it more real! End of next week....WOW! That means we will have to be available 24-7 and could get the call at any time. WOW! We're ready. Sure we are :=)
Amy called to see how the doctor's appt. went. When I told her about next week she was really surprised. She then asked what her responsibilities were as the back-up caretaker. You have to laugh or you'd probably cry so I'm laughing!!!
Amy got just as freaked out as Lee did when she heard what he was told last week. Flushing PIC lines. Cleaning Feeding tube clogs. Giving food through the feeding tube. Giving Insulin shots. Amy thought these sounded like jobs for a home health worker and shouldn't we have one? I explained it was really easy (according to the person who told us about it) and that they will train her and Lee in how to do this stuff. I'm going to quote Amy on my favorite and most reassuring comment she made during the conversation...."I don't know if I can give you a shot. I might faint." Oh joy! The only difference between Amy and Lee is that she voices her concerns and Lee keeps his to himself - but it's very obvious! Lucky for Amy that Michael's Aunt is a nurse. I suggested Amy discuss this with Carol so Carol can reassure her. Maybe Carol could reassure Lee -- and Me!
Not to worry though. I have complete confidence in both Amy and Lee. I love them and they love me so I'm sure they'll do well. Lee thought it would be a great idea to fly Vanessa out too as an additional support person. Oh you bet! This is the person who told me if I pulled out my own IV she'd have to hurt me! She watches House so she knows how that stuff can fly all over you! Poor Vanessa had to sit with me in the ER while I was still in Sacramento. We sat for hours and it gave me an opportunity to learn more about her. Let's see, she doesn't do needles (she too faints) and she doesn't do blood! The more I think about it, Vanessa would probably be a great addition to the support group! Either way, I'd love for her to come out for a long visit...you too Stephen. I love you guys and miss you!
They aren't the only ones we love and miss either! If ANYONE wants to sign up for the caretaker roll, feel free to call us or e-mail us. But don't feel bad if we don't get back to you right away because the list of interested parties will probably be really long :=)
I'll let you know how things are progressing.
Love to all,
Lee, Wendy and Missy