Infectious Disease and Waitlist Update
Greetings, fine friends! Look at this! Two updates on the same day?!?! Yup.
Today my mom and I went down to UTSW to see the infectious diseases doctor for a follow-up. He still wants me to try to track down some documentation of my vaccinations from when I was a kid. Apparently, I have antibodies for mumps and rubella, but not measles. With the increase in anti-vaccine parents over recent years, he's concerned about me returning to the classroom without documentation of my vaccines. Basically, if a kid comes in my room and happens to have skipped his/her vaccines, I could be in serious trouble. So tomorrow I'm calling my university to see if they have any student records that would show my vaccines. Public Service Announcement: Keep your vaccine records. You just never know when you might need them.
He also shared that - right after transplant - I'll be given three doses of an IV medication that will essentially wipe out all my white blood cells. He said that my bloodwork will look very similar to someone with advanced HIV in terms of my immunity. Apparently, my white blood cells will take up to a year and a half to rebuild, so I'll be pretty seriously immuno-suppressed for about 18 months post transplant. That is also assuming that I don't have any issues with rejection. If that happens, I'll have to have even more steroids, which will extend my immune-suppression even further. Needless to say, that may put a bit of a catch in my plans to return to work after 4-6 months, but I know that I can't possibly know how that is going to go, so I have to just take things one day at a time and handle whatever comes my way.
Otherwise, he was pretty encouraging. He said that the likelihood of my cryptococcus infection returning post-transplant is pretty slim, so that's a relief.
After we saw him, I asked to speak to one of the pre-transplant coordinators. I wanted to ask her about where I was on the waitlist and the possible timeline, especially now that my potential living donors have been exhausted. She said that - in the DFW area - the average wait is 6-7 years for people with type O blood. I had previously been told 5 years was the average, so this news means that I have a bit longer of a wait than we initially had hoped. I'll have my 6th dialysis "anniversary" this January, so I'm hopeful that I'll be able to get transplant sometime in 2018. Initially, we had hoped that it would be sometime this year, but it looks like it may take longer. In fact, just today, two people with O blood type were placed on the transplant list in the same clinic, and because both of them started dialysis in 2010, they both go higher on the list, so I was actually bumped down at least two spots just today. That type of thing will continue to happen as patients with more dialysis time come on the list.
I realize that this is a situation that I have absolutely NO control over, so I have to just live my life and take things day by day. I feel relieved that it's highly unlikely that I'll have to be out for the beginning of the school year, and I'm grateful that I'm doing well on dialysis. I keep reminding myself that - three months ago - I had no idea transplant would be an option for me, and at least now I'm listed and ready to go.
However, I'm also feeling disappointed. Everything - the appointments, the testing - has felt like it was moving along so quickly and with such incredible momentum. It was like a mad dash to get me listed. And now I'm just waiting. It's like we're stuck in a school zone. After flying 40 mph down the street, the flashing lights have come on and we've slowed to a 20 mph crawl. I know that - at some point - that white stripe will appear, I'll get the call, and we'll ramp up to 40 mph again. But I can't see that white line right now, so in the meantime, I'm taking deep breaths, reminding myself to be grateful, and focusing on my health, losing weight, building muscle, and getting plenty of rest. I can't imagine having to wait on the list for an additional 6-7 years on top of dialysis time, as it used to be. I'm so grateful they have changed the procedure so I can get credit for my time with Optimus Prime.
So, onward and upward. I'm going to enjoy the last bit of my summer, take comfort in knowing that I'm listed, keep my head down and keep on keeping on.
Lots of love to you all!
#teamkidney
Today my mom and I went down to UTSW to see the infectious diseases doctor for a follow-up. He still wants me to try to track down some documentation of my vaccinations from when I was a kid. Apparently, I have antibodies for mumps and rubella, but not measles. With the increase in anti-vaccine parents over recent years, he's concerned about me returning to the classroom without documentation of my vaccines. Basically, if a kid comes in my room and happens to have skipped his/her vaccines, I could be in serious trouble. So tomorrow I'm calling my university to see if they have any student records that would show my vaccines. Public Service Announcement: Keep your vaccine records. You just never know when you might need them.
He also shared that - right after transplant - I'll be given three doses of an IV medication that will essentially wipe out all my white blood cells. He said that my bloodwork will look very similar to someone with advanced HIV in terms of my immunity. Apparently, my white blood cells will take up to a year and a half to rebuild, so I'll be pretty seriously immuno-suppressed for about 18 months post transplant. That is also assuming that I don't have any issues with rejection. If that happens, I'll have to have even more steroids, which will extend my immune-suppression even further. Needless to say, that may put a bit of a catch in my plans to return to work after 4-6 months, but I know that I can't possibly know how that is going to go, so I have to just take things one day at a time and handle whatever comes my way.
Otherwise, he was pretty encouraging. He said that the likelihood of my cryptococcus infection returning post-transplant is pretty slim, so that's a relief.
After we saw him, I asked to speak to one of the pre-transplant coordinators. I wanted to ask her about where I was on the waitlist and the possible timeline, especially now that my potential living donors have been exhausted. She said that - in the DFW area - the average wait is 6-7 years for people with type O blood. I had previously been told 5 years was the average, so this news means that I have a bit longer of a wait than we initially had hoped. I'll have my 6th dialysis "anniversary" this January, so I'm hopeful that I'll be able to get transplant sometime in 2018. Initially, we had hoped that it would be sometime this year, but it looks like it may take longer. In fact, just today, two people with O blood type were placed on the transplant list in the same clinic, and because both of them started dialysis in 2010, they both go higher on the list, so I was actually bumped down at least two spots just today. That type of thing will continue to happen as patients with more dialysis time come on the list.
I realize that this is a situation that I have absolutely NO control over, so I have to just live my life and take things day by day. I feel relieved that it's highly unlikely that I'll have to be out for the beginning of the school year, and I'm grateful that I'm doing well on dialysis. I keep reminding myself that - three months ago - I had no idea transplant would be an option for me, and at least now I'm listed and ready to go.
However, I'm also feeling disappointed. Everything - the appointments, the testing - has felt like it was moving along so quickly and with such incredible momentum. It was like a mad dash to get me listed. And now I'm just waiting. It's like we're stuck in a school zone. After flying 40 mph down the street, the flashing lights have come on and we've slowed to a 20 mph crawl. I know that - at some point - that white stripe will appear, I'll get the call, and we'll ramp up to 40 mph again. But I can't see that white line right now, so in the meantime, I'm taking deep breaths, reminding myself to be grateful, and focusing on my health, losing weight, building muscle, and getting plenty of rest. I can't imagine having to wait on the list for an additional 6-7 years on top of dialysis time, as it used to be. I'm so grateful they have changed the procedure so I can get credit for my time with Optimus Prime.
So, onward and upward. I'm going to enjoy the last bit of my summer, take comfort in knowing that I'm listed, keep my head down and keep on keeping on.
Me trying to keep my life under control.
#teamkidney
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