Showing posts from November, 2008

PH Awareness Month - Post #30

It's the last day of November, the last day of PH Awareness month. I honestly can't believe I actually kept up with writing something PH related for every day of November!! I've touched upon what PH is, how it is diagnosed, who to see for treatment, what the available treatments are, and various ways of dealing with living with pulmonary hypertension. And just because awareness month has ended does not mean I will wait until next year to start talking about PH with people who don't know much about it again. I am always trying to make others aware of this disease. Wearing oxygen helps quite a bit, since I do get looks and occasionally questions about why I am wearing it. I pass out the green PH cards from the PHA, explain what PH is, and tell them to browse the website to discover what this disease is all about. This Thursday, I am planning on bringing PH posters to my PCP's office to ask if she would post them in some of the rooms, and perhaps even in the waiting r…

PH Awareness Month - Post #29

This PH awareness post goes out to the many PHers who are sadly lost every year to this dreaded disease. For various reasons, they pass away from complications to this disease, or from complications caused by the underlying reason to their PH (if they had one). These phriends are sadly missed, and even if we may not have really got to know one of them, it's still heartbreaking to know that another one is lost to this disease. It makes wanting a cure so much more urgent, so much more NEEDED. The phriends I have lost this year include:

*SusanT (I am reminded of her beautifully kind spirit every time I get into my car because I have a starburst hanging from my rearview mirror that she sewed into a birthday card she gave me the year before. I think I miss her the most)

*Shelly (a Myspace phriend with a really wonderful personality, who used to send me uplifting messages at moments when I seemed to need them the most)

*Stella (who sadly may have passed from cancer and not PH, but still ve…

Getting Ready For Christmas

The day after Thanksgiving, I usually try to put up my Christmas tree and decorations. Well, this year was no different! Around noon, I finally got my act together and went down in the basement to see what needed to be brought up. Somehow my usual 2 boxes of decorations was put into 3 boxes, so those needed to come up first. I brought up one at a time, sitting down after each one to suck back the o2 and let my heart calm down. I heard Diane letting Frasier out at one point, and when I went back down to start bringing up tree branches, Diane was down there. She saw what I was doing, dropped clothes she had gone down there for on the floor, and started helping me. I was going to object, but I sooooo appreciated it!! After we brought up the branches, I sat down to rest a bit before I figured out which branches went where. You would think I'd have it written down after several years of having this tree, and getting confused!! But, I finally got a sheet of paper, and wrote all the col…

PH Awareness Month - Post #28

There is an incredible number of companies who are interested in helping those with pulmonary hypertension. These companies are willing to help sponsor events, from small support group meetings, to large conference gatherings (such as the PHA conference held every two years). The list of companies include the following:

Accredo Therapeutics - provides all FDA-approved treatments for PH, as well as nursing and pharmacy services to PH patients
Actelion - developer of Tracleer (bosentan), and also Ventavis (iloprost)
Caremark - offers support in nursing, pharmacy, and distribution of Remodulin and Tracleer
Curascript Therapeutics - provides Remodulin and Ventavis
Encysive Pharmaceuticals - developers of Thelin (sitaxsentan), which is still in Phase III clinical trials
Gilead Sciences - maker of Letairis (ambrisentan), and also distributes Flolan
GlaxoSmithKline - maker of Flolan
Lung RX - a part of United Therapeutics which focuses on sevaral pharmaceutical products
Pfizer - maker of Revatio (sil…

PH Awareness Month - Post #27

It is Thanksgiving today, and I thought I would post some of the things I am thankful for while living with pulmonary hypertension. I hope everyone reading has a wonderful Thanksgiving, and for those of you not celebrating this holiday, I just hope you have some things to be thankful for.

*I am thankful for God allowing me to wake up in the morning to a brand new day. For it is one more day that doctors weren't sure I'd have many years ago.

*I am thankful for my loving cat who greets me every morning as I come out of the bedroom after waking up. I have had him since dealing with increased symptoms of PH, and he makes me happy when I am feeling crappy or down.

*I am thankful for being able to take care of my personal needs without getting so short of breath, like showering and dressing. It means the medicines must be working, at least for now.

*I am so thankful for the roof over my head, and the food I can get, even if I am getting help from the government to survive on my own. Bei…

In Stock!

I got up today, took a shower, and took quite some time to eat breakfast. Afterward, I cleaned the fish! And I'm sure they are all happy now!! After that, I worked on my Etsy store again. Geesh, I had a lot expire, and a lot to add. But now, I am all stocked up! I know I still want to make several more items, but at least I have over 85 things to choose from. That helps! If you'd like to see my items for sale (or just to see what the heck I make), please go here! I also have an icon to click on in the right side, if you scroll down a bit. You can see some jewelry items, and that will lead you to my store!

PH Awareness Month - Post #26

Many PH patients are told by their specialists that they should go on a low or no sodium diet. Why is this? Salt regulates the balance of fluids in the body. A high increase of salt in the diet can cause water retention. Water retention can cause an increase in PH symptoms, especially shortness of breath. So, a decrease of salt in the diet would help with water retention. Every PH patient is different. For one PH patient, getting rid of salt in the diet completely is needed, whereas another might need to limit it less.

Cutting back on sodium seems like it is so hard! Salt is in almost everything, so how does one do it?? Here are 5 tips found here on the PHA website on how to cut or limit salt in foods we eat:

1. Throw out your salt shaker. Do not use it in food preparation or at the table.

2. Check the serving size on processed foods when adding up your sodium intake. Purchase products with no more than 200 mg per serving.

3. Eat lots of fresh fruit and vegetables.

4. Watch out for sodium …

Back to Rehab

I went back to pulmonary rehab today. I hadn't gone in a couple weeks because I was sick. Last week was also so cold, and I have decided that if it's below 30 on days I have to exercise, I'm not going. It's just too cold for my lungs, and I'm not risking it! Anyway, I felt pretty good working out. I still did 10 minutes on everything like I had been, but I didn't use much of an incline on the treadmill, and I had no resistance on the stationary bike or the arm cycle. I think it went well! I didn't feel too tired after I got out. Right before I got sick, every time I got out of rehab, I felt like I was completely dragging the rest of the day. So I guess I really must be feeling better!

I hosted chat today, which was a little slow at first, but then several regulars came in for a bit. Around 3, I left so I could work on restocking my jewelry site. I didn't pay attention too much to what I sold at the jewelry party, so I had to go through everything to figu…

PH Awareness Month - Post #25

I came across this fact sheet on what to do when you, your child, or someone you know and love are diagnosed with PH. It's a great sheet, and can be printed out if you go here. I'm just going to list the things they suggest! I wish they had this list when I was diagnosed in 1975, but really, no one hardly knew anything about PH as compared to today!

1. Obtain and maintain copies of all of your medical records in a binder.

2. Seek an evaluation at a Pulmonary Hypertension (PH) Center.

3. Read PHA’s 280-page book, Pulmonary Hypertension: A Patient’s Survival Guide.

4. Make a list of all of your medications.

5. Ask your doctor if a handicapped parking permit would help you.

6. Make a written list of all your questions and take notes when the doctors and nurses answer them.

7. Educate yourself about your health insurance plan.

8. Keep a written list of all of your doctors and their contact information.

9. Evaluate your financial situation.

10. Get education and support.

**Just a personal no…

PH Awareness Month - Post #24

I have seen time and time again on the PH boards questions about needing surgeries not related to PH, and whether or not we can be under anesthesia. The PHA has a great response to this question, and while you can read it here, I thought I would post it, too. I honestly forget all the time which anesthetic is ok and which is not! It's important for PHers to know, because it can literally mean life and death!

Question: What issues should PH patients consider before undergoing general surgery, specifically relating to general anesthesia?

Answer: Anesthesia and general surgery in patients with pulmonary arterial hypertension (PAH) are associated with increased risk of morbid events and death due mainly to right heart failure, abnormal heart rhythms, and postoperative low oxygen levels. Successful management of patients with PAH undergoing general surgery requires a multidisciplinary approach involving the pulmonary hypertension specialist, an anesthesiologist well-versed in the managem…


Last night was the jewelry party Mandy and I had been planning for for weeks. I really wasn't sure how it was going to go, and neither was she. But, I think it went well! We had quite a few people who showed up. We had a ton of goodies to eat! We had made a chocolate fondue, and a cheese fondue. In original 1970's fondue pots!! We had a wide variety of things to dip: carrots, celery, cauliflower, strawberries, apples, pound cake, brownies, marshmallows, tortilla chips, breads, and pita chips. Joanie made this fabulous crab thing, it was very yummy, too!! We had spiked punch, and non-spiked punch! And, several wines. We also had many leftovers!

When I went downstairs after I got to Mandy's house a couple hours before the party, I saw all of her stuff on a couple tables. I was overwhelmed by how much she had made. I also couldn't believe how gorgeous everything was!! She had glass pendants of all various shapes, sizes, and colors. She had glass magnet sets. She made reall…

PH Awareness Month - Post #23

Once a PH patient has been diagnosed, and started on meds, pulmonary rehab MIGHT be suggested, either by the PH specialist, or the PH patient (who knows enough to bring it up). Exercising is essential to keep a person's strength up, and for a PHer, this is important. The great benefit of a pulmonary rehab program is that it helps a PHer SLOWLY build up stamina. There is an emphasis on slow!

I started PR in September, and I was nervous about it at first. When I walk on my treadmill at home (which is so sporadic lately, and not good!), I usually tire out easily. But then some days I do so well. My biggest problem has been consistency. It isn't good to exercise for quite a while and then just stop. The body gets de-conditioned that way, and if exercising is started up again, it's like starting all over. Pulmonary rehab has at least made me go somewhere to exercise 2 times a week, and sometimes I walk an extra day at home. Here is what I do at PR:

*I get my portable oxygen set u…

PH Awareness Month - Post #22

In regards to yesterday's post about emergency preparedness, I thought I would expand a little about informing medical response teams about PH and your own personal situation. It is vital that this be done, because it really could mean the difference between life and death! Here are the main tips I found on the PHA website (if you click here, you can read the whole article, and even print it for reference!):

*If you’re not comfortable doing your own training, contact your specialty pharmacy to organize and conduct the training for you.

*Ask your EMT to put you on the BOLO, or “Be on the Lookout” list, which is a list of people who should be the first to receive attention, a check-in, electricity, or specific needs, in the event of a blackout, inclement weather, or disaster.

*Ask your EMT to tag your number in their system so that if you ever call 911, they’ll be automatically alerted that you have special needs.

*Introduce yourself to the staff of your local fire department.

*Get on a …

PH Awareness Month - Post #21

In the event of an emergency, PH patients really should be prepared with a variety of things needed to insure their safety and well-being. I was reading the Emergency 101 Tips on the PHA website (which can be found here), and I just thought I would re-write the Readiness Checklist. I admit that, while I am ready with most of the information included in this checklist, I don't have everything. I need to do that!!

*I wear a Medic Alert identifier to convey critical health information. I’ve included “Pulmonary Arterial Hypertension,” and such applicable information as “Do Not Stop Pump,” “On Sildenafil -No Nitrates” and/or “Takes Coumadin”

*I always carry a cell phone and/or let people know where I am going if I am traveling alone. I have signed up for a roadside assistance program.

*I maintain a current list of all of my medications. I’ve included concentrations, doses and rates for infusion and/or oxygen therapy.

*I have a three day supply of all my medications and supplies. I keep it …

PH Awareness Month - Post #20

I thought today I would type my good PH deed for the day! There have been workers on my street for the past almost 2 weeks now, working on the gas line. This morning I noticed that they had dug a huge hole in the front of my yard! Technically, it is the city's land after the sidewalk, but still, I wasn't pleased! So they were doing something, and around 1pm-ish, I heard the doorbell ring, and banging. I go to answer it, and no one was there, but there was a worker across the street telling me to hang on a minute. He came over, said the gas accidentally got turned off, and could he see if mine was ok? Sure, I said. He went down to the basement, did something, came back up the stairs mumbling about how it was off, and they'd get it back on again. Soon. He hoped. And walked out the door. Well alrighty, greeeeeaaaaat.

My mom picked me up about 40 minutes later, and after going to the post office, we came back around my house, and stopped to ask a few workers when the gas would…

PH Awareness Month - Post #19

Living daily life with PH means many of us PHers need to take precautions or change the way we do things, or even skip doing things altogether. The PHA has great tips on their website for dealing with various daily activities and other things, and I thought I would go through a few of them in the next several days. Being that the weather has been getting colder in most areas, and that people have already started getting sick, I'd address that issue first! The following are a few tips about dealing with the cold season. The original article can be found here.

Cold & Flu Season Tips:
*Always get a flu shot!
*Never use antibiotics for a cold or flu. They don't work!
*Never share or use leftover antibiotics.
*Stay healthy! Use disinfectant cleaner on hard surfaces every day.
*Don't forget to wash your hands often. Use an antibacterial lotion if washing your hands is not available.

Here are a few of my own tips for dealing with a cold or flu:
*Get plenty of rest! This may seem like…

PH Awareness Month (Blogging Day!) - Post #18

My PH story begins when I was born in September 1975. I had a collapsed left lung, and I was taken away before my mom could even hold me. In fact, my mom didn't get to hold me for 3 days because she was dealing with an infection of some sort. Eventually, my parents got to take me home, and all seemed fine. I wasn't gaining much weight from feedings, and because of that, I didn't get my first set of shots at the time they were usually given. My mom took me to the free clinic for them, and one of the doctors there thought they heard something with my heart. He suggested that my mom talk to my pediatrician about it. She did, and my pediatrician heard nothing, so nothing was done. When my mom brought me for my second set of shots, at the same clinic, the doctor again said he heard something going on with my heart, and thought something was very wrong. I looked bluish around the lips, and he was very concerned. So, my parents again brought me to the pediatrician, who finally re…

Busy Busy!

The jewelry party Mandy and I are having is this Saturday, and I'm still trying to make stuff for it. I made one more necklace today, then I decided to work on earrings. I went to a website I like for beads, and they also have jewelry ideas. I was trying to find different ways to make earrings. After I gathered a couple in my mind (and shockingly didn't lose them!), I worked for an hour and a half before taking a lunch break. After lunch, I worked a couple more hours. I've got 15 pairs of earrings, to add with all the other pairs I've had already for awhile! I think that might be enough for now. The only other thing I want to work on is lanyards. I'm only going to make a couple of them, to let people know I make them. Hopefully it'll be easy enough. I'm going to try a different style so that the person wearing the lanyard can take it apart so that it doubles as a necklace to wear outside of school or work. A two-for-one product sounds sellable (is that a wo…

PH Awareness Month - Post #17

I'd like to talk more about support groups. While I felt like I had found gold at the end of the rainbow when I first got the PHA website many years ago, since I had never talked to anyone living with PH like I had all my life, starting an actual support group in my area made me feel like I had hit the Lottery. I admit that I was very nervous about starting the group at first. I used to teach preschool, and I could talk to those kids very easily! But talking in front of adults??? NO WAY!!! But a couple weeks after I was asked about starting a group, I finally decided to go for it! It was a new purpose in my life, something I could do to help others living with this drasted disease.

My first meeting was in October 2005. I had a handful of people, but I kept reminding myself that a support group was a meeting of 2 or more people. I made the meeting a general one, explained my life story with PH, and why I wanted to start the group. Everyone shared, everyone had questions for each oth…

PH Awareness Month - Post #16

Many people are diagnosed with PH, and if they have access to a computer, they will look up PH on a search engine, and become horrified at what they read. There is soooooo much outdated information on the world wide web, and unfortunately, once something is out there, it's out there for good. There are, however, 2 great sites for information on PH. One is PH Central. This website contains information about PH, resources, ability to chat with others, PH Diaries written by actual PH patients, and much more. Another website that is great for people just learning they have PH is the Pulmonary Hypertension Association. This site also includes facts about PH, recent PH news from all over the world, message boards and chat rooms available 24/7, and lists of support groups around the country. Both websites are updated with the latest PH facts and news on a regular basis, unlike many other sites found out in www-dot land that won't ever update facts. I am sure these two sites offer rel…

PH Awareness Month - Post #15

This post is about phriends, and it comes at a time that is most desparately poignant for me. What are phriends, you ask? Phriends are friends who have PH. Phriends are the ones I have become close with over the past several years while posting messages and going to chat rooms on the Pulmonary Hypertension Association website. Phriends are the people who completely get me and how I am feeling, and I can totally understand what they are going through as well. Phriends come from all over the world. While many of my phriends live in the U.S., I have also met phriends from the U.K., Germany, Canada, Mexico, and Australia. My phriends understand when I say that I'm a little sob means that I'm out of breath, and not that I'm a son of a bitch! My phriends get it when I say I got really tired because I cleaned a room or put away laundry, or went to a few stores on a chilly day. Phriends are there to comfort each other, to wish each other well if we are sick, to pray or have good t…

Jewelry Samples!

Here are some of the necklaces I made with Mandy's pendants, for those of you reading who wanted to see! I made a total of 16 necklaces, and all the pendants are so different! Mandy is really doing a great job! I am going to put any of the pendant necklaces we don't sell at the jewelry party on my website. Now I must go back to work and make some of my own jewelry!!

PH Awareness Month - Post #14

Q. What happens if all the PH treatments available are not working for an individual? What happens then?

A. If a PH patient's PH specialist has tried every appropriate treatment, and those treatments are not working to full capacity to make the PHers life better, a lung transplant may be one of the last resorts a PH specialist will suggest for treatment. A lung transplant (in some cases single lung, in some cases double) is the only cure for PH. However, having a lung transplant is like trading one disease for another. Living life after a transplant can have many risks. But when a transplant is the only option left, many patients do decide to get one. In the last several years, with the number of other treatments available for PH patients to take, the need for transplant has dropped considerably.

I Got Drugs!

I called my PCP's office this morning when I got up. My throat was still bugging me, although not as bad, but I figured I'd still call anyway because I also had a very swollen right gland. I left a message, and they called me back about 20 minutes later, and scheduled an appt with the nurse practitioner at 3:30pm.

I got to the office a few minutes early, checked in, went to find a seat, and saw this guy who was very familiar to me. He glanced up and saw me, and he broke out into a huge grin. It was Ricky, a friend of my dad's who, funnily enough, I saw at this same office a few years ago! LOL! He got up and gave me a big hug, and we went to sit down. He asked me how I was doing, I said well besides sick, I was good. He asked how my dad was, and I said he was good, and then the nurse called Ricky's name. Darn it!! I wanted to talk to him more!! I always liked Ricky, he is such a nice guy. And I know he's an older man, but he's also easy on the eyes. Not that I w…

PH Awareness Month - Post #13

Q. What is Letairis?

A. Letairis (ambrisentan) is an oral medication that was FDA-approved in 2007. Letairis blocks endothelin, which constricts the blood vessels in the lungs. Letairis works to reduce the blood pressure in the lungs, improving activity level in PH patients.

For more information on Letairis, go here.

Still Sick

There's not much to really report about here. I'm still sick with this stupid head cold. My throat is still kinda sore, no matter how much gargling I've done, or how much honey and lemon I've been eating. The Tylenol helps, but I'm trying not to take it too much. If my throat is still really bothering me in the morning, I'll call my PCP to see if she wants me on anything. All day I've been blowing my nose, which I guess is ok, but not when it's every 5 minutes!!! And my poor hands are so dry from washing them or using antibacterial stuff every time I blow my nose. I just really hope this miserable cold ends soon!! I haven't had a cold in a long long time, this sucks!!!

The only good thing is that I've had to stay home, and I've been working on jewelry. I made 3 necklaces yesterday, and 5 today. I have made necklaces with all of Mandy's pendants (I think I made 15 of them)! I really have to admit that they came out so pretty. Now I need to…

PH Awareness Month - Post #12

Q. What is Revatio?

A. Revatio (sildenafil) is an oral medication, taken 3 times daily. It was FDA-approved in 2005. Revatio works by relaxing and widening the blood vessels in the lungs so that it is easier for the heart to pump blood through the lungs. Revatio can help improve exercise capacity and well being. Revatio is also known as Viagra, the erectile dysfunction drug. However, Viagra is not FDA-approved for pulmonary hypertension. Revatio is.

For more information on Revatio, go here.

PH Awareness Month - Post #11

Q. What is Ventavis?

A. Ventavis (iloprost) is the first inhaled treatment for PH. It was FDA-approved in 1994. Ventavis directly helps open the narrowed blood vessels in the lungs. PH patients on Ventavis have shown an increase in exercise ability and less shortness of breath. Ventavis is inhaled at least 6 times a day, and time taken for each inhalation is 6-10 minutes, depending on the patient.

For more information on Ventavis, click here.

PH Awareness Month - Post #10

Q. What is Tracleer?

A. Tracleer (bosentan) is the first oral medication in the treatment of PH. Tracleer was FDA-approved in 2001. Tracleer works to block the effects of endothelin, a substance found in excess in a PH patient. Endothelin causes the blood vessels to constrict. Using Tracleer helps to relax the blood vessels, reducing blood pressure in the lungs, and increasing functionality in the PH patient. Tracleer is taken twice daily, and monthly bloodwork must be done in order to make sure liver function is not being affected.

To find out more information on Tracleer, go here.

I'm Sick, Darn It!

Well unfortunately my body finally took the bait and went towards the germs I've been feeling back and forth for the past month or so. Yesterday afternoon, I started feeling a sore throat. Despite valiant efforts to get rid of it through honey and lemon, tea, soup, more tea, Tylenol, acidophilus, more honey and lemon (etc., etc.), it didn't disappear, and I am now post-nasaly drippy as well. I am so aggravated by this!! This morning I doped myself up with more Tylenol, got ready for church since I had my nephew's baptism after mass, and got myself out the door. The baptism was nice, and I am glad and honored to be his godmother. :) Afterward, we went to Mandy's for some soup and sandwiches. Mandy is just such a great cook! She made 3 soups: chicken tortilla (which I miss, since she used to make it often when living upstairs from me!), loaded baked potato, and mushroom. Everyone thoroughly enjoyed the meal, and the yummy bread pudding Mandy made for it afterward! I fin…

PH Awareness Month - Post #9

Q. What is Remodulin?

A. Remodulin (treprostinil) is another IV or subcutaneous (under the skin) delivered medication in the treatment of pulmonary hypertension. Remodulin was FDA-approved in 2002. Remodulin is a vasodilator, and helps widen the blood vessels of the lungs and other parts of the body. Remodulin has been shown to improve exercise capacity only a few months after a PHer is on it.

Remodulin's half-life is much longer than Flolan's. Instead of disappearing minutes after being delivered into the body (like Flolan), it can last up to 4 hours. As with Flolan, precautions need to be taken to keep the environment sterile when preparing for dressing changes. The biggest issue many Remodulin users deal with is site pain, which usually lessens the longer it is used.

For more info on Remodulin, please go to here.


I must have been rather tired when I posted my clarification last night. I forgot to mention that my parents are actually going down to Lisa's, barring any weird happenings with the weather. So, Joanie and I were texting last night about having Thanksgiving together. I suggested microwave meals. She said we could do something different. So I suggested Chinese food! She said sure, provided they'd be open on Turkey day. To be quite honest, I am not going to miss all the turkey day preparations. Save for one pecan pie. Joan told me to make a tart. LOL! I should, because I sure as heck can't eat a pecan pie myself! WAIT, scratch that. I SURE COULD eat a pecan pie by myself, but I SHOULD NOT! LOL!

It'll be an interesting Thanksgiving. I had one turkey day about 8 years ago by myself. I was very sick, and my parents went to my Grandma's for that weekend. I had a boyfriend at the time, but he didn't end up coming over (one of the reasons he's an ex!!).…

PH Awareness Month - Post #8

Q. What is Flolan?

A. Flolan (epoprostenol) was the first FDA-approved treatment for pulmonary hypertension in 1996. Flolan is known as the "Gold standard" treatment for PH. It is a continuous IV medication, and works by dilating the blood vessels to allow more blood flow. It also helps the right side of the heart to pump blood through the lungs.

Flolan is continuous because the effects of the medication lasts only minutes at a time. It is delivered into the bloodstream by a pump and IV catheter in the chest. The major concern with Flolan is infections at the IV site in the chest, and every precaution must be taken to keep the enviroment sterile when changing the dressings, and mixing the medicine. However, Flolan has been proven to save the lives of PHers who were extremely ill.

For more information on Flolan, please go here.

A Clarification

I posted several days ago about my parents possibly going down to see Lisa for Thanksgiving. Apparently, I gave off the impression that I was mad at my mom about not asking me to go. That was soooooooooooooo not what I meant. I read my post on it again, and maybe what I wrote could have been misread, but I must clarify that I was NOT mad at my parents. What I WAS irritated at was the fact that it is so not easy for me to just say "Yes I'll go." It's hard to plan on how I'll be feeling to make that long of a trip, when lately I feel ok one day and like shit the next. I'm not only dealing with the PH, I am also dealing with not being able to sit for very long. It's been going on forever, I have talked to my doctor about it, and I will discuss it with her again in December. I just can't even imagine driving for 14 hours when I can't even sit for a couple hours without being in pain. ANYHOO.......I did not mean for my earlier post to sound like I was …

PH Awareness Month - Post #7

Q. What are calcium channel blockers?

A. Calcium channel blockers (CCBs) are oral meds that relax the muscles around blood vessels, allowing better blood flow through the vessels. CCBs also can regulate the heart rate. CCBs have been used for years for PH patients, although, they do not work for every PH patient. Some PHers do not even respond to CCBs.

CCBs are grouped into conventional medical therapies in the treatment of PAH. Other meds included in this group are:

*Digoxin - A drug taken once a day that helps with the pumping function of the heart. It may also help to regulate irregular heart beats.

*Coumadin (Warfarin) - A drug taken once a day that helps to thin the blood in order to prevent clots. Coumadin must be monitored by blood draws to maintain the correct amount of the medicine in the bloodstream.

*Diuretics - A drug that helps with fluid retention, and also helps to treat heart failure. Diuretics can be taken one or two times daily, and bloodwork is often used to make sure th…

PH Awareness Month - Post #6

Q: How is PH treated?

A. There are several FDA-approved medicines for the treatment of PH. I am going to list them in this post, and in the next several days, I will give a description of each of them.

*calcium channel blockers
*Flolan (Epoprostenol)
*Remodulin (Treprostinil)
*Tracleer (Bosentan)
*Ventavis (Iloprost)
*Revatio (Sildenafil Nitrate)
*Letairis (Ambrisentan)

Are You Kidding Me??

Today I decided to make my monthly trip to Walmart, for my monthly crap that I need to buy. I had my list, because nowadays just remembering anything in my head is laughable. I got some vitamins, browsed the dental aisle, picked out cottonballs and some Calgon spray (that I put back later), and was heading toward the bead section (oh my gosh, beads????), when I stopped near the toy aisle with an appalled look on my face. I wasn't shocked at any of the toys. No, I had suddenly decided to listen to the music the store was playing.

It....was....a......CHRISTMAS TUNE.


I mean, I know there are Christmas decorations and that kind of stuff out, they've been out for weeks. But that kind of stuff you can just walk on by and not pay any attention until you really want to. However, the music is something you can't really escape!! I mean, seriously?? I walked by an employee humming to one of the tunes, and I just had to laugh at myself! I almost stopped…

PH Awareness Month - Post #5

Q. Who treats pulmonary hypertension?

A. A pulmonary hypertension specialist should be treating PH. A PH specialist is a pulmonologist, or a cardiologist, who specifically focuses on the treatment of PH patients. Usually, they have seen many PH patients, not just a handful, and they know and understand what medications might be right for the patient. To find a PH specialist in your area, or one that might be close to you (many PH patients need to travel a distance for a PH specialist), go to

A Change For America!!

Our 44th President of this great country will be Senator Barack Obama. This campaign has been the longest I've ever remembered, and John McCain and Barack Obama fought hard to get a win. I can only hope that our first black President will bring the change he has promised all along in his campaign, because Lord knows, we sure need it!!!!

PH Awareness Month - Post #4

Q. What tests are used to decipher whether or not a person has PH?

A. Many times, an echocardiogram is done on a person, and possible PH is detected in that test by measuring the pulmonary artery pressure. Actually, in an echo, the pap is estimated. Echos can be way off. For this reason, if an echo reading is on the high side, then a right heart catheterization (RHC) should be done. An RHC can tell the exact pressures in the heart. Other tests that doctors usually have a patient go through can include: a 6 minute walk (6mw), pulmonary function tests, chest x-rays, VQ scans, arterial blood gas (ABG), CT scan, and MRI.

PH Awareness Month - Post #3

Q: How does someone get PH?

A: There are reasons why someone could have PH. Idiopathic pulmonary arterial hypertension (IPAH) means that there is no known reason for the PH diagnosis. IPAH is rare, occurring in only 2 in one million persons per year.

Secondary PH means that there is an underlying cause for the PH diagnosis. Congenital heart diseases, pulmonary thromboembolism, inflammatory diseases (such as scleroderma, CREST syndrome, or systemic lupus), HIV infections, liver disease, and diet drugs (such as fen-fen) are several reasons for a secondary PH diagnosis. SOMETIMES, but not all the time, the treated underlying condition MAY cure the PH. However, this does not always happen. Managing PH and the cause for it has made living with PH for much longer a bigger possibility nowadays!

PH Awareness Month - Post #2

Q: Who can get Pulmonary Hypertension?

A: Anyone.

PH does not discriminate. Men and women of all ages and race can have PH. It does occur more in women of child-bearing ages, but it doesn't limit itself to just that group. Children can be born with PH, teenagers can have it, middle-aged folks can get it, and even older people. It is a disease that does not limit itself to one group of people.

Halloween Happenings

My Halloween was nice. I didn't do too much during the day, besides mail out a card and a necklace set that I sold to a phriend (thanks Marcia!). I tried to take a little nap before passing out candy, but that wasn't too successful. So around 4ish, I got ready to go down to my parents' house to pass out the candy!

After I got to my parents' house, I decided to walk down the street (practically back to my house!) to take pictures of the house that puts up life-sized statues of witches and goblins and ghouls, so very cool! Sadly, this will be the last year they are there because they sold their house to a minister. Something tells me the minister won't be celebrating Halloween, at least not like these people!! So I passed out candy for several hours, and I would guess that we had about 200 kids, at least. Being that Halloween was on a Friday this year, and that it wasn't too horribly cold, the kids came out in droves! My fav costume of the year, besides my niece a…

November Is Pulmonary Hypertension Awareness Month!! - Post #1

This month is important in the PH world. It is Awareness Month, and there are so many ways that PHers can try to make the world aware of this chronic disease. This year, I am going to try using my blog to get the word out on PH and what it is. But I am not the only one! Hopefully many other phriends will blog about PH in one way or another. My personal goal is to TRY to blog a fact about PH every day, if not every other day. So, this first blog will try to answer the "simple" question of:

What is pulmonary hypertension??

Pulmonary hypertension (PH for short) is a chronic lung condition in which there is high blood pressure in the lungs. People with PH do not look like they are sick. The symptoms of PH include shortness of breath, extreme fatigue, and dizziness. A person with PH can get tired from doing simple tasks, such as getting dressed and even talking on the phone. PH is not a disease that you can catch from someone else.