Journal entry by Jeff Dorn —
Greetings everyone,
Today is day 135 post-transplant.
Just wanted to update everyone on my progress. I was finally able to come home October 25th. The first couple weeks home were rough, but it's gotten a bit better since then. I've struggled for a while to write this because in a lot of ways the changes/improvements have been small and I did not want the post to sound negative or that I wasn't grateful for where I am.
Medically my lab numbers look great! I've had minor ups and downs at various times and my doctor is quick to respond with med changes as necessary to see if it's a drug interaction or the start of some sort of GVHD, IE: the donor cells attacking my body. So far, all issues have been medication related. The tough part about that is the med changes are happening all the time. With every med change comes different side effects. Physically I am still dealing with a few issues. My nervous system is damaged. I continue to experience tremors and I have neuropathy in my feet that is fairly significant. My toes are numb 100% of the time. The other more concerning issue is that from my mid back going down and into my legs it feels like I am connected to a bare electrical cord. An almost constant vibrating/tingling sensation. My doctor said this could take months to years to repair itself, so we wait and see. It does at times affect my stability and stairs require me to use a handrail.
I am still weak from the muscle loss and my taste is still off, although it is improving as medications are decreased or discontinued. My hair is finally starting to grow back! I was hoping some of it wouldn't to be perfectly honest! I have a few other issues that are quite minor and I'm sure with time they will subside.
We continue to have to limit contact with others until the anti-rejection medications are stopped and I get revaccinated. We were not able to get Christmas cards out this year so please count this as our holiday greeting. Please take time this holiday season to count your many blessings. If 2022 has taught our family one thing it's that life can change in an instant. We are thankful to all of you for your many prayers and support in 2022.
May you all have a wonderful holiday season and lets all pray for a healthy and prosperous 2023.
God bless,
Jeff
Today is day 135 post-transplant.
Just wanted to update everyone on my progress. I was finally able to come home October 25th. The first couple weeks home were rough, but it's gotten a bit better since then. I've struggled for a while to write this because in a lot of ways the changes/improvements have been small and I did not want the post to sound negative or that I wasn't grateful for where I am.
Medically my lab numbers look great! I've had minor ups and downs at various times and my doctor is quick to respond with med changes as necessary to see if it's a drug interaction or the start of some sort of GVHD, IE: the donor cells attacking my body. So far, all issues have been medication related. The tough part about that is the med changes are happening all the time. With every med change comes different side effects. Physically I am still dealing with a few issues. My nervous system is damaged. I continue to experience tremors and I have neuropathy in my feet that is fairly significant. My toes are numb 100% of the time. The other more concerning issue is that from my mid back going down and into my legs it feels like I am connected to a bare electrical cord. An almost constant vibrating/tingling sensation. My doctor said this could take months to years to repair itself, so we wait and see. It does at times affect my stability and stairs require me to use a handrail.
I am still weak from the muscle loss and my taste is still off, although it is improving as medications are decreased or discontinued. My hair is finally starting to grow back! I was hoping some of it wouldn't to be perfectly honest! I have a few other issues that are quite minor and I'm sure with time they will subside.
We continue to have to limit contact with others until the anti-rejection medications are stopped and I get revaccinated. We were not able to get Christmas cards out this year so please count this as our holiday greeting. Please take time this holiday season to count your many blessings. If 2022 has taught our family one thing it's that life can change in an instant. We are thankful to all of you for your many prayers and support in 2022.
May you all have a wonderful holiday season and lets all pray for a healthy and prosperous 2023.
God bless,
Jeff
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