Monday, November 29, 2010

A lung transplant is usually a last resort for a pulmonary hypertension patient if all other meds are not working or have stopped working well. It is up to the PHer if they want to go through a transplant or not. Having a transplant may mean a cure from PH, but it is not without problems. However, there are many PHers who have survived for many more years with their new lungs!

I have had many phriends who have either had a lung transplant many years ago, or who've had one recently, or who are still waiting. There are some who are doing well, past 10 years with their new lungs! There are a few who didn't make it past a few years with their new lungs. Many phriends who have faced the transplant option have decided to go for it, but I do know a few who do not want to have surgery. It's a personal choice, because it's really trading one disease for a whole other set of problems. But for those who get through transplant and recovery well, their lives change so much, and they are able to do so much more than they could before.

As I type this, I have a phriend who is hopefully going to be awakened from sedation at some point today. He received his gift of new lungs on Saturday! So far, he's doing well, I'm just hoping recovery will be smooth for him!

Sunday, November 28, 2010

All day events with no rest usually make a PHer pretty tired. I suppose anyone could be rather tired from something like that, but for someone with PH, it usually means the next day is already planned as a rest day. Today was one such day for me, although it was a great day! The holiday event went well, and most of the people who bought things from me were people I already knew. But that's ok! It was fun, though, talking to people she's never met and selling something to them. Makes me happy! At the end of the event, since we had one last minute person added to the group, I was given $15 to donate to the PH Association instead of everyone getting a dollar back for the purchase of a table. I thought that was so nice! Now I'm home for the evening, and taking it easy!! This week I'll be able to work on orders that I've gotten in the past week or so. I'm so thankful to be keeping busy!

Saturday, November 27, 2010


When someone with PH eats waaay too much, they get increased shortness of breath. This is because the stomach is so full that it's pushing everything up and the lungs get more constricted, making it a bit harder to breathe!

This is what happened to me on Thanksgiving! lol Our family went non-traditional this year. None of us really felt like cooking the huge meal, so we ordered Chinese food instead. We had to buy it the night before, so it did end up being a bit of work trying to fit everything into glassware that could be shoved in the oven to reheat, or into something microwaveable. And of course, we had sooo much food! But it was a great meal, and everyone enjoyed it and the company! Mandy came over with her little family to have dessert (we still had pies!), and it was a very nice evening spent with my family. I don't think it matters what we eat on Thanksgiving, as long as we are together and having a good time is what counts!

I got home from my parents' and took a bath to warm up, and then tried to keep my eyes open long enough to do some shopping on I just can't do the Black Friday stuff. It's insane and chaotic, and I don't feel like I really have the energy to stand in long lines, or get up at 3am for that matter! So I spent a good amount of time browsing for toys on Amazon, and ended up Christmas shopping for 4 of the kiddos I need to buy for! I was pretty happy! I had already bought my mom something earlier in the day, so I was excited that I knocked 5 people off my Christmas list in a day. Whooo hooo! I was getting a bit worried because by this time last year, I was almost done shopping for everyone. I hadn't even thought about what to get people until this week. Just not inspired, I guess. Hopefully it'll continue and I'll get the shopping done pretty soon!

Today, I'm going to finish getting ready for a Holiday Extravaganza that I'm doing with a bunch of women tomorrow. I need to go through all my jewelry and see exactly what I have, and to see if there is anything extra I can whip up. I'm excited about this show, and nervous, too. I hope I am able to sell many items! After tomorrow, I need to work on making jewelry for people who've already requested things. It's been nice to keep busy with it!

Wednesday, November 24, 2010

Living with PH means trying to avoid stress. Stress takes a major toll on our health and can make us sicker and keep the meds from working properly.

Tuesday, November 23, 2010

There are times when a PHer has a very good day, in which they sometimes try to do everything on their "To Do" list that they can't do when it's a bad PH day. This, unfortunately, often leads to a day or two of bad PH days afterward. Often this can be very discouraging.

I am one of those who usually overdoes it when I'm having a good day. I KNOW I should be taking it easier, and that I don't have to accomplish everything I need to do in one day, but I'm hard-headed and I just don't learn! So then I need to take at least a day to just do nothing because I went overboard the day before that. It's a vicious cycle that I just don't seem to break out of! lol

Monday, November 22, 2010

Some people with pulmonary hypertension may be able to continue working after being diagnosed. However, there are many who cannot keep up with the demands of the job they are in because it is too physically (and perhaps emotionally) draining.

There would have been no way I could continue working as a preschool teacher, yet I would have if my doctor had not told me to quit my job. When I look back at how I felt when I was working, I wonder how the heck I ever got through my days!! The sheer exhaustion I felt when coming home from work every day was terrible, and while I'm sad that I can't continue teaching in a classroom, I'm so thankful that I'm feeling so much better than I did back then because I'm no longer working.

Sunday, November 21, 2010

"But you don't look sick," is a very common phrase so many PHers hear, and sometimes it is very irritating. This is when The Spoon Theory comes in handy. The story can be read here.

Saturday, November 20, 2010

Exercise is an important part of maintaining health, but it can be very difficult for PHers to do. Many PHers are short of breath with minimal exertion. Each patient is different. There are some who attend pulmonary rehab, or have asked their doctor what type of exercise may be beneficial to them. Cardiovascular activities and ones focusing on muscle tone are important! PHers must not over-exert while exercising, and must give themselves enough recovery time to see if they can continue with more activity.

I have said so many times how much pulmonary rehab has really made a difference for me since I started it over 2 years ago. There are some days when I'm dragging trying to get through exercising, but there are some day when I really do feel great. It's an incredible feeling to be able to exercise when it's something I never did growing up. Not to mention, all the muscles I have, especially in my arms! Whoo hoo! LOL

Friday, November 19, 2010

Many people living with PH must watch their salt and sodium intake because of possible fluid retention. Fluid retention can make it hard for a PHer to breathe. The need for diuretics is very common for PHers to help them lose excess fluid. Watching salt intake, buying low salt or no salt foods, cooking fresh food and using lots of spices and herbs are some ways for a PHer to control salt consumption in their diet.

I think I am one of the lucky PHers who really don't have issues with salt and require the need for diuretics. This doesn't mean that I don't watch my sodium intake. I don't cook with salt 95% of the time, and I read labels and avoid products with alot of salt in them. And I like to cook fresh as much as I can. Let's face it, PHer or not, salt really isn't good for anyone out there!! And it really boggles my mind watching people, like my dad, pour salt all over their food. I actually find that much salt really disgusting!!

Thursday, November 18, 2010

Being diagnosed with pulmonary hypertension can be an emotional rollercoaster for most PHers. They go through denial and anger quite often before they can finally wrap their head around what they are dealing with now. Learning to cope with limitations can be extremely frustrating, but eventually most PHers learn to live with a new "normal."

Wednesday, November 17, 2010

All the meds for pulmonary hypertension have side effects. Some sides don't stick around long. Some do. Side effects include one or more of the following, depending on which med/meds are taken: headaches, nausea, swelling in the lower extremities, liver damage, vision changes, nasal congestion, jaw pain, dizziness, nose bleeds, difficulty sleeping, heartburn, flushing, diarrhea, bone pain, rashes, infections, throat irritation.

When I started Tracleer, I got headaches, but I was nauseous for almost 2 weeks before that went away. When the dose was increased the next month, I went through the same side effects for a couple weeks, and since then, it hasn't bothered me.

When I started Revatio, the headaches were really bad for a couple weeks. Excedrin seemed to help, but they were almost constant before they started dissapating. And then I increased the dose, and they came back. The one side effect I get most often from the Revatio, usually after my last dose of the night, is stuffiness in my nose. It happens usually half an hour after taking it, and clears up (sometimes) after maybe and hour. It sure is a pain in the butt!!

Tuesday, November 16, 2010

Today is PH Blogging Day!

A few years ago, a phriend wanted to do something for PH awareness month, but being that she could not physically go out and about and spread the word, she came to me with an idea to blog about PH. I thought it was a wonderful idea! So in my post today, I decided to share how I've felt growing up with this disease, before being treated, and even after.

I have said before that I was born with pulmonary hypertension and congenital heart disease. Neither were discovered and diagnosed until I was 9 months old. The doctors couldn't repair the 2 holes in my heart because it was too late to do so, so they told my parents I might not live until 1, or I might live 50. In 15 more years, I WILL hit that 50 year mark, and I hope to do so while still in pretty good shape.

Obviously, I remember nothing as a baby with PH. I only know my mom told me that I was a pretty good baby. I didn't cry much, probably because crying made me way too tired. I didn't gain pounds, I gained ounces. Breastfeeding was too exhausting for me. I slept alot. But, I survived all that and moved on into childhood.

I remember bits and pieces from being a small kid. I do remember going to gym class in school for the only time in my life when I was in Kindergarten. Although my mom had told the teacher that I was not allowed to participate in gym, the teacher had me walk down the street to another school's gym with my class, and then I had to sit on the stage watching my classmates play. Thankfully, that was only once, because when my mom found out, she was not happy. I never went to gym class again. What I did in the meantime, I don't remember until I was in middle school. That's when I would go down to the first grade classroom and help the teacher until I had to go back to my own class. It was then that I knew I wanted to teach.

I remember in 4th grade, during lunch, I would be allowed to pick a friend to stay with me in the classroom to eat since it was too hard for me to go down the stairs into the basement and back up. This only happened in 4th grade, and I'm not sure why. I had to huff and puff up and down those stairs, which seemed like a million every time, when I was in the older grades. My heart would always feel like it was going to explode on the way up the stairs. When the class had to stop going up because someone was getting yelled at, I was thankful for the small rest and the small chance I had to catch my breath so I could continue.

When we started computer classes, they were down in the basement. I remember after class, I'd get a "ride" back up to the classroom from my computer teacher. He would carry me on his back until we got to the door. I always appreciated that. I imagine I didn't weight that much to him, since I probably was the size of a stick. lol But still, those stairs...let's just say that they were not my friends.

Field trips. Wow, field trips weren't always fun for me. Sure, the bus trip there was fine since we were sitting. But when we got to our destination, sometimes the walking was just too much for me. I couldn't keep up with everyone. I felt so conscious about it, and I'd try so hard to stay with the group. Many times I was thankful for any breaks we had. I know for sure that field trips were sometimes very hard to deal with.

In my neighborhood, there were alot of kids when I was growing up. We often played together, and I tried my best to keep up as much as I could. Playing tag and hide and seek were often hard because of the running around, but I did it. I tried playing baseball, but that just didn't work. So many times I felt like an idiot for not being able to keep up with anyone. But the times when we played sit down games, or played with Barbies or whatever, those made me happy since we didn't have to MOVE anywhere. And we used to do things like make tents on the front porch with blankets and spend most of the day under there with games, and I remember being happy then!

I opted to go to the Catholic high school after graduating from 8th grade for 2 reasons. The first being that most of my friends from grade school were going there, and the second being that the public high school was just so huge and intimidating. You wanna talk about stairs?? There were 4 floors and I can't imagine trying to get to a class in 4 minutes. They had elevators, but are they always guaranteed to work? No way. So off to the Catholic high school I went. Even though the stairs weren't as many as what I had to deal with in the grade school building, it was walking the hallways that got to me. The times when I had to try to get from one end of the building to the other in 4 minutes were sometimes unbearable. And I always was the type who hated to be late for things. So I huffed and puffed my way through high school, and when I graduated, it was time for college!

College, a completely different change to my life, not only mentally but physically. Not only did I have to walk far to get to some classes, but I had to leave buildings to get to another one, and the elements weren't always on my side. Winter in Western NY isn't pleasant, and often brutally cold and windy. And being that the college was close to the gorge, the winds there were downright awful sometimes. It's a miracle that I was never lifted up into the air and carried off to Canada. Fighting those winds was horrendous on my lungs and my heart. When I would finally enter the building for a class, I would have to hide in the bathroom just so I could catch my breath for 5 minutes before I could get to my classroom. THANK GOD there was an elevator. I usually only had to go to the 2nd floor, but just trying to climb stairs after feeling like my heart would explode was frightening. I am thankful that many of the buildings where I had classes had elevators. It did help some, but many times, I was very tired getting to class. And when I was extremely tired, I had a hard time focusing on the lecture because I had lost so much oxygen I felt groggy. But despite it all, after 4 long years, I got my education degree and I could begin my teaching career!

I only subbed for a couple of months before getting a job at a daycare as a preschool teacher. While I loved being around the kids, it was exhausting and taxing on my body. I also got sick more often than I had ever been when I was younger, and that was alot. I definitely had to go back home after work and take a nap just so I could continue through the day, even though naps were not that uncommon to me. It just seemed like I needed them more.

Two months after working at the daycare, I was hired as a classroom teacher for Headstart, which is federal program for preschool-age children. I was so thrilled because I had my OWN classroom! Not only that, but the school where I was to work was only one block over from my house! Yay! Ironically, the building was the same one I had walked down to in Kindergarten to sit and watch my classmates take gym class all those many years before. Considering I had only been in that building once before (and I was 5), I did not realize that they had many staircases. And my classroom was on the 2nd floor. And there were no elevators. And I had to take the class down into the basement for breakfast. And lunch. Which meant, I was doing stairs minimally 3 times a day, but more than often it was many more times than that. But, I took them slowly most of the time, and stopped my class on the stairs often on the way back up, mainly to catch my breath. The first year of teaching went pretty well, although I'd go home pretty tired most of the time. My second year of teaching went ok, but I felt as though sometimes I wasn't performing my duties as a teacher as well as I would've liked since I was tired much of the time. I skipped out on some lessons I'd done the year before, and I didn't have much energy for things. But I still loved my job and tried the best I could!

My third year as a preschool teacher fell apart slowly. The school year started out ok, but I had several students who were a handful. One of them tried to choke me as I sat on the floor playing one day, and I had to put him into a basket hold and had my aide call the principal up. I can't put into words how tiring that episode made me feel, and I had such a hard time focusing the rest of the day because the sheer exhaustion left me in a daze. I remember another time when this same student ran away from me while we were outside waiting for the bus, and trying to catch up to him and bring him back made me almost pass out. I'm actually surprised I didn't. After he finally got on the bus and I went back into the building, I remember being near one of the railings to the staircase, and somehow I crashed my forehead on it and started bleeding. I think it happened because I was in such a daze after running after the child outside (where it was also cold). I also think I scared the crap out of the nurse because I looked so horrible when I went to her for a bandaid.

I spent my third year of teaching pretty sick, and not with just a cold. I had double pneumonia, then bronchitis, and it was when I was on my third respiratory illness that my doctor told me to quit my job. It was heartbreaking for both of us. She knew how much I loved teaching, and I knew how much I would miss being a teacher. But had she not told me to quit, I may not be here today, for I would've never thought at the age of 24 to retire.

During all this time as a teacher, I was also enjoying a social life filled with going out to dinner with friends often, but also going out to party. Most weekends, I was at a bar with my now ex-best friend. We did so many things together, usually. Shopping, bar hopping, hanging out, whatever, we had fun. But I remember one day in particular, I thought I was seriously going to need medical help. We went to the Peach Festival one September, and this particular year they had it at a different location that required us to walk up a pretty major hill. Honestly, I'm not sure how or why I made it up there. By the time we finally got to the top, I had to sit down immediately. I thought I was going to throw up. My heart felt like it wanted to pop out of my chest and run away, and my legs felt like they were on fire. My ex-friend left to find some water for me. I had to sit quite a long time before I felt like I could get up and we could walk around. But I felt like hell, and it put a damper on the day. By the way, I did walk down the hill. Down is waaaaaay better for me than up.

I had also gone back to college for my masters degree during my third year of teaching, and it was hard not knowing if I should continue once I had to quit my job. I was getting my masters in early childhood education, since I realized how much I wanted to continue working with small children. I opted to finish my degree, and although I can't use it in the way I want, I am glad that I got it. I was thankful that although I went to a college with a huge campus, I had classes in only a few buildings, and I only took 2 classes at a time. I was able to park in an area meant for handicapped parking, and it wasn't as horrible a time getting into the buildings, although I still did get rather tired.

The last couple of years before I was finally able to get treatment for my PH symptoms were very rough. I realized how much as a kid I was able to deal with the shortness of breath and fatigue alot better than as an adult. I think maybe it's because I grew up feeling like it was normal for me to be so tired. The older I got, the more aware I was that this just wasn't right, that something was really wrong, although I still felt it was MY normal. I didn't know anything else. There was one night that really made me realize how bad everything was, although I can't go into details about it. After that was when the elephant moved in, right onto my chest. I never had that elephant in all the years I dealt with PH. It was something new. I actually thought maybe it was asthma, and I was even given inhalers that didn't do diddly squat. Eventually I was referred to the Cleveland Clinic Foundation for transplant evaluation.

I found out before going to CCF that I would need to be able to do a 6 minute walk. I thought, what?? I wasn't sure I could even do that! So, I began using my sister's treadmill in the basement. I thought I was going to die. It was so hard to do, and the shortness of breath was awful. My legs felt like jelly every time I finished walking. I tried to go on the treadmill every day, or every other day at least. I was determined to be able to do that test! I eventually got up to 6 minutes on the treadmill, but it was agony. When the time came to go to CCF and do the test, I'll never forget how I felt. I kept telling myself to keep going, to ignore my heart racing so fast, to pretend my legs weren't roaring with pain, to try not to give in to the feeling of puking my guts out everywhere. They were the worst 6 minutes of my life, even though I've had to do that test every time since I've gone there, and I will have to do it every time I go back.

My first appt at CCF required many other tests, and led to 2 prescriptions for the time being: Coumadin, a blood thinner taken every day and requiring lots of bloodwork, and oxygen to be worn all the time. While I was so reluctant about the oxygen, eventually wearing it constantly made that elephant disappear. Several more visits later, I was prescribed Tracleer. Most of the meds need special authorization from insurance, and it can take several weeks before the patient gets the drug. While waiting to see if I was going to even get Tracleer, my parents and I had gone on a trip to visit my uncle and his family in Michigan. My PH symptoms were still very bad at that time, and I felt so depressed on that trip. I remember spending most of the time in the room I slept in, writing and listening to music. I wondered if I would ever feel ok, I wondered what my future held. Would this new pill even help me? Would I need a transplant soon? It was a very scary time for me.

Tracleer arrived in October, and on the 12th of that month in 2003, I took my first pill. I didn't notice anything for weeks, and still wondered if it was going to work at all. One day, when I went to vote during an election, and I walked back to the parking lot to get into my car, I realized that I wasn't very short of breath as usual. I broke out into tears. I went home, and realized I wasn't gasping for breath the minute I got into the door from my garage to the house. I cried even more. The changes in symptoms were subtle at first, and eventually they kept improving. I couldn't believe that life the way I had known it all those years - the constant fatigue, the shortness of breath, the limits on what I could do - was really not existing anymore. And it was WONDERFUL!! Tracleer worked well for me for quite awhile, and I could even exercise! I even danced at my sister's wedding 8 months after starting it! Eventually, though, I could tell it wasn't working quite as well as in the beginning, and I added Revatio on August 16th, 2007. The combination of Tracleer and Revatio have really worked for me. For a little over 2 years now, I've been able to go to pulmonary rehab twice a week, and I really believe that's helped to keep me pretty stable. My PH symptoms are still around, but they are not constant. I don't always get short of breath walking places, and I am able to do a bit more than I used to before meds. I am so thankful for all the meds out there to treat PH. I hope to not need another one for a long time, but if it comes down to it, I'll do what I can to keep fighting this disease!

Monday, November 15, 2010


I had a dream last night, or early this morning, about black lab puppies that were being offered up for adoption. When I got up and thought about it this morning, I realized this was actually a Part II dream, because I remember dreaming about the puppies before. The first dream, they were too little for me to take home if I wanted them. By the time I had this dream, the puppies were much bigger. And for some reason, they were no longer black. Actually, they kept going back and forth from being black labs to golden labs, depending on the scene. But in the dream, I kept trying to figure out whether I wanted one or both of them. My family kept telling me I couldn't have either, because how could I possibly take care of them? And that thought also kept going through my mind. I'd never be able to bring it outside all the time, especially in winter, and I could never take it for a walk because I just don't have that kind of stamina. I remember someone ended up with one of the puppies in my family, and I was trying to convince Mandy and her hubby to take the other one, mainly because the puppies were siblings who'd grown very close to each other. When I finally woke up, I had an overwhelming sense of sadness. I think it was because I knew I'd never be able to take care of a dog. It seems strange, I am more of a cat person anyway. But to know that the option of having a dog is off the table made me a little upset for a brief moment. Just another thing that I need to cross of my list because I have PH.

(What made this dream not hurt so much was opening up my bedroom door to find Mittens waiting for me. He's all I really need!:) )
Tyvaso, or treprostinol, is another inhaled treatment meant to relieve PH symptoms. It works by opening up the blood vessels in the lungs, which helps to increase activity in the patient. The difference between Tyvaso and Ventavis is that Tyvaso inhalations are not as long, and does not need to be done as many times a day. This does, however, depend on a patient's needs.

Sunday, November 14, 2010

Ventavis, or iloprost, was the first inhaled treatment for PH symptoms. It works by direct vasodilation of the blood vessels in the lungs. Using Ventavis has shown improvement in shortness of breath and an increase in activity. Ventavis treatments are done every 1.5-2 hours a day, from 6-9 times a day. The cost of Ventavis is around $60-70000 a year.

Saturday, November 13, 2010

Adcirca, or tadalafil, or Cialis, treats symptoms of pulmonary hypertension much in the same way as Revatio. It works by dilating the blood vessels in the lungs, allowing more blood to flow and increase physical activity in the patient. The major difference between Revatio and Adcirca is dosage. Revatio is 3 times a day, Adcirca is just once. Important to note, with both of these meds, nitrates must never be taken! It can cause an unsafe drop in blood pressure.

I forgot to mention yesterday with my post on Revatio that I've been taking it since the summer of 2007. I have found that the combination of Tracleer and Revatio have improved my ability to do physical activities, such as pulmonary rehab. I'm so thankful that right now, these 2 meds have allowed me to be a bit more active than I was many years ago!

Friday, November 12, 2010

Revatio, or sildenafil, or Viagra, is another pill to treat PH symptoms. It works by relaxing and widening the blood vessels in the lungs to allow the heart to pump more blood through the lungs. It helps to reduce blood pressure in the lungs and allow more physical activity. It is taken 3 times a day. It costs around $10000 a year.

Thursday, November 11, 2010

Letairis, or ambrisentan, is another oral med to treat symptoms of PH. It works much in the same way as Tracleer does, blocking endothelin to allow for reduced blood pressures in the blood vessels, and increased activity in the patient. Monthly blood tests are required to check for liver damage and pregnancy. It costs around $48,000 a year.

Wednesday, November 10, 2010

Tracleer, or bosentan, was the first oral med treatment approved for PH. It works by blocking the effects of endothelin, which causes blood vessels to narrow, and scarring and overgrowth of the muscle walls of the blood vessels of the lungs. Tracleer can reduce the blood pressure in the lungs and improve activity and wellbeing. It is taken twice a day. Liver tests must be done monthly since it can cause liver damage. Women must do pregnancy tests monthly since Tracleer can cause major birth defects. It costs around $50k a year.

I began taking Tracleer on Oct. 12, 2003. It changed my life. I didn't notice it working at first, but after a few months, subtle changes were appearing. I wasn't gasping for breath after walking long distances. It was truly life changing for me. I am so thankful for those people who came up with it as a treatment. I'm hoping those same people can also find a cure!

Tuesday, November 09, 2010

Remodulin, or treprostinil, works as a vasodilator to widen the narrowed blood vessels in the lungs, and inhibits platelets from clumping. Remodulin can be use by IV, subcutaneously (both use pumps), or by inhalation. Inhaled Remodulin is called Tyvaso. Remodulin can cost around the same amount as Flolan every year, depending on dosage needs of the patient.

Monday, November 08, 2010

Flolan, or epoprostenol, was the first FDA approved medicine to treat symptoms of PH. It is a continuous IV through a permanent catheter placed in one of the large veins of the heart. A pump is used to deliver the med into the system. Flolan works by dilating the blood vessels and helping the right side of the heart pump more blood through the lungs. The cost of Flolan is at least $100k per year, sometimes higher depending on patient dosing.

Perhaps The Coast Is Clear

Last Wednesday I was feeling more tired than usual, but last Thursday I felt as if I might be coming down with a cold. I went to rehab and ran errands, but then I went home. I spent this weekend in the house laying low, overdosing on Vitamin C and tea and soup, and just getting as much rest as I could. I do NOT want to get sick. I think I've avoided getting a cold, though. The only issue I keep having is a slight headache at the base of my neck. Nothing seems to help it, so I'm trying my best to ignore it. Seems to be working.

I did do some things around the house during the weekend, but what I was most happy with was working on jewelry. I made an illusion necklace set and a single illusion necklace on Friday night. Last night and today, I ended up making 12 bracelets and a few pairs of earrings. Friday night and tonight, I sold a few bracelets that I had in my Etsy store. Overall, a pretty good weekend jewelry-wise!

I plan on breaking out of the house tomorrow to get to the post office (gotta mail off those purchases!), and maybe a couple other stores. I'm still not going to push myself, so if I don't feel like doing too much, I won't. I do think I need some fresh air, though, and at least it won't be as cold as it was this weekend. So now it's off to bed so I'll have energy for my Monday!

Sunday, November 07, 2010

In 1975, when I was diagnosed with pulmonary hypertension, there weren't any treatments available. Twenty years later in 1995, the first FDA-approved treatment became available in the form of a continuous IV med called Flolan. It is still considered the gold standard of treatment for PH, especially for patients who are very ill. Today, there are now 8 FDA-approved treatments for the symptoms of PH. There is still no cure.

Saturday, November 06, 2010

Although pulmonary hypertension is a lung disease which effects the heart, there are many pulmonologists (doctors who specialize in lung conditions) and cardiologists (doctors who specialize in heart conditions) who do not understand PH at all. Therefore, PH patients need to see a PH specialist, a pulmonologist or cardiologist whose main or only focus in their practice is treating PH patients.

A reader asked me what my first indication of having PH was, or did my doctors find it. Well, a doctor did realize something was going on with my heart when my mom brought me for my first set of shots at a free clinic when I was a baby. The doctor told my mom to talk to my pediatrician, but that doctor didn't think anything was wrong. So, when my mom brought me for my second set of shots at the same free clinic, the same doctor told her there was something very wrong, and that I looked cyanotic (blue). My mom once again told my pediatrician, and I was scheduled to see a pediatric cardiologist at Buffalo Children's Hospital. When my parents showed up with me, there was a waiting room full of other parents and their children, but I was taken immediately before all of them because of how I looked. They did tests, including an echo and EKG. At some point they did a right heart catherization. I know they did a lung biopsy. And at 9 months old, I was diagnosed with pulmonary hypertension due to congenital heart disease. I have atrioventricular canal, with means basically that I have 2 holes in my heart. I was diagnosed in 1975.

Friday, November 05, 2010

Pulmonary hypertension may be suspected by an echo, but the ONLY test used to actually diagnose PH is a right heart catherization. Other tests performed to help determine whether PH is the only thing wrong, or if the person has underlying causes for PH are blood test, chest xray, pulmonary function tests (PFTs), 6 minute walk, nuclear scan, and electrocardiogram.

Thursday, November 04, 2010

Another Year of Exercise

This morning I reluctantly got out of bed to get ready to go to rehab and then do some errands. I think I'm coming down with something, so I really debated for quite awhile whether to even go outside. But, I did, and I left a little bit early so that when I got to the hospital, I could see the Financial Advisor about getting help to pay for rehab for another year. Despite how I'm feeling, I'm glad that I went. She was readily available, she remembered me from last year, and she set it up and printed out a copy for myself. She told me next year when I start thinking about turkeys, to come see her again. lol I'm glad that is taken care of. I don't know what I'd do if I had to stop rehab because I can't afford it anymore on my own. I really do think it's helping me so much!
Major types of PH include: IPAH (Idiopathic Pulmonary Arterial Hypertension) - cause is unknown; FPAH (Familial PAH) - the cause is due to genes; APAH (Associated PAH) - the cause is due to another disease or chronic condition, including connective tissue disease, congenital heart disease, chronic liver disease, HIV, drugs, toxins, and more.

Wednesday, November 03, 2010

You cannot get pulmonary hypertension from smoking. You cannot get it from being overweight. You cannot get it from being lazy and not exercising. Any doctor who tells you this is full of crap and doesn't know a thing about this disease.

Tuesday, November 02, 2010

Pulmonary hypertension is not regular high blood pressure. It is high blood pressure in the arteries of the lungs that can lead to heart failure.

Monday, November 01, 2010

To Make Aware

November marks PH Awareness month! If I asked 5 people if they knew what pulmonary hypertension was, I would actually be shocked if ONE person knew. This disease really needs more awareness! If you or someone you know are experiencing shortness of breath from doing the smallest task or just walking down a hall, are having fainting spells or dizziness that cannot be explained, or are extremely fatigued all the time, please get to a doctor! Pulmonary hypertension may not be the cause, but it's better to be safe than sorry in getting it checked out as soon as possible!