Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Hi everyone. I hope you all liked the nightline piece about my transplant. I have been a member for a while, but posted rarely. I was lucky that up untill last summer I had very few problems. In the fall of last year my bili started to rise quickly. In August it was in the low teens. I ended up having 3 ERCPs from August thru December. After my third ERCP my bili was still rising and was told that it would be ineffective to keep doing them. In January I went on disability from work and my bili was 20. The day of transplant my bili was 29. I was very lucky that not only that I was able to find a donor but made it to the surgery. My hope was that the story would help people understand PSC and the need for organ donation. I hope that you all enjoyed it. Dziemian in Worcester,MA PSC 92, UC 93, TX 07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Hi , I happened to read my e-mails and saw that the show would be on, so I saw it. It was a great show. I thought the reporter may have over dramatized the risk to the donor, but hey, it's TV and drama is needed. I was particularly heartened to see how well you were doing after the transplant - when you clearly got your life back! It was also interesting to see you before the transplant, when you looked pretty healthy (the jaundice was hard to see on the TV), but then you laid down, and boy, could I relate to that. I look healthy too, but the fatigue is a huge problem. Anyway, thank you for going public with your PSC and your tranplant. Thanks also to your family and especially to the donor, who seems like a very special person. What is your contact with the donor now? I get choked up just thinking about that. -Marie UC/PSC/J-pouch/AIH > >Reply-To: >To: >Subject: Nightline and PSC >Date: Thu, 20 Sep 2007 17:35:05 -0000 > >Hi everyone. I hope you all liked the nightline piece about my >transplant. I have been a member for a while, but posted rarely. I was >lucky that up untill last summer I had very few problems. In the fall >of last year my bili started to rise quickly. In August it was in the >low teens. I ended up having 3 ERCPs from August thru December. After >my third ERCP my bili was still rising and was told that it would be >ineffective to keep doing them. In January I went on disability from >work and my bili was 20. The day of transplant my bili was 29. I was >very lucky that not only that I was able to find a donor but made it to >the surgery. My hope was that the story would help people understand >PSC and the need for organ donation. I hope that you all enjoyed it. > > Dziemian in Worcester,MA PSC 92, UC 93, TX 07 > _________________________________________________________________ Share your special parenting moments! http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Marie, My wife and I thought the same thing about the way the portrayed the risk to the donor. I'm feeling pretty good now. The toughest thing is when I have a few good days and feel good and then have a few bad ones. I hope to be going back to work in a month or so. In the months before my transplant I would have days when I would think " I feel good today " . Then I would go shopping or to the mall with my family and be wiped out for a day or to. My jaundice was a lot worse then you could see on TV. I actually had a few people (strangers) ask if I had a liver problem, even a year before my transplant. I didn't want to go out the last few months because I almost was looking greenish. I try to talk to him every few days. He's truly a hero. When my friend first told me he was interested I didn't give it much thought. Mainly because I didn't now him well. After finding out he was getting tested and talking to him, I quickly realized what an amazing person he was. I'm truly very lucky. Dziemian in Worcester,MA PSC 92, UC 93, TX 07 > > > > Hi , > > I happened to read my e-mails and saw that the show would be on, so I saw > it. It was a great show. I thought the reporter may have over dramatized the > risk to the donor, but hey, it's TV and drama is needed. I was particularly > heartened to see how well you were doing after the transplant - when you > clearly got your life back! It was also interesting to see you before the > transplant, when you looked pretty healthy (the jaundice was hard to see on > the TV), but then you laid down, and boy, could I relate to that. I look > healthy too, but the fatigue is a huge problem. > > Anyway, thank you for going public with your PSC and your tranplant. Thanks > also to your family and especially to the donor, who seems like a very > special person. What is your contact with the donor now? I get choked up > just thinking about that. > > -Marie > UC/PSC/J-pouch/AIH > > > > > > > >Reply-To: > >To: > >Subject: Nightline and PSC > >Date: Thu, 20 Sep 2007 17:35:05 -0000 > > > >Hi everyone. I hope you all liked the nightline piece about my > >transplant. I have been a member for a while, but posted rarely. I was > >lucky that up untill last summer I had very few problems. In the fall > >of last year my bili started to rise quickly. In August it was in the > >low teens. I ended up having 3 ERCPs from August thru December. After > >my third ERCP my bili was still rising and was told that it would be > >ineffective to keep doing them. In January I went on disability from > >work and my bili was 20. The day of transplant my bili was 29. I was > >very lucky that not only that I was able to find a donor but made it to > >the surgery. My hope was that the story would help people understand > >PSC and the need for organ donation. I hope that you all enjoyed it. > > > > Dziemian in Worcester,MA PSC 92, UC 93, TX 07 > > > > _________________________________________________________________ > Share your special parenting moments! > http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 , Would your donor be willing to talk to other potential donors? I imagine it's a scary thought to be a living donor, and a person might want to talk to someone else who has done this. I'm not in a situation yet where I need a tranplant, but I suspect the day will come. -Marie > >Reply-To: >To: >Subject: Re: Nightline and PSC >Date: Thu, 20 Sep 2007 18:14:33 -0000 > >Marie, > My wife and I thought the same thing about the way the portrayed the >risk to the donor. I'm feeling pretty good now. The toughest thing >is when I have a few good days and feel good and then have a few bad >ones. I hope to be going back to work in a month or so. In the months >before my transplant I would have days when I would think " I feel >good today " . Then I would go shopping or to the mall with my family >and be wiped out for a day or to. My jaundice was a lot worse then >you could see on TV. I actually had a few people (strangers) ask if I >had a liver problem, even a year before my transplant. I didn't want >to go out the last few months because I almost was looking greenish. >I try to talk to him every few days. He's truly a hero. When my >friend first told me he was interested I didn't give it much thought. >Mainly because I didn't now him well. After finding out he was >getting tested and talking to him, I quickly realized what an amazing >person he was. I'm truly very lucky. > > Dziemian in Worcester,MA PSC 92, UC 93, TX 07 > > > > > > > > > > > > Hi , > > > > I happened to read my e-mails and saw that the show would be on, so >I saw > > it. It was a great show. I thought the reporter may have over >dramatized the > > risk to the donor, but hey, it's TV and drama is needed. I was >particularly > > heartened to see how well you were doing after the transplant - >when you > > clearly got your life back! It was also interesting to see you >before the > > transplant, when you looked pretty healthy (the jaundice was hard >to see on > > the TV), but then you laid down, and boy, could I relate to that. I >look > > healthy too, but the fatigue is a huge problem. > > > > Anyway, thank you for going public with your PSC and your >tranplant. Thanks > > also to your family and especially to the donor, who seems like a >very > > special person. What is your contact with the donor now? I get >choked up > > just thinking about that. > > > > -Marie > > UC/PSC/J-pouch/AIH > > > > > > > > > > > > > >Reply-To: > > >To: > > >Subject: Nightline and PSC > > >Date: Thu, 20 Sep 2007 17:35:05 -0000 > > > > > >Hi everyone. I hope you all liked the nightline piece about my > > >transplant. I have been a member for a while, but posted rarely. I >was > > >lucky that up untill last summer I had very few problems. In the >fall > > >of last year my bili started to rise quickly. In August it was in >the > > >low teens. I ended up having 3 ERCPs from August thru December. >After > > >my third ERCP my bili was still rising and was told that it would >be > > >ineffective to keep doing them. In January I went on disability >from > > >work and my bili was 20. The day of transplant my bili was 29. I >was > > >very lucky that not only that I was able to find a donor but made >it to > > >the surgery. My hope was that the story would help people >understand > > >PSC and the need for organ donation. I hope that you all enjoyed >it. > > > > > > Dziemian in Worcester,MA PSC 92, UC 93, TX 07 > > > > > > > _________________________________________________________________ > > Share your special parenting moments! > > http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us > > > > _________________________________________________________________ It’s the Windows Live™ Hotmail® you love — on your phone! http://www.microsoft.com/windowsmobile/mobilehotmail/default.mspx?WT.mc_ID=Mobil\ eHMTagline2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 I think it would be a wonderful idea for the living donor who helped speak to those who may consider becoming a living donor for a friend, family member or loved one; My daughter, Betsy, who has PSC is not yet ready for transplant but her brother has already volunteered to be her living donor; he however has no idea what this will involve. Nightline and PSC > > >Date: Thu, 20 Sep 2007 17:35:05 -0000 > > > > > >Hi everyone. I hope you all liked the nightline piece about my > > >transplant. I have been a member for a while, but posted rarely. I >was > > >lucky that up untill last summer I had very few problems. In the >fall > > >of last year my bili started to rise quickly. In August it was in >the > > >low teens. I ended up having 3 ERCPs from August thru December. >After > > >my third ERCP my bili was still rising and was told that it would >be > > >ineffective to keep doing them. In January I went on disability >from > > >work and my bili was 20. The day of transplant my bili was 29. I >was > > >very lucky that not only that I was able to find a donor but made >it to > > >the surgery. My hope was that the story would help people >understand > > >PSC and the need for organ donation. I hope that you all enjoyed >it. > > > > > > Dziemian in Worcester,MA PSC 92, UC 93, TX 07 > > > > > > > _________________________________________________________________ > > Share your special parenting moments! > > http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us > > > > _________________________________________________________________ It's the Windows Live Hotmail® you love - on your phone! http://www.microsoft.com/windowsmobile/mobilehotmail/default.mspx?WT.mc_ID=Mobil\ eHMTagline2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2007 Report Share Posted September 22, 2007 I was a live donor for my husband on 10/16/07. I would be more than happy to talk to others who are considering this. Marie Nilsson wrote: >, > >Would your donor be willing to talk to other potential donors? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 I would be willing as well. Marti wrote: I was a live donor for my husband on 10/16/07. I would be more than happy to talk to others who are considering this. Marie Nilsson wrote: >, > >Would your donor be willing to talk to other potential donors? > > > Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 If your son wants to contact me directly I would be glad to give him first hand information.Marti"Biette, Beth" wrote: I think it would be a wonderful idea for the living donor who helped speak to those who may consider becoming a living donor for a friend, family member or loved one; My daughter, Betsy, who has PSC is not yet ready for transplant but her brother has already volunteered to be her living donor; he however has no idea what this will involve. -----Original Message----- From: [mailto: ]On Behalf Of Marie Nilsson Sent: Thursday, September 20, 2007 4:02 PM To: Subject: RE: Re: Nightline and PSC , Would your donor be willing to talk to other potential donors? I imagine it's a scary thought to be a living donor, and a person might want to talk to someone else who has done this. I'm not in a situation yet where I need a tranplant, but I suspect the day will come. -Marie >From: " Dziemian" <scedziemian (AT) charter (DOT) net> >Reply-To: >To: >Subject: Re: Nightline and PSC >Date: Thu, 20 Sep 2007 18:14:33 -0000 > >Marie, > My wife and I thought the same thing about the way the portrayed the >risk to the donor. I'm feeling pretty good now. The toughest thing >is when I have a few good days and feel good and then have a few bad >ones. I hope to be going back to work in a month or so. In the months >before my transplant I would have days when I would think "I feel >good today". Then I would go shopping or to the mall with my family >and be wiped out for a day or to. My jaundice was a lot worse then >you could see on TV. I actually had a few people (strangers) ask if I >had a liver problem, even a year before my transplant. I didn't want >to go out the last few months because I almost was looking greenish. >I try to talk to him every few days. He's truly a hero. When my >friend first told me he was interested I didn't give it much thought. >Mainly because I didn't now him well. After finding out he was >getting tested and talking to him, I quickly realized what an amazing >person he was. I'm truly very lucky. > > Dziemian in Worcester,MA PSC 92, UC 93, TX 07 > > > > > > > > > > > > Hi , > > > > I happened to read my e-mails and saw that the show would be on, so >I saw > > it. It was a great show. I thought the reporter may have over >dramatized the > > risk to the donor, but hey, it's TV and drama is needed. I was >particularly > > heartened to see how well you were doing after the transplant - >when you > > clearly got your life back! It was also interesting to see you >before the > > transplant, when you looked pretty healthy (the jaundice was hard >to see on > > the TV), but then you laid down, and boy, could I relate to that. I >look > > healthy too, but the fatigue is a huge problem. > > > > Anyway, thank you for going public with your PSC and your >tranplant. Thanks > > also to your family and especially to the donor, who seems like a >very > > special person. What is your contact with the donor now? I get >choked up > > just thinking about that. > > > > -Marie > > UC/PSC/J-pouch/AIH > > > > > > > > > > > > > >Reply-To: > > >To: > > >Subject: Nightline and PSC > > >Date: Thu, 20 Sep 2007 17:35:05 -0000 > > > > > >Hi everyone. I hope you all liked the nightline piece about my > > >transplant. I have been a member for a while, but posted rarely. I >was > > >lucky that up untill last summer I had very few problems. In the >fall > > >of last year my bili started to rise quickly. In August it was in >the > > >low teens. I ended up having 3 ERCPs from August thru December. >After > > >my third ERCP my bili was still rising and was told that it would >be > > >ineffective to keep doing them. In January I went on disability >from > > >work and my bili was 20. The day of transplant my bili was 29. I >was > > >very lucky that not only that I was able to find a donor but made >it to > > >the surgery. My hope was that the story would help people >understand > > >PSC and the need for organ donation. I hope that you all enjoyed >it. > > > > > > Dziemian in Worcester,MA PSC 92, UC 93, TX 07 > > > > > > > __________________________________________________________ > > Share your special parenting moments! > > http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us > > > > __________________________________________________________ It's the Windows Live Hotmail® you love - on your phone! http://www.microsoft.com/windowsmobile/mobilehotmail/default.mspx?WT.mc_ID=MobileHMTagline2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 http://abcnews.go.com/Video/playerIndex?id=3614279 this is the video on nightline if anyone would care to watch it clint UC 1979 psc2006 Quote Link to comment Share on other sites More sharing options...
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