Tristan’s Journey

Tristan’s journey began when he was born, but most notably when he was three years old.

Tristan in medical coma copy

Three-year old Tristan during his medically induced coma

February 1990: Tristan was admitted to the hospital as a three year old with complications from chicken pox. His body was retaining water and was puffed up almost beyond recognition. His body went into septic shock and his organs began shutting down. His kidneys were the first to stop working. He was placed in a medically-induced coma for three weeks and transported to Doernbecher Children’s Hospital at OHSU in Portland, Oregon.

The family supports little Tristan during his moments of pain.

The family supports little Tristan during his moments of pain.

March 1990 – 2001: After spending six awful weeks in the hospital, Tristan was discharged. The doctors say it’s a miracle that he survived. Tristan’s mother, Kasandra, would perform at-home dialysis on her three year old son for the next six months. Gradually his kidneys regained enough strength to go off of dialysis and resume life as a child. He will spend the next 11 years in and out of sickness, missing many moments but still attempting to have the most normal childhood possible.

Kasandra, Tristan’s mother, describes this period of time:

[When he was taken off dialysis] we hoped that he would stay at that kidney function, but the doctors assured us that his function was much compromised and that he would likely need a transplant in the future as he grew and his kidney function could not keep up. We vowed to do everything we could do to avoid that and prove them wrong, hoping for amazing outcomes…so along with the medical doctors we saw a Naturopath and did all kind of naturopathic medication. His kidney function held on, but started to decline more speedily as he entered puberty, when kidneys are really taxed. At the end of summer 2000, [his doctor] said that it looked like he needed a transplant (11 years after the kidneys were damaged).

May 2001: Tristan received his first kidney transplant as a 14-year-old. His father, Robert, donated one of his kidneys to save Tristan’s life. His mom and dad both wanted to be the donor, but their kids convinced them that Kasandra should be the caregiver and Robert the donor.

Again, Kasandra comments:

I can say that the time I lost my composure was when I was sitting in the waiting area at Doernbecher and a group of medical staff walked by in front of me, one nurse pointed to a stainless steel bowl all wrapped up that a doctor was carrying. She pointed to it and said…”There it is”.  I was watching my dear sweet husband’s kidney being transported on ice in a bowl that looked like it came from my kitchen, to my dear sweet son’s waiting body. Well, that was so moving. So much love there.

The Gruener family two days before transplant

The Gruener family two days before transplant

The surgery was successful, but there was also a surgical complication that immediately weakened the transplanted kidney inside Tristan’s body. He began immunosuppression (the purposeful lowering of his immune system to avoid rejection of the kidney that recipients will take forever) and started his long recovery process.

Fall 2006: Tristan was a sophomore in college at the University of Oregon. Tristan started feeling strangely in his upper legs, like cramps that wouldn’t go away. He visited a chiropractor and physical therapist, but nothing helped. Eventually, the cramps turned into pain that spread over his body. He visited the UO health center, and they weren’t sure what it was, but they gave him pain meds. He was having to take so much of the medicine to curb the pain that he returned to the doctor. The health center recommended that he go to the hospital in Eugene or Portland, so he chose to go to Portland. The pain would come erratically and unexpectedly, making him immobile every time it struck. Finally the doctors found an abnormality in his bloodwork, which they supposedly corrected and sent him on his way. A couple of days later, he was in the emergency room again in the worst pain of his life. They did more exploring and finally performed an MRI, which revealed a tumor in the center of his lower back, which was pinching a nerve, explaining the pain. He was finally given a diagnosis: a rare form of cancer called Burkitt Lymphoma. This type of cancer is extremely rare in people Tristan’s age, and is mostly a form of cancer that very elderly people and young children in Africa get in relation to something called the Epstein-Barr virus. The cancer is also linked to post-transplant patients and the immunosuppressant drugs that Tristan was taking. Tristan withdrew from college and began aggressive chemotherapy. He was taken off of immunosuppressants at that time and would not go back on the drugs again. If the tumor had not appeared in the location it had, the cancer could have progressed much further and taken its predictably rapid course. As Tristan says: “Thank God that the tumor appeared where it did, because it probably saved my life.”

Tristan and Liina during chemo

The only photo Tristan would allow during his tremendously painful chemotherapy months

Late 2007: Tristan was declared cancer-free, with as much certainty as an oncologist is able to give. He returned to college and tried to live his life as a sick, but grateful to be alive, college student. His full recovery from chemo would take at least the next three years.

DSC_1105March 2008: Alisyn and Tristan met! I had just returned from a study abroad trip to Mexico and Tristan had just returned to college from recovering from cancer. We were both in desperate need for housing mid-year and ended up moving into the same, small, apartment complex on 17th and Mill St. in Eugene. The apartment was only open because construction on the complex was unexpectedly delayed. So many twists of fate in our meeting and coming together! We became friends and, later that summer, began dating. Tristan was still pretty sick at this point, but we only really realized this when we look back on this time years later.

IMG_0738September 2013: We had moved in 2012 to Monterey, California, where we were living a quiet, peaceful life. Tristan was feeling tired yet having trouble sleeping, and he was occasionally nauseous in the mornings. With his history, we decided it was time to reopen his need-hate relationship with the medical system that he had spent all but the last five years of his life immersed in. This was an extremely difficult time for Tristan emotionally and mentally–he had spent the last years finally finding himself again after nearly dying twice before, and he was convinced that his life was coming together in precisely the way it had always meant to be.

Tristan was found to have abnormally high blood pressure and placed on BP medications. Kidney transplants can trigger high blood pressure, but ironically enough, high BP leads to end-stage renal failure (aka kidney failure). At that point, we learned, with shock and sadness, that Tristan was living with only about 30-40% function in his one functioning kidney.

Sadly, back in the hospital in March with a couple of surgeries.

Sadly, back in the hospital in March with a couple of surgeries.

January 2014: After a bout with pneumonia, a sudden and scary onset of H1N1 flu, and one terrifying hospitalization, Tristan was diagnosed with end-stage renal failure–10% function or less. Tristan’s kidney function had gone from 40% to about 10% in less than 5 months.

March 2014: After a second hospitalization, this time mandated by Tristan himself who was gasping for air when he tried to sleep because of excess fluids in his body, Tristan began emergency dialysis in the hospital. He underwent numerous surgeries to be able to start hemodialysis and continue with that process until his other dialysis catheter, one placed in his abdomen, was healed enough to use.

Over the next few months, Tristan would struggle with major physical changes and corresponding depression, anger, denial, and eventually, acceptance, about what he was going through.

Present: Tristan has been on peritoneal dialysis, which he performs himself with the help of a machine from home and manual exchanges throughout each day, for the last 15 months. The process of dialysis is all-consuming and it’s incredible that Tristan has been able to continue working full time with only one month of leave in the last year. Our life revolves around dialysis and his health, and though we were able to get married last fall (read more or watch our short wedding video here), these past months have been up and down and all over the place as we continue to find acceptance and peace about what is happening now.

We are incredibly blessed with an amazing support network and the strongest families we could ever hope for. We are thankful for our jobs, our quiet Monterey life, and so much more. We struggle with the financial side of all of this, and even just the last year has run up an out-of-pocket tab nearing $6,000. We have had to turn down many opportunities and lifestyle choices because of the financial, mental and physical burden imposed by living with a chronic illness.  Still, we are relentlessly grateful for our jobs, insurance, and the love and kindness of those who support us!

AT_FP_064

Tristan and Liina

Coming up: Currently, Tristan’s incredible sister, Liina, who lives in Brooklyn, is in the final stages of testing to become a fully matched donor for Tristan. If the remaining testing goes well, Tristan will be looking at a September or October transplant at Stanford. No one knows better than Liina what Tristan went through as a sick child. Though the decision to accept Liina’s offer of a donated kidney took Tristan nearly a year to make, they are both ready to move forward with this next step and see what the future can hold for Tristan.

If you are interested in helping us out, financially or otherwise, please check out the You Caring page we’ve put together explaining how. 

hardships

Learn more about the stages of kidney disease and end-stage renal failure:

http://www.davita.com/kidney-disease/overview/stages-of-kidney-disease

3 thoughts on “Tristan’s Journey

  1. Pingback: When life gives you lemons… | Wellness for Tristan

  2. Pingback: THANK YOU!!!! | Wellness for Tristan

  3. Pingback: Week of July 13 Update | Wellness for Tristan

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s