Friday, April 4, 2014

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

Wednesday, March 26, 2014

Nutrition Month

It’s no secret that diet is a very tricky balance to figure out following diagnosis. Patients are often told to eat low-sodium and try to maintain a healthy body weight. However, a lot of factors play into being able to adopt and maintain a proper diet. Integrating new dietary restrictions requires knowledge of what one can and cannot eat, along with the ability to prepare these foods (which can be difficult when dealing with the symptoms of PH).

March is National Nutrition Month, so it’s time to renew your New Year’s Resolution to eat healthier! To help alleviate some of the confusion, here is a short guide on nutrition when living with PH and the foods you should be looking out for (both good and bad):

Low Sodium: The guideline that is probably most emphasized to patients is adherence to a low sodium diet. Limiting table and seasoning salts, avoiding processed meat products (including those that are smoked, cured, salted and canned), and avoiding fast food are all ways to reduce sodium in your diet. Sodium is found in most packaged food, so be careful to read labels and pay attention to the brand: different brands may have different sodium levels despite being the same type of food.

Dairy, Meat and Fats:  In terms of dairy and meat, less is always more. Processed meats are usually high in sodium and carry other health concerns as well. Try to stick with leaner meats, like chicken breast, fish, lean beef, and pork chops. Limit foods that contain saturated fats and cholesterol. Good fats include olive and coconut oils, nuts and seeds, avocado and some fish. Foods labeled “low-fat” tend to actually be higher in sugar and salt, so take that into consideration when choosing foods.

Fresh Foods and Fiber: You should aim to fill half of your plate with plant-based foods at every meal. Fresh veggies are best, but frozen is good too! March is also Frozen Food Month, so you may find lots of sales on frozen produce at the grocery store this month. Stock up!
Try to avoid the canned varieties of vegetables, as they are higher in sodium. Whole grains, brans, fruits and vegetables are high in fiber and vegetables can be high in protein, so these are wonderful foods to incorporate into your meals.

What are some of your favorite healthy dishes to make? Share in the comments below!

Written by Kimberly Smith, PHA Intern

Wednesday, February 26, 2014

Rare Disease Day 2014




Across North America and Europe more than 60 million patients have been diagnosed with one or more of the 6000+ "rare" diseases. If you were to broaden the inquiry to encompass the world you would need to add millions more. Almost every patient has family or friends that help them. I think it would be safe to say that worldwide, more than 1 billion people are affected by rare diseases!! That is staggering to think about! About half of those affected are children.
 
So what exactly is a rare disease? In the European Union, a rare disease is one affecting fewer than 1 in 2000 patients. In the United States, it is defined as affecting fewer than 200,000 Americans at any given time.

Symptoms vary, not just between diseases, but also largely from patient to patient with the same diagnosis. 80% of rare diseases have identified genetic origins. The remaining 20% result from infections (both viral and bacterial), allergies and environment, and most are degenerative and proliferate.
Misdiagnosis is a major problem for rare diseases, often because a common symptom will hide the underlying disease.  In Pulmonary Hypertension patients, we are often diagnosed early on as having asthma, or COPD. Lupus patients are frequently thought to have the flu in the early stages of diagnosis, or simply an allergy.

What is Rare Disease Day? Rare Disease Day began in Europe in 2008, coordinated by EURODIS on the international level, and National Alliances and Patient Organizations (“umbrella organizations that regroup several rare disease organizations in a given country or region”) on a regional level. The goal for the campaign is to raise awareness, mainly in the general public, about the impact of rare diseases. Last year, in 2013, more than 70 countries participated, with more expected this year. This year’s objective is “for WHO (World Health Organization) to recognize the last day of February as the official Rare Disease Day and raise increasing awareness for Rare Diseases worldwide.” 

Join Together for Better Care! Caring for those living with a rare disease is multi-faceted, requiring medication, physical assistance or equipment, medical consult, physical therapy, social services, respite for the family, and more. Worldwide there is a broad lack of scientific knowledge and quality information on rare diseases, resulting in delayed diagnosis, along with increased financial and social burdens.
Because of the increased awareness created by campaigns like Rare Disease Day things have gotten, and can continue to get, better! Awareness of rare diseases has allowed the implementation of more comprehensive approach to care. Better public health policies have been developed across the world. Cooperation in clinical and scientific research and an international sharing of scientific knowledge on all rare diseases has led to the development of new diagnostic and therapeutic procedures!
Now, how can you get involved? There are several ways YOU can get involved, and increase awareness… without even leaving your desk!

            Become a Friend- www.rarediseaseday.org/become-a-friend/
Patient organizations, health care professionals, drug developers, public authorities, and any association with an interest in rare diseases are encouraged to become Friends of Rare Disease Day! Just fill out the form, and join the network!
            Raise and Join Hands- www.rarediseaseday.org/join-your-hands/
Raise your hands in a symbolic gesture before The Day to show your solidarity with rare disease patients, take a picture, and upload it to the site!
            Tell Your Story- www.rarediseaseday.org/tell-your-story/
Tell us how your life has been affected by a rare disease, share words of encouragement, or an uplifting story.
Social Media-
            Facebook- www.facebook.com/rarediseaseday
            Twitter- www.twitter.com/rarediseaseday
            YouTube- www.youtube.com/rarediseaseday
            Flicker- www.flicker.com/rarediseaseday
                                    Wait… what’s that?!
Share a single message (In this case “Today is #RareDisease Day, the day to put rare diseases in the spotlit! Show your solidarity today http://thndr.it/1fkAYmz”) simultaneously in one THUNDERCLAP of awareness!
Want to learn more? Go to www.rarediseaseday.org for more information on Rare Disease Day, for a list of sponsors, and to become involved.

Friday, February 21, 2014

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.

Thursday, January 30, 2014

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

Monday, January 20, 2014

Carson's Journey with PH+



    Carson Smith was diagnosed with Pulmonary Hypertension (PH) and Pulmonary Veno-Occlusive Disease (PVOD ) her freshman year of high school and has not let the disease slow her down. She is currently enrolled in a Masters of Public Health degree program.  Upon graduating this will be her second Master’s degree.
   
    Since we last heard from Carson in her “PHA Journey’s” article, she has faced a number of great achievements, difficulties, and eye-opening experiences, all allowing her to grow as an individual.
   
    In 2009, Carson graduated from Washington University with a degree in Anthropology. She worked for a year and used this time to adjust to her limits. During this time she was faced with the stress of having her files transferred from a children’s, to adult hospital, and meeting with new doctors who were not aware of her medical history.  Being a natural born athlete however, physical activity helped her cope. Soon, Carson was alerted that she was no longer considered sick enough to remain on the lung transplant list. The news left her with bittersweet feelings. While there was a breath of relief to know she was healthy enough to be kept off of the list, it also left her with a lack of security. Carson had already experienced the process of being added to the transplant list. With this background she knew that if one day she did need a transplant, she would have to go through the strenuous process of getting back on the list, and waiting for a donor.
  
  In August of 2010, Carson enrolled in Morehead State University in Kentucky where she pursued a Master’s degree in Public Administration.  By December of 2010, she found herself being rushed to an emergency room and later airlifted to a hospital in St. Louis. Doctors had discovered an accumulation of fluid in Carson’s lungs, leaving her sedated for 6 days and in the hospital for a total of ten. Carson had always considered herself lucky because she did not experience a lot of the things other PH patients did. She was never reliant on oxygen, and was always able to take oral medication. Upon being discharged from the hospital, Carson realized once again that while she was not on oxygen, and was able to continue in certain physical activity, she still suffered from a severely dangerous disease. Even with this setback, she graduated in 2012 and enrolled in a Master’s in Public Health program in August of 2012.

   While faced with the complications of living with a chronic disease, Carson has sustained a positive attitude, and has learned to appreciate the little things in life. She has maintained an attitude of resilience, and believes it is a trait that all PH patients should adopt. She states “it is so much better to try and have to quit, than to not try at all. You have to continue to fight, and use your support network.” For doctors, Carson believes you should “allow patients to test things.”

Kullie's Journey with PH+ (as told by her daughter, Lakesha)



“Continue to fight and educate, get involved and make life comfortable.”

Kullie Sanders was diagnosed with Pulmonary Hypertension and Pulmonary Veno-Occlusive Disease (PVOD) in November of 2010. Her journey was one of determination and fight.

    In efforts to cure through surgery what doctors thought to be a pulmonary embolism, Kullie Sanders and her daughter, Lakesha Jones were flown out to California by the University of California Hospital and flight for life. After 10 minutes of surgery, the doctor approached Lakesha, explaining that her mother had something much more serious than a pulmonary embolism. Kullie was now diagnosed with PH and PVOD. The doctor went on to explain that he would be surprised if Kullie survived another month.

    In the months succeeding surgery, Kullie faced a number of challenges. Having been such an active individual who was so full of life, and often worked multiple jobs, it was difficult to adjust to becoming so short of breath so quickly. The disease had essentially stopped her life. Kullie was now on 22 liters of Oxygen and had trouble breathing after taking only two steps. She was now dependent on a wheelchair, and needed transportation to be mobile.

    Although Kullie was faced with these challenges, she did not give up her fight. She had a strong determination, so strong that her doctor stated “I have never seen a patient fight so hard.” With the progression of her disease, it was now an accomplishment to take four steps without becoming short of breath, or to be able to get dressed on her own. One of Kullie’s biggest accomplishments took place at Church one Mother’s Day morning. She stood out of her wheelchair for a prolonged period, singing and clapping her hands along to the music.

    Throughout her fight, Kullie found an extreme amount of strength and support from her family. Although she was facing a life threatening disease, her biggest concern was always her children, and six grandchildren. They kept her going and fighting, she always wanted to make sure that before anything, they were okay.

    On May 21st 2011 Kullie Sanders lost her fight with PH and PVOD. Through her battle, she continued to keep her faith in God, and determination to keep fighting. Her daughter, Lakesha shares, “The most frustrating part of this experience was to find out that there is a PVOD specialist right here in Colorado after being sent to California. Make sure you talk to doctors and find out information. I think we put a lot of trust into doctors, but we need to make sure doctors are giving us the best care. Continue to fight and educate, get involved, and make life comfortable.”