Top 10 Things I've Learned after having Double Doubles

I leave today for Indianapolis to speak about lung transplant to cf social workers and registered dietitians. The diet part is easy -- TPN is yummy! (just kidding) :)

This is a handout I am using at the conference. Just thought I'd share....

April is Donation Awareness month! Are you a registered donor? Why not?

In the spirit of a beautiful woman, Eva:

Love to my donors and their families.

Love to my transplant buddies who have said goodbye way too soon.

Love to those who wait for life to begin anew with a donor heart, liver, lungs, kidney....

Love to those who have transplanted organs who still walk this journey of balance, strength and carpe diem.

Love to those professionals and family members that make the transplant journey an option and then, a reality.

Top 10 Things I've Learned after having Double Doubles

1. One of the most difficult circumstances for any human to bear is the unknown. Waiting for transplant is the ultimate unknown. Waiting can be the hardest part of the whole process.

2. The time waiting for transplant is probably the longest period in a person’s life when they are not “in the rat race.” The rat race will begin again after transplant, if the outcome is a good one. Many people hope and work towards having this level of “nothing to do”; they call it a sabbatical. If patients can think of the waiting as a sabbatical, they can give themselves permission to use the time for inner work, planning, and a favorite (or previously unexplored) leisure activities.

3. Transplant is a major event that is very mysterious until you go through it yourself. Because of all of the emotions that go with this process, being sick, and the surgery, it is normal to cling to every word of the people who have previously been transplanted. Listening to other patients may help avoid potholes but be one has to be careful: some patients might be potholes. Compare not. No two experiences of transplant will be the same. Even for those who have had the transplant twice, the experiences are completely different. Even having the same body/mind does not equal having a similar transplant journey!

4. This is a time when patients and families need the most support. Some people will be a surprise because they will step forward and some will be a surprise because they step back. Patients and families may feel like the ones who step back have abandoned them and let them down. More than likely, those people love the patient/family very much and are ill-equipped to handle watching someone they care for go through such a difficult time. It doesn’t feel like love, but it is.

5. Even for the most peaceful patients and family members, there will be hard days along the transplant road; pre and post. Sometimes, it can be difficult to share the deepest emotions with the people in the “inner circle.” Sometimes patients/families need someone slightly removed from the situation to speak with openly and honestly. Social workers and therapists can be an invaluable resource on this road.

6. Don’t forget that you are living today. Waiting for transplant often feels like life is in a holding pattern. In many ways, it is, but the mind, the spirit and, relationships continue to evolve and grow, even if the body becomes weaker. Remaining conscious of That Which is Important can increase quality of life.

7. Emotions are impermanent and can be influenced by your body’s struggle. For example, some people have moments when they feel like they would rather “give up.” This is normal for someone who is dealing with end stage illness and the feeling will more than likely pass. Patients must be allowed space to cry or feel blue while keeping in mind that infections, fatigue and shortness of breath can be physical triggers for an emotional reaction. Knowing this might take the edge off. It is important to try not to take these emotions too seriously right away. If a patient can’t get out of the funk, that’s not unusual and they can consider various ways to treat this—medicine, acupuncture, therapy etc…

8. The transplant experience can be complicated. Bumps are expected for at least the first year. There will be a learning curve about the new meds, symptoms etc. It seems overwhelming but it will eventually become as routine as brushing teeth. For the first year, patients should be careful not to make many definite plans until things have stabilized. The have to be reminded that any symptom, even if it seems minor, should be reported to the team. There are surprising nuances to post-transplant symptoms. All the while, it is important to focus on goals and remember “This too shall pass.”

9. There are no guarantees for anyone, before or after transplant. Some people choose to cope with this through hyper-vigilance with germ management. Some people live life in fear of chronic rejection or missing a dose of immun-suppressants. Some people focus on their perception of a solution ie. Exercise, meditation, “living a normal life” etc. There is nothing wrong with any of these things, however, the only thing we can do is live a life we love so that no matter what happens, we have no regrets.

10. I am not illness. There is a part of me that is never sick, never tired and never scared. Separating “me” from my body is very helpful in coping with illness. I can still enjoy life, no matter my physical state of being.