I have been meaning to post this since I got back from Cleveland Clinic for my 2nd lung transplant eval. It was awesome. Awesome Awesome Awesome. Here are the top ten reasons it was awesome:
1. Now I'm on two lists so I'm virtually guaranteed to get a transplant.
2. The doctors there were all, across the board, smart, direct and kind.
3. I now know my LAS score, which my other center refuses to discuss with me, telling me it is a UNOS policy, when in fact it is their policy. I am very comfortable with my score.
4. They have 4 tx surgeons and 5 procurement teams.
5. They do a surgery more than every other day. ( I can't quite say daily.)
6. Their patient services were phenomenal. Walking in, they give you an oxygen tank, check your machine or tanks like its a coat check, give you wheelchair if needed, help you find your way. They call if they can bump up your appointments. Wait times were minimal. Never did I receive a, "you're ten minutes late" grumpy attitude. Labs and Xray places all over- you go to whatever one you walk by and they're ready for ya. Everyone in a good mood. Everyone nice. No kidding! So very impressed.
7. Nifty shuttles help you get around.
8. Doctor in charge of my care gave me a hug and agreed that I am not in a "tender time of my life," as recent events have dictated. (She was like, "It's not a tender time, you're dying!" and I was actually relieved at her candor. I will write more on this issue in later posts.)*
*NOTES, but not apologies: When the doc said this, in the context of the conversation, it was both appropriate and a relief. I mean, we had already looked at my horrazzizable CT, discusses my case, and really, anyone active on the list is indeed on there because it is believed they would not survive otherwise. The reason her comment was a relief was that I received a recent correspondence that was "so very sorry for me" at this "very tender time in [my] life," which I thought was disgusting in context of its greater message because I don't think of being pre-tx as being a tender time. I think of it as a fight to live. I'm fighting for my life here, and giving up a lot, gaining a lot in the process. It is a biting, kicking, scratching (then sleeping) time of my life, but it is not "tender," like a piece of meat, or a baby bunny. Though, I would make a really cute baby bunny. ;)
9. We found a nifty Residence Inn where we plan to stay post-tx. This makes me ever the tx twin with Jessica Newport.
10. Generally renewed my faith in transplant process. Priceless.
The daily ponderings of Beth Peters as she writes about Cystic Fibrosis and lung trasnplant.
Subscribe to:
Post Comments (Atom)
New Blog and Site
Yo Old Friends! It's me, Beth Peters / CysticGal / the artist actually known as Mary ElizaBeth Peters . I am moving on from this bl...
-
Hello CGers!!! It's me. Boldly, bravely, I let my Dad bring me my laptop for tonight. I have been enjoying a computer hiadus, but wanted...
-
Dear CG Readers, I was having such difficulty deciding how to communicate with you again as everything unfolded over the past week and a hal...
-
1. To the guy that broke up with me right after I got out of the hospital: You are cowardly, and selfish, and also bald*. 2. To the neighbor...
Glad it went well!!
ReplyDeleteScore. Soon. Soon we'll be comparing scars (well, in words at least!)
ReplyDeleteBrandon
I am glad that you are happy with Cleveland. I have heard good things about that center and have been told they have a shorter wait list than the other 2 centers that I looked at. I also onsidered Cleveland but I decided I didn't want to relocate after the transplant which was the number one reason I went to Brigham and Women's. I am very happy with my surgery, my surgeon,and all the post tranplant care that I got in the hospital. I did have a problem with some of the attitudes and doctors pre-tranplant which I have expressed to several people at Brigham's. I also don't like DR. DD that I saw today. I wrote an entire blog about her. I guess my love for the surgeon out shined the few bad things and I am glad I put my life in his hands. I am a big girl and will now stand up to the doctors or attitudes that I don't like especially since this is my life and my health. Good luck with the transplant and I am rooting for you!
ReplyDeleteCG-
ReplyDeleteHonesty is excellent, ain't it? Courtesy's not so bad, either. I am right over here, hoping you get a call as soon as is possible.
xxoo
Renewing faith in the transplant process, this is so true! If I had any advice for people considering transplant, I would tell them to look at 2 centers, at the very least, because these teams our critical to our lives! Hope to talk to you soon about this :)
ReplyDeleteGreat to hear that you're on another transplant list! Not sure if you're a 30 Rock fan, but whenever you mention the Cleveland Clinic on the blog I keep laughing about the episode where they gush about the wonders of Cleveland. I guess this is just more proof :-)
ReplyDelete