Living on the frontlines

We have added a new HPSer to the patient registry. This puts us at 70 to go for this year's Hundred People Search initiative. We only have three weeks to go for the year. If you know an HPSer who is not registered with the HPS Network, please ask them to register with us - no matter where in the world they live. It is free and it helps promote a cure for all of us!

Today is National Donor Day – a day to highlight the very special gift that those who agree to become organ donors give to the 120,000 of us currently waiting for new organs in the United States. It is the kind of gift that words fall short of. Hallmark doesn’t make a card for this. How could they?  I’ve noticed from the experience of some friends who have received their lungs that the time frame before you are allowed to contact (through UNOS) your donor family has changed. They told me in my transplant education that while I was still in the hospital, I’d be given a card to send to my donor family. It is, of course, up to them whether we ever make contact. I know if they are willing, I will want to do it.  I can’t imagine writing that kind of thank you note, especially while still in the hospital – but I could never not do it! I’ve been thinking of writing a note and having it in my things ready to go so that it is well thought out, and ready to go.  What do I say? I’ve spent a

Last week I had my first transplant clinic appointment after being placed on the transplant list. It was pleasantly non-eventful. I’d been fighting a sinus problem of some type, and was very worried that, although I didn’t have a fever, it might somehow be of more concern should I get “the call.” Thankfully, that was not the case, and the sinus problem is improving and almost gone. It has just taken forever.  I wasn’t really nervous about this appointment and didn’t expect anything to happen, yet somehow, when I was in the waiting room I suddenly did start to feel pretty anxious. Although I am finally on the list, I could also get taken off the list, should I develop any medical issues that might prevent the transplant from being successful.  I was actually quite surprised that I suddenly felt anxious. Ryan was not with me for this appointment. Indeed, it was the first transplant appointment I’ve ever done without someone with me. Even if there isn’t much for Ryan to “do” at these ap

We have added a new HPSer to the patient registry. That leaves us at 71 to go on the Hundred People Search (H.P.S.) Keep up the outreach!

We have added a new HPSer to the HPS patient registry - that makes 72 to go for the Hundred People Search (H.P.S.)