Friday, June 18, 2010

Bad to the Bone

I spent the last couple of days meeting with my medical team here in San Diego.  I saw my wonderful pulmonologist, cardiologist, and rheumatologist, and spoke at length with my primary internist.

I like what my cardiologist said... he, like most of my doctors, didn't want to sway my decision.  But, as we discussed my options, he determined that I had a bad option and a worse option.  "The trick," he advised, "is to pick the bad option."

I'm here to tell you honey, that I'm bad to the bone.

I have decided to proceed with the stem cell transplant, off study and fully aware of the risks of a transplant with PAH (pulmonary arterial hypertension).  I'm pretty sure that's the bad option, and I embrace it with optimism.

Wednesday, June 16, 2010

There's no place like home...

So good to be home.  So grateful to my friends and family for taking care of the boys and keeping my spirits up.  So glad Jake's team made it to the Little League finals Friday so I can see them play!

Great job, boys!  Thanks for keeping the rally alive!

I appreciate all of your good wishes and comments.  Just a point of clarification... I haven't really been kicked to the curb!  The folks in Chicago are happy to help me, but I admit I felt forlorn when I learned that I no longer qualify to cross-over in the ASSIST trial.

Many options are on the table, and I will be meeting with my doctor here and talking with my family to decide on our course.

Oh, if I only had a brain!

Tuesday, June 15, 2010

I got the boot

Unfortunately, I got the boot.

My right heart is under strain, as revealed by the cardiac catheterization and the cardiac MRI.  This strain increases mortality with stem cell transplant.

I am no longer eligible for the stem cell transplant in the ASSIST trial.

Steve and I have some big decisions to make about how we plan to move forward.  Kristin and Dr. Burt are incredibly supportive and have given me options, but there is no good answer.


Monday, June 14, 2010

A Little Uncertainty

Am I done with my pre-testing?

I'm not sure.

I unofficially finished the testing today with my upper endoscopy and (hell in a hand basket) esophageal manometry.  I truly hope I don't have to do THAT one again.  :)

And I may know tomorrow, when all my tests are analyzed, whether I am able to move forward... or repeat that dang heart catheterization... or clean out the apartment...

This cute park is just a few blocks from my apartment.  I have been able to see more of Chicago's charm with this visit... the weather was not as bad as it usually is when I visit!  :)  I like my apartment.  The building is great and location is perfect for my needs.  So, hopefully I will be back this summer to explore more of the city from my little nest.

Will let you know when I do!  Thanks for the notes and the love...

Friday, June 11, 2010

We've got Trouble

Right here in River City
Trouble with a capital T
That sounds like P
And stands for...

Pulmonary Hypertension.

I will have to await the results and full evaluation of the cardiac MRI and stress echo to see if we can proceed to transplant.

I was reading (and enjoying) my new #1 Ladies Detective Agency book, "The Double Comfort Safari Club," when I was called into the cath lab.  When I returned from the lab-crying, I'm afraid- I picked up my book and began to read again.  Our hero, Mma Ramotswe, was in church, listening to the sermon, when a woman in front of her in the pew began to cry.  And these were literally the words I read...

"Do not cry, Mma, she began to whisper, but changed her words even as she uttered them, and said quietly, Yes, you can cry, Mma.  We should not tell people not to weep-we do it because of our sympathy for them-but we should really tell them that their tears are justified and entirely right."

I've always felt so weak when I cry.  So I'm glad my friend Alexander McCall Smith let me off the hook today.  I'm feeling better, and my doctor hopes we will be able to proceed as planned... 

Thursday, June 10, 2010

Go Blackhawks!

Wild times in Chicago!

The Blackhawks won the Stanley Cup, and the town has gone wild!

This morning I had my dobutamine stress echo, and the nurse and echo tech confided in me that the doctor in charge of my test was a big Philadelphia fan.  Afraid to rib him (they needed to keep their jobs), they begged me to do it for them.

Clever as ever, I waited until he cleared my heart on the stress test before innocently asking, "So, Dr. B, are you looking forward to the parade tomorrow?"  He looked at me, looked at the staff, and their was a VERY brief moment of silence before the nurse and tech burst out laughing.  Dr. B immediately knew they had put me up to it, and fortunately proved to have a great sense of humor.  :)

The city streets were super busy today as the Cup made the rounds, and there is a huge parade scheduled for tomorrow.  I'm hoping my doctors and nurses show up for the cardiac cath.  :)

Wednesday, June 9, 2010

The Domino Effect

Check out cute Domino!  You will of course recognize big Atlas, my chestnut horse, ridden here by Kelly.  Kelly is leasing Atlas while I'm away in treatment, and her daughter is leasing adorable little Domino.  The horses are making friends, and I hope they're in for an awesome summer!

And the dominos are falling here in Chicago, as the barriers to my recovery are knocked down.

I had a CT enterography this morning.  Lots of icky contrast and a little glitch with the PICC line not withstanding, I survived the CT.

Next came my first meeting with the pulmonologist.  She was very thorough and interested.  She is concerned that the larger lung nodule could represent a fungal infection, despite the negative cultures.  Additional blood and urine studies will be done to check for fungal antibodies.  Dr. Burt, however, is confident that the nodule is related to scleroderma after hearing that the 8 week culture results are clear.  This is critical right now, as a fungal infection would keep me from the transplant.  If we proceed, I will receive anti-fungal therapy for 6 months as a precaution, as all of Dr. Burt's patients do.

Dr. Burt was, surprisingly, less concerned about my fungal exposures at the barn.  I will be able to visit Atlas, maybe with a mask, at least out of the barn.  I'm not sure exactly how it will turn out.  But, I'm encouraged!  And he suggested that I will be back to riding, perhaps sooner than perviously expected.

I met with a gastroenterologist and will have endoscopy and manometry on Monday.

I met with a new cardiologist, and had a MUCH better visit than last year.  My heart (and lung nodule) are the last two barriers to the transplant.  He felt quite optimistic that my stress echo and cardiac catheterization will be clear.

And, finally, I had my official pre-transplant visit with Dr. Burt.  My skin score has worsened once again, and my lung function remains substantially worse than at randomization last year.  He carefully reviewed all of the risks of transplant, but had trouble hiding his excitement over recently compiled results in this study.  Nothing is official, nothing is published, but I left the meeting with a great feeling that this is the right path for me.

Let the dominos fall... I'm ready to beat this thing!

Tuesday, June 8, 2010

Dog Days???

Oh, Chicago.  Where are my promised dog days?

Another rainy day here in Chicago.  And another day filled with medical testing!

I got my PICC line placed this morning.  This "peripherally inserted central catheter" allows me to avoid the hassle of daily IV pokes and blood draws.  Instead, I care for my line and the nurses at the hospital can access it each day.  It was a fairly easy procedure to have it inserted, and it's not too uncomfortable to have.

Next, my favorite nurse Kristin drew 18--count 'em 18--vials of blood from me!  That's when I appreciated my PICC line the most, I think!  Kristin is the best.  She does all of my appointments and keeps in constant communication with me.

Kristin suggested I think about getting a wig--so I'm putting that out there for input.  She said my insurance will probably pay, so I called them and in fact they will.  I will lose my hair in July, and she said I will have "Demi Moore in Ghost" length hair in about 6 months.  Comments?  Advice?

Next was my dental clearance and X-rays (all clear), and then my cardiac MRI.  I spent about 10 hours, from 6:30 am to 4:30 pm, doing all the appointments today.  I'm wiped out!  I came home--in the rain, of course--and crashed for 3 hours before Steve texted me awake!

The best part of my day?  The play-by-play texting of Jake's Tournament of Champions baseball game.  Congrats to the Dodgers, and to Jake on his two singles and two runs!

Monday, June 7, 2010


Back in Chi-Town!  The trip wasn't easy... my cab broke down in a thunderstorm on the way to my apartment from the airport... but I made it.

I had a busy day of testing today.  My pulmonary function testing started the day.  My results were pretty stable from the last test, according to the tech.  :)  

I also had an EKG, high resolution Chest CT, sinus CT, and Chest X-ray today.  The day was pretty smooth at the hospital and clinic, the staff were wonderful, the other patients are friendly, and the facility here is really quite impressive.

My apartment is quite nice, as well.  I'm in the Streeterville part of town, which I really like!  The weather was perfect today... almost like San Diego.  :)  My apartment has lots of great amenities, one of which is a shopping cart in the lobby.  I can wheel it down to the grocery store, which means it's far easier for me to go shopping!  Never mind that I was dressed in my usual "layers" last night in the chilly rain, wheeling along with my shopping cart on the streets of the big city.

Send me an email and let me know how you're doing!