Life Beyond Transplant

Posted by: 
Tiffany Rich

Organ donation is the best gift. I wouldn’t be here today without my selfless donor. Almost 4.5 years ago, I was given the gift of life of new lungs. Getting there was the struggle of waiting almost three years for those perfect lungs. Living life before transplant was difficult. I was poked and prodded every few weeks and I was in the hospital for the majority of the years that I was on the waiting list. Lung infection after lung infection, it became the most annoying and frustrating cycle. Although I was so sick, I never stopped living and being determined to make my dreams come true. While waiting, I was able to walk at graduation from college just six months before my double lung transplant. I honestly would have made someone carry me had I not been able to walk. I met my favorite person in the world, Taylor Swift. I started a Lungs4Tiff youtube channel to share my life while waiting and to spread awareness. Most of all, I met others just like me, people with cystic fibrosis, while waiting for transplant, whom have become some of my best friends. As the time rolled closer to the call, I got used to being sick and staying home with 24/7 oxygen. I would have one big outing a week to look forward to which kept me going every week. Then I found myself imagining life with new lungs.

Honestly, I did not know what to expect coming out of a double lung transplant other than the ability to breathe. I had a rough recovery since my donor had been in a car accident causing a few punctures on my donors’ lungs. Normally transplant centers will not transplant damaged lungs. However, these lungs had small enough punctures that they were able to patch up and place in me. All they could say was “They are a perfect match.” The ICU was where I had the most issues. I had to be intubated twice due to my new lungs needing more time to get settled into their new home. Due to the punctures, I kept most of my chest tubes in for 25 – 30 days in order to heal my new lungs. The side effects of the anti rejection drugs really got to me during the hospital stay and caused me to be very sassy (Sorry Stanford). After leaving the hospital on NYE of 2016, I was ready to recover and start living.

I started exercising with pulmonary rehab and learning my new regimen. When all of a sudden life had another curveball for me. Around late February, I woke up sharp pains when I was breathing and come to find out, I had another puncture in my left lung causing it to collapse. Funny thing was I didn’t even know it was collapsed since I felt like I could breathe and just was having a few pains. My doctors told me since I was so used to breathing at a low capacity, I didn’t see any difference. This was wild to me! I went through a 20 day hospital stay with a 5.5 hour VATS (Video Assisted Thoracic Surgery) procedure to staple up my punctures and get me back to recovery.

Once I felt better, recovery started. I don’t think I fully recovered for about a year after the VATS surgery. I did not work other than doing a CF podcast for the first three years. Honestly, I didn’t know a life without oxygen, breathing treatments, and being dependent on others. I finally had a life where I could actually start being the independent woman that I had always wanted to be, but I just didn’t know where to start. I was used to taking it day by day since I did not know what my future would hold and now all of sudden I could see my future for years to come because of my selfless donor.

After being stable for a long time, I had motivation to make myself proud and continue to make my donor proud. I felt the need for purpose and wanting to work but I never had a full-time job and never actually thought I would be able to do it. I was in this chapter of my life where I was stuck; healthy and no clue how to transition from  the “sick” chapter into a “healthy” one. So one day, I just told myself it was time to start looking and move on with my life after being stuck for so long. The scary part of that was actually doing it. I had a lot of thoughts in my head, would I be able to hold a full-time job, would I neglect my health, would it affect my progress that I had already made? What would happen? The truth is, there was no way of knowing. I needed to do this for myself and be happy. I took the leap and went to interviews and got a job that I absolutely love.

Fast forward to almost 2 years later, I am happy. I am proud. I am independent. I am breathing the best I have ever in my life. I am healthy. The scariness of becoming independent and transitioning from someone that needed assistance to do almost anything to now being able to do everything for myself, with the exception that I do need help with getting things at the top shelf #ShortGirlProblems, has been such a blessing. I have been sick during the past two years of working, but I always listen to my body since health always comes first. I was able to move out of my parents’ house and buy a condo. This was a huge step for me since I had never lived on my own in 31 years. Look at me now. I finally know what it is like to have a purpose, to breathe easy, and find the happiness in life because of my donor who registered to be an organ donor.

I am so proud of myself and know that so many people have had the same thoughts as me after transplant. It is so hard to transition from a CF pre-transplant life to a CF post-transplant life but I know if I can do it, so can others. I always keep my donor on my mind, advocate for organ donation and CF awareness, and keep myself moving forward with life with a positive outlook. Organ donation has given me a life that I never thought was possible and has given me hope to continue to live my life to the fullest. I am grateful everyday for each breath from my donor and the gift of life that they have given me.

 

Photo Credit-
Banner image: Kelly Boitano Photography
Photo #4: Russie Denay Photography

Help Others Live STRONGER and LONGER-

 

 

Tiffany was diagnosed with cystic fibrosis at birth in 1989. She received a double-lung transplant in November 2016. Since her transplant, she has been active and living life to the fullest with her new lungs. She has been advocating and helping the CF community through her YouTube channel LUNGS4TIFF and personal Instagram account @Tiffrich22. Tiffany loves Taylor Swift, make up, her friends and family, and Disney! 

 

 

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

 

***Please speak with your physician before making any changes to your CF management***

 

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