woman posing with her boston terrier in front of a christmas tree

The Story of Sammy: Why I Got a Dog After My Diagnosis


There are two things I have wanted all of my life: a drum kit and a dog.

The drum kit never really panned out because they are ginormous, expensive and loud. I tried getting my hands on several other musical instruments instead, but as a professional master of none, I am less than mediocre at playing every single one. It seems unlikely I will get a drum kit now, but given my history with instruments, it wouldn’t have been a good investment anyway.

While growing up I was never allowed to get a dog because my parents (understandably) didn’t want to have to deal with the mess or stress. Simply put, my parents weren’t dog people (plus, their house has beige carpet).

 

My desire to get a dog grew after my pulmonary hypertension diagnosis, but I knew I wouldn’t be able to fly the nest anytime soon. It became very lonely feeling as if I was living an eternal sick day from school, and I truly thought that having a dog to keep me company would help with some of the more difficult emotions I was working through.

Eventually, I had to retire from my professional grown-up job, which left me feeling more lonely. It was then that I finally saw my chance to make my dream of having a dog a reality. I told my parents that getting a dog would be my “Make-a-Wish.” (Obviously, they couldn’t say no once I pulled out the “I’m reeaalllyy sick” card.)

It was decided I could get a dog. However, pulmonary hypertension makes it really difficult for me to bend up and down, which means it would be very difficult for me to train a puppy. There is no way I would be able to train and chase after a puppy as it destroyed one side of the house to the other. I would need a trained dog to avoid all of that bending and cleaning.

Determined to get a Boston terrier (my favorite breed), I sent an email to every breeder within a four-hour drive from me. In my email I explained my situation: I am a young adult who is retiring from work because of a serious illness, and I am looking for a Boston terrier who is ready to be spoiled and enjoy retirement with me. I soon had visions of me and my would-be dog wearing Hawaiian shirts and drinking iced tea on the deck.

Although a few breeders got back to me, only the right dog would be my perfect match. His name? Sammy, a former show dog and a soon-to-be retired stud. The whole process was a bit like online dating. After exchanging several emails with Sammy’s owners, I swiped right, and I finally got to meet Sammy to see if we were a fit.

Upon meeting him, Sammy jumped all over my dad and me. For me, it was love at first sight. For anyone who has never had the pleasure of meeting a Boston terrier, they can easily jump several feet. His former owner explained that he was about 4 years old, and that they were his third home. She was surprised by how excited Sammy was with us, as she said this reaction was unusual for him.

After meeting Sammy, I feared my dad would say we couldn’t get him. I am sick, and at the time I was pretty frail, and here was this cannonball of a dog jumping all over me like a crazed beaver. As soon as the car door closed, my dad smiled and said, “We gotta get that thing. He’s awesome!” Apparently, it wasn’t just me who experienced love at first sight with Sammy. It was clear – he was our dog.

Eventually, Sammy was re-homed with us. Because he was used mostly for breeding and as a show dog, he didn’t really know how to “dog.” I had to teach him how to lie in a dog bed and how to play with toys. Thankfully, these were two things I could teach him, even with my physical limitations.

This summer marks two years since I officially retired from work due to pulmonary hypertension, meaning it has been two years since I got Sammy.

woman posing with her boston terrier in front of a christmas tree

Having a dog like Sammy has really made my retirement more enjoyable. He is my companion while the rest of my world is busy during the day at work. He oinks like a pig because of his short snout and will perform acrobatic jumps to receive a cold, crisp carrot from the fridge. Sammy will curl up in my lap each morning before I start the day, and he’s always there to greet me at the door when I come home from a doctor’s appointment.

Can a drum kit do all of that? Didn’t think so!

Needless to say, it is hard not to smile when Sammy is around. I think both of us are excited to enjoy another lazy summer together.

This post originally appeared on Pulmonary Hypertension News.

We want to hear your story. Become a Mighty contributor here.

RELATED VIDEOS

ph aware banner

I'm Aware That I'm Rare: Peter Leary, MD


Dr. Peter Leary is a specialist in pulmonary and critical care medicine who cares for patients with pulmonary hypertension. Dr. Leary is focused on clinical care and research for patients with pulmonary vascular disease. He breaks down the five points every pulmonary hypertension patient should discuss with their PH specialist during each follow up visit. 

Transcript:

I’m Peter Leary, a pulmonary hypertension physician at the University of Washington and I wanted to talk to you just a little bit today about follow-up.

So, what do I mean by follow-up? There is a lot of focus rightly so at the beginning of a pulmonary hypertension workup. You’re a patient, you’ve just come into the hospital, or you come into an out-patient clinic and there are a lot of tests. There are a lot of conversations and there are a lot of discussions about what drug do I take? How much drug do I take? What are my options? What’s the prognosis?

What is hugely important though, is not just that first experience, but all the ones afterwards. Everyone’s heard the phrase “take two aspirin and call me in the morning.” I’ve always felt like the most important part of that phrase is the, “and call me in the morning.” Everyone focuses on the “take two aspirin.” That’s what we do a lot in medicine too. What drug are we going to give you? What dose are we going to give you? Do you have a disease for which that drug works?

What is hugely important is the “and call me in the morning.” Particularly early in the course of follow-up, we may find that we’ve given somebody a drug for pulmonary hypertension and they’ve gotten worse. Sometimes that means we didn’t give enough medication. Sometimes it means we didn’t give the right medication. Sometimes it means they don’t have pulmonary arterial hypertension or a disease that’s treated by these drugs.

So early in the course of follow-up, it’s very important to kind of take stock, keep an open mind both as a patient and as a doctor to say, “Is the disease that we think I have the disease that I actually have?” Medications are a great way to test that idea and check and see whether that’s true. It doesn’t mean that just because you feel worse after you started PAH drug that it’s not the right drug. There are a lot of side effects, which most people can progress through and are left with the benefits of the drugs and not the side effects, but it should be a good jumping off point to say we need to keep an open mind as we go through follow-up.

Then as a physician, what my goals are after I fell pretty confident in what the diagnosis is to kind of hit at least five points during any visit that I see for a patient with pulmonary hypertension. One of those is, is there evidence of disease progression? When I see a patient, I want to know are their good days slipping? Everyone has good days and they’ve got bad days, and a bad day can happen for a lot of different reasons. It can happen because you had a Big Mac and a salt and two gallons of water and you feel terrible. You got a bad night’s sleep, the dog was barking, whatever it happens to be, but if the good days are slipping, when you say, “Hey, you know I had a good day last week, but I couldn’t go quite as far as I did before,” that worries me that the disease is progressing.

So as a pulmonary hypertension doctor, I want to take the information and say, “If I think the disease is progressing, do I need to be more aggressive in how I treat it? Do I need to increase the dose of the drugs my patient’s already on or start a conversation with them about whether or not it’s time to add a new drug or think about a different approach.” This is where a lot of the routine things that happen, the blood work, the six minute walk, the echo, the conversation, all of these things go into that impression of is the disease progressing or is it staying still on the regimen that we have?

The second part of any visit that I’ll have with a patient is to think about adverse drug events. Are you having side effects from your PH drugs? We know that pulmonary hypertension drugs are part cure and part poison. We know that they’ve got some side effects with them and I try and make a point of explicitly talking about the side effects of every visit because sometimes people will ignore the side effects of a PH drug, they won’t bring them up at the visit, and then an opportunity is missed to really sit down and think about whether or not we have other medications that can treat the side effects, whether or not the pulmonary hypertension is under such good control that we can pull back a little bit and get rid of some of the side effects, make somebody feel better without compromising on their pulmonary hypertension control. Or to really sit down and say, “Well, is this symptom you’re having, is this new problem you’re having, is it actually related to pulmonary hypertension or actually related to the drugs? Or are we missing the opportunity to treat a completely different medical problem that could make you feel better?” Did you get kidney stones along the way? Do you have something like that that really would be in your best interest to treat and could make you feel a lot better completely independent of pulmonary hypertension?

The third thing that I spend a lot of time with on every visit is how is it going with fluid? Are you carrying around a lot of extra fluid? Does your physical exam look like you have a lot of extra fluid? Is your weight going up? I think taking time to say … All the patients in our clinic keep a diary. Every day they write down how much they weigh and just a quick one through 10, how are they feeling that day. If people’s weight is consistently going up, are they carrying around too much extra fluid? Is it time to take a visit to the nutritionist to think about hey, what are some more ways that we can cut salt out of the diet? What are some more ways we can focus on not getting too much fluid in? What are some tricks that work for some people? Sucking on a lemon drop, things like that that may take away that feeling to go get a big glass of water without getting a big glass of water. Do we need to increase medicines to make you pee out some of that extra fluid? So I find that oftentimes when people are feeling worse with pulmonary hypertension, it may be just a problem with all that extra fluid. If the heart gets stretched out, it is hard to squeeze a good solid beat out because it’s too stretched to do it. If you can get rid of that fluid, the heart comes into a much happier place and can beat much more strongly.

The next thing that we think about on almost every visit is lifestyle modifications. So part of that is the things that I was talking about, making sure we cut back salt, making sure we cut back fluid. We keep revisiting these over the course of the years that we work together, because it’s easy to go off the rails there at some point, but there are other things that are important too. So exercise is incredibly important. It used to be that we would say exercise will teach your body how to do more with less. There’s even some research that’s come out of Germany in the not too distant past that shows that exercise is changing the disease. It’s making the resistance to blood flow less. It’s allowing your heart to pump more. Doing structured exercise is important in this disease. Not only does it make people feel better and do more, it can actually potentially impact the disease itself.

So different exercise is different for everybody with PH. For some people a structured exercise program is five minutes every day being more active and then building that up over time. Some people, it’s much longer than that and so it’s very individualized, but whatever level it is I think that it’s important. So we spend some time talking about those kinds of lifestyle adaptations and changes that are not drugs, but are still hugely important in feeling good with pulmonary hypertension.

Then the last thing we do is we just run through any symptoms, any new symptom that a patient is having. As a pulmonary hypertension doctor, all my patients also have a primary care doctor and it’s not my intention to kind of take over the role of a primary care doctor, but what I do want to make sure is that it’s very easy for patients and the entire healthcare team alike to say everything I feel is related to my pulmonary hypertension or the drugs that I’m on for pulmonary hypertension. By going through those symptoms we can say, “Oh, that may be pulmonary hypertension, that may be a pulmonary hypertension drug. Oh, that symptom probably is not related to pulmonary hypertension.” So as a healthcare team, and by healthcare team I mean patients, families, doctors, primary care doctors, this allows people to help keep an open mind and find where are the other problems that we can help correct.

We’re always going to be focused on the pulmonary hypertension.We’re not going to forget about that, so one of the key aspects of this is if somebody has a bunion on their foot and we blame it on their pulmonary hypertension drugs, we’re never going to fix that foot pain, but if we instead call a spade a spade and treat the bunion, they’re going to feel a lot better than if we just blame it on their PH drugs.

My name is Peter Leary and I’m aware that I’m rare.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at phaware.global/podcast. Learn more about pulmonary hypertension at phaware.global. #phaware 

ph aware banner

I'm Aware That I'm Rare: Donna Head


Pulmonary hypertension patient Donna Head was diagnosed with PH before any treatments were available.  Donna, a former nurse, discusses how living with an invisible illness has been a challenge and how she’s contributing to a cure.

Transcript:

My name is Donna Head, and I’m from Stapleton, Alabama.

In 1988, my son was born in April, and three months later, we went to Hawaii to see my brother, and we were climbing up Diamond Head, and I noticed that I couldn’t do it. My sister in law just went right on up. We got up to the steps at the top of Diamond Head, and I looked up at my brother, and I said, “I can’t do this.”

I was a nurse, and I went back home. I went to work, and just progressively my heart would race. I didn’t get short of breath, but my heart would race a lot, and then I passed out at work one day, and nurses, doctors don’t take very seriously that they’re sick. You have to just be about dead to get help. Well, I was just at that point. They sent me to a cardiologist, and he put me on a treadmill, and I went three minutes, and my heart rate was at 180 beats per minute, and they put me in the hospital the next morning for a right heart catheterization.

They waited till the next day to tell me. That’s what really bothers me. They told me the next morning, and he sat on the side of my bed, and he said, “Donna,” he said, “You’ve got primary pulmonary hypertension.” I said, “Okay, well let’s fix it.” He said, “We can’t. You’re going to live two years.”

So I went home and still thought he was joking. I didn’t think anything about it. There were no medicines back then for pulmonary hypertension, so they sent me to Birmingham for a heart transplant evaluation, and we went from there. Few years later, finally some medicines started coming out, and that was good. I think it really helped in a way. There was not a big transition. I’ve gradually worsened over the years, so we’ve added medicines, but right now, my pressures are pretty close to normal. I lead a very average, normal life. I really do and have for years.

I started to get sick in ’88. I was diagnosed in ’91, and the transplants weren’t lasting a long time then. The most you could get out of a heart/lung transplant back then was five years, and I did not want to just live five years. I wanted to live a lifetime.

I have family that still doesn’t believe I’m sick because I didn’t die when they told me I would. “You’re not sick. You’re not sick.” And then I have family that really takes it in and believes it, and they’re real good about it. When I was first diagnosed, I lived in a small town, and I would go to the grocery store, and people would look at me strange. It was like, I don’t have anything catching, people. You can’t catch this from me. But most the time, people just look at me like I’m normal, because I don’t look sick, and I’m lucky. I don’t have anything else wrong with me. I tend to get overly medicated really fast. I don’t have to take a lot of pulmonary hypertension medicines for them to work.

I lead two support groups, one in Mobile, Alabama and one in Pensacola, Florida. For the past three years, my Mobile group and I, we put on a race, a 5K race, to raise money for pulmonary hypertension, and it’s gone really well. I just want the whole world to know about pulmonary hypertension because if everybody knows about it, something will finally get done, and they’ll find a cure.

I’m Donna Head, and I’m aware that I’m rare, and I love it.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at phaware.global/podcast. Learn more about pulmonary hypertension at phaware.global. #phaware

ph aware banner

I'm Aware That I'm Rare: Tilman Humpl, MD


Dr. Tilman Humpl is the Director of the Pulmonary Hypertension Service at the Hospital for Sick Children in Toronto, which is part of the Pediatric Pulmonary Hypertension Network (PPHNet).  One focus of Dr. Humpl’s clinical work is the management of children on a ventricular assist device. As the Director of the Pulmonary Hypertension Service at the Hospital for Sick Children, he runs an outpatient clinic with referrals from several Canadian provinces.  He discusses his contribution to the Pediatric Pulmonary Hypertension Guidelines.

Transcript:

I’m Tilman Humpl. I work at the Hospital for Sick Children in Toronto. I’m a pediatric cardiologist with a main focus on critical care. Pediatric cardio-critical care and pulmonary hypertension in children.

I think in pediatrics for a long time we had no guidelines at all. We were following the adult world where there’s less patients in pediatrics, so a lot of centers started later than the adult centers and we were always in cross talks but we never managed to get one single platform together and I think over the past … it started almost ten years ago, there was a try of getting things together and really getting everybody from the neonatologist to the cardiologist to the intensive care doctor to the lung doctors together and establish something for discussions also in the future.

Yeah, the very first patient I saw with pulmonary hypertension was 20 years ago in Germany and this was a patient who was put on prostacyclin and the only medication available at that time and I think since early 2000 having now different medications available really changed the field dramatically, so not only the intravenous medication with a very short half life but also now oral medications that can be combined and make the patient better or actually postpone the use of intravenous medication.

I worked on the critical care business of the guidelines and also a small contribution in the mechanical support part of the guidelines. We see, fortunately not a lot of pulmonary hypertension anymore in the postoperative phase, maybe don’t look in too much detail anymore, but 20 years ago it was almost 20 to 30 percent of patients who had some element of pulmonary hypertension. Nowadays, we see it a little bit less but if we see it, it’s profound and then we have to have some guidelines how to deal with these events of pulmonary hypertension and one of the possibilities, for example, is to give inhaled nitric oxide (iNO) or switch over to an oral drug if the pulmonary hypertension is still existing.

I think therefore the whole field, not only for doctors who are not working in pulmonary hypertension, but also for physicians who are working with pulmonary hypertension, but maybe in smaller centers, maybe who are trying to develop a pulmonary hypertension program, but also for larger centers to unify a little bit more the approach in how you diagnose, in how you treat and you follow up on pulmonary hypertension, because there were also a lot of differences all over North America, but certainly all over the world, and it’s not only that North America is looking at these guidelines, but I think also other countries in the world looking at these guidelines, as well.

I think compared to 10 or 15 years ago, the gap is getting smaller because I think, or let’s say 20 years ago, pulmonary hypertension was a disease that nobody wanted to deal with and you may or may not have seen in the life of a physician, you may have seen one or zero patients, but now I think physicians or even general practitioners, family physicians are much more aware of the disease and over the 10 years I got much more referrals than compared to five to eight years earlier of patients just to rule out pulmonary hypertension, because I think it’s getting more and more on every doctor’s minds to also not just think it’s asthma or it’s something else but really it’s pulmonary hypertension.

We had one patient in Toronto that was moved around to different physician’s offices and at the end was diagnosed with pulmonary hypertension and this patient made it to the front page of the local newspaper and I think after that the increase of referrals from the Toronto area was really substantial. It’s slowed down a little bit but I think given these new drugs in the publications like the guidelines, it’s more and more in the mindset of physicians.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at phaware.global/podcast. Learn more about pulmonary hypertension at phaware.global. #phaware

ph aware banner

I'm Aware That I'm Rare: Demos Papamatheakis, MD


Demosthenes (Demos) Papamatheakis, MD is a board-certified pulmonologist and intensive care specialist from UC San Diego. Dr. Papamatheakis participates in multiple clinical trials looking at new medications geared toward pulmonary arterial hypertension treatment. As an assistant professor of medicine, Dr. Papamatheakis has a strong interest in medical education and is an active participant in training medical students, residents and fellows in pulmonology and critical care medicine.

Transcript:

I’m Demos Papamatheakis.

That’s short for Demosthenes. It’s a very, very Greek name. I grew up in Greece, did most of my schooling in Greece and then moved to the US around 2003. I did my internal medicine in Michigan and my fellowship at Loma Linda, which is up the street here in southern California. I’ve been at UCSD for the four and a half years or so, doing pulmonary hypertension and chronic thromboembolic pulmonary hypertension.

UC San Diego is one of the leading places in the world as far as pulmonary hypertension. There’s a lot of expertise here. To put it very simply, chronic thromboembolic pulmonary hypertension is one of these not very common diseases but nevertheless, probably more common that people expect and very much under-recognized. It has to do with getting blood clots, usually that start from the legs and migrate into the pulmonary vascular beds, so the vessels in the lungs where, instead of dissolving with time, they end up scarring down creating blockages in these vessels.

The blockages cause increased resistance in the vessels there that cause problems in the right side of the heart, that’s supposed to pump blood against this increased resistance and can end up in right heart failure and death. It’s a very morbid disease.

The good news about it is that all of these clots don’t dissolve by themselves and can be dissolved by medicine. They can be removed by surgical procedure, which we do here quite a bit, called a pulmonary thromboendarterectomy, which is a pretty big procedure that lasts quite a few hours in the day, but it’s one that our center has a lot of experience now with. It’s one that can be life-saving. It removes the resistance, it removes the clots, relieves the right side of the heart and allows for right heart failure to resolve.

Being one of the centers in the world that we get a lot of referrals, most of our patients are like that, they’re not local. The process is quite lengthy. It usually starts with a referring doctor sending us a packet of information. The referring docs can be anywhere from the same state, the same country, or even different continents. Different people from our group will go through this packet of information, kind of try to tease out whether this is a patient that we think surgery would be helpful for. Depending on our decision, we go ahead and invite them here for this. That process can actually take a few months just to get all the nitty gritty of insurance, travel, and just get everything set up and scheduled for this person.

Eventually, once they get here, they end up staying for about a week before the surgery where they do quite a bit of workup, quite a bit of testing. Once that testing is concluded and everyone’s in agreement that, yes, we should go ahead and proceed with the surgery, the surgery usually happens the week after. The people usually stay for about 10 to 12 days in the hospital, depending on how everything went and whether there were complications or not. Ideally, after that, things have improved significantly and they get to go back home.

We definitely have all stages and all kind of different disease spectrum patients that we see. Being one of the centers that has more experience in this, we also tend to be the center that gets a lot of the trickier and harder patients, later stage patients, patients that less experienced centers with less experienced surgeons would not be comfortable dealing with them. And also patients that have had the surgery before and require a second operation for either new clots or some other complication, but we also see patients that are much earlier in their disease state. They don’t have a lot of pulmonary hypertension but have a lot of symptoms and also have a lot of blockages. By removing the blockages we can take care of the symptoms and avoid possible right heart failure or worsening symptoms in the future.

One of the problems, one of the things that we have to deal with here at UCSD, if you can call it a problem, is a lot of our patients leave and we don’t get to see them because they’ve come from the far reaches of the world. Having said that, most of the time the way that they leave the hospital compared to the way that they come to the hospital is completely different. That’s extremely rewarding. This is probably the main reasons we do this and we deal with this disease, even though it’s very tricky situation, at the same time, the difference that we see with the surgery is just impressive, it’s incredible. All of our patients are, at least 95% of them are extremely appreciative. That, in combination with the feeling that we did something important and impacted their life is just extremely rewarding.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware

The Bride from Kill Bill.

What a Quentin Tarantino Character Taught Me About Life With Pulmonary Hypertension


I was flipping through TV channels the other evening and came across one of the most motivational parts of “Kill Bill: Volume 1.” If you are a Quentin Tarantino fan, you may already know what scene I am referring to. The Bride has woken up from a coma-like state, and is struggling to regain movement. She stares at her feet and commands, “Wiggle your big toe. Wiggle your big toe. Wiggle your big toe.” Out of sheer will, the Bride is able to gently wiggle her big toe. A grin reaches her face and she says, “Hard part’s over.”

In a way, this has become one of my many mantras for living with pulmonary hypertension (PH). Living with PH makes me short of breath, and it is an ongoing frustrating battle. As someone who didn’t grow up with a physical disability, it’s been a hard thing to become accustomed to. (Not being able to breathe in your 20’s is a whole other issue within itself.)

Suddenly stairs and hills have become some of my biggest opponents. I look up at them with a sense of aching in my heart. They have become a reminder of all the things I can’t do, my newfound struggles, and a reminder of how my life has changed. I look up at them and whisper, “Just breathe. Just breathe. Just breathe.”

Some days are easier than others. Every now and again, I can go up a flight of stairs with 14 steps with very few issues. Other times I find myself gasping for air by the halfway point, breathing harder than my dog after he runs to the fridge for a carrot. I can feel every bone in my body rattle as I quickly try and fill my lungs with oxygen. My mantra comes back into my mind. “Just breathe…” But unfortunately, I can’t always will myself into being able to breathe the same way the bride had willed her big toe to move.

Sometimes I feel like hell in a handbasket as I try my hardest to go up a large staircase, or bravely walk across a parking lot in the winter air. Because PH can be an invisible illness, my struggles aren’t always visible to strangers nearby. However, I picture myself covered in blood, dramatically crawling to my destination while gently reminding myself to breathe. As an exuberant former art student, I need my struggles to be aesthetically accurate to how I feel. (I am not dramatic, just creative!)

As I was growing up and trying to find my place in the world, I really admired Tarantino movies. They became a staple of mine in high school because of all the strong female leads (or as I like to say, “bad ass women”). Some of which would set themselves on fire, just to ensure eventual death of their enemy. His leads aren’t timid little ladies, but women with a big plan and little fear. I find myself trying to gather inspiration and strength from those characters again. Hearing “Wiggle your big toe” was the reminder I needed about the motivation that has been slipping through my fingers the past few months.

After my diagnosis, I find myself digging deep to find myself again. I will be the first to admit this “situation” sucks, but I don’t want anyone to feel bad for me. Being diagnosed has taken a lot of options out of my hands, and placed it within the hands of the disease. It has made having a positive attitude more challenging, but at this point, it is one of the few things in my life I can have control of. I’ve been trying my best to be strong, ask questions, and protect myself. I try to do these things because I want to be the heroine of my own damn story.

In fact, one of the first PH specialists I saw told me that I will die because of PH. I quickly learned I would have to learn to be brave and start asking hard questions if I wanted a chance at survival. While chained to an oxygen tank, I immediately began to argue with him. What if I die in my 80’s? What if I die in a car accident? What if I die in a freak accident trying to rescue elephants from the circus? Something about someone else trying to tell me how I will die didn’t sit well with me. I eventually decided a doctor who already thought my days were numbered, and that hope was useless, couldn’t be a part of my story. I am looking for a doctor who can help, not be another of my opponents.

Whatever may happen, and no matter how challenging things may feel — keep trying to wiggle that big toe! Some days, weeks, months and years are harder than others, but I have learned to try to divide my time by moments. Every time I find myself gasping for air at the top of the stairs, I whisper “Now the hard part’s over.” I catch my breath, and try to prepare whatever else may lay itself in front of me.

This post originally appeared on Pulmonary Hypertension News.

We want to hear your story. Become a Mighty contributor here.

Photo via “Kill Bill” Facebook page.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.