My Transplant Story: Madison Brenton

September 19,2017

My name is Madison. I am 23 years old with two beautiful children, Adilene who is almost five years old and Brenton who is three. My support system is incredible, starting with my amazing parents who have fought with me every step of the way, to my best friends who at a moments notice fly out when they know I need them, to my awesome community who all volunteer their time and talents to assist with whatever my family needs.

I was diagnosed with PAH June 1, 2016. My PH is consequential due to my PVOD (pulmonary veno occlusive disease) which is an extremely rare disease. About an estimated 1-2 people per 10 million have this worldwide. It is guessed that my onset happened in the last trimester of my pregnancy with my son (June 2014) because I was passing out quite a bit and had a difficult time breathing (not related to the pregnancy though).

I was treated now for about a year but, unfortunately, PAH medications work against PVOD and make it worse. I was placed on the transplant list on March 1, 2017. I got the call at 10:52 pm April 27, 2017. “Hi, is Madison there?” After confirming my identity, the coordinator from the Cleveland Clinic continued.. “I have Dr. Budev on the line we have some information for you.” Trying not to get my hopes up, as I had done so many times already, I told my friend to run up and find my mom. I ended up screaming for her because out of panic my friend could not locate her even though she was just upstairs in her room!

With the doctors on speaker, my mom and I on the stairs and my friend Hannah across the way leaning up against the wall, “We have the perfect set of lungs for you. They are considered increased risk but we legally have to say this. However, the risk of this effecting you is barely 1%.” After discussing the other personal details of the case, etc, I asked if they could give me about 30 minutes to collect myself. I made some phone calls, as did my mom, we had a plan previously set in place for when this would happen.

I called back. They told me they needed me there by 3 a.m. Our people came, we packed, and honestly things didn’t feel panicky or scary or rushed. We were ourselves, cracking jokes, at ease and focused on what everyone needed to do. Not until I had to say goodbye to my kids did things change. This was probably the hardest thing I had to do and most likely will ever have to do in my life, saying goodbye to my babies before THE biggest surgery of my life. Once we got to the clinic and I got all settled in, gown on, IV’s in place, monitors connected, the whole ordeal. It started to feel real and I was terrified. This was either the beginning of my new life, or, the end of my life.

So, I enjoyed the remaining hours with my mom, dad, little brother, and excellent friend Hannah. Soon, they were ready for me however I definitely wasn’t ready for them. Saying goodbye once wasn’t enough, again, I can’t think of anything harder than saying goodbye to family. It makes my heart hurt just re-living this. As they began pushing me to the operating room I just started praying non-stop that I’d pull through because the people I’ve left behind need me.

My surgery was to end at 4 pm. But, they finally brought me out around 7 pm and my family was allowed to see me at 9 pm. When they opened me up they said my lungs had completely fused themselves to my chest cavity and they had to carefully scrape them off. Then they could proceed with the transplant and my tricuspid valve repair in my heart due to the PAH damage. It was a long and extremely painful road BUT let me make it clear, it was and is worth it because the pain from this was “good pain”. Let me explain, when I was sick I was always in pain and it meant I was dying and it was never going to end—I was suffering. Transplant pain means it’s because you’re healing, your pain WILL go away, you’re not sick and suffering anymore. As long as you focus on that and you focus on the “bigger picture” you’ll be fine and get through it.

Once I was able to leave the ICU, it was day two in my step down unit, and all of a sudden I realized I hadn’t had my O2 on for a very long time. I no longer needed that leash! Ever since then I have never needed that annoying thing! I am 98-100% on room air! I am forever grateful to my donor and her family. At 6 months I can reach out to thank them. I cannot wait to thank them for choosing donation in the middle of their tragedy, I want to let them know that in their loved ones death they gave a young mother new life and two young children a chance to have their mother for the rest of their lives.

Since my surgery, I have focused on recovery, such as strengthening and reversing the effects of muscle atrophy from years of inactivity and the hospital. Of course I have spent every day loving my kids and doing as much as I can with them. The more lung function I gain the more I am blessed to do so. Such as, the zoo/aquarium, Cedar Point and its water park, a ton of your usual parks, riding our bikes and many more activities! I also like to just hang out with family. My kids and I also like to get together with other friends as well and do what is around our community.

I am living life again with new lungs and also new drug therapy that I will continue the rest of my life but it is so worth it compared to life prior to transplant. It involves anti rejection meds and many supplements to help maintain the body because the anti reject meds are hard on the rest of the body, particularly the kidneys and the liver. But, this monster is easier to handle than the 2 I was fighting before. The one that had no cure or treatments and killing me very quickly, and the other that was making the 1st one worst and also killing me slowly.

There are other limitations for transplant but they are just lifestyle changes to protect you and they’re easy and they are worth it. Transplant has so much research and funding going into this and my life was ending very quickly and it was a very easy decision for me. Dr. Lane here at the Clinic also said something that will stick with me that helped make the decision easier to sit with… “When we look at candidates for transplant we look to see if their quality of life is better with transplant or better with continuing to manage their disease(s).”

For me, I had obviously hit the point where managing diseases was not an option anymore. I am blessed with my miracle because truly that is what it is. We are all doing well! My parents got their daughter back and my little brother got his big sister back. My family doesn’t have to worry about loosing me or burying me anymore. They get to watch me enjoy life again and live it fully. My parents love watching me be a mom again, especially knowing that it is something I have always loved doing. I even got into a new house where I am living with my two kiddos! My daughter is starting kindergarten this year and I am not ready! My son just started preschool! How do kids grow up so fast? I do not know. But, life is good and I am blessed abundantly.

Please if anyone is going through the possibility or are listed and need someone to bounce questions off or are scared please reach out— I’ve been there and I love to help others. You can find me on Facebook. Either message me on my COTA Facebook page (COTA Team Fundraising for for Madison B.) or on my personal page.

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