Drive to Duke or not drive to Duke that was the question!

Statcare Pulmonary Consultants

October 28, 2010

 

Diann and I took ‘ole blue’ aka our new 1999 ‘Cheech and Chong’ van to get my lungs tested and have the results mailed to Dr. Bedlack at Duke.  It was a beautiful fall day here in Tennessee and the leaves are starting their display of color.  We didn’t have to wait over 10 minutes and I was in taking my FVC test.  This test was preformed by an entirely different machine than the one they used at Duke.  I imagine they are very comparable. The bottom half of my lungs are, deteriorating, which I have known for a long time.  With my particular ALS symptoms, my muscles are being attacked, as in all ALS cases, but my lungs are being targeted at a rapid rate.  The lab tech who preformed the test indicated that my test showed 32%.  Diann and I knew that Dr. Bedlack had said that my case was excelled at 4% per month decrease over the normal 2% per month of his other patients.  We are praying that this level plateaus. 

Well, these are the cards I’ve been dealt and you can bet your bottom dollar that I will stay in this fight as long as I can.  No one can ever say that a Steffen ever walked away from a fight!  Here’s to all of you to continue to fight with me to find a cure for this disease so others that follow me can be cured!  Never let this disease be put under the carpet again.  It needs to be brought to awareness and be in the fore front to raise money to fund the research to find the cure!  I’m counting on all of you!     

Drive to Duke or not drive to Duke that was the question!

October 24, 2010

We had a scheduled appointment at Duke ALS Clinic in Durham, NC to see Dr. Bedlack and his staff on October 26th.  As the date drew nearer, for the first time in our trips there, we began to wonder if we should make the trip.  Not because of not wanting to go to the clinic, but because of the 6 ½ hour trip each way which included going through the Smokey Mountains.  Normally, we had no hesitation, but this time was different.  I was not thinking that I could take the driving time sitting in my power chair each way as my joints have started to hurt, and my feet swell up when I sit too long.  The other thing was Diann having to carry all the equipment that I would need for the trip.  We would have to stay two nights in a hotel, which are not comfortable nights for me.  The decision was made…we would call Dr. Bedlack’s office and tell them we were not going to make the trip. 

On Friday, October 22nd, we called to tell them we were cancelling our appointment.  They were great and said they totally understood the involvement it took for us to make the appointment….3 days out, 2 hotel stays and 13 hours in the van traveling.  I know that they cannot stop the progression of this disease, but what I really wanted to get on this visit was just to see how my lungs were progressing.  Dr. Bedlack had informed me on our last visit to Duke on August 24th that I was at 40% predicted on my lungs/diaphragm.  He also told be that I was progressing twice as fast as most of his patients at 4% per month. 

Monday, October 25th, around 5 PM the phone ran and it was Dr. Bedlack calling.  He said that he had heard that we had cancelled our appointment and he wanted us to know that he would still be willing to remain Don’s doctor.  We would just communicate over the phone and by e-mail.  (You won’t believe this, but Dr. Bedlack will answer our e-mails in usually 10 minutes and never over an hour.  He is the greatest communicator ever!)  I told him that I would like to find out what % my lungs were now and he told us how to set that up.  I have an appointment here in Knoxville for next Thursday at Statcare Pulmonary Consultants. 

So, Diann and I are having a football weekend watching all the games, college and pro.  I am in two football leagues.  Diann has become very proficient in working the computer in my fantasy league so I can pick my players each week.  During the games she has set my players up on the DirecTV NFL Football option so I can follow what they are doing.  We also have the computer on to see how I am doing against who I am playing in the league that week.  The other league is just a pool tracker league where I just pick the game winner in each of the 14 games that are played Sunday and Monday.  Got to love football season!

Visit from the Frazier’s

October 23, 2010

Gary Frazier called and said that he and his wife Peg were going to be headed to their winter home in Florida and would like to stop on their way to visit with us.  We had a great afternoon visit for a several hours while they were here.  It was nice to see them again and get caught up.  Gary brought with him many wishes from other John Deere Kansas City friends which I appreciate.  Thanks guys!  Gary and I relived some of our Waterloo days and some of the fun times we had including a pool game at the 218 tap in Waterloo.  I’m pretty sure that game really cost me, as I missed an appointment for flooring for our house.  Diann ended up buying the top of the line…go figure.    

Gary and Peg were going spend the night in Atlanta to break up their trip. We had to laugh as they joking discussed the possible room accommodations as they were planning to watch the Oklahoma/Missouri game that evening in their hotel room.  Peg is a die hard Oklahoma fan and Gary is true blue to Missouri.  They joked as they discussed the possible accommodations for the evening, could they watch the game in the same room?, would they need separate beds?, or would they need to actually get separate rooms?  Well, Missouri won….wonder how that turned out…. It was cute of them telling us about their team rivals…bet it turned out…. one room, with one king sized bed.  Ha!

 

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