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Monday, September 1, 2014

The Long Road to Her

By Colleen Brunetti

This blog is probably one of the most raw things I have written to date. It contains thoughts and experiences I had previously chosen to keep private (in fact much of it was written a year ago and never published) - odd for someone like me who has otherwise made a decision to live this diagnosis out loud in an attempt to change its course. But now is the time to share. My prayer for you if you are living some of these same struggles is that you find some hope in our story.
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My journey to her began at age 19. It was the year I took the job as a nanny for a little girl newly adopted from China. I clearly remember rocking her to sleep in my arms, gazing down at that gorgeous perfect little face, and having the wind sucked out of me. What if her parents had not cared enough to go and get her? What if she had stayed in a Chinese orphanage? What hell of a life would she have lived? And here she was, safe in their home, safe in my arms, the world at her feet. I vowed then that I too would make the difference in a little life, and adopt.

I knew the child I got would be a girl... Altruistically speaking, girls have a pretty tough time in much of the world and I wanted to make a difference for one. Totally selfishly, I wanted to raise a ballet dancer, like me, someone to share that with (for as long as she would tolerate it before asserting independence, of course!)

Eight years ago I had another brush with adoption that only further solidified these feelings. I was teaching special education and I had twin girls from India on my case load. They were the result of a botched late-term abortion and had survived, eventually being adopted by an American couple. Again, I found myself looking at them and thinking, "What if..."

Fast forward many years, and I have an incredible biological son. A son who is my own miracle - as we now know I shouldn't have survived the pregnancy because I probably had PH already, and we just didn't know it.

When you have PH you can't get pregnant. Or, at least, you really really shouldn't. This is something you're told pretty much upon diagnosis. When I was told, it didn't faze me. My son was an infant at the time, and pregnancy was not something I was too big of a fan of the first time around. Since I already knew I wanted to adopt, I figured that would be our route, and that was totally cool.

Except, for a long time it wasn't our route at all. I was so busy chasing a toddler and trying to get better and trying to be self-employed, and my husband always works so hard, and our lives were just full. Although we batted the idea of adoption around many times, the answer always seemed to be "Not now." And that was fine.

But then a little over a year ago my damn biological clock started ticking...and chiming... and the gong started going off... and I couldn't make it stop. I wanted that baby.

After long heart-to-hearts with my husband, it was clear he just wasn't ready for adoption. And I couldn't blame him. It's not like other times when we've disagreed and my nose is all out of joint because he doesn't see it my way (come on, you know you all get like that). This time, he had real fears about the future. How the financial burden of supporting our family is by and large on him.  And worse, he had fears about being a single parent some day, if PH took the ultimate toll. These aren't fears we face head on too often. In fact, we never had before. We've chosen to live with the positive and not think that way. But when we're choosing to discuss a very purposeful choice for the long-term future, and involve the life of a child, we kind of have to wrestle with that dark side too.

For the sake of my marriage, I vowed to force this clock away. MAKE it go away. Focus on my son - whom I love and adore and is so so so enough in all possible ways. Basically, I tried to beat my biology. And pretend I was winning. And I did okay... for a while.

Then in the spring of 2013 I attended a dance recital. And I sat there and looked at the moms around me smiling with so much pride for their daughters on stage and I just lost it. I sat in the dark auditorium and cried silently. That should have been me. PH robbed that from me.

The grief followed me in the months ahead, although I tried to keep it in. Baby showers were torture. My sister got pregnant and I cried my way through shopping for the niece whose arrival I was over the moon excited for. And finally it was clear that I was going to have to either get some serious professional help in letting this all go, or re-visit the decision.

I tentatively broached the topic with my husband. And... he said yes. Why the timing is right now, I just don't know (neither does he). But my health is stable (thriving, even), all of my doctors are 100% in support of this decision, my business is growing, things have changed... and now we're ready as a couple and as a family.

Then it was just down to deciding on how to get her. International adoption held little draw now. I wasn't that interested in having to travel overseas with PH to go and collect her. Domestic adoption sure sounded good, but the tens of thousands of dollars it costs seriously deterred us. Surrogacy was also on the table... but I ended up deciding that if we really were going to do this, I needed to stay true to my original intent all those years ago and help a child in need.

And so, we were left with the foster system. We have chosen to adopt through social services and take a child whose parents can not care for her. It does not escape me that for us to get our daughter, someone else will loose theirs.

This path is scary. In fact, I should probably be much more jittery about it than I am. The child may come to us drug exposed, abused, neglected... who knows. We could be placed with a child, only to have the arrangement fall through because the system deems reunification with the birth family or extended family is better. But the truth is, the road to her has been so very long, sometimes so very hard, and now is the time.

It is going to be fine.

I have total peace about it. A peace that surpasses understanding, and I'm pretty content with that.

We're almost done with all of our DCF licensure requirements.

Now, all we have to do is wait for her.

The Long Road to Her was originally posted on Colleen's blog on July 2.  Follow Colleen's blog, PH and "The New Normal"

Thursday, August 14, 2014

I Am Not My Disease!

By Kiara Tatum


Kiara and niece being silly
I was reading a youth worker journal article, and the topic was identity.  I haven’t seen it yet, but the article was referring to the movie, “Fault in Our Stars.” The movie follows the growing friendship of Hazel, who is diagnosed with cancer, who meets Augustus, also diagnosed with cancer, at a support group meeting.  Augustus asks Hazel, “So what’s your story?”  She proceeds to tell him about when she was diagnose with her cancer.  But he interrupts her and says, “No, not your cancer story, but your real story.” 

That statement made me think about how I defined myself since diagnosed with PH eight years ago.  I was someone before I was sick, and I built friendships, had hobbies, and participated in activities that didn’t revolve around PH.  Sometimes we are so focused on our PH diagnosis and that PH journey that we forget that we are much more than that.  How I identify myself is important when sharing my story with others.  Do I start with I was diagnosed with PH in March 2006 after years of knowing that something was wrong with me.  Or do I start with: My name is Kiara, and I like to be silly and have fun.  I love to watch the ID Channel, sing songs out of nowhere, laugh and smile a lot.  I love the Lord because He loves me and He has brought me through such hard times such as these that I want to show that love to others, so they too will know who the Lord is through my actions which is easier said than done. 

So you see I’m more than just a girl diagnosed with PH at the age of 26 who had to leave her job because she wasn’t able to continue to work.  I’m more than that, and so are you.  You are more than a diagnosis that your doctor gave you, and you are more than this disease that wants to destroy every part of you.  We are PHighters, we are survivors, we are warriors, and we are strong.  And we should not let ourselves be defined by our disease any more. 


I love to listen to music from alternative to country to pop to r&b; I love to laugh and smile; I love to spend time with my family; I’m an aunt, I’m a sister, and I’m a daughter.  I sometimes get mad for no other reason than I woke up that way and will probably stay that way for a few hours; don’t take it personal.  I’m terrified of spiders, and I love to work with youth.  So that’s a little bit about me. So what’s your story? Not your PH story, but your real story?

Sunday, August 3, 2014

Dealing with changes in your health

Guest Blog Post! By Sara Hunt 

Like sufferers of most chronic illnesses, PH patients have to deal not only with the symptoms and impact of PH itself but also with sudden changes in our health and lifestyles. Booking a holiday a year in advance feels like tempting fate. Life is suddenly so much more unpredictable and fragile than it was pre-diagnosis.
My health has been particularly unpredictable. Changes in my health have happened practically overnight on more than one occasion. Three years ago a lung haemorrhage caused a dramatic increase in my pulmonary pressures and I went from perusing a promising career as a dancer to using a wheelchair for any kind of outing. Then, February this year, I simply woke up with worsening breathlessness that never got better. I'm now on the transplant list.

There's something about breathlessness and fatigue that once you settle into a routine of avoiding the amount of exercise that makes you feel unwell, you don't really notice improvements in your health until you're forced to do something you don't usually do and find to your surprise that you can do it without extreme breathlessness or dizziness. Worsening breathlessness is easier to notice and you suddenly have to make changes to the way you live to deal with them. Of course it's always important to do as much as you can but PH symptoms are so unpleasant it becomes impossible to push beyond a certain point. You have to make changes and this can feel like your disease is controlling your life.

Given the increasing unpredictability of my life I feel I might be able to offer some advice here.

1. Stop comparing your life to the lives of those around you.
Everyone is guilty of doing this. We crave constant reassurance that our lives are good. Imagine a healthy person exactly how they are now, but everyone else in the world is Ussain Bolt. Their health and lifestyle would be exactly the same as it is now, it's only in comparison to all the Ussain Bolts that makes it seem mediocre. It's the old the grass is always greener on the other side. But if you constantly compare your life to others you'll forget to enjoy it. Do what you can, there are always things you can do, no matter how ill you are. 

2. Don't compare your health now to your health in the past.
On a similar note, it's important not to lament the past. Treasure the good memories rather than becoming bitter about them. Make good memories for the future, you'll probably need them!

3. Find ways of making things feel normal.
Although your life is going to be affected by your health, it doesn't have to control it. Making small changes and making an effort to go out and do the things you used to is important. From simply having a evening meal with your friends instead of a late night out to going to see a show instead of performing in one yourself.

4. Learn to adapt. It's easier said than done but humans are designed to adapt to change. It's much more nurture that gets us stuck in our ways rather than nature. We are designed to survive and do it to the best of our ability. It's not easy but it's completely possible and your mind and body is designed to do it well.


5. Help yourself feel in control.
We are all in control of our own lives and having a disease doesn't mean you're not. Making the effort to change the way you do things rather than cutting them out of your life completely is how I maintain some kind of control over my life. There are things you can't change but there are lots of things you can, concentrate on those. 

6. Get out and try something new!
So you can't do some of the things you used to but there are plenty of new things to enjoy. Go to a food festival, check out the local book stores and go to a reading of an author you've never heard of, go to a comedy show, visit the local zoo, do something you'd never have thought of doing before and take a good friend along with you. It's easy to get stuck in a routine but new things and regular outings are brilliant for maintaining your sanity. And spending time with people you love is an extra special bonus.

Hopefully these were useful. You're probably doing all these things already but this post should give you fresh drive to this summer and you can never have too much of that!

Feel free to post any advice you have for dealing with changes in your health or even dealing with a new diagnosis. 

For more blog post by Sara visit her site at http://thegirlwithheartdisease.blogspot.com/2014/03/big-decisions.html






Friday, July 11, 2014

Here Comes the Sun

By Marissa Barnes
As we enter into the warm summer months, I wanted to introduce myself as PHA’s summer intern in the Patient and Caregiver Services branch. The summer time is my first and foremost favorite time of the year, not just because I break from school, but because every day I feel rejuvenated by the warm air and happier with the sun shining.  A few years ago I read this quote and since has been my life motto, to
“Always bring your own sunshine.”
 I know for some, being in the sun can cause irritation and the time spent under the sun’s rays for others their summer might not even be all that sunny, for me, living in D.C. we have thunderstorms lined up every day of the week. Regardless of the weather, I try to find a little bit of sunshine in everything I do. I had made a post on the Facebook group asking what some of your summer plans are to be this summer, whether you are vacationing, spending time with friends, involving yourself in certain camps or groups, etc.

 Kevin Mayhood – Paskawych shares his summer plans saying, “I have a slogan and its ‘if I can do it, you can do it’ and I keep trying to push myself to attempt new things, despite this. I am 32, I was diagnosed in 2012, and I have IPAH currently, although there is a thought that we may have an idea as to a potential associative disease. I am spending my summer in my hometown of Marietta, Ohio, but it doesn't mean I am not excited. When I was going through my diagnostic process, I needed something to keep my mind off of everything, so I jumped into an idea a friend, and fellow theatre professional, had about starting a professional summer theatre company in Marietta. So, we formed a group, and over the last two years built up what we needed to pull it off”. (Mayhood-Paskawych).
Kia Thompson-Allen who is 39 and was diagnosed with PAH in 2007, tells us this summer she will be, “keeping my 8 year old busy, taking him to St. Louis to six flags and the zoo there”. Kia recommends staying in the water parks to stay cool, plus drinking icy beverages and finding shade when you can.  Kia explains, “you know it's hard on us PH'ers in the heat, plus my son being a severe asthmatic heat isn't good, so most activities we plan are indoors: library, Chuck E. Cheese, and an indoor trampoline facility; all those places are air conditioned :) and ways to  have fun and stay cool for us”!
Kristine and family at Detroit Zoo
Kristine Green is 35 and was diagnosed with idiopathic pulmonary arterial hypertension in July 2011.  She says, “This summer, I am ALL about family time! I am blessed to stay home with my four year old son. So far, we have gone to Movies Under the Stars- where you watch a movie outside up on the mountain to support our local firefighters, library reading programs, both of the "splash pads" in our town and played a lot in our yard. I am most excited to go camping on the Umcompagre Platuea and for a rafting trip on the Colorado River. Too cool off, we load up our three pups and head to the river or swimming pool (minus the dogs)! We like to make our own Popsicles or freeze fruit to munch on to stay cool too. My son and I are supposed to visit family/friends in Michigan (where I am from) for 17 days- visiting numerous cities while there. However, I am not sure about going right now since I am experiencing troublesome side effects from meds. If we do go, we'll go to Lake Michigan, the Detroit Zoo, festivals and maybe a Tiger's game! I will need a vacation from vacation after that! I like a lot about summer, but harvesting fresh fruits and veggies from our garden, camping and spending time with friends are probably my favorites”.
We love hearing from all of you and your plans for this season. Sometimes the heat can be intimidating to get outside and have fun, but there are many ways to stay cool and still enjoy yourself. I hope you all can find a little bit of sunshine in each part of your day

Wednesday, June 18, 2014

Generation Hope Goes to Indianapolis

by Kiara Tatum


It's almost time... conference starts on Friday, June 20.  And as people are traveling to Indianapolis for this year's conference, I see many postings from Generation Hope about their travels on Facebook. I'm very excited to meet up with PHriends that I haven't seen in two years, meet new PHriends, and see PHriends in person for the first time.  I"m a bit nervous about flying again.  My family isn't able to attend with me to conference, so I'll be traveling alone.  So as we all check in to the conference over the next days, don't forget review your conference program book.  There are many sessions centered around young adults that we hope you will attend.  There's also a special meet up for Generation Hope.   Generation Hope After Dark will be held on Friday, June 20, 8:30pm.  I hope you'll make it out. Previous Generation Hope After Dark in Florida was a lot of fun!  Brittany Riggins wrote about Generation Hope After 2012 in a previous posting.  This year we're adding a little game which you can win prizes, so you don't want to miss this one.  Join us for an evening of fun!!!

Safe travels to everyone!

Friday, June 6, 2014

Be Like a Kangaroo!

By Kiara Tatum


A few days ago, I was reading my daily devotional, and it was talking about how kangaroos -- due to their shape of bodies and large tails -- cannot walk or bounce backwards.  However, they bounce in forward movements very easily.  And I thought about how I move in my life, and how I can get stuck in certain places.  But the kangaroo can’t go backwards, and they move forward as part of their nature; I want to be like a kangaroo.  I want to always be moving forward.

This sounds easier for a kangaroo to do; since, it’s their animal nature, but it’s a lot harder for people, especially those with a chronic illness like PH to follow this concept.  To add this concept as part of our human nature; it seems almost unnatural.  As a PH patient, I’m always having thoughts about why did I get PH; what if I didn’t gain so much weight, would I have gotten PH; if my pediatrician saw the whole in my heart when I was younger, would I have PH now; if I didn’t decide to go back to work would I be dealing with Social Security complications; and so on and so on.  I don’t want to stay stuck on those things of the past because it's a lonely, dark, sad place to stay.  As I read in the devotional I can’t really live there, and I don’t want my PHriends to live in the past either.  I had to learn and I’m still learning these lessons in life:
  1. Leave the past behind you
  2. Reach for things ahead of you
  3. Think positively 
  4. Be hopeful
  5. And know you’re never alone
I will be like a kangaroo; always moving forward.  I will learn from my past, but leave it behind me, so that I can live a more fulfilled, joyous life.


Wednesday, April 9, 2014

Discussing PAH with an Inquisitive Child


Sadly, there isn't a flow chart that can adequately help us know how to discuss our disease with a child when they inevitably ask a spur of the moment, awkward question.  And for that reason I wrote this blog...



If you were a regular at my house, then you would hear on occasion me yelling, “La, la, la, la, la!”  I know it is a bit unusual so let me explain.  I have three small children and quite often trailers for scary movies are advertised during television programs we watch.  The remote is not always within reach so to keep our kids from getting scared, my husband and I yell and distract our kids until the commercial ends.  We do this because we like our children to have boundaries.

Boundaries are good.  It is good to exercise these boundaries when talking with young ones that are close to you as they ask you questions about PAH.  Auntie, why do you always go to the doctor?  Mommy, why does sister have that in her chest?  Why are daddy’s lips blue?  Not all of us are parents, but many of us have a relative, neighbor or a friend’s child that we love.  How then is the best way to discuss with a child the topic of PAH?

The most important key is to wait for them to ask and when they do ask have your answer ready.  The specifics of how to answer vary based on what you are comfortable with disclosing and the age of the inquisitive child.  Some things to avoid include death, life expectancy and the overall severity of the disease.  It is best to gear the conversation towards more positive aspects such as the quantity and quality of treatment available.

A few days ago while I was inhaling my Tyvaso, my three-year-old daughter looked up from playing and asked me, “Mommy, why do you have to do that?”  I briefly said, “Well because I need my medicine.”  Her follow up question was, “After you’re done can I have a snack?”  At the time that was all that was needed to ease her curiosity.  Her three-year-old mind is still developing, and it is best to keep boundaries on the depth to which I respond.  The questions will need a more in depth response as she gets older, but for now that meets her needs.

Her curiosity reached an all-time high when she found these paint tubes!
It has been difficult for me to process how I should introduce my children to the fact that I live with a disease.  The one thing that I keep going back to is the wisdom that “There is a time for everything, and a season for every activity under heaven.” (Solomon)  We must implement boundaries on the information we disclose while also disclosing enough to educate them.  Some children will be very curious while others will barely notice, but as the adult, it is our responsibility to help them understand.

By Hannah Lahmeyer