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Diaphragm Issues Update

Jan 14, 2013 - 2 comments

Well I thought that since it is January 2013 I would give an update on me. Well I have what Doctors are saying is that I have Platoed. I am doing ok just on a ByPap right now. I do more then I am suppost to I am sure. I get very tird very fast. I can be going along and all of a sudden that all I want to do is sit and rest. If I do to much I have to recover over time. It sometimes takes me a couple of days. I found a couple of people in the world that has the same problem I do. The other people that has this seems to be on a Vent. or in worse problems then I am. It seems kind of unfair to them that I am going through what they are going through but I am not as bad as them. I do feel real bad for them. I am now seeing my Lung Dr. only every 3 months and same with my Primary Doctor. My heart Dr. I see like every year...

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1851499 tn?1320715637
by Clay351, Jan 21, 2013

Well it is January 20, 2013 I have had a lot of things good and bad happen to me... I thought I would add to my last post. First I am considered Perm. Disabled. I have been approved for Social Security Disability... I also have gotten my New York State Retirement Disability. This all happen by October 2011.... I was Approved on my 1st Application. 2nd My Doctors all are on the same page as they all were in April of 2011 when this all began. They all feel that the Bilateral Diaphragmatic Paralisys that I have been told I have is due to some sort of MDS thing. The problem is that they feel that it has not been discovered yet. They feel that someday it might but the sad thing is more people have to come down with this problem before they will even think to spend the Millions it cost to do Medical testing on it. There are Doctor's in New Jersey and in West Vergina that do proceedures on Diaphragms but they only deal with one side not both. So here is an update on my life. I am doing ok. I get very tired very very fast. It is not like wow I am getting Tired it is like oh man I need to sit NOW and REST NOW. I do have a Chair to use when I go to the Store or Mall. I have Sex with my Wife and I am done all the next day. If I talk a lot during the day I am more tired that night. I have been doing my Family tree. I have had my Mom come over to help me with it. I might work on it for a Couple of hours and then I am done. It is all on the Computer no WORK required but I am tired and have to sit down and rest. The other day I got up when 20 mins over the hill to pick up my Mom took her to Rochester for a Dr's appointment, went to lunch, came home to my house rested a couple of hours, then went to the Funeral home in Geneseo and then went to dinner. By this time I was so tired that my wife had to drive to Dansville to take Mom home and back to our house. Now you might say that is alot I don't think so... It is not like I was out lifting wood or digging up flowers. It was not hard labored work it was just sitting and driving and eating. That is it. But I was so tired that really at the Funeral Home I did not want to leave just wanted to put my feet up and go to sleep. That was not me ever. But now I can't do what I have done before at all. I did go out to Cleveland and those wonderful Doctor's out there basically told me that what is being done for me in Rochester is what they would do and not anything more. I have met a couple of other people that are having the same issues. Some are on a Trach and Ventelator and I am not. Sometimes I think that maybe I should be doing more because I am not as bad as those people. But the other week I had to get up at 5:30 in the morning because my Daughter and her husband own and operate a Dairy Farm so they needed me to watch their daughter my Granddaughter. I got up but on the 2nd day of a 4 day "job" I was like there is not way in hell I could ever do this. I only have her for like 2 hours and she is sleeping for like and hour and a half of that time. I can go back to sleep after she goes home but I still know I could never get up and go out to work and be able to perform any type of job unless it is to test Mattresses and I could sleep on each one for a couple of hours each... I am having my 15 minutes of fame, the local paper here in Livingston County called The Mt. Morris Shopper is doing a 4 week article on me and my condition. I am glad cause I feel that the only way people are going to know anything about my Problem is through the Media. I know some prolly would not agree but if you are having this type of problem we need to pull together and try to get this information out to them. This week I am going to write a letter to my local Senator that I know and see if there is a way for me to speak to Albany here in NY so maybe if I talk to the Polititions they might help get the word out. We will see. Thanks for listening.. If you ever want to talk to me you can e-mail me at cctaft6 @ rochester . rr . com I read my E-Mail's like 2 or 3 times a day. If you have this problem please E-Mail me so I know who you are and we can put our heads together and compair notes too. I am going to make a Support Group page on Facebook. Once I do I will post that Title on here and hope that everyone with this type of problem will come out and join me to help each other out and support each other.... Take care and God Bless you and God Bless the United States of America!

1796290 tn?1315574311
by MrTaft, Jul 14, 2013
I need you to know I was Diagnosed with Bilateral Diaphragmatic Paralysis. My right side is not Working at all my Left side is but not great. I am using my Chest Muscles to inhale and exhale. My main reason for asking this question I know I should probably be in a hospital but I am afraid that they will put a trech in and be placed on a Ventilator. I don’t want that. About 3 weeks ago I had a very sore Tooth. Went to see my Dentist he put me on Penicillin VK 500 MG 2 to start and then 1 tablet 4 times a day. About 3 days later I thought I had Bronchitis Went to see my Primary Doctor Dr. Sweeney. He took me off Penicillin and put me on Keflex 4 times a day because he said I had Pneumonia in right lung. 5 days later I was not getting any better I thought I was getting worse. He agreed and said I have it now in both Lungs. So he changed it to Avelox 400 MG once a day. This whole time I have been taking Promethzinel/Codeine 6.25-10 MG 4 times a day. Now it is 5 days later and I am not any better. What should I do?

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