Advocating for Myself with Family Firmly by My Side

Advocating for Myself with Family Firmly by My Side

I was 28, had a one-and-a-half-year-old son and an amazing husband. My whole life was in front of me. But then I received the news – a terminal diagnosis.

Doctors told me I would be on an IV for the rest of my life and would need a lung transplant but that I was going to be taken care of. I vividly remember saying, “I don’t think I can do this. I can’t go through this.” The doctor said, “Yes you can. You can with God’s guidance, my help and your family standing behind you; you can do it. You can get through anything.”
He was right.

But it hasn’t been easy.

The diagnosis was Pulmonary Hypertension after months and months of doctors telling me it was asthma or even a congenital heart defect.

My mistake was I didn’t listen to what my body was telling me. It was telling me it wasn’t working. It told me that it wasn’t asthma, that the medication my doctor gave me wasn’t working. My body was continuously breaking down, and I didn’t listen.

It was by the glory of God that my gall bladder started acting up. If that hadn’t happened I would be a statistic that dies in three years from not being treated or diagnosed.

It was critical that I eventually trusted my gut and stood up for myself saying, “Something is really wrong here.”
Just a year after the diagnosis I went through more medical trials. I was in a hospital bed at 29 with a two year old at home who needed me, and I was undergoing a work up for a transplant having conversations about “quality versus quantity of life.”

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There were countless doctors’ visits with my mom by my side. I remember leaving one; I just broke down crying hysterically saying statistics say new lungs would be wasted on me. My doctor comforted me saying he would do whatever he had to do get the lungs I needed but that we should try first to get the lungs I have now to work better. A new medicine made all the difference. It saved my life.

I’ve always been an optimistic person but I now consider myself cautiously optimist. They took me off the transplant list, for now, and I’m doing OK. There are still plenty of physical struggles.

I can’t walk, even short distances, without breathing hard. I have major muscle pains in my legs and am short of breath with very little activity.
I can’t lift anything heavier than a gallon of milk; I can’t get down on my knees to scrub the floor or play with my son, things like that. My heart works as hard while I’m sleeping as someone running a marathon so my fatigue level is high. If I slept 24 hours a day I’d still be tired.

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Rachel, Shelia, Scot, Braydan, Dan, Shannon, Caitlin. (Wearing PH bracelets)

The pain, the heartache – it’s still there. But I’ve decided that life is too short. Every day is precious. I need to focus on what makes me and my family happy.

My faith in God through all of this has made me stronger. It has brought more out of me — being a better mother to my son, sister to my sisters and brother, child to my parents. I take the strength they give me. My husband, he’s an incredibly strong man who takes a lot of weight on his shoulders and doesn’t ever complain about it. I don’t know if the roles were reversed if I could do the same.

It’s true that with family and friends standing behind you that you can do anything and get through anything, even the unimaginable. This really has been an unforeseen blessing that I have PH.
I have a drive to make sure that people know that you don’t ever have to lose hope, even when it seems so bleak. If you get knocked down you have to get up and keep going. For me and this condition, they are making advances every day that make life a little bit better and easier.

I pray for more good days than bad days. And for those who may be facing a challenge, I pray that you find a great support system that can be around for those bad days when you need someone to read out a Bible verse or let you vent or cry when you need to cry and laugh when you need to laugh. In the beginning it was hard for me to laugh. How can you laugh when you have all these bad things going on? But that is what gets you through.

My future plans are to keep the lungs I’ve got as long as possible – could be the rest of my life or tomorrow. But I’m so grateful to be here. About 90 percent of the time people are diagnosed with PH it is done during an autopsy.
Would I take a cure for it right now – YES, absolutely, 100 percent! But it has made me appreciate what should be appreciated – my family and friends. I didn’t know if I’d be able to see my son start preschool when I first received the diagnosis. This year I saw him go off to his first day of second grade. Every day is amazing.

shannon3When people say, “How do you do it? How do you get through it?” I just say, “I have to. There is no other choice.” I guess I could lie down and be defeated by it or let it define me. But that’s not me. I can be me and still have PH. I can still be involved and have this. It is always here; it is just that I have a son to take care of, a household to take care of and family that needs and loves me.

Being my own advocate when it came to my health is a huge reason I am still here today. You know your body; you know what is and isn’t right. Those in the medical profession are amazing, but you are just one of hundreds of patients they have under their care. They cannot be the key advocate for your health – you must be.

It is important to know that you can, and should, stand up for yourself. You are allowed, and should, be asking questions. If something doesn’t feel right ask. If your fears or doubts or gut instincts are being ignored, find someone different.

– Shannon Martin

 PH