Cleveland!
My parents picked me up around 12:30ish on Sunday afternoon, piled all my stuff in the van, and we took off for Cleveland. It was the worst trip!! The weather was horrendous almost the whole way there. The winds were so high, I don't know how my dad had control of the van most of the time. We also had to go through many whiteout conditions, which were completely scary!! I think I prayed the entire way there that we'd make it safely, and that everyone else in the road got to wherever they needed to go in one piece, too. My dad told me once we got to the hotel that we'd never go in conditions like that again. Can't say I blame him!!
After getting to the CCF the next morning on time (despite the fact we took over an hour to get there even though it takes about 20 minutes from the hotel), I spent over an hour waiting to get my echo done. I had even been 15 minutes early in getting there! Because of that, I ended up being late for everything else, but there wasn't much I could do about it! I got my bloodwork done after the echo, then had a chest xray. Then I had the dreaded 6mw. I was really tired during the walk, but I pushed myself on! I ended doing a tad bit better on the walk than the last time, but the thing I was impressed by most was that my o2 sats didn't drop so drastically low like they can while I walk! I'm going to post what it was, but I wanted to give Sheila a warning (since I know she reads this) not to look because I'm sure the numbers will still scare her!! LOL!! I have dropped to as low as 48 before, but yesterday I dropped to about 66! So that's a big improvement! Despite not being able to tell if the Revatio has been helping, I guess it must be!
I talked to my doctor later about how I was doing. He said the pneumonia wasn't showing up in the xray I had, which is good. I told him my lung still bugs me once in awhile, but he said I'm probably just still recooperating. He asked me if I wanted to up my dose of Revatio to 40mgs 3x a day, even though he didn't think I needed to at this point, and I said no. I didn't really get to see if the regular dose was working before I got the pneumonia, so I'd like to continue getting better, and seeing how it's helping without changing anything right now. So nothing is changed at this point!
I did ask him about pulmonary rehab, and the first thing out of his mouth was exactly what I had thought of when I thought about going: I'm going to scare the crap out of anyone working with me because of my low o2 sats!! LOL!! He did say that he'd like me to see the adult congenital cardiologist there first, before we do anything about rehab. I agreed. I can't see myself doing rehab right now anyway yet. I still think I need a couple months to get myself back into walk, even if I only start with a couple minutes at a time on the treadmill. So the next time I go to Cleveland, maybe in May or June, I'll see the cardiologist and talk about it then!
We were getting ready to go down and have lunch before we hit the road back home, when I got to meet Merle!! She is a phriend that I've been talking to for a long time online through the PHA website. We both have the same specialist, and we happened to have appts on the same day! It was wonderful meeting her, and her husband, Tom. We chatted for maybe 10 minutes before she had to get registered in, and we were off to lunch. I'm soooooo mad, however, for not remembering to take a picture of us together!! Grrrrrr!!! She forgot, too, and she had her camera in her hand!! LOL! Chalk it up to two PHers having a PH moment!!
The trip home was pretty good, until we hit NY. Certain areas were very snowy, but it wasn't as terrible as Sunday, thank goodness! We got back into town around 6pm, and we met Mandy, Ron and the kids, and Joan and her boyfriend, Rick at Old Country Buffet. They had coupons for dinner, so we decided to go. My parents and I got there first, and when we pulled up, a lady came to our van and asked if we were going to eat there. We said yes, and she told us that they just closed their doors that morning, and were no longer in business! That really sucked! Joan and Rick pulled up, so we told them about it. After talking to them, and making a call to Mandy, we all decided to go to the chinese buffet instead. It was alot of fun, and I got to see my niece and nephew! My niece sat between my mom and I, and she kept wanting things off my plate. It was cute! By the time my parents dropped me off at home, and got my stuff in the house, I was so exhausted. It was just a very very tiring 48 hours, that's for sure! But I'm glad that everything went well, besides the traveling!
After getting to the CCF the next morning on time (despite the fact we took over an hour to get there even though it takes about 20 minutes from the hotel), I spent over an hour waiting to get my echo done. I had even been 15 minutes early in getting there! Because of that, I ended up being late for everything else, but there wasn't much I could do about it! I got my bloodwork done after the echo, then had a chest xray. Then I had the dreaded 6mw. I was really tired during the walk, but I pushed myself on! I ended doing a tad bit better on the walk than the last time, but the thing I was impressed by most was that my o2 sats didn't drop so drastically low like they can while I walk! I'm going to post what it was, but I wanted to give Sheila a warning (since I know she reads this) not to look because I'm sure the numbers will still scare her!! LOL!! I have dropped to as low as 48 before, but yesterday I dropped to about 66! So that's a big improvement! Despite not being able to tell if the Revatio has been helping, I guess it must be!
I talked to my doctor later about how I was doing. He said the pneumonia wasn't showing up in the xray I had, which is good. I told him my lung still bugs me once in awhile, but he said I'm probably just still recooperating. He asked me if I wanted to up my dose of Revatio to 40mgs 3x a day, even though he didn't think I needed to at this point, and I said no. I didn't really get to see if the regular dose was working before I got the pneumonia, so I'd like to continue getting better, and seeing how it's helping without changing anything right now. So nothing is changed at this point!
I did ask him about pulmonary rehab, and the first thing out of his mouth was exactly what I had thought of when I thought about going: I'm going to scare the crap out of anyone working with me because of my low o2 sats!! LOL!! He did say that he'd like me to see the adult congenital cardiologist there first, before we do anything about rehab. I agreed. I can't see myself doing rehab right now anyway yet. I still think I need a couple months to get myself back into walk, even if I only start with a couple minutes at a time on the treadmill. So the next time I go to Cleveland, maybe in May or June, I'll see the cardiologist and talk about it then!
We were getting ready to go down and have lunch before we hit the road back home, when I got to meet Merle!! She is a phriend that I've been talking to for a long time online through the PHA website. We both have the same specialist, and we happened to have appts on the same day! It was wonderful meeting her, and her husband, Tom. We chatted for maybe 10 minutes before she had to get registered in, and we were off to lunch. I'm soooooo mad, however, for not remembering to take a picture of us together!! Grrrrrr!!! She forgot, too, and she had her camera in her hand!! LOL! Chalk it up to two PHers having a PH moment!!
The trip home was pretty good, until we hit NY. Certain areas were very snowy, but it wasn't as terrible as Sunday, thank goodness! We got back into town around 6pm, and we met Mandy, Ron and the kids, and Joan and her boyfriend, Rick at Old Country Buffet. They had coupons for dinner, so we decided to go. My parents and I got there first, and when we pulled up, a lady came to our van and asked if we were going to eat there. We said yes, and she told us that they just closed their doors that morning, and were no longer in business! That really sucked! Joan and Rick pulled up, so we told them about it. After talking to them, and making a call to Mandy, we all decided to go to the chinese buffet instead. It was alot of fun, and I got to see my niece and nephew! My niece sat between my mom and I, and she kept wanting things off my plate. It was cute! By the time my parents dropped me off at home, and got my stuff in the house, I was so exhausted. It was just a very very tiring 48 hours, that's for sure! But I'm glad that everything went well, besides the traveling!
Comments
However, I am so glad that they were 66 and not 48 but STILL THAT IS NOT GOOD!!! OH MY GOSH I still freak out over them. LOL!! Thank you for warning me though!
Glad you are home safe and sound you know I am concerned about that.
It is wonderful you got to meet Merle and it is okay you guys forgot the picture. HELLO you were to excited to think of everything. LOL!!
Love ya,
Sheila
Sounds like a very scary and tiring ride. So glad you all made it there and back safe.
Sounds like a nice dinner with the family:))
That is so cool that you met Merle!! Thats ok about the pic, I have been having those PH days too!!!
Take care
Hugs,
Jen
I am glad you made to and from your appointment safely. I hate traveling in white out conditions. I hope you continue to improve and get stronger.
It sounds like you are a nice aunt. So, did you share some things off your plate with her? Just curious. I can remember sitting with an aunt and wanting everything she had on my plate. Just brought back memories.
Love
Kristi