Shirley's story in her own words...

Hey Everybody,

It's been a remarkable 30-35 hours, and I'm still in a bit of a stunned state. I think Greg has told people about the dry run lung trip, which probably sounds terrible. It was actually the best thing that has happened to me in a long time. I didn't realize how stressed out I'd been for the last year between losing 2 Moms and 2 dear pets. I also didn't realize how unprepared and flat out scared I was. I had a shirt-tailed cousin who was transplanted about 2 years ago that just died, which, of course, made me worry about my decision. Mind you that this is a decision that took a lot of soul searching to make because there is a real risk involved. Doubt and fear are not a great way to start this journey.

When I got the call, I (can you believe this?) was speechless! I couldn't find my bag, I couldn't think. Thank God for my girls. They ran and grabbed stuff & I grabbed some stuff. Greg and I flew out the door in a matter of minutes, notepad in hand for whatever we forgot. Then I really started to worry about details left undone at home like Jessie's info I needed to fill out for next year, a new will, taxes to be filed, insurance information...the list is 4 legal size pages long. I was totally panicked by then, and was getting a jaw ache. Without thinking about it, I took some of that adult candy, Advil. Dumb move…this drug lowers your platelet count, and I knew I couldn't take it post-op, but didn't think about pre-op.

When we got to U of W, I was told to go in through ER (and this is one way that strengths my faith). I told the desk that I was there for transplant, and she loudly said "A transplant in ER?!!!"  Then someone behind me said she could take me there. I turned around and smiled and realized there were 2 women standing behind me smiling. The older woman had on a mask, but her eyes twinkled (not tinkled—tee- hee!) She asked me if I was there for a lung transplant (Hmmm, could it be my R2D2 I carry around that tipped her off?) and when I said yes, she told me she had been transplanted 15 years ago, which is when U of W started their program (Okay facebookers there must be an easier way to tell a long story.) She went on to say, "Honey this will be the best day of your life. It will change your life in ways you can't even imagine yet. You look healthy and you will do very well with this procedure. I just know you will do great! And, of course my eyes started to leak.

I felt like a 20 ton block had just been lifted from my shoulders. I told her that I had always wanted to meet a long term transplant patient. Before I knew it she and I were hugging. She was my sign and my angel. She is now on the kidney transplant list from the effects of a much higher dose of cyclo., an anti-rejection drug, but that she would be fine. I just wish I knew her name so that I could drop her a note of gratitude for lifting my burden. Her daughter took me up to the check in desk, while Greg was having an adventure of his own, that I was listening to at the security desk while I waited for him to go to ICU with me.

When I got to ICU, I got into the lovely garb they provide thankfully with some pants that I put on inside-out because the light was burned out in the bathroom. Then began several hours of testing, listening to the risks, signing, signing and signing.  At 3 am I got the word that the lungs were almost there, so it was time to go to pre-op. Off they wheeled me with Greg's new I-Phone. Man, did that get the poor guy moving in the wee hours! 

Next were more introductions to the transplant team, an arterial cath. put in to match the IV cath., redundant, but important questions asked like, why was I there? DOB?  What procedure was I having (I think I'd like that tummy tuck now, or, for sure, a boob lift since that's the area they'd be in anyway....

Then came the sedating drugs, which just seemed to channel my Mom's inquisitiveness even more out of my mouth. Since 1 mg didn't seem to make me sleepy, the anesthesiologist  decided to give me another mg., only making me even more chatty. This makes it about 4:30.

The phone rings, and the nurse leaves.  In comes doc number (?) and the nurse with the news that these lungs were too marginal to use. They were very apologetic, but I was ready to start my happy dance because this meant I got to go home and finish my 4 page prep list and start swimming again! YIPPEE! Really!

So, I am all for dry runs. I am calmer than I have been since the 1st conversation about transplant with my own doc, I feel much better because of the angel that I met in ER. I glad I will have time to do all my paperwork at home and repack with what I will really need (like non-acetone polish remover). I feel happy, blessed and fortunate to have all my wonderful family & friends that always support me.

Tonight is for sleeping. Please excuse all to misspellings, I haven't had much sleep. The prednisone they had given me never helps.  

My love to you all,

Shirley

 

Dry Run Retrospective

While I expected that we’d be disappointed if our trip ended up a dry run, the overwhelming feeling was actually relief. This was like the dress rehearsal that forced us to come face to face with all the little details that we hadn’t yet attended to. It’s hard to be on a state of near permanent readiness. And with Alpha 1, the transplant folks keep reinforcing the wait can be a couple years.

While Shirley was first placed on the list about nine months ago, she’s had several months of suspended status due to a bout of pneumonia in December and other various illnesses that force you to be temporarily placed in an inactive state. So it was quite a surprise when Kathy called Sunday. It was a true wake-up call.

But aside from helping us focus on the remaining preparatory tasks, a really neat thing happened last night in the ER waiting room.

At the time Shirley walked up to the admitting desk and announced that she was there for a transplant. The ER admitting person looked up quizzically and said “in the ER”? She was apparently new, and the gal at the next station explained to both Shirley and the admitting clerk that she needed to go upstairs to surgical admitting.

There were four women sitting in the waiting room and upon hearing Shirley’s announcement, two got up and came over to us. The younger one offered to show Shirley where she needed to go. And her mother asked if Shirley had said she was there for a lung transplant. She then explained that she had received a lung transplant 15 years ago, and it had been one of the best things to ever happen to her. She told Shirley that was about to experience a very wonderful thing that would change her life for the better.

Her words were very reassuring. She gave Shirley a big hug and wished her the best.

False Alarm – Sunday, May 31

It was funny. Just this morning I was thinking about the fact that it had been almost exactly 6 months since the last blog entry. I thought, perhaps tonight I’d sit down and write a quick note just to make sure the blog account didn’t go into some sort of inactive state.

Well, now I have something a little more interesting to write about. This evening, we were returning from a graduation party for Shirley’s niece, when I noticed my phone was vibrating. I’m still not sure how it got into silent mode, but by the time I grabbed it, I had missed the call. The area code was 206. I suspected it was a call from one of my project team members who lives in Seattle and is returning to work Monday after a 2-week trip. I figured I’d give her a call when we got home.

As we walked in the door, Shirley’s cell phone was ringing (she’d left it on the counter). It was Kathy Weekly, the transplant coordinator at UW Medical Center. Could we be in Seattle in 3-3 1/2 hours? This was the call. 8:11 pm, Sunday, May 31.

Of course we were not ready at all. We grabbed a couple bags and madly started throwing things in them. Good thing we’ve got a great bunch of kids to mind the fort. We grabbed a pad of paper tossed the bags in the car (which of course was nearly out of gas) and zipped down the road. Both cell phones going crazy as we’re trying to tell everyone we can think of that this might be the real thing.

We’d been previously advised that most folks have at least one “dry run” before they get a transplant. It’s necessary to get the recipient to the hospital and start the pre-surgical procedure before the donor organ is removed. When we spoke to Kathy again at about 10:30, the team had not yet left to go harvest the donor organs.

We pulled out of the driveway at 8:38. A quick stop at the gas station—I made the attendant play Indy 500 pit stop with the fill—and we were on the road. Even with a rest stop along the way, we were in the driveway of the ER by 11:40.

Once at the hospital the big rush was to get a blood sample, as the blood bank is located at another hospital and they needed time to type and cross match. A quick excursion to X-ray; vitals check and lots of folks in and out of the room. At 1:00 am we’re told the lungs should be here around 5:00 and they’ll want her in surgery around 3:00. Shirley says she’s scared to death, but she’s in great spirits and is laughing and joking with the nurses and residents.

Sure enough, a few minutes before 3, they call for her to come down to the pre-surgical center for prep. We meet Mimi, a surgical nurse who has been part of the transplant team for 14 years; and Dr. Gan, the anesthesiologist. Just before coming down, Shirley got her first dose of Prednisone and some antibiotics. These folks ask her dozens of questions – over and over again confirming her identity, allergies and what procedure she’s in for.

Around 3:45, I’m asked to leave the room. Time to put in the arterial catheter—no messing around with IV, this is straight into the arteries… I am the only non-staff person wandering the surgical floor of the hospital at this hour. A security guard unlocks the waiting room for me. Then a call—can I come back to the pre-surgical room? I’m walking down the hall (trying not to get lost in the maze) thinking that I’m going to give Shirley one last kiss before they wheel her off. But as I enter the room, she announces, “dry run.”

Apparently the lungs were considered marginal at time of harvest, and after being flown in from Montana, they didn’t pass the final blood gas test to prove their viability. So at 5 am, we start the long drive back to Tigard.

To be continued.