Friday, August 22, 2008


First- Well I don't have to be struck down by lightning to get that we do not belong @ MGH.
In addition to the very long list of things we see as sub-standard care, today a new one and the final straw. the final step in the transplant eval process is his psyche eval.
The psyche Dr.P does not have a secretary so in order to make an appt there is a lot of phone tag. The initial appt which was made while he was inpt back in Feb/March for April Shawn had to cancel, I can't remember why exactly.
Then there was phone calls back and forth trying to reschedule, another appt was set for May which she had to cancel, then more phone tag and another appt which was made for July.
He ended up inpatient, she popped her head in the door introduced herself but said she could not see him d/t some emergency. She reassured him that this would not hold up his transplant eval. A new appt was scheduled for today.
When he arrived, no Dr.P. Apparently she was on vacation and several patients had shown up for appt's which she had failed to notify, cancel and reschedule.
Shawn proceded to medical records, picked up a hard copy of his entire record and came home.

One good thing was I got to spend the day reading and disecting his record. Amazing how many errors can be found and how dangerous some of those can be. Any hoo made for some great reading. I loved reading between the lines.

I also discovered that when he was at his best in 2/04 ie working 60-80 hrs per wk, 175 lbs, totally asymptomatic his FEV1% was only 56%/2.47 L. How the hell did he manage that? I never saw him SOB. How long did it take him to get there and how amazing that his body adapted. his O2 sats were always 90-92%.

Now 8/13 he was 24%/1.07L, FVC 36%/1.98 his O2 sats on 4L are 90-93% @ rest.

Crazy shit
This CF is crazy shit.

Second- Hi Kori thanks for the comment, makes me feel so official. Love my Boston..see the picture isn't he handsome?

Right now, there is a beautiful blue sky and Shawn is out happily riding his motorcycle having a good day. I love to see him happy and at peace.


Lisa said...

Glad that he got his file and you guys are going elsewhere!! Yikes!!

CowTown said...

Hi Tina,

I have you bookmarked now too. :) Yes, you are official here in cyberspace.

That sucks about the psych appts. I hope you find a new place that fits you both well!

Kim said...

Hi Tina,

now that all the excitement on DWT has died down I guess I have time to read regular hope you don't mind!! I'm really happy that Shawn has you, he is so lucky to have such a wonderful advocate/wife/friend. I know you guys will get to the bottom of his problems and that you're both going to work out a routine that will helphim to feel a lot better. I'm here for you guys!

Christy said...

Wow Tina, we do have a lot in common. I'm so glad you found my blog and now I've found your's. :)

I absolutely love Boston! I went there last year for the first time. I have a friend (also a CFer) who lives on the airforce base right outside of Boston.

What kind of nursing do you do? I only worked for 3 years before having to "retire". I miss it so much!! I really am glad we connected.

CFsteph said...

Thanks for visiting my blog. It sounds like Shawn and I have a lot in common. I am going to Brigham and Woman's for my lung transplant evaluation. So far things have gone smoothly for me there. Have you guys checked their program out?