New Transplant Day Zero

Hey, more news. Mark's stem cell transplant has been moved: The first likely day is Thursday, September 3. (Day zero) It is just difficulty lining things up. It's not sickness. Because it is so far away, Mark has to have a regular chemo treatment in between.   -Susan

Good News....

I just finished my Pulmonary test. Last time I got a 72. I needed an 80 to get in the trial. Today I got an 85. Yea

Heading to see the Nurse to see what is next. Will keep you posted

Sabbatical for lungs

It looks like the lung medicine is working.  Mark can walk longer distances each day. 

The inhaler medicine is fluticasone propionate and is a corticosteroid. -Susan

Next step with lungs

Mark is taking an inhaler steroid twice a day and walking to strengthen his lungs.

I have been teaching him how to bubble (singing practice technique for strengthening your lungs).

His next lung test is on July 16 (Thursday). - Susan

Clinical trial

The trial is very specific.  Each patient has to have each body part working in a good way.  It makes the data better, so we learn more.

And it makes the FDA happy. -Susan

Timeframe

It looks like ten days of meds for the lungs and then a lung test.  He still has a PICC line and I have to take a class to learn to flush it.  -Susan

Discouraging news...

My Doc called last night. He said the Toxo test was negative that was the good news. He then said the bad news was I did not do well on the Lung tests. He said I only got a 72% on a particular test when the company that does the trial requires an 80%. He said he made a case to make an exception but they declined. 

So everything has been put on hold. The good news is the donor has agreed to hold. My Doc asked about lung problems and I recounted my episode with pneumonia. We are going to meet Monday to see if we can come up with a plan to get my lungs in better condition.