The agony of the wait
My heart goes out to a young couple of siblings named Matt and Megan, who are traveling together on the journey Joe and I went through of brother-sister liver unity. Their mom Cindy has been writing to me as their story unfolds, and her latest update introduced a circumstance I hadn't heard of from other readers yet, one more "complication" among many that can add to the agonizing waiting period donors and recipients often go through. Get this:
Megan, who's in her mid 20s now, was diagnosed with Hepatitis C in her late teens -- the result of blood transfusions she had as a very young child over a decade earlier. Since then she has suffered from cirrhosis, Crohn's disease, and diabetes. In October, when Cindy first wrote to me, Megan had level-4 liver disease, with AFP levels through the roof; her physicians were certain it was liver cancer. Enter Matt, her brother, who was cleared to be her donor in February. Great news! But on the same day he was approved, Megan's AFP levels mysteriously dropped severely, and her perplexed docs decided not to schedule surgery, at least for now. What kind of news is that?!? For Cindy, Matt, and Megan, it's difficult news -- and I can understand why. On one hand it's a possible miracle that Megan's body is healing itself. On the other hand, it's just another speed bump that causes a longer wait for the transplant she'll ultimate need. She is still incredibly sick, and Matt is ready for the surgery, but everything is stuck in a holding pattern. Any of us who have had to wait a single day for surgery once we know it's going to happen can attest to how difficult this must be for all of them.
There are no easy answers for why life throws us these curves. All we can do is stay strong and hope things are unfolding the way they do for some sort of reason. But as Cindy wrote to me, "It is so encouraging that living donation is giving us hope." If you have stories of your own wait or can relate, I'd welcome your comments. And if anyone out there has ever heard of AFP levels suddenly plummeting after several weeks of elevation, please let me know!
Megan, who's in her mid 20s now, was diagnosed with Hepatitis C in her late teens -- the result of blood transfusions she had as a very young child over a decade earlier. Since then she has suffered from cirrhosis, Crohn's disease, and diabetes. In October, when Cindy first wrote to me, Megan had level-4 liver disease, with AFP levels through the roof; her physicians were certain it was liver cancer. Enter Matt, her brother, who was cleared to be her donor in February. Great news! But on the same day he was approved, Megan's AFP levels mysteriously dropped severely, and her perplexed docs decided not to schedule surgery, at least for now. What kind of news is that?!? For Cindy, Matt, and Megan, it's difficult news -- and I can understand why. On one hand it's a possible miracle that Megan's body is healing itself. On the other hand, it's just another speed bump that causes a longer wait for the transplant she'll ultimate need. She is still incredibly sick, and Matt is ready for the surgery, but everything is stuck in a holding pattern. Any of us who have had to wait a single day for surgery once we know it's going to happen can attest to how difficult this must be for all of them.
There are no easy answers for why life throws us these curves. All we can do is stay strong and hope things are unfolding the way they do for some sort of reason. But as Cindy wrote to me, "It is so encouraging that living donation is giving us hope." If you have stories of your own wait or can relate, I'd welcome your comments. And if anyone out there has ever heard of AFP levels suddenly plummeting after several weeks of elevation, please let me know!
posted by Becky at
10:00 PM
4 Comments:
Becky -
Thank you so much for this post. Reading through it in someone else's words brought tears to my eyes - it's harder for me to read about it than it is to talk about it (guess I've kind of conditioned myself to not really THINK about what I'm saying). We go to see Megan's hemotologist on Monday and she's thinking that she will insist on a biopsy. Will keep you posted.
Cindy
By
Anonymous, at 12:07 PM
Becky,
How is Matt and Megan at this point? Have they gone through with the surgery?
Renee
By
LiverLetLive, at 11:59 AM
Becky,
How are Matt and Megan doing now? I haven't heard an update and my heart goes out to them and their family. My father's liver transplant was postponed a few times and I know what they're going through. We just have to trust the doctors because a major surgery is not good to go into when the patient is sick. It's a double-edged sword.
By
LiverLetLive, at 12:02 PM
Becky & Cindy-
How are Matt and Megan doing now? I haven't heard an update and my heart goes out to them and their family. My father's liver transplant was postponed a few times and I know what they're going through. We just have to trust the doctors because a major surgery is not good to go into when the patient is sick. It's a double-edged sword.
By
LiverLetLive, at 12:05 PM
Post a Comment
<< Home