Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 Best wishes to you and your family- you will be added to our prayer list Sue Petrelli kristinsmith <kristinsmith@...> wrote: Hi Everyone, I was wanting to share that we have decided to move forward with the bone marrow transplant at this time. We are tentatively planning Conner's transplant for late spring/early summer. We are still looking for possible donors, but we were able to come up with some pretty close matches. Our hope is that Conner will be cured of his immune deficiency, but we know there aren't any guarantees. It was a tough decision, but something that our immuno, the docs at the NIH, and the transplant doc feels to be in Conner's best interest. They feel that his life expectancy will be significantly reduced without it (thanks to the NEMO deficiency). I also wanted to let you all know that I'm going " no email " for awhile, I just can't seem to keep up with it at the moment (I'm in too many groups these days!). If anyone would like to email me privately, feel free to do so - or drop by our website for updates: www.cure4conner.org Take care, Mom to Conner (12, NEMO and MBL Deficiency, Hayden (12, MBL Deficiency) Evan (12, MBL Deficiency) and Kelsey - (10, NEMO - expressive carrier and MBL Deficiency) Please visit us at www.cure4conner.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 : The decision to move forward must have been very hard-our prayers are with to give you're the strength you need to get through this. - mom to , 5yrs old, CT ________________________________ From: [mailto: ] On Behalf Of Sue Petrelli Sent: Friday, January 19, 2007 10:09 AM Subject: Re: Transplant Best wishes to you and your family- you will be added to our prayer list Sue Petrelli kristinsmith <kristinsmith@... <mailto:kristinsmith%40insightbb.com> > wrote: Hi Everyone, I was wanting to share that we have decided to move forward with the bone marrow transplant at this time. We are tentatively planning Conner's transplant for late spring/early summer. We are still looking for possible donors, but we were able to come up with some pretty close matches. Our hope is that Conner will be cured of his immune deficiency, but we know there aren't any guarantees. It was a tough decision, but something that our immuno, the docs at the NIH, and the transplant doc feels to be in Conner's best interest. They feel that his life expectancy will be significantly reduced without it (thanks to the NEMO deficiency). I also wanted to let you all know that I'm going " no email " for awhile, I just can't seem to keep up with it at the moment (I'm in too many groups these days!). If anyone would like to email me privately, feel free to do so - or drop by our website for updates: www.cure4conner.org Take care, Mom to Conner (12, NEMO and MBL Deficiency, Hayden (12, MBL Deficiency) Evan (12, MBL Deficiency) and Kelsey - (10, NEMO - expressive carrier and MBL Deficiency) Please visit us at www.cure4conner.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 : The decision to move forward must have been very hard-our prayers are with to give you're the strength you need to get through this. - mom to , 5yrs old, CT ________________________________ From: [mailto: ] On Behalf Of Sue Petrelli Sent: Friday, January 19, 2007 10:09 AM Subject: Re: Transplant Best wishes to you and your family- you will be added to our prayer list Sue Petrelli kristinsmith <kristinsmith@... <mailto:kristinsmith%40insightbb.com> > wrote: Hi Everyone, I was wanting to share that we have decided to move forward with the bone marrow transplant at this time. We are tentatively planning Conner's transplant for late spring/early summer. We are still looking for possible donors, but we were able to come up with some pretty close matches. Our hope is that Conner will be cured of his immune deficiency, but we know there aren't any guarantees. It was a tough decision, but something that our immuno, the docs at the NIH, and the transplant doc feels to be in Conner's best interest. They feel that his life expectancy will be significantly reduced without it (thanks to the NEMO deficiency). I also wanted to let you all know that I'm going " no email " for awhile, I just can't seem to keep up with it at the moment (I'm in too many groups these days!). If anyone would like to email me privately, feel free to do so - or drop by our website for updates: www.cure4conner.org Take care, Mom to Conner (12, NEMO and MBL Deficiency, Hayden (12, MBL Deficiency) Evan (12, MBL Deficiency) and Kelsey - (10, NEMO - expressive carrier and MBL Deficiency) Please visit us at www.cure4conner.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 , my thoughts are with you, Conner, and your family at this time. I pray that they will find the right match for Conner, that he will respond well to the BMT and be cured of his immune deficiency. * Sending prayers your way, Mom to , 16 *although you are taking a break from e-mail for a time, I hope you will keep us posted as the time of the transplant draws near. kristinsmith <kristinsmith@...> wrote: Hi Everyone, I was wanting to share that we have decided to move forward with the bone marrow transplant at this time. We are tentatively planning Conner's transplant for late spring/early summer. We are still looking for possible donors, but we were able to come up with some pretty close matches. Our hope is that Conner will be cured of his immune deficiency, but we know there aren't any guarantees. It was a tough decision, but something that our immuno, the docs at the NIH, and the transplant doc feels to be in Conner's best interest. They feel that his life expectancy will be significantly reduced without it (thanks to the NEMO deficiency). I also wanted to let you all know that I'm going " no email " for awhile, I just can't seem to keep up with it at the moment (I'm in too many groups these days!). If anyone would like to email me privately, feel free to do so - or drop by our website for updates: www.cure4conner.org Take care, Mom to Conner (12, NEMO and MBL Deficiency, Hayden (12, MBL Deficiency) Evan (12, MBL Deficiency) and Kelsey - (10, NEMO - expressive carrier and MBL Deficiency) Please visit us at www.cure4conner.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 , you have been a great support,, I wish the both of you well.. my thoughts and prayers are with you.. Kathleen and Conan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2007 Report Share Posted November 14, 2007 Thank you for this information. I think some times we become to complacent about our organs and think that once we get a transplant all will be perfect. I know this story is rare but it is something we should think about. I personally have gone through the crisis of whether to continue the meds or just give up because of all the side affects. We all make decisions everyday but this is a decision that can save our lives. I think I made the right decision, it's 10yrs and I'm still here causing trouble.lol the WV hillbilly LOVE IS IN ALL THINGS AND IN ALL THINGS IS LOVE [ ] Transplant Today's New York Times has an article about four people who developed HIV and Hep C after organ transplants from a single donor. Before donation, testing didn't show the virus in the organs, probably because virus transmission was too recent for the test used to detect. The only use for this sad information is to remind us of the importance of sticking with our treatment, never becoming complacent and deciding to skip. Donated organs are very scarce, and their safety can't be assured. We must do all we can to keep our own! This may seem to be obvious, but many years ago, I read a post from a young man who said he was stopping his AIH treatment because he was in love and the medication gave him pimples. Oh, dear. Harper ************ ********* ********* ******** See what's new at http://www.aol. com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2007 Report Share Posted November 15, 2007 Nah, you only have 49 to go, remember! Again, congratulations and good luck! Harper ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2007 Report Share Posted November 15, 2007 Amen to that Harper! It is TOTALLY important to maintain a healthy lifestyle in order to keep our livers in the best condition that we are able to maintain! As a side, I saw my GI yesterday and she is VERY happy that my labs are holding. It has been one year since going off the 6MP so I am in remission. The only thing we DID discuss, is that I refuse to return to the prednisone, so that plan is to monitor closely my labs every 2 months to make certain I am not slipping. Then, within the year, I iwll have a biopsy to see excatly what is going on with the liver. Then, the Doctor will probably put me back on a low dose of the 6MP so I won't crash and flair and end up on prednisone. AFter losing all of this weight, I just am not willing to put the weight back on. If push DOES come to shove with the prednisone, I will take it, but it will be the last resort. I have fought hard to lose these 101 pounds and still have 50 to go and I just don't want to go back to what I was! Overall, I am very pleased with the results! Debby [ ] Transplant Today's New York Times has an article about four people who developed HIV and Hep C after organ transplants from a single donor. Before donation, testing didn't show the virus in the organs, probably because virus transmission was too recent for the test used to detect. The only use for this sad information is to remind us of the importance of sticking with our treatment, never becoming complacent and deciding to skip. Donated organs are very scarce, and their safety can't be assured. We must do all we can to keep our own! This may seem to be obvious, but many years ago, I read a post from a young man who said he was stopping his AIH treatment because he was in love and the medication gave him pimples. Oh, dear. Harper ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2007 Report Share Posted November 15, 2007 LOL!!!! Yes, but you must remember I ONLY teach first grade. We just learn to add and subtract to 20! Debby Re: [ ] Transplant Nah, you only have 49 to go, remember! Again, congratulations and good luck! Harper ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 Joann, It is so goo to hear you are doing well after the transplant. And Life is good again. Success stories are important for us to know about. Thanks for sharing. Clara from OR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 Joanne, Happy Transplant Day to you! I can hardly believe it has been 4 years already. Seems like yesterday that you had our love and prayers for all the problems you had at that time. Way To Go. Also, thank you for posting the 2 digests from the transplant group. How fun to see those names again (you can tell I've been around a REALLY long time. Some brought back memories of all they went through before their TX, and it's wonderful to catch up on how well they are doing now. It gives hope to those who may need to go through the process down the road. Hugs and Happy Holidays to all of you, Jeannette OR PBC/AIH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2008 Report Share Posted August 3, 2008 Hi , Are you craving " anything raw " yet ;-) I was amazed at how bad I wanted a salad. Then when I hit 100 days and could have had a salad I had some other issues pop up and had to wait another two weeks. Hang in there. I'm 8 years and 2 months out. Trust me, it's worth every miserable minute of what you are dealing with now. There will be speed bumps, so be prepared and don't get disheartened. Sue Bunte --- Koffman <briankoffman@...> wrote: > Friends, > I would add to the discussion that for some it makes > sense to consider > a transplant before all your other options run out. > It is important to > be relatively healthy going in and it really helps > if you can get to > CR. Both of these get less and less likely after > more and more > treatments. A transplant is, as of today, the only > shot at a cure. I > am Day 32 + post transplant and doing well. > , 57 yr family doc & father of 4, dx 9/05 del > 11q unmutated, > CD38+, ITP 9/06 eventually failed steroids, IVIG , > Rituxan and > splenectomy controlled w cyclosporin A Rituxan > combo. CLL in old > school CR. RIC MUD HSCT July 1/08 doing well see > http://bkoffman.blogspot.com/ > > Sue Bunte The greatness of a nation and it's moral progress may be judged by the way it's animals are treated. Mahatma Ghandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick.  BYrd     http://www.caringbridge.org/visit/deanabyrd         ________________________________________________________________________________\ ___________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 does she take gammaglobulin infusions? Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ________________________________ From: Mrs. Byrd <kitkat32308@...> Sent: Tue, February 16, 2010 9:42:54 PM Subject: Re: " transplant " I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick. BYrd http://www.caringbridge.org/visit/deanabyrd ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 does she take gammaglobulin infusions? Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ________________________________ From: Mrs. Byrd <kitkat32308@...> Sent: Tue, February 16, 2010 9:42:54 PM Subject: Re: " transplant " I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick. BYrd http://www.caringbridge.org/visit/deanabyrd ____________ _________ _________ _________ _________ _________ _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 She takes IVIG Privigin monthly she was on subq vivaglobin until dec. but she needs stronger meds so IVIG again. On Tue Feb 16th, 2010 10:37 PM EST Ursula Holleman wrote: >does she take gammaglobulin infusions? > Ursula >Mom to (17) and Macey (14) >http://www.caringbridge.org/visit/maceyholleman > > > > >________________________________ >From: Mrs. Byrd <kitkat32308@...> > >Sent: Tue, February 16, 2010 9:42:54 PM >Subject: Re: " transplant " > > >I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick. > > > BYrd > >http://www.caringbridge.org/visit/deanabyrd > >____________ _________ _________ _________ _________ _________ _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 if subq maintains a more consistent level and there are no troughs why do they think the IV route is a " stronger " dose? Macey's IVIG dose was 30 gms. every 3 weeks. but her levels stayed around 800 right before each repeat dose. With her on 8 gms per week (32 per month due to a couple of grams being lost in the subq tissue) she stays at around 1000-1100 every week and has no " down " spells. Have they tested your daughters T-cell system lately? Running a cellular profile might tell you if her PID is progressing and taking on a new component. If it is only an antibody deficiency and she's on gammaglobulin then she should be covered. If exposure to crowds puts her at risk she might need a new workup. Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ________________________________ From: Mrs. Byrd <kitkat32308@...> Sent: Tue, February 16, 2010 10:50:41 PM Subject: Re: " transplant " She takes IVIG Privigin monthly she was on subq vivaglobin until dec. but she needs stronger meds so IVIG again. On Tue Feb 16th, 2010 10:37 PM EST Ursula Holleman wrote: >does she take gammaglobulin infusions? > Ursula >Mom to (17) and Macey (14) >http://www.caringbridge.org/visit/maceyholleman > > > > >___________ _________ _________ ___ >From: Mrs. Byrd <kitkat32308> >groups (DOT) com >Sent: Tue, February 16, 2010 9:42:54 PM >Subject: Re: " transplant " > > >I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick. > > > BYrd > >http://www.caringbridge.org/visit/deanabyrd > >___________ _ _________ _________ _________ _________ _________ _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 if subq maintains a more consistent level and there are no troughs why do they think the IV route is a " stronger " dose? Macey's IVIG dose was 30 gms. every 3 weeks. but her levels stayed around 800 right before each repeat dose. With her on 8 gms per week (32 per month due to a couple of grams being lost in the subq tissue) she stays at around 1000-1100 every week and has no " down " spells. Have they tested your daughters T-cell system lately? Running a cellular profile might tell you if her PID is progressing and taking on a new component. If it is only an antibody deficiency and she's on gammaglobulin then she should be covered. If exposure to crowds puts her at risk she might need a new workup. Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ________________________________ From: Mrs. Byrd <kitkat32308@...> Sent: Tue, February 16, 2010 10:50:41 PM Subject: Re: " transplant " She takes IVIG Privigin monthly she was on subq vivaglobin until dec. but she needs stronger meds so IVIG again. On Tue Feb 16th, 2010 10:37 PM EST Ursula Holleman wrote: >does she take gammaglobulin infusions? > Ursula >Mom to (17) and Macey (14) >http://www.caringbridge.org/visit/maceyholleman > > > > >___________ _________ _________ ___ >From: Mrs. Byrd <kitkat32308> >groups (DOT) com >Sent: Tue, February 16, 2010 9:42:54 PM >Subject: Re: " transplant " > > >I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick. > > > BYrd > >http://www.caringbridge.org/visit/deanabyrd > >___________ _ _________ _________ _________ _________ _________ _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 She has a T-Cell deficiency with sub class IGG & IGA deficiency. The sub q worked i mean she still got sick but not as often. BUt she built up alot of scar tissue and she was getting depressed from taking it so often. The Dr. ran her IG levels last week and we just haven't gotten them back yet. They think she has IRAK-4 Deficiency but the Moddell foundation is studing her blood to see exactly what all her defiecincies are. Yes every single time she goes in crowds she gets sick. Sometimes even with a mask. So school is a battle to. We go between homeschooling to school. I am just trying to find some even ground to stand on with her. She has gotten so sad lately. Always asking why me  BYrd     http://www.caringbridge.org/visit/deanabyrd         ________________________________________________________________________________\ ___________________ ________________________________ From: Ursula Holleman <uahollem@...> Sent: Tue, February 16, 2010 10:55:41 PM Subject: Re: " transplant " if subq maintains a more consistent level and there are no troughs why do they think the IV route is a " stronger " dose? Macey's IVIG dose was 30 gms. every 3 weeks. but her levels stayed around 800 right before each repeat dose. With her on 8 gms per week (32 per month due to a couple of grams being lost in the subq tissue) she stays at around 1000-1100 every week and has no " down " spells. Have they tested your daughters T-cell system lately? Running a cellular profile might tell you if her PID is progressing and taking on a new component. If it is only an antibody deficiency and she's on gammaglobulin then she should be covered. If exposure to crowds puts her at risk she might need a new workup. Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ________________________________ From: Mrs. Byrd <kitkat32308@...> Sent: Tue, February 16, 2010 10:50:41 PM Subject: Re: " transplant "  She takes IVIG Privigin monthly she was on subq vivaglobin until dec. but she needs stronger meds so IVIG again. On Tue Feb 16th, 2010 10:37 PM EST Ursula Holleman wrote: >does she take gammaglobulin infusions? > Ursula >Mom to (17) and Macey (14) >http://www.caringbridge.org/visit/maceyholleman > > > > >___________ _________ _________ ___ >From: Mrs. Byrd <kitkat32308> >groups (DOT) com >Sent: Tue, February 16, 2010 9:42:54 PM >Subject: Re: " transplant " > > >I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick. > > > BYrd > >http://www.caringbridge.org/visit/deanabyrd > >___________ _ _________ _________ _________ _________ _________ _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 She has a T-Cell deficiency with sub class IGG & IGA deficiency. The sub q worked i mean she still got sick but not as often. BUt she built up alot of scar tissue and she was getting depressed from taking it so often. The Dr. ran her IG levels last week and we just haven't gotten them back yet. They think she has IRAK-4 Deficiency but the Moddell foundation is studing her blood to see exactly what all her defiecincies are. Yes every single time she goes in crowds she gets sick. Sometimes even with a mask. So school is a battle to. We go between homeschooling to school. I am just trying to find some even ground to stand on with her. She has gotten so sad lately. Always asking why me  BYrd     http://www.caringbridge.org/visit/deanabyrd         ________________________________________________________________________________\ ___________________ ________________________________ From: Ursula Holleman <uahollem@...> Sent: Tue, February 16, 2010 10:55:41 PM Subject: Re: " transplant " if subq maintains a more consistent level and there are no troughs why do they think the IV route is a " stronger " dose? Macey's IVIG dose was 30 gms. every 3 weeks. but her levels stayed around 800 right before each repeat dose. With her on 8 gms per week (32 per month due to a couple of grams being lost in the subq tissue) she stays at around 1000-1100 every week and has no " down " spells. Have they tested your daughters T-cell system lately? Running a cellular profile might tell you if her PID is progressing and taking on a new component. If it is only an antibody deficiency and she's on gammaglobulin then she should be covered. If exposure to crowds puts her at risk she might need a new workup. Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ________________________________ From: Mrs. Byrd <kitkat32308@...> Sent: Tue, February 16, 2010 10:50:41 PM Subject: Re: " transplant "  She takes IVIG Privigin monthly she was on subq vivaglobin until dec. but she needs stronger meds so IVIG again. On Tue Feb 16th, 2010 10:37 PM EST Ursula Holleman wrote: >does she take gammaglobulin infusions? > Ursula >Mom to (17) and Macey (14) >http://www.caringbridge.org/visit/maceyholleman > > > > >___________ _________ _________ ___ >From: Mrs. Byrd <kitkat32308> >groups (DOT) com >Sent: Tue, February 16, 2010 9:42:54 PM >Subject: Re: " transplant " > > >I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick. > > > BYrd > >http://www.caringbridge.org/visit/deanabyrd > >___________ _ _________ _________ _________ _________ _________ _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 Were in the same position including the scar tissue issue. We figured out a trick about the scar tissue thing though that might help you. has to be laying down the entire scig, not at an incline but flat on her back (we put on a movie). If a bubble forms I can almost guarantee you she will have the scar tissue/residue issue (that little lump thing that takes for ever to go away). If we go slow (set the pump to 40) and we don't usually get the lumps. She doesn't like the weekly schedule either but she stays healthier on it so I insist on it. ________________________________ From: Mrs. Byrd <kitkat32308@...> Sent: Tue, February 16, 2010 8:10:08 PM Subject: Re: " transplant " She has a T-Cell deficiency with sub class IGG & IGA deficiency. The sub q worked i mean she still got sick but not as often. BUt she built up alot of scar tissue and she was getting depressed from taking it so often. The Dr. ran her IG levels last week and we just haven't gotten them back yet. They think she has IRAK-4 Deficiency but the Moddell foundation is studing her blood to see exactly what all her defiecincies are. Yes every single time she goes in crowds she gets sick. Sometimes even with a mask. So school is a battle to. We go between homeschooling to school. I am just trying to find some even ground to stand on with her. She has gotten so sad lately. Always asking why me BYrd http://www.caringbridge.org/visit/deanabyrd ________________________________________________________________________________\ ___________________ ________________________________ From: Ursula Holleman <uahollem@...> Sent: Tue, February 16, 2010 10:55:41 PM Subject: Re: " transplant " if subq maintains a more consistent level and there are no troughs why do they think the IV route is a " stronger " dose? Macey's IVIG dose was 30 gms. every 3 weeks. but her levels stayed around 800 right before each repeat dose. With her on 8 gms per week (32 per month due to a couple of grams being lost in the subq tissue) she stays at around 1000-1100 every week and has no " down " spells. Have they tested your daughters T-cell system lately? Running a cellular profile might tell you if her PID is progressing and taking on a new component. If it is only an antibody deficiency and she's on gammaglobulin then she should be covered. If exposure to crowds puts her at risk she might need a new workup. Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ________________________________ From: Mrs. Byrd <kitkat32308@...> Sent: Tue, February 16, 2010 10:50:41 PM Subject: Re: " transplant " She takes IVIG Privigin monthly she was on subq vivaglobin until dec. but she needs stronger meds so IVIG again. On Tue Feb 16th, 2010 10:37 PM EST Ursula Holleman wrote: >does she take gammaglobulin infusions? > Ursula >Mom to (17) and Macey (14) >http://www.caringbridge.org/visit/maceyholleman > > > > >___________ _________ _________ ___ >From: Mrs. Byrd <kitkat32308> >groups (DOT) com >Sent: Tue, February 16, 2010 9:42:54 PM >Subject: Re: " transplant " > > >I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick. > > > BYrd > >http://www.caringbridge.org/visit/deanabyrd > >___________ _ _________ _________ _________ _________ _________ _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 Our experience is the same. The length of time that IV gamma globulin stays in the system is only 23 days so a once of month infusion will not last in most cases. For us SUBQ has been A HUGE improvement. We do 30grams per months as well. My son is 14 and he does it weekly as well and stays at about 1100. He was doing a higher dose with IV every 3 weeks but on the 3rd week he felt terrible. ANd his levels were at only about 800-900. We are VERY happy with subQ. BARBIE ________________________________ From: Ursula Holleman <uahollem@...> Sent: Tue, February 16, 2010 7:55:41 PM Subject: Re: " transplant " if subq maintains a more consistent level and there are no troughs why do they think the IV route is a " stronger " dose? Macey's IVIG dose was 30 gms. every 3 weeks. but her levels stayed around 800 right before each repeat dose. With her on 8 gms per week (32 per month due to a couple of grams being lost in the subq tissue) she stays at around 1000-1100 every week and has no " down " spells. Have they tested your daughters T-cell system lately? Running a cellular profile might tell you if her PID is progressing and taking on a new component. If it is only an antibody deficiency and she's on gammaglobulin then she should be covered. If exposure to crowds puts her at risk she might need a new workup. Ursula Mom to (17) and Macey (14) http://www.caringbridge.org/visit/maceyholleman ____________ _________ _________ __ From: Mrs. Byrd <kitkat32308> groups (DOT) com Sent: Tue, February 16, 2010 10:50:41 PM Subject: Re: " transplant " She takes IVIG Privigin monthly she was on subq vivaglobin until dec. but she needs stronger meds so IVIG again. On Tue Feb 16th, 2010 10:37 PM EST Ursula Holleman wrote: >does she take gammaglobulin infusions? > Ursula >Mom to (17) and Macey (14) >http://www.caringbr idge.org/ visit/maceyholle man > > > > >___________ _________ _________ ___ >From: Mrs. Byrd <kitkat32308> >groups (DOT) com >Sent: Tue, February 16, 2010 9:42:54 PM >Subject: Re: " transplant " > > >I talked to her dr today and she says deana has antibody deficiency and it doesn't qualify for transplant I wished tehre was a long term fix. She is so tired of being sick. > > > BYrd > >http://www.caringbridge.org/visit/deanabyrd > >___________ _ _________ _________ _________ _________ _________ _ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Just putting my two cents in. When I went to a hepatolist both in New Orleans and here in Oklahoma City , the drs worked in the Abdominal Transplant Centers. But I was there about TX not transplant. That was simply how these specialized Docs work. Yeah it scared me at first. And seeing the poor souls who were End Stage. I chose(?) not to go thru TX with any of the three HepaDocs. One was in Tulsa. All three actually refused TX until I resolved my pain issues. Finally found an internist that treats Fibro.and having TX with another doc( Gastro.) And still under the care of Nuero. Whichever one I see the fax machine lights up as they fax everything to each other. It's so nice that they play nice together! Anyway, I don't know if that helped. Just sharing that I've been to 2 Transplant Centers and there was never any concern about transplant. Huggs, Trudy in Oklahoma http://facebook.com/people/andTrudy-Kinsey/1340460877 " " A well- behaved woman never made history " ...Mae West http://oktravels.wordpress.com http://allrecipes.com/cook/TrudyK/profile.aspx Quote Link to comment Share on other sites More sharing options...
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