Guest guest Posted December 12, 2001 Report Share Posted December 12, 2001 Thank you Kathi, i'm trying very hard to take care of myself and stay healthy. Just a little history on myself, I started getting sick Oct. 97 at 24yrs of age, no reason at all. I started out with red eyes. They weren't sore, just red. The soreness came later. Then i lost my voice for 1 month. I had a doctor who didn't care. If it wasn't for me requesting to see an eye specialist, by this time it's going on 2 mos and my eyes are getting worse. As soon as this doctor looked at me, she said i have seen this before, but i need to do blood work to check my sed rate. It was 99%. If it was for this lady i wouldn't be here. She told me to change doctors after she called my doctor and told him that something is really wrong with me and that he needed to refer me to a Rhuematologist to get more help. I don't know what exactly she told this man, but he was checking on me everyday after this, setting up appts. Then i left this doctor and started seeing an Internal Medicine doctor. I started getting better care. Before i changed doctors, I completely lost my voice. My neck was so sore and tender to the touch. The damage to my vocal cords i think occured during this stage of my getting sick. I have a lot of scar tissue around the cords and this area is narrow. So that is why right now until this area widens and the scar tissue goes away, i will have to keep my Trach. I had some narrowing and collasping of my left main bronchial, that is where my stent is. I was officially dx on Jan 8,1998 w/RP. During this year after m dx's; This whole entire year i was in and out of the emer. room. I was being treated for asthma, it acts like it. My doctors were so worried about the side effects of the Prednisone that they were trying to keep me on a low dose. When they did raise it up it was only for 3 to 4 days. I started having breathing problems 5 after my dx's with rp. Well, I went into the hospital on Jan 10, 99'. I was getting wose, and no one had any idea what to do with me. The 1st hospital i was in they had not a clue of what to do with me. All they were doing was giving me breathing treatments and letting me breath helium, because it's a lot thinner than Oxygen. They kept running out of the helium. They kept having to go to Parkland in dallas, 45mins one way to get these large helium tanks. They were going to just transfer me over there but there were no beds. Finally there was an opening at this hospital called Zale Lipsy, next door. It's private and for critically ill patients. My pulmonologist was out of town. He came back into town,he's the one who had me transferred me to this hospital in Dallas, otherwise i would have been dead if i had stayed one more night at this one hosital. This hospital i was going to was part of a medical school, (UTSouthwestern Med ctr). I was put in an ambulance and they told my parent heres the address to the hospital, because you won't be able to keep up with us. I am really just sick at this point. Well I was placed in a medically induced coma. I was put on a ventillator. This doctor did not want me moving at all. My parent couldn't touch me at all. He went to a doctors convention to find out how he could help me, he was gone for 2 weeks. He came back told my mom, what he was about to do he had never done and that it may take 16hrs and that then afterwards he still didn't know if it would work. He dialated my airway, to open it back up some. He placed a wire mesh stent in my Left main Bronch and i gave me a Tracheostomy. I was knocked out this whole time, i don't remember anything, just bits and pieces. To this day I can't make out what was real from what i was dreaming. My doctors told my mom that i probably wouldn't remember anything when i woke up and i didn't. I ended up having 2 surgerys the first one failed because the tissue around the stent collapsed, so my doctor had to take have another stent made that was longer and stronger. The second surgery worked. After my surgery, my left lung started filling up with blood so they had to put a chest tube in me to drain it. I was in bed this whole time, so naturally without eating and not moving my body was weak. I had to do 1 1/2 month of Physical Therapy, i was so weak. I couldn't do anything for myself. I went into the hosital Jan 12 and left March 11. I had at least 10 doctors working on me. I had one nurse who just sat by my side this whole time. If it wasn't for the nurse recognizing that something was wrong that could have been more trouble. I got really good care at this hospital. These were very good doctors, they didn't want me to receive care from my old doctors so i just stayed with them. My doctors have taken really good care of me. So this year when my doctor told me that something was wrong with my left lung, i was really worried. Air was barely moving on the left side and it was slowly dimenishing. I thought Oh No, not again. I had a build of mucus. This could have turned into pneumonia. And the scary part is, i couldn't tell i was having problems breathing. Scar tissue had built up around the stent slowly closing off the opening to my left lung. Well, at this same time, i'm still going to the gym and exercising. I was tired a lot but i thought it was from the Methotrexate. I didn't want to believe what i was hearing. I just got off my computer and let everybody know that i wouldn't be online as much or it at all, but i would be back. I had to start listenting to my body. I am glad everything ended well. I am fine now, Everything is back to normal....what ever normal is,,,,ha ha. I tried to make this as short as possible. I just wanted to share the symptoms i had and what led up to me having my stent and Trach. Maybe some of you can relate and get help sooner if you are having breathing problems. Everyonce in a while my right eye will get sore, i notice that happens when i have just been upset or stressed for some reason. Okay bye now, Take care Kim/ Hi Kim,Thanks so much for letting us know how you and your mom are doing. I wish you the best of luck with your surgery. I completely understand the whole mental issue because I am ready to check myself into a mental bed right now. I'll let you know if they have an extra one. I wish you a very Merry Christmas and Happy New Year.KathiHi ,I don't really know anything about you other than what I read today but it sounds like you have been through hell. It sounds as if you are beginning to see a little light at the end of that proverbial tunnel!!! Not having to fly back and forth to California so often will hopefully be a big help!! Please take care of yourself!!Kathi_________________________________________________________________Chat with friends online, try MSN Messenger: http://messenger.msn.comDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2001 Report Share Posted December 12, 2001 Thank you Kathi, i'm trying very hard to take care of myself and stay healthy. Just a little history on myself, I started getting sick Oct. 97 at 24yrs of age, no reason at all. I started out with red eyes. They weren't sore, just red. The soreness came later. Then i lost my voice for 1 month. I had a doctor who didn't care. If it wasn't for me requesting to see an eye specialist, by this time it's going on 2 mos and my eyes are getting worse. As soon as this doctor looked at me, she said i have seen this before, but i need to do blood work to check my sed rate. It was 99%. If it was for this lady i wouldn't be here. She told me to change doctors after she called my doctor and told him that something is really wrong with me and that he needed to refer me to a Rhuematologist to get more help. I don't know what exactly she told this man, but he was checking on me everyday after this, setting up appts. Then i left this doctor and started seeing an Internal Medicine doctor. I started getting better care. Before i changed doctors, I completely lost my voice. My neck was so sore and tender to the touch. The damage to my vocal cords i think occured during this stage of my getting sick. I have a lot of scar tissue around the cords and this area is narrow. So that is why right now until this area widens and the scar tissue goes away, i will have to keep my Trach. I had some narrowing and collasping of my left main bronchial, that is where my stent is. I was officially dx on Jan 8,1998 w/RP. During this year after m dx's; This whole entire year i was in and out of the emer. room. I was being treated for asthma, it acts like it. My doctors were so worried about the side effects of the Prednisone that they were trying to keep me on a low dose. When they did raise it up it was only for 3 to 4 days. I started having breathing problems 5 after my dx's with rp. Well, I went into the hospital on Jan 10, 99'. I was getting wose, and no one had any idea what to do with me. The 1st hospital i was in they had not a clue of what to do with me. All they were doing was giving me breathing treatments and letting me breath helium, because it's a lot thinner than Oxygen. They kept running out of the helium. They kept having to go to Parkland in dallas, 45mins one way to get these large helium tanks. They were going to just transfer me over there but there were no beds. Finally there was an opening at this hospital called Zale Lipsy, next door. It's private and for critically ill patients. My pulmonologist was out of town. He came back into town,he's the one who had me transferred me to this hospital in Dallas, otherwise i would have been dead if i had stayed one more night at this one hosital. This hospital i was going to was part of a medical school, (UTSouthwestern Med ctr). I was put in an ambulance and they told my parent heres the address to the hospital, because you won't be able to keep up with us. I am really just sick at this point. Well I was placed in a medically induced coma. I was put on a ventillator. This doctor did not want me moving at all. My parent couldn't touch me at all. He went to a doctors convention to find out how he could help me, he was gone for 2 weeks. He came back told my mom, what he was about to do he had never done and that it may take 16hrs and that then afterwards he still didn't know if it would work. He dialated my airway, to open it back up some. He placed a wire mesh stent in my Left main Bronch and i gave me a Tracheostomy. I was knocked out this whole time, i don't remember anything, just bits and pieces. To this day I can't make out what was real from what i was dreaming. My doctors told my mom that i probably wouldn't remember anything when i woke up and i didn't. I ended up having 2 surgerys the first one failed because the tissue around the stent collapsed, so my doctor had to take have another stent made that was longer and stronger. The second surgery worked. After my surgery, my left lung started filling up with blood so they had to put a chest tube in me to drain it. I was in bed this whole time, so naturally without eating and not moving my body was weak. I had to do 1 1/2 month of Physical Therapy, i was so weak. I couldn't do anything for myself. I went into the hosital Jan 12 and left March 11. I had at least 10 doctors working on me. I had one nurse who just sat by my side this whole time. If it wasn't for the nurse recognizing that something was wrong that could have been more trouble. I got really good care at this hospital. These were very good doctors, they didn't want me to receive care from my old doctors so i just stayed with them. My doctors have taken really good care of me. So this year when my doctor told me that something was wrong with my left lung, i was really worried. Air was barely moving on the left side and it was slowly dimenishing. I thought Oh No, not again. I had a build of mucus. This could have turned into pneumonia. And the scary part is, i couldn't tell i was having problems breathing. Scar tissue had built up around the stent slowly closing off the opening to my left lung. Well, at this same time, i'm still going to the gym and exercising. I was tired a lot but i thought it was from the Methotrexate. I didn't want to believe what i was hearing. I just got off my computer and let everybody know that i wouldn't be online as much or it at all, but i would be back. I had to start listenting to my body. I am glad everything ended well. I am fine now, Everything is back to normal....what ever normal is,,,,ha ha. I tried to make this as short as possible. I just wanted to share the symptoms i had and what led up to me having my stent and Trach. Maybe some of you can relate and get help sooner if you are having breathing problems. Everyonce in a while my right eye will get sore, i notice that happens when i have just been upset or stressed for some reason. Okay bye now, Take care Kim/ Hi Kim,Thanks so much for letting us know how you and your mom are doing. I wish you the best of luck with your surgery. I completely understand the whole mental issue because I am ready to check myself into a mental bed right now. I'll let you know if they have an extra one. I wish you a very Merry Christmas and Happy New Year.KathiHi ,I don't really know anything about you other than what I read today but it sounds like you have been through hell. It sounds as if you are beginning to see a little light at the end of that proverbial tunnel!!! Not having to fly back and forth to California so often will hopefully be a big help!! Please take care of yourself!!Kathi_________________________________________________________________Chat with friends online, try MSN Messenger: http://messenger.msn.comDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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