Daily Ponderings

The moment I was born, I was a sick baby, even though doctors couldn't figure that out until I was 9 months old. I don't know what it's like to be totally healthy. I spent the first 28 years of my life knowing I had 2 holes in my heart, and pulmonary hypertension (PH), although no one really explained that second half to my parents or myself. Then when my daily symptoms of shortness of breath, and extreme fatigue turned into an elephant sitting on my chest constantly, I was eventually introduced to the PH world. I started seeing doctors at the Cleveland Clinic in Ohio who specialized in the disease, plus a cardiologist for adults living with a congenital heart defect. I was eventually started on a PH medication, and that first shipment of medication almost 16 years ago led me to the online world of a PH community. From message boards to chat rooms, I suddenly realized that I WAS NOT ALONE!! The PH world became MY world for so long. I would read messages for hours, replying ...

Another summer-like day in October happened today, and that was alright with me! I am loving this weather, although I am very aware that it will end soon enough. I haven't yet switched over my wardrobe, and plastic hasn't been sealed up over the windows. I'm still hoping I can hold off on that for another couple weeks. We'll see! Today, I had a PH support group meeting. I've sort of lost count of how long I've run this support group, but I know it's well over 10 years. I enjoy having meetings, because I get to see my phriends! But, I REALLY enjoy the meetings where I have a speaker, which I've had for almost all the meetings this year. It's very hard to come up with new topics after having a support group for so long, especially when not too many new people show up, or come once and then never again. I have repeated a few topics, but there are still a few that I haven't had at all. So, I need to prepare for next year's meetings soon so I ca...

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 ...

This afternoon I had to get some blood work done for two different doctors. One script was for my regular testing to make sure my liver still likes the PH medication I've been on for almost 14 years, and to make sure I'm not pregnant (don't really need to do it, I know I'm not lol), and the other script was to check hormones, thyroid and a few other things for a problem I've been having. I went after volunteering, and the place was nice and quiet, so I was out of there shortly after. Before I left the building, I decided to use the ladies' room. While I was washing my hands, I looked in the mirror and noticed all the gray hairs that were coming out of the top of my head. My normal reaction to seeing them is "Ugh, I really need to get my hair done!" But today, my instant reaction to seeing them was: "I should be thankful I have gray hairs, because it means that God's allowed me to age." It took me aback that THAT thought popped into my h...

Today is the last day for Pulmonary Hypertension Awareness Month. I'd like to think I helped spread some awareness through my blog, my Facebook statuses (which were the same as  my blog, mostly lol), and this year, through my PH display at 2 hospitals! I'm very happy I was given permission to do the display, and I am hoping I can do it all over again next November! Until then, I will continue to try making people aware of this crappy disease, because: -Anyone can have PH -Age and gender make no difference -The symptoms mimic other illnesses, so a person can be misdiagnosed for years -If not treated as soon as possible, it can lead to right heart failure

I get asked often when I'm seen by someone wearing the oxygen if I used to smoke. No. Never. Dated a smoker a long time ago, and it almost felt like I was smoking, but no. I've never touched a cigarette. PH is NOT caused by smoking. There is my simple PH fact of the day!

I wrote this a few weeks ago to include on my PH display board since I had some space and needed something to fill it!! Since I'm winding down on PH Awareness month, I thought I'd share this info again! Pulmonary hypertension Is NOT High blood pressure ***** Pulmonary hypertension Is NOT Asthma ***** Pulmonary hypertension Is NOT COPD ***** Pulmonary hypertension Is NOT Obesity ***** Pulmonary hypertension Is NOT Sleep apnea ***** Pulmonary hypertension IS High blood pressure in the lungs ***** Pulmonary hypertension IS Life-threatening if not treated ***** Pulmonary hypertension IS Diagnosed by right heart cath ***** Pulmonary hypertension IS Treatable ***** Pulmonary hypertension IS Life changing

The combination of my PH and congenital heart disease is known as Eisenmenger's syndrome. A phriend's mother posted all about Eisenmenger's today on Facebook, because her daughter also has Eisenmenger's syndrome. Since Jane let me, I'm just copying and pasting her post here! Eisenmenger's is also considered a rare disease by NORD. I couldn't find out approximately how many people have the disorder though but it has to be under 200,000.  Eisenmenger syndrome progresses over time as a result of a complication of a heart defect and the effects of high bl ood pressure in the lungs. This hole in your heart causes blood to flow or circulate abnormally in your heart. Oxygen-carrying blood (red blood) from the left ventricle mixes with oxygen-poor blood (blue blood) from the right ventricle. This mixed blood then returns to your lungs instead of going to the rest of your body, causing high blood pressure in your lungs. High blood pressure in your lungs (pulmonar...

Quite a few years ago, I heard about the Spoon Theory , a story written by a woman, Christine Miserandino, who is living with Lupus. She was trying to explain to a friend how she deals with her energy every day, and the friend didn't get it. So she explained it by using spoons.  The Spoon Theory is a story that can fit almost anyone living with a chronic disease, not just Lupus. It completely fits the life of someone dealing with pulmonary hypertension. There are some days when I might have a ton of spoons, and I can do a bunch of things and feel pretty decent. There are even days when I miraculously end up with some extra spoons by the end of the day! And then there are those days when I might drop all  my spoons on the floor the minute I get out of bed in the morning. I have often used this story to explain to my family and friends how it feels to live with PH. They seem to understand when I tell them I don't have enough spoons to deal with something. It sucks, bu...

The first ever reported case of Pulmonary Hypertension was recorded 121 years ago. 37 years ago, still not much was known about the disease. Today, we have 9 FDA-approved medications to help improve symptoms experienced by the disease. There is still no cure. YET.

Nothing makes my heart start racing with immense anxiety when I am faced with something most people take for granted: stairs. Or, a hill. I immediately think, "Oh crap, I have to get up that! I'm gonna die!" It may sound silly, but I truly hate the feeling of a rapid heartbeat and being so short of breath I think I might pass out. And the sad thing is, I've been slowly increasing the grade on the treadmill at rehab so I can face stairs or a hill a lot better. I do think it's helped me a little, but I still have that fear of climbing!! So, here's a PH tip for going up stairs: Go up backwards. Seriously, I have heard some PHers talk about this, but all I could think was how utterly ridiculous that must look! Well, I tried it several times this summer. And guess what? You look utterly ridiculous, BUT, it's so much better than going up the regular way! I would get to the top and realize I wasn't going to die! The shortness of breath was minimal, and my ...

Today is Thanksgiving here in America, and it happens to be a favorite holiday of mine. Mainly because of the food! lol No really, Thanksgiving is great to spend time with family and friends, and to eat. A lot. :) I happen to be thankful for so many things. My family is my life, my friends are wonderful, and my health is stable at this point in time. I have a roof over my head, clothes to wear, and a very loving "kid" I just adore. And it may seem odd to say this, but in a way I'm thankful for PH. Obviously I don't love having this illness, nor do I wish it upon anyone. But what I'm thankful for is that it's given me a sense of purpose. It's allowed me to help others. It's given me time. Time to spend with my family and friends since I don't work. It's given me the ability to empathize, to feel a connection and understanding with those dealing with PH or any sort of illness. It's allowed me to appreciate the little things in life. Had I...

Have you ever wondered how it actually felt to have pulmonary hypertension? I mean, I can say to you that I get short of breath just making my bed sometimes.  Getting dressed some days, especially after a shower, can be a challenge. And in the winter, if I happen to go out to a store by myself, I drive right back home if I can't find a handicap parking spot because I know parking any farther will make me gasp by the time I get into the store. But are you wondering what that actually FEELS like? Well, try this experiment. Walk up a flight of stairs. But walk up those stairs breathing through a straw. Not just any straw. Use a straw meant for stirring coffee. While you're at it, plug your nose while going up those stairs, breathing only through that tiny straw. Are you gasping for breath by the time you get up there? Is your heart racing, feeling like it's going to bound out of your chest down the street? Yeah? Well, now you know what it feels like I try to vacuum one rug...

I was never allowed to take gym when I was going to school. I really can't remember what I used to do in grade school when my class walked down the street to the gym. Most likely it was just staying in the classroom doing something. In middle school, I would walk down to the 1st grade to help out the teacher. It was then that I realized I wanted to become a teacher myself! Many times a person might change their mind about "what they wanted to do when they grew up." I never did. I went to high school, and by the time I graduated, I still knew that teaching was what I was supposed to be doing. I got my undergrad degree in elementary education, and after that I started subbing. At that time, I didn't have to go to grad school for my Master's right away, unlike now. I'm actually happy about that, because I didn't know what I wanted to study. Subbing lasted for a month before I got a job as a teacher at a day care. That job lasted two months before I became a p...

So what do you do with a child who has a disability? And what do you do with a child who may or may not live for very long? Well, you do what is most important: you love her and let her live life as best she can. I spent my childhood playing with my sisters (whom I affectionately call sistores), running around with them, but always taking breaks. My mom signed me up for dance lessons, but I only made it through one class before she realized I wasn't doing that great. So I took organ lessons. I joined the Girl Scouts, which was fairly easy for me to do. I did Art Wheels. I did what I could do to have some fun. I lived my life! Yes, there were many hard times. Yes, I very often got short of breath running around. Yes, I took a LOT of naps. And I still do! Yes, I got sick often.  But I learned my limits, pushed past them many times, but I did ok. And I think the biggest reason why I'm still here today is because of my parents, especially my mom, and my sistores. I love my family d...

My personal PH journey began when I was diagnosed at 9 months old. After two trips to a free clinic to get my shots, and the same doctor at the clinic insisting something serious was wrong with my heart, my parents took me to a cardiologist at Buffalo Children's Hospital. I was immediately taken to the back despite the room full of parents waiting their turn to see the doctor. Apparently I looked a bit too blue. After many tests, including a right heart catherization, it was determined that I had a severe heart defect (atrioventricular canal), and pulmonary hypertension. This meant that I was born with both problems, and no one knew until 9 months later. The AV canal - which is an atrial septal defect (ASD) and a ventricular septal defect (VSD) - could not be repaired by the time it was found. My parents were pretty much told to take me home and love me the best they could, because it was unknown how much time I'd have here. I can't imagine what they must have felt being to...

A person gets slammed with a diagnosis of PH, probably after months or even years of trying to figure out what is wrong with their body. What in the world do they do now?? Who do they talk to about it? Family and friends may try to understand, or may not even be supportive. Finding other people who also live with PH can help a "newbie" in so many ways. Many years ago, before the internet changed the world, it was rather hard meeting people with PH. Today, the world wide web can bring people together in chat rooms, message boards, and social networking sites.Websites, such as the PHA and PH Central, can also provide information on how to get in touch with a PHer in person, through support groups. A newly diagnosed PH patient does not have to feel so alone with their disease!

Although PAH can be diagnosed in anyone regardless of age, race, or gender, there are certain risk factors that can make some people more likely to get the disease. These risk factors include: -Family history -Obesity and obstructive sleep apnea -Gender -Pregnancy -Altitude -Other diseases -Drugs and toxins You can read more about these risk factors HERE !

All of the PAH medications come with side effects. Some people experience side effects for a little while, and then they don't deal with them any longer. Some people have side effects constantly. Side effects can include one or more of the following, depending on the medication(s) being taken: -Dizziness -Low blood pressure -Fluid retention -Irregular heart rhythms -Nausea -Excessive bleeding -Dehydration -Nosebleeds -Liver failure -Blurry vision -Loss of hearing -Headaches -Anemia -Nasal congestion -Sinusitis -Flushing -Muscle pain -Heartburn -Diarrhea -Jaw Pain -Bone pain -Rashes -Itching -Swelling

I talked about Remodulin yesterday as being an IV medication to treat PAH symptoms. Remodulin can also be administered subcutaneously, meaning, under the skin. Subq Remodulin works in the same way as IV and inhaled Remodulin, by relaxing the blood vessels to allow more blood to flow and carry oxygen around, which then allows the heart to pump easier. Subq Remodulin requires site changes every so often, and are usually put into the abdominal region. Subq Remodulin can be quite painful for most users.