Update On My Health
This time last Sunday, my parents and I were almost in the Cleveland, OH area for my scheduled appointments the next day. I have been meaning to write about it since we got home last Monday, but every time I finally think about it, I've turned off the laptop for the day! So, here we go!
My echo appt was first, and since I was the only one waiting to have it done in that particular area of the hospital, I was called almost right away. The tech did a good job, and I was done in about half an hour. I had so much time left before my next appt, that I went up to the 7th floor to visit a phriend who'd been in the hospital for almost a month. Merle had had heart surgery, and the recovery process was taking a lot longer than she had thought. I brought her a card, and 4 sheets of paper with messages from phriends on Facebook! She wasn't able to read it right then, but later she texted to say how much it meant to her. I was happy to at least give her a little smile.
The next appt was in the cardiology department. I had to see the fellow, and then my adult congenital cardiologist. I really really like him, but unfortunately, the wait time to see him can sometimes be ridiculously long. This time around, it was 2 1/2 hours before he saw us! My parents were really not all that happy about it, but Dr. K explained that the patient before me had to be admitted into the hospital because he wasn't doing well. I guess that takes a lot of time. Anyway, he ended up spending about 40 minutes with us, answering questions and explaining things. He even asked me if he'd shown us my echo before, and when I said no, he pulled it up on the computer. My mom has never ever seen any of my echoes before, and I've been getting them done for 35 years!! So, I'm glad he spent that time with us in going over things!
Just a brief description before I go on with some of the things I heard: I have congenital heart disease (what I have is called atrioventricular canal, or AV Canal, and it's basically 2 holes in my heart), plus pulmonary hypertension. This combination is known as Eisenmenger syndrome. Many people living with Eisenmenger's normally have low oxygen levels. Our bodies adjust for this, and compensates for the low o2. And even though I am on o2, my saturation numbers don't really get any better.
Anyway, the reason I brought up the previous paragraph was because Dr. K made a comment during the appt that there is nothing that shows Eisenmenger patients benefit from using oxygen. I kinda just stared at him when he said that. But he explained to me that no matter how much o2 an Eisenmenger person is on, whether 2L, 4L, 15L, on oxygen tent, that it doesn't do anything to make the o2 sats get into the normal range. It has to do with the shunting in the heart and the way the oxygen is carried. And as a phriend of my explained it later, it's like trying to blow up a balloon with a pinhole at the end of it. The oxygen just doesn't stay in our bodies like it should. If that is the case, why was I ever put on it 10 years ago? Well, I'm not sure if anyone fully understood what I had when I started going to Cleveland Clinic, and my o2 sats are really very low, so the doctor I saw back then just thought I could seriously use the extra o2! Anyway, Dr. K wasn't telling me to just call up my o2 company and tell them to come get everything, and I wouldn't use o2 ever again. Honestly, as much a I would LOVE to see that happen, I can't imagine going without it. I definitely will keep wearing it while exercising, so my heart won't strain and enlarge. But if I just want to take a break from it while hanging out at home, I will. And I have been. Actually, I used to do it often, but now it's nice to know that I'm not really defying doctor's orders by taking it off for a bit. lol
Another thing Dr. K mentioned was that Eisenmenger patients often do not need a transplant. This doesn't mean they can't have one if it comes down to that. I have a friend who was an Eisenmenger person, and I met her after she'd had a transplant. I do hope that I will never need to go down the transplant road, but if I have to, I will. It's just nice knowing that I may never need to because of my specific condition. And thankfully, I can increase Revatio if I need to, and also try one of two inhaler meds if my situation starts to decline. Luckily, none of that is a concern right now!
After our appt with Dr. K, we were already late for my appts with the pulmonology department, so we ate some lunch before heading over to that building. Shortly after checking in, I was called by the tech to do my 6 minute walk, and to have a flight simulation test to see if I can tolerate being in a plane. I ran into my PH doctor in the hallway, and he asked me where I was going on vacation. What vacation?? He said since I wanted the flight test, that I must be going somewhere. lol I can't really afford going anywhere right now, but at least it would be good to know if I can ever take a flight somewhere!
My 6 minute walk was a bit lower than the one I did last year, but I finished the walk this time around, instead of being stopped 30 seconds before the end like last year because my o2 dipped below 60. I was put on 15L of o2 again, like last year. I purposely paced myself this time, and I think it's the reason for the drop in feet (or meters, depending on what results you see). The good thing was my legs weren't killing me or felt like lead while I was walking. I did feel as if I was more short of breath than usual, even though I did use pursed lip breathing. But considering I don't really pay attention to the results of the test anyway, and neither does my PH doc, it didn't matter to me. lol I told him before, those 6 minutes do NOT indicate how I feel the entire year it's been since I've seen him last!
The flight simulation test was next, and after the tech and Dr. G finally figured out how to do it based on my condition, she set me up on a cushy blue chair in the room, and put me on 5L of oxygen. Then she put a mask over on my face that had oxygen that was as if I was 1500ft in the air. I had to sit there for about 20 minutes to see if I dipped drastically below the 80 oxygen sats I started out with. I moved around a lot on the chair, and talked much of the time to the tech since I know I wouldn't sit like a stone in an airplane, and the lowest my o2 went was 79. So when I arrived at my destination 20 minutes later, Dr. G said that I could fly as long as I was on 5L of o2! Yay!
Dr G came into the room and sat down with me, and we chatted about what Dr K said regarding the oxygen use in Eisenmenger patients, how I've been feeling, med changes, and flying. It didn't feel like your normal appt! lol He did agree with Dr K about the oxygen, but said it's up to me if I want to see how I feel not using it. I asked him if I could add him on Facebook, since I heard him in the hallway say he had a page, and he said sure! And that was about it! I don't see him until next May again, unless something drastic changes throughout the year. So I went back out to the waiting room, and told my parents I was all finished. Dr G did see us getting ready to leave, so he came over to say hi to my parents. Then the only thing I had left to do was get my bloodwork done, and we were off back to Niagara Falls!
Since being home, I have been taking the oxygen off for a few hours at a time, but quite honestly, I can't seem to wrap my head around trying to go longer without it. I think it's more of a mental problem than an actual need! I'm still leaving the house wearing it. I haven't tried just putting the o2 in my car and seeing what happens if I'm in a store for a bit without it. So, I don't know. The news that I can try not using it if I want was exciting at first, but I think it would be a mental battle of epic proportions to actually wean myself down. lol I am just happy that my health is stable right now, and I pray every day it continues!!
My echo appt was first, and since I was the only one waiting to have it done in that particular area of the hospital, I was called almost right away. The tech did a good job, and I was done in about half an hour. I had so much time left before my next appt, that I went up to the 7th floor to visit a phriend who'd been in the hospital for almost a month. Merle had had heart surgery, and the recovery process was taking a lot longer than she had thought. I brought her a card, and 4 sheets of paper with messages from phriends on Facebook! She wasn't able to read it right then, but later she texted to say how much it meant to her. I was happy to at least give her a little smile.
The next appt was in the cardiology department. I had to see the fellow, and then my adult congenital cardiologist. I really really like him, but unfortunately, the wait time to see him can sometimes be ridiculously long. This time around, it was 2 1/2 hours before he saw us! My parents were really not all that happy about it, but Dr. K explained that the patient before me had to be admitted into the hospital because he wasn't doing well. I guess that takes a lot of time. Anyway, he ended up spending about 40 minutes with us, answering questions and explaining things. He even asked me if he'd shown us my echo before, and when I said no, he pulled it up on the computer. My mom has never ever seen any of my echoes before, and I've been getting them done for 35 years!! So, I'm glad he spent that time with us in going over things!
Just a brief description before I go on with some of the things I heard: I have congenital heart disease (what I have is called atrioventricular canal, or AV Canal, and it's basically 2 holes in my heart), plus pulmonary hypertension. This combination is known as Eisenmenger syndrome. Many people living with Eisenmenger's normally have low oxygen levels. Our bodies adjust for this, and compensates for the low o2. And even though I am on o2, my saturation numbers don't really get any better.
Anyway, the reason I brought up the previous paragraph was because Dr. K made a comment during the appt that there is nothing that shows Eisenmenger patients benefit from using oxygen. I kinda just stared at him when he said that. But he explained to me that no matter how much o2 an Eisenmenger person is on, whether 2L, 4L, 15L, on oxygen tent, that it doesn't do anything to make the o2 sats get into the normal range. It has to do with the shunting in the heart and the way the oxygen is carried. And as a phriend of my explained it later, it's like trying to blow up a balloon with a pinhole at the end of it. The oxygen just doesn't stay in our bodies like it should. If that is the case, why was I ever put on it 10 years ago? Well, I'm not sure if anyone fully understood what I had when I started going to Cleveland Clinic, and my o2 sats are really very low, so the doctor I saw back then just thought I could seriously use the extra o2! Anyway, Dr. K wasn't telling me to just call up my o2 company and tell them to come get everything, and I wouldn't use o2 ever again. Honestly, as much a I would LOVE to see that happen, I can't imagine going without it. I definitely will keep wearing it while exercising, so my heart won't strain and enlarge. But if I just want to take a break from it while hanging out at home, I will. And I have been. Actually, I used to do it often, but now it's nice to know that I'm not really defying doctor's orders by taking it off for a bit. lol
Another thing Dr. K mentioned was that Eisenmenger patients often do not need a transplant. This doesn't mean they can't have one if it comes down to that. I have a friend who was an Eisenmenger person, and I met her after she'd had a transplant. I do hope that I will never need to go down the transplant road, but if I have to, I will. It's just nice knowing that I may never need to because of my specific condition. And thankfully, I can increase Revatio if I need to, and also try one of two inhaler meds if my situation starts to decline. Luckily, none of that is a concern right now!
After our appt with Dr. K, we were already late for my appts with the pulmonology department, so we ate some lunch before heading over to that building. Shortly after checking in, I was called by the tech to do my 6 minute walk, and to have a flight simulation test to see if I can tolerate being in a plane. I ran into my PH doctor in the hallway, and he asked me where I was going on vacation. What vacation?? He said since I wanted the flight test, that I must be going somewhere. lol I can't really afford going anywhere right now, but at least it would be good to know if I can ever take a flight somewhere!
My 6 minute walk was a bit lower than the one I did last year, but I finished the walk this time around, instead of being stopped 30 seconds before the end like last year because my o2 dipped below 60. I was put on 15L of o2 again, like last year. I purposely paced myself this time, and I think it's the reason for the drop in feet (or meters, depending on what results you see). The good thing was my legs weren't killing me or felt like lead while I was walking. I did feel as if I was more short of breath than usual, even though I did use pursed lip breathing. But considering I don't really pay attention to the results of the test anyway, and neither does my PH doc, it didn't matter to me. lol I told him before, those 6 minutes do NOT indicate how I feel the entire year it's been since I've seen him last!
The flight simulation test was next, and after the tech and Dr. G finally figured out how to do it based on my condition, she set me up on a cushy blue chair in the room, and put me on 5L of oxygen. Then she put a mask over on my face that had oxygen that was as if I was 1500ft in the air. I had to sit there for about 20 minutes to see if I dipped drastically below the 80 oxygen sats I started out with. I moved around a lot on the chair, and talked much of the time to the tech since I know I wouldn't sit like a stone in an airplane, and the lowest my o2 went was 79. So when I arrived at my destination 20 minutes later, Dr. G said that I could fly as long as I was on 5L of o2! Yay!
Dr G came into the room and sat down with me, and we chatted about what Dr K said regarding the oxygen use in Eisenmenger patients, how I've been feeling, med changes, and flying. It didn't feel like your normal appt! lol He did agree with Dr K about the oxygen, but said it's up to me if I want to see how I feel not using it. I asked him if I could add him on Facebook, since I heard him in the hallway say he had a page, and he said sure! And that was about it! I don't see him until next May again, unless something drastic changes throughout the year. So I went back out to the waiting room, and told my parents I was all finished. Dr G did see us getting ready to leave, so he came over to say hi to my parents. Then the only thing I had left to do was get my bloodwork done, and we were off back to Niagara Falls!
Since being home, I have been taking the oxygen off for a few hours at a time, but quite honestly, I can't seem to wrap my head around trying to go longer without it. I think it's more of a mental problem than an actual need! I'm still leaving the house wearing it. I haven't tried just putting the o2 in my car and seeing what happens if I'm in a store for a bit without it. So, I don't know. The news that I can try not using it if I want was exciting at first, but I think it would be a mental battle of epic proportions to actually wean myself down. lol I am just happy that my health is stable right now, and I pray every day it continues!!
Comments
I am sure if you do it a little at a time it might become easier. It is also great to know you can take a flight if you want to. So where are you going?
I know this is not the same but with my neck brace I was given permission to remove it once a day for 1/2hr at a time up to 4 times a day now until surgery. The problem is it feels so much better on than off - so I only remove it for the basics of cleaning up. I am in more pain without it.
Prayers continue for you, love ya Deb