Esen’s Story
My journey began in September 1998 when I was diagnosed with PPH (Primary Pulmonary Hypertension). When I was first informed about my illness, I was relived because I had always known there was something wrong with me.
I was told in such a cruel way though. I had just started working in a law firm as a secretary and it was only my third day, but I had a hospital appointment in the afternoon so I took the afternoon off. I wasn’t going to go but something that day made me! I met my mum outside the hospital and we went in. The doctor asked me about my symptoms, which included fainting, blue lips, palpitations, and always finding it hard to catch my breath. He said he wanted an ECHO so I went into the next room and had to take off my top and bra. I felt scared because they didn’t let my mum in to be with me. The nurse put a cold jelly on my chest and did the examination.
We waited another hour before the doctor told us that I would need a transplant. I was given the name of the illness but no explanation as to what it was or anything, just that it was very rare. Then I was taken into another room where there were loads of student doctors, as the doctor thought they should listen to my heart and lungs to learn. I was in shock, I felt sick, and now I was being prodded like a guinea pig. Finally, I just burst into tears, but they kept on listening. It was one of the hardest days of my life.
I was admitted and then sent onto Papworth Hospital in Cambridge, England, where I got the best care. I came to understand my illness and realize it was now a part of me and we had to live together.
But I knew I would beat it.
I was put on the transplant list in June 2002 (during the World Cup!). My PH doctor, Joanna, was the first to mention the transplant waiting list to my family and me when I was about 22 years old. The doctors estimated that I would have to wait for 1 to 2 years, and maybe even more. I didn’t want to be negative about it. Instead, I wanted to keep a positive outlook on things, so I really didn’t listen to the doctor when he was saying all the bad stuff. I thought, “No, I’m going to get better!” And in nine months my time came! I had a heart and double lung transplant on March 18, 2003.
I spent a week with my transplant team early on in the process. I had tests; from blood 
tests to echoes to x-rays. They explained to me everything that I should expect about having such a big operation, including taking medication and all the possible side effects. What I remember most was one of the nurses saying to me that I would get facial hair and asking if I would be okay with that. My reply to her was that that would be a simple problem compared to the ones I have now. I also saw a psychologist to help me with my fears about the transplant and everything else I was worried about.
My family was my rock during this difficult time, especially my mum! She was, and still is my rock! My friends kept their distances. I think they were scared that they were going to lose me so they chose to bury their heads in the sand. The only support I got from the hospital was from the PH team and from a Macmillan nurse by the name of Sarah. I remember telling her that “this PH will never beat me, I will fight it until the end and beat it!” My mum always said to me, “if God gave this illness to you, he also [will give] you a cure!”
What gave me hope in the midst of my journey with PPH was meeting my husband to be in 1999! He gave me hope when I thought no one would want an ill person or someone who might die soon. But he loved me unconditionally and didn’t listen to those who were telling him to forget me. He fought for me and I fought my illness.
It was St. Patrick’s’ Day, March 17th, when I got the call. I was in my room, as I was bedridden, and watching my favorite soap, “Eastenders” and I remember my grandmother coming to my room with the phone and saying that a nice man was on the line. I didn’t think anything of it because I thought my fiancé was calling. I realized it wasn’t him, but instead my transplant coordinator, Steven. He asked if I would like to get my new heart and lungs, and I thought he was joking and said, “But I’m busy watching TV!” (I guess it was the shock.) I had an hour to get ready, so my mum took me to the bath to bathe me and I remember all of my family being there and how hard it was saying goodbye because it might have been the last time I was going to see them.
I was being brave, but my emotions were all over the place. I was happy, scared, sad, sick and tearful. I felt sad that someone out there was dying to save me but I tried not to think about this too much because it was very hard to deal with on top of everything that was happening. After my transplant, I wrote the family a letter to tell them that I was doing well and how their loved one saved me and gave me back a normal life. To me, they will always be my angels who were put on this earth to save me, and who I’m grateful for each extra day I have with my loved ones.
My life has changed forever! The transplant gave me back my life. It was like I was reborn. Before the transplant I was in a wheelchair, and on 24-hour oxygen and I needed help with dressing or bathing. I came home from the hospital a month after my transplant, and it took me quite a while to adjust to doing things for myself again. I was apprehensive of everything. I was scared that I would get ill again. I felt alive, yet guilty of it. I didn’t feel the need for oxygen but still wanted to use my wheelchair but my mum put it away! I was doing exercises the physiotherapist gave me which helped me to gain my strength back.
Today, 9 years after the transplant, my life is a happy one. I’ve been happily married since 2004. I don’t want to paint a picture of a perfect life after a transplant because it’s hard with all the medications’ side effects. They consisted of putting on weight and getting excess hair on your face and body. You get an appetite so be careful! I put on so much weight and had to lose it all! Two other side effects include very bad shakes and a puffy face from the steroids. I could always tell when someone is on steroids because my own face was the same! It may not be perfect, but when I think back to how I was before, I wouldn’t change anything.
It took me over a year to fully recover from the transplant. The first year I got CMV (Cytomegalovirus) and I was scared I made a big mistake in having the transplant. But once I recovered from that, everything got better and I got used to the medication (much simpler than the ones from PH) that I had took just twice a day!
The advice I would give to people who have been diagnosed with PPH would be: Be strong. Be brave. Laugh at yourself! Make fun of the PH, that’s what my mum and me did. And still do! There were days that I just wanted to give up to die and be done with it, but that feeling never lasted long! I think I’m the sort of person who cannot stay depressed for too long. I find happiness in the smallest things. Like I love opening a new jar of Nutella the most! Also, I think my family and husband help make me who I am. They give me the strength and love I need. My faith helps me too. Praying and believing in your dreams is vital to helping a person get through obstacles. To me, it doesn’t matter what religion you believe in, just that the power of belief is stronger than anything is possible. I think (and it might sound wrong to others) that everything happens for a reason and that you must always look for the good in that reason, in order to go on with life.
On the night of March 17, 2003, an angel saved me. I’m forever grateful to you. You gave me back a life I never thought I would see. I live each day a happy one with the people I love.
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5 Responses to Esen’s Story
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i just love your story. i was dignosed in oct 2008 with pulmonary hypertention. my health goes up and down. just a couple of weeks ago i was placed on the transplant list for heart and double lung. i am excited to get a second chance to live my life to the fullest and not hold back because i cant breathe. my husband and my three girls (and the rest of my family) mean the everything to me. i will be praying for you for continued health.
you are amazing with such a positive attitude. i too, have PAH, and have lived with it for the last 10 years. i take my medications and take one day at a time. because of my faith, i realize i have PAH, it doesn’t have me. bless you …
I just want to say that story is truly amazing and inspiring! I was diagnosed with pph in november of 2010 at age 27 and it is a battle everyday and it can definetly wear you down and make u wanna just give up! So hearing a story like this and knowing someone out there is going through the same thing I am if not worse and is strong and fighting every second to live a normal life makes me want to be stonger and fight even harder no matter what it takes! So thank you for sharing your amazing battle with this condition and I wish you the best in life! God bless you and your family!
What a great attitude & great story! I too have PH & hope my outcome is as good as yours! Hugs!
I to have PAH I was diag. in 2007 I take my meds and do the best I can each dsy. I do have ups and downs but who doesn’t. I thank CVC for all they do for me. The stories are great. God bless all!!