Friday, November 30, 2012

Annnnnnd, It's Over!

Today is the last day for Pulmonary Hypertension Awareness Month. I'd like to think I helped spread some awareness through my blog, my Facebook statuses (which were the same as  my blog, mostly lol), and this year, through my PH display at 2 hospitals! I'm very happy I was given permission to do the display, and I am hoping I can do it all over again next November! Until then, I will continue to try making people aware of this crappy disease, because:

-Anyone can have PH
-Age and gender make no difference
-The symptoms mimic other illnesses, so a person can be misdiagnosed for years
-If not treated as soon as possible, it can lead to right heart failure

Thursday, November 29, 2012

Just A Quick Fact

I get asked often when I'm seen by someone wearing the oxygen if I used to smoke. No. Never. Dated a smoker a long time ago, and it almost felt like I was smoking, but no. I've never touched a cigarette.

PH is NOT caused by smoking.

There is my simple PH fact of the day!

Wednesday, November 28, 2012

Is And Is Not


I wrote this a few weeks ago to include on my PH display board since I had some space and needed something to fill it!! Since I'm winding down on PH Awareness month, I thought I'd share this info again!

Pulmonary hypertension

Is NOT

High blood pressure

*****

Pulmonary hypertension

Is NOT

Asthma

*****

Pulmonary hypertension

Is NOT

COPD

*****

Pulmonary hypertension

Is NOT

Obesity

*****

Pulmonary hypertension

Is NOT

Sleep apnea

*****

Pulmonary hypertension

IS

High blood pressure in the lungs

*****

Pulmonary hypertension

IS

Life-threatening if not treated

*****

Pulmonary hypertension

IS

Diagnosed by right heart cath

*****

Pulmonary hypertension

IS

Treatable

*****

Pulmonary hypertension

IS

Life changing


Tuesday, November 27, 2012

Eisen-what??

The combination of my PH and congenital heart disease is known as Eisenmenger's syndrome. A phriend's mother posted all about Eisenmenger's today on Facebook, because her daughter also has Eisenmenger's syndrome. Since Jane let me, I'm just copying and pasting her post here!

Eisenmenger's is also considered a rare disease by NORD. I couldn't find out approximately how many people have the disorder though but it has to be under 200,000. 

Eisenmenger syndrome progresses over time as a result of a complication of a heart defect and the effects of high bl
ood pressure in the lungs. This hole in your heart causes blood to flow or circulate abnormally in your heart. Oxygen-carrying blood (red blood) from the left ventricle mixes with oxygen-poor blood (blue blood) from the right ventricle. This mixed blood then returns to your lungs instead of going to the rest of your body, causing high blood pressure in your lungs. High blood pressure in your lungs (pulmonary hypertension), when significant, can cause serious medical conditions.

Congenital heart defects of this type include:

patent ductus arteriosus (PDA) - a connection between the aorta and the pulmonary artery which allows oxygen-rich (red) blood that should go to the body to recirculate through the lungs.

atrial septal defect (ASD) - an opening in the atrial septum, or dividing wall between the two upper chambers of the heart known as the right and left atria.

ventricular septal defect (VSD) - an opening in the ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles.

atrioventricular canal defect (AV canal) - a complex heart problem that involves several abnormalities of structures inside the heart, including an ASD, VSD, and improperly formed mitral and/or tricuspid valves.

Eisenmenger syndrome is a life-threatening condition requiring careful medical monitoring. Medications can improve symptoms and prognosis.

Symptoms of Eisenmenger's include:

cyanosis (pale blue or grayish skin due to decreased oxygen in the blood)
dyspnea on exertion (shortness of breath with activity)
shortness of breath at rest
fatigue
chest pain or chest tightness
heart palpitations ("skipping beats" or "racing")
headache
dizziness or syncope (fainting)
paresthesias (numbness and/or tingling of fingers and toes)
blurred vision

Complications of Eisenmenger's can be:

blood clots (e.g., deep vein thrombosis in extremities)
hemorrhage (bleeding)
stroke
brain abscesses
gout
kidney failure

Some individuals with Eisenmenger syndrome who have no other health complications may live into middle adulthood, and a few may survive into the fifth or sixth decade of life.

Some considerations related to Eisenmenger syndrome include, but are not limited to, the following:

Pregnancy is not recommended for females of child-bearing age with Eisenmenger syndrome. Pregnancy may pose a high risk of death for the mother as well as complications for the fetus due to effects of low oxygen levels in the blood.

Any anesthesia and surgery is considered high risk and should be carefully planned. Collaboration with a cardiac specialist is recommended.

Air travel and high altitude exposure requires adequate hydration (fluid intake) and supplemental oxygen to prevent complications.

Severe headache, dizziness, syncope (fainting), or changes in level of consciousness should be taken seriously and evaluated on an emergency basis.

Smoking and alcohol intake are not recommended.

Coughing should be controlled or prevented with a strong suppressant medication to prevent risk of pulmonary hemorrhage (bleeding from the lungs).

Flu shots are recommended annually, and pneumococcal vaccine should be received according to the physician’s recommendation.

Eisenmenger syndrome treatment is aimed at controlling the symptoms and managing the condition. Although there's no cure, medications may help you feel better, improve your quality of life and prevent serious complications. Doctors don't recommend surgery to repair the hole in your heart once Eisenmenger syndrome has developed, and any surgery may be life-threatening. It's important that you're treated by a doctor who has expertise in Eisenmenger syndrome.

Monday, November 26, 2012

Spoons Anyone?


Quite a few years ago, I heard about the Spoon Theory, a story written by a woman, Christine Miserandino,
who is living with Lupus. She was trying to explain to a friend how she deals with her energy every day, and the friend didn't get it. So she explained it by using spoons. 

The Spoon Theory is a story that can fit almost anyone living with a chronic disease, not just Lupus. It completely fits the life of someone dealing with pulmonary hypertension. There are some days when I might have a ton of spoons, and I can do a bunch of things and feel pretty decent. There are even days when I miraculously end up with some extra spoons by the end of the day! And then there are those days when I might drop all  my spoons on the floor the minute I get out of bed in the morning. I have often used this story to explain to my family and friends how it feels to live with PH. They seem to understand when I tell them I don't have enough spoons to deal with something. It sucks, but at least it's a way to open their eyes.


Sunday, November 25, 2012

Over A Century Ago

The first ever reported case of Pulmonary Hypertension was recorded 121 years ago.

37 years ago, still not much was known about the disease.

Today, we have 9 FDA-approved medications to help improve symptoms experienced by the disease.

There is still no cure.

YET.

Friday, November 23, 2012

A PH Tip

Nothing makes my heart start racing with immense anxiety when I am faced with something most people take for granted: stairs. Or, a hill. I immediately think, "Oh crap, I have to get up that! I'm gonna die!" It may sound silly, but I truly hate the feeling of a rapid heartbeat and being so short of breath I think I might pass out. And the sad thing is, I've been slowly increasing the grade on the treadmill at rehab so I can face stairs or a hill a lot better. I do think it's helped me a little, but I still have that fear of climbing!!

So, here's a PH tip for going up stairs: Go up backwards. Seriously, I have heard some PHers talk about this, but all I could think was how utterly ridiculous that must look! Well, I tried it several times this summer. And guess what? You look utterly ridiculous, BUT, it's so much better than going up the regular way! I would get to the top and realize I wasn't going to die! The shortness of breath was minimal, and my heart wasn't ready to pounce out of my chest! Whoo hoo! So I try to do that whenever I see stairs, and I also try not to care what people must be thinking!! Who knows, maybe they'd go try it themselves...when no one is watching, of course. 

Thursday, November 22, 2012

Giving Thanks

Today is Thanksgiving here in America, and it happens to be a favorite holiday of mine. Mainly because of the food! lol No really, Thanksgiving is great to spend time with family and friends, and to eat. A lot. :)

I happen to be thankful for so many things. My family is my life, my friends are wonderful, and my health is stable at this point in time. I have a roof over my head, clothes to wear, and a very loving "kid" I just adore.

And it may seem odd to say this, but in a way I'm thankful for PH. Obviously I don't love having this illness, nor do I wish it upon anyone. But what I'm thankful for is that it's given me a sense of purpose. It's allowed me to help others. It's given me time. Time to spend with my family and friends since I don't work. It's given me the ability to empathize, to feel a connection and understanding with those dealing with PH or any sort of illness. It's allowed me to appreciate the little things in life. Had I been a healthy person with a busy lifestyle, I might not see all those wonderful small details that God has given us. So yes, I am thankful for PH in these ways, but I will surely be most thankful WHEN one day there IS a cure!


Wishing all of you and yours a very Happy Thanksgiving!!

Wednesday, November 21, 2012

Experiment

Have you ever wondered how it actually felt to have pulmonary hypertension? I mean, I can say to you that I get short of breath just making my bed sometimes.  Getting dressed some days, especially after a shower, can be a challenge. And in the winter, if I happen to go out to a store by myself, I drive right back home if I can't find a handicap parking spot because I know parking any farther will make me gasp by the time I get into the store.

But are you wondering what that actually FEELS like? Well, try this experiment. Walk up a flight of stairs. But walk up those stairs breathing through a straw. Not just any straw. Use a straw meant for stirring coffee. While you're at it, plug your nose while going up those stairs, breathing only through that tiny straw. Are you gasping for breath by the time you get up there? Is your heart racing, feeling like it's going to bound out of your chest down the street?

Yeah? Well, now you know what it feels like I try to vacuum one rug. Or when I try to go for an extended walk in colder air. Or when I'm just having a bad PH day.

Tuesday, November 20, 2012

It's Personal - Part III

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

I continued working at Head Start, which was challenging and rewarding. It was also exhausting, both mentally and physically, but ESPECIALLY physically. I worked in a building that had two floors, and my classroom was on the second one. As a part of the job, I had to eat breakfast and lunch with my students, which meant we had to go all the way to the basement to eat in one of the cafeterias. This meant I was going up and down four flights of stairs with children at least twice a day, however, I often went up and down way more than that. Seriously, I look back today and wonder how I actually survived the job. The stairs weren't the only thing making me tired, it was also being on my feet a lot, and well, just dealing with 18 little tykes every day! And some days they were just NOT GOOD!! LOL 

During my third year at the job, I started getting major respiratory illnesses. I had double pneumonia the first time, around Thanksgiving. Then I had bronchitis a few months later. It was when I had my third bout with something lung-related that my primary doctor told me to quit my job. I was 24 at the time. Who really thinks they'd retire at that age?? I had never even considered quitting, no matter what the job was doing to my health. If it wasn't for my doctor, who knows what would have happened to me! I really don't think my body could've tolerated that job any longer if I had just kept on working!

So, I stopped teaching. I wasn't sure if I should bother finishing my Master's degree, but I did anyway. And then that was that. What next? My dream had been to teach, and now I couldn't. I spent a very long time just trying to get my health back and wondering what in the world I should do next. I also was referred to the Cleveland Clinic in Ohio for a lung transplant evaluation. I started going in 2002, and a year later I was put on Tracleer. My first shipment included a flyer that opened up an entire new world to me with the link to the website for the Pulmonary Hypertension Association. I spent a week reading the site, crying at the posts on the Message Boards, because OH MY GOODNESS, THERE WERE OTHERS LIKE ME!!! I eventually checked out the chat rooms, and I was hooked! I "met" phriends, and connections were made. It was the most wonderful thing ever!

I am not exactly sure of the year, but I THINK it was 2005 when I was approached about starting a support group in my area. My first thought was "Oh, hell no." I could handle being in front of a group of children, no worries. But in front of a group of adults?? It petrified me. I really didn't believe I could do it. But I said I'd consider it, and I prayed. I prayed about it hard. God must have seen something in me that I couldn't, because he slapped a "YES" on my forehead and I decided sure, why not? I'll give it a try. It still scared me, but I'd try! And after finally getting things set up, I had my first meeting! It was a decent crowd of people, and everyone was really thankful that I had started something. I realized that must have meant they might have felt as alone as I had all the years I spent growing up with PH and not knowing that there were others like me. I got home from the meeting and cried, tears of happiness that I was able to not only help someone else, but help myself cope with the isolation this disease can bring. 

Since then, I have come to the conclusion that I AM still teaching. I may not be in a classroom, I may not be in front of a room of little kids, or big kids, but I am in front of others who want to know more about this disease and how to live with it, not in spite of it. I have "met" so many other PHers in the world wide web communities such as Facebook. I've become a chat room leader on the PHA's website, and a PHA mentor. I get random calls or emails from people sometimes wanting to know all about what the heck they were just diagnosed with, and how in the world to cope. I'd like to think that I'm helping all these people, because I certainly felt so alone once, and received so much support when I finally found a place where people could relate to what I've dealt with my entire life. I know my purpose in life had something to do with teaching others, I just had no idea that God had a different idea of what my classroom would be like. 

Monday, November 19, 2012

It's Personal - Part II

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

Sunday, November 18, 2012

It's Personal - Part I

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

Saturday, November 17, 2012

Where To Turn?

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

Friday, November 16, 2012

At Risk

Although PAH can be diagnosed in anyone regardless of age, race, or gender, there are certain risk factors that can make some people more likely to get the disease. These risk factors include:

-Family history
-Obesity and obstructive sleep apnea
-Gender
-Pregnancy
-Altitude
-Other diseases
-Drugs and toxins

You can read more about these risk factors HERE!

Thursday, November 15, 2012

Does That Come With Sides?

All of the PAH medications come with side effects. Some people experience side effects for a little while, and then they don't deal with them any longer. Some people have side effects constantly. Side effects can include one or more of the following, depending on the medication(s) being taken:

-Dizziness
-Low blood pressure
-Fluid retention
-Irregular heart rhythms
-Nausea
-Excessive bleeding
-Dehydration
-Nosebleeds
-Liver failure
-Blurry vision
-Loss of hearing
-Headaches
-Anemia
-Nasal congestion
-Sinusitis
-Flushing
-Muscle pain
-Heartburn
-Diarrhea
-Jaw Pain
-Bone pain
-Rashes
-Itching
-Swelling

Wednesday, November 14, 2012

Under The Skin

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

Tuesday, November 13, 2012

IV Medications for PAH

The very first type of treatment available for PAH was Flolan (epoprostenol). Flolan has been considered the Gold Standard in PAH treatments for a very long time. It's an IV med that goes straight into the heart via catheter. It dilates the blood vessels and allows the right heart to work more efficiently in pumping the blood. Flolan has a very short half-life, which means the medication only lasts a few minutes in the bloodstream. A pump connected to the line helps to administer the med, and the dosage is adjusted according to the patient's  body weight in kilograms. Flolan must be kept cold, and ice packs are used all the time while using the med.

Another type of IV medication is Remodulin (treprostinil). It also helps to relax the blood vessels to allow for better circulation of the blood in the body. Remodulin is requires a catheter and a pump to administer the med, but it has a longer half-life than Flolan. It also does not require ice packs for usage.

Room temperature epoprostenol was approved in 2010, called Veletri. It does not require ice packs or refrigeration.

Monday, November 12, 2012

Inhale, Don't Exhale!

Currently, there are two inhaled medications for PAH. These are nothing like the asthma meds you may be familiar with!

*Ventavis (iloprost): When used, Ventavis causes direct vasodilation of the blood vessels in the lungs, meaning the blood vessels relax and open up to allow more blood flow through the vessels. Ventavis treatments are done around 6-9 times a day, depending on how the PH patient responds and feels.

*Tyvaso (treprostinil): Tyvaso works very much like Ventavis, in that it goes directly into the lungs through inhalation, and opens up the blood vessels to allow more blood through the vessels. Tyvaso is done in 4 separate treatments a day, spaced evenly apart.

Sunday, November 11, 2012

Oral Medications

There are currently 4 oral medications approved by the FDA to treat PAH symptoms.

*Tracleer (bosentan): Tracleer is an ERA, which stands for endothelin receptor antagonist. Endothelin causes the blood vessels to narrow. Tracleer blocks endothelin, which is produced in overabundance in PAH patients. This helps to reduce blood pressure in the lungs, and to improve activity level. Tracleer is taken twice a day, 12 hours apart. Tracleer requires monthly bloodwork to check for liver failure.

*Letairis (ambrisentan): Letairis is also an ERA, and also works very much in the same way as Tracleer does. It is taken once a day. Letairis does not require bloodwork, although some doctors may still want labs checked occasionally.

*Revatio (sildenafil): Revatio is a PDE5 inhibitor. This means that Revatio relaxes the blood vessels of the lungs to increase blood flow, making it easier for the heart to pump. Revatio is taken three times daily. Revatio is commonly know as Viagra!

*Adcirca (tadalafil): Adcirca is also a PDE5 inhibitor. It is also know as Cialis. The biggest difference from Revatio is that Revatio is taken three times daily, and Adcirca is only taken once a day.

Saturday, November 10, 2012

Conventional Drugs

Many PHers are on one or more of the following conventional drugs to treat symptoms:

Calcium Channel Blockers (CCBs) - These are oral meds which relax the muscles around blood vessels which allows better blood flow. CCBs can also help to regulate heart rates. CCBs are only effective in less than 10% of PH patients.

Digoxin - Digoxin can help the heart pump. It can also help regulate the electrical activity in the heart. It is an oral med taken once a day. I've been on this medication for over 35 years!!

Warfarin (Coumadin) - Warfarin is a blood thinner taken once a day. It must be carefully regulated, so bloodwork is required often. Warfarin can be affected by foods and other medications, so a person taking it must make sure they monitor what they eat and the other things they ingest closely. I was on Coumadin for at least 10 years, and finally stopped it last year to try a baby aspirin instead. I can tell you that I don't miss Coumadin at all!!! lol

Diuretics - These meds help treat heart failure and fluid retention. They are oral pills taken once or twice a day to help reduce the amount of fluid in the legs and/or abdomen.

Oxygen - Yes, oxygen is a medication! Low oxygen can cause the pulmonary vessels to constrict and may worsen PAH. Oxygen levels should be maintained at 90% or above in PAH patients, and can be done be using supplemental oxygen. UNLESS YOU'RE LIKE ME!! My congenital heart defect doesn't really allow me to be anywhere near 90%, even when I'm on a high liter flow of oxygen. My body has become accustomed to the low numbers, but I usually wear the oxygen anyway just because I know it's at least keeping my heart from working too hard!

Friday, November 09, 2012

Mmmmmm, Drugs

Back in 1975 when I was diagnosed with PH, there wasn't anything to cure it, nor anything to treat it. My parents weren't given too much hope, and I can't imagine what that must have been like for them to know that I could die from this crappy disease at any point in time, whether it would be within my first year, or 50 years later. Somehow I managed to live for 28 years before starting one of several meds that had been FDA-approved by that time (in 2003). Today there are 9 drugs available to treat the symptoms of PAH, but the fact remains that there still isn't a cure. YET!

The approved therapies for treating PAH symptoms are:
*Conventional Therapies
*Oral Treatments
*Inhaled Treatment Options
*IV Treatments
*Subcutaneous Treatment
*Lung Transplant

Thursday, November 08, 2012

Types of PH

There are a few types of PAH (pulmonary arterial hypertension):

Idiopathic PAH: The cause of PAH cannot be found.

Heritable PAH: Formerly known as familial or genetic PAH, this type can be inherited, and is relatively uncommon.

Associated PAH: PAH is associated with another disease or condition, such as connective tissue disease, congenital heart disease, chronic liver disease, HIV, drugs and toxins, and more.

CTEPH (chronic thromboembolic PH): PAH is a result of blood clots in the lungs. CTEPH is the only type of PAH that can POSSIBLY be cured by a surgery called pulmonary thromboendarterectomy (PTE), which removes the blood clots from the lungs.

My PAH is a result of congenital heart disease, so I am in the Associated PAH category. I was diagnosed with atrioventricular canal, which is a fancy way of saying I have 2 holes in my heart. Yippee!! The holes have never been repaired, so I've been living with both for 37 years (so far!).

Wednesday, November 07, 2012

Too Many Initials

PH = pulmonary hypertension: I use PH since it's easier to say or type, but it's just a general reference to pulmonary hypertension. 

PAH = pulmonary arterial hypertension: PAH is when the right side of the heart needs to work harder to get blood pumped through the narrowed arteries in the lungs. If the right side needs to work harder, it becomes enlarged, and can eventually fail.

PVH = pulmonary venous hypertension: PVH is PH due to left heart disease, like systolic dysfunction, diastolic dysfunction, and valvular disease. 

Tuesday, November 06, 2012

Testing, 1,2,3

The right heart catherization mentioned in my previous post is the Gold Standard to diagnosis of pulmonary hypertension. But while it is very important, there are other tests given to help determine what may be causing the PH, if anything. These tests include:

Blood tests - An arterial blood gas (abg) is totally not a fun test at all. It's a blood draw, but the blood is taken from the artery, not the vein. It hurts!! But what it tests is the amount of oxygen in the blood. If there isn't enough, the patient may need to be put on supplemental oxygen. Other blood tests check for liver and kidney function, thyroid problems, collagen vascular disease, and any signs of infections or HIV.

Chest Xrays - The chest xray can determine if the right ventricle or pulmonary arteries are enlarged. It also can show if someone has scarring or emphysema.

Electrocardiogram - This test checks the electrical impulses of the heart.

Pulmonary Function Tests - PFTs measure how much air your lungs can hold. They also show how much air is moving in and out of the lungs, and the lungs' ability to exchange oxygen.

Exercise Tolerance Test - Also known as the 6 minute walk, this test is supposed to determine how well a patient can handle exercise. This is the one test that gets repeated with almost every visit to the PH specialist. This test is also one that I find many of my phriends can't stand, including myself. lol

Nuclear Scan - A V/Q scan checks for blood clots in the lungs.

Monday, November 05, 2012

Doctor Doctor

A pulmonologist or cardiologist are doctors who may see only a handful of PH patients in their practice in their career. Some have no idea how to treat PH. Some might think it's not that big of a deal and not offer treatment at all, just monitoring. When a newly diagnosed PH patient comes onto the message boards or into the chat room, the #1 recommendation given to them is FIND A PH SPECIALIST!! What's the difference? A PH specialist IS a pulmonologist or a cardiologist who either sees PH patients exclusively, or the majority of their patients are PHers. It is very important to see a PH specialist since they understand better what to do to help a PHer manage their symptoms.

My own personal experience involves my pediatric cardiologist. Since my PH is due to congenital heart disease, I followed a pediatric cardio for most of my life, up to my early 20s. Dr. G. was wonderful, and I really loved him! But when my symptoms started worsening in my early 20s, he gave me inhalers to try. I look back at this today and realize that he really may not have fully been aware of the symptoms of PH. I didn't even know anything about PH at that time, only that I had it. I didn't have any clues as to what it really meant when the inhalers didn't work, my symptoms continued to worsen, and I was referred by my general practitioner to the Cleveland Clinic for a lung transplant evaluation. I went several times before I was put on my first PH med, and received a flyer in the shipment of that med for the PH Association. That's when I began building my knowledge of everything pulmonary hypertension, and why I now insist that a person see a PH specialist so they get on the right path to treatment!!

Sunday, November 04, 2012

Right Heart Catherization (Sounds Fun, Right??)

I can't tell you the number of people who have come into PH chat, or posted on the PH message boards, who say they have been diagnosed with PH after have an echo done. While an echo is used often to try to figure out what's going on, an echo really never definitively diagnoses PH. The echo is an estimate. The numbers on an echo can be waaaaaay off compared to the actual numbers measured during the only test that truly DOES diagnosis PH: the right heart catherization!


The right heart catherization (RHC) is an invasive procedure. There is a tube inserted into the heart to measure pressures in the heart and lungs. This tube can be inserted through the groin, neck, or even the wrist nowadays (although I'm not sure how many hospitals are using this method, it's pretty new!). I hear most people can ask for some "happy juice" during the test, since usually the patient is not put to sleep, and it can be a little unnerving to go through. If the pressures in the pulmonary artery measure anything above 25mmHg, then the person does indeed have pulmonary hypertension.

Saturday, November 03, 2012

The OTHER Hypertension

As part of having pulmonary hypertension, I wear oxygen. I've been wearing it for the past 10 years at least. When I am out and about, I notice people looking at me, but I'm at the point where I don't care anymore. It's a part of who I am, and it gives me the ability to actually BE out and about! 

I have gotten my share of random strangers coming up to me asking why I'm on oxygen. Many of them are older, some are also wearing oxygen, others are children. When I am asked why I'm on oxygen, I tell them I have pulmonary hypertension. I'd say about 99% of the people say, "Oh, I have high blood pressure, too!" 

Well, that may be true, BUT, pulmonary hypertension has nothing to do with the high blood pressure everyone is familiar with! It is the OTHER hypertension. PH is high blood pressure in the lungs. If it is left untreated, it will eventually cause right-sided heart failure. 

Oh, and by the way, my regular blood pressure is just fine, thank you!

Friday, November 02, 2012

Sometimes It's PH!

Shortness of breath.

Extreme fatigue.

Dizziness.

Chest pain.

Swelling of the arms, legs, ankles, or abdomen (edema).

These are symptoms of so many conditions. Doctors usually consider asthma, COPD, and being overweight right off the bat when a patient complains of these symptoms.

BUT!!

Sometimes it's PH!! Doctors really need to start including PH as part of the list of conditions to consider when a patient is having these symptoms! To find out more about this new awareness campaign that the PHA started this year, especially geared toward medical professionals, please go HERE!!

Thursday, November 01, 2012

It's November!! You Know What That Means!!


PH Awareness Month has begun! And while I have so much information to share about PH and what it is: the symptoms, the treatments, dealing with it on a daily basis, etc, I'm taking the time today to remember my phriends (friends with PH) who have sadly passed away from this crappy disease.

I became a part of the PH community when I started my first-ever treatment back in 2003. I didn't know there was a website available, and only discovered it after opening my first shipment of Tracleer. Every shipment includes a lot of paperwork, and a flyer for the PH Association was included. I logged on and began at least a week-long cry fest! The tears were of shock that there were others out there like me. They were tears of joy that there were others out there like me!! I read the message boards for days, every single message, and I started to post when I felt comfortable enough to share my story. It was an amazing experience, to finally be able to relate to others.

Not too long after that, I thought I'd try out the live PH chat rooms. I became hooked. It was so cool to share in real time experiences I've dealt with all my life. I will never forget the two ladies who made me feel so welcome in the chat room: Tanya (Seaspritemo) and Brenda (GeorgiaBrenda). Tanya was funny as hell. She made me laugh every time I was in the room, and eventually the few times I talked to her on the phone. She was a fighter, or a phighter,and had many problems to deal with on top of her PH. She passed away a few years ago, and I miss her spunk! And then there was Brenda. She had a quiet kindness about her, always had a "smile" in the chat room, no matter how she was feeling. She led the Wednesday night chats for a long time. About 4 years ago now, she missed several chats, which was really not like her. I tried calling the number she had given me awhile before that, but I always got an answering machine. Finally, per the suggestion of another phriend, I did some investigating on the White Pages, and found a neighbor's number. The gentleman at the other end was very kind, but also very sad to tell me that Brenda had passed away a few weeks before. I was so sad to hear that she was gone, too. I wanted to continue her Wednesday night tradition, so I asked if I could host her chats, which I continue to do to this day. 

So today I'm especially remembering these two ladies who made me feel so welcome in the PH community via the chat rooms. I have an unfortunately huge list of phriends who have gone before Tanya and Brenda, and ever since then, and I will always remember them as well. But Tanya and Brenda were the welcoming committee to the beginning of my online PH journey, and I just can't ever forget them.