Raising Awareness By Walking With Straws

November is PH Awareness month! All around the country and the world, there have been events of all sorts to try to promote awareness of pulmonary hypertension, and to raise funds to go towards research and hopefully a cure one day. Here in Western NY, there was a first-ever fundraiser done by Emily, the daughter of a PH support group member that I run (his name is Scott), and the student athletic committee at the college she attends. It was a 6 minute walk marathon, which is just one of the many tests a PH patient usually does when seeing their PH specialist. It's a baseline test used to see how far a patient can walk in just 6 minutes. It can be done with or without oxygen, and a patient can stop if they need to during the walk, but the timer will still tick if they do.

The 6 minute walk marathon fundraiser required participants to use straws. Why straws? Well, trying to walk breathing only through a straw simulates exactly how a PH patient feels on a daily basis. The shortness of breath felt trying to breath through a straw while walking hopefully gives a person a sense of how a PH patient feels trying to get dressed, or walk up a flight of stairs, or down a short hallway. The walkers had a choice in straws: a short straw, a long one, or a skinny straw. Each had a different degree of difficulty, with the shortest straw being the easiest, and the skinny straw being the hardest.

All the participants registered to do the walk, totalling a little over 100 people. The huge majority of people were athletic students, including almost the entire baseball team! After a wonderful welcome and introduction as to the purpose of the PH walk, everyone went outside and began the marathon. The path of the 6 minute walk was around the student center, near the library, and back to the student center. There were PH facts along the entire path. There was a timer counting down the minutes, and paramedics on stand-by just in case breathing through a straw caused a medical issue for someone! Everyone did well, though, including myself and one other PH patient who had attended!

After the walk, everyone gathered for pizza and drinks, and a little more money was raised by selling tickets for several raffle and door prizes. Eventually I joined Emily on the stage, and thanked the crowd for coming and experiencing what it felt like to have PH, if only for a few minutes. The raffles were given away, and soon the crowd had thinned out. While the event was short and sweet, I hope that it served it's purpose, which was to raise awareness of this disease. I do know that at least the athletes at the school are aware of it now! Hopefully another walk in the future can be planned, and perhaps be a bit bigger and involve more of the community!

Side note: Emily and I, as well as a couple other athletes, were filmed for one of the local news stations a couple days before the walk. We each were asked questions about the walk, why we were doing it, etc. I did share some of what I go through living with PH. Three different segments were aired in the early morning hours the day before the fundraiser. I did learn the next day that a few people had written in about the segments, either concerned because they thought they might have PH, or they have had PH for a long time and didn't know there was a support group in the area. I have reached out to these people since, and I'm just glad that a brief amount of TV airtime at least helped a few people!! 

Making A Difference

Making A Difference Day is Saturday, October 25th. This nationwide day of community service began 20 years ago by USA Weekend Magazine, in collaboration with Points of Light. It is a day when just about anyone can go out and do something to help someone else! Clean up a park. Volunteer at a homeless shelter. Visit an elderly neighbor. So many options are out there to do something meaningful for another person. Of course, this is something that should be done daily, but at least there is one day people can share how they've helped a fellow human being.

When the the topic of making a difference was brought up for the PH Plus blog, I immediately thought of something entirely different that I could write about. I must start, however, with a very brief summary of my PH journey for those out there who do not know it. I was born with a congenital heart defect, and by the time it was discovered at 9 months old, I had already developed PAH. So this disease has been my entire life, 39 years of it so far! I was always short of breath growing up, had a blue tinge most of the time on my lips, fingers and toes, and napping was my middle name. At school I was not allowed to take gym or play sports, so when my classmates when to gym, I would help the 1st grade teacher. It was then that I figured out I wanted to become a teacher! Fast forward to years later when I received a Bachelors degree in Elementary Education. I eventually started teaching in a preschool classroom, which I totally loved! I thought I'd be doing it for a very long time....until those adorable little kids started giving me way too many of their germs. By my third year, and my third major respiratory illness, my primary doctor told me to quit teaching. It was a heartbreaking thing for her to do, and for me to hear, but I was 24 at the time and never thought of quitting a job. So, all of a sudden, I didn't have a purpose. At least, that is how I felt. What was I going to do now that my dream of teaching was pretty much down the tubes??

Enter a phone call from Accredo, one of the specialty pharmacies that supplies PAH medications and support to patients living with pulmonary hypertension. I wasn't really new with Accredo, having been on Tracleer for a couple years since seeing a PH specialist after quitting my job. But I was newly introduced to the idea of starting a support group in my area. It was really overwhelming to me, to be a leader of a group. And a bit terrifying, if I'm going to be honest! I was not a large crowd, people person. I had mostly been a shy person growing up, and even though I broke out of my shell a bit since leaving college, I still was really NOT fond of talking to a group of adults. Kids? Sure! Just not the grown ups!! I told the Accredo advocate that I would definitely have to really think about it. She said that was ok, and to let her know what I thought in a week or two.

I spent about a week talking to my family and friends about the possibility of leading a support group. I prayed about it a lot, wondering what I should do. I mostly was worried about being in front of people, but a part of me thought, come on, just try it. So after a week, I called the Accredo rep back and told her I'd like to try running a support group! It was then that she also got me in touch with the PH Association, and the plans were in the works to find a place to have the first meeting and ways to reach out to those in the area who might like to attend.

My first meeting was in October 2005. I had a small group of people attending, and I was beyond nervous! All I did, though, was introduce myself and share my PH journey. I asked others to share their stories as well, and before I knew it, the 2.5 hours were up! The first meeting was such a success, and everyone thanked me for gathering people together to discuss this illness.They were all in the same boat as me, and none of them knew there were others out there like them, too. I went home and cried a little from happiness, and knowing that I was able to help others!! And then I took a much needed nap!!

In the years since I began a PH support group, I have become more involved in the PH community online as well. I host 2 of the online chats a week, and I am a PH mentor. I also belong to many PH-related groups on Facebook. I try to help anyone who has been diagnosed, including the random calls I get once in awhile from someone who happened to find me online. I was so worried when I had to quit teaching that I would not have a purpose anymore, and yet, I do. I have found my purpose! My "classroom" was not as I imagined it would be, confined to a room with 4 walls. Instead, it's everywhere I can help someone, and educate about this disease!

I am making a difference. I am helping others diagnosed with PH in so many ways. I get thank yous every single time a meeting is over and people start going home. I have gotten emails from totally scared and newly diagnosed patients thanking me for taking the time to respond to their copious amount of questions. I think people who return to chat often means in some way, I've made a difference in their life by being so welcoming and trying to understand and listen to their concerns. In turn, being a support to people has also helped make a huge difference in my life. I don't feel so lost anymore, especially when I've helped a person find answers and I've possibly calmed their fears. I don't feel so alone.

In the spirit of Make a Difference Day, I share my story with many of my phriends who may have lost their purpose since their diagnosis. It is not impossible to find a new story, a new way to help others, even if they don't have PH. There are so many ways to make a difference in a person's life. It just takes a little time to figure out how.

Summertime Survival!

Bright sunshine.

Hot days.

Warm nights.

Humidity.

Pool time, air conditioning!!

It's summertime around the United States, which means a whole other way of surviving everyday life due to the weather outside. Much like dealing with the winter weather, many PHers need to take precautions and make adjustments to make sure they can get through the summer months with no problems. Once again I have asked fellow phriends (friends with PH!) to provide some survival tips for the summer. Here are their ideas! Many thanks to everyone who participated in this blog post!!

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*Kevin B: Well anything I could offer would be obvious...like getting up early to get my yard work done or waiting until late evening etc...living in A/C and going from A/C to A/C lol although it's pretty nice down here in Terre Haute right now.

*Jen C: On the Texas Gulf Coast, I stay in the AC most of the summer, try to do errands early if I can, and take frequent AC breaks if I am out for any period of time! Cool pool helps me cool off when I can and drinking cold liquids! Also dress light lol

*Pat F: I want to continue walking as I did in pulm. rehab. I can do it on a treadmill...but I really like to walk for 30 minutes or so walking around Wegmans or Target. Both stores are clean, air conditioned..FLAT! I stop when I need to, pick up anything I need, or nothing at all. They both have clean restrooms. LOL (for those on diuretics) I can go to Kohls, but their carts are terrible, aisles are narrow...but it is clean and friendly.

*Anna A: Stay hydrated, I know we are limited on liquids, but we still have to make sure we don't pass out from the heat. We all keep our meds with us when we leave or we should and they should be kept in a cool spot, I like to have a mini ice chest in my car. Try to stay in shady areas, we can't be in the sun too long because of the type of medications we are on. If we are going for a walk, tell someone, just in case you don't make it back. Try not to talk and walk, we could lose our breath and pass out.

*Tiffany G: A/C and plenty of ice water.

*Guy M: Beer and some shade (I like how Guy thinks! lol)

*Alex F: Carry water with you wherever you go. Don't over exert in humidity, knocks me down for days! Go inside when too hot. Look at weather report. If it's bad for eldery or allergy sufferers, it's bad for us too.

*Vernon G: When it's too hot I stay in the AC.

*Patty F: South Jersey here...wear loose clothing and if you use liquid oxygen, take an extra tank to allow for evaporation in the humidity.

*Catalina L: I'm out and about a lot on buses and that means waiting at bus stops on HOT days. I take umbrella, frozen water bottle, the cooling rag that my PHriend Bonnie sent me, sunglasses. And in between I will go into cool A/C stores just to look around until I cool off. Then I come home and take everything off and relax in my own A/C cool home.

*Lisa T: As everyone else said, to keep hydrated. I know myself being on water pills I can get dehydrated easily. Also to keep cool. Not to eat anything heavy.

*Janet P: I love being outside...and I don't have anyone who needs me at home, nor much to do during the day other than housework. So I can be out in the heat and recover when my body gets too hot. I hydrate, use the AC when it gets way too hot or muggy.

*Cathy M: I use ac all the time because of the humidity. Being on the ocean we tend to have high humidity, as in 90%, most of the time.

*Jennifer K: Coming from Florida, summertime means bad storms in the afternoons and the potential for tornadoes and hurricanes. We, as PAH patients, should always be ready in case of emergency but when you add those pesky little natural disasters, we have to be even more diligent! Extra back-up supplies, generators in case you lose power, knowledge of where the closest "special needs" shelter is, phone lists including your Specialty pharmacy number, oxygen company number, etc...Extra cash! AND having a designated spot to meet at if you can't go home, and a previously planned place to stay in case your home is not livable...Anyone else from the coast want to add anything? Oh yeah, homeowners insurance!!

*Susan T: I hate air-conditioning because it freezes me, and I hate humid heat because it zaps me. It's not too bad at my house because I can keep the AC where it is comfortable for me. When I go to other places, though, I have to make sure I have a jacket or sweater for inside. Sometimes I still get too cold and have to go outside in the heat for awhile to get warm and then go back inside. I keep an afghan at my church because it is always too cold for me - summer and winter.

*Evelyn C: Go to the water, beach or pool with the highest sun block. Maintain in the water to refresh your body from the heat. Bring some cookies and cakes with lots of drinks of all kinds.

*Mary W: I get up early and do all my outside work early in the morning or late in the evening.

*Deborah W: Popsicles, ice cream, water (lots of water) and a/c. When it is too hot to go out during the day, I make it a point to sit on the patio in the evenings when it cools off some.

*Pat K: I use flexible ice packs. I take them with me in a small insulated nylon cooler with a bandana and apply to neck when I feel myself becoming overheated. Also in addition to sun block (apply often when you're outside), I take a large golf umbrella for daytime outdoor concerts, picnics, etc.

*Joellen B: Do your running around in the morning or evening to avoid the hottest part of the day. Also ask for help with some stuff that is too hard to do!!

*Regan S: I'm in the Mojave where it's regularly in the hundred and teens in the summer. I like to suck on ice cubes. Since I have to limit my water intake, sucking on ice makes my water allowance last longer! I take cool showers in the middle of the day. I exercise early, like 6am. I have a special car seat cover that holds ice packs to keep the car seat cool while I'm shopping. I carry a small misting bottle and tiny hand held fan in purse. I wear minimal clothing when it's hot and I'm at home. I just have to remember not to answer the door in my underwear...lol I keep a beach umbrella in my car, too.

*Pam M: Stay in the house during the hottest time of the day! A/C, fans, lots of H2O.

*Tammy D: Keep hydrated.

*Kathy B: Stay hydrated. Drink water and avoid caffeinated drinks as they dehydrate the body. Pace yourself in the heat. Don't try to do everything in one day, spread the chores/errands out through the week. Do a check on each other, we do that here anyway, but if you live by phamily, check up with each other. Help each other out. Be careful of aerosol bug spray. It messes up the lungs. Use lotions, no aerosols.

*Lynne C: I love Outshine Fruit Bars...25 calories and 0 sodium. Very refreshing.

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If you have any summer survival tips of your own, please post in the comments below!

National Poetry Month!

April is National Poetry Month! Poetry is a great way to express every emotion a person is feeling or has dealt with for any type of situation. Whether it be a poem about falling in love, describing nature's beauty, or how hard it is to deal with the death of a loved one, poetry can be a therapeutic and creative way of expressing oneself.

In this blog are a few poems by some phriends who were willing to share their words about living with pulmonary hypertension. I can certainly relate to their creative expression. Can you?

The Dastardly Disease ~ by Merle R. November 2010

I used to be healthy; I used to be strong,
I used to work most all the day long.
And then it hit me without even a clue
I wasn't quite sure just what I could do.
I saw many doctors and then all those tests
I was diagnosed with IPAH and you know the rest.

Pulmonary Hypertension the dastardly disease
It’s rare with no cure and progression will be
It affects the right side of heart – the lungs big time too
Those arteries get constricted and give out on you.
It’s so complicated; makes it so hard to breathe
With having this dastardly pulmonary hypertension disease.

Shortness of breath are symptoms at first
And sometimes it feels like your heart just may burst.
That weight in your chest, fast heart beats oh my
And walking too fast may just make you cry.

Some may get dizzy, or maybe pass out
Some are so tired - what’s that all about?
Some cannot work and don’t understand why
With little exertion they falter not fly.

Some have edema, that swelling so bad
Retaining that fluid just makes one so sad
Some may have chest pain and may have blue lips
This disease is too serious and needs to be nipped.

Some may have Scleroderma, Sleep Apnea or HIV
Lupus, Raynaud’s Phenomenon or maybe COPD.
There can be some causes or no cause at all
That’s when our ph doctors need to make the right call.

We cut back on salt, smaller portions for meals,
Nutrition’s important and helps us to deal,
We deal with life changes a whole new life style
Remember it’s doable – we'll be here awhile.

Many will ask when not feeling too well
How do I cope, how do I dwell?
Do not despair and let me just say
There are treatments out now – with more on the way
With hope and with faith we have a good chance,
To fight this disease and maybe then dance.

Too many doctors; some specialist too
Do not understand what this ph disease can do
Luckily though and I praise God on high
There are ph doctors and nurses who do know the why
They treat us with wisdom and caring that shows
I thank them so much and I just hope they know.

They schedule those testings they start off real slow
An echo and blood work and others you know
A six minute walk, many PFT’s, oh gee
We scurry, we’re dazzled, we come then they see.

You may have a CAT scan, a bron-chos-co-py too
And there could be several others they may ask of you.
And then the right heart cath the gold standard of all
This proves the diagnosis is proper – they made the right call.

Some take an oral an inhaled or such
Some with IV’s and more, oh, oh so much.
Revatio, Adcirca, Letaris, Tracleer,
Ventavis, Tyvaso are a few that are here.
Then Veletri, Remodulin or Flolan may do
And some of these meds are almost brand new.

A hose in the nose; a tube in the chest
We struggle; we strive and hope for the best.
It is very doable this dastardly disease
With research abounding, there’s hope – so let’s breathe

Those researchers out there, those researching now
How can we help you, with what and the how
We’re counting on you to brighten our life
You give us more hope to end all this strife.
We’ll give you some blood or whatever you need
And hope for a cure of this dastardly disease.

The cost of these meds is abhorrently high,
We suffer, we struggle, oh my how we sigh.
Some insurance companies won’t give us a dime
The government too in their wisdom declines
Then say they will help – but they have special rules
Most are careless and thoughtless and actually cruel.

There are specialty pharmacies and pharma reps too
With guided persistence they know what to do,
They tell all those doctors those specialists out there
About the ph meds; how they need treated with care.
Some have special nurses and advocates now
Who teach the new patients the why, what and how.
They treat us so special it’s learning one on one
They do have support for us, their work’s never done.

There’s a ph community it spreads far and wide
We meet in some chat rooms and support groups with pride.
I've made many phriends and I value them well
Unfortunately though, and I do have to tell
I've lost ooh too many, that hurts thru and thru
This dastardly disease can do that to you.

With our phamily support system we’re able to cope
We share with each other, there is always hope.
Hope for a future, hope for a life
Hope we’ll endure without too much strife

Although it’s not cancer the symptoms may be
As bad, sometimes worse than that horrid disease.
PH is progressive and can cause us much pain
We must not let fear grip us, there’s still much to gain
As mentioned before and remember this now
Pulmonary Hypertension is doable – we’ll be here a while.

Let’s take a deep breath; so slow if you please
It can strengthen those lungs with this dastardly disease
In through your nose and out through your lips
Slow is the key – please remember that tip.

And last but not least, remember to smile
As smiles are contagious you see
And when you feel down; and bring on a frown
Turn that frown upside down just for me
Smiles make us happy and will help us cope
With having this dastardly pulmonary hypertension disease. :o)

PH Poem ~ by Catalina L. 2006

~To all of us who are dealing with this terrible disease, may there soon be a cure~

You came into  our lives when we least expected it.

Because of you we are weak.

Sometimes unable to speak.

You are such a threat. 

Our hearts throb and we even sigh.

But it doesn't mean we love you!

We are just trying to catch up with our breath.

We think of  you night and day.

We wish you would go away.

We're stuck with you no matter what.

If you only knew the pain you have brought

You're not innocent or pure.

And right now there is no cure.

But we will not give up hope you see.

One day a cure there will be.

Just as easy as you came into our lives.

You will always come

But will not stay.

And we all hope and pray for that day!

"Breathe" ~ by Laura G., September 2013

Pumped full of life and this is true

The only breaths I have are few

The medicine runs through my viens

The best days I have are when it rains

If it's too cold outside my lungs are tight

If it's hot they just dont feel right 

It's so scary when you lose your breath

I just wonder how many these lungs have left

I'm few of the lucky ones who can walk around

Without an airtank dragging them down

I'm still really lucky if I haven't already mentioned

But it really sucks to have pulmonary hypertension

Living With A Holey Heart And PH

As a child, I thought that being short of breath after running around with my sistores (an affectionate term my sisters and I call each other) was normal. I thought being exhausted and always needing naps was just part of my day. I thought having blue lips and fingernails made me different. I thought sometimes feeling dizzy once in awhile wasn't a terrible thing. I also thought all of these things were just a part of living with a heart that was special, because it had two holes. I thought this was normal. I thought this was MY normal. Little did I know there were other people out there who were experiencing much of the same thing.

When I was nine months old, after several months of trying to figure out if there was something wrong with me, my parents were told that I had a congenital heart defect known as atrioventricular canal (AV Canal) and pulmonary hypertension. They were also told I might not make it to my first birthday, or I might not make it past the age of 50. What they were told, basically, was to take me home and love me the best they could. And so that is exactly what they did.

I only really understood the fact that my heart had a problem, that it had two holes in it, and they were never fixed. I knew that my heart kept me from playing in gym class and participating in sports. I did run around the neighborhood as a child, but always had to rest for long periods of time afterward. I knew my heart was the reason. And while sometimes it was frustrating to deal with, it was something I became accustomed to, and eventually it just felt like MY normal.

While there were many things I was not able to do, I never felt totally left out. My mom found things that I could possibly try. I did try dance lessons, but that only lasted a class or two before she realized it wasn't something I could handle. But I took organ lessons and art classes. I spent years in chorus in grade school. I was a Girl Scout for several years. I was part of the yearbook in high school, and I even became part of the girls' softball team as a scorekeeper. The one activity I remember the most, though, was volunteering in the 1st grade class when my classmates went to gym while in middle school. It was then that I knew I wanted to become a teacher, a goal that never left me even in high school when many teens don't even know what they want to be after graduation.

Going to college was a challenge for me. Not academically, mind you. I did pretty well with my courses, and made the Dean's List many times. What was hard for me was navigating around the beautiful campus, walking from building to building in sometimes very cold weather and high winds. I will never forget getting into a building and going immediately into the bathroom to hide in a stall in order for me to catch my breath. Sometimes it took several minutes before I could continue to the classroom. I remember feeling like my head might explode, and my ears would ring so badly from the exhaustion that I almost couldn't hear. Finally, when my heart started to regulate and I could breathe better, I felt so tired. There were many times I felt like falling asleep in class, not because it was boring, but because just getting to the class was so tiring! I still drive through the campus all the time today, and wonder how I ever survived four years there!

After graduation, I began my teaching career. I went from subbing to teaching at a daycare to teaching preschool for Headstart within a few months after getting my degree. I only lasted a few years (not even) with teaching. Many factors were against me in the environment I was working in: the building had many staircases, and my classroom was on the second floor and I had to climb the stairs from the basement to the 2nd floor at least 5 times a day, and the preschool age children were pretty tiring after spending a day with them! The biggest hurdle was trying to combat the germs. Let's face it, little kids are germ factories! No matter how many times they are told to keep sneezes to themselves, to wash their hands, etc, it didn't matter. By my third year of teaching and my third major respiratory illness, I was told to quit my job. I was 24. It never occurred to me to end my career at that age. I felt defeated. I was upset that my heart and my health could not keep up with something I wanted to do since I was a youngster myself.

Even after leaving Headstart, my health didn't quite get better. I started to feel more chest pressure, like something was sitting on me and I couldn't get rid of it. I was even more short of breath than ever, and more tired than before. I went to my pediatric cardiologist, the one I'd been seeing forever, and he put me on asthma meds that never helped. I eventually talked to my primary doctor about my symptoms, and she referred me to the Cleveland Clinic in Ohio for a transplant evaluation. I was petrified of going. I couldn't believe it was coming down to this. My mom had mentioned every once in awhile what would I do if I were told I'd need a new heart. I think most of the time I was too young and naive to understand that it could become a real option. Now I was facing it, and very scared of that possibility!

Appointment time came, and I did all sorts of tests: xrays, pulmonary function tests, 6 minute walk, arterial blood gas, CT scan, echo. It was a long couple of days, that's for sure! I saw a pediatric cardiologist despite being 25, and a pulmonologist. Oxygen was discussed, something I had already been using at night only, and I was told to start using it all the time. That was devastating. I cried all the way home after that. Transplantation was not on the table yet, but I was to go back to Cleveland in another three months to repeat many of the same tests. After going back a few times, I heard pulmonary hypertension being discussed more and more. I knew I had that, but I sure didn't understand what it meant. I always thought  my heart was the huge issue when it came to my health. Honestly, it wasn't until my first shipment of PH medications and a flyer from the PH Association with their website that I first began to learn more about PH and exactly what it entailed.

I spent a week reading the PH message boards and crying. I had found a community of people living with MY normal. Except, it really wasn't a normal way to live. I learned that it wasn't really normal to gasp for breath after trying to exercise. I found out it wasn't normal to be exhausted after making the bed. It wasn't normal to have purple nails or lips. I discovered that what I thought was normal for me my entire life was truly not the way it was supposed to be! What I discovered were what I would eventually call as phriends. People who had PH for one reason or another, and who had the many of the same symptoms and feelings as I had growing up.

As if finding this rare community of people wasn't enough, in the next several years I also discovered that the reason for my PH, my congenital heart defect, was also a part of another community: adults with congenital heart disease. And, breaking down my condition even further, I have what is known as Eisenmenger's Syndrome (ES). I eventually learned this along the way the more I was going to Cleveland Clinic. It's an even tinier group than PH, and I only know a very small group of people who are living with ES, as well as pretty limited information about the condition. Regardless, it was amazing to find anyone who could relate to how I'd felt my entire life!

In the last almost 14 years since I had to quit my teaching job, my health has been much better. Yes, I still have some bad days where I can't seem to do much of anything besides waking up, but they are few and far between. Yes, I still get short of breath, but my recovery time from the things that make me exhausted is much less than it was when I was a child. While I'm not running marathons, I am able to exercise several times a week, a far cry from when I was young and not allowed to do much of anything physical! And while I miss being a teacher, I have come to realize that my "classroom" is not at all what I was expecting. I have been able to educate so many people about PH, and even about congenital heart disease. I've told countless strangers about both diseases when they've approached me about my need for oxygen. I've been running a PH support group in my area for about eight years, helping many people just learning about their diagnosis or finally finding people they could relate with. My online involvement with PHers seems to keep growing, from running two chat sessions a week to being a PHA mentor to friending PHers around the world on Facebook and sharing experiences. I've found my new calling in life, apparently, with the PH community.

After living with PH and congenital for 38 years (so far!), I have found a new normal. I've found MY new normal. I am so thankful that I no longer feel so alone with my condition, and I hope to continue helping other PHers navigate THEIR new normal for years to come.

~Colleen S.

Winter Time Preparedness

It's nearing the end of January, and boy has it been a brutal wintry season already! Blizzards, bitter cold, and something called a "polar vortex" entered into the vocabulary of over half the country in the last several weeks. Places that do not usually see very much in the way of chilling temperatures and feet of snow have been crying uncle!! People are already counting down the days until spring, but honestly, I would just love to see a day above 25 degrees!! I happen to live in an area notorious for dealing with the cold and snow, but that doesn't mean I ever get used to it! In my humble opinion, I would rather be in the middle of summer with hotter temperatures! But that is just me!!

So, how does one with PH deal with the winter weather? I posed this question a couple weeks ago to phriends, and I got some great responses! Since it's still pretty bad out there, and not letting up yet, here is a compilation of their suggestions!

~James: In cold weather, I stay in if I can. I read where I could experience pump problems in extreme cold temps, do not want to tempt fate. But if I have to go out, I run my 02 tubing under my clothes to keep it from freezing, and I bundle up in multiple layers. Also, have the heater in the van warming things up before I get in.

~Alex: For inclement weather, I always keep extra pairs of socks and gloves in my purse starting in October. Keep them in a ziplock so they don't get wet or dirty. Usually wear 2 or 3 pairs of gloves and socks due to Raynauds. Layer on tops and wear tights under pants or jeans. Always scarf up and wear a hat. But with Raynauds so bad, I tend to not go out when weather is bad.

~Rita: The cold here in Montreal has made it impossible for some of us PHers to go outside for more than a few minutes. When I absolutely have to go to an appointment, I wrap a scarf around my face and limit the amount of time (mere minutes) spent walking from public transport to the hospital door. Otherwise, I cab door to door.

~Cindy: I try to pick days to go out that will be the warmest of the week. Otherwise, I just wear coat, gloves, and hat.

~Jenn: I don't go out if I don't need to. If I do need to venture out, I dress as warm as effortlessly possible. Several years ago, I made the decision to stop caring about my appearance in the winter and just bundle the hell up. Leggings, warm pants, double socks, 3 shirts, bulky winter jacket, scarf, mitts, hat, huge winter boots. Even though it's hard to move wearing that many layers, I at least feel like I'm trying to keep warm. (When I see people wearing shoes in the winter I don't understand what they must be thinking - also t-shirts are incomprehensible to me during these months ((unless, of course, it is my first layering of shirt)). lol I do everything I can to try and stay warm. But mostly, I wait for spring.

~Stuart: Well I am probably not one to answer the winter question, but I always keep a blanket and some food in the car and make sure I have plenty of water at home.

~Stacey: I have Raynaud's too, and when I lived in the mountains, I made sure I had a warm hat and kept my core warm. Instead of wearing gloves, I wore special mittens that zipped open at the fingers with very thin gloves inside. Mittens tend to keep hands warmer than gloves. Neck warmer or scarf and ear warmer headband. Sunglasses to block wind. Ski type socks and waterproof boots with plent of good tread. Warmed up the car for several minutes prior to leaving the house and made sure I always had gas in the car. Always had a stash of air activated hand/foot warmers in extreme cases. Thin long underwear under all of my clothes (top and bottom). Hot drinks, salve for under my nose as I always got super dry, good lotion (Aquafor), chapstick, ice scraper with brush...I think that about does it!

~Erin: For winter which I always have, lol, I do soup for lunch regardless because it keeps me warm for the rest of the day and tea is my best friend besides my husband...I hope this helps.

~Bonnie: I get hubby to warm the car and always keep extra gloves in the car.

~Susan: On surviving the winter, here is what I do: 1. Wear Cuddleduds under my regular clothes; 2. wear mostly sweatsuits or warm sweaters; 3. use Hot Hands when needed; 4. use a space heater in my drafty house; 5. wear a coat that's certified for really cold weather; 6. cover my head when I go out.

~Neeta: Winter care: I am fortunate to have a wonderful husband who gives me door to door service. This comes in handy since my shortness of breath does not allow  me to wear heavy clothing to be comfortable and walk even a few feet! However, I will always cover my nostrils with a warm scarf so the air I breath is warm going into the lungs. MN (Minnesota) winters are very harsh. Even for 10' or less of walking to the door, I make sure gloves are on and a something covers my scalp. No long johns...or other heavy clothing in layers. Even my shoes are easy to take off - backless ones since bending to put them back on, is not a joke! I pray that my hubby outlives me so, selfishly, can be cared for him like a Princess!

I happen to follow many of the suggestions provided above in order to deal with the winter months! In the last couple weeks, I have only gone out twice, since the temperatures here have mostly been in the single digits with well negative degree windchills! When I do have to go out, and I'm by myself, I make sure my car is heated (thank you to the person who invented the car starter!!), and I wear layers. I makes sure I have my hat on, hood up over that, and scarf wrapped around my hood and my face. My gloves are on, and I'm ready to go! I also try to carry several days worth of my medications with me in case I get stuck somewhere. But mostly, I try to stay home where it's warm and if I really, really need something, I ask family and friends if they are able to get it for me.

And I also THINK SPRING!!!!

~Written by Colleen Schnell

The Importance of Caregivers

November is an incredibly important month for pulmonary hypertension, since it is the month where so many in the PH community try to spread awareness everywhere possible! But November is also special to many people who have caregivers, because it is Caregiver Awareness Month as well! A caregiver is defined as a family member or paid helper who looks after the care of someone who is sick or disabled, whether that person be an adult, a child, or an elderly person. A caregiver provides emotional and physical support as much as possible, and their helpfulness, thoughtfulness, and caring can be a blessing to the person being cared for. The following comments are from PH patients after they were asked to share what their caregivers mean to them. It is quite obvious that most of the caregivers play a huge roll in providing comfort for the PHer!

Jen C: Great - we all love our caregivers that are blessed to have them ! My hubby Manny (cg) is my rock - always there in good and bad days when it seems like the rest of the world has walked out on me !

Tiffany G: My caregiver (my fiance Mike) loves and accepts me unconditionally. There is nothing that he would not do for me and the PH cause. He takes me to all of my appointments, helps me understand the Doctors, picks up my prescriptions and eats the diet that I choose to make us more healthy. He also holds me when I am sad, crying and frustrated.

Barbara H: My caregiver who is my husband has been with me ever step of the way during this illness, I am so grateful for his kind, loving care, he has done without to make sure I get my medications and whatever I may need to survive.

Kevin B: Joann, my caregiver does everything for me, days I cannot get off the couch she is their, every doctor's appointment she is their, times I am mad at the world she is their to show me the good in my , when I'm ready to give up she helps me carry on. With out Joann I would not have the strength or courage to make it day to day, with out Joann I could not make it through this terrible sickness.

I want to also mention my son Josh who time after time has helped me through troubled times like when I awoke from passing out to find him laying next to me caressing my arm telling me "it's OK dad your OK" or the numerous times he has helped me while I was having a seizure or the times he has explained what PAH is to a doctor and EMS people that were unaware with what it was. To the day to day chores he does because I cannot. Between he and my wife I would never make it without them. I also have to include you folks my PHfamily and friends because you ALL help me even when your not with me because your always in my thoughts!

Kit B: My caregiver/partner has really stepped up at home where I need it. He cooks more, goes shopping for groceries, and tries to help see that I'm able to eat nutritious food even if I'm unable to cook it! In addition to that, he provides emotional support that others cannot. He never questions my struggles -- he accepts them and we work together to try and fix what we can.

Angie E: My caregiver, my husband, has fought for me through thick and thin and has saved my life so many times when there were too many doctors on the case and he was my point person, not taking "no" for an answer. He is always there when I need him even when I scream and yell because I am so tired of trying to breathe! God Bless Our Caregivers!!

Sylvia T: My caregivers, my husband and son, are always there for me, pushing me when I am down...loving me when I am having a hard day...making me laugh. They cook and clean and pay the bills. I always feel the love!

Bonnie H: My hubby, Brian, is my best friend and caregiver. If I can't do something I want to do, he'll figure it out so I can participate and not get left behind. He designed a garden closer to the house so I can grow my tomatoes and beans something I really enjoy. But just being there to make me laugh helps more than anything. I am loved.

Ruby Nan M: Louis, my husband, does every thing I need and never complains! He does the shopping, he does the cooking, cleans the kitchen, does most of the laundry, mixes my veletri, changes my cassette every night, sorts my pills once a month, etc. And he NEVER complains. I am very blessed. He always tries to lighten my load. He's the love of my life and my best friend and he always brings humor into the situation.

James R: My caregiver is my best friend, through thick and thin, she is also my wife. She never complains, and for that reason sometimes I forget I can be a handful to take care of, She is always there, even when I don't need her to be, She is my one true love and has been for close to 24 years now. I cannot imagine doing things without her, much less her not being a part of my life.

Tara S: My Caregiver/Partner Michael has been a blessing in my life. He has taken over so much of the housework (with a little bit of complaining)  but I know how much he loves me. He has to help me shower. He has to help me change my medicine out every two days. He does it all without complaint. He carries the laundry out of the laundry room for me so that I can put it away if I am feeling up to it and if I am not when he gets home he will take care of it. There is nothing that he won't do for. We are waiting right now for the call for Transplant. It is very nerve wracking. He has switched shifts at work to be home with me at night in case we get the call. We have been together for 7 years. I hit the lottery when I found him.

Alice Marie J: My care giver is my husband Dean, he helps me physically, emotionally and spiritually, he is my best friend, when I finally drop of to sleep I wake listening to him reading the bible to me! He is truly truly truly a gift from the Lord!

Shannon W: My best friend Susan. She has been there from the min I found out and has been there physically,emotionally,and spiritually. She took time to learn about PAH and how to help. The are days she has to keep me on my toes cuz I feel so down.

Neeta P: He knows it when I am ill or well. He knows it when I am blue or pink. He will help when the time is right. That is just when I am in need. This one is for all our caregivers. We are so very blessed to have them in our life. He is the only one who understands what I am going through and does whatever is needed to keep me comfortable, feeling better. On my good days, he lets me do what I can, on my bad days, he does it all and more without a peep, always cheerful and smiling, counting his blessings that I am alive and giving him company. Yes! he too reminds me when I forget to take my meds in spite of the alarm. He is the one who carries all the grocery, whether I accompany him or not, he is the one who is my moral, emotional, physical and spiritual support reminding me at the appropriate moments to be positive, to be thankful and to be happy. Its not how many breaths we take but, how many moments of happiness we have together in life that matters! I thank god for my caregiver every day of my life, for this beautiful gift He bestowed on me as my husband!

Stacey G: My hubby is my true partner in life in all ways. He caregives by giving me emotional support through the many ups/downs of having 2 chronic illnesses. He steps in when I can't and takes care of things to make my life easier, tells me I am beautiful despite my oxygen tubing and a line coming out of my chest and never gives me any worry that he won't be here for me when I need him.

Barbara T: I literally would not be on this Earth had my husband & caregiver, Chuck, given up on me. He took me to 14 different doctors prior to a correct diagnosis.

Lorrie T: I could not live w/o my caregiver! Joy has stood by me all along this crazy ride since dx 2 years ago. When I can not take care of me, she always steps in and mixes my meds. She is the most understanding of what we as patients deal with on a daily basis. I love her so much, she can't be replaced!!!!!

Elaine W: My caregiver helps me out in all situations, no matter how big or how small. I couldn't do it without her, she is special and deserves an award!!

Rozanne C: My caregiver is my partner, the love of my life for over 30 years. He is there for me, supporting me through physical, as well as spiritual challenges. And, I love him more each day.

Jennifer S: My caregiver and loving husband is my rock and the best advocate and partner anyone could wish for. I have no idea how it would face all of life's hurdles without him.

Kim F: My caregiver is my husband and he has been my rock for the last 5 years. He gladly took over all the daily house chores that I can no longer do and he waits on me hand and foot. He also learned how to mix my drugs and does that more then I do. I don't know what I would do without him he has been my best friend for over 30 years but in the last 5 has shown what better or worse really means.

Breast Cancer and PH: Similarities In Dealing With Both Ilnesses

How are breast cancer and Pulmonary Arterial Hypertension the same? They continue to be never ending. PAH has its tests, doctors appointments and effects so does breast cancer. Both can have lots of doctors appointments. Both have support for anyone who needs it.  I was lucky to find a local breast cancer support group and a cancer center. My doctor had flyers up  for a local PH run to raise funds for research. Online is another good place for support. PAH has helped me understand and use Twitter. Message boards are a good source to.

Eleven years ago I had early stage breast cancer. I had surgery, radiation and took medicine for five years. That medicine had terrible side effects. The hot flashes and night sweats were so bad it made me question taking the medicine. I took the medicine four years and decided I wanted a good nights sleep. Because I also have Cowden's Syndrome a mutation of my PTEN gene I am at a high risk for recurrence. So I have a mammogram or a breast CT every six months. This week I saw two doctors and had an ultrasound concerning the growth I have in the bra line of the  left breast  radiated field. I am currently waiting for tests results.

PH and breast cancer raise money. I am slowly finding what I can do to help others with PH. I have gotten back into art. Last year I entered a bra in our local theme bra decorating contest.  Women helping women a local group in Medina County help local women fund cancer screenings with a theme bra decorating contest. There is a big fancy dinner. All the bras are on display. Votes cost one dollar. There are six categories this year. Last years winners were really good. The librarians entered Fifty Shades of Pink bra. The ladies who work at the oldest school in Medina entered a bra decorated to look like a brick. It was called she is a brick house. The event raised enough money to help 26 women.

This year I used the global genes theme Hope its in the Genes. Global genes is a support organization for people with rare diseases. I have Cowden's Syndrome. Cowden's Syndrome is a rare disease where the   PTEN gene is mutated. That gives me a high risk for many cancers including breast cancer.   My bra is decorated in denim. I think it turned out really good. Hopefully it makes lots of money. 

*Story written by Tami A.*

Losing Weight While Dealing With PH -Tami's Story

My name is Tami Arnold. I have pulmonary arterial hypertension, right side heart failure, a large painful arteriovenous malformation, and Cowden's Syndrome.  I had early stage breast cancer in 2002 and colon cancer in 2008. I like food, especially ketchup, tomato sauce and chocolate. Sunday evening was date night for me and my husband. That meant Chinese food. It got so bad the staff knew what we want before we told them. I never met an ice cream I didn't like. For a long time I ate way too much so...I gained weight.

I like working out. Exercise class was fun. Having thirty minutes on the treadmill listening to my music is great. The feeling I got completing a personal workout goal was great.  I grew up in an active family.  My dad was a distance runner. We were on the swim team in the summer. Swam during the day. Fall was swim team at the Y and gymnastics after swim practice. As an adult I did exercise classes, worked out and did spinning class with my husband. For along time I didn't see the connection between what you ate, exercise, and how much I weighted. Lots of things helped me put everything together. A big part was when I found out about my PAH and right side heart failure. Over the years my arteriovenous malformation  needed embolismed to help with the pain. In 2007 I had an emblozation. I left the hospital with an upset stomach, shortness of breathe and heart palpitations. Before the end of the week I was back in the hospital. After a two week hospital I had a PAH and right side heart failure diagnoses.

Two thing helped me realize I needed to do something about my weight.  I felt really bad. So bad that when anyone mentioned my weight I didn't care. While recovering I realized I didn't weigh that much when I was pregnant. Who ever thought my weight would be almost 200 pounds. Our health insurance was offering a rebate to anyone who joined Weight Watchers. You had to pay in full, were only allowed to miss three meeting and the insurance company got your results. The rebate made me want to give it a try. After talking to my husband he wanted to join to. That was great. We had support at home.

Because I was working we ended up going to different support meetings. My first  meeting was not bad. You stand in line and step on the scale for a total stranger. I am 5 ft 5. My starting weight was 189. I was upset with my self and grateful no one saw the scale. The lady who saw my starting weight was very encouraging. She told me I didn't have much to lose, then pointed to her before and after picture. The weeks I gained weight because of fluid retention she was understanding.  Every week I got in her line. My first meeting, I was the only newcomer. After telling the instructor about PAH, her first words were follow your doctors advice first. All she knows  is the program. I still follow her words today.

The first couple of weeks were frustrating. Along with counting points I had to look at sodium. Yes we got starter recipes.  We didn't have most of the ingredients in the kitchen. I never liked math let alone counting points and keeping track of what I ate. So I decided to try new things with an open mind. We bought bananas, carrots and any fruit in season on sale in the house to snack on. I tried lots of new things for dinner. Who knew chicken could taste so good. I marinade chicken in mustard and lemon juice. Before 2007 I didn't like any kind of mustard.  I made fish for dinner using just the microwave.  I can make  three kinds of chili, better than my mom. We still have steak. Now we have one steak and split it. Yes there are time I think I'm going to scream if I see another baked potato. But I make great baked steak fries. Fried rice takes time but I getting good at making it.  Because of right side heart failure I don't have much of an appetite, so I started eating only when I was hungry and stopped when I was full. That seemed to work for me. I did not count points.

Because of fluid retention my weight loss was up and down. That made losing weight  very hard and frustrating. My husband Dave lost weight every week. Doing it together helped. Dave learned to cook. If I found a recipe I liked, one of the first things I looked at was the  sodium contain. Who knew ketchup and spaghetti sauce have so much sodium. We now have a kitchen full of spices. It had been a long time since I used the crock pot. The last time I opened the canned soup, added water and put the meat in. Crock pot cooking has come a long way since them. Now a days you brown the meat, add fresh vegetables, spices. No more canned soup. That adds way to much salt. Last Thanksgiving we cooked a small turkey for two in the crock pot. It turned out great and we had leftovers for a couple of days.  Don't get me started on healthy microwave cooking and why I like fish.

I have to do whats best for me when it comes to exercise. Because of  PH, heart failure issues, and  I can not feel the bottoms of my feet an issue left from chemo. After breaking my foot I do things at my pace. The walks might be slower by I'm walking.   In Ohio there are lots of reasons its hard to exercise every day. As the days get shorter I'm only about to go with hubby and the dog on the afternoon walk. Snow and bad weather will make even that walk harder for me.  In bad weather I try to use my environment for more exercise.  If possible I make an extra lap around the store. 

My doctor keeps telling to to focus on what I can do not what I use to do and quit letting pride get in the way. That is really hard for me.  We went to an Indians baseball game this July. Our last row seats were hard for me. Baseball games mean LOTS of walking. The last two flight of steps were straight up. I had to stop twice. My brother saw that. 

I am learning my mom and dad had good ideas about food and exercise. My mom only bought one box of cookies every two weeks. We had one box of sugared cereal every two weeks. That's enjoying something you like while eating healthy. I still eat chocolate and ice cream. Just not every day and in smaller amounts. I like to cook again. Since 2007 I found out fast food isn't fast. What I can make is fast, tastes good and low in salt. I have given up the salt shaker. Found is better with less salt. Exercise is what you make of it. Start small and do something every day. My husband Dave and I have kept our weight off since 2008. Teamwork helps. He loves to cook. I get new food ideas from all kinds of places. On Twitter I found someone who's blog had the best ideas about easy,cheap, low salt homemade pizza. We had pizza for dinner last night. Reward your successes. I like the occasional peanut butter cup. Shopping for a smaller size never gets old. Yes I still look at my skinny reflection whenever I can and smile. My weight today is 153. Tonights dinner is opened back fried chicken made with corn flake crumbs with my baked steak fries and cole slaw.