Clarification on Cleveland Rocks Statment #8- it was a positive! a reason to rock!!

Cystic Gal officially issues the following notice to readers regarding her earlier post, "Cleveland Clinic Rocked," to further clarify her statement and stance that the place was indeed, rock-tastic. Initial statement, and clarification, below. Thanks!

"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, discussed my case (lungs=bad! body=good! transplant=hope for soon!) 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 (that I will not disclose) because I don't think of being pre-tx as 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. ;)

Feel free to email me if you want to know more ;)

Cleveland Clinic Rocked

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.

Goin' on a Lung Hunt.

Not a lot of time on the sched. before I leave for Cleveland Clinic tomorrow to get myself on another UNOS list. I am so very excited. I made this video to show you :)