More transplant tests

So the transplant committee met about my case today and they have some questions.  They want me to do some diaphragm tests to make sure that the surgery will make a difference with my breathing.  They are also concerned because of my history of aspergillosis--fungal infection.  Some patients contract this after a transplant and they are worried that I may be predisposed to this since I had it before.  They are going to discuss with my infectious disease doctor and may run some more tests.  So I am disappointed since this is the first I have heard of their concerns and both the surgeon and doctor seemed so confident that I would benefit from a transplant during previous meeetings.  Anyway they will be scheduling more tests soon so I guess I will wait and see what happens.

Capital Hill Block Party

I volunteered for the Capital Hill Block Party yesterday.  I saw some many people that I haven't seen in years--seems like all of Seattle was there.  I was in the Kexp booth for 3 hours and then I ventured out to check out some bands.  Huge crowds of people but I had a great time!  It was wild to see Seattle people going crazy and dancing!!  Usually they are much too hip for that.  I really loved seeing Vampire Weekend--they sounded amazing.  Christine Gregoire,  the governor introduced them.  That was kinda weird but she was stumping for Obama and I guess she is also coming up for re-election.  Menomena and Les Savy Fav were also great.  

I ran into a guy I worked with at AAA about ten years ago and one that I worked with at Amazon.com 8 years ago.  I also saw Jaime from NWFF who is now living in NY.  She is in town working on a film.  I ran into lots of people from Kexp and some other friends were there like Audrey from the stranger and Erin.  Lots of fun!  

Bob gave me a ride so that made things easy.  Today I am wiped out but recovering.  I rested all day today and will do the same tomorrow.  Bob took some pictures so I will post them when I get them.

Wednesday

I missed my workout on Monday so I went today instead.  I wasn't feeling motivated Monday and missed my ride so I just stayed home and made some calls regarding transplant financing,insurance,etc.   I found out that with my medicare advantage policy after I pay $100 for the first three days-----the rest is covered.  This is very good news.  Now I am just trying to figure out about the post transplant drugs--very expensive and necessary forever.   I have some calls in to my social worker and the insurance regarding this.  I am trying to get everything figured out before I have the transplant.  

Tomorrow I am going in for a colonoscopy---this will be the last test they need so they can evaluate me with the transplant committee.    So I should be hearing something soon!  I have been doing the colon prep all day---fasting and enjoying some broth and jello.  I can't wait til I can eat something tomorrow afternoon.  Bob is picking me up from the hospital and he promises we'll get some food right away.

Yesterday I went out for coffee with my friend Michaela.  We haven't hung out for quite some time so it was wonderful to see her.  She has MS and has good days and bad days.  Happily yesterday was a good day.  We went to Victrola coffee shop in Capitol Hill.

I am watching David Letterman and then I am to bed.  Can't wait to have the colonoscopy done-

I will dream about pizza!!

Saturday

I had a busy week so today I am chilling out and relaxing!  Thursday I met up with Jen Brown at Thaiku in Ballard.  It was great to catch up with her.  We had a nice lunch and then grabbed coffee at Mr. Spots.  I ran some errands and then caught the bus home.  Friday I went to pulmonary rehab--good workout.  

Tomorrow I may meet Kat for coffee.  We are playing it by ear.

Wed

I volunteered at Kexp today.  It was good to be there--always a good vibe!  Kinda quiet--lots of meetings and some folks are in Chicago. Richelle left early so I was in charge of the front area--just like old times.  I am going to start coming in on Wednesdays.  I haven't had a steady schedule since October so this is progress.  I was so busy with pulmonary rehab that I didn't have the energy to commit to every week until now.

I am researching transplant financing.  I talked to Angela--social worker at UW-today and she gave me numbers to contact Medicaid to see if I can qualify.  She told me to call them and see if it's an option and then we'll go from there.  She is really nice and helpful.

Tomorrow I am meeting Jen for lunch at Thaiku in Ballard--wonderful Thai food.  I am looking forward to seeing Jen--it has been awhile.

I am watching David Letterman and then off to bed.

Sunday night

I spent the weekend relaxing and catching up on sleep and laundry.  I had groceries delivered yesterday and paid my bills.  So I feel organized again.

Friday I went to see Dr Edelman--pulmonary transplant doctor at UW.  We had a good meeting and he looked through my tests and said there was nothing surprising.  I did the 6 minute walk which actually turned out to be two 6 minute walks.  The first one without oxygen and the second one with.  Then I had a chest xray.  I think I have now completed all the official evaluation tests.  I have to do a colonoscopy since I have the colitis issues.  That will be on the July 24th.  Then when the docs have all the info they will meet and let me know if I am listed and where I fall on the list.

Then I just wait for the call.  I am thinking maybe I need to take up a new hobby to pass the time faster and keep my mind off things.  Lately I have been busy enough with working out and volunteering so I may be ok. 

That's all for now--I am going to wind down with some tv and then crash.  Tomorrow I go to workout at 10.

Today I was at Kexp volunteering.  It was wonderful to be someplace besides the doctor!  I love hanging out with these folks.   So many diverse personalities--never a dull moment!  

Tomorrow I am going to get my haircut--I am ready for some color--it seems to have faded a bit.  I love new hair---it always looks good no matter what you do( at least for a few weeks).

Yesterday I went to a lung support meeting at UW--my first.  It was good to be around so many transplant and pre transplant people.  Everybody was helpful and so willing to answer questions.  

There was one young girl that had a transplant just a week ago.  She was in her hospital gown in a wheel chair and of course a mask.  She looked amazing---what an inspiration.  

I meet with Dr. Edelman again on Friday.  I also have my 6 minute walk on Friday.  Gwen is going to go with me. 

That's it for now--I am going to watch David Letterman and then crash.