Daily Ponderings

Today's PH fact is: There is hope within the PH community: hope for new treatments, hope for more widespread awareness for the disease, and most importantly, hope for a cure!

Today's PH fact is: There are many conferences and PH forums throughout the year where doctors, nurses, medical professionals, and PHers can learn about the newest info available in the PH world. One of the biggest ones is PHA's Biannual PH Conference, being held this June 2010 in California. It's a wonderful way for phriends to meet other PHers around the world and to learn more about advances in PH treatment !

Today's PH fact is: PHers need support before, during, and after diagnosis. It would be wonderful if their family and friends could be there for that support, but sometimes they are not. It's great comfort when PHers find other phriends who really know what it's like to live with this disease. Whether in PH chat rooms,... Facebook, or live PH support groups, PHers are not alone with this disease when they need support!

Today's fact is: Many PHers take other meds to help treat symptoms of PH, such as blood thinners (Coumadin or warfarin), heart meds (like digoxin, which helps regulate heart beats), diuretics (like Lasix), calcium channel blockers (CCBs, which do not work on all PH patients), and oxygen. These meds work together with the PH drugs to help relieve symptoms of PH.

Today's PH fact is: While PH may be a crappy disease, PHers have much to be thankful for. They are thankful for a doctor who finally diagnosed what they are living with. They are thankful for the meds that help to control symptoms. They are thankful for family and friends who have stuck by them through the tough times. They are also thankful for new phriends who completely understand what they are going through!! Happy Thanksgiving to all my family and friends, and to all my phamily!! Each and every one of you have helped me get through my hard times in your own way. I am so blessed to have you all in my life!!

Today's fact is: As mentioned previously, Revatio (Viagra) and Adcirca (Cialis) are 2 ED drugs that have been approved to treat symptoms of PH. They work by opening up the blood vessels more so that more oxygen-rich blood can be carried into the lungs, helping to relieve symptoms. Revatio is taken 3x a day, while Adcirca is only taken once a day.

Today's PH fact is: Letairis is another pill that can be taken to treat pulmonary hypertension. It works much in the same way as Tracleer, only it is not supposed to be as harsh on the liver as Tracleer. Monthly bloodwork still must be done with Letairis, however. Letairis has been used alone or in a combo treatment with other PH drugs.

Several weeks ago, we had some beautiful summer-like weather, despite the fact it was almost the end of October, and sometimes we get snow by then! The one day when the o2 guy was here, I had a few ladybugs come into the house. We got a couple out, but over the next few weeks, I've noticed one that has been lingering around. I don't know why, but I find this little bug comforting. I've seen it on the curtains in my living room, then a few days later it was hanging out on the kitchen light. A week after that, I happened to spot it in a place I never thought I'd see it, on a very small bottle of orange Vodka Stoli that I've had forever on my kitchen windowsill! This little ladybug was just hanging out in the sun that was coming in through the window. Just when I thought that the little ladybug had probably escaped somehow or met it's demise in my apartment somewhere, I saw Mittens going nuts one night while I was making jewelry. Since I always have my earphones o...

Today's PH fact is: Ventavis and Tyvaso are two types of inhaled meds to treat PH. Ventavis came out in 2006, and usually requires many inhalations during the day. Tyvaso came out this past summer, and does not require as many inhalations as Ventavis, and the time spent using it is much shorter.

Mandy and I had a jewelry party here last night, and I'd been getting ready for it for 2 weeks. I was trying to make as much stuff as I could, and this week I had started trying to clean around here. Yesterday I spent the day still getting ready, and didn't really rest much. I got a 15 minute nap, which did help! The party was from 6-1opm, and most people got here in the 7pm hour. It was alot of fun! I made some sales, although not as much as I had the past couple years. Oh well, at least it was something! I had more fun just chatting with friends and family, and eating food. Holy crap, we had soooo much stuff to snack on! And now there are leftovers and no one wanted to take stuff home. Which means, I snack on them. lol Anyway, I was really sore when I went to bed last night because I had basically been standing most of the day. This morning when I got up (almost at 10:30!), I felt like I'd been hit by a bus! I'm so tired, and very achy (and I have a feeling the one T...

Today's fact is: Tracleer was the first pill to treat PH. It is taken twice a day, 12 hours apart. Patients starting Tracleer may not notice full benefits from it for a few months, because it takes time to really work. Bloodwork is required monthly for Tracleer because it can be harsh on the liver. Tracleer causes severe birth defects, so women are advised not to get pregnant while taking it.

Today's PH fact is: Remodulin is another IV treatment for PH. It does not need ice packs like Flolan does because it has a longer half-life. Remodulin can also be used subcutaneously, although it can cause much pain and discomfort after every site change.

Today's PH fact is: The very first FDA approved drug to treat pulmonary hypertension was Flolan in 1995. Flolan is a continuous IV treatment. Flolan involves mixing the med and using ice packs to keep it cold. Flolan is often prescribed if the patient is very ill after being diagnosed, or if other PH meds have been tried and haven't worked well enough. For many, Flolan is a life-saving drug!!

Today's fact is: There are so many doctors and other medical professionals who do not understand what PH really is, which oftens leads to the reason why so many PHers are misdiagnosed for years. This is why patients need to help educate their doctors and medical professionals (including EMTs), with brochures, CD-Roms, PH conferences, posters, etc. The PHA provides many materials to help educate!!

Today's PH fact is: Today is Blogging for PH Awareness Day! This is a chance for PHers all around to blog about their experience with this disease! Please visit http://phawareness.blogspot.com/ to read the stories of PHers who do not have a blog, but wanted to share their story. There is also a list of blogs by other PHers!

Today's PH fact is: Pulmonary hypertension affects a person's mental health as well as physical health. Many times, a person diagnosed with PH goes through almost the same stages as the passing of a loved one. There is denial, anger, depression, a loss of "old self" after diagnosis. PHers need support from family, friends, and phriends in trying to deal with this disease! I guess I sort of feel a little lucky having been diagnosed with PH since 9 months old. The people I've grown up with pretty much understand my limits, and how I feel a lot. Of course, new people just don't get it. They think I seem fine, besides the fact I wear oxygen. Or, they feel so sorry for me because I wear oxygen, and don't get why I'm wearing it after I tell them. I have gone through losses of friends because of this disease, but thankfully not too many. I do try my best to stay positive about my health, and try to inform others about PH and what it's like. I also try to ...

Today's PH fact is: There are many people living with pulmonary hypertension who benefit from doing some sort of exercise program, particularly pulmonary rehab. In a pulmonary rehab gym, PHers are given o2 (if needed), and guidance on exercises that they can do, including walking on the treadmill, light weights, exercise bikes, and arm cycles. Even in small amounts, exercise has been proven beneficial to those with PH! I have been going to pulmonary rehab for over a year now, and I am so happy with being able to exercise! I go at my own pace, if I can't do something, I don't push myself. It's been a great way to stay in shape, and be able to have a little more energy to get through my days. I highly recommend it for anyone living with PH, if they ask their specialist about it!

Today's PH fact is: Many people with pulmonary hypertension need to be on a low-sodium diet because of fluid retention. When there is excess fluid in the body, and in the blood vessels, the heart has to work even harder to try to get that fluid out. When the heart works too hard for a long period of time, it becomes enlarged, which may lead to right-heart failure. I am one of the lucky ones who has not had a problem with fluid retention, and I thank my lucky stars for that. It doesn't mean I'm exempt from it, but at least if I know I'm retaining fluid in my ankles or feet, then I have a serious problem going on! I'd need to call my specialist asap! This doesn't mean that I don't care about my salt consumption. I do really try not to use salt, or eat foods high in salt. When I cook, I barely use it. When I'm out at a restaurant, I don't use it then. I am not like my dad, who could pour a container of salt on his food and still want more. YUCK!!

Today's PH fact is: Pulmonary hypertension is probably one of the only illnesses where a woman can say an erectile dysfunction drug is helping her to breathe!!!! Both Viagra (Revatio) and Cialis (Adcirca) have been FDA approved to treat PH!

Yesterday afternoon, I found out on the news about an H1N1 flu shot vaccine clinic in Niagara County. I caught the info at the last minute, so I didn't know what time it was or exactly where. I tried all day to find info, and finally did last night. After talking with my friend, Renee, we decided to meet there and go together! I'm glad we did! We spent about 2 1/2 hours in line during the entire process. The clinic started at 11am, we got there a bit after 10am, and there were already over 100 people in line. Apparently some people started showing up at 8am! I was so thankful that at least it wasn't too bad outside, since that is where we had to stand in line. The sun has been out all day today, and it's probably about 55 now. So, it's not how I really wanted to spend my morning/afternoon, but at least I got the shot! And, I had good company while waiting!! Thanks, Renee!! Oh yes, after a little while, I happened to see Mandy across the parking lot standing in line ...

Today's fact is: Chest pain is a fairly common symptom in patients with PPH, occurring in at least1/3 of patients. The cause is unknown, although many experts in the field suspectit is because the muscle wall of the right- sided pumping chamber of the heart,the right ventricle, is not getting enough blood supply to meet the needs of the increased work it has to do because of the high pulmonary artery pressure. Some also believe that stretching of the pulmonary blood vessels in response to high pressures can cause pain.

Today's PH fact is: What is the life expectancy with PAH? There is no simple answer to this question. Life expectancy depends on many factors. Without knowing the specifics of each case it is impossible to even hazard aguess. Even when the specifics are known, survival is very hard to predict. Even though patients with advanced pulmonary hypertension may have a substantially shortened life-expectancy, current treatments appear to help most patients live longer with significant improvements in function and quality of life. Yesterday, I was out from about 11:30am til 6:30pm! I got more jewelry from Mandy first to put in my friend's store for the weekend, picked up my friend, Dee, got to the store and chatted for awhile with Mary. The store looks so cute, and definitely a lot better than the last time I was there! It has windows!! Mary sold a few things of mine and Mandy's, which is very cool! We'll be getting checks when there's a large enough amount to send them out....

Today's PH fact is: Can PH run in families? Yes. Approximately 6-10% of cases of primary pulmonary hypertension are familial. If a patient is diagnosed with PPH, all first order relatives (parents, children, siblings) should be screened, usually by echocardiogram.

Today's PH fact is more of a request! November is Pulmonary Hypertension awareness month. PLEASE, please take a few minutes to complete the quiz at the following link. A drug company, Gilead, will donate US$10 to PHA for every person who completes the quiz. Anyone can take this quiz, PHers & non-PHers! Thank you, thank you, thank you!!! http://pahconnect.com/Questions.aspx I've been posting everything for awareness month here and on Facebook. Today when I posted this on FB, I asked non-PHers to let me know if they took the quiz by leaving me a comment. As of right now, I've had 8 people take the quiz! Many got only one wrong. It's so easy to do, so if you are reading this out there in blogland, please do it, too!!

Today's PH fact is: Oxygen therapy is something many (not all) PHers need when they have low o2 sats. Some only need to use it at night, some need it all day. O2 helps the heart work better. O2 definitely is something to get used to, but when worn as directed, it certainly helps a PHer get through the day!

Today was a good day for me! The weather was really lovely. Who can beat 65 degrees in November?? Tomorrow is supposed to be near 70! Of course, that bubble bursts when Tuesday drops about 20 degrees. Oh well, such is life in Western NY! I took advantage of the nice weather to go to Walmart and a couple other places. I enjoyed myself. I've been feeling rather yucky for a week, dealing with pain from a stupid crockpot injury last weekend. Sounds ridiculous, doesn't it?? But I lifted the thing higher than I should have, and I ended up with chest pain and should/arm pain for nearly a week. It's finally starting to get better, at least I hope so. So since I was feeling decent, I got myself out of the house! Tomorrow I'll be out for a bit to get bloodwork done in the morning, and then I think I'll sit on the front porch for a bit to enjoy the last warm day for awhile! I went to a wake this afternoon for a friend's mom. I actually went to grade and high school with ...

Today's PH fact is: If you or someone you know has been possibly diagnosed with PH, the most important thing to do is find a PH specialist. A PH doc is a pulmonologist or cardiologist who specializes in treating PH patients. Some PHers are lucky to have a PH specialist within their region, but many must travel long distances to see one. To find a PH doc, go to http://www.phassociation.org/Find_A_Doctor/ .

Mandy and I were hoping we'd be able to get a few jewelry parties booked for the holidays, but so far we've only had one, for the first Friday in December. So, last night, after thinking about it for a bit, I asked Mandy if she'd want to do one here. I have the jewelry room to display everything, which is so much better than trying to cram it into the living room!! So, she agreed! I've told about 16 people today, and I know Joan's going to say something to a few people, and Mandy has a couple to tell. Hopefully we'll be able to make some sales. We decided to have it November 21st, so that leaves 2 weeks for us to make stuff. I'm freaking out a little! I finished making necklace sets for a phriend tonight, then made one illusion necklace, and layed out a pattern for another triple illusion set that I can work on whenever I get a chance to do it. I wish I had money a few weeks ago to buy crimp beads, because I am almost out! The ones I did order won't be h...

Today's PH fact is: A right heart catheterization is the one test that measures the exact pressures in the heart to see if someone has pulmonary hypertension. If an RHC confirms PH, many other tests may be done to see if there is a specific reason PH has occurred, and how best to treat it. This makes the PH patient feel like a guinea pig!!

Today's PH fact is more of an experiment: Wonder what it feels like to have pulmonary hypertension? Wrap an Ace bandage tightly around your chest. Breathe through a straw. Do it quickly for 5 minutes to see how fast your heart is pounding. That's what it feels like to have PH while doing the most mundane things, like making a bed, going up a flight of stairs or an incline, carrying a laundry basket, etc, etc, etc.

Today's PH fact is this: There is no cure for pulmonary hypertension. However, since 1995, there are now 8 FDA approved medicines and treatments meant to help the symptoms and progression of PH. Some people are one one med, some are on three meds. Each med costs a few thousand dollars a month. That's right, A MONTH!!

Today's PH fact of the day is: Pulmonary Hypertension can be caused by a variety of reasons, including autoimmune diseases, congenital heart conditions, HIV infection, drugs and toxins (including some diet drugs, like fen-fen, which was banned), connective tissue diseases. When no reason can be found in causing PH, it is called Idiopathic PH. I had to babysit this morning for my little nephew, so I got there a bit after 10am, talked to Mandy for a few minutes, then sat down to watch Sesame Street with the little guy. Let me tell you how hilarious Sesame Street is for adults! While educating children, the writers of the show have also found ways to entertain the parents or caregivers who may be watching the show with the children. I was laughing hysterically and some stuff! For example, I am a huge fan of Law & Order: SVU (Special Victims Unit). Well on SS today, they had Law & Order: SLU (Special Letters Unit), and they had to find the missing letter M. There were 3 detect...

Today's PH fact for the day is this: The symptoms of pulmonary hypertension often mimic other diseases or illnesses, including asthma. For this reason, so many people are often misdiagnosed for long periods of time because they are told they have asthma, or they need to lose weight, etc. Symptoms of PH include shortness of breath (SOB) when doing the simplest of things (like walking down a hallway or getting dressed), extreme fatigue, chest pain, dizzy spells, and fainting.

Today's PH fact of the day is this: Pulmonary Hypertension can be found mainly in women of childbearing age, HOWEVER, PH does not discriminate! Any child, man, or woman of any age can be diagnosed with PH. On another note, I went to see the Michael Jackson movie this afternoon with Dee. This Is It was a fitting tribute to a man who had such overwhelming talent. I loved the music, of course. Almost all the songs are on my mp3 player, and I listen to them at least 3 times a week while doing things around the house. What I found fascinating in the movie was how much Michael was involved in every aspect of this concert. He was there when they were trying to find dancers, he was there making suggestions of when to start this sound and when to end that one. He never shouted and thanked everyone for anything involved in making the show just right. It really would have been one heck of a concert to see! If you are an MJ fan, you really should see this movie! I admit I got a bit teary-eyed...

It's PH Awareness Month!!! Once again, I plan on posting every day a fact about Pulmonary Hypertension. Last year I had some long posts, some short ones. This year, it's going to be just a fact about PH. I'm hoping someone out there will learn something!! Here goes! Pulmonary Hypertension is NOT high blood pressure! It is a chronic lung disorder in which the pulmonary artery (from the heart to the lungs) is constricted, causing high pressures in the lungs. It can be life-threatening if not treated!