Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Did you have a positive sweat test when you were tested for CF? Cheryl A Lost Email Update Hey All I wanted to re-update something that I think got lost in email land....lol In January they offically changed my Cf diagnosis to another similiar genetic disease (why do genetic disease have to be such a pain in the butt).Anyways it is called Shwachman Diamond Syndrome. Basically its a problem in the bone marrow and stuff they symptoms are Pancraetic Insuffiency ( 2nd leading cause of pancreatic insuffiency in kids next to CF) chronic infections, joint problems, liver problems, yada yada yada The kids who have it really bad are prone to cancer and aplastic anemia although, SDS patients are allows prone. So I will have the wonderful pleasure of having bone marrow biopsies every 6 months after transplant and before. What happens in my case are the infection fighting cells in the body have a bad sense of direction and get lost so that you have no way to fight something as simple as the common cold. I got so many lung infections that I developed bronchiectasis and all that good stuff. you get the same bugs in SDS b/c of the lack of infection fighting ability and at times your Nutrifil , its early so I can't spell, are low so that lets bacteria in. Anyways, the rognosis is about the same as CF and the same precautions and problems found in CF post-tx are the same as in SDS. I also have to be careful b/c my liver is enlarged.... But this is why I have such severe hip disease. My hips never formed right in the socket to ..well its hard to describe but the muscles and ligaments and tendons never formed right around the bones....long story. Some get this and some don't. the Skater Hamilton has this disorder. They thought he had CF but changed the diagnosis on him when he was 3 yo. This is why he is so small and had cancer back a few years ago. He is considered very mild.... Anyways....if you want more info I have a transplant website at : www.mybreathingjourneyhome.freeservers.com I really want to continue on the Cf email lists just b/c of the lung problems I have are identical to Cf and the digestive, yada yada yada. As the doc said same issues different mechanism of getting there..... Shwachman Diamond Syndrome http://www.shwachman-diamond.org/ Becki Life is not measured by the number of breaths we take, but by the moments that take our breath away. Listed for Lungs 1/14/04 at Mayo Clinic ville,Fla. YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Stay Becki, we would miss our Goober Girl.... :-) Dawn mom of 4, 8 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Hey, Becki; in the usa, the score used to measure a cf patients progress or lack thereof is called the Schwachman score; I am biased; I think you belong here, and (do not faint!) some people have both. I vote to have you stay with us--and I hope they are wrong; besides I had to have four joints totally re- placed because they never formed right and they RULE OUT SCHWACHMAN- DIAMOND SYNDROME anyway--I vote that you are one of us! n Rojas, who seldom believes it when they start messing around with long-standing diagnoses! A Lost Email Update Hey All I wanted to re-update something that I think got lost in email land....lol In January they offically changed my Cf diagnosis to another similiar genetic disease (why do genetic disease have to be such a pain in the butt).Anyways it is called Shwachman Diamond Syndrome. Basically its a problem in the bone marrow and stuff they symptoms are Pancraetic Insuffiency ( 2nd leading cause of pancreatic insuffiency in kids next to CF) chronic infections, joint problems, liver problems, yada yada yada The kids who have it really bad are prone to cancer and aplastic anemia although, SDS patients are allows prone. So I will have the wonderful pleasure of having bone marrow biopsies every 6 months after transplant and before. What happens in my case are the infection fighting cells in the body have a bad sense of direction and get lost so that you have no way to fight something as simple as the common cold. I got so many lung infections that I developed bronchiectasis and all that good stuff. you get the same bugs in SDS b/c of the lack of infection fighting ability and at times your Nutrifil , its early so I can't spell, are low so that lets bacteria in. Anyways, the rognosis is about the same as CF and the same precautions and problems found in CF post-tx are the same as in SDS. I also have to be careful b/c my liver is enlarged.... But this is why I have such severe hip disease. My hips never formed right in the socket to ..well its hard to describe but the muscles and ligaments and tendons never formed right around the bones....long story. Some get this and some don't. the Skater Hamilton has this disorder. They thought he had CF but changed the diagnosis on him when he was 3 yo. This is why he is so small and had cancer back a few years ago. He is considered very mild.... Anyways....if you want more info I have a transplant website at : www.mybreathingjourneyhome.freeservers.com I really want to continue on the Cf email lists just b/c of the lung problems I have are identical to Cf and the digestive, yada yada yada. As the doc said same issues different mechanism of getting there..... Shwachman Diamond Syndrome http://www.shwachman-diamond.org/ Becki Life is not measured by the number of breaths we take, but by the moments that take our breath away. Listed for Lungs 1/14/04 at Mayo Clinic ville,Fla. YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Becki, You better stay with us! I would be very upset if we didn't get to hear all about your rehab, transplant and recovery!!!!! I think we all would loose out if you left our list, just because you do not have CF. A Lost Email Update Hey All I wanted to re-update something that I think got lost in email land....lol In January they offically changed my Cf diagnosis to another similiar genetic disease (why do genetic disease have to be such a pain in the butt).Anyways it is called Shwachman Diamond Syndrome. Basically its a problem in the bone marrow and stuff they symptoms are Pancraetic Insuffiency ( 2nd leading cause of pancreatic insuffiency in kids next to CF) chronic infections, joint problems, liver problems, yada yada yada The kids who have it really bad are prone to cancer and aplastic anemia although, SDS patients are allows prone. So I will have the wonderful pleasure of having bone marrow biopsies every 6 months after transplant and before. What happens in my case are the infection fighting cells in the body have a bad sense of direction and get lost so that you have no way to fight something as simple as the common cold. I got so many lung infections that I developed bronchiectasis and all that good stuff. you get the same bugs in SDS b/c of the lack of infection fighting ability and at times your Nutrifil , its early so I can't spell, are low so that lets bacteria in. Anyways, the rognosis is about the same as CF and the same precautions and problems found in CF post-tx are the same as in SDS. I also have to be careful b/c my liver is enlarged.... But this is why I have such severe hip disease. My hips never formed right in the socket to ..well its hard to describe but the muscles and ligaments and tendons never formed right around the bones....long story. Some get this and some don't. the Skater Hamilton has this disorder. They thought he had CF but changed the diagnosis on him when he was 3 yo. This is why he is so small and had cancer back a few years ago. He is considered very mild.... Anyways....if you want more info I have a transplant website at : www.mybreathingjourneyhome.freeservers.com I really want to continue on the Cf email lists just b/c of the lung problems I have are identical to Cf and the digestive, yada yada yada. As the doc said same issues different mechanism of getting there..... Shwachman Diamond Syndrome http://www.shwachman-diamond.org/<http://www.shwachman-diamond.org/> Becki Life is not measured by the number of breaths we take, but by the moments that take our breath away. Listed for Lungs 1/14/04 at Mayo Clinic ville,Fla. YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/<http://groups.yahoo.com/gro\ up/InterstitialLung_Kids/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 I second this. Becki you aren't thinking of leaving us are you? Please say no! love, M Re: A Lost Email Update Becki, You better stay with us! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Becki, as I understood it, you were asking permission to stay even though for now they have called it Schwachman-Diamond Syndrome (yes, the cf Harry Schwachman, M.D.!). I have not seen any one telling you that you had to go! No big, red alerts or anything! Besides your posts keep coming through! If in doubt, contact our moderator, Albright, e-mail ma8169@..., and ask her--I do not expect any resounding thuds! Love, n, joining in encouraging you to stay! And if I have fouled up the address, then it is: ma8169@... ---see which one works! M. Re: A Lost Email Update Becki, You better stay with us! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Becky, This must have been a REAL BIG surprise! How is your exercise program going? Gale > Hey All > I wanted to re-update something that I think got lost in email land....lol > In January they offically changed my Cf diagnosis to another similiar genetic > disease (why do genetic disease have to be such a pain in the butt).Anyways > it is called Shwachman Diamond Syndrome. Basically its a problem in the bone > marrow and stuff they symptoms are Pancraetic Insuffiency ( 2nd leading cause of > pancreatic insuffiency in kids next to CF) chronic infections, joint > problems, liver problems, yada yada yada > The kids who have it really bad are prone to cancer and aplastic anemia > although, SDS patients are allows prone. So I will have the wonderful pleasure of > having bone marrow biopsies every 6 months after transplant and before. > What happens in my case are the infection fighting cells in the body have a > bad sense of direction and get lost so that you have no way to fight something > as simple as the common cold. I got so many lung infections that I developed > bronchiectasis and all that good stuff. > you get the same bugs in SDS b/c of the lack of infection fighting ability > and at times your Nutrifil , its early so I can't spell, are low so that lets > bacteria in. > Anyways, the rognosis is about the same as CF and the same precautions and > problems found in CF post-tx are the same as in SDS. > I also have to be careful b/c my liver is enlarged.... > But this is why I have such severe hip disease. My hips never formed right in > the socket to ..well its hard to describe but the muscles and ligaments and > tendons never formed right around the bones....long story. Some get this and > some don't. > the Skater Hamilton has this disorder. They thought he had CF but > changed the diagnosis on him when he was 3 yo. This is why he is so small and had > cancer back a few years ago. He is considered very mild.... > Anyways....if you want more info I have a transplant website at : > www.mybreathingjourneyhome.freeservers.com > > I really want to continue on the Cf email lists just b/c of the lung problems > I have are identical to Cf and the digestive, yada yada yada. As the doc said > same issues different mechanism of getting there..... > > > Shwachman Diamond Syndrome > http://www.shwachman-diamond.org/ > > > > Becki > Life is not measured by the number of breaths we take, but by the moments > that take our breath away. > Listed for Lungs 1/14/04 > at > Mayo Clinic ville,Fla. > YOUNGLUNG EMAIL SUPPORT LIST > www.topica.com/lists/younglung > Pediatric Interstitial Lung Disease Society > http://groups.yahoo.com/group/InterstitialLung_Kids/ > > > > > > Quote Link to comment Share on other sites More sharing options...
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