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#1
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OT Update on my sister in North Carolina (long)
I got this update from my sister yesterday:
We got the pathology results today. Absolutely NO cancer. It was most likely a "fungus" I picked up on my trip. It was only going to get worse if left alone. It had the potential to be life threatening for me. A portion of the lung the doc removed was dead. The "nodes" that were biopsied showed carbon in them, as if I had "black lung". If it could have been biopsied, I might have been able to take care of it with a few weeks in the hospital. However, it was not in a place that could have been biopsied. So it is good to have had the surgery. I do not understand all I know about all of this. I just know I am very grateful NOT to have had cancer. So, the news is good. I do not know if there is further treatment required but I don't think so. I go back for follow up on Feb.16. I am sure if there was more to this, the doc would have let me know. I am doing very well, but still in a lot of pain. I should be back to "normal" in 5 to 10 more weeks. What an eye opener this whole thing has been. and this today: It seems as if it is not over yet. My doctor called this afternoon to set me up with an appointment with an infectious disease pulmonary specialist. I will try to find a local doctor, but will have to be referred by Dr. XXXXX. This fungus is called histomplasmosis and needs to be treated or it will not go away. It could cause more granulomas or worse. It takes a very strong anti fungal called Amphoteracin B for a few days, to two weeks, in the hospital, and then an oral anti fungal for a TOTAL of 12 weeks of treatment. I do not know how involved the treatment will be. My appointment is on the 21st @ 4:00 pm in Raleigh. If we can find a "local" doctor, we might do that instead. At this point I am kind of disheartened not to have this be over and done with. Not a thing I can do, but to do what the doctor says. so, my sister is not quite finished with this thing yet. Her doctor is still saying this is probably something she picked up on her drive from North Carolina to Las Vegas a few months ago. I have no idea of how you can either get something like this or how you can avoid this. I just talked to my sis and we had a few laughs, we can almost always find something to laugh about and it's just a little more work lately. I could tell she was crying and then trying not to cry. It's hard to not be physically there but that is just not possible right now. At least she does have her quilt and she knows she has my love. Does anyone here have any idea of how to go about trying to find a more local doctor for her to see for this treatment? She needs to find an infectious disease pulmonary specialist in the area that's near or fairly close to Harkers Island. Jeanne, do you have any idea of how to do an internet search for this specialist in a certain area? Or anyone else, please let me know. Judie |
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#2
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OT Update on my sister in North Carolina (long)
I will keep you all in my prayers.
Take Care joanna Judie in Penfield NY wrote: I got this update from my sister yesterday: We got the pathology results today. Absolutely NO cancer. It was most likely a "fungus" I picked up on my trip. It was only going to get worse if left alone. It had the potential to be life threatening for me. A portion of the lung the doc removed was dead. The "nodes" that were biopsied showed carbon in them, as if I had "black lung". If it could have been biopsied, I might have been able to take care of it with a few weeks in the hospital. However, it was not in a place that could have been biopsied. So it is good to have had the surgery. I do not understand all I know about all of this. I just know I am very grateful NOT to have had cancer. So, the news is good. I do not know if there is further treatment required but I don't think so. I go back for follow up on Feb.16. I am sure if there was more to this, the doc would have let me know. I am doing very well, but still in a lot of pain. I should be back to "normal" in 5 to 10 more weeks. What an eye opener this whole thing has been. and this today: It seems as if it is not over yet. My doctor called this afternoon to set me up with an appointment with an infectious disease pulmonary specialist. I will try to find a local doctor, but will have to be referred by Dr. XXXXX. This fungus is called histomplasmosis and needs to be treated or it will not go away. It could cause more granulomas or worse. It takes a very strong anti fungal called Amphoteracin B for a few days, to two weeks, in the hospital, and then an oral anti fungal for a TOTAL of 12 weeks of treatment. I do not know how involved the treatment will be. My appointment is on the 21st @ 4:00 pm in Raleigh. If we can find a "local" doctor, we might do that instead. At this point I am kind of disheartened not to have this be over and done with. Not a thing I can do, but to do what the doctor says. so, my sister is not quite finished with this thing yet. Her doctor is still saying this is probably something she picked up on her drive from North Carolina to Las Vegas a few months ago. I have no idea of how you can either get something like this or how you can avoid this. I just talked to my sis and we had a few laughs, we can almost always find something to laugh about and it's just a little more work lately. I could tell she was crying and then trying not to cry. It's hard to not be physically there but that is just not possible right now. At least she does have her quilt and she knows she has my love. Does anyone here have any idea of how to go about trying to find a more local doctor for her to see for this treatment? She needs to find an infectious disease pulmonary specialist in the area that's near or fairly close to Harkers Island. Jeanne, do you have any idea of how to do an internet search for this specialist in a certain area? Or anyone else, please let me know. Judie |
#3
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OT Update on my sister in North Carolina (long)
Hi Judie,
I googled and found the following: http://www.umm.edu/ency/article/001082all.htm Did your sister go anywhere near this type of environment? Prayers and healing thoughts on the way. Di "Judie in Penfield NY" wrote in message ... I got this update from my sister yesterday: We got the pathology results today. Absolutely NO cancer. It was most likely a "fungus" I picked up on my trip. It was only going to get worse if left alone. It had the potential to be life threatening for me. A portion of the lung the doc removed was dead. The "nodes" that were biopsied showed carbon in them, as if I had "black lung". If it could have been biopsied, I might have been able to take care of it with a few weeks in the hospital. However, it was not in a place that could have been biopsied. So it is good to have had the surgery. I do not understand all I know about all of this. I just know I am very grateful NOT to have had cancer. So, the news is good. I do not know if there is further treatment required but I don't think so. I go back for follow up on Feb.16. I am sure if there was more to this, the doc would have let me know. I am doing very well, but still in a lot of pain. I should be back to "normal" in 5 to 10 more weeks. What an eye opener this whole thing has been. and this today: It seems as if it is not over yet. My doctor called this afternoon to set me up with an appointment with an infectious disease pulmonary specialist. I will try to find a local doctor, but will have to be referred by Dr. XXXXX. This fungus is called histomplasmosis and needs to be treated or it will not go away. It could cause more granulomas or worse. It takes a very strong anti fungal called Amphoteracin B for a few days, to two weeks, in the hospital, and then an oral anti fungal for a TOTAL of 12 weeks of treatment. I do not know how involved the treatment will be. My appointment is on the 21st @ 4:00 pm in Raleigh. If we can find a "local" doctor, we might do that instead. At this point I am kind of disheartened not to have this be over and done with. Not a thing I can do, but to do what the doctor says. so, my sister is not quite finished with this thing yet. Her doctor is still saying this is probably something she picked up on her drive from North Carolina to Las Vegas a few months ago. I have no idea of how you can either get something like this or how you can avoid this. I just talked to my sis and we had a few laughs, we can almost always find something to laugh about and it's just a little more work lately. I could tell she was crying and then trying not to cry. It's hard to not be physically there but that is just not possible right now. At least she does have her quilt and she knows she has my love. Does anyone here have any idea of how to go about trying to find a more local doctor for her to see for this treatment? She needs to find an infectious disease pulmonary specialist in the area that's near or fairly close to Harkers Island. Jeanne, do you have any idea of how to do an internet search for this specialist in a certain area? Or anyone else, please let me know. Judie |
#4
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OT Update on my sister in North Carolina (long)
DiMa wrote:
Hi Judie, I googled and found the following: http://www.umm.edu/ency/article/001082all.htm Did your sister go anywhere near this type of environment? Prayers and healing thoughts on the way. Di Hi Di, Thanks to both you and to Joanna for your prayers and healing thoughts, please keep them coming. Interesting article and a little different slant than the one my sister found. No, she hasn't been to the "bat cave", but we'll be laughing about that soon I know. I can just see what's his name, Batman and his sidekick Robin heading off to the bat cave in the bat mobile. And pretty sure the closest she's been to a chicken in years is the grocery store as my sister absolutely hates chicken. And pizza too. What she did was drive across the country, stopping at motels and gas stations and truck stops and just a few restaurants along the way. No exploring and not much fun I don't think since she made it in about 3 1/2 days. I think mostly just flat out driving and buying gas. She probably did pass a few construction zones and from what I have read so far this disease can be spread by disturbing the soil. We have San Joaquin Valley Fever in California and this sounds very similar to me in that it's spread by disturbing the soil. And that it affects the lungs. Judie |
#5
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OT Update on my sister in North Carolina (long)
Judie in Penfield NY wrote:
I got this update from my sister yesterday: We got the pathology results today. Absolutely NO cancer. It was most likely a "fungus" I picked up on my trip. .....snipped..... so, my sister is not quite finished with this thing yet. Her doctor is still saying this is probably something she picked up on her drive from North Carolina to Las Vegas a few months ago. I have no idea of how you can either get something like this or how you can avoid this. ....snipped.... Judie Julie, there is a disease you can get if you live in Lizard Land called Valley Fever. It can affect you anywhere from making you think you have the flu to putting you in hospital. I am one of the fortunate few who has never had it -- wouldn't have known this except they test for it when you are a blood donor! Anyway, It's likely that something similar might be in the desert areas around Las Vegas. As for finding a specialist, I'd start with Google and then Web M.D. and see if you can get any sort of referral that way. Your sister might actually try and contact someone at her insurance company and explain the problem. They might be able to recommend a pulmonary specialist who is in the area. Good luck to your DSis -- sending prayers, good vibes and kitty kisses to you all! CiaoMeow ^;;^ PAX, Tia Mary ^;;^ (RCTQ Queen of Kitties) Angels can't show their wings on earth but nothing was ever said about their whiskers! Visit my Photo albums at http://community.webshots.com/user/tiamary |
#6
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OT Update on my sister in North Carolina (long)
"Judie in Penfield NY" wrote in message ... I got this update from my sister yesterday: We got the pathology results today. Absolutely NO cancer. It was most likely a "fungus" I picked up on my trip. It was only going to get worse if left alone. It had the potential to be life threatening for me. A portion of the lung the doc removed was dead. The "nodes" that were biopsied showed carbon in them, as if I had "black lung". If it could have been biopsied, I might have been able to take care of it with a few weeks in the hospital. However, it was not in a place that could have been biopsied. So it is good to have had the surgery. I do not understand all I know about all of this. I just know I am very grateful NOT to have had cancer. So, the news is good. I do not know if there is further treatment required but I don't think so. I go back for follow up on Feb.16. I am sure if there was more to this, the doc would have let me know. I am doing very well, but still in a lot of pain. I should be back to "normal" in 5 to 10 more weeks. What an eye opener this whole thing has been. and this today: It seems as if it is not over yet. My doctor called this afternoon to set me up with an appointment with an infectious disease pulmonary specialist. I will try to find a local doctor, but will have to be referred by Dr. XXXXX. This fungus is called histomplasmosis and needs to be treated or it will not go away. It could cause more granulomas or worse. It takes a very strong anti fungal called Amphoteracin B for a few days, to two weeks, in the hospital, and then an oral anti fungal for a TOTAL of 12 weeks of treatment. I do not know how involved the treatment will be. My appointment is on the 21st @ 4:00 pm in Raleigh. If we can find a "local" doctor, we might do that instead. At this point I am kind of disheartened not to have this be over and done with. Not a thing I can do, but to do what the doctor says. so, my sister is not quite finished with this thing yet. Her doctor is still saying this is probably something she picked up on her drive from North Carolina to Las Vegas a few months ago. I have no idea of how you can either get something like this or how you can avoid this. I just talked to my sis and we had a few laughs, we can almost always find something to laugh about and it's just a little more work lately. I could tell she was crying and then trying not to cry. It's hard to not be physically there but that is just not possible right now. At least she does have her quilt and she knows she has my love. Does anyone here have any idea of how to go about trying to find a more local doctor for her to see for this treatment? She needs to find an infectious disease pulmonary specialist in the area that's near or fairly close to Harkers Island. Jeanne, do you have any idea of how to do an internet search for this specialist in a certain area? Or anyone else, please let me know. Judie Hi Judie, So glad that your sister has absolute confirmation that she had no cancer. That is excellent news. I can understand how tired your sister must be of the whole medical scene, but her doctor is being prudent by sending her to a specialist. I just looked up histoplasmosis on the CDC site, http://www.cdc.gov/nczved/dfbmd/dise...smosis_gi.html and it says in rare cases the fungus can disseminate throughout the body and then it becomes fatal. Me? I'm totally with your sister. I hate being at the mercy of doctors. But it does sound like the special attention is needed, and it is treatable. Please tell her next time you speak with that we're all pulling for her. -- Michelle in NV http://community.webshots.com/user/desert_quilter |
#7
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OT Update on my sister in North Carolina (long)
On Thu, 15 Jan 2009 20:01:07 -0500, Judie in Penfield NY
wrote: so, my sister is not quite finished with this thing yet. Her doctor is still saying this is probably something she picked up on her drive from North Carolina to Las Vegas a few months ago. I have no idea of how you can either get something like this or how you can avoid this. Mostly, stay away from bird or bat droppings, wind borne soil, and keep your immune system up... it's a fairly common disease in the midwest, but one that only occasionally gets to the form your sister's has taken. http://www.cdc.gov/nczved/dfbmd/dise...smosis_gi.html http://www.mayoclinic.com/health/histoplasmosis/DS00517 http://emedicine.medscape.com/article/299054-overview This, in my experience, is not a disease to mess around with in your sister's type... I'd be looking for the best, not necessarily the closest. Kay |
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