Jennifer Gavilanes

Hello everyone!

I would like to start off by thanking GOD and my DONOR.

My name is Jennifer, and I am 42 years old. 

Growing up with Cystic Fibrosis was different than I would have liked it to be. Always taking medicine when I wanted to be outside playing with my friends. Medicine to help me breathe, to help me gain weight sometimes antibiotics you know the usual. It wouldn’t have been so bad if it was just once a day. It was 3-4 times a day…and that was just to help me breathe. 

They say it’s like breathing through a straw every minute of the day. Well, it’s true. Laughing, playing tag with my friends and just having fun without coughing was what I couldn’t wait for. 

Always having to take medicine in your food in front of your friends was embarrassing, especially when they would ask what I was doing. they thought it was gross, however they weren’t wrong. So many medicines on a daily basis. 

So not only having to take pills and breathing treatments knowing that I’m sick…Middle School was Middle School and High School was High School. It wasn’t until I came back from the Army that I got sicker. Yup, I enlisted in the Army. I always wanted to join the Military after my Grandpa. While I was in Boot Camp, I always got coughing fits which was normal however I was coughing so much more. long story short I came home.

I met my husband Juan in 2004. While we were dating, I started to get more infections and had to be hospitalized. Now I had to tell him I had a Disease. It was called Cystic Fibrosis. He didn’t mind but he also didn’t know what it was and how CF would change our life’s. We are blessed with a beautiful daughter and fortunately she is just a carrier. You see when anyone with CF has a child, they become a carrier. You pray that your partner isn’t a carrier because it increases the chances of your child having CF. Disclaimer: Juan isn’t a carrier. 

I got a Feeding tube in 2017 because i wasn’t gaining any weight. It’s hard gain weight when you have CF. Little do we know that it was the start of a downhill battle.

Fast forward to 2018:

Nancy is in 8th grade and Juan is working. With everyone being used to me always being in the hospital for 2 weeks at a time because of infections…things were going good until…I started to use oxygen. That’s when my family and I started to get a little concerned, but I was optimistic and knew it’s normal for a person with CF to eventually need oxygen. I told them not to worry, this is normal and I’m fine. During this time new medicines were coming out for CF patients, but I didn’t qualify because of my CF gene.

It started off with using a sleep apnea type machine when I slept. Just at night no big deal. After that, I started using the portable oxygen and started off at 2 liters. 2 months went by and I had to use 4 liters. I was sooo embarrassed. People looked at me different and felt sorry for me. I didn’t want to leave the house, but I had things to do. I overcame the embarrassment of the oxygen tube in my nose and went on with life. A couple months went by and now I’m at 8 liters. Dang that was fast. Totally unexpected. I no longer could use the portable oxygen that I put in a backpack and had to switch to the tanks. Now I was getting tired and I had little energy to do or go anywhere. But still life goes on and the family needs to be taken care of. 

With the help of my family, I was able to get the big things done. Although I was stubborn and said I didn’t need help because I was still able to do things. Which I was, it would just take me longer. One thing I will never get over is that fact that I had to have my daughter help me with my oxygen tank when I would pick her up from school. No child should have to see their parent dying because let’s face it I was. Though this happened years ago it still make me cry like I am right now writing this. It’s very emotional and this is only the beginning.

During this time I am babysitting my nephew and helping my family. Why you ask because 1) I love them and 2) because they were keeping me alive. Keeping me alive because I had no time to think about being sick. Now I am still on oxygen but it’s not portable it’s not 8 liters and it’s not tanks. It’s 12 liters and it’s a big blue oxygen machine. Oh man was I ever sooo tired. I had to plan out where I wanted to go and what I need to get before I got out of bed or off the couch. There was no way I was doing two things at once. It was either one or the other. 

I had so much help, and I am eternally grateful, but my pride would not let me except help. I had to do things myself otherwise, I felt like a failure. I hated asking people for help. I COULD DO IT MYSELF! I remember the last year I was on Oxygen,  we went to Laughlin and I told my husband that I didn’t want to go. I told him to go have fun with Nancy and ride the See-Doos we had. I told him to take her because I wanted him to distract her. I was always sleeping so i wouldn’t be much fun anyway. Juan told me “no we’re not going without you. I don’t care what it takes. We all are going to go have fun together. You are going to go have fun.” So we all went and we had fun. He bought a generator to support the oxygen machine that I had. He did everything for me so that I can go and have fun. Honestly I had a blast! I’m not sure if he knew I was leaving this earth but nonetheless he didn’t let me think about it. That was July 2018.

Now we are in October 2018. We have a wedding to go to and I’m trying to look my best. Having no energy and feeling self-conscious about myself and the way I looked, I worked my magic off we went too the wedding. We had to take 2 tanks at this point. 1 tank would only last 2 - 2 1/2 hours. I wanted to have a good time so we took extra. 2 hours go by and not paying attention to the tank I start to feel like I can’t breathe. I tell Juan I can’t breathe that well, so he checks the tank. He tells me it’s out. When I tell you I had to pretend to be a lion…I had to PRETEND TO BE A LION and slow down my breathing. He ran to the car to switch the tank out. I got sick a couple days after the wedding so I checked myself in to the hospital for my normal 2-week stay.

Thirteen days later…October 26th, Juan would get a call from the hospital telling him that he should go to the hospital now that I wasn’t doing good. I was ready to go on life support and in dire need for a Double Lung transplant.

Juan was used to me going into the hospital even the ICU,(we all were) and then going to pick me up after my time was done. I was better and wanted to go shopping. That’s my thing after I get out of the hospital. Being in 4 walls for days on end makes you think about things. Ha ha.

He brought Nancy with him to the hospital because he had a feeling that something wasn’t right and his feeling didn’t fail him. When he got there my breathing was bad. My lungs had given up on me. They had me on a bi-pap machine that give a lot of oxygen at a time. At that time a priest came by and all of my hospital friends were crying. Juan said it wasn’t time for the Priest yet. The doctors told him that they are going to have to put me on life support and that he should sign the papers. Juan just wanted the doctor to do what he had to do to save my life. When you go on life support there really is no coming back unless there is a Miracle. Just as Juan was getting ready to sign the paperwork for life support Juan got a call from UNOS. (United Network of Organ Sharing) and they said “We have a Birthday Present for your wife.”

The doctor that was waiting for Juan to sign the Life Support papers asked who was on the phone because Juan’s shocked face was showing. Juan told the doctor that it was UNOS and they had a match for lungs for me.

Everyone was so happy. Juan still had to sign paperwork but now it was different paperwork. 

On October 27th, 2018 I had my Double Lung Transplant. I can honestly tell you that it was all surreal for the first 2 months. It played mind games with me. I didn’t know what to believe. Not being able to breathe for what felt like the longest time to breathing like if I was never sick. I didn’t even know how to cough for a little while. Knowing that I was dying to now planning for the future. I mean now what do I do?

Living with CF I was constantly in the hospital, it's not a life anyone should live. Although the hospital staff members become family, it’s not the same as being home.  I love my family members from the hospital, but I want to see them outside of the hospital not inside. I wanted to be normal and by normal I meant not sick. However, that is the life that has been given to me and I accept it. 

I have met so many wonderful and courageous people with CF. People who have become friends and family. Some of whom have passed. I miss them and talking to them. I wish they got the chance to take the new meds that are out and the new technology.

Well since my Double Lung Transplant, I have done many things. The most important is making memories with my family. Celebrating life. Not taking it for granted and not getting mad at the little things. I am so great full that I now get to do things that I thought I would never do. I get to laugh again. Laugh without coughing. 

Not every story has a happy ending like mine, so I want you to take a moment and think about all the people who didn’t get the second chance of a lung transplant or the second chance of getting this new medication. Some of my friends with CF that have passed, didn’t get a chance to laugh without coughing, didn’t get a chance to see their kids grow up, didn’t get a chance to have their next birthday with their family. 

Those are the people I want you to think about donating to this cause isn’t just giving money. It’s actually getting money to help make a medicine that won’t let people suffer,  that won’t take people away from their families. 

If you do decide to donate, just know that your money is going to be spent on something life changing. From the bottom of my heart, THANK YOU for taking the time to read this and your donation.

Truly ~ Jennifer Gavilanes