Linda Wimmer - phaware® interview 454

New Jersey patient, Linda Wimmer, shares her experience with idiopathic pulmonary arterial hypertension. Linda discusses the various medications and lifestyle changes she has had to make to manage her condition. She also mentions dealing with depression and anxiety, as well as the challenges of accepting help from others. 

My name is Linda Wimmer, and I'm from Morris County, New Jersey. I was diagnosed with idiopathic pulmonary arterial hypertension in 2014.

I knew something was wrong years before. It took me about two and a half years, if not longer, to get diagnosed. I found out a lot of other things about my body, but not exactly what my diagnosis was. I found out I had sleep apnea. I found out I had another condition called syringomyelia, which is a cyst in my spine. I found out, too, that I had papilledema, which is increased intracranial pressure in my head. I found out other things, and all these things that were happening, I'm like, oh, that's the cause of my shortness of breath, and it wasn't.

I started with shortness of breath, feeling very, very fatigued. I had chest pressure, swollen legs, pitting edema. I used to exercise a lot, and I felt like the more I was exercising, the less I could do, whereas prior, I could exercise a lot and then do more. Then simple things just became difficult, like climbing the stairs I was out of breath. I would be talking to people, and they'd be like, why are you still out of breath? I'm like, I'm out of breath? I didn't even realize it.

I had worked in healthcare, so I was aware of certain things that were going on, and I had researched a lot of things myself. I was narrowing down my diagnosis on my own, too. I became very, very frustrated, because I felt when I went to the doctor, sometimes, they weren't really listening to me or I didn't feel believed what was going on.

Even after, it was actually on a Christmas Day, I was feeling horrible. The night before, which was Christmas Eve, I was up late trying to get everything ready for Christmas, trying to do everything. My whole family was over. I was trying so hard just to survive. I couldn't breathe. I didn't want to eat. I was so filled with fluid. I couldn't urinate. I couldn't do anything. I just was like, I just have to make it through today. I just have to make it through today. Well, I was getting up to actually go to the living room to open up presents with my family, and I just collapsed and fell on the floor.

I was rushed to the hospital, and the doctor came up to me and said, "Did you ever hear of heart failure?" I'm like, "Yeah, of course I heard of heart failure." Even after that diagnosis, it didn't happen that I found out I had pulmonary hypertension. It wasn't actually at that date, until almost a year later, that I was diagnosed.

I came home from the hospital on oxygen. I had stairs in my house. They told me to put in a chairlift, because stairs were totally my nemesis. From there, I saw a specialist, and it took me a while to get an appointment, probably about three months from the time that I was home from the hospital with oxygen that the specialist did tests and did other things before I started on my first oral meds. Then shortly after that, I was put on another oral med, so two oral meds, and then an inhaler with supplemental oxygen.

I have had a history of depression, but when I hit this diagnosis and what was happening, the depression really didn't come out. It's funny. I always say there's nothing that kicks you out of a depression and feeling like you want to die than the reality that you might die, and that's basically what happened. But then, anxiety kicked in because I wanted to live and I was scared.

One of the problems that I had with pulmonary hypertension is I would have a lot of chest pain. I felt for a while that kind of went untreated. I tried different medicines. I guess they had to find the right cocktails for me in so many ways, but I really felt one of the things that really helped me was I was put on a med just for chronic angina, and that did help a lot, because I was getting such chest pains.

I had to make a lot of different lifestyle changes. I was a very active person prior. I had my own house. I used to rip out my own carpeting, refinish my own furniture, and bring in piles of mulch and do outside stuff. Now just vacuuming the house, I was out of breath. It was hard. How I cope now with it is that I do little things at a time. The thing that is probably the most difficult is I have little patience sometimes with myself. It's like I want to get something done and that's not going to happen as soon as I would like it to happen. I have had to sit down and learn from it and have more patience. I have a lot of patience with people and animals and things like that, but I don't always have patience with myself.

Another thing in my life prior, I was a caregiver, so I'm not really happy or comfortable having people take care of me. I feel sometimes a burden, and that really kind of weighs on me. I don't want to be a burden. I want to be totally independent. I'm very lucky I have a family that is supportive, but then again, they do also have their own lives, and I want to make sure that I don't put too much stress on them. I have very good friends that are supportive, but no one really understands what is going on, I think, as much as another person that has a chronic disease or kind of a similar disease.

One of the things that I found most helpful was the support group. Then early on, I went to a conference, and that was just the best thing ever to meet so many people. They might be far away because the conference is for everybody, wherever, regardless of where they live, and you go and you meet people and you talk to them, and everyone has their own story. But you could also stay in contact with them through Facebook or other ways or texting or whatever. It feels like a big, huge, warm hug. You understand the daily stresses that they have, because you're feeling them, too.

Other things that I had to do in my life that have changed, too, is, of course, the diet of no salt and trying to eat healthier. I really have to admit I could be a better patient. I feel bad sometimes when I go to the doctor. I hate to even let him down sometimes because sometimes I feel like I'm letting myself down. For some reason, I feel worse that I'm letting the doctor down than I even do about myself, which is so messed up, but it's the truth. I don't always put myself first in that way. I'm working on that and working on being a better patient and taking better care of myself and trying to do the things that I know are right. It's just a daily struggle.

Sometimes I eat out of frustration, which is really bad. I stress eat. Whereas before, maybe I would go to the gym, I definitely don't get out as much as I used to to do things. So I feel sometimes the most stuck in that way. That has to do with just feeling fatigued or feeling not so great sometimes.

If anyone has any feelings about whatever is going on with their body and they know something is not right, regardless of what it is, if it's something with breathing or something with their heart or something that they continually go and go and go and go until they find the answer. It's so important, especially with pulmonary hypertension, to get diagnosed because it's a progressive disease. The sooner you start treatment, the slower, hopefully, the progression will be. It will also help you feel better.

But it's so important, because there were times in the beginning I just wanted to give up. Actually, at one point, I said to my family, "If I should die, just make sure you send me and get a really good autopsy," because that's how I felt, like I was going to die and I was not going to know what was going on, but I knew something was so wrong.

For newly diagnosed patients, the best thing I think you could do is join a support group or just even find one other person that has PH or ask your doctor if they could set you up. Definitely get involved in something, because most of the stuff that I have learned or that I really needed to know about has not been from my doctor. It's been from other people who say, "Oh, this is what you have to do," or "this is what you need to do." I cannot tell you how much other patients have brought to the table who talked about their story and talked about their symptoms that you really get to know.

As of right now, I'm doing okay. I'm taking it day by day. I take it day by day. I don't judge it by week to week. I judge it day by day. I wake up every day, and I'm thankful. The more I'm thankful for, the better the day. Sometimes the thing that I'm thankful for is I take a shower and the temperature is right, and I'm like, thank you. That was really good. Or I look outside and the sun is shining my face, thank you. Or you put on a cozy sweater and just like, oh, this is thankful. Or someone calls you and you're like, oh, that was so good.

It's not the big things anymore. I used to always say, "Oh, it's the trip to Florida. It's the trip to Europe. It's this, this, and that." Now it's like the little things I'm so thankful for. Just the little things in life have become so much more important to me. That's what I've learned about myself.

My name is Linda Wimmer, and I am aware that I'm rare.

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