Michelle Sweitzer - phaware® interview 298

Nov 12, 2019

In this episode, pulmonary hypertension patient, Michelle Sweitzer discusses her illness and why she chose to adopt.

My name is Michelle Sweitzer. My connection to PH started many years ago. I had a brother that was diagnosed when he was almost five and passed away shortly after. At that time, there was no treatments or anything like that. Then 11 years later, my dad was diagnosed, and as a result, the rest of my brothers and I all got tested to see if we had the disease. I had another brother that at that time was asymptomatic, but diagnosed, and myself and another brother of mine were not. We were fine at that moment, but later came to find out that when they said it's not the gene, that we in fact had BMPR2. So, with that, came different things that we needed to do to try to help if there was a way to keep the PH from activating, so to speak, being the triggers. One of those was pregnancy.

So, when I got married in 1989, my husband and I decided that pregnancy wasn't something we really wanted to venture into since we knew that it could cause the PH to onset in my body. So, we looked into adoption. We started as foster parents and adopted our first son in 1992, and he's now 33 years old. Then throughout our marriage, we had other foster kids. When we moved to Washington, we ended up being blessed with another little boy at 18 months old. He is now 11.

In the meantime, I was actually diagnosed two years ago with the disease, not from pregnancy, but I don't know what the trigger could have been, maybe stress or hormone changes in my body, I don't know. With that, I had to retire from teaching, although I do homeschool our son. God has blessed me with the privilege of being able to go to different pharmaceutical companies with my mom and share our story and give them the human perspective of why they sell the drugs and why it's so important to allow us to have life and better quality and longevity. I'm so thankful for that purpose.

When I first started meeting people with PH, when my dad had it and we started getting involved in support groups and going to conferences and things like that, you end up meeting a lot of different people with PH. I kept hearing over and over again that there were women that that got it when they got pregnant. So, right away [it] set in my mind this idea, goodness gracious, that could be a trigger for me. That could cause me to have PH. It was actually quite an emotional thing I needed to battle with inside. I was young then. I wasn't married at the time, but I was thinking I would love children. I went into the field of teaching and I had a degree in child development.

To know that I wasn't able to actually bear children just in case that might possibly onset the disease was trying. It was tough. It led me through a lot of different times of having to just really be on my knees in prayer and just asking God why or what is it that I can do, obviously definitely moments of sadness. I kind of had to work through that loss of that idea that I couldn't do that. And that if I did what the repercussions would be, not necessarily even just me dying, because I knew where I was going to go, but that would be leaving my husband having to raise a child on his own. That was definitely not something that I wished on anybody.

Even though it was a difficult decision, it was a decision that I felt was the best. As I processed through it more and more, I realized there's a huge need out there for parents. There's a huge need for the kids that need a place to call home. They need a mother and a father [because they] don't have one. Or they don't have ones that are taking care of them properly. That was a need that we could fill. So, it actually gave me more hope and excitement knowing that, gosh, we could make a difference in these child's lives.

When you give birth, you don't have a choice of what child you have and I imagine it must be this amazing blessing of this child that God has blessed you with and as a part of yourself. But when you adopt or you foster kids who you actually are making that choice to take in a child and to give them love and to give them a family. [You] help them know, that regardless of their circumstances or what may have happened to them or what they're feeling, that there are people that do love them and are going to be there for them and help them through life. In a weird kind of way, it actually ended up being a huge joyous thing to be able to be foster parents and to adopt these two boys. It's a huge blessing even though it started off as a feeling of almost a curse, but it wasn't.

Now at this point, (I mean) it was only diagnosed two years ago, so there are so many medications out there. It's really a good time, per se, to be diagnosed, because there are so many different options out there. Whereas, if I had gotten pregnant earlier and had had the disease earlier, I don't know that I would have had that much hope at that point. There weren't that many choices of medication. In fact, when my dad was first diagnosed, there weren't any. There was just one that was experimental that he was able to get on. They gave him 13 years, which was awesome. But there was nothing for my youngest brother available at all. My middle brother, he caught the disease as a result of pneumonia. It onset and it hit too hard and there was nothing he could do. There weren't that many medications at that time either. I feel really thankful. I think it was the right decision, because I feel like I probably would have onset if I did get pregnant, which could have created all kinds of problems and not [be] as hopeful as it is now to have the disease.

Everybody has their own feelings about it. For some women, that's been their dream of to be a mom and wanting to have their own child. Most people that I've talked to haven't really grieved through that process of loss of not being able to have that. They're so overwhelmed, because they're newly diagnosed that they can't see beyond that loss.

I’ve tried to encourage them that with my story, just [to] say there are so many kids are out there, there's so many other possibilities. Yes it is a lot, but you could be helping so many other kids and your life could still be complete. You could have this child to have a complete family where you feel like you are a family, you have these children that you're able to love unconditionally and that love you back unconditionally. That that's still an option for you. I know other people that have also done this. They have adopted. It's been a process for them, but they're thankful too.

I know a gal that she was actually really young when she was diagnosed. When she got to getting married and then an age where she wanted to have kids, she was already diagnosed. [She] knew that wasn't something she wanted to do because it could have actually terminated her life with a baby. So, it wasn't even an issue for her, because she had all those years to process it. She just immediately went after she got married into the adoption process. Now she has two little boys she's adopted.

I think it's hard for some women to be able to let go of that dream of having your own child. I think when they do, look at a bigger picture and realize even though one dream might end, another one can begin. There are other doors that can be opened and other possibilities that your "traditional" family doesn't need to be a [naturally born] child. It could be one that you've adopted and still be an amazing family that way.

I know this disease is hard and I know that there are challenges. I know that it's sad that you're not able to give birth naturally to a child and that's okay. It's okay to feel loss and it's okay to be sad about that. But don't stay there. Don't stay in that spot. Try to look at a bigger picture and to make the most of your life, including children. If that's something that you and your husband decide, that’s something you want to do. The need is great and you can be extremely blessed by going down that route. Don't give up hope. There are other things that you can do in life that can help you to feel fulfilled.

My name is Michelle Sweitzer and I aware that I am rare.

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