Heart Transplants and Heart Tattoos

So I've probably never told you, or more like, I know I've never told you, that I'm a transplant patient.
When I was 11 years old I was diagnosed with severe dialated cardiomyopathy which basically meant that my heart had grown to almost the size of my ribcage and didn't pump blood very well anymore.
I didn't have any pains, just a lot of arhythmia and I felt sick all the time (wanted to throw up constantly).

For the first few months I was in the children's hospital in Helsinki in the ICU (Intensive Care Unit) and then the heart ward and got heart medication from the start. I was put on the transplant list, but I was taken off of it, when I started to show signs of recovery. I was sent home with a large amount of medicine to take and I felt slowly better again. I wasn't allowed to participate in gym or anything of the sort, I wasn't even allowed to go to school with the bus, I had to take a taxi so I wouldn't strain myself and my heart.

However, in March 2002 my condition crashed. I got such a huge amount of arhythmia that day (maybe the 22nd, can't remember) that I mentioned it to my dad and off we went to the hospital. There they told me that my condition had gone down to where we started at 9 months earlier. So I was put on the transplant list again, as an urgent case. I dont' remember how long I waited, but it wasn't days or months, it was only a few hours and off I went into surgery. My parents were sent home and there they said they just walked around the dining room table waiting for the phone call to tell them I'm alright and have a new working heart now.

Of course, it's never quite that simple. They did get that phone call, I was alright, I was happy, in terrible pains and in a huge opiate cloud, but happy to be alive and happy to know that from now on I can live a normal life again.

Again, not quite that simple. Every day I have to take a large amount of medication to keep me alive. Some of them, only a small portion, is for antirejection (rejection is when my white blood cells attack my heart because it's not a perfect cellular match to my own cells and see it as a foreign object). The rest are for a number of other things: blood thinners so I don't get blood clots, blood pressure medicine, because the antirejection meds cause high blood pressure, and colesterol meds because again, the rejection meds can cause high colesterol levels.

Actually, I've been quite fine using these meds for the past 11½ years now, but hospitals and me don't get along anymore. Now I have anti-depressants for both depression and anxiety problems, anti-anxiety meds and as a backup, sedatives, because I've had such awful experiences in hospitals, and after so long of taking blood samples, my veins are non existent. I have had some wonderful times in hospitals as well - kind people treating me and giving me the feeling that they know what they're doing and really want to help me, so as a rule, I'm not complaining, but even the idea of having to go some strange ward in a strange hospital makes me cry. I am crying as I'm writing this.

I have had a small small tiny little rejection twice. Once right after the operation, which was ordinary, since they had to see what doses of meds to give me, and then after six years from the operation, and then they switched Sandimmun to Prograf. That made me very happy, because I hated Sandimmun with all my heart. It smelled dreadful and tasted even worse, and it caused both hair growth (everywhere) and enlarged gums. So I basically had no visible teeth and a nice big moustache. Never had a unibrow, but my eyebrows still go all the way to my hairline on the sides! Also I still do have a moustache. Jees I'm more hairy than most Finnish men! Thank goodness for razors.

Another medicine that gave me a lot of issues and a lot of self-confidence problems was cortison. I was a real example case of the worst possible visible side effects - I grew to a balloon in about a month without eating almost anything because I still felt sick after the operation. It was all water that was being stored in my body. That's the reason I have so many stretch marks all over my body. I was a huge hairy balloon from sixth grade all through to ninth grade when I sort of levelled to normal and then got a short lasting eating disorder. I was never skinny, I never lasted that long, but I did go from L to S in a short time period.

My transplant has given me a lot to think about over the years, and though I am and will always be so grateful that I am alive today, and that someone out there was kind enough to be donour before they died, and saved my life, I have gotten a lot of trouble from this as well. When I caught mono in winter 2009, I never would have thought that that virus (EBV: Epstein Barr Virus) would cause me a cancer. Last spring, in March actually, I was diagnosed with PTLD - post transplatic lymphoproliferative disease - which meant that I had B-cell lymphoma. Cancer in my lymph nodes.

Thankfully, the treatment I got was less harmfull for me than what chemo would've been, so I was lucky in that sense, but it's not yet sure if the cancer is all gone. Right now I am plagued with pain in my jawline which is caused by an enlarged lymph node (over a centimetre large!) and the results from my previous enteroscopy still showed signs of possible lymphoma so now I got a new enteroscopy and will hear about the results hopefully next week.

Maybe now it is sort of clear what has happened in my life and why I am on anti-depressants, which I should have been on for years already. I just refused to believe I was depressed, though I thought about suicide more than once. More than a hundred times I suppose. I knew I could never do it, because of my dad, I couldn't leave him lonely, with a dead wife and a dead daughter, and two very difficult dogs.

I am a survivor. So is my dad. So was my mother as well after her first cancer. We're all survivors and I will do whatever it takes to stay on this planet. In this world. But it's not always easy, it's not always simple, and most of the time, it's really painful. 

Hopefully this clears up somethings that I'm sure some of you at least have wondered about if you have read my introduction, or know me in real life.


  1. Okay, this was such an impact-making post to read in so many ways and I want to express something to you but don't know if I can find the words. I think (?) I just want to say that whenever you've been in my mind I never identify you as "Frankie, that person with the health problems." You're always "Frankie, the great person who's so fun to be around and who understands things." I know it's such a cliché thing to say that "you shouldn't let your health/any other problems define you", but still, I've just got to say that you, Frankie, have achieved this. That last paragraph made me cry too, but in a good way. My comment is getting so messy again, aaaagh.

    1. You know, your comment made me cry more than my post did. You've been such a good and fun part of my life for the last three and a half years (long time) and I've seen you way less than I should've, and it I can't really express my gratitude for those kind words. Thank you <3