IAmA survivor of a double-lung organ transplant and stage

4901

Hello, reddit! I recently joined reddit and I get a lot of questions about my situation IRL, so I thought maybe you guys would be interested too! I was born with a rare and terminal lung disease called Pulmonary Arterial Hypertension (PAH) and it eventually got bad enough that I needed to be listed for a double-lung transplant. After a year of waiting on the list, I received my transplant at the age of 14.

About 6 months after the transplant, I started having severe stomach and back pain. At first my doctors shrugged it off as medicine-related pain, but when it got so bad that I physically could not get out of bed, they decided to hospitalize me. While hospitalized, I learned I had stage 4 of a specialized kind of non-hodkin's lymphoma that only happens after organ transplants called Post-transplant lymphoproliferative disease (PTLD). I was 15 years old at the time of diagnosis.

I had to go to live in a different state for 8 months to receive my treatment due to there being no specialists in my state or even any of the states surrounding mine. As you can imagine, this was very difficult for me.

When I received my first chemo treatment, all seemed to go well. I lost my hair, however, that was something to be expected. But about a week after I got the treatment, I started having extreme stomach pain (again!). They thought it was nausea from the chemo at first, but after a few days of me suffering in a morphine-haze, they finally opened me up. Turns out I had 10+ large intestinal perforations. For those who don't know, that means I had over 10 holes in my intestines and my liquid fecal matter was free floating around my abdominal cavity. During the surgery to fix this, the lead surgeon called my mom and asked whether or not she wanted him to proceed with the operation because he did not think I would survive. She said yes and so he finished it up. I won't go into too much detail, but after the surgery I went into septic shock and also developed a fungal infection, all whilst possessing about zero immune system. I spent a total of 3 months in the hospital, half of which was in the ICU. It was pretty much a miracle I survived.

I had to have a temporary ostomy bag for 6 months to allow my intestines to heal. (The ostomy bag would break sometimes, especially during the nightime. Nothing quite like being 15 years old and waking up drenched in your own liquid shit.) Since I was getting my treatment at a hospital far away from home and in a very expensive city, my mother and I had to live in a tiny studio apartment. It was super hard and I actually don't remember much from that period of time since I was so traumatized I repressed most of the memories. I suppose that was a good thing.

Lastly, after I had my operation to reverse my ostomy, there was a medical error and they gave me too many fluids, resulting me in developing Acute Respiratory Distress Syndrome. I was on the vent for 5 days and they weren't sure if I'd make it. Despite this trauma to my (transplanted) lungs, I still have above average lung function today. I also had to do an entire year of physical therapy because one of the chemo meds totally fucked up my leg nerves and I was forced to relearn how to walk.

It's been a crazy journey, and a challenging one, but it's been worth it. I am alive and healthy today and for that I am forever grateful. I just finished my first full year of school since the 4th grade and even finished the semester with a 4.0. I'm a year behind peers my age in school (I just finished sophomore year) because I had to take a year off for the cancer, but that sure doesn't stop me. I have big plans for the future and nothing will get in the way of them!

Proof: My scars and certificate of completion of chemo.

Comments: 1139 • Responses: 42 • Date: 2016-05-25 02:18:49 UTCsource

Scout_Treeper665 karma2016-05-25 02:41:11 UTC

I don't really have a question thought up but I'll be the first to say here that you're really incredible and its awesome that you made it through all that!

But if I had to give a question, it would be: What part of the journey had you most worried? Through all that did it ever get to the point where it was like "oh great, another bad thing"?

IAmA survivor of a double-lung organ transplant and stage 4 cancer. I also happen to be 17 years old. AMA!