Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 I did not know that having psc disallowed you from donating blood! Three years and 2 organ transplants in and I'm still learning something new.Sent from my BlackBerry Smartphone provided by AlltelFrom: "Debbie Rasa" Date: Tue, 10 Mar 2009 11:52:18 -0000To: < >Subject: Bone Marrow Donation Hello, all Years ago, long before I knew I had PSC, I joined the national bone marrow registry. I had almost forgotten about it, but yesterday I received a letter asking me to update my contact info for the program (we moved last year). My question is: does PSC impact my ability to donate bone marrow? I know that we cannot donate blood. Should I take myself off this registry, or can I still do this if it is ever needed? Thanks! Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Hi Debbie, You can't donate blood if you have PSC? I recently donated blood here at the national HQ of the Red cross and let them know I had PSC and was taking urso. Now, the nurse did not seem to be the sharpest needel in the clinic, but I assumed they knew... So why can't we donate PSC blood? Thanks, > > I did not know that having psc disallowed you from donating blood! Three years and 2 organ transplants in and I'm still learning something new. > Sent from my BlackBerry Smartphone provided by Alltel > > Bone Marrow Donation > > > Hello, all > > Years ago, long before I knew I had PSC, I joined the national bone marrow registry. I had almost forgotten about it, but yesterday I received a letter asking me to update my contact info for the program (we moved last year). > > My question is: does PSC impact my ability to donate bone marrow? I know that we cannot donate blood. Should I take myself off this registry, or can I still do this if it is ever needed? > > Thanks! > > Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Hi Debbie, You can't donate blood if you have PSC? I recently donated blood here at the national HQ of the Red cross and let them know I had PSC and was taking urso. Now, the nurse did not seem to be the sharpest needel in the clinic, but I assumed they knew... So why can't we donate PSC blood? Thanks, > > I did not know that having psc disallowed you from donating blood! Three years and 2 organ transplants in and I'm still learning something new. > Sent from my BlackBerry Smartphone provided by Alltel > > Bone Marrow Donation > > > Hello, all > > Years ago, long before I knew I had PSC, I joined the national bone marrow registry. I had almost forgotten about it, but yesterday I received a letter asking me to update my contact info for the program (we moved last year). > > My question is: does PSC impact my ability to donate bone marrow? I know that we cannot donate blood. Should I take myself off this registry, or can I still do this if it is ever needed? > > Thanks! > > Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Hi Debbie, You can't donate blood if you have PSC? I recently donated blood here at the national HQ of the Red cross and let them know I had PSC and was taking urso. Now, the nurse did not seem to be the sharpest needel in the clinic, but I assumed they knew... So why can't we donate PSC blood? Thanks, > > I did not know that having psc disallowed you from donating blood! Three years and 2 organ transplants in and I'm still learning something new. > Sent from my BlackBerry Smartphone provided by Alltel > > Bone Marrow Donation > > > Hello, all > > Years ago, long before I knew I had PSC, I joined the national bone marrow registry. I had almost forgotten about it, but yesterday I received a letter asking me to update my contact info for the program (we moved last year). > > My question is: does PSC impact my ability to donate bone marrow? I know that we cannot donate blood. Should I take myself off this registry, or can I still do this if it is ever needed? > > Thanks! > > Debbie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 They don't want my blood because I am on blood thinners, but I wasn't aware to any restriction because of PSCIan Hi Debbie, You can't donate blood if you have PSC? I recently donated blood here at the national HQ of the Red cross and let them know I had PSC and was taking urso. Now, the nurse did not seem to be the sharpest needel in the clinic, but I assumed they knew... So why can't we donate PSC blood? Thanks, > > I did not know that having psc disallowed you from donating blood! Three years and 2 organ transplants in and I'm still learning something new. > Sent from my BlackBerry Smartphone provided by Alltel > > Bone Marrow Donation > > > Hello, all > > Years ago, long before I knew I had PSC, I joined the national bone marrow registry. I had almost forgotten about it, but yesterday I received a letter asking me to update my contact info for the program (we moved last year). > > My question is: does PSC impact my ability to donate bone marrow? I know that we cannot donate blood. Should I take myself off this registry, or can I still do this if it is ever needed? > > Thanks! > > Debbie > -- Ian Cribb  P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 From what I have been told is that we are discouraged from donating, but can donate if we still want to. The reason I was told for not donating, is that we can become anemic from donating. Since the liver filters the blood, and if we remove a pint, there would be a need to replace the volume, may be why. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 I was told that I could donate blood, but that they'd probably just discard the blood, since when they did their screening tests they'd find the liver function was bad. In fact I did donate plasma once before my PSC diagnosis, and they rejected that. That was the first hint I had that there was something wrong with my liver. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 I, too, was discouraged by my hepatologist (or may have been gastroenerologist) from donating blood. Never really understood why. His only explanation was that it could cause issues or problems (with me? or with donating blood in general? I don't know.). I am also on the bone marrow registry, and really need to contact them regarding it. I've asked my hepatologist, but he didn't know. He suggested I contact the bone marrow people. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Actually, the first hint that I had liver trouble was when I donated blood. A couple of weeks later I got a letter from the red cross saying that they had to throw out my blood because my liver enzymes were elevated and I should go to the doctor to be checked for hepatitis. Even though I told them later that I'd been checked for every kind of hepatitis under the sun - all negative - they still put me on their little list and won't take my blood anymore. Nita -----Original Message----- Hi Debbie,You can't donate blood if you have PSC? Recent Activity 5 New Members 1 New PollsVisit Your Group Give Back Yahoo! for Good Get inspired by a good cause. Y! Toolbar Get it Free! easy 1-click access to your groups. Yahoo! Groups Start a group in 3 easy steps. Connect with others. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 15 years ago, I was told not to donate blood any more due to effects of sulfasalazine (plus, I’ve always had low normal hemoglobin). With PSC, you don’t need any more stress. Arne UC 1977, PSC 2000 Alive and well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 15 years ago, I was told not to donate blood any more due to effects of sulfasalazine (plus, I’ve always had low normal hemoglobin). With PSC, you don’t need any more stress. Arne UC 1977, PSC 2000 Alive and well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 > > > > I did not know that having psc disallowed you from donating blood! Three years and 2 organ transplants in and I'm still learning something new. > > Sent from my BlackBerry Smartphone provided by Alltel > > > > Bone Marrow Donation > > > > > > Hello, all > > > > Years ago, long before I knew I had PSC, I joined the national bone marrow registry. I had almost forgotten about it, but yesterday I received a letter asking me to update my contact info for the program (we moved last year). > > > > My question is: does PSC impact my ability to donate bone marrow? I know that we cannot donate blood. Should I take myself off this registry, or can I still do this if it is ever needed? > > > > Thanks! > > > > Debbie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 > > > > I did not know that having psc disallowed you from donating blood! Three years and 2 organ transplants in and I'm still learning something new. > > Sent from my BlackBerry Smartphone provided by Alltel > > > > Bone Marrow Donation > > > > > > Hello, all > > > > Years ago, long before I knew I had PSC, I joined the national bone marrow registry. I had almost forgotten about it, but yesterday I received a letter asking me to update my contact info for the program (we moved last year). > > > > My question is: does PSC impact my ability to donate bone marrow? I know that we cannot donate blood. Should I take myself off this registry, or can I still do this if it is ever needed? > > > > Thanks! > > > > Debbie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 > > > > I did not know that having psc disallowed you from donating blood! Three years and 2 organ transplants in and I'm still learning something new. > > Sent from my BlackBerry Smartphone provided by Alltel > > > > Bone Marrow Donation > > > > > > Hello, all > > > > Years ago, long before I knew I had PSC, I joined the national bone marrow registry. I had almost forgotten about it, but yesterday I received a letter asking me to update my contact info for the program (we moved last year). > > > > My question is: does PSC impact my ability to donate bone marrow? I know that we cannot donate blood. Should I take myself off this registry, or can I still do this if it is ever needed? > > > > Thanks! > > > > Debbie > > > Quote Link to comment Share on other sites More sharing options...
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