I'm Aware That I'm Rare: Christine Kramer


Pulmonary Hypertension patient Christine Kramer discusses developing PH during pregnancy, motherhood, clinical trials &the importance of self-advocacy.

Transcript:

Hi, my name’s Christine Kramer. I live in Arvada, Colorado. I’ve been diagnosed with PH for the past 12 years.

I was feeling dizzy and faint. And I’m like, “Well, I was just running yesterday.” I couldn’t run. I couldn’t get my stride, and I just couldn’t breathe and I was just really, really dizzy. And so I made a doctor’s appointment and I went in and they ran a bunch of tests, and they’re like, “Not to scare you or anything, but you have the signs of having pulmonary hypertension due to pregnancy.”

Well, the doctors were telling me my results and telling me what was going on with my body, and they said in my case, with pregnancy, they died during childbirth. So, my survival rate really wasn’t great. And I asked the doctors, “If I do not terminate, what’s my son’s survival rate?” And they stated, “100 percent.” And I’m like, “Done. He’s my baby. I love him.” There’s no way I was going terminate.

During the delivery, I don’t remember much of it, they wanted him out and he was born early, because it got so bad that they’re like, “You’re getting worse.” The best doctor had agreed to see me, and that’s my current doctor, Dr. David Badesch. I was told that he was the best and I’m glad I did, because Dr. Badesch literally saved my life. Because I wasn’t living. I was literally not living.

When I first met Dr. Badesch, I was on zero therapy except oxygen. He goes through this series of tests, the right heart catheterization and just everything to cover their bases to make sure this is PH. So, after going through their testing, he wanted me on what I’m currently on, which is an IV, however I wanted to start orally, but they didn’t have as many oral treatments 12 years ago. They had two. And I did quite well with that for a year and then I started declining. I was getting dizzy more and it was a really, really, really hard time. I couldn’t keep up with my son.

So, they put me on a trial of a new medication that came out. And I was on that trial, and that was great. It gave me a whole new lease on life. I did great on this trial. And I’ve been asked to do other trials, and I have done them. However, the one with Dr. Badesch is the one that helped save my life as well, so I didn’t get the placebo, thank goodness. So, I was really, really lucky. And I recommend every PH patient to try a trial, because it could save your life.

And I wanted to be in the trial because I wanted to help other people. That’s just my nature. And I knew if it didn’t work for me, maybe my symptoms would help move somebody else. It’s only going help with the research and finding a cure someday and finding out what does work. So, I think every PH patient, if asked to do a trial, should definitely do it.

I’ve been on the pump for nine years. And it’s helped quite a bit. I’ve switched pump medications. So, this one, the medication I’m on now gives me more freedom. That’s great. I’ve asked my doctor about treatments all the time, with the new treatments coming out, and my biggest worry is that he’s not letting me transfer right now onto an oral. It’s on the table. However, he wants to wait a while. But every time I go in for a right heart catheterization or an echo, everything gets better, my pressures are better. And I understand where he’s coming from as a doctor, because I’m doing so well and everything is going better, like my heart function, my pressures. But that’s just me wanting to prove to him that I can handle this change.

And that’s why I want to get on the oral so badly. And as a patient, I think you need to advocate for yourself, and if I didn’t advocate for this other pump medication, I wouldn’t have freedom, as much freedom as I do now, to where I can just go to Mexico and not have to worry about ice packs. But I had to advocate for that. And I think as a PH patient, you need to advocate. But he’s great and I understand that he wants me to wait.

Lifestyle-wise I think doctors should give patients the benefit of the doubt and let them at least try the medication before they say, “Well, just put it on the table.” Well, let’s take it off the table. Let’s try it. So just keep advocating for yourself and telling your doctor, “This is what I want,” and prove to them. If you need to go out and do a six-minute walk and prove your time and whatever you need to do to make your heart pressure, change your diet, do whatever, lose weight, whatever you need to do to prove to your doctors that you can handle whatever treatment comes your way, I think that’s what you need to do. And I’ve done everything that I’ve been asked and then some. You know? The medication’s still on the table.

I didn’t realize how strong of a person that I am. And it took my son and my husband for me to realize that. And you don’t realize, as a parent, what you miss out on and then what you want to see in life. And I know that what I want to see is my son graduate from college and medical school, if that’s what he chooses or, and if he decides to go down the computer route, I want to see him graduate and I want to see him get married. And I want to hold my grandbabies.

And I didn’t have the strength to feel that way until my husband and son, just there every day telling me how much they love me and they need me. And my son’s so great, thanks me every day for being his mommy. And there are days when I can’t be the perfect mom, and he still thanks me every day. He’s like, “Thank you for being my mommy,” and he’s 12. And pretty soon he’s going be a teenager and he’s going be like, “Ugh, here comes my mom,” but right now, I’m taking it like, “Aw,” you know?

And I have a husband who thanks me every day when he knows I’m not feeling well, but he comes home and dinner is made. So, I’m very blessed that I have a husband and son who gave me my strength back.

My name’s Christine Kramer, and I’m Aware That I’m Rare.

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