Journal entry by Rachel Marek —
Hey everyone! Sorry we haven’t updated.❤️ This is going to be a long one!
Remember when we pulled the kiddos out of school several days early to start isolating for us to be able to come home? Well on Friday of that week we had the kids Covid tested and Ryan popped up positive so we had to delay our arrival home. My parents were taking care of them and Ryan nor my parents or Rylie ever experienced any symptoms so we had them retested on Christmas Eve and the were negative so we were able to make it home. Throughout this journey we have made plans and constantly it seems that our plans and God’s plans have been different so many times. He certainly reminds me daily that He is in control. When we finally were home it was so great to see and love on the kids. Being in your own house with your stuff and your kids is the best. Rylie has been glued to either Chris or me. There has been lots of hugs and snuggles with the kiddos. Ryan has been a big help around the house doing things Chris would normally do like heavy lifting and building a fire in the fire place since Chris isn’t allowed to lift more than a gallon of milk because he is at such a big risk of hernias with such a huge incision in the shape of a Mercedes Benz sign that spans his abdomen.
Since being home we all have been on lockdown here at the house. No family Christmas’ and no one over to visit or play. Chris only gets out to go to dialysis and a weekly lab draw. I get out for a curbside pick up then back to the house. With the Covid cases on the rise we all have to be very cautious because with Chris’ immune suppressed system right now as it would put him back in the hospital. In order to fight Covid or any other illness at this point the doctors would have to lower his anti rejection drugs so his immune system would kick back in to fight the virus which means his body could reject his new liver. The kids started virtual school last week which is not great. Keeping them on task is awful but its necessary right now. We are all having to make sacrifices right now for Chris’ health.
We are 2 months and 3 days post transplant today! Chris is doing really well with his recovery. His vitals have been good, his liver numbers look great his urine output has been on a steady rise. His kidneys have good output however right now they just don’t seem to be filtering the toxins out of the body. Chris is still doing 3 days a week of dialysis but because he is having good output numbers they are able to cut him back to 3 hrs instead of 4. We are still praying his kidneys fully recover. Please pray for his kidneys to start filtering. This past week we had a televisit with the liver team in Houston. They want to get Chris started on his safety net paperwork so that they can get him on the kidney transplant list. Just a little background..... a healthy liver transfuses the kidneys but when the liver is in failure it stops profusing the kidneys which can cause kidney failure. What this safety net paperwork does is gets him listed on the transplant list between 6 months to a year from his liver transplant and moves him to the top of the list since his kidney failure was due to the liver and they could have given him the liver and kidney from the same donor but they always try and wait to see if the kidneys will kick back in themselves. Kidney transplants are far less complicated than liver transplants. One doctor told me a liver transplant is like the meat and potatoes of a meal and a kidney is an appetizer. The transplant and recovery are easier.
On Thursday of this week we will travel back to Houston for a in person visit with the transplant team we will discuss his progress and will probably be seen by the kidney transplant team to start their evaluation to list him. Chris has had some pain on his right side and we will discuss whether this is scar tissue build up or something else. He gets the pain when he moves a certain way. We just want to make sure this is all common.
Please 🙏🏻 Pray for our doctors appointment this week, the kids stay focused on school, the Covid cases begin to go down, that his kidneys begin to filter and things continue in the right direction.
Thank you all so much for loving us and for all your support through this. We pray that God will continue to use us and this experience for His glory. 🙏🏻❤️
Patients and caregivers love hearing from you; add a comment to show your support.
Help Chris Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Chris's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
