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    • #25622
      Mark Koziol
      Keymaster

      Unfortunately, lung transplants have the lowest survival rates among solid organ transplants. A little over half of lung transplant recipients have a life expectancy over 5 years. I am currently approaching my 5th anniversary. The Laboratory of Organ Transplant Genomics in the Cardiovascular Branch of the National Heart, Lung, and Blood Institute (NHLBI) has initiated a study to develop a test to detect organ transplant failure. The process of determining failure is conducted by a blood test comparing the donor’s and recipient’s DNA.

      Currently, only an invasive bronchoscopy can detect “hidden signs of rejection”. Dr. Hannah Valantine, M.D., is a co-leader of the study. Dr. Valantine states, “We showed for the first time that donor-derived DNA is a predictive marker for chronic lung rejection and death, and could provide critical time-points to intervene, perhaps preventing these outcomes.” As a lung transplant patient who has experienced acute rejection, new findings to facilitate longevity for lung transplant patients are always welcome. My acute rejection was found by a scheduled bronchoscopy after my 3rd month. A prednisone taper was successful. If doctors knew beforehand on what to expect “doctors would then have the option to increase the dosages of anti-rejection drugs, add new agents that reduce tissue inflammation or take other measures to prevent or slow the progression.”

      I am curious to know how many of our members have experienced acute rejection or are in chronic rejection?

    • #25631
      David Ota
      Participant

      Hey Mark

      I was diagnosed with Chronic Rejection – BOS at the beginning of this year, about 3 years and 8 months after transplant. PFT were down +/- 10% to 18% depending on how you measure.  My wife and I spoke to the pulmonologist we trust the most and started looking a experimental trials.  We ended up at photopheresis, which is not really experimental, but Medicare (currently being trialed) does not cover it because is did not go through a trial.  Luckily I have private insurance that covers the procedure.  It’s a fairly lengthy procedure at the start, you get a “port” inserted under your skin to pull blood.  The port is about the size of your thumb, and requires day surgery to get it installed.  Then I go to the infusion clinic twice a week every week (4 weeks), twice a week every other week (2 months), then twice a week every month (9 months).  Each visit take 4-5 hrs depending on how thick your blood is that day.  The clinic pulls 1 liter to 1.5 liters of blood, spins it, irradiates some small portion of the blood (white blood cells or T cells, I’m not sure) and pumps it back in.  Great fun.  The procedure seems anecdotally effective.  My PFT FEV1 increased after the 1st bunch of treatments.

    • #25634
      Mark Koziol
      Keymaster

      Hi David, thank you for commenting. I really appreciate reading your story. It is amazing how every case is different. I am happy to see  the improvement in your pft and hope they keep improving. I wonder if this blood test could have helped doctors foresee the future in your case. On a brighter note I know of a recipient who has been in chronic rejection for over 11 years and is out 19 years. I hope this is just a little bump in the road for you and maybe one day there will be an approved medicine to combat BOS. Please take care, Mark.

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