Cleveland, Resting and Birthdays, Oh My!
This past weekend flew by so quickly! It's hard to believe it's already Monday again. So, I'll sum up the weekend (which means, I will elaborate on everything lol).
Friday was spent with my Dad at the Cleveland Clinic for my annual check up. We left a little after 6am since my first appointment was at 10 and it takes about 3 hours to get there. But, I'd been up since 4:45 for whatever reason, so I was rather tired! When we got to the Clinic, I had my first appointment, which was an echo. The technician who did mine was so thrilled because he never gets congenital heart defects, and he said I was the most exciting case he was going to have all day (granted, it was 10am, I sure hope I wasn't the only interesting case lol). After that was over, I got some blood work done, and then my Dad and I had time to eat some late breakfast/early brunch before my next appointment. The Clinic has different cafes in many of their buildings for people to get something, and the one we went to was small, but had a variety of offerings. I had an egg sandwich and my Dad had a tuna one. Both were yummy!
My appointment with my cardiologist's PA was next, and she spent a good 45 minutes with us because she was asking questions, I was making lots of comments and anecdotals, and we were sharing laughs. She went over my echo with me, and said even though it hadn't been read by the doctor yet, my heart looked in good shape and was functioning well. Although the echo only estimates the pulmonary artery pressures (whereas a right heart catherization would give the EXACT pressures) to decipher if someone has PH, my pressures are always so high on echos that it's a definite given that I have PH. That being said, last year my estimated pressures were 116. This year, they were 94! I'm not sure what would have made them that much lower, but I was happy to know it went down. All in all, that appointment went well, and it was off to the Crile building for the pulmonary part of my schedule.
First, I had my 6 minute walk test, a test that I find completely useless because those 6 minutes do not represent how I feel within the entire year I see my doctors. But, it's a fairly simple test and doesn't cost as much as getting constant right heart caths to measure how a PH patient is doing. During the test, I usually have to wear 15L of oxygen by using a full face mask, and I have a pulse ox monitor strapped to my forehead to read how my saturation levels and heart rate are doing while I walk. I can stop or slow down if I need to during the walk, but if I stop to catch my breath, the clock still ticks down regardless. I've never stopped myself during a walk, because I am hard-headed and feel I need to just keep going. But, I do sometimes slow myself down. My walk showed at one point that my lowest oxygen reading was 56 (yes, very low and deadly for most people, me....well I was just really tired but ok lol). I also did several feet/meters less than last time, but it basically didn't mean much. After that was all finished, I got my vitals done by a nurse, and then it was time to see my PH doctor!
Dr. H is a great doctor (I think so, anyway!). I've only seen her a few times because she's fairly new to the Clinic, but definitely not new to the PH community. Last year, when I mentioned being a support group leader in WNY, she immediately said she'd love to come up and do a meeting for me! She did come up in August, and it was great! Anyway, she asked how I'd been doing and feeling. Like I told my cardiologist's PA, I get more tired and short of breath this time of year with the weather changing, but it's something I'm used to. We talked about all the exercising I'm still trying to do, if I'm going to get a flu shot (not until October!), and if I was allowed to donate blood (she said probably not a good idea, which made me sad since I have the blood they are always looking for lol). She said she'd see me next year! But before we left, I asked about the need of an antibiotic if I were to get a tattoo. First she looked to see if I had one already, because I asked her last year if I could get one, and she said yes. However, it's been a year, and I am still ink-free. lol She did end up sending a scrip to my pharmacy while I was there for a 3 day regimen of antibiotics for whenever I DO decide to get a tattoo, and told me she wants to see it the next time I come! I guess I better get on that!!
My Dad and I stopped for a snack before starting part of the drive home. We had dinner when we got to Erie, PA at a Cracker Barrel, and got home finally after 9pm. It was a VERY long day, and I was happy when it was finally time for bed!!
Now, this is a part of the trip that I loved the most: Friday was Euan's birthday. In the (very) early morning when I was getting ready for the trip, I was talking to Euan out loud and said how much I missed him. I also said that if I somehow saw a butterfly during that day, that I knew it would be him letting me know that he was around. So, my day progressed in the above mentioned manner. When my Dad and I got to the Crile building for my pulmonary visit, I had to check in at the desk. The lady who called me over was very nice (she's been there for years, I wish I could remember her name), and asked me for some personal info. As I was waiting for her to type things in on her computer, I happened to glance at the corner of her monitor, and there was a blue butterfly. I immediately welled up with tears! So, then I shared the story of Euan with the lady and told her about the butterfly, and that her butterfly was a sign I believed that came from Euan, and SHE got teary-eyed! After my visit with Dr. H, I went back to the lady and asked if I could take a picture of the butterfly, and she said yes. I thought that was so very special!!
Saturday I tried to sleep in, which I did a little bit. I was hoping to go near the water since it was a gorgeous day, but I just felt terrible. I think it was a combination of factors, but as much as I wanted to do something, I ended up staying at home and trying to rest, especially because I didn't want the next day to be crappy!!
Sunday did end up being a better day! I had a nice birthday shower, a nice birthday breakfast (ok, it wasn't exactly fancy, but it was good lol), and met my family down at The Silo in Lewiston for lunch. It was another beautiful day out, so being near the water was perfect! I'm kind of irritated that this summer weather has FINALLY showed up when I wish it had actually been around for most of the actual summer! But, I digress. LOL I had a nice time with my family, though! My Mom was nice enough to make me gluten-free cupcakes (so Mandy could eat one) with chocolate frosting!
I got back home in time to watch the second half of the Bills game, which they lost. Boo!! I then relaxed a bit before getting ready to go to a phriend's 60th birthday party! We share the same birthday! He invited me a couple weeks ago, and told me that everyone had to try to wear white. It was held at the Four Points Sheraton hotel in Niagara Falls, which was beautiful because it overlooked the river. I really had a nice time there! There was so many people to celebrate his special day, and he let it be known to many that it was also MY special day. lol There was a buffet for dinner, brownies and cookies with tea and coffee, and also ice cream and pound cake for dessert. There was a DJ for awhile, and a great band after dinner. I stayed and talked to people and enjoyed the music until I finally took off a little after 8:30 so I could go home and relax for the rest of my birthday.
I am incredibly blessed to be 42. I may say that every year, and I will still say it for every birthday I get. God must have a good reason for me to still be around, and I truly feel so grateful for being here every day. I am thankful for my relatively good health. I'm thankful for being able to exercise and try to keep my body in shape. I am thankful for having a my own place, with my own little kitty girl, and that I can eat every day, and I try to eat healthy. I'm so thankful for my family and friends who surround me with love and prayers when I need them or ask for them. I'm just so thankful for so many things. I will keep praying to be allowed to be on this planet for even another decade, because I know that I am meant to be here for others in any way I can be!!
And on that note, I must get myself to bed so that I can get some rest, and hopefully enjoy another day tomorrow on this beautiful planet!
Friday was spent with my Dad at the Cleveland Clinic for my annual check up. We left a little after 6am since my first appointment was at 10 and it takes about 3 hours to get there. But, I'd been up since 4:45 for whatever reason, so I was rather tired! When we got to the Clinic, I had my first appointment, which was an echo. The technician who did mine was so thrilled because he never gets congenital heart defects, and he said I was the most exciting case he was going to have all day (granted, it was 10am, I sure hope I wasn't the only interesting case lol). After that was over, I got some blood work done, and then my Dad and I had time to eat some late breakfast/early brunch before my next appointment. The Clinic has different cafes in many of their buildings for people to get something, and the one we went to was small, but had a variety of offerings. I had an egg sandwich and my Dad had a tuna one. Both were yummy!
My appointment with my cardiologist's PA was next, and she spent a good 45 minutes with us because she was asking questions, I was making lots of comments and anecdotals, and we were sharing laughs. She went over my echo with me, and said even though it hadn't been read by the doctor yet, my heart looked in good shape and was functioning well. Although the echo only estimates the pulmonary artery pressures (whereas a right heart catherization would give the EXACT pressures) to decipher if someone has PH, my pressures are always so high on echos that it's a definite given that I have PH. That being said, last year my estimated pressures were 116. This year, they were 94! I'm not sure what would have made them that much lower, but I was happy to know it went down. All in all, that appointment went well, and it was off to the Crile building for the pulmonary part of my schedule.
First, I had my 6 minute walk test, a test that I find completely useless because those 6 minutes do not represent how I feel within the entire year I see my doctors. But, it's a fairly simple test and doesn't cost as much as getting constant right heart caths to measure how a PH patient is doing. During the test, I usually have to wear 15L of oxygen by using a full face mask, and I have a pulse ox monitor strapped to my forehead to read how my saturation levels and heart rate are doing while I walk. I can stop or slow down if I need to during the walk, but if I stop to catch my breath, the clock still ticks down regardless. I've never stopped myself during a walk, because I am hard-headed and feel I need to just keep going. But, I do sometimes slow myself down. My walk showed at one point that my lowest oxygen reading was 56 (yes, very low and deadly for most people, me....well I was just really tired but ok lol). I also did several feet/meters less than last time, but it basically didn't mean much. After that was all finished, I got my vitals done by a nurse, and then it was time to see my PH doctor!
Dr. H is a great doctor (I think so, anyway!). I've only seen her a few times because she's fairly new to the Clinic, but definitely not new to the PH community. Last year, when I mentioned being a support group leader in WNY, she immediately said she'd love to come up and do a meeting for me! She did come up in August, and it was great! Anyway, she asked how I'd been doing and feeling. Like I told my cardiologist's PA, I get more tired and short of breath this time of year with the weather changing, but it's something I'm used to. We talked about all the exercising I'm still trying to do, if I'm going to get a flu shot (not until October!), and if I was allowed to donate blood (she said probably not a good idea, which made me sad since I have the blood they are always looking for lol). She said she'd see me next year! But before we left, I asked about the need of an antibiotic if I were to get a tattoo. First she looked to see if I had one already, because I asked her last year if I could get one, and she said yes. However, it's been a year, and I am still ink-free. lol She did end up sending a scrip to my pharmacy while I was there for a 3 day regimen of antibiotics for whenever I DO decide to get a tattoo, and told me she wants to see it the next time I come! I guess I better get on that!!
My Dad and I stopped for a snack before starting part of the drive home. We had dinner when we got to Erie, PA at a Cracker Barrel, and got home finally after 9pm. It was a VERY long day, and I was happy when it was finally time for bed!!
Now, this is a part of the trip that I loved the most: Friday was Euan's birthday. In the (very) early morning when I was getting ready for the trip, I was talking to Euan out loud and said how much I missed him. I also said that if I somehow saw a butterfly during that day, that I knew it would be him letting me know that he was around. So, my day progressed in the above mentioned manner. When my Dad and I got to the Crile building for my pulmonary visit, I had to check in at the desk. The lady who called me over was very nice (she's been there for years, I wish I could remember her name), and asked me for some personal info. As I was waiting for her to type things in on her computer, I happened to glance at the corner of her monitor, and there was a blue butterfly. I immediately welled up with tears! So, then I shared the story of Euan with the lady and told her about the butterfly, and that her butterfly was a sign I believed that came from Euan, and SHE got teary-eyed! After my visit with Dr. H, I went back to the lady and asked if I could take a picture of the butterfly, and she said yes. I thought that was so very special!!
Saturday I tried to sleep in, which I did a little bit. I was hoping to go near the water since it was a gorgeous day, but I just felt terrible. I think it was a combination of factors, but as much as I wanted to do something, I ended up staying at home and trying to rest, especially because I didn't want the next day to be crappy!!
Sunday did end up being a better day! I had a nice birthday shower, a nice birthday breakfast (ok, it wasn't exactly fancy, but it was good lol), and met my family down at The Silo in Lewiston for lunch. It was another beautiful day out, so being near the water was perfect! I'm kind of irritated that this summer weather has FINALLY showed up when I wish it had actually been around for most of the actual summer! But, I digress. LOL I had a nice time with my family, though! My Mom was nice enough to make me gluten-free cupcakes (so Mandy could eat one) with chocolate frosting!
I got back home in time to watch the second half of the Bills game, which they lost. Boo!! I then relaxed a bit before getting ready to go to a phriend's 60th birthday party! We share the same birthday! He invited me a couple weeks ago, and told me that everyone had to try to wear white. It was held at the Four Points Sheraton hotel in Niagara Falls, which was beautiful because it overlooked the river. I really had a nice time there! There was so many people to celebrate his special day, and he let it be known to many that it was also MY special day. lol There was a buffet for dinner, brownies and cookies with tea and coffee, and also ice cream and pound cake for dessert. There was a DJ for awhile, and a great band after dinner. I stayed and talked to people and enjoyed the music until I finally took off a little after 8:30 so I could go home and relax for the rest of my birthday.
I am incredibly blessed to be 42. I may say that every year, and I will still say it for every birthday I get. God must have a good reason for me to still be around, and I truly feel so grateful for being here every day. I am thankful for my relatively good health. I'm thankful for being able to exercise and try to keep my body in shape. I am thankful for having a my own place, with my own little kitty girl, and that I can eat every day, and I try to eat healthy. I'm so thankful for my family and friends who surround me with love and prayers when I need them or ask for them. I'm just so thankful for so many things. I will keep praying to be allowed to be on this planet for even another decade, because I know that I am meant to be here for others in any way I can be!!
And on that note, I must get myself to bed so that I can get some rest, and hopefully enjoy another day tomorrow on this beautiful planet!
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