I’m Aware That I’m Rare: Sue Liss (487)
the phaware® interview
PAH patient and Chicago-area support group leader, Sue Liss, discusses her pulmonary arterial hypertension diagnosis. Sue is involved with multiple PH related advocacy groups. Through these groups, she offers support and guidance, particularly in navigating medication funding challenges and accessing the right care, emphasizing the importance of community and shared experiences in managing this rare disease.
I’m Sue Liss. I was diagnosed with pulmonary arterial hypertension in 2007 when I was living in Colorado. I am now living in Chicago. I had had cancer. I had a reaction to the chemotherapy and they had to start me on heparin. They found out I was allergic to heparin. I had clots in my lungs and arteries and they cannot say 100% for sure that that’s why the PH developed, which is why I’m considered idiopathic. But they do believe that those clots in my lungs may have led to it.
I was diagnosed when I was living in Colorado. They did tell me at that time that I should move to a lower altitude, because I was diagnosed severe. I was still working full time and I said, “Well, you going to buy my house and find me a new job?” So I stayed.
I moved to Chicago in 2019 to take care of my mom, who just turned 99. I was here for a visit in 2018 and said, “I think mom needs more help than she’s telling us.” About three months after I got here, I could tell a significant difference in my PH. I went from being on six liters at rest in Colorado and eight to 10 liters of oxygen with activity. Here, in Chicago, I’m at three liters at rest and four liters, five if I’m carrying something, but I’ve never gone over five since I’m in Chicago. So I definitely can feel the improvement from that perspective.
We’re still working on which medications would be the best for me, because I’ve had some really bad reactions to a few of them that other people have had no problems with. That’s another big thing with PH and the medications, we all react differently and what works great for one person doesn’t necessarily work right for somebody else. So talking to my doctor regularly and seeing him regularly is how we then choose, and I do mean we, because I work with the doctor. I believe I am responsible for my health, to figure out which medicines to try.
After I came here to Chicago, the doctors I was seeing here in Chicago were one of the ones that sponsored a PH group, and eventually the nurse practitioner who was running the group had asked me if I would do it. That’s how I really became much more involved with the Pulmonary Hypertension Association. As a result, I have become aware of many of the other PH groups that are out there helping. I think that’s another thing that’s important is to know that there’s more than one place. So if one place doesn’t seem to fit the bill for somebody, reach out to other ones. If they call the support line for pulmonary hypertension, I know I will even tell them about other ones where they may have more interaction. But I definitely do think that everybody should join a support group.
It is a rare disease and we don’t always realize just how rare. I know sometimes I’ve said to my mother, “I’m so involved in it that to me it seems like everybody’s got it.” Then, the doctor I was seeing in Chicago closed the local practice that was nearby, because they only had five patients, and I had to go out to one of their suburban offices, which I had no problem with. Now, they’re closing that one. So they had referred me to Northwestern and that’s the doctor I’m now seeing. So he’s doing a lot of baseline work again. I know there will be changes coming for me, changes in medication, because there’s new ones out there. Many of the medications that we have available today did not even exist when I was diagnosed.
My path was probably a little bit different in that I was being treated for cancer. I had a reaction to heparin and develop blood clots. I was in the hospital, they were going to amputate my left arm at the shoulder. They called my family out, because they didn’t think I was going to make it through until the morning. Here we are in 2024, that was in 2001. It took a few years and I knew I was having breathing problems, which I have found is pretty common. The pulmonologist I was seeing at the time just kept saying, “Lose weight.” That’s always the first answer that I think any of us get that are even a little bit overweight. I did lose 40 pounds and my breathing was getting worse. I finally said to my primary doctor, “I don’t get it. At 40 pounds, I know I’m not where I’m supposed to be, but shouldn’t it at least be the same or if not a little bit better, not worse?” I literally had a hard time moving around in the house even I was breathing so hard.
My mother was out for a visit and she was sitting upstairs, I had a split level, and she said she could hear me trying to breathe upstairs from me being downstairs. At that point, my primary doctor is the one who then sent me to the University of Colorado Hospital where they did the right heart catheterization, which is the gold standard for determining if you have pulmonary hypertension. I did the right heart cath, came back and was diagnosed as severe. They can’t say for sure exactly what was the cause, because of the time length between when I had the blood clots and when I was finally diagnosed with the pulmonary arterial hypertension.
I had some very strong reactions to the medications that they gave me, so it was not unusual when they tried me on a new medication to keep me in the doctor’s office until they felt I was stable enough to drive back home. Sometimes that took hours. Thankfully, I have been on some stable medications for some time. Probably my biggest issue has been trying some of the other medications and having some very severe reactions and having to come off of some of them pretty quickly.
That’s one thing I can identify with along with a lot of other patients and it’s that kind of thing that led me to looking into PH more. I didn’t do that right at the beginning. I really was trusting and talking with my doctors in Colorado, so I didn’t do a lot of looking into support groups and PH, the different groups that are out there. I did that more after I came to Chicago, so that was many years after being diagnosed. At that point I realized just how much those groups could have helped me early on.
That’s one of the reasons I started volunteering with the Pulmonary Hypertension Association. I also belong to the myPHteam, just trying to reach out to as many people, because I still find to this day the support is very important for me personally. I believe that that’s true for anybody that’s going through this, because it changes and what medicine you’re taking one day you might find you have a response to it that you didn’t expect. That’s okay, they can change the medications. Staying calm and staying focused and writing down your questions for your doctor are all things that are really critical for getting the health that I need.
The number one call we get is looking for assistance in paying for medication. By far, that is the highest number of calls. Come January, we all have to reapply for our grants, because this medication is very expensive for most of it. There are a number of grants out there and when you call the support line, we can tell you which ones are open, which ones are doing funding right now, and in January, like I said, we all have to reapply and it gets really crazy. It takes a while for these different organizations. They have to get their money in, they have to review all of those, so it takes a while and people do get panicky whether they’re going to get their funding again. Very honestly, many of us cannot afford to take the medication if we don’t get those funds. I actually had the experience one year where my funding did not come through and I was without my medication for two months. It was significant. I mean, I could definitely tell the difference in my health. There were a lot of things I physically could not do while I did not have that medication to help me breathe better.
The second most common call that we get is people who have just been diagnosed and are literally panicking because they Google it. It depends on what site you get to when you Google. Most of the sites still will even as of today tell you that the outlook is a max of 10 years once you’ve been diagnosed, that the mortality rate is still only about 10 years. That is absolutely not true, as I can tell you from having been diagnosed in 2007 and it’s now 2024. I am still very active and going. I was talking to someone the other day who is 31 years since they’ve been diagnosed.
One of the things we try to remind people is those are all numbers, and numbers can be spun for different things for different reasons. Don’t look at that because none of us have an expiration date on the bottom of our foot. Nobody can tell us when that date is. Do what you can do and work with your doctor and reach out for help and support, because the mental part of this can also be very challenging.
I know for myself, there are days, if they’ve tried me on a new medicine, I’m not having a good reaction, I need to reach out and talk to other people who are living through this and say, “Did you have a problem with it? What kind of things did you do?” Especially if you have the subcutaneous type of medications. It’s not unusual to have a lot of soreness around the area where that’s attached to your body. Some people have had no problem with it, and some people like myself have had very serious problems with it. So, having people living through it with you, some of them made some really good suggestions for me as to things I could do to try and help with the site pain. Unfortunately, it still didn’t work for me. I had an allergic reaction to it, so all of those other things weren’t going to help, but that again, is where talking to each other is probably the biggest help.
Probably the third type of call then we get is, “Where can I find a PH doctor?” You need to have a pulmonary hypertension specialist, not just a pulmonologist. I have nothing against pulmonologists, I love them, I have one that oversees my sleep apnea. It is a very specialized area, because it involves both your heart and lungs and you have to have somebody who specializes in it. We can help find those doctors for them. We know which sites have been accredited for the pulmonary arterial hypertension, so reaching out again to the support line with the Pulmonary Hypertension Association is just a really great place to know that you’re getting the right doctors for the right care. Some of the other groups that I belong to are really good for emotional support questions, but I haven’t found any of those that have the same level of information for the accredited centers and that.
I am a Googler. I am the first to admit somebody says something I don’t know, I’m on Google. I have found that especially when you have a rare disease, get to the association that supports that disease, because they will have information that you are not going to find in other places. They have information that you can trust. It’s already been reviewed, certified. It is a great place to start. It doesn’t mean it’s the only place. I definitely think that phaware and myPHteam are places that are there to help with other things and help give the general support that we need just for living with a rare disease.
If you’re listening, maybe this is your first time hearing about it, maybe you’ve heard about it before, but we’re not aware that there are many places to reach out to, regardless of how long you’ve been diagnosed, regardless of what experiences you’ve had, please reach out, because you can help somebody else and they maybe can help you.
This is Sue Liss, and I am aware that I’m rare.
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