Guest guest Posted September 25, 2005 Report Share Posted September 25, 2005 - Thanks for thinking of me. I had a good trip to Houston and was very impressed with the genetic cardiologist I saw at Tx Children's Hospital. He wants to introduce a beta blocker for my heart failure but do it at a very slow rate and have me closely monitored down there. My mom and will leave next Sun Oct 2nd and stay until Thurs Nov. 3rd to get me adjusted on the med and make sure I'm tolerating it ok before we head back home. We have reservations at a hotel directly across from the hospital and booked our flights today. We have friends who live in Houston and they can help us out some too and will pick us up from the airport to take us to our hotel. My sis is going to come for awhile and my dad may come for a long weekend to break up the time. It's going to be a tedious trial as my BP is so very low and beta blockers tend to lower BP as well as heart rate. A heart MRI will be done while I'm there as well to get a true grasp of the functioning of my heart. I continue to feel badly and have cosiderable shortness of breath and a racing heart at rest. The mito genetecist I saw in Houston was of no help. He has ordered some bloodwork to look at DNA sequencing for Polymerase Gamma (Alpers Syndrome) and MtDNA depletion screeening. I recieved a letter from Dr. Cohen that he had sent some of my muscle to Tx. for a Southern Blot test as well. I guess the most discouraging thing was that the docs said even if any of these are positive there is no treatment and nothing else can be done. It would just mean an additional Dx. I need help. I'll try to get to a computer sometime during the month and update you on how things are going. I feel like I have to get this a chance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2005 Report Share Posted September 25, 2005 Hi , I wanted to drop you a quick line to let you know that you and your family with remain in my thoughts and prayers and I hope that your up comming trip will be a successful one best of luck. Hugs, Donna K ---- LILQT4U1984@... wrote: > - > > Thanks for thinking of me. I had a good trip to Houston and was very > impressed with the genetic cardiologist I saw at Tx Children's Hospital. He wants > to introduce a beta blocker for my heart failure but do it at a very slow rate > and have me closely monitored down there. My mom and will leave next Sun Oct > 2nd and stay until Thurs Nov. 3rd to get me adjusted on the med and make sure > I'm tolerating it ok before we head back home. We have reservations at a hotel > directly across from the hospital and booked our flights today. We have > friends who live in Houston and they can help us out some too and will pick us up > from the airport to take us to our hotel. My sis is going to come for awhile > and my dad may come for a long weekend to break up the time. It's going to be a > tedious trial as my BP is so very low and beta blockers tend to lower BP as > well as heart rate. A heart MRI will be done while I'm there as well to get a > true grasp of the functioning of my heart. I continue to feel badly and have > cosiderable shortness of breath and a racing heart at rest. > The mito genetecist I saw in Houston was of no help. He has ordered some > bloodwork to look at DNA sequencing for Polymerase Gamma (Alpers Syndrome) and > MtDNA depletion screeening. I recieved a letter from Dr. Cohen that he had > sent some of my muscle to Tx. for a Southern Blot test as well. I guess the most > discouraging thing was that the docs said even if any of these are positive > there is no treatment and nothing else can be done. It would just mean an > additional Dx. I need help. > > > I'll try to get to a computer sometime during the month and update you on how > things are going. I feel like I have to get this a chance. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2005 Report Share Posted September 25, 2005 Sending up prayers, . I think of you often. Hugs, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2005 Report Share Posted September 26, 2005 Thank you so much Barbara. Thinking of you as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2005 Report Share Posted September 26, 2005 Dear Donna- Appreciate the continued prayers as always. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 You will continue to be in my thoughts and prayers. laurie > - > > Thanks for thinking of me. I had a good trip to Houston and was very > impressed with the genetic cardiologist I saw at Tx Children's Hospital. He wants > to introduce a beta blocker for my heart failure but do it at a very slow rate > and have me closely monitored down there. Quote Link to comment Share on other sites More sharing options...
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