Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Becki, Can you do the IV's at home? Do you prefer to do them at home? I hope that you feel better very soon. How many doggies are you setting for? We have two Chahuahua's. They are cute, but not too bright. Take care of yourself, Gale > Hey > Well went to the doc today..I haven't been feeling well and sounded like > poopie again so I am starting on IV's again.He wonated me to go in but I am > doggie sitting and brad would have killed me if I left him with the dogs. > I am also starting on Bi-Pap....the order is in...and my vest gets here > Friday. > Anyways....thats it for now...I'll write more later. > > Becki > YOUR FAVORITE LilGooberGirl > 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 October 17, 2002 Report Share Posted October 17, 2002 Becki, Can you do the IV's at home? Do you prefer to do them at home? I hope that you feel better very soon. How many doggies are you setting for? We have two Chahuahua's. They are cute, but not too bright. Take care of yourself, Gale > Hey > Well went to the doc today..I haven't been feeling well and sounded like > poopie again so I am starting on IV's again.He wonated me to go in but I am > doggie sitting and brad would have killed me if I left him with the dogs. > I am also starting on Bi-Pap....the order is in...and my vest gets here > Friday. > Anyways....thats it for now...I'll write more later. > > Becki > YOUR FAVORITE LilGooberGirl > 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 October 17, 2002 Report Share Posted October 17, 2002 Becki, Can you do the IV's at home? Do you prefer to do them at home? I hope that you feel better very soon. How many doggies are you setting for? We have two Chahuahua's. They are cute, but not too bright. Take care of yourself, Gale > Hey > Well went to the doc today..I haven't been feeling well and sounded like > poopie again so I am starting on IV's again.He wonated me to go in but I am > doggie sitting and brad would have killed me if I left him with the dogs. > I am also starting on Bi-Pap....the order is in...and my vest gets here > Friday. > Anyways....thats it for now...I'll write more later. > > Becki > YOUR FAVORITE LilGooberGirl > 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 December 4, 2008 Report Share Posted December 4, 2008 CholangitisSuprt@... wrote: > > I am curious how they can diagnose lymphoma w/o a biopsy? Were they > able to determine throu other means like marrow biopsy? > In my case I had several things that may have contributed... Both CellCept and Azathioprine increase the risk of lymphoma (wich is why they took me off them), but what really triggered the PTLD was the Epstein Barr virus. I did have a couple biopsies, and it was after the second one that the word lymphoma started being used. They seem to have reevalutated that though now, and are saying it's not a true lymphoma, although there's still a chance it could develop into one. athan > Thanks > Shaul > PSC UC > > Sent via BlackBerry by AT&T > > ------------------------------------------------------------------------ > *From*: athan > *Date*: Wed, 03 Dec 2008 20:56:05 -0500 > *To*: > > *Subject*: Re: Update on me > > CholangitisSuprt@... wrote: > > > > Hi! > > Are you by any chance on Mercaptopurine? > > > > No... I've been on three different immune suppression drugs so far. > Prograf (which I'm still on but at a reduced dose), CellCept, which they > took me off in favor of Azathioprine (Imuran) because my Colitis was > flaring and it was supposed to help that. > > It did help the colitis, but since the PTLD started within a couple > months of starting it, and it increases the risk for lymphoma, they took > me off it and cut my Prograf dose in half. So now I'm just taking 3 mg > of prograf per day. I'm doing fine on that regimen, and my colitis is > still under control! > > athan > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.176 / Virus Database: 270.9.13/1827 - Release Date: 12/3/2008 5:41 PM > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 CholangitisSuprt@... wrote: > > I am curious how they can diagnose lymphoma w/o a biopsy? Were they > able to determine throu other means like marrow biopsy? > In my case I had several things that may have contributed... Both CellCept and Azathioprine increase the risk of lymphoma (wich is why they took me off them), but what really triggered the PTLD was the Epstein Barr virus. I did have a couple biopsies, and it was after the second one that the word lymphoma started being used. They seem to have reevalutated that though now, and are saying it's not a true lymphoma, although there's still a chance it could develop into one. athan > Thanks > Shaul > PSC UC > > Sent via BlackBerry by AT&T > > ------------------------------------------------------------------------ > *From*: athan > *Date*: Wed, 03 Dec 2008 20:56:05 -0500 > *To*: > > *Subject*: Re: Update on me > > CholangitisSuprt@... wrote: > > > > Hi! > > Are you by any chance on Mercaptopurine? > > > > No... I've been on three different immune suppression drugs so far. > Prograf (which I'm still on but at a reduced dose), CellCept, which they > took me off in favor of Azathioprine (Imuran) because my Colitis was > flaring and it was supposed to help that. > > It did help the colitis, but since the PTLD started within a couple > months of starting it, and it increases the risk for lymphoma, they took > me off it and cut my Prograf dose in half. So now I'm just taking 3 mg > of prograf per day. I'm doing fine on that regimen, and my colitis is > still under control! > > athan > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.176 / Virus Database: 270.9.13/1827 - Release Date: 12/3/2008 5:41 PM > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 CholangitisSuprt@... wrote: > > I am curious how they can diagnose lymphoma w/o a biopsy? Were they > able to determine throu other means like marrow biopsy? > In my case I had several things that may have contributed... Both CellCept and Azathioprine increase the risk of lymphoma (wich is why they took me off them), but what really triggered the PTLD was the Epstein Barr virus. I did have a couple biopsies, and it was after the second one that the word lymphoma started being used. They seem to have reevalutated that though now, and are saying it's not a true lymphoma, although there's still a chance it could develop into one. athan > Thanks > Shaul > PSC UC > > Sent via BlackBerry by AT&T > > ------------------------------------------------------------------------ > *From*: athan > *Date*: Wed, 03 Dec 2008 20:56:05 -0500 > *To*: > > *Subject*: Re: Update on me > > CholangitisSuprt@... wrote: > > > > Hi! > > Are you by any chance on Mercaptopurine? > > > > No... I've been on three different immune suppression drugs so far. > Prograf (which I'm still on but at a reduced dose), CellCept, which they > took me off in favor of Azathioprine (Imuran) because my Colitis was > flaring and it was supposed to help that. > > It did help the colitis, but since the PTLD started within a couple > months of starting it, and it increases the risk for lymphoma, they took > me off it and cut my Prograf dose in half. So now I'm just taking 3 mg > of prograf per day. I'm doing fine on that regimen, and my colitis is > still under control! > > athan > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.176 / Virus Database: 270.9.13/1827 - Release Date: 12/3/2008 5:41 PM > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 athon, Good news is always welcome! That is great news that the EB virus is undetectable and you are doing well. It is certainly interesting how these viruses can cause so many problems long term. CMV had that affect on me and ultimately caused my rejection episode. That's my assumption, not the doctors. Keep on.... Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 29 years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandson , granddaughter due 3/09 and 1 golden retriever Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 athon, Good news is always welcome! That is great news that the EB virus is undetectable and you are doing well. It is certainly interesting how these viruses can cause so many problems long term. CMV had that affect on me and ultimately caused my rejection episode. That's my assumption, not the doctors. Keep on.... Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 29 years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandson , granddaughter due 3/09 and 1 golden retriever Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Hi all! Just thought I'd give an update on what's going on with me, since I just got back from a major Dr. visit complete with CT scan yesterday. I saw Dr Raiford, (transplant Dr.) Dr Reddy (hematologist/oncologist) and Dr. Dummer (Infectious Disease), so I got a thorough looking at. The CT scan I had showed not much change (they were looking at the lymph nodes to see if the enlarged ones had grown or shrunk). Most of the lymph nodes were about the same but some had grown just slightly. That's not really good news but not as bad as it could be. Dr. Reddy wants me to have a few more rounds of Rituximab to see if that will help. I also got tested for a fungal lung infection (I've got a cough and fevers, and had an exposure to bird droppings a few weeks ago) but results aren't back on that yet. The CT scan also showed an enlarged thyroid, so they want to do an ultrasound of that, and Dr. Dummer heard a heart murmur which he's looking into to see if it's new or not. I guess at least I'm interesting to my doctors! athan Quote Link to comment Share on other sites More sharing options...
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