I have accepted pulmonary arterial hypertension and its symptoms. Unfortunately, as my new normal, I have to take an oxygen tank no matter where I go, the frustrations are, I can no longer do the things that I used to be able to do. Showering is a very difficult chore for me to do. There are lots of things that I used to be able to do that I can no longer do.

Hi, some of the frustrations I have as a patient is the inability to do things that I used to do, such as cleaning my house, playing with my kids, doing hiking activities. I used to be a an avid hiker. I used to do boxing. I used to do dancing. All of those types of things I can no longer do. I am getting a little bit better with the treatment and I’ve been able to start to do some light cleaning, but I haven’t really been able to really take care of my household and I have to make exchanges. If I want to clean then I won’t be able to do something else later. It really takes a lot of energy out of me to do the cleaning and then I can’t participate in family activities in the afternoon because I’m too tired or if I participate in a family activity going out, sometimes I slow everybody down because I can’t walk as fast. I need to stop and catch my breath as I go along. We’ve not really been able to go out and do hiking and things like that, that we used to do and I can’t do all the physical activities and things that I want to do.

My condition impacts my day-to-day life, basically putting me at high risk. So in the current days, it affects my ability to even go to work, because I have a doctor’s note putting me at a high risk. So, I am currently worried about losing my job because I’ve been out of work since the middle of March. So I’m trying to work with my work to do a medical leave of absence, that I can at least maintain my employment.

Before my medications, I struggled to go upstairs, laying down, do day-to-day things, shower. After medication treatment, I’m on three, Uptravi, Adempas, and Opsumit. I can do most of those things. Stairs are still an issue, but if I take them slowly, I can get up there and do it.

Some of the challenges, I’m not able to do some of the things that I used to do. For the most part, I can do most things, I just have to take it a little bit slower. One of the challenges is stairs are difficult. I used to live in an apartment on the second floor, so I had to move to a different apartment that was on the ground floor. So I adjusted by moving. I wear oxygen, so I have a handicapped parking space. So by being allowed to park closer to the door, I’m able to shop in more places than I used to. That made a big difference because I didn’t want to go shopping, because just walking from the parking spot to the store sometimes is exhausting, and by having the handicapped parking space, it really helped a lot. As far as frustrations, some people don’t understand the limitations. They either think I can’t do anything and handle you with kit gloves, or they think that you should be able to do more because I constantly say, “I can live an almost normal life.” Like I can do almost anything, but I still have to do things a little bit slower. So while I can participate, I just have to modify things a little bit. So if the girls want to go shopping all day, I can hang with them, we just have to walk a little slower, I have to take breaks and sit down occasionally. So that’s how I’ve handled those.

I’d say that just about every aspect of my day to day life is impacted. The ones that are most impacted are the ones that surround activity, so things like doing chores, going food shopping, trying to exercise are all very, very, very much more complicated. It’s frustrating that I have to deal with these physical limitations and it’s also frustrating that nobody can see my disease without my oxygen on. Some of the things that I’ve done to adjust are doing things like trying to make my movement as efficient as possible, so that everything that I have to do as far as moving, is concerned, take as few movements as possible. I’ve also done things like gotten a disability placard, so I don’t have to walk as far and that kind of thing.

I am on a pump for pulmonary arterial hypertension, and it’s very frustrating that I have to carry this thing around with me for the rest of my life. It is like being tethered to a post for the rest of your life. Once a month, I have severe site pain from the injection site, and I’ve been getting around it by trying out different topical analgesics, ice, and heat. I’ve also tried carrying my pump in different ways, in different pouches, and tried different tapes and different seals to keep my pump from getting wet, such as in the shower.

On a day to day basis I have to mix my medication once a week. I do eight days and then I have to change the medication every day. And I can’t go over 24 hours because the medication won’t be good after 24 hours at room temp. And I also have to take pills in the morning and it’s changed my life because I have to pack a ton of stuff if I’m going somewhere, because I always have to have extra meds, extra pump, extra supplies for my line. And I always have to make sure I let my doctor know if I’m going anywhere, so if I call him, he knows where to call if there’s an emergency or anything. I have to carry medications on ice with me everywhere, just in case my pump stops, I have to have the extra pump. It’s just a whole lot of stuff that you have to do every single day.

My day to day life has been impacted greatly. I need help with all of my daily living necessities, like cleaning, cooking, even making a simple meal is difficult. I can’t vacuum, I can’t sweep, I can’t do laundry. Can’t garden. I have to be careful of how hot it is, how cold it is. It’s very frustrating at times because you can’t just get up and go. There’s so many other things that you have to do to prepare to go. And then when you do go, you have to make sure it’s a place where my wheelchair can go. Or if I can’t bring my wheelchair and they have something that I can use there, and that’s not always possible. So there’s a lot of times I miss out on things because of that.

I would say the biggest challenge is fatigue. It seems that no matter what I do, as far as eating healthy, taking my meds, exercising even, I always seem to have just this overall tiredness that it’s hard to deal with.

I had a double lung transplant in November 1st, 2018. Before that I was on 24 hour oxygen. I literally couldn’t walk to the end of my driveway, even on oxygen, without being out of breath. If I walked any distance, I would have to sit down before I could talk to anybody. And before my surgery, I was probably about three months away from dying. After the lung transplant, although it’s been a long, hard road, I’m much better and coping well with all of the changes in my life.

Lack of energy, constantly taking medication throughout the day, making sure I take my pills on time. Definitely affects my day-to-day living. Always having to think ahead of where I’m going and what it is I’m going to be doing to make sure that it’s something that I can physically handle. And again, just not knowing the next day, if I’m going to have enough energy to follow through with a commitment or not.

Pulmonary hypertension impacts my day to day life by, sometimes I have to monitor my weight daily, figuring out how much salt I need to eat, taking the medication and also monitoring the water that I drink. The frustration, the challenges that I experience is also monitoring the water that I drink because I also have another condition that makes me, that requires me to drink more water, but I’m not supposed to drink too much water with pulmonary hypertension. It’s an issue there. The challenges that I experience are sometimes very short of breath, swollen certain areas of my body. So I had to seek medication to get some of that fluid out. And what have I done to adjust these challenges? I have altered my diet, make sure I check the sodium that is in the food that I eat.

Hi. My pulmonary hypertension affects my day-to-day life every day. I don’t know what to expect, how I’m going to feel. Some days I’m so tired I can’t get out of bed. Other days I could go and do all kinds of errands or running around and be fine. And then medication also affects me in that it makes me tired or not tired, or I have to take it at a certain time so I have to be able to be available to take it at that time and plan ahead. It just has it diminished life quality. So it has, yeah. Basically not able to do the things I used to do because I get exhausted too easy.

The way that it impacts my day-to-day life is I’m not as independent as I used to be because I’m more weak and have trouble doing daily chores and everything. What I have done to adjust these challenges is I have learned to start off tasks, just one at a time, start easily. And when I can master one, I increase to the next one. I allow myself to have good days. I allow myself to have bad days. That way, it’s easier to be able to move forward.