Wyoming Breezes

November is Pulmonary Hypertension Awareness Month Pulmonary Hypertension is often not diagnosed in a timely manner because its early symptoms can often be attributed to those of many other conditions. Some of the symptoms of PH include: Chest pain Breathlessness Low energy Dizziness and fainting Swollen ankles and legs Bluish lips and skin These symptoms may seem common and simple, but they severely impair a PH patient's ability to lead a normal life. Simple activities like walking, dressing oneself, and cleaning can become difficult to perform. Thus, a normal, healthy-looking individual might be incapable of some basic functions due to PH.  I am one of the few who have mild secondary pulmonary hypertension, caused by another illness, in my case, severe sleep apnea. By treating the apnea aggressively and by taking my oral medication, my PH has stabilized. Many other PH patients are not so fortunate and must have a drug ( Flolan ) directly infused into their heart t...

Despite Mother Nature and the mantle of white that she dumped across Wyoming, the Pulmonary Hypertension Support Group I lead met on Saturday.  The group was honored to have Dr. Yalamanchili from Texas Tech. University Health Science Center (Amarillo, TX) as our guest speaker. He presented information about PH and its treatments, how to cope with PH, and assistance that is available for PHers.  Unfortunately, attendance was low because another snow storm roared through the state on Friday night. Many members did not want to venture out: those that did reported snow-packed on the highway and winter-driving condition The couple sitting in the photo drive over 150 miles one way to regularly attend the meetings. Their loyalty to the group continues to humble and motivate me.

Yesterday was busy and left me tired, but it was very fulfilling. The Pulmonary Hypertension Support Group that I lead covers the whole state, but distance prevents many of the patients in the southeastern corner from attending the meetings held in the center of the state. Several months ago, I began planning yesterday's meeting, and if the attendance at the meeting is any indication of the need, then I am glad that I did. Many of the nine Cheyenne PH patients hadn't met previously, so in that respect, the meeting was a success. In addition to that, the program provided them with the latest information on Pulmonary Hypertension and its treatments. Everyone left with an full stomach, a packet of goodies, some new friends, and some helpful information. I consider that a successful day.

Nearly three months ago I emailed the reporter for the Health section of the only state-wide newspaper in Wyoming, the Casper Star Tribune, and requested she write a story about Pulmonary Hypertension during November. I tried to pique her interest with facts about PH. Then a three weeks later, I presented her with a packet of information and invited her to our September meeting. I hoped that she could attend and interview our members who are scattered across the state. The reporter said she was interested in the topic but that her schedule was full. I was discouraged, but hopeful. Then last week she called and interviewed me over the phone; I gave her contact information for my co-leader and another member and emailed her some photos of our group. Not knowing when the article would appear filled me with anticipation. Sunday's paper always has an ad that hints at the articles to be featured in the coming week, and when I read the paper, there was one of the photos I had sent. Our gr...

The second online community I recommend for those wanting to learn more about pulmonary hypertension is the Pulmonary Hypertension Association . I especially like PHA's site because the medical information is up-to-date and accurate and approved by a panel of medical professionals. PHA's mission is to educate the public about pulmonary hypertension and to obtain funds for PH research. The web site offers information to patients, medical professionals, caregivers, and the media. Members of PHA are supporting expanded research and education, building awareness of PH and public support, and changing the history of this illness. By expanding its membership, PHA can do much more, much sooner. Membership benefits are listed here . PHA hosts an International conference every two years. It is a gathering of patients, caregivers, medical professionals, and exhibitors. The most recent conference was June 2008 in Houston. I attended the gathering and was amazed at the atmosphere: PH doct...

Pulmonary Hypertension: A Patient's Survival Guide is an excellent book and, in my opinion, should be in every public library. This text gives accurate and up-to-date information on Pulmonary Hypertension and answers all the questions that newly diagnosed patients ask. It provides information on PH and its treatments, tests, and resources. Members of the Pulmonary Hypertension Association can purchase the book for $15; non-members, $25. At any price, the book is a bargain. Purchasing information is available here . This is the third edition of this book, and it has been translated into several foreign languages.

Chronic illness affects the body, but it also takes a toll on the mind and the spirit. Patients walk a very, fine line when they share with friends and family. If they share too much, the listener tunes them out or thinks they complain too much. If they share too little, the family and friends dismiss the complaints and concerns too quickly to get to the root of the problem. Finding a balance is difficult, but necessary. If the patients do not have an outlet for the frustrations, then depression settles over them. Support Groups can offer that outlet for the patient (and sometimes the caregiver) in a safe environment where the listeners understand because they live with the same issues. PH support groups can be located on Pulmonary Hypertension Association and PH Central websites.

Leslie Polss is a PH patient who uses humor and her drawing talent to create cartoons on the diagnostic process , life with oxygen , medical indignities , and insurance issues . Leslie's humor give a perspective that comes from "being in the trenches." Enjoy her cartoons. These cartoons are posted with Leslie's permission.

Pulmonary hypertension is a serious disease, and without proper care it can be deadly. It is imperative that the PH patient seek a physician who specializes in treating pulmonary hypertension. Often these doctors are associated with teaching hospitals where PH research is on-going. Many patients travel hundreds of miles (I drive to Denver, CO which is over 400 miles, one way) for their appointments with their PH doctors. Since these doctors are also researchers and professors, their schedules are full: it is typical to have a 3 - 4 month wait for the initial appointment. Doctors can be found on the Pulmonary Hypertension Association and the PH Central websites.

I am a leader for the Wyoming Pulmonary Hypertension Support Group. Our group started in April of 2008, and currently, we have 20 members scattered throughout the state. Contrary to the national PH statistics, 35% of our members are men. A majority of our members are in the 40 - 65 age range. Two members have idiopathic pulmonary hypertension (no known cause for the PH) and eighteen have PH that is secondary to other diseases, ranging from sleep apnea to scleroderma. Three members are treated with Flolan, an continually, infused medication. Two use Remodulin, a subcutaneous, infused medication. Others take Revatio and Tracleer (oral medications), beta-blockers, and calcium channel blockers. Nearly every member has or is currently using oxygen. Everyone is grateful for the current PH medications because prior to 1995, PH had no treatments and a diagnosis was literally a death sentence. Research is on-going and great progress is being made. It is every PH patient's hope tha...

PH is definitely linked to gender. Women are more than twice as likely as men to develop PH. At some PH centers across the United States, the occurrence of PH ranges from being twice as common in women to nine times as common. Among 571,461 patients hospitalized with PH between 1995 and 1998, 61 percent were women and 37 percent were younger than age 65. Women usually develop PH during their childbearing years for unknown reasons. For a woman with PH, the question of pregnancy can be a painful one because it is associated with life-threatening risks for both mother and baby. A review of reports published between 1978 and 1996 that looked at maternal deaths within 35 days of delivery, found that the death rate for patients with PH ranged from 30 to 56 percent. Women with PH are often forced to choose between having a family and protecting their own lives – a choice most healthy women never have to face. Even though pulmonary hypertension strikes women more often than men, men are also a...

Every Pulmonary Hypertension patient quickly develops a new vocabulary. Here are a few terms and acronyms. PH = pulmonary hypertension PAH = pulmonary arterial hypertension PVH = pulmonary venous hypertension PAP = pulmonary artery pressure MPAP = mean pulmonary artery pressure edema = swelling, usually due to fluid retention SOB = short of breath RHC = right heart catheterization O2 = oxygen syncope = faintingbecause of a temporary insufficiency of blood to the brain 6MWT = six minute walk test echo = echocardiogram PFT = pulmonary function test ascites = fluid retention in the abdominal cavity CCB = calcium channel blocker INR = Pro-time (how long it takes the blood to clot) CO = cardiac output NO = nitric oxide and a potent vasodilator in gas form dyspnea = SOB (short of breath)

Pulmonary Hypertension (PH) is called an "invisible" disease, and patients are often judged harshly and doubted by family and friends and sometimes even by medical professionals. Nearly every PHer has been accused of being a hypochondriac at least once.

Governor Dave Freudenthal signed a proclamation declaring November Pulmonary Hypertension Awareness month in Wyoming. The proclamation can be read online here . Tuesday, November 4, 2008 the City of Riverton will declare November Pulmonary Hypertension Awareness Month at the City Council meeting.

Pulmonary Hypertension is the OTHER high blood pressure, and unfortunately, it cannot be measured as easily as systematic hypertension, commonly called hypertension or high blood pressure. The pressure in the pulmonary artery (PA) can be measured two ways: an echocardiogram which can estimate PA pressures and a right-heart catheterization (RHC) which is the most accurate measure of PA pressures and is considered the gold standard for measuring PA pressures. These tests become routine for a PH patient. When I was first diagnosed, I had an echo every three months, then every six months, and now, that my PH has stabilized, I have echos once a year. I have had two RHCs since I was diagnosed. This test is invasive, so many PH specialists avoid excessive use of the RHC.

November is Pulmonary Hypertension (PH) Awareness Month, so throughout the month, I will be posting information about this disease that changed my life dramatically in 2003. Today's PH tidbit: Pulmonary Hypertension is often not diagnosed in a timely manner because its early symptoms can often be attributed to those of many other conditions. Some of the symptoms of PH include: Chest pain Breathlessness Low energy Dizziness and fainting Swollen ankles and legs Bluish lips and skin These symptoms may seem common and simple, but they severely impair a PH patient's ability to lead a normal life. Simple activities like walking, dressing oneself, and cleaning can become difficult to perform. Thus, a normal, healthy-looking individual might be incapable of some basic functions due to PH. More information can be found at Pulmonary Hypertension Association .

Take one ballroom, add over 1,000 people, a fabulous hotel and staff, and some informative sessions, and you have a weekend of fun and education. I was fortunate to be awarded a scholarship to attend the 8th International Pulmonary Hypertension (PH) Association Conference. The conferences are held every two years and include not only PH patients but also physicians and representatives from numerous pharmaceutical companies. Scientific sessions (for medical personnel) were held on Thursday. Patient-led sessions on Friday covered numerous topics for the PH patient. On Saturday and Sunday, physicians and nurses hosted sessions for patients and their care-givers. I took copious notes so I can use the information in the newsletter that I prepare for the Wyoming Pulmonary Hypertension Support Group. Posters that explained current research projects were on display and many of the researchers were available to answer questions. Much of the information was beyond my understanding, but the...