Oxygen & Dialysis

A life with two lifelong therapies

Long-term oxygen therapy and renal replacement therapy – both are my chance to lead a largely normal life. Certainly, my daily routine is now largely dictated by dialysis days (six hours each Monday, Wednesday, and Friday), yet I still have time for a fulfilling private life and to dedicate myself to supporting patients on long-term oxygen therapy. When I was prescribed long-term oxygen therapy more than 17 years ago, I initially felt helpless and skeptical about this new situation. The outlook wasn't promising, and it meant I had to adapt to the new circumstances. However, this required me to be well-informed. So I began gathering information from my doctor, my medical supply provider, online, and in national support groups; and I repeatedly asked them all questions.

Exchanging experiences with other affected individuals as a lifeline

But even that wasn't enough for me. Where were the fellow patients, the ones who knew what it meant to live with long-term oxygen therapy? There were far fewer patients back then than there are today, and where were they? With the support of my doctor, we founded the LOT group in Augsburg, where, for over 13 years now, those affected, and especially newcomers, have been meeting regularly to exchange experiences. And through this work and my continued interest, long-term oxygen therapy, and thus the LOT support group, became my fulfilling hobby. Yes, I would even say today that it's my therapy – or at least my purpose. In 2011, the next lifelong therapy came my way: I've had to go on dialysis ever since. Due to a genetically inherited kidney disease, I had always known that this was coming. Nevertheless, the implementation was once again a drastically disruptive phase of my life. And in 2016, I founded the LOT group in Lindau on Lake Constance, where I happily travel to the meeting every fourth Saturday of the month. Which also gives me a break in a beautiful landscape.

A good doctor-patient relationship is absolutely essential.

A good doctor-patient relationship seems essential to me in order to foster trusting collaboration. For example, I have been a patient of my pulmonologist, Dr. Andreas Hellmann, in Augsburg for 29 years. For the past 13 years, Dr. Thomas Kirschner, also in Augsburg, has been my nephrologist (kidney specialist), and I use the dialysis center attached to his practice. I feel comfortable with both doctors (and their teams), although I have previously been to other doctors where I was dissatisfied or didn't feel well cared for. I believe, and am convinced, that a good doctor-patient relationship greatly contributes to well-being, compliance (adherence to and acceptance of therapy), and the course of treatment.

The 3rd therapy: Commitment to self-help

For me, both therapies represent a chance to continue participating in life, even though my overall health is severely compromised and I can no longer manage my own household. Thus, I retain my "third lifelong therapy": my commitment to long-term oxygen therapy with all its issues, its diversity, and its challenges, and especially being able to participate in training sessions and consultations with other patients. These activities keep me active, challenged, and provide me with a full daily routine, which is beneficial for my mental health and overall well-being.

Ursula Krütt-Bockemühl, as published in Alpha1 Journal 2/2017.