Where Are They Now?
The community of SCT recipients is growing... The ones who I communicate with regularly are Devona, Jane and Amy. Devona and Amy went to Northwestern Univ., in Chicago. They worked with Dr. Richard Burt - who is leading the team that Dr. Ann (the Mad Scientist) started with. Jane and I worked with Dr. Ann. There have been severalothers who have been evaluated for treatment and now Sandra is lined up to begin, perhaps this August.
First, a quick update on those that have been through it...
Amy's treatment spanned several months - March into May. The details are available on her blog. Like me, (and I suppose most people who go through such an intense process), there has been a long period where she hasn't wanted to post updates.
I won't speak for her - I can only relate to the sense of not wanting to, or being able to relate my feelings in a public forum, when most of the time I didn't know how to relate to MYSELF and Robbi. It is only in the last week or so that I have risen above that foggy feeling. I suspect that Amy (and Devona) may be intensely focused on their internal recovery - physical and mental.
Devona's treatment overlapped Amy's. They met in Chicago.
Both of them have experienced physical complications that were more intense than I had. They had extreme nausea and extended loss of appetite. When Devona was about to be sent back home to Texas, she had a brief illness and had to go back into the hospital for a day or so.
Amy is a mother of 2 very young children. The physical and emotional demands on her are greater than I can imagine. Where she must watch over their every-moment development, I have only to let Sam (our cat) outside and in again... and keep him from editting my blog by walking across the keyboard.
Seriously, my truest challenge is re-establishing my relationship with Robbi - from caregiver/patient, to husband/wife. To evaluate the affects of a chronic illness on our relationships is an unrealistic quest. Robbi and I have known eachother since October 1980... we were engaged 2 1/2 weeks later... and married 6 months after that. We were experiencing our lives together for more than 20 years by the time Scleroderma was added to the mix. The issues we discussed before then were still there to discuss and then we had that one more to learn about together... and, today, we continue to work through all of the open issues as part of our partnership.
Jane continues to improve...
She celebrated her 60th Birthday last month! She has been living with Scleroderma for nearly 10 years. She is soon to celebrate the 2nd aniversery of her Stem Cell Transplant.
In the last year she has stretched her endurance to be able to direct an opera. That is quite a commitment of time, patience (the actors were all children!) and energy. I get exhausted when I sit in one place for an hour...
Jane has reached the endurance level of being able to exercise without having to get supplimental oxygen. I don't know here lung performance numbers (she tells me that I focus too much on the numbers stuff), but these are results worth noting. She tells me that some days are tougher than others. Occaisionnally, she just has to take a nap.
Her skin has returned to normal in all areas except her fingers.
One thing that Jane seem to share is a brain dysfunction. She refers to a condition called aphasia - which is when she has trouble speaking certain words - as though her brain is stuck in neutral. I feel like I have a cognitive glitch - when I can't think my way around issues. Lately, I'm having less incidences of this.
Jumping around to more things...........
This Wednesday, I am flying out to Jayme! I will be supervising his final packing-up - and then co-piloting the drive back to HOME!!!
YES - Jayme is moving back to our home. I won't spend more time to explain why he is leaving New Mexico (as that is his business), but you can be assured that it is ALL GOOD.
For my flight, I will be traveling with a Portable Oxygen Concentrator. This is a device that takes ambient air and forces it (through the nose hose), to supplement my breathing. In a plane, the air pressure is equal to 8000 feet, which is very thin. To get it OK'd with the airline I have to get a note, for my Pulmonologist, (as well as a prescription) that says that I have been checked out on the operation of this device. I have to prove that I can handle any alarm signals, so I don't scare / annoy the other passengers. Perhaps parents should have to get such a note that qualifies them to bring their kids onboard... just kidding.
If all goes well, my next posting will be from Las Cruces, New Mexico. We expect to be driving back, to arrive home about 8/3.
Stay tuned... film at 11...
First, a quick update on those that have been through it...
Amy's treatment spanned several months - March into May. The details are available on her blog. Like me, (and I suppose most people who go through such an intense process), there has been a long period where she hasn't wanted to post updates.
I won't speak for her - I can only relate to the sense of not wanting to, or being able to relate my feelings in a public forum, when most of the time I didn't know how to relate to MYSELF and Robbi. It is only in the last week or so that I have risen above that foggy feeling. I suspect that Amy (and Devona) may be intensely focused on their internal recovery - physical and mental.
Devona's treatment overlapped Amy's. They met in Chicago.
Both of them have experienced physical complications that were more intense than I had. They had extreme nausea and extended loss of appetite. When Devona was about to be sent back home to Texas, she had a brief illness and had to go back into the hospital for a day or so.
Amy is a mother of 2 very young children. The physical and emotional demands on her are greater than I can imagine. Where she must watch over their every-moment development, I have only to let Sam (our cat) outside and in again... and keep him from editting my blog by walking across the keyboard.
Seriously, my truest challenge is re-establishing my relationship with Robbi - from caregiver/patient, to husband/wife. To evaluate the affects of a chronic illness on our relationships is an unrealistic quest. Robbi and I have known eachother since October 1980... we were engaged 2 1/2 weeks later... and married 6 months after that. We were experiencing our lives together for more than 20 years by the time Scleroderma was added to the mix. The issues we discussed before then were still there to discuss and then we had that one more to learn about together... and, today, we continue to work through all of the open issues as part of our partnership.
Jane continues to improve...
She celebrated her 60th Birthday last month! She has been living with Scleroderma for nearly 10 years. She is soon to celebrate the 2nd aniversery of her Stem Cell Transplant.
In the last year she has stretched her endurance to be able to direct an opera. That is quite a commitment of time, patience (the actors were all children!) and energy. I get exhausted when I sit in one place for an hour...
Jane has reached the endurance level of being able to exercise without having to get supplimental oxygen. I don't know here lung performance numbers (she tells me that I focus too much on the numbers stuff), but these are results worth noting. She tells me that some days are tougher than others. Occaisionnally, she just has to take a nap.
Her skin has returned to normal in all areas except her fingers.
One thing that Jane seem to share is a brain dysfunction. She refers to a condition called aphasia - which is when she has trouble speaking certain words - as though her brain is stuck in neutral. I feel like I have a cognitive glitch - when I can't think my way around issues. Lately, I'm having less incidences of this.
Jumping around to more things...........
This Wednesday, I am flying out to Jayme! I will be supervising his final packing-up - and then co-piloting the drive back to HOME!!!
YES - Jayme is moving back to our home. I won't spend more time to explain why he is leaving New Mexico (as that is his business), but you can be assured that it is ALL GOOD.
For my flight, I will be traveling with a Portable Oxygen Concentrator. This is a device that takes ambient air and forces it (through the nose hose), to supplement my breathing. In a plane, the air pressure is equal to 8000 feet, which is very thin. To get it OK'd with the airline I have to get a note, for my Pulmonologist, (as well as a prescription) that says that I have been checked out on the operation of this device. I have to prove that I can handle any alarm signals, so I don't scare / annoy the other passengers. Perhaps parents should have to get such a note that qualifies them to bring their kids onboard... just kidding.
If all goes well, my next posting will be from Las Cruces, New Mexico. We expect to be driving back, to arrive home about 8/3.
Stay tuned... film at 11...
posted by DesktopDavid at 6:38 AM
2 Comments:
Good to see you posting again. I really enjoy reading your stories.I hope you do not wear yourself too thin in the long drive coming up. I do agree with you about kids on planes. Ang decided after the last flight she was on that we were not going to have another child. LOL. Keep that head up and take care.
Love,
Devona
I have continued to check your blog on a regular basis. Welcome back. We still refer to 357 as "David's room". Our thoughts continue to be with you.
Kim, RN -Maine
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