Cystic Fibrosis and Bi-Lateral Lung Transplants as Therapy
Posted Dec 13 2010 12:00am
I’m pretty sure I’ve written about my views on CFers and lung transplants as the ultimate therapy/treatment nearly to the point of it being ad nauseum, except it may be continually overlooked since it’s often in combination with a manifesto about taking control of your life and doing everything you can do keep going on your original equipment as long as you can. Some of my comments about my view on transplantation on Facebook have shaken up some dust, gotten people upset, and encouraged/strengthened others. Since it’s such a mixed bag and Facebook is hardly the place to write 1,400 words on the topic, here goes!
Here, I am fighting to Change the Standard of Thinking of patients, family, friends, and even the medical community in several areas, and this is one of my most passionate, though likely not the most far-reaching and definitely my most controversial. The way I see it, if everyone thought they would eventually need a transplant no matter what they did regarding treatments and compliance, why the flip should anyone do any at all? They’ll just get new lungs earlier and go about their lives with digestive, sinus, vitamin and mineral absorption issues. I am not against transplants as a therapy or the people who get them. What I am against is the mindset that everyone with CF will need a transplant someday to avoid death or else live on life support in a hospital until they die once they can’t sustain themselves.
Notice the banner for Angel Cove Organ Donation Awareness in my sidebar. It’s a shop and site run by a mutual acquaintance of a friend whom I met in Chicago at a blogging conference. Fast forward 3 years and I come to meet her after she used my business contact form after he referred her to me for some of my services. Three months later, she saw my tweets and Facebook stuff about this site and we were both floored by the “coincidence” that both her husband and I have CF. He just celebrated his 10th transplant anniversary this Fall. His story and watching this video where two of the most powerful things that made me set into my mind to never give up on my natural lungs, with those reasons following soon.
Organ donation saves lives. You can be in a slip and fall or a car accident (or a ton more freak scenarios that will get you on TLC or the Discovery Channel) that can cause brain or spinal trauma to the point where the body will shut down but clearly never be at all functional again. With good health, many people can be saved or rescued from a disability. With poor health even, many times some organs can still be sent off to someone in need.
Extended life past what is possible with original equipment.
Giving loved ones (hello, spouses) a new CFer and more time than otherwise.
Improved quality of life after life gets more normal after a few months.
Regained ability to exercise and do activities often absent for decades.
No need for supplemental oxygen.
After a while, no daily need for Vest or nebulizer treatments.
Easy weight gain if not experiencing common gastro issues after surgery.
No more wondering when these CF lungs will completely give out.
Could possibly not make it through surgery or the touch-and-go recovery period.
Living with the fear of rejection.
Living with the fear of infection with an immuno-suppressed body.
Severe initial demands of clinic visits, bronchs, and physiotherapy.
Restricted diet after a life of eating anything you want.
Relatively short-term data on success rates and skewed numbers make the decision difficult leading back to the last pro listed, only now with new lungs.
Now that it’s been summarily (and also once again) established that I am pro-transplantation what, exactly, are my feelings and thoughts on the matter. Forgive me if some of this is a re-run for you, but we’re joined by a bunch of new readers since my last run on the topic.
If my lungs gave out next month and I was on O2 and IVs didn’t give us any results, I’d be on “The List” in a heartbeat. We have saved for such a time, though it’s not at the level we would need to feel comfortable going forward because to do so is only prudent. We are not planning yet still planning as wise financial and emotional planning. Some additional fund-raising would immediately begin and we are confident that we will be provided for in our time of need if that time should cause a need.
I was not always of this thinking because I was not always needed. It makes Beautiful very sad to think that there was a time in my life that I felt this way, but seriously, let’s dive into my head back in the day. One’s parents don’t need them, but they will always be liked and loved unless one’s parents are sick in the head. I had friends, but hindsight painfully shows that I was more interjecting myself into the lives of others because I was lonely, not that anyone anywhere needed me around. Any husband, wife, father, or mother knows of that difference that occurs in one’s psyche, their very soul, the moment they realize they are truly needed.
I was on track for a transplant pretty soon after our wedding on the course I was on the year leading up to it unless marriage “suited me well,” health-wise. Indeed it did. I went something like 13 or 16 months without IVs after the best day of my life. I knew she was on my team if that was what would be needed at any point to keep me around, but I was under strict notice while we were still engaged that I was not to let it happen before necessary due to any lack of effort on my part due to the very danger of the surgery.
At the time, the published numbers were a 50/50 survival rate at 2 years. Now it’s 5 years. Both of those are skewed away from being true numbers for recently healthy CFers in their 20s and 30s because it includes all people for all reasons in any health condition at the time of transplant. Example: it’s like saying the divorce rate in the US is 50%, give or take. Yes, it is, until you take the following into account as positives that all decrease the “risk” of divorce: first marriage for both, have higher education, two sets of un-divorced parents, pre-marital counseling, dated longer than 6 months, earn more than $30k/yr, have a common belief system, and did not live together before marriage. From what I’ve gleaned from research and from seeing so many long-term survivors, the survival lengths of CFers are way beyond the medical community’s averages (and I like using median numbers better anyway).
What will get on my raw nerves very fast is the mindset of anyone (be it patient, family, friend, or doctor) who is counting on a transplant in the future “just because” it’s what is normal for CF. I’m not talking about those who decide to not get listed. I’m talking about those who were diagnosed late and have a more mild CF. Those who are seeing great results from their current therapy. Those who are so young they may get to benefit from a cure before they’ve even had half the number of PICC lines that I’ve had. Some day when the technology and techniques for a bi-lateral lung transplant are so refined after there is a cure, there may still be a day where natural aging would still continue to decrease my function and require a transplant – but I’m not going to revolve my life around the mis-guided “fact” that all CFers will die early from respiratory failure unless they choose and receive a transplant in time.
I will not discount that it is a very personal decision, as I know of CFers who have chosen not to go through with a transplant (though I don’t know of any married CFers who have chosen that) and a growing list of those who have been listed and successfully transplanted. Now that my decision is immaculately clear and why I would choose to get new lungs, let’s take a bow to those who’ve received new life and take a moment to remember those who didn’t.