The title says it all...Lee and I are both tired after this month!
Since I blogged on the 20th, I've been to the hospital twice :-) and :-(
The first call to the hospital was on the 24th of March. It was my FIRST call for lungs. It looked like they had a "perfect match"! Woo Hoo!!!!! The call came in around 8:30 a.m. Lauren called...
- Lee answered the phone and it was Lauren. They had lungs that looked like a match and we needed to come to the hospital.
I can remember telling Lee that I was going to finish my shower. Easier said than done when you can no longer remember if you've rinsed off or not! I finished, got dressed and we started trying to get ready to walk out the door.
Bear in mind that we had put together our "suitcase" to take to the hospital with us a long, long time ago. It had water, books, puzzles, pillow, snacks etc. Well...after almost five months we had long unpacked that puppy and never packed it back up. So...we had to first find the bag and then put some stuff in it. Finally off to the hospital. I needed to call our friend Robert to ask him to check in on Missy because we didn't know when we'd be home. No problem...he's a great friend to us.
I called Amy from the car and she was at work. Her assistant went down and asked her to call me. She called me back wondering what in the world could be so important to call her out of a meeting with her boss. She too wasn't expecting a transplant call ;-) Amy made it to the hospital with just a couple of problems. Wouldn't you know it...her Blackberry died and she had to reboot it at home before she could leave. Not to worry I knew we had lots of time.
Amy called Sharen and the two of them made their calls and texts to let people know we were on our way to the hospital. They were both great. Sometimes it can be a little confusing until you've made those call. We may rethink how we send out the notices next time ;-)
Lee and I got to the hospital and were admitted to the short stay unit. That's where the lung, kidney and liver transplant patients go Monday - Friday. They go to the ER on the weekends. The short stay was great! The nursing staff was unbelievable. I know I say that about everyone here at Duke but it really is true! They are nice and everyone seems to have a great sense of humor. That is a must-have in lung transplant!
Have I ever mentioned that I have totally crappy veins? Well, I do. The nurses in the short stay can attest to that! It took two of them, working together, to get the blood draw to fill about 30 tubes. I don't have a clue why, at this point in the game, they need to run all those blood tests! God help us if they find something else now!
After the blood draw it was simply a matter of waiting to hear the outcome of everything. Originally the donor surgery was scheduled for 1:00 p.m. It then slipped to 3:00 p.m. I don't believe the donor was at Duke because it wasn't going to be an immediate transplant. For all I know they had to go out of town. Duke docs fly all over for lungs. That's one of the reasons that they have more transplants than most hospitals. Duke has the funding to fly to more remote places to check on lungs and pick them up. Lots of hospitals can't so they pass on those locations. I just found that out recently when I was wondering why Duke got so many more lungs than other hospitals. Here are a couple of pics we took - we were a little bored but excited and nervous too!
Working while waiting!
All of the soda and water on the table are from Amy and Lee. They later brought lunch up -- some really nice looking deli sandwiches. Me...I had nothing. I felt like the little piggy who had none! That would be just fine if I ended up with lungs!
Did you notice the recliner that Amy's in. She had that one and Lee had an even nicer one at the foot of the bed. We were at the end of the hall in the Short Stay so they opened our glass door outward to create a little "room addition" for us. It was really nice because we were right across from the rest room. That will be the room I request next time ;-)
Time was going by slowly. Of course it was. This is a really big deal so every hour seemed forever. We were all getting a little antsy so I called Lauren a couple of times that afternoon. I wanted to know how things were progressing. She had no update but she promised that she'd call the minute she heard. She was on call that day and night so she would be hanging in with us!
Then, at around 5:00 p.m. we got the call from Lauren. They found another big antigen that would have caused major rejection. I think Lauren was as upset as I was! So we headed home - after Lee and Amy fed me!
It turns out - sadly - that no one got those lungs. They weren't viable enough for transplant.
No we just continue to wait. It's hard to believe that I been on the list for five months already. We've been here six months! Wow! We sure didn't think it would take this long when we got in the truck to drive out! But thank God we did. With my antibody problems we're better off here than anywhere!
Oh, I forgot to show you Lee at the gym! He does have a grimace on his face! Lee made me laugh when we were driving to the hospital. He said he just knew that as soon as he joined the gym we'd get a call!
So to close out the month of March...I had the "dry run" on Wednesday, the 24th. I had a good breathing day on Thursday, the 25th - until that night. Then on Thursday night and Friday, the 26th I was super short of breath. It felt like I could only get air in about three or four inches into my lungs. Long story short...I was back in the hospital from Friday - Sunday.
They needed to give me some IV meds and then it was home and rehab. They give you NO break from rehab! I know in my heart that's a good thing but ughh! We made it hospital free through the end of March!
Here's a pic of some burp cloths I made for Leah (Amy & Michael's family). Daryl and Leah just adopted the most darling twin babies. That's a whole blog in itself! I'm really enjoying my embroidering and I'm also making some t-shirts with my heat press.