Daily Ponderings

Many PHers are on one or more of the following conventional drugs to treat symptoms: Calcium Channel Blockers (CCBs) - These are oral meds which relax the muscles around blood vessels which allows better blood flow. CCBs can also help to regulate heart rates. CCBs are only effective in less than 10% of PH patients. Digoxin - Digoxin can help the heart pump. It can also help regulate the electrical activity in the heart. It is an oral med taken once a day. I've been on this medication for over 35 years!! Warfarin (Coumadin) - Warfarin is a blood thinner taken once a day. It must be carefully regulated, so bloodwork is required often. Warfarin can be affected by foods and other medications, so a person taking it must make sure they monitor what they eat and the other things they ingest closely. I was on Coumadin for at least 10 years, and finally stopped it last year to try a baby aspirin instead. I can tell you that I don't miss Coumadin at all!!! lol Diuretics - These m...

As part of having pulmonary hypertension, I wear oxygen. I've been wearing it for the past 10 years at least. When I am out and about, I notice people looking at me, but I'm at the point where I don't care anymore. It's a part of who I am, and it gives me the ability to actually BE out and about!  I have gotten my share of random strangers coming up to me asking why I'm on oxygen. Many of them are older, some are also wearing oxygen, others are children. When I am asked why I'm on oxygen, I tell them I have pulmonary hypertension. I'd say about 99% of the people say, "Oh, I have high blood pressure, too!"  Well, that may be true, BUT, pulmonary hypertension has nothing to do with the high blood pressure everyone is familiar with! It is the OTHER hypertension. PH is high blood pressure in the lungs. If it is left untreated, it will eventually cause right-sided heart failure.  Oh, and by the way, my regular blood pressure is just fine, tha...

I have been a part of the PH community since October 2003, when I started my first medicine to treat PH symptoms, called Tracleer. Included with the first shipment of that med was a flyer for the PHA, so I sat down one morning and typed in the url in the search bar. I spent that day, and most of the week, in total awe. It was an emotional time, reading so many stories of other people who had PH and felt exactly how I felt my entire life. The shortness of breath, the extreme fatigue, the not being able to do anything strenuous without feeling terrible afterward. I cried much of the time. It was an entire new world to me, a world which I actually felt I belonged. I was no longer alone. While the message boards provided a huge wealth of information and personal stories, the chat rooms provided an instant connection. The first few times I ventured into the rooms, I felt totally at home. For anyone who hasn't had the experience of being in a chat room, I highly recommend it, although ...

Reflect on why you write about your health for 15-20 minutes without stopping. When I was growing up, I was the girl who had something wrong with her. I knew I couldn't keep up with my sisters and friends, I knew I couldn't participate in gym class or sports, and I knew that something was wrong with my heart. I knew that I went a few times a year to the doctor to make sure my heart was doing ok, but I didn't fully understand the scope of my situation as a child. I had two holes in my heart. I got so tired just trying to make the bed, or doing some of my chores, or running around the neighborhood playing hide and seek. That was the extent of the knowledge of my health situation. When I got into college, I still didn't really get what was wrong with me. By then I think I had only heard once or twice that I had pulmonary hypertension. I still have the handwritten piece of paper that my cardiologist gave me at some point that told me what I had: atrioventricular canal d...

Daylight savings time ended this past weekend, meaning that most everyone lost an hour of sleep. As much as I love the fact that we've gained more sunlight time in the evenings, trying to get used to those missing minutes is something I find really difficult. I've been so tired this week, trying not to nap for very long, but that doesn't always work. I'm hoping this feeling will end pretty soon! My weekend with K. was so nice. I can't believe how comfortable I feel with him, and that's been ever since we met. The oxygen situation worked out fine. I still wish he didn't have to return the machine, though. Considering they still haven't said anything to me about the one I have here, I don't think they would've missed the one I had used at K's. Oh well, I guess! At least we know that if I want to stay at his house again, we can arrange it so he can pick up a machine!

Ever since I've been on the liquid oxygen, I haven't been able to just decide to go somewhere for a few days or a week or whatever because I no longer have a concentrator to pack in the car (or van) and go. It's been the most frustrating thing to me! When I had my little fiasco a couple weeks ago with the liquid tanks, I was given a pediatric concentrator to use, but it only goes up to 2 liters, when I'm supposed to be on 3. I haven't given it back, and so far no one's asked for it! I'd like to hang on to it to make a "trade" if one of the o2 guys can do it, but who knows when that'll be. I guess I can use it if I need to, but I really would like a different one if it's possible! Maybe some day I can get that figured out! Anyway, about a month or so ago, my friend, Renee, announced plans to celebrate her 40th birthday. She wanted to go to a club in downtown Buffalo, and was hoping I'd be able to go as well! I asked K. about going, a...

Wednesday was just one of those days where everything seemed to go wrong. The worst part about it was that it involved the oxygen I'm supposed to use all day, every day, and the tanks that hold the liquid oxygen. I realized the day before that one of them wasn't working, and the other one had only 2 bars left. Considering that I get the tanks filled on Fridays, I knew I wouldn't really have enough to last until then! So Wednesday morning I called the office and told them that I now had no bars on the working tank, and no backup. That is the part that frustrates me the most. Ever since I got liquid oxygen, I have not been allowed to have a concentrator as back up in case something happens to the tanks and I'm stuck. Like Wednesday!! Anyway, the one guy doing the liquid o2 route called me back to find out what was happening, and told me he would rearrange his route to include me and that he'd be there before noon. Ok, sounds good. He got here and switched out the non-...

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...

Yesterday, I didn't feel like doing too much. It's not like I didn't have anything to do. I think the weather had a lot to do with it, though. It's been rather chilly and fall-like in temperatures, enough to have the heat on at night again. Maybe if I hadn't torn down the plastic already, it would still be warm?? I swear, April was warmer than May has been so far! Makes me wonder if summer is ever coming. I'm tired of wearing layers already!! What I did end up getting accomplished is ordering swarovski crystals and pearls for a phriend's wedding jewelry set. She asked me about a month and a half ago if I'd be willing to make her something, and I was so excited and honored that she thought of me. I just love doing special orders for people, and I try my best to really make something they will really love for a long time! I hope I can do her proud! I also went with my dad to the DMV after he got out of work. I gathered much of my paperwork that I thought I...