On Monday Mom and I left for Cleveland. Every 2 months until I get transplanted the clinic wants to check in on me and update my status. I also need to notify them of any changes because that can alter my position on the list.
So Tuesday morning I began the routine of bloodwork, chest xray and then PFT. My FEV1 is holding steady at 24%, I gained a few feet on the 6 minute walk but am on oxygen all the time now, xray looked the same as last time, and all of my other organs are working well. Dr Budev was very pleased with all of that and said that I'm in the perfect position to be transplanted. I need to try my hardest to keep the lung function that I have and work my body as much as possible. By doing this I should be able to recover easier and overall, do better. The only thing she'd really like is for me to gain a few more pounds... but that isn't anything new to my life. I gain one pound, they wanted 4.... but she is happy that I'm at least maintaining my weight.
Tuesday was my first day wearing oxygen out in public. I figured what better place to not get funny looks. I'm able to come off of the O2 sometimes when I'm just sitting on the couch, but any movement causes my sats to drop and on goes the nasal cannula. It's just so hard to hide an oxygen tank or condenser when walking around the grocery store.
Anyway, I signed some papers for some research studies. One is for Tcell something... I can't remember. The only they asked is that they wanted to take an extra vial of blood when I get bloodwork done there and that if there's any left, some of my BAL fluid during bronchs. I figure, it doesn't change anything that I'm doing and it helps them, why wouldn't I sign?! The second one is for a new procedure with the transplant. I haven't mailed the form back in, but I think I'm going to do it. Right now at Cleveland, they only connect 1 of the 2 blood vessels that feed the lungs. It's an easier procedure and there's less risk since you're only connecting one blood vessel to another, not 2. Dr. Petterson is from Denmark and has been connecting the 2nd vessel over there for a while and wanted to incorp. his process in at Cleveland, but needs approval. They've seen quicker recovery time and better longevity with attaching both vessels, but it comes with the risk of the vessel detaching and hemorrhaging. Overall the risk isn't that much more than the current procedure. I dunno. I guess if I'm willing to take such a big leap of faith with the transplant in general, this is just a little step. Dr. Budev feels strongly that connecting both vessels will become standard protocol at Cleveland in a couple of years when they have their research completed.
She also said that she thought I would get transplanted soon. They've already done 6 (I think... long day, I can't remember exactly) and she said she would expect in the next 2 months. I got the green light to go back to school and work as a Medical Technologist after tx and I got the OK to reconsider the pill instead of getting my tubes tied just yet. I just wasn't ready for that mentally.
We then got in the car and attempted to come home... yes, I said attempted. There was limited visibility on the road due to snow and then Mom's car started acting strange. We got off the highway and found an autozone. They did a free diagnostic test and sent us to a Superlube to get the car worked on. While these people were a little strange, they were kind enough to get the car in and fixed in under an hour. Mom had to give them a little more info about me than I cared to share... but I had to sit in the waiting area doing my IV vancomycin.... we were already beyond personal in my book. I explained to them why I was doing IVs and going to Cleveland when I live in Cincinnati. Turns out they had a guy who worked there a few years back who has CF. He got sick this time every year and had to take 2-3 weeks off work (Gee... wonder what he was doing
) It was just a strange coincidence. Out of all the places we could have gone to, we ended up at one where people knew what CF was. Well, a couple of them. One of them asked if I was sick because of smoking. I should have said yes... maybe have deterred some of those men from continuing their nasty habit. 
Ok, so my meds are all done and I'm beat. All the IVs and benadryl and treatments and traveling... I can't wait for Tuesday to come and for me to be finished!
So Tuesday morning I began the routine of bloodwork, chest xray and then PFT. My FEV1 is holding steady at 24%, I gained a few feet on the 6 minute walk but am on oxygen all the time now, xray looked the same as last time, and all of my other organs are working well. Dr Budev was very pleased with all of that and said that I'm in the perfect position to be transplanted. I need to try my hardest to keep the lung function that I have and work my body as much as possible. By doing this I should be able to recover easier and overall, do better. The only thing she'd really like is for me to gain a few more pounds... but that isn't anything new to my life. I gain one pound, they wanted 4.... but she is happy that I'm at least maintaining my weight.
Tuesday was my first day wearing oxygen out in public. I figured what better place to not get funny looks. I'm able to come off of the O2 sometimes when I'm just sitting on the couch, but any movement causes my sats to drop and on goes the nasal cannula. It's just so hard to hide an oxygen tank or condenser when walking around the grocery store.
Anyway, I signed some papers for some research studies. One is for Tcell something... I can't remember. The only they asked is that they wanted to take an extra vial of blood when I get bloodwork done there and that if there's any left, some of my BAL fluid during bronchs. I figure, it doesn't change anything that I'm doing and it helps them, why wouldn't I sign?! The second one is for a new procedure with the transplant. I haven't mailed the form back in, but I think I'm going to do it. Right now at Cleveland, they only connect 1 of the 2 blood vessels that feed the lungs. It's an easier procedure and there's less risk since you're only connecting one blood vessel to another, not 2. Dr. Petterson is from Denmark and has been connecting the 2nd vessel over there for a while and wanted to incorp. his process in at Cleveland, but needs approval. They've seen quicker recovery time and better longevity with attaching both vessels, but it comes with the risk of the vessel detaching and hemorrhaging. Overall the risk isn't that much more than the current procedure. I dunno. I guess if I'm willing to take such a big leap of faith with the transplant in general, this is just a little step. Dr. Budev feels strongly that connecting both vessels will become standard protocol at Cleveland in a couple of years when they have their research completed.
She also said that she thought I would get transplanted soon. They've already done 6 (I think... long day, I can't remember exactly) and she said she would expect in the next 2 months. I got the green light to go back to school and work as a Medical Technologist after tx and I got the OK to reconsider the pill instead of getting my tubes tied just yet. I just wasn't ready for that mentally.
We then got in the car and attempted to come home... yes, I said attempted. There was limited visibility on the road due to snow and then Mom's car started acting strange. We got off the highway and found an autozone. They did a free diagnostic test and sent us to a Superlube to get the car worked on. While these people were a little strange, they were kind enough to get the car in and fixed in under an hour. Mom had to give them a little more info about me than I cared to share... but I had to sit in the waiting area doing my IV vancomycin.... we were already beyond personal in my book. I explained to them why I was doing IVs and going to Cleveland when I live in Cincinnati. Turns out they had a guy who worked there a few years back who has CF. He got sick this time every year and had to take 2-3 weeks off work (Gee... wonder what he was doing
) It was just a strange coincidence. Out of all the places we could have gone to, we ended up at one where people knew what CF was. Well, a couple of them. One of them asked if I was sick because of smoking. I should have said yes... maybe have deterred some of those men from continuing their nasty habit. Ok, so my meds are all done and I'm beat. All the IVs and benadryl and treatments and traveling... I can't wait for Tuesday to come and for me to be finished!
1 comments:
Hey Sweetie! So glad to hear about your progress. We continue to pray daily for your full recovery. We send our love and hugs and kisses to you. Keep on hangin tuff.
LOL,
Auntie M and Aunt Barb
PS. Appletinis have your name on them when your ready. (none for me, you know I can't handle them)
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