ONE YEAR AGO
August 30, 2006 was the day that Robbi and I first met Dr. Ann Traynor.
August 30, 2007 we are returning to Maine, for the first time since we came home in February.
This is the first official visit to Dr. Ann... we had dinner with her at her sister's home in July. Today I had my first office visit with Dr. Bonnie Bidinger, since April. She had her baby and just returned to work.
Bonnie checked my Skin Score [this is done by assessing the thickness of skin over 17 areas of the body... it is a subjective test with a certain error margin]. My score today is the same as it was in April - which was the same in December 2006...
I hear from others (Devona and Amy, who both had their SCTs in April and May; and Jane, who had hers 2 years ago) that skin softening is one of the major benefits that they experienced. Robbi wonders if it has any thing to do with female / male differences. Aside from that (which may be a factor), what if Scleroderma is genetic (as opposed to viral)? Could it be both genetic AND also be able to be contracted, like some cancers? We are probably many years away from answers.
The other major development of late is that I have been using supplemental oxygen. On August 3rd I had breathing tests that showed a slight decline in my lung performance. The difference between this test and the previous one is small enough that Dr. Fisher (Pulmonologist) wants to wait until the next one to see if it is a true data point or an error. The test in October will give us a better idea.
The other test was to measure Oxygenation - how efficiently the body uses Oxygen. During a walking test, this number should be 90-100% - my number was 88%. This number qualified me for insurance-funded oxygen services. I take the tank when ever I go out. I use it most times when I get into the car, and sometimes when I get out to do something. When the humidity levels rise I need it more often.
I hope to have more stuff to write after meeting with Dr. Ann.
Stay tuned...
August 30, 2007 we are returning to Maine, for the first time since we came home in February.
This is the first official visit to Dr. Ann... we had dinner with her at her sister's home in July. Today I had my first office visit with Dr. Bonnie Bidinger, since April. She had her baby and just returned to work.
Bonnie checked my Skin Score [this is done by assessing the thickness of skin over 17 areas of the body... it is a subjective test with a certain error margin]. My score today is the same as it was in April - which was the same in December 2006...
I hear from others (Devona and Amy, who both had their SCTs in April and May; and Jane, who had hers 2 years ago) that skin softening is one of the major benefits that they experienced. Robbi wonders if it has any thing to do with female / male differences. Aside from that (which may be a factor), what if Scleroderma is genetic (as opposed to viral)? Could it be both genetic AND also be able to be contracted, like some cancers? We are probably many years away from answers.
The other major development of late is that I have been using supplemental oxygen. On August 3rd I had breathing tests that showed a slight decline in my lung performance. The difference between this test and the previous one is small enough that Dr. Fisher (Pulmonologist) wants to wait until the next one to see if it is a true data point or an error. The test in October will give us a better idea.
The other test was to measure Oxygenation - how efficiently the body uses Oxygen. During a walking test, this number should be 90-100% - my number was 88%. This number qualified me for insurance-funded oxygen services. I take the tank when ever I go out. I use it most times when I get into the car, and sometimes when I get out to do something. When the humidity levels rise I need it more often.
I hope to have more stuff to write after meeting with Dr. Ann.
Stay tuned...
posted by DesktopDavid at 6:45 PM
2 Comments:
Hi Dave - What did Dr. Ann say?
Hello Dave. Sorry I have not written in a while, but you are thought of daily. I did not have a lot of skin involvement, so I am not able to see a change in that. I do feel better over all and have more energy. Maybe it will just take you a bit longer to see improvement. Hang in there and don't let it get you down.
Love your friend,
Devona
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