When the call came today from the University of Washington Medical Center, Transplant Dept. to tell Clay he has officially been placed on the transplant list again, we were totally unprepared.  Sounds bizarre, but there is still one more medical procedure scheduled for next week, and until that has occurred we didn't think we could be listed.  

So we were really surprised to get that call!  Sitting there and looking at each other after getting off the phone we had to admit that while we are excited and grateful - we are also very nervous now that it's becoming reality.  Gut feeling - Clay won't be on the list very long this time.

You may recall that Clay has idiopathic pulmonary fibrosis (IPF).  Which means that he has a disease of unknown origin (is not related to smoking, asbestos, or any other known pollutants), it's untreatable, and progressive.  Pulmonary means its based in his lungs and fibrosis means that there is significant scarring of the lungs preventing the exchange of air.  When he was diagnosed on November 27, 2001 we were told he had 2.7 years to live.   

Which is when we were fortunate enough to be referred to the University of Washington Lung Transplant Department and the excellent medical staff there.  We have spent the last 8 years working with Dr. Ganesh Raghu, a pulmonologist specializing in IPF and head of UWMC's lung transplant clinic.  We learned that he is world renowned for his work with IPF, trying drug cocktails, and narrowing down the cause of it.  Thru a series of experimental drugs Clay was able to remain stable for nearly 3 years before the drugs stopped being effective.  Which was when he was initially placed on the transplant list.  Due to Dr. Raghu's work it is becoming more and more apparent that GERD is somehow a major player in causing the scarring.  Interesting. 

Since 2005 Clay has experienced only a slow (but steady) decline in his breathing.  Fast forward to the last 6 months; dramatic decline.  Clay can still get out and walk Adie, our dog, but the distance is probably a quarter of what it used to be, his pace much slower, and his oxygen use has increased from 2 liters at rest to 8/10, walking uses 10 - 15 whereas it used to be only 4 liters. 

He has good days and not so good days.  He tires quickly, some days he has little energy to even move around the house.  Weather and air pressure have a visible affect on how he feels also.

Lack of oxygen has many ramifications; lack of concentration and focus, difficulty (or inability) to multi-task, difficulty to follow thru on a task from beginning to end, or managing a multi-step process.  One area in which this became very apparent was driving.  In early October  it became necessary for Clay to discontinue driving until he has a new set of working lungs. 

It was about this time also that he was getting pretty close to listing weight.  On November 3rd we had an appointment with the nutritionist for the transplant program and although he weighed in over the maximum of 230 lbs.  it was obvious that had it not been mid afternoon and fully dressed that Clay would come in at weight.  She gave the go ahead for the team to at least begin the re-listing process of multiple procedures.  We we ecstatic! The last couple of weeks Clay has held steady at 222 lbs. Goal is to continue to drop to 215 with a BMI of 28.

We had almost forgotten the extent of the testing that has to be done in order to be listed.  Makes perfect sense once you think about the complexities of the surgery and outcomes.  So during November and the very beginning of December Clay has undergone: CT scans, X-rays, blood draws, blood gases, an echocardiogram, esophogram, bone density measures, 24-hour urine samples, 24-hour PH test, PPD, several 6 minute walk tests to measure his oxygen uses both for walking and distance.  The last walk test he had he did 1 minute 18 seconds without supplemental oxygen before his sats dropped to 80 but managed the whole 6 minutes when his oxygen was back on again.

We were also able to meet with the thoracic surgeon last week as part of the pre-listing process.  The surgeon, Dr. Mulligan, has been with UWMC for 9 yrs now (there abouts) and has been extremely successful with transplants.  He was just made the president of the international pulmonary transplant organization (I think that's what it's called).  Very impressive.  I say this only to tell everyone that we are incredibly fortunate to be here in Seattle and have this amazing medical team available, especially specializing in pulmonary diseases!  Other people waiting for a transplant have come from California, Alaska, Oregon, Idaho, and Montana. 

Several things that have changed since Clay was initially listed in 2005 that we were pleasantly surprised to hear:  we had been warned in 2005 that Clay would be difficult to match due to the size of his chest.  We knew that it would only be a person around his same size and barrel chest that would work as a donor.  That is no longer that case.  As Dr. Mulligan explained it to us, IPF shrinks lungs as the disease progresses.  At the time that Clay was diagnosed his lungs occupied the same amount of his chest proportionately as we all have.  Now, his lungs are probably 1/3 the size they were (he has about a 24% usage of his lungs right now).  Mulligan said that he could do fine with either one normal size lung or two from a smaller person.  

Mulligan also explained that according to the rating system of where people are placed on the "list" his score is going to be quite high due to the end stage of his disease and the amount of oxygen he requires.  It's one of those good news - bad news things, ya know?  It's wonderful to know that we are right up there at the high end of the list but oh yea, that's because he's so sick. 

The last medical test scheduled, and what we had thought had to be done before he would be listed, is a right-heart catheterization.  This will occur next Wednesday 12/29.  Clay has done this twice before as well as a left-heart cath.  All has looked well. 

That's it for now.  We're excited and ready.  I'll be blogging as anything else happens and let everyone know.

Merry Christmas, Happy Hanuka, and a wonderful New Year to all!!
Sandie and Clay

Back on the list again!!

As of 11:36 AM today we were notified that Clay has officially been placed back on the lung transplant list!!  Hurray!! What a wonderful Christmas present for us. 

Now that we're back in action I decided to write a new blog for those of you who send your thoughts, encouragement, and caring to us regularly.  This will keep everyone as updated on this new process as possible.  Some of you are new, some went thru this with us before.  For everyone I will give a short review.

Clay initially listed on September 19,2004 and remained there until November 2005 when he was "inactivated" due to weight gain putting him over the range the program allows.  During those 14 months you may remember that it became extremely boring with my trying to figure out creative ways to express how we felt at just waiting, and waiting, and waiting.  As the months dragged on without a call, and Clay's condition remained remarkably stable there didn't seem to be any reason to limit calorie intake or try to stay in maximum transplant shape.   Ultimately, his gaining weight resulted in being inactivated.    

In September 2009 our son-in-law Michael Prager along with daughter Georgina lovingly acknowledged to Clay their concern regarding his willingness to allow a food addiction to ultimately kill him by being unable to qualify for a life saving transplant.   And they were willing to back that up by having Michael come out from Boston and spend a month with us while he introduced Clay to his nutritionist, worked out an appropriate food plan, coached on healthy cooking/eating that is free of sugar and white flour.  They also did a lot of walking; and, participated in a twelve-step program.   It changed Clay's life - and ultimately mine.   From September 2009 to October 2010 he was able to loose the 50 pounds he had gained back without dieting, starving, or trying crash methods that he would never be able to sustain.  Thank you Michael and everyone else who freely gave of their support. 


Quite a bit has occurred to get back on the list.  I will cover those items in my next blog, we invite everyone to visit this site and follow this adventure!  

Merry Christmas to all and Happy New Year!
Sandie