Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 , my name is Dolores and I will be sure that you are added to my church's prayer chain. The smoker's lungs are likey due to " second-hand smoke " which is more dangerous to your lungs than if you did smoke. Jacy Windwhispers greytwhisperer@...> wrote:Hi Everyone! I haven't written lately, but I have been reading everyone's posts and praying for all of you. I have been having a very difficult time now. I am 53 and have been sick since 1986. My husband was a pastor, but he stays home and is my caretaker now. I have hypothyroidism, NASH (an alcoholic liver, but I've never drank), pancreatic enzyme insufficiency, metabolic syndrome, error in zinc transport, hypomobility of the intestines, muscle weakness, muscle spasms, encephalopathy, lack of sweating and now profuse sweating, asthma,etc., etc., etc. Now, I have some new problems, COPD, and I totally stop breathing. Not fun. I've had the paramedics called twice in the past week and a half, once from a sleep lab. I had to be intubated, my pupils were fixed and dilated, and I couldn't wake up. I knew what everyone was saying and doing, but could not respond or move. I started out on a CPAP machine, now a BIPAP, but I'm having trouble getting a BIPAP-ST. It has a backup that makes it a respirator when I stop breathing. Medicare thinks that you should be on a regular BIPAP for 3 months before you get switched to a BIPAP-ST. I have to wait until next week to see the pulmanologist to get another prescription and a letter of medical need, in order to get one. In the mean time, my husband stays awake all night making sure I keep breathing and sleeps during the day, when I'm awake. I see Dr. Enns at Stanford. They called, yesterday, and told me that my muscle biopsy of 11 years ago showed a deficiency in the IV enzyme. But the biopsy is old and could be wrong. The testing was done in Buffalo, NY. So, they are having all of the samples shipped to them at Stanford for further testing. They don't want to do another biopsy, because of my breathing difficulties. I just need a diagnosis. Even if the ER people don t know what it is, they won't be asking me if I'm an addict, and I can't even respond to them. Gosh, I have smoker's lungs (I've never smoked) and an alcoholic liver (but, I've never drank). When the hippies were big, I was a Jesus People. In need of your prayers, Kaspick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 Sorry I do apologize as I had a phone call and hit the wrong key, so I will attempt to get this finished this time. I also have COPD and Thank the good Lord not like yours as I am alone except for my cat. After I started having seizures my husband didn't get much rest so I can see where your husband is coming from. I will have your name added to my church's prayer chain as well as keeping you in my thoughts and prayers. God Bless, Dolores Jacy Windwhispers greytwhisperer@...> wrote: Hi Everyone! I haven't written lately, but I have been reading everyone's posts and praying for all of you. I have been having a very difficult time now. I am 53 and have been sick since 1986. My husband was a pastor, but he stays home and is my caretaker now. I have hypothyroidism, NASH (an alcoholic liver, but I've never drank), pancreatic enzyme insufficiency, metabolic syndrome, error in zinc transport, hypomobility of the intestines, muscle weakness, muscle spasms, encephalopathy, lack of sweating and now profuse sweating, asthma,etc., etc., etc. Now, I have some new problems, COPD, and I totally stop breathing. Not fun. I've had the paramedics called twice in the past week and a half, once from a sleep lab. I had to be intubated, my pupils were fixed and dilated, and I couldn't wake up. I knew what everyone was saying and doing, but could not respond or move. I started out on a CPAP machine, now a BIPAP, but I'm having trouble getting a BIPAP-ST. It has a backup that makes it a respirator when I stop breathing. Medicare thinks that you should be on a regular BIPAP for 3 months before you get switched to a BIPAP-ST. I have to wait until next week to see the pulmanologist to get another prescription and a letter of medical need, in order to get one. In the mean time, my husband stays awake all night making sure I keep breathing and sleeps during the day, when I'm awake. I see Dr. Enns at Stanford. They called, yesterday, and told me that my muscle biopsy of 11 years ago showed a deficiency in the IV enzyme. But the biopsy is old and could be wrong. The testing was done in Buffalo, NY. So, they are having all of the samples shipped to them at Stanford for further testing. They don't want to do another biopsy, because of my breathing difficulties. I just need a diagnosis. Even if the ER people don t know what it is, they won't be asking me if I'm an addict, and I can't even respond to them. Gosh, I have smoker's lungs (I've never smoked) and an alcoholic liver (but, I've never drank). When the hippies were big, I was a Jesus People. In need of your prayers, Kaspick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 --- Jacy Windwhispers greytwhisperer@...> wrote: They don't want to do another > biopsy, because of my > breathing difficulties. I just need a diagnosis. > Even if the ER people don > t know what it is, they won't be asking me if I'm an > addict, and I can't > even respond to them. , Are you taking supplements? Do your docs think you have mito? If so, and they're treating you for mito, then I don't know what a diagnosis will do for you. I'm a nurse. I can tell you that docs don't know what mito is. A mito diagnosis won't make medical people stop thinking that you're an addict. Even with a specific diagnosis, well, many medical people don't know a thing about mito and don't believe specific diagnoses by the leaders in mito. A specific mito diagnosis will not stop the prejudice. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail for Mobile Take Yahoo! Mail with you! Check email on your mobile phone. http://mobile.yahoo.com/learn/mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 I will keep you in my thoughts and prayers. Hugs, laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 I am so sorry that this is so difficult at this time My name is Jan my husband has mito I am his care giver I will put you on my prayer list and know that God is right there along side of you Giving you comfort all of the way and also your husband Hugs Jan need prayer Hi Everyone! I haven't written lately, but I have been reading everyone's posts and praying for all of you. I have been having a very difficult time now. I am 53 and have been sick since 1986. My husband was a pastor, but he stays home and is my caretaker now. I have hypothyroidism, NASH (an alcoholic liver, but I've never drank), pancreatic enzyme insufficiency, metabolic syndrome, error in zinc transport, hypomobility of the intestines, muscle weakness, muscle spasms, encephalopathy, lack of sweating and now profuse sweating, asthma,etc., etc., etc. Now, I have some new problems, COPD, and I totally stop breathing. Not fun. I've had the paramedics called twice in the past week and a half, once from a sleep lab. I had to be intubated, my pupils were fixed and dilated, and I couldn't wake up. I knew what everyone was saying and doing, but could not respond or move. I started out on a CPAP machine, now a BIPAP, but I'm having trouble getting a BIPAP-ST. It has a backup that makes it a respirator when I stop breathing. Medicare thinks that you should be on a regular BIPAP for 3 months before you get switched to a BIPAP-ST. I have to wait until next week to see the pulmanologist to get another prescription and a letter of medical need, in order to get one. In the mean time, my husband stays awake all night making sure I keep breathing and sleeps during the day, when I'm awake. I see Dr. Enns at Stanford. They called, yesterday, and told me that my muscle biopsy of 11 years ago showed a deficiency in the IV enzyme. But the biopsy is old and could be wrong. The testing was done in Buffalo, NY. So, they are having all of the samples shipped to them at Stanford for further testing. They don't want to do another biopsy, because of my breathing difficulties. I just need a diagnosis. Even if the ER people don t know what it is, they won't be asking me if I'm an addict, and I can't even respond to them. Gosh, I have smoker's lungs (I've never smoked) and an alcoholic liver (but, I've never drank). When the hippies were big, I was a Jesus People. In need of your prayers, Kaspick Quote Link to comment Share on other sites More sharing options...
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