Ling Posted October 22, 2004 Report Posted October 22, 2004 I have got to tell you all about my new Cardiologist. He is brilliant to say the least. He listed to all my problems. Asked a hundred questions about them. He wanted to know when, how, what and how long. I have never met a Cardiologist that listens so well. When I was done with my hundred problems he explained to me why my body was doing all these things. He spoke about recent research being done on P.O.T.S patients,recent treatments available. The time, caring and dedication was amazing. I did the usual heart tests and then he gave his advice. There is a treatment been done in Brazil that works great for P.O.T.S patients. Some patients even go off all medication and have great life improvement. Their is a machine like this in Pretoria but it is 3 hours away from me. He is willing to specially build the equipment for me and let me use it in the attempt to improve my health. It is scary when you have to explain to a stranger what your daily life is like. **** I was scared after I heard myself. What he will do is a tilt table test twice a day for 2 months. If I understand it correctly it will force my body to start functioning like a normal person. It is dangerous if not controlled by someone knowledgeable. I truly have nothing to loose and you all know how badly I want to have a baby. Life without heart medication is not a option for me. He is going to phone around and try and have this machine built for me. I will let you all know where this is all leading. I would love it if he can help me then you all can come to South Africa for treatment to get well. Lets wait and see what happens. Have any of you on this forum gone for this treatment? He says he has seen a few patients in Pretoria improve considerably on this treatment. Quote
corina Posted October 22, 2004 Report Posted October 22, 2004 Ling,I'm soooo happy for you, you have found this cardio!!! I have never heard of this treatment but I know this way of thinking. I really do hope this will work out for you and yes: I will come over to South Africa when this seems to be THE solution . Oh and Ling: if this works out well for you, I wish you all the babies you want Good luck,Corina Quote
briarrose Posted October 22, 2004 Report Posted October 22, 2004 Congratulations LingI'm glad that you've found a doctor that is trying to help you and seems to have knowledge of POTS. It must be a huge relief for you to find someone that is trying to help.You'll have to let us know how it works out and I have my fingers crossed for you. As much as I would like to come to S.Africa, doubt I could afford the plane ticket My cousin and his wife are missionaries over near the Ivory Coast and my Aunt and Uncle told me how much their plane tickets were this summer to visit, wow couldn't believe it.Anyway, best wishessteph Quote
Michelle Sawicki Posted October 22, 2004 Report Posted October 22, 2004 That is great to hear, Ling!!! Having a good doctor is priceless. Please make sure to add him to our physician's page. What he is doing with you is called "tilt training", and it does help some people. Here's one abstract that talks about it: http://www.ncbi.nlm.nih.gov/entrez/query.f...1&dopt=AbstractI hope it helps!Michelle Quote
yogini Posted October 22, 2004 Report Posted October 22, 2004 That's really fantastic, Ling! It sounds really promising. Please let us know how the therapy goes!Now that you mention it, when I first got POTS, my cardiologist told me a about a therapy where you stand with your shoulders leaning against a wall and your feet 4 inches from the wall for 5 minutes. You do this once a day for 3 days in a row, and then increase to 10 mins/day for 3 days, then go to 15, 20, 25 and all the wy up to 30. Supposedly after a month your body adjusts to being in the upright position. I tried this for a while a few months ago, but couldn't tell whether it was helping me to get better. It certainly didn't hurt me any, though. I was a little skeptical back then because my cardio is not a POTS expert and I didn't read about it anywhere else. But now that I think about it, it seems like the same theory behind the tilt test therapy Ling describes. Has anyone else heard of this or tried it?Thanks,Rita Quote
MomtoGiuliana Posted October 22, 2004 Report Posted October 22, 2004 RitaMy POTS doctor also suggested I try that exercise. I did try it for several weeks and didn't notice any profound changes so gave it up. You're right, it doesn't hurt, so why not try it.It is so interesting how some treatments are useful for some people but not for others.Ling--I so hope this works for you. Please let us know.Katherine Quote
ethansmom Posted October 22, 2004 Report Posted October 22, 2004 I am so happy to hear that you've found a good doctor! I hope he can really helpyou more than the others have. This is the first time I've heard about tilt table training, but I do know lots of people who have been told to stand against the wall for increasing increments to build stamina, so I guess it's along the same thought process, just more advanced and under a doctor's supervision. You definitely have nothing to lose by trying...how else will you know?! Caring physicians are so hard to come by, and when we find one willing to go to great lengths for us, it feels so validating Please keep us updated on how you do!! Quote
Guest danielvasel Posted August 7, 2006 Report Posted August 7, 2006 ??????do we have a happy ending to this "story"(more like a drama)? Quote
MightyMouse Posted August 7, 2006 Report Posted August 7, 2006 Ling was pregnant when we last heard from her. Please see the chit chat section for our notes to her hoping she's okay. We've not heard from her in several months. The last time she logged into the forum was the first week of May of this year.Nina Quote
Guest danielvasel Posted August 7, 2006 Report Posted August 7, 2006 Ling was pregnant when we last heard from her. Please see the chit chat section for our notes to her hoping she's okay. We've not heard from her in several months. The last time she logged into the forum was the first week of May of this year.Ninathanks nina:)i just sent her an email... Quote
Dizzy Dame Posted August 7, 2006 Report Posted August 7, 2006 sorry, I thought this was a new post from Ling and was going to ask how her baby was. I just realized this is an old post of hers. Quote
dizzygirl Posted August 8, 2006 Report Posted August 8, 2006 YEAH!! i got excited when i saw a starter post with lings name on it!! then saw that its an old one.. i do hope that she is allright.. i sent her a card several weeks ago and i havent heard back from her.. i hope she is well! Quote
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