I did it! Sent in my application, I have not informed my Pulmo yet, not sure what his reaction will be. At some point I will tell him, as I will need to send my med. records. Still edgy as I'm sure everyone pursuing therapy is and was. But if we are going to advance with all this new research there has to be firsts. Jeanine, Barbara & Nassin were the first pioneers but as stated many times on the forum the process of sct is still very new but I'm eager and excited and of course a little nervous (ok a lot nervous) to being one step closer to joining them.
One step Closer "Sent Application"
- Thread starter viv1314
- Start date
congratulations
good for you Viv that was the hardest part for me after that things really started to move fast Now I am waiting for my day hopefully you won't have to wait long I think the waiting is the worst part I hope your Dr's go along with you and if not find a new DR That is what I am going to do I want my Dr to be concerned about me and not that I am not following the normal path too bad you can't be our fifth in Oct sounds like we are taking up the whole bus take Care Bev in FL
good for you Viv that was the hardest part for me after that things really started to move fast Now I am waiting for my day hopefully you won't have to wait long I think the waiting is the worst part I hope your Dr's go along with you and if not find a new DR That is what I am going to do I want my Dr to be concerned about me and not that I am not following the normal path too bad you can't be our fifth in Oct sounds like we are taking up the whole bus take Care Bev in FL
High Five
Way to go Viv. I just spent a full day driving back and forth to a city in southern Colorado. Spent the day virtually without O2 except to climb a humongous set of stairs. Got to the top and then took it off. It will be worth it, believe me. There will be ups and downs as you can tell from our stories. This is all part of the process albeit upsetting when you are doing really well and all of a sudden take a dive! After a few months, the course gets steadier, but I still have a moment here and there. I hope Ruth and Jesse (Ruth's uncle) did well. The got treatment on the 4th. Howard is going on the 13th, so we have a few coming up and then 4 on the 4th. I hope I didn't miss anyone and I also hope after you have treatment that you will click on User CP and edit your name to show your date of treatment like the rest of us have.
Way to go Viv. I just spent a full day driving back and forth to a city in southern Colorado. Spent the day virtually without O2 except to climb a humongous set of stairs. Got to the top and then took it off. It will be worth it, believe me. There will be ups and downs as you can tell from our stories. This is all part of the process albeit upsetting when you are doing really well and all of a sudden take a dive! After a few months, the course gets steadier, but I still have a moment here and there. I hope Ruth and Jesse (Ruth's uncle) did well. The got treatment on the 4th. Howard is going on the 13th, so we have a few coming up and then 4 on the 4th. I hope I didn't miss anyone and I also hope after you have treatment that you will click on User CP and edit your name to show your date of treatment like the rest of us have.
Connie Golden
New member
Doctors
I had been collecting copies of all my test from my doctors. Actually, these records belong to you and I see no reason why anyone cannot request and receive their own medical records. I did start doing this a long time ago since I tried to get lung reductions surgery (they required medical records) and then took all the tests to be accepted for a lung transplant. I had more records on myself than Bio Cell required. I don't think you need to say too much at the onset.
I am going to my pulmonologist next week. I'm going to need a new Rx for the plane trip. After I have this in hand, I'll tell him where I'm going. He is very well thought of but he certainly has not been interested in any of my ventures. I brought him the Bio Cell brochure on my last visit which he handed back without so much as a question. He has frequently said that my lungs are so bad that they really shouldn't be supporting life. I find it difficult that doctors should rain on our parade since it's the only one. Connie
I had been collecting copies of all my test from my doctors. Actually, these records belong to you and I see no reason why anyone cannot request and receive their own medical records. I did start doing this a long time ago since I tried to get lung reductions surgery (they required medical records) and then took all the tests to be accepted for a lung transplant. I had more records on myself than Bio Cell required. I don't think you need to say too much at the onset.
I am going to my pulmonologist next week. I'm going to need a new Rx for the plane trip. After I have this in hand, I'll tell him where I'm going. He is very well thought of but he certainly has not been interested in any of my ventures. I brought him the Bio Cell brochure on my last visit which he handed back without so much as a question. He has frequently said that my lungs are so bad that they really shouldn't be supporting life. I find it difficult that doctors should rain on our parade since it's the only one. Connie
Medical records
Connie is right everyone. By law, your medical records have to be given to you. I had a dilly of a time getting mine from Kaiser. They kept losing my request. They did tell me that they would charge me a copying fee. After they delayed the process by a couple of weeks, I drove 25 miles to their office to get them myself. They still couldn't find them even though I had called ahead. I had to wait another hour and finally got them. They didn't charge me. Big of them huh? You really just need to send what you can. Do not go getting additional tests, etc. to get this therapy unless the clinic you choose to go to absolutely requires it. Nassin spent $4000.00 for every test under the sun and then found out that Argentinian law requires an X-ray and he had to have one done once he got there. I sent a copy of my CAT scan, bloodwork, echocardiogram and that was all I had. I only had the last two because of some heart problems I encountered prior to my O2 usage. This is not something to sweat like I said unless you are asked for more. Just send what you have and that should do it. The best thing you can do through this whole process is to not worry. It does your body more harm than good. Just think about what you will be doing next year at this time and how much you have to look forward to after treatment. I just did 10 minutes at 4.0 on the treadmill and kept the O2 at 6lpm so that I could keep up the pace. My sats never went below 94. I think I will start turning it down to 5 lpm because my nose felt like it had a tornado in it. I am making progress a little more each day.
Connie is right everyone. By law, your medical records have to be given to you. I had a dilly of a time getting mine from Kaiser. They kept losing my request. They did tell me that they would charge me a copying fee. After they delayed the process by a couple of weeks, I drove 25 miles to their office to get them myself. They still couldn't find them even though I had called ahead. I had to wait another hour and finally got them. They didn't charge me. Big of them huh? You really just need to send what you can. Do not go getting additional tests, etc. to get this therapy unless the clinic you choose to go to absolutely requires it. Nassin spent $4000.00 for every test under the sun and then found out that Argentinian law requires an X-ray and he had to have one done once he got there. I sent a copy of my CAT scan, bloodwork, echocardiogram and that was all I had. I only had the last two because of some heart problems I encountered prior to my O2 usage. This is not something to sweat like I said unless you are asked for more. Just send what you have and that should do it. The best thing you can do through this whole process is to not worry. It does your body more harm than good. Just think about what you will be doing next year at this time and how much you have to look forward to after treatment. I just did 10 minutes at 4.0 on the treadmill and kept the O2 at 6lpm so that I could keep up the pace. My sats never went below 94. I think I will start turning it down to 5 lpm because my nose felt like it had a tornado in it. I am making progress a little more each day.