A Support System is Essential: Tracy Martinez

August 31,2020

Hello, my name is Tracy Martinez, I’m 46 years old and I have pulmonary arterial hypertension. I live in Inkster, Michigan with my husband and my mother-in-law (whom we take care of). I have two boys, age 20 and 23. They live together about an hour away.

My diagnosis has been a long journey. My PAH is secondary to scleroderma. I was officially diagnosed with both in 2005, but my symptoms started when I was 14. I have several other diagnoses, but we can focus on just the PAH.

My path has been long, heartbreaking at times, and quite the adventure. We moved back to Michigan last year after being in Arizona for the last 13 years, where my husband is from. Our move back was a huge decision, but being that I will end up needing a lung transplant in my future we came back here where all my family is located.

I have attempted to take several different medications for my PAH. The current medications that work for me are IV remodulin, opsumit and adempas. The IV remodulin is quite new to me. Previously I was on subq remodulin for about three and a half years. Since February, I have had non stop issues with subq. My body quit absorbing the medication and I was having to do site changes every other day. The pain was horrendous and I wasn’t getting the medication like I was supposed to, this caused me to be in bed a lot.

We decided to try the IV route, so on May 20th I was admitted to the hospital to get a hickman line put in. This is a lot more work as far as changing the meds and the dressing, but I am willing to try anything to put off the lung transplant for as long as possible. My husband is the lucky guy to do my dressing change weekly and he is pretty amazing.

The COVID-19 pandemic happened and it caused a disruption in my care. The procedures I needed were cancelled, as were my doctor appointments. My appointments were switched to virtual and that was nice. My husband took voluntary furlough from work because it was safer for me. This put us behind on bills, until the unemployment kicked in. Right now I shouldn’t leave the house unless I absolutely need to because I could get the virus and getting this could be a death sentence for me. My lungs are not good, I’m on oxygen 24/7, so any kind of respiratory virus could be deadly to me.

Being stuck in my house has really been depressing. I have suffered from depression and anxiety for a long time and being stuck in my house has really changed my mood. I have never thought about taking my life, but not being around people and going out is a big thing for me, as I am a social butterfly. I have taken up coloring in anxiety coloring books and they really do help I can’t wait to get back to normal, whatever our normal might be.

I am part of several online support groups, and they help. I don’t participate much, but I enjoy reading the posts. They are sad at the same time especially when someone dies. I would like to find a therapist who works with people who have several medical conditions to help me accept things as well.

My family support system is amazing, I can honestly say I’m truly blessed. My husband is my life savior, and without him I truly believe I wouldn’t be here anymore. He never judges me when I can’t do something. He works and takes care of so much for me. Even raising our boys, he did so much, and is an amazing dad. My mother-in-law lives with us and she is a blessing as well. My family would be here at the drop of a dime if I needed them to be, and my boys are also my life. I really am truly blessed and so grateful for everything I have. A support system is something that is essential.

I hope for a cure someday. I also am hopeful for other treatment in case my medication regimen needs to change, as I have no other options. My team of doctors, my family, and my friends are my blessings and I am grateful for them. I am grateful to the Team PHenomenal Hope Unmet Needs Patient Impact Fund for helping me out financially as this was a huge burden lifted. Thank you for reading my story. God Bless!

Tracy received COVID-19 relief funds from the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.

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