Before Christmas I started talking on the phone with a new HPS friend named Janet. Janet lives in the Chicago area and didn’t realize that she had the HPS type of albinism until her lungs were already quite sick. Her lungs were too sick for her to participate in any of the trials at NIH, and thus a lung transplant was her best option.
Getting on a transplant list is no easy task. Janet has patiently undergone every test asked of her and weeks and weeks of medical scrutiny. This last week she got the call she’s been waiting for – she’s on the list.
It’s a victory for Janet, but it’s also a victory for the HPS community. Thanks to people like Janet who have the tenacity to hang in there, even when things are very tough, future HPS’ers in need of a lung transplant will have it just a tad easier.
It wasn’t so long ago HPS’ers had a very difficult time finding a transplant team that would even talk to them, let alone do a complete work up to evaluate them for being listed for transplant. They were afraid of the bleeding associated with HPS, even though our bleeding can be controlled with platelet transfusions during major surgeries like this one.
Then in the last few years we finally broke through. We had two successful lung transplants – two very brave men who fought the system and found wonderful doctors willing to give them a shot.
And now today we have two HPS’ers who are anxiously awaiting that special call to tell them that another family, out there somewhere in the midst of their own loss and grief, has made a gift of life and given them a second chance. They are trail blazers, and we will all benefit from their experience.
Getting on a transplant list is no easy task. Janet has patiently undergone every test asked of her and weeks and weeks of medical scrutiny. This last week she got the call she’s been waiting for – she’s on the list.
It’s a victory for Janet, but it’s also a victory for the HPS community. Thanks to people like Janet who have the tenacity to hang in there, even when things are very tough, future HPS’ers in need of a lung transplant will have it just a tad easier.
It wasn’t so long ago HPS’ers had a very difficult time finding a transplant team that would even talk to them, let alone do a complete work up to evaluate them for being listed for transplant. They were afraid of the bleeding associated with HPS, even though our bleeding can be controlled with platelet transfusions during major surgeries like this one.
Then in the last few years we finally broke through. We had two successful lung transplants – two very brave men who fought the system and found wonderful doctors willing to give them a shot.
And now today we have two HPS’ers who are anxiously awaiting that special call to tell them that another family, out there somewhere in the midst of their own loss and grief, has made a gift of life and given them a second chance. They are trail blazers, and we will all benefit from their experience.
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