Laura’s brother and sister were tested to see if they were a possible match to be a kidney donor. Laura’s sister, Esme, was a 4 out of 6 match, which is good but since it’s not an exact match, it would require Laura to be on more anti-rejection drugs. However, her brother, David, was a perfect 6 out of 6 match. Surgery is scheduled for 11/24/14. That’s the Monday right before Thanksgiving. His recovery is expected to take 2-3 weeks and hers is going to be 6-8 weeks. Please keep us in your prayers.
If you’re interested in reading all the details, you can read the long version below.
I haven’t posted anything in the last 11 weeks because it’s been one heck of a ride. We really didn’t have any good news to report so I didn’t even feel like writing anything. Soon after starting dialysis on August 21st, Laura had 4 visits to the ER in 3 weeks. She had two more ER visits in October. However, three things happened in the last 11 weeks that made the transplant possible so fast.
First, Laura’s sister, Esme, and younger brother, David, were tested to see if they were a match for a possible kidney donor. Her sister was tested first and she was a 4 out of 6 match, which is pretty good. They could actually do the transplant with her as a donor, but it means you have to take more anti-rejection medication in the long run. Then they tested her brother and he was a perfect 6 out of 6 match. You can’t get any better than that!
The second thing that happened was that about 9 weeks ago, in hopes that they could get rid of the virus, she started an IVIG (intravenous immunoglobulin) treatment.
Laura was given IVIG last year and it helped knock down the virus levels. However, she never got the treatment like it was recommended. You are supposed to be given two “loading” doses in the first week and then booster doses every three weeks. For Laura, that meant two 80 gram doses followed by 30 gram doses every three weeks. Laura only received 1 and a half of the loading doses and none of the booster doses at the time. This was because our insurance denied the doctor’s request to use it so and refused to pay for it. They said it was “experimental” for her diagnosis. I believe they just didn’t want to pay up since it costs $150 per gram. In comparison, gold is only about $36 a gram. Our current insurance did approve the IVIG and now that she’s been on IVIG for 9 weeks, the virus levels are undetectable.
Finally, Laura’s health had improved significantly. Her severe anemia was much better and her albumin levels had come up. All of her other blood results showed that everything was at a level were it was considered safe to proceed with a transplant.
When the transplant doctors learned that David was a perfect match, Laura showed no signs of the virus, and her health had improved, they wanted to perform the transplant as soon as possible. We were first told that we’d have the surgery Dec 1st or Dec 8th depending on which date was available. However, both dates ended up being already taken so that’s when they asked us if November 24th would be okay.
Honestly, there was a flood of emotions. We were excited, shocked, happy, concerned, and everything else all at once. We were thinking it would be June or July at the earliest.
We’ve come a long way. Last year on November 24th, we were getting on a plane to the Mayo Clinic in Rochester, MN and this year on November 24th, she will be getting a new kidney thanks to her brother, David. I’m saddened that we were unable to save her kidneys, but at the same time, I’m grateful that she gets a second chance at a somewhat normal life. Yes, she will need to take anti-rejection medication the rest of her life. Yes, there is still a 30% chance that the disease could come back and infect the new kidney. However, we just need to have faith and pray that everything will work out fine.
The next few weeks will be pretty tough. Laura’s recovery will take 6-8 weeks and David’s will be about 2-3 weeks. The hardest part on Laura is that she’s been told to limit the time she spends with our kids for the first 2 weeks. Since she will be on very high doses of immunosuppressants, any little germ from a cough or a sneeze, could cause major problems. I guess she’ll need to FaceTime with them!
From the bottom of our hearts, we’d like to thank everyone who has made this possible for us. Thank you for all of your prayers and support. There have been many days where we just wanted to throw in the towel but someone was always there to make sure we kept moving forward.