Sep 24, 2024
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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