Just wanted to let everyone know I have my next appointment scheduled with Dr Burger on July 8th. I will also be getting blood work, an echo, a nitric oxide exhale test (not sure what this is - it's something new) and I'll do another 6 minute walk. I can't wait to go and see how things are going! I am feeling good but since I have never really felt terrible it's hard for me to judge how well the meds are working. I do feel like I can climb the stairs a little easier so that is a positive sign.
I also wanted to thank everyone again for their donations to my website. I have raised $745 so far!!
Monday, June 21, 2010
Saturday, June 5, 2010
Fundraising Website
I started a fundraising website to help raise money to fund research on treatment and hopefully someday a cure for PH. The money goes directly to PH Association. For each donation I will send a "Hope for a PH Cure" bracelet. This was the easiest way for me to "sell" my bracelets. Any and all donations will be greatly appreciated. I also want to raise awareness of this rare disease. Each bracelet will have an information card with facts about PH. The website is www.firstgiving.com/cureph. Checks and money can also be given to me directly and I can send them into PH Association.
I started my meds on Thursday morning and so far so good. My blood pressure has been tolerating it very well and is actually a little better at times. Hopefully it's bringing down my pulmonary pressures! We will see when I go back to see Dr Burger in a month or so. Thanks again for all the support and prayers - it means the world to me and has been very helpful :)
I started my meds on Thursday morning and so far so good. My blood pressure has been tolerating it very well and is actually a little better at times. Hopefully it's bringing down my pulmonary pressures! We will see when I go back to see Dr Burger in a month or so. Thanks again for all the support and prayers - it means the world to me and has been very helpful :)
Wednesday, June 2, 2010
Good News!!
I had my cath today and got some good news! During the cath they gave me inhaled nitric oxide while measuring my pressures. Within a minute or two my pressures started coming down - I heard the cardiologist say "wow!" (in a good way!) He said normally it takes about 15-20 minutes for people's pressures to start coming down but I reacted very quickly. After the cath Dr Burger came and met with us. This time he was very positive and happy. He said it was great that I responded so well to the nitric oxide so he is going to start me on oral meds (thank you God for answering my prayers!!) I am starting tomorrow morning on Revatio. I have to take it three times a day. The down side is it is a vasodilator which means it will dilate all the vessels in my body, not just the ones in my lungs so I have to carefully monitor my blood pressure. Hopefully it won't affect my BP too much but if it does he said there are other things we can try. I am going to go back and see him in about a month or so and we will evaluate how well the medication is working. He said if it is working well and my pressure is tolerating it then he will discuss the possibility of joining a clinical trial to see if two drugs working together is better than just one. Right now I am just so grateful that I can take PO meds. I am going to continue to be positive and pray that it works!
Also while I was there today Dr Burger asked me to participate in a research study. I would have to walk on a treadmill then have an echo done to see how my pressures are affected by exercise. All other tests are done at rest so they are doing this trial to see the effects of exercise. It can only be done on newly diagnosed patients before starting medications. I was nervous to do it but I figured my participation is important in helping with PH. They told me only to walk until I felt uncomfortable - they weren't going to push me to go any further. Really it wasn't too bad. I did just what they asked and walked on an incline for a few minutes until my heart started pounding and I stopped. They did the echo right away. Unfortunately they didn't tell me much but I hope I helped give them information they need to improve outcomes for PH patients.
On that note I wanted to let everyone know that I am going to be making bracelets to sell in support of PH. I want to raise awareness of this rare disease as well as raise money for research. They are going to be purple beads (the color for PH awareness) with a HOPE bead in the middle. All the profits are going to be donated to PH Association for research in finding better treatment and hopefully a cure for PH. I will be starting a website and once that is up and running I will let everyone know.
Also while I was there today Dr Burger asked me to participate in a research study. I would have to walk on a treadmill then have an echo done to see how my pressures are affected by exercise. All other tests are done at rest so they are doing this trial to see the effects of exercise. It can only be done on newly diagnosed patients before starting medications. I was nervous to do it but I figured my participation is important in helping with PH. They told me only to walk until I felt uncomfortable - they weren't going to push me to go any further. Really it wasn't too bad. I did just what they asked and walked on an incline for a few minutes until my heart started pounding and I stopped. They did the echo right away. Unfortunately they didn't tell me much but I hope I helped give them information they need to improve outcomes for PH patients.
On that note I wanted to let everyone know that I am going to be making bracelets to sell in support of PH. I want to raise awareness of this rare disease as well as raise money for research. They are going to be purple beads (the color for PH awareness) with a HOPE bead in the middle. All the profits are going to be donated to PH Association for research in finding better treatment and hopefully a cure for PH. I will be starting a website and once that is up and running I will let everyone know.
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