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    • #19088
      Mark Koziol
      Participant

       

       

       

       

       

      During a conversation several weeks ago with my post-transplant nurse coordinator, she mentioned to me how happy she was that I was doing well and thanked me for being compliant with my care. I replied, “why wouldn’t I be compliant it’s my life we are talking about”. She went on to say many patients who receive transplants are not compliant in their recovery program, which lasts for the rest of your life. In order for someone to be placed on the lung transplant list they must undergo a lengthy and exhausting evaluation. Every transplant center has similar programs in place but each center may have a different series of tests to perform compared to the next. In order to be placed on the list you must be compliant with pre and post-transplant care instructions.

      I cannot fathom receiving such a gift and throwing it all away due to non-compliance. From my perspective, being compliant is non-negotiable. Be responsible. Nothing should get in the way of a transplant patient’s desire to live. After receiving a transplant; you must take your meds on time as there is a 15 minute window on either side of your prescribed time to take your medicines. It is a fact that people live longer when they take their medications on time and as prescribed.

      On my second day out of the intensive care unit (ICU) after transplant, I was given a lockbox with my daily medications. I had to identify and place each medicine in their correct time slot. There were also placards for each medicine stating what they are for, which was was very helpful for me. I had to do this for the duration of my stay. At home I use an app to send me texts and notifications when it is time for me to take my medications. I find this very helpful although I probably don’t need the app anymore.

      Some transplant patients choose to not follow an exercise routine after their pulmonary rehabilitation.  It is my hope that someone doesn’t choose the stationary task of watching television over exercising. Simple walking can do the job, but I like to mix my routine up a bit. I feel strengthening my body with weights and doing various other cardio exercises helps in my recovery. No matter what, I walk for at least 30 minutes a day.

      Exposing oneself to hazardous pollutants while not properly protected is also an issue of non-compliance. Many people think they can go back to their normal activities post lung transplantation but you can’t. You cannot cut the grass, play in the dirt, be a master craftsman in carpentry, etc. If you have to ask if something is OK to do, the answer will probably be no you cannot. I have no problem hiring someone to do the lawn work around my house.

      A transplant patient should do everything in their power to stay “above ground”. I know there are patients who are compliant and their transplant doesn’t work out for whatever reason. Receiving a donor organ is the ultimate gift someone can receive. This is not an all-inclusive list of non-compliance scenarios but these are the main areas where most people fail to comply.

      Forum members, do you have any input on why a person would choose to be non-compliant after lung transplant surgery?

      Do you believe it is the overwhelming nature of the task or can you think of something else?

      Lastly, I would like to say Happy Mother’s Day!

       

    • #19322
      Mike Coleman
      Participant

      Totally agree!  My biggest fear is that my lungs would fail because of something I did or didn’t do.  Respect your gift of life.

       

      • #19338
        Mark Koziol
        Participant

        Thank you Mike for your comment. You are totally right.

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