A
ArmyWife13
Guest
Best of luck...none of this is easy but I truly hope they can evaluate it and decide against a transplant. My thoughts are with you.
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Result from the pneumathorax is i need a lung transplant
- Thread starter carly23
- Start date
A
ArmyWife13
Guest
Best of luck...none of this is easy but I truly hope they can evaluate it and decide against a transplant. My thoughts are with you.
nhaggard07
New member
Its alright to ask anything you want. I have learned that these forums here on this page is the biggest ace in your hand against your fight with cf. To answer your questions- you said something about theme not wanting to give you staples or something? With the procedure I mentioned, they make two small incisions and send in two probe like devices and basically "scratch" up the outside of the lung. Think of it as taking a pot scrubber and rubbing your skin raw until flesh was exposed. Then when your lung is irritated like that, the outside of your lung will heal to your chest cavity. So now your lung isnt just freely expanding and contracting but actually connected to your chest cavity so theres no where for the air that causes phneumos to go. Hope that makes more sense. My chest felt tight to breath on that side for a while but you get used to it as you do all things, and now I can tell no difference. And I had the procedure 3 years ago, when I said 15 years, i meant that the drs told me that the procedure had a successful rate of the procedure lasting 15-20years before it may need a touch up or to be redone to avoid recurring phneumos!
I actually met the dr who gave me this advice when I had to go get evaluated for the transplant. I went to a small clinic in South Bend, IN. But I was sent to the University of Michigan in Ann Arbor to get evaluated. After getting the surgery I was so shocked and amazed at the knowledge and skill of the drs and clinics at the university of michigan that I immediatly switched my clinic to U of M and have never looked back. My old clinic was 20 minutes from home but now I travel 3 and a half hours every three months just to go to the U of M for my clinic.
Now heres some golden advice for you, that also sounds like you were hinting at this-
I used to be very passive when it came to disagreements I had with my dr. If I felt that I wasnt being listened to, or my opinions were going in one ear and out the other, I just sat back and did nothing and listened to the drs. But not Now! Im 6ft and 23year old male and I weighed 123lbs. I found on youtube that childrens memorial hospital were routinely giving people my age or younger feeding tubes to help them maintain their weight. I studied on this and I felt this was the best thing I could do for myself to maintain my weight and thus my health. I talked to my dr about it and he was against it. I pressed him and asked why? he gave me answers that were medically unrelated such as -"well most patients find it much to handle to have to deal with hooking the machine up every night" and so on. This pissed me off. If Im willing to get a surgical procedure and im being turned down not because of medical risks but bullshit vague answers Im not going to stand for that crap anymore. I had my whole family call him demanding answers that were actual medical risks that could back up his denial and he immediatly said fine and gave no answer. Now ive had my gtube for 3 weeks and have 5 extra lbs already for sticking up for myself.
So my advice to you- Listen to your drs. They do know more than us and they do have our best health in mind. BUT, if you feel that your dr isnt listening to you or hearing you out, or not understanding your side, and seems they wont spend the time to hear you out, or give you an explanation as to why they dont see things the same way as you- TALK TO ANOTHER DR. It doesnt hurt to get a second, third, fourth, or even fifth opinion if you feel your not getting your thoughts across. All drs are different. Some are cautious, some are smug, I had a dr that laughed at me when I said I think I had low testosterone and began mocking me saying that I was reciting the commercials on tv to him when I was stating the side effects of having low testosterone. But guess what? I went to a different dr, got tested, and had extremely low testosterone levels on two different areas. And for my age this was a medical problem that I now have under control. And that first dr is now eating crow!
Good luck with your health, If you ever have questions and need people to talk to, this forum is the best place. There are TONS of knowledgeable people here especially (Havoc), he seems like an encylopedia of all things health related not just cf. Hope this info helps you.
I actually met the dr who gave me this advice when I had to go get evaluated for the transplant. I went to a small clinic in South Bend, IN. But I was sent to the University of Michigan in Ann Arbor to get evaluated. After getting the surgery I was so shocked and amazed at the knowledge and skill of the drs and clinics at the university of michigan that I immediatly switched my clinic to U of M and have never looked back. My old clinic was 20 minutes from home but now I travel 3 and a half hours every three months just to go to the U of M for my clinic.
Now heres some golden advice for you, that also sounds like you were hinting at this-
I used to be very passive when it came to disagreements I had with my dr. If I felt that I wasnt being listened to, or my opinions were going in one ear and out the other, I just sat back and did nothing and listened to the drs. But not Now! Im 6ft and 23year old male and I weighed 123lbs. I found on youtube that childrens memorial hospital were routinely giving people my age or younger feeding tubes to help them maintain their weight. I studied on this and I felt this was the best thing I could do for myself to maintain my weight and thus my health. I talked to my dr about it and he was against it. I pressed him and asked why? he gave me answers that were medically unrelated such as -"well most patients find it much to handle to have to deal with hooking the machine up every night" and so on. This pissed me off. If Im willing to get a surgical procedure and im being turned down not because of medical risks but bullshit vague answers Im not going to stand for that crap anymore. I had my whole family call him demanding answers that were actual medical risks that could back up his denial and he immediatly said fine and gave no answer. Now ive had my gtube for 3 weeks and have 5 extra lbs already for sticking up for myself.
So my advice to you- Listen to your drs. They do know more than us and they do have our best health in mind. BUT, if you feel that your dr isnt listening to you or hearing you out, or not understanding your side, and seems they wont spend the time to hear you out, or give you an explanation as to why they dont see things the same way as you- TALK TO ANOTHER DR. It doesnt hurt to get a second, third, fourth, or even fifth opinion if you feel your not getting your thoughts across. All drs are different. Some are cautious, some are smug, I had a dr that laughed at me when I said I think I had low testosterone and began mocking me saying that I was reciting the commercials on tv to him when I was stating the side effects of having low testosterone. But guess what? I went to a different dr, got tested, and had extremely low testosterone levels on two different areas. And for my age this was a medical problem that I now have under control. And that first dr is now eating crow!
Good luck with your health, If you ever have questions and need people to talk to, this forum is the best place. There are TONS of knowledgeable people here especially (Havoc), he seems like an encylopedia of all things health related not just cf. Hope this info helps you.
nhaggard07
New member
Its alright to ask anything you want. I have learned that these forums here on this page is the biggest ace in your hand against your fight with cf. To answer your questions- you said something about theme not wanting to give you staples or something? With the procedure I mentioned, they make two small incisions and send in two probe like devices and basically "scratch" up the outside of the lung. Think of it as taking a pot scrubber and rubbing your skin raw until flesh was exposed. Then when your lung is irritated like that, the outside of your lung will heal to your chest cavity. So now your lung isnt just freely expanding and contracting but actually connected to your chest cavity so theres no where for the air that causes phneumos to go. Hope that makes more sense. My chest felt tight to breath on that side for a while but you get used to it as you do all things, and now I can tell no difference. And I had the procedure 3 years ago, when I said 15 years, i meant that the drs told me that the procedure had a successful rate of the procedure lasting 15-20years before it may need a touch up or to be redone to avoid recurring phneumos!
I actually met the dr who gave me this advice when I had to go get evaluated for the transplant. I went to a small clinic in South Bend, IN. But I was sent to the University of Michigan in Ann Arbor to get evaluated. After getting the surgery I was so shocked and amazed at the knowledge and skill of the drs and clinics at the university of michigan that I immediatly switched my clinic to U of M and have never looked back. My old clinic was 20 minutes from home but now I travel 3 and a half hours every three months just to go to the U of M for my clinic.
Now heres some golden advice for you, that also sounds like you were hinting at this-
I used to be very passive when it came to disagreements I had with my dr. If I felt that I wasnt being listened to, or my opinions were going in one ear and out the other, I just sat back and did nothing and listened to the drs. But not Now! Im 6ft and 23year old male and I weighed 123lbs. I found on youtube that childrens memorial hospital were routinely giving people my age or younger feeding tubes to help them maintain their weight. I studied on this and I felt this was the best thing I could do for myself to maintain my weight and thus my health. I talked to my dr about it and he was against it. I pressed him and asked why? he gave me answers that were medically unrelated such as -"well most patients find it much to handle to have to deal with hooking the machine up every night" and so on. This pissed me off. If Im willing to get a surgical procedure and im being turned down not because of medical risks but bullshit vague answers Im not going to stand for that crap anymore. I had my whole family call him demanding answers that were actual medical risks that could back up his denial and he immediatly said fine and gave no answer. Now ive had my gtube for 3 weeks and have 5 extra lbs already for sticking up for myself.
So my advice to you- Listen to your drs. They do know more than us and they do have our best health in mind. BUT, if you feel that your dr isnt listening to you or hearing you out, or not understanding your side, and seems they wont spend the time to hear you out, or give you an explanation as to why they dont see things the same way as you- TALK TO ANOTHER DR. It doesnt hurt to get a second, third, fourth, or even fifth opinion if you feel your not getting your thoughts across. All drs are different. Some are cautious, some are smug, I had a dr that laughed at me when I said I think I had low testosterone and began mocking me saying that I was reciting the commercials on tv to him when I was stating the side effects of having low testosterone. But guess what? I went to a different dr, got tested, and had extremely low testosterone levels on two different areas. And for my age this was a medical problem that I now have under control. And that first dr is now eating crow!
Good luck with your health, If you ever have questions and need people to talk to, this forum is the best place. There are TONS of knowledgeable people here especially (Havoc), he seems like an encylopedia of all things health related not just cf. Hope this info helps you.
I actually met the dr who gave me this advice when I had to go get evaluated for the transplant. I went to a small clinic in South Bend, IN. But I was sent to the University of Michigan in Ann Arbor to get evaluated. After getting the surgery I was so shocked and amazed at the knowledge and skill of the drs and clinics at the university of michigan that I immediatly switched my clinic to U of M and have never looked back. My old clinic was 20 minutes from home but now I travel 3 and a half hours every three months just to go to the U of M for my clinic.
Now heres some golden advice for you, that also sounds like you were hinting at this-
I used to be very passive when it came to disagreements I had with my dr. If I felt that I wasnt being listened to, or my opinions were going in one ear and out the other, I just sat back and did nothing and listened to the drs. But not Now! Im 6ft and 23year old male and I weighed 123lbs. I found on youtube that childrens memorial hospital were routinely giving people my age or younger feeding tubes to help them maintain their weight. I studied on this and I felt this was the best thing I could do for myself to maintain my weight and thus my health. I talked to my dr about it and he was against it. I pressed him and asked why? he gave me answers that were medically unrelated such as -"well most patients find it much to handle to have to deal with hooking the machine up every night" and so on. This pissed me off. If Im willing to get a surgical procedure and im being turned down not because of medical risks but bullshit vague answers Im not going to stand for that crap anymore. I had my whole family call him demanding answers that were actual medical risks that could back up his denial and he immediatly said fine and gave no answer. Now ive had my gtube for 3 weeks and have 5 extra lbs already for sticking up for myself.
So my advice to you- Listen to your drs. They do know more than us and they do have our best health in mind. BUT, if you feel that your dr isnt listening to you or hearing you out, or not understanding your side, and seems they wont spend the time to hear you out, or give you an explanation as to why they dont see things the same way as you- TALK TO ANOTHER DR. It doesnt hurt to get a second, third, fourth, or even fifth opinion if you feel your not getting your thoughts across. All drs are different. Some are cautious, some are smug, I had a dr that laughed at me when I said I think I had low testosterone and began mocking me saying that I was reciting the commercials on tv to him when I was stating the side effects of having low testosterone. But guess what? I went to a different dr, got tested, and had extremely low testosterone levels on two different areas. And for my age this was a medical problem that I now have under control. And that first dr is now eating crow!
Good luck with your health, If you ever have questions and need people to talk to, this forum is the best place. There are TONS of knowledgeable people here especially (Havoc), he seems like an encylopedia of all things health related not just cf. Hope this info helps you.