Next week will be my first attempt at a fundraiser.
After a few years of resisting I finally took the plunge and started an event that I hope will raise awareness and a few bucks for Pulmonary Hypertension research and support.
Zumba is a fusion of Latin dance and hip-hop and is wildly popular in health clubs everywhere. I wanted to do something that was going to be a ton of fun for family and friends to participate in, and maybe reach some people who hadn't otherwise heard of PH, or gotten involved in the cause.
I've been incredibly blessed this year to return to one of my first loves and dance again. Thank you God and modern medicine! So it was really cool to have the opportunity to sort of celebrate and integrate the whole thing and channel it for PH.
If you can't make it, we are gratefully accepting donations and 100% of all donations go directly to PHA. We were really lucky and got some grants to cover our event costs - so 100% really means 100%. :)
Check it out! http://zumbathonforph.blogspot.com/
Sunday, November 13, 2011
Tuesday, March 22, 2011
PH and Your Kids
I left the international PH conference last year having learned a lot. But there was one topic still on my mind that I had never heard addressed, and that I desperately wanted to know more about.
When the time came, how in heaven's name was I going to explain this condition to my son?
I thought about it a lot, requested it as a topic for the conference in 2012, but didn't want to wait that long.
And then it dawned on me... I'm an educator! I know about this whole talking to kids on their level stuff, I just couldn't put my own feelings about the disease aside well enough to mesh what I knew about kids with what I knew I will some day have to do regarding PH.
So, deep breath in, deep breath out, I tackled the topic. I wrote an article for the Pulmonary Hypertension Association. I was talking to my friend Sam about it and come to find out, she spent a lot of time talking to kids about their parent's illness when she worked as an oncology nurse. So, I sent her my article and she helped me round it out into something that could be used for all ages and stages, no matter where you are at with your illness. You can read the full version here: Helping Your Child Cope With Your Illness
I still dread the day my son asks why I'm sick. Right now he won't notice much of anything because I'm doing really well and all my medications and oxygen have been a part of his world for as long as he can remember. To him, this is all normal (ah, childhood innocence!) But, the day will come when he will start asking tough questions, and the day will also come when I have to give him some tough answers. But, now I feel just a little bit more ready.
When the time came, how in heaven's name was I going to explain this condition to my son?
I thought about it a lot, requested it as a topic for the conference in 2012, but didn't want to wait that long.
And then it dawned on me... I'm an educator! I know about this whole talking to kids on their level stuff, I just couldn't put my own feelings about the disease aside well enough to mesh what I knew about kids with what I knew I will some day have to do regarding PH.
So, deep breath in, deep breath out, I tackled the topic. I wrote an article for the Pulmonary Hypertension Association. I was talking to my friend Sam about it and come to find out, she spent a lot of time talking to kids about their parent's illness when she worked as an oncology nurse. So, I sent her my article and she helped me round it out into something that could be used for all ages and stages, no matter where you are at with your illness. You can read the full version here: Helping Your Child Cope With Your Illness
I still dread the day my son asks why I'm sick. Right now he won't notice much of anything because I'm doing really well and all my medications and oxygen have been a part of his world for as long as he can remember. To him, this is all normal (ah, childhood innocence!) But, the day will come when he will start asking tough questions, and the day will also come when I have to give him some tough answers. But, now I feel just a little bit more ready.
Saturday, January 22, 2011
Heart and Soul
Having PH is like... having emotional whip lash.... or maybe it is like reading a bad Nicholas Sparks novel... whatever the case, after much sadness, I have a happy ending to my current chapter.
Not gonna lie, the last couple of weeks sucked. Within my online support group we lost two members in just a couple of weeks. With both of them their passings were so unexpected. They were around, seemed to be doing well, and then BAM! Gone.
Sometimes that is the nature of PH, and while it is a fact I usually successfully bury deep deep away from my consciousness, loosing M. and then S., brought it screaming to light. I cried for a couple of days, especially over S. I had not met her in person, but I had the privilege of getting to know her parents this summer at Conference. They had traveled across the ocean from their home country to ours, seeking help for their daughter.
I spent so much time with them... looking into the mom's eyes, promising her there was hope. And what happened to that hope? It didn't pan out. I somehow, as irrational as it may be, felt guilty. I felt like I had offered her something false, like I was fooling myself into a false sense of security in the process. I ache for these people, who so desperately wanted to see their daughter well and now have lost her.
My team of support group co-leaders and I worried about the new members of our group too. How would they take the fact that two of our members passed so quickly? Would it scare them too much? How could we be honest and yet supportive at the same time? The truth is, you can't shield anyone from this. We did the only thing we could - gave the news, coupled with an urging to get involved towards fighting for a cure so that we don't have these losses any more.
In the midst of all of this I was preparing to go to my routine PH check-up. I was due for an echocardiogram, the first in a year, although I had a cardiac MRI six months ago. Pretty much they get a good picture of my heart every six months, and that picture is always bad. In addition, I would do my exercise test, the six minute walk, and have a check-up with the specialist. Since three appointments in a day are cake, I added a visit to the Rheumetologist later that day, you know, just for fun.
Since starting Tyvaso a year ago I have steadily improved symptom wise. This past June, I had marched in, head high, to my last cardiac MRI, so certain that my heart was finally going to show the improvement I've been dreaming about. Instead, I was crushed with the news that my hemodynamics continued to suck... big time. Heart size and functioning were still severely compromised. After fighting my way back from the black hole that news caused, I resolved "no more false hope"... no more going into these appointments with expectations that will be dashed.
This doesn't mean I lost hope, in fact I still had it in spades, but I stopped setting myself up for disappointment by thinking that this time, this time will be different. Instead, I continued to just focus on someday.
I don't even know how to make this story short, so bear with me. The echo procedure was standard, my six minute walk stellar, and my specialist said words I had actually dared hope for, "We'll see you in six months". Prior to this I had needed to see him every three months, and had done so for three years, but my steady functioning improvement was finally enough. Echo results weren't available yet, but I was happy enough with that.
Later that day I went to my Rheumy appointment. I walked in and he says, "Hey! How are you? Saw your echo results, looks good!"
WHAAAATTTTT??? I had never ever ever heard the words "echo" and "good" in the same sentence. Quite the opposite, actually.
I made him open up the computer to my records, and as he read me my results I entered a near dream state. He was saying to me the very words I had imagined and fantasized about and finally put aside...
Echo results: "Degree of right ventricle dilation,
dysfunction, and severity of tricuspid regurgitation has all
improved"
In addition, the right atrium is back to NORMAL, down from
severely dilated and my moderate tricuspid regurgitation is now
NORMAL!! The right ventrical still has significant dilation and
systolic function is still significantly compromised, but both have
improved
Translation: My heart is remodeling itself and repairing much of the damage of Pulmonary Hypertension. I'm not out of the woods yet, far from it. It could go back the other way. But for the very first time ever my body is showing inward signs of improvement.
I got a bit emotional right there in the office. And, since this doc has, well, no inner filter whatsoever, he turned to me and said the words that are destined to become classic in my circle of friends and family:
"Well! Ain't that the shit!"
It is, Doctor, it is indeed!
Just when I was on my knees emotionally, so unsure of where I was going to find my footing to get back to my positive outlook, God opened this window for me. There is hope in this disease process, even in the hopeless times. It may not be your time for improvement, just as so often it has not been mine. But hope is there.
Wow, this feels good.
Not gonna lie, the last couple of weeks sucked. Within my online support group we lost two members in just a couple of weeks. With both of them their passings were so unexpected. They were around, seemed to be doing well, and then BAM! Gone.
Sometimes that is the nature of PH, and while it is a fact I usually successfully bury deep deep away from my consciousness, loosing M. and then S., brought it screaming to light. I cried for a couple of days, especially over S. I had not met her in person, but I had the privilege of getting to know her parents this summer at Conference. They had traveled across the ocean from their home country to ours, seeking help for their daughter.
I spent so much time with them... looking into the mom's eyes, promising her there was hope. And what happened to that hope? It didn't pan out. I somehow, as irrational as it may be, felt guilty. I felt like I had offered her something false, like I was fooling myself into a false sense of security in the process. I ache for these people, who so desperately wanted to see their daughter well and now have lost her.
My team of support group co-leaders and I worried about the new members of our group too. How would they take the fact that two of our members passed so quickly? Would it scare them too much? How could we be honest and yet supportive at the same time? The truth is, you can't shield anyone from this. We did the only thing we could - gave the news, coupled with an urging to get involved towards fighting for a cure so that we don't have these losses any more.
In the midst of all of this I was preparing to go to my routine PH check-up. I was due for an echocardiogram, the first in a year, although I had a cardiac MRI six months ago. Pretty much they get a good picture of my heart every six months, and that picture is always bad. In addition, I would do my exercise test, the six minute walk, and have a check-up with the specialist. Since three appointments in a day are cake, I added a visit to the Rheumetologist later that day, you know, just for fun.
Since starting Tyvaso a year ago I have steadily improved symptom wise. This past June, I had marched in, head high, to my last cardiac MRI, so certain that my heart was finally going to show the improvement I've been dreaming about. Instead, I was crushed with the news that my hemodynamics continued to suck... big time. Heart size and functioning were still severely compromised. After fighting my way back from the black hole that news caused, I resolved "no more false hope"... no more going into these appointments with expectations that will be dashed.
This doesn't mean I lost hope, in fact I still had it in spades, but I stopped setting myself up for disappointment by thinking that this time, this time will be different. Instead, I continued to just focus on someday.
I don't even know how to make this story short, so bear with me. The echo procedure was standard, my six minute walk stellar, and my specialist said words I had actually dared hope for, "We'll see you in six months". Prior to this I had needed to see him every three months, and had done so for three years, but my steady functioning improvement was finally enough. Echo results weren't available yet, but I was happy enough with that.
Later that day I went to my Rheumy appointment. I walked in and he says, "Hey! How are you? Saw your echo results, looks good!"
WHAAAATTTTT??? I had never ever ever heard the words "echo" and "good" in the same sentence. Quite the opposite, actually.
I made him open up the computer to my records, and as he read me my results I entered a near dream state. He was saying to me the very words I had imagined and fantasized about and finally put aside...
Echo results: "Degree of right ventricle dilation,
dysfunction, and severity of tricuspid regurgitation has all
improved"
In addition, the right atrium is back to NORMAL, down from
severely dilated and my moderate tricuspid regurgitation is now
NORMAL!! The right ventrical still has significant dilation and
systolic function is still significantly compromised, but both have
improved
Translation: My heart is remodeling itself and repairing much of the damage of Pulmonary Hypertension. I'm not out of the woods yet, far from it. It could go back the other way. But for the very first time ever my body is showing inward signs of improvement.
I got a bit emotional right there in the office. And, since this doc has, well, no inner filter whatsoever, he turned to me and said the words that are destined to become classic in my circle of friends and family:
"Well! Ain't that the shit!"
It is, Doctor, it is indeed!
Just when I was on my knees emotionally, so unsure of where I was going to find my footing to get back to my positive outlook, God opened this window for me. There is hope in this disease process, even in the hopeless times. It may not be your time for improvement, just as so often it has not been mine. But hope is there.
Wow, this feels good.
Tuesday, November 16, 2010
Blogging Day 2.0
Welcome to the new blog site! I've made the move here because my old site just didn't have all the fun bells and whistles you can use here. All the content from the old blog is here as well.
If you're new to PH, or want to learn more about it, I recently participated in a interview on Connecticut Public Radio, which can be heard here: http://www.yourpublicmedia.org/node/8019
So, today is PH Blogging Day 2010. The day when we take to the internet and raise a ruckus about PH Awareness. I usually like to just write when inspiration strikes, or when I have something to kind of work through. But today is the day, so I need to post something! So... here's my story of diagnosis.
If you're new to PH, or want to learn more about it, I recently participated in a interview on Connecticut Public Radio, which can be heard here: http://www.yourpublicmedia.org/node/8019
So, today is PH Blogging Day 2010. The day when we take to the internet and raise a ruckus about PH Awareness. I usually like to just write when inspiration strikes, or when I have something to kind of work through. But today is the day, so I need to post something! So... here's my story of diagnosis.
I was diagnosed on January 2, 2008 and I am looking towards my third anniversary of diagnosis.
15 months prior to my diagnosis, I had given birth to my son, Aidan. And so, my story begins much like it does for many women, my PH came out with my pregnancy… but not at first. At first I thought I needed to “loose the baby weight”. I gave little thought to the day I was out walking and climbed a big hill, where at the top I handed off my infant son’s stroller to a friend, as I knelt to the ground turning ashen grey, with a pounding heart and a cold sweat. I foolishly thought I had better get my rear in gear and see a personal trainer or something. This baby weight thing seemed harder to deal with than I had anticipated.
I was so busy being a mom and juggling a part-time teaching job and moving into our first home, that I failed to attach significance to the fact that I was breathless after a small set of stairs at work, or that I would be in the middle of a sentence in front of my class, and simply run out of air.
But then I came down with pleurisy, three times in one winter. Toughing it out, a round of natural remedies, and a round of antibiotics did nothing to stop the re-occurrences of this lung infection. By the third round, I was spent. One evening, I climbed my basement stairs and suddenly the heart pounding returned. I knelt onto the kitchen floor, certain I was going to pass out. After catching my breath, we took a trip to the Emergency Room. And then my journey really began.
In the Emergency Room, they found no initial significance to my symptoms. I didn’t tell them about the hill, or the stairs, or the breathless sentences because at that time I didn’t even realize it must all be connected. After a chest x-ray and an EKG, I was sent home.
The next day was Monday. I received a call at work, on my voicemail of all things.
“Hello, this is so and so from Bristol Hospital. Um, the radiologist read your chest x-ray and you have an enlarged heart. It’s probably no big deal, but you should see a cardiologist just in case. Here’s a phone number.”
Holy crap. In my limited imagination of what could be wrong, it seemed impossible that an enlarged heart could be “no big deal”. I dutifully visited the man I would later credit as perhaps saving my life. Dr. Joseph Marakovitz, a cardiologist in a small city in a small hospital saw me first. He did a series of tests. I remember my first echocardiogram. His tech chatted away with me, we had things in common, we laughed a bit. Then she stopped laughing. And she stared hard at the screen. And she didn’t talk much for the rest of the test. And I just knew. I didn’t know what I knew, but I knew it was bad.
Dr. Marakovitz met with my husband and myself to go over results. He told us that the best-case scenario was a hole in my heart. He also told us there was a worst-case scenario, but we were not going to talk about it because it would scare me too much, and if we got there I was headed straight for a specialist. He sent us home with an order for a Right Heart Catheter and instructions to hope, of all things, for a hole in my heart.
Within such a very short time, the cath was completed. I took in what I could from my post-procedure haze. In my head I can still see the words “Pulmonary Hypertension” scrawled atop my medical chart, as Dr. Marakovitz wrote it out and leaned over my hospital bed to show me the name of a disease I was about to become intimately familiar with.
A few days later, after I had some time to process it all, and to read all the wrong and alarming websites, I called him back. I asked him to go over my numbers again. As he did, with a systolic pressure of 90, a diastolic pressure of 38, and a mean pulmonary artery pressure of 55, the true impact of the situation began to sink in. I began to cry on the phone, and I swear that good doctor may have cried too. I just remember him saying, “I am so sorry this happened to YOU”.
To this day, and now knowing what I do about how long it can take for PH to be diagnosed, I think of Dr Marakovitz as something of a gift in all of this. How he knew to go straight for the diagnosis if PH, and to get there so quickly, I’ll never know. But I am so grateful he did.
I was, as promised, sent directly to Dr. Raymond Foley, at the UCONN Medical Center in Connecticut. Dr Foley, his nurse practitioner Diahann, and the rest of his staff have become my mainstay. I know I can turn to them with anything, and I often do. Dihann in particular fields a whole lot of questions from me, and I’m often running in one unusual direction or another with my treatment, all of which she answers to with patients, understanding, and support.
Dr. Foley is perhaps the kindest person I’ve ever met. We sometimes don’t see eye to eye on some of my care, but his respect for me and his ability to work with me as his patient, to guide my medical treatment with his expertise, but also allow me to be the one who ultimately knows my body best is something I wouldn’t trade for the world. I think this is part of what makes him such a great doctor, and certainly the right doctor for me.
I am dutiful with my PH medications. Prior to diagnosis I practically had to be force-fed Tylenol for a headache. Natural remedies and healthy holistic living were kind of “my thing”. To divert from that, and become so intricately medically managed was a huge change for me, and something I still struggle with sometimes.
I started with Digoxin and Revatio, adding Letairis about eight months later.
I let Letairis sit on my counter a full 24 hours before I started it. I just kept looking at it, thinking, “Okay, these aren’t the big guns yet, but we’re moving on here. This is for real.” Images of liver function failure, whatever that looks like, and endless blood draws stretched before me and I hesitated to begin.
Its kind of a funny story, but the Red Cross had asked me years ago never to return to give blood – I was just too hard of a draw to handle. I didn’t know how I was going to repeat those tests month after month. I finally got up the courage and took the first pill. Not so bad, although I still give the woman who draws my stubborn blood work heart palpitations of her own, we move on.
Through all this, I found my own ways of dealing with the PH. I spent the first few months after diagnosis in what I refer to as “my cave”. I paced the house late into the night. I cried constantly. Little things that never used to bother me could throw me into a frenzy, for I had nothing left to fight with. To say one is devastated by such a diagnosis is truly an understatement.
I found a really good group of people on the Pulmonary Hypertension Association website, and they educated me and pulled me along in ways that were so helpful, but still things were missing.
I learned to put on that brave face, to tell my story to friends and family and assure them I was handling it all fine, and in some ways I was, but in others, I very much was not.
Through all this, most of my life felt like little changed. I had quit my job, but for reasons beyond PH, although the diagnosis certainly played a factor. I still kept up after my son. I still worked from home. I was even able to do some water aerobics.
Yet, I still felt lost and somewhat alone. Where were the other people like me with this disease? The young mothers? The professionals? The people still able to live most of their lives as they did pre-diagnosis? Did they not exist? Would I be able to keep up my own life or was I destined to find this “new normal” everyone was talking about, and would that new normal really be my new nightmare?
That is where I stood a couple of short years ago. A lot has changed since then. My functioning has improved drastically, but I must take medication five times a day, to the tune of $200,000 a year, for that to happen. And it could all stop working. I could start to go downhill tomorrow. In no time at all I could have a permanent tube in my chest, pumping in medication that would knock me out with side effects. I don't focus on that, but I can't forget it either.
This concept of "new normal" is something I struggle with. It is meant to be a way of adjusting your attitude, of accepting the way things are for what they are. It is meant to be encouraging, that life as you know it might be changing and you have to adjust and accept. But the thing is, I don't accept the way PH is. I hate it and I fight it every day. I kind of hate the phrase "Welcome to your new normal!" too, because nothing with PH ever stays the same, none of it is normal, and it sure as hell isn't something I would welcome.
So, I am refusing to accept this "new normal". Instead, I'm trying to create a better one every day. It's exhausting, but worth it.
Sunday, November 14, 2010
Finding A Voice
So, if you know me at all, you know I’m not exactly quiet. But the truth is, I’m still pretty shy sometimes. Public speaking has never been my thing (unless you are a room full of six year olds, then I’m all good!). But, I’m also pretty vocal and I’ve found the relative anonymity of working online to suit my personality very well. It gives me time to think out what I want to say, to change it six times, to stress over it and change it three more times after that, and t0 finally put forth to whomever cares to read it something I really want to express.
I believe that when you have something like PH you simply can not sit around waiting for something better to happen to you, and you must take your destiny into your hands by being proactive. For some, this involves fund raising. It turns out I am not one of those people! I’ve done fund raising and quite honestly, I don’t like it too much! I admire those who do it so well, but it makes me uncomfortable to ask for help. What works for me though is writing about my experience (clearly, a lot!) and what I know (some, and a little more everyday). It has become my message to other patients and their families that each of us must find our voice, whether it is through fund raising, or networking, or writing, or art, or… well, what’s your voice for PH?
A few months ago I was approached out of the blue and asked if I would be interested in speaking at the annual meeting of the REVEAL registry (www.revealregistry.com). In short, this is a massive national study that is endeavoring to put a modern face to Pulmonary Hypertension. The hope is that the new data will drive more focused research, better treatments, and ultimately a cure.
Would I like to speak to about 130 people who are instrumental in making this study happen: doctors, nurses, respiratory therapists, project managers, etc. Um, no, I was shaking just thinking about getting up in front of all those people…. and YES YES YES! What an incredible opportunity.
The YES! won.
So, in early October, I traveled to Boston and did just that. Writing the speech was a process. I sat down one night and banged out seven pages (about 15 minutes worth of talking). Then I started my obsess, revise, obsess, revise thing. As I said to my audience that night, “What does one say to a room full of people working to make your deepest desire come true – a cure for Pulmonary Hypertension?”
The general assignments I was given was to put a face and a story to the data – “A Day in the Life of a PH Patient” kind of thing, I guess. I’m okay with that, I don’t mind telling my story. But I also wanted to tell our story, the story of the PH experience… how any doctor that isn’t a specialist often risks a PH patient’s life because they simply do not know better, how medications and the fear of the future effects a patient’s ability to cope, how there are patients out there who get to defy every odd and how they inspire me to keep fighting. Many of my PHriends all chipped in their ideas and stories, helping me to shape what I ultimately would say.
The biggest message that I wanted medical professionals to come away with is that when they are treating PH they are treating a whole person, one with hopes and dreams and fears. I’m sure on some level they know that, but the clinical needs can trump other parts of a person’s needs during a routine appointment. I’d like to share the same idea with you, and to that end, here is a brief excerpt of what I spoke about that night. I hope it inspires you to take care of your emotional needs if you are a patient, to understand your loved ones needs if you are a caregiver. And if by chance you are a medical professional, I hope you can remember in the midst of all the incredible physical care you give us (thank you) to step back and say, “and how are you doing with all of this?”.
Having PH is like having a dark crystal ball. You know all the statistics. You know the words “degenerative” and “incurable” are ultimately pretty true. It is a little like living your life just waiting for the darkness to fall, and that is no way to be. So, in so much as is possible, I choose not to be that way.
I have a son to raise. Failure to do so without all the vivacity and energy I feel he deserves from me is simply not an option. Truth be told, if PH can be beat by pure stubbornness, then I’m your girl. I’ve been both credited and chastised for my stubborn Irish ways, but either way, I am quite sure the unstoppable fight in me takes some part in my ability to not just survive PH thus far, but to actually truly thrive with it…
In a particularly rough time a little over a year ago, a wonderful man with heart problems of his own gave me Dr. Bernie Segal’s classic, “Love, Medicine, and Miracles”. Through reading that book I came to the profound understanding that I needed to take spiritual control of my destiny with PH. I truly gave this whole thing up to God, and took the very conscious path of thinking always in positive terms, always with the belief that the cure will be found.
To say this and to live this are two different things. It has to be with every fiber of my being, or I loose a little strength and a little of my fight with each negative thought that enters my mind.
This is not to say I don’t have bad days. I am a strong patient. I am a strong woman and mother. But, a rough appointment or a scary test will still sideline me for a while. My smile and spunk in the doctor’s office, or the positive report to my parents on the phone, can turn to torrential tears when I am first alone after rough news.
I have learned to give myself permission to feel these things for a while, and then to pick myself back up, dust off, and begin again with new resolve. To deny the crappy hand I have been dealt with PH would be unhealthy, to wallow in it would be the same….
(and later)
Co-leading Generation Hope has given me a sense of purpose. Before it started, I was sitting around hating PH, but not too sure what to do about it past that. Now I feel like my ability to share my story, and my assurance that I can rest on these people when I struggle, makes me feel stronger and more powerful against the disease than ever. I hope every patient is encouraged and inspired to find their own outlets and their own ways to fight back.
I believe that when you have something like PH you simply can not sit around waiting for something better to happen to you, and you must take your destiny into your hands by being proactive. For some, this involves fund raising. It turns out I am not one of those people! I’ve done fund raising and quite honestly, I don’t like it too much! I admire those who do it so well, but it makes me uncomfortable to ask for help. What works for me though is writing about my experience (clearly, a lot!) and what I know (some, and a little more everyday). It has become my message to other patients and their families that each of us must find our voice, whether it is through fund raising, or networking, or writing, or art, or… well, what’s your voice for PH?
A few months ago I was approached out of the blue and asked if I would be interested in speaking at the annual meeting of the REVEAL registry (www.revealregistry.com). In short, this is a massive national study that is endeavoring to put a modern face to Pulmonary Hypertension. The hope is that the new data will drive more focused research, better treatments, and ultimately a cure.
Would I like to speak to about 130 people who are instrumental in making this study happen: doctors, nurses, respiratory therapists, project managers, etc. Um, no, I was shaking just thinking about getting up in front of all those people…. and YES YES YES! What an incredible opportunity.
The YES! won.
So, in early October, I traveled to Boston and did just that. Writing the speech was a process. I sat down one night and banged out seven pages (about 15 minutes worth of talking). Then I started my obsess, revise, obsess, revise thing. As I said to my audience that night, “What does one say to a room full of people working to make your deepest desire come true – a cure for Pulmonary Hypertension?”
The general assignments I was given was to put a face and a story to the data – “A Day in the Life of a PH Patient” kind of thing, I guess. I’m okay with that, I don’t mind telling my story. But I also wanted to tell our story, the story of the PH experience… how any doctor that isn’t a specialist often risks a PH patient’s life because they simply do not know better, how medications and the fear of the future effects a patient’s ability to cope, how there are patients out there who get to defy every odd and how they inspire me to keep fighting. Many of my PHriends all chipped in their ideas and stories, helping me to shape what I ultimately would say.
The biggest message that I wanted medical professionals to come away with is that when they are treating PH they are treating a whole person, one with hopes and dreams and fears. I’m sure on some level they know that, but the clinical needs can trump other parts of a person’s needs during a routine appointment. I’d like to share the same idea with you, and to that end, here is a brief excerpt of what I spoke about that night. I hope it inspires you to take care of your emotional needs if you are a patient, to understand your loved ones needs if you are a caregiver. And if by chance you are a medical professional, I hope you can remember in the midst of all the incredible physical care you give us (thank you) to step back and say, “and how are you doing with all of this?”.
Having PH is like having a dark crystal ball. You know all the statistics. You know the words “degenerative” and “incurable” are ultimately pretty true. It is a little like living your life just waiting for the darkness to fall, and that is no way to be. So, in so much as is possible, I choose not to be that way.
I have a son to raise. Failure to do so without all the vivacity and energy I feel he deserves from me is simply not an option. Truth be told, if PH can be beat by pure stubbornness, then I’m your girl. I’ve been both credited and chastised for my stubborn Irish ways, but either way, I am quite sure the unstoppable fight in me takes some part in my ability to not just survive PH thus far, but to actually truly thrive with it…
In a particularly rough time a little over a year ago, a wonderful man with heart problems of his own gave me Dr. Bernie Segal’s classic, “Love, Medicine, and Miracles”. Through reading that book I came to the profound understanding that I needed to take spiritual control of my destiny with PH. I truly gave this whole thing up to God, and took the very conscious path of thinking always in positive terms, always with the belief that the cure will be found.
To say this and to live this are two different things. It has to be with every fiber of my being, or I loose a little strength and a little of my fight with each negative thought that enters my mind.
This is not to say I don’t have bad days. I am a strong patient. I am a strong woman and mother. But, a rough appointment or a scary test will still sideline me for a while. My smile and spunk in the doctor’s office, or the positive report to my parents on the phone, can turn to torrential tears when I am first alone after rough news.
I have learned to give myself permission to feel these things for a while, and then to pick myself back up, dust off, and begin again with new resolve. To deny the crappy hand I have been dealt with PH would be unhealthy, to wallow in it would be the same….
(and later)
Co-leading Generation Hope has given me a sense of purpose. Before it started, I was sitting around hating PH, but not too sure what to do about it past that. Now I feel like my ability to share my story, and my assurance that I can rest on these people when I struggle, makes me feel stronger and more powerful against the disease than ever. I hope every patient is encouraged and inspired to find their own outlets and their own ways to fight back.
If You Have to Be Here, It's Worth Being HERE
Original Date: November 5, 2010
Wow, so here we are at the one year (and 3 days) anniversary of this blog! Yes, the time for PH Awareness Month has rolled around again. The time of year when I resolve to write here more than once every couple of months.
I want to start out on a positive note because this year has been, by and large, very positive PH health wise. There have been ups and downs, and a lot of it has been chronicled here over the months, but really, I can’t complain too much.
There have been two huge highlights for me this past year. I think I’ll start with just one for this post.
The first was attending the International Conference in June. What an experience. To sit amongst over 1,000 people who actually get what I’m going through is amazing. The Pulmonary Hypertension Association rocks. They have this way of bringing together patients, caregivers and doctors onto this level playing field I suspect you don’t see too often in medical communities.
I sat in on sessions led by doctors, and some led by patients. I had breakfast with doctors who could answer my questions. I had some questions that couldn’t be answered, but that’s okay. I got to participate in several research projects by visiting the research room and lending my data, and feedback, and many vials of blood.
Most importantly, I got to meet so many patients I have only known online. I was able to channel all the work I’ve been doing over the past year or so and help mentor and lead groups of patients too. That was pretty cool. I was the welcome person for the young adult meet and greet room on the first day.That kicked off meeting this wonderful couple who had traveled all the way from Israel just to find help and resources for their daughter. PH is rare all over the world.
The really cool role I was asked to play was to sit on a panel of “The Next Generation of PHA Leaders”. It was really an honor and a surprise to be asked. I sat up on stage at breakfast one day with a few other go-getters. Two of my co-panelists were fundraiser extrodinaires, and one just happened to have participated in a half-ironman with his PH! Me… I talked about this blog, and co-leading Generation Hope.
There were two particularly poignant events for me. The first was finally meeting patients who just defy my every understanding and expectation of Pulmonary Hypertension. There were some there who are true athletes, and others living lives that the statistics just say aren’t possible. Screw the statistics, I’ve met those people, and am working myself like crazy to become and stay one of them.
The second was listening to Carl Hicks speak. Carl was the outgoing chairman of the board this year. His beautiful daughter Meaghan passed away from complications after her transplant. To hear Carl speak, to see a father wipe away tears for his daughter, but strengthen his voice and his resolve even as he struggled, was both heart-wrenching and inspiring. I cried every time that man got up to the podium. His emotions were raw, and his reason for fighting, for still fighting after his loss, was so powerful. I am beginning to realize many of our PHA leaders are in his shoes, having lost loved ones to this disease but carrying on their memory and their fight long after the loved ones have moved on to finally breathe easy.
We’re really blessed in this community. If we have to have this absolutely shitty hand dealt to us, then I at least don’t want it to be anything else and I don’t want to be involved anywhere else. The advocacy of our community has brought us from zero PH therapies in 1994 to eight different approved medications now. The average survival rate of around six years is still absolute crap, but it is also triple what it used to be. There are eight more drugs in the FDA pipeline that show a lot of promise, and dozens of other research studies going on.
Our doctors are real people who see their patients as real people. When I ran into my docor at a conference last year, he greeted me with a warm hug. I had the privilege of meeting who I consider to be one of our nation’s premier PH specialists a few months ago (more on that later!) and when I e-mailed him to thank him for his time, my response a day later was signed with his first name, no DOCTOR! formality needed. My nurse and I exchange technical questions and e-mails, followed by “and how are your kids?” I admire these men and women who have dedicated their professions and their lives to saving us. The work they are doing is inspiring and I am deeply grateful.
The Pulmonary Hypertension Association is the heart and soul of it all. They listen to their members like you wouldn’t believe. They inspire research, raise unheard of funds, and even help move legislation through Washington. No small feat in the current political climate, but we’re doing it! (Want to help? Click HERE). Most of all, they provide a place of support and refuge for patients. And not just patients in general. They’ve managed to reach out to all these little sub-groups and create communities within the larger PH community. They gear up for and then sponsor conferences around the country, and then awareness month.
Well, awareness month is here. Wear your periwinkle of Fridays. Tell a friend about Pulmonary Hypertension. Tell them about me if you want. But just get the word out there.
Wow, so here we are at the one year (and 3 days) anniversary of this blog! Yes, the time for PH Awareness Month has rolled around again. The time of year when I resolve to write here more than once every couple of months.
I want to start out on a positive note because this year has been, by and large, very positive PH health wise. There have been ups and downs, and a lot of it has been chronicled here over the months, but really, I can’t complain too much.
There have been two huge highlights for me this past year. I think I’ll start with just one for this post.
The first was attending the International Conference in June. What an experience. To sit amongst over 1,000 people who actually get what I’m going through is amazing. The Pulmonary Hypertension Association rocks. They have this way of bringing together patients, caregivers and doctors onto this level playing field I suspect you don’t see too often in medical communities.
I sat in on sessions led by doctors, and some led by patients. I had breakfast with doctors who could answer my questions. I had some questions that couldn’t be answered, but that’s okay. I got to participate in several research projects by visiting the research room and lending my data, and feedback, and many vials of blood.
Most importantly, I got to meet so many patients I have only known online. I was able to channel all the work I’ve been doing over the past year or so and help mentor and lead groups of patients too. That was pretty cool. I was the welcome person for the young adult meet and greet room on the first day.That kicked off meeting this wonderful couple who had traveled all the way from Israel just to find help and resources for their daughter. PH is rare all over the world.
The really cool role I was asked to play was to sit on a panel of “The Next Generation of PHA Leaders”. It was really an honor and a surprise to be asked. I sat up on stage at breakfast one day with a few other go-getters. Two of my co-panelists were fundraiser extrodinaires, and one just happened to have participated in a half-ironman with his PH! Me… I talked about this blog, and co-leading Generation Hope.
There were two particularly poignant events for me. The first was finally meeting patients who just defy my every understanding and expectation of Pulmonary Hypertension. There were some there who are true athletes, and others living lives that the statistics just say aren’t possible. Screw the statistics, I’ve met those people, and am working myself like crazy to become and stay one of them.
The second was listening to Carl Hicks speak. Carl was the outgoing chairman of the board this year. His beautiful daughter Meaghan passed away from complications after her transplant. To hear Carl speak, to see a father wipe away tears for his daughter, but strengthen his voice and his resolve even as he struggled, was both heart-wrenching and inspiring. I cried every time that man got up to the podium. His emotions were raw, and his reason for fighting, for still fighting after his loss, was so powerful. I am beginning to realize many of our PHA leaders are in his shoes, having lost loved ones to this disease but carrying on their memory and their fight long after the loved ones have moved on to finally breathe easy.
We’re really blessed in this community. If we have to have this absolutely shitty hand dealt to us, then I at least don’t want it to be anything else and I don’t want to be involved anywhere else. The advocacy of our community has brought us from zero PH therapies in 1994 to eight different approved medications now. The average survival rate of around six years is still absolute crap, but it is also triple what it used to be. There are eight more drugs in the FDA pipeline that show a lot of promise, and dozens of other research studies going on.
Our doctors are real people who see their patients as real people. When I ran into my docor at a conference last year, he greeted me with a warm hug. I had the privilege of meeting who I consider to be one of our nation’s premier PH specialists a few months ago (more on that later!) and when I e-mailed him to thank him for his time, my response a day later was signed with his first name, no DOCTOR! formality needed. My nurse and I exchange technical questions and e-mails, followed by “and how are your kids?” I admire these men and women who have dedicated their professions and their lives to saving us. The work they are doing is inspiring and I am deeply grateful.
The Pulmonary Hypertension Association is the heart and soul of it all. They listen to their members like you wouldn’t believe. They inspire research, raise unheard of funds, and even help move legislation through Washington. No small feat in the current political climate, but we’re doing it! (Want to help? Click HERE). Most of all, they provide a place of support and refuge for patients. And not just patients in general. They’ve managed to reach out to all these little sub-groups and create communities within the larger PH community. They gear up for and then sponsor conferences around the country, and then awareness month.
Well, awareness month is here. Wear your periwinkle of Fridays. Tell a friend about Pulmonary Hypertension. Tell them about me if you want. But just get the word out there.
Loss
I am such a mess of emotions right now. From angry to humbled and heartsick, it’s been a hell of a ride these last few days.
I’ve spent the last week battling my specialty pharmacy company over a medication delivery. The specialty pharmacy is on my hit list right about now.
Long story short, I followed up on a medication delivery no less than four times, which then never showed up. Once I called customer service and just about set the rep’s ear on fire, I was ASSURED and PROMISED that my medication would be arriving today. Bullshit. None, nada, and I have run out (well, they think I’ve run out, I’ve kept a secret stash from the last time they screwed up, but shhhhhhh!)
I’m annoyed on one level and was (I’ll explain the past tense in a moment) livid on another. See, the thing with this company is that they require that you sign for your delivery of medication. Incidentally, the other specialty pharmacy who handles PH meds does not.
This is problematic on many levels. First of all, I’m not home bound. I’m blessed to feel well enough to live the life I’ve chosen, and that means some mornings I work and others I am out and about with my son. Not everyone with PH gets this choice. My medication allows me to do that. Staying home for a four hour window for a delivery is a huge inconvenience.
This time though, it got personal. To stay home on Friday for the medicine delivery that never came I had to miss my son’s preschool Halloween event. It’s a little silly to be upset about something small like that, but the truth is my moments are precious. I believe I will beat this thing and I will live. But the odds are completely stacked against me. The odds say I’ll be lucky and unlikely to see him out of grade school. I don’t get to have another kid and do it again, because childbirth is deadly. So, to miss even a second, when I’ve committed to be there, becomes gut-wrenching for me. I don’t think I even realized how important these moments had become until I was denied one by someone’s stupidity.
I was also going to have to miss his soccer game this morning, but my dear friend and neighbor agreed to be on lookout for the package that still never came so I could go cheer him on. I am really blessed by the friends and family around me.
So, yesterday and this morning I was ready to roll heads. How dare some pharmacy company screw with my life? I got a little Momma Bear, I guess. Or, as my dad says, I really “got my Irish up”.
Then, I log on to facebook. And I find out that a girl whose story I have followed since my diagnosis has died from complications from her PH. She was 21. And now what? I can’t exactly stay mad over an inconvenience caused by my pharmacy company and ultimately my illness when someone else has died because those medications stopped working for her and her transplant attempt failed. Suddenly, my problem seems pretty minuscule in comparison.
So, as I sit here still wiping tears for Becky and her family, I’m reminded even more acutely than I was yesterday how precious every second is. How even as I felt foolish yesterday for being angry at missing some Halloween pictures of a bunch of four-year olds, I was somewhat justified. If we don’t find a cure for this blasted disease, the sadness Becky’s family feels at this moment, is the sadness all our families face, and that’s really hard to swallow.
Go hug someone you love.
I’ve spent the last week battling my specialty pharmacy company over a medication delivery. The specialty pharmacy is on my hit list right about now.
Long story short, I followed up on a medication delivery no less than four times, which then never showed up. Once I called customer service and just about set the rep’s ear on fire, I was ASSURED and PROMISED that my medication would be arriving today. Bullshit. None, nada, and I have run out (well, they think I’ve run out, I’ve kept a secret stash from the last time they screwed up, but shhhhhhh!)
I’m annoyed on one level and was (I’ll explain the past tense in a moment) livid on another. See, the thing with this company is that they require that you sign for your delivery of medication. Incidentally, the other specialty pharmacy who handles PH meds does not.
This is problematic on many levels. First of all, I’m not home bound. I’m blessed to feel well enough to live the life I’ve chosen, and that means some mornings I work and others I am out and about with my son. Not everyone with PH gets this choice. My medication allows me to do that. Staying home for a four hour window for a delivery is a huge inconvenience.
This time though, it got personal. To stay home on Friday for the medicine delivery that never came I had to miss my son’s preschool Halloween event. It’s a little silly to be upset about something small like that, but the truth is my moments are precious. I believe I will beat this thing and I will live. But the odds are completely stacked against me. The odds say I’ll be lucky and unlikely to see him out of grade school. I don’t get to have another kid and do it again, because childbirth is deadly. So, to miss even a second, when I’ve committed to be there, becomes gut-wrenching for me. I don’t think I even realized how important these moments had become until I was denied one by someone’s stupidity.
I was also going to have to miss his soccer game this morning, but my dear friend and neighbor agreed to be on lookout for the package that still never came so I could go cheer him on. I am really blessed by the friends and family around me.
So, yesterday and this morning I was ready to roll heads. How dare some pharmacy company screw with my life? I got a little Momma Bear, I guess. Or, as my dad says, I really “got my Irish up”.
Then, I log on to facebook. And I find out that a girl whose story I have followed since my diagnosis has died from complications from her PH. She was 21. And now what? I can’t exactly stay mad over an inconvenience caused by my pharmacy company and ultimately my illness when someone else has died because those medications stopped working for her and her transplant attempt failed. Suddenly, my problem seems pretty minuscule in comparison.
So, as I sit here still wiping tears for Becky and her family, I’m reminded even more acutely than I was yesterday how precious every second is. How even as I felt foolish yesterday for being angry at missing some Halloween pictures of a bunch of four-year olds, I was somewhat justified. If we don’t find a cure for this blasted disease, the sadness Becky’s family feels at this moment, is the sadness all our families face, and that’s really hard to swallow.
Go hug someone you love.
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