Dealing with life after transplant

I don't know if I have posted too much on this subject, maybe a few times. I really like to focus on how much better my life is now that I have new lungs. Believe me I wouldn't change it for the world. But to be a little more "real" or I guess to put it, lets face the reasons Cystic Fibrosis needs to be cured, not just bandaged up.

A lung transplant for ALL CFer's is something they will have to face. I am not being un-optimimistic, but that's seriously the 100% truth! It is the closest thing we have for getting any improvement once all the meds, and exercise and supplements and all things tried, fail. WHY? because believe it or not, your lungs are DISEASED! I didn't realize that fact until I saw what they looked like after they were taken out of my body. It is shocking! They will have an experation date, sometime! So if you want to know some facts about your ONLY option at this point, then read on.

Transplant is not a cure. That being said, it is a good trade. CF at the point where you are considering or evaluated a transplant is pretty much sucking every bit of energy, happiness, hopes, dreams, and future you may have. Believe me I felt all those things. I was in denial and isolated myself so I wouldn't have to face the world as "the sick girl", then I got angry "I did everything to stay healthy and it's not fair", then I pleaded and begged to get better, then I cried and became depressed. I lost the ability to do a lot of things I loved, I felt no one understood what I was going through. Then I finally accepted the fact that I was going to die soon, I needed to be strong and a transplant was the only other option. Option A: was to just give up and die. . .while Option B: was to at least go down fighting, take a risk and try to help myself.

Here is the trade offs: Lots of pre-testing, going on a waiting list, waiting, waiting, becoming more sick and weak while waiting. Getting a match, excitement & fear. . . . Surgery~ Hardest thing you'll do. Recovery~ Harder than surgery~

There may be complications and set backs. Recovery varies from patient to patient. Now you have healthy lungs that need to regain their full strength which will come in time. PILLS. . .we are used to pills, vitamins, nebulizers etc, So you pretty much just trade off CF drugs for Anti-Rejection drugs, prednisone, antibiotics, lots of regular blood work, and what side effects your new drugs will have. Also you will have regular check-ups (clinic) along with bronchoscopies to check for rejection or infection. Your care post transplant is a more strict regiment than with CF. . . .you must be fully committed or you'll loose what you worked so hard to get. You will regularly test your blood sugars, PFT's (at home) and at clinic. Along with your temperature and ANY signs of infection or rejection. But Believe me it all fits into your day and it takes WAY less time than what you do with CF lungs. Here is the biggest trade off. You always have the chance of rejection (which can be treated especially if caught early) but you get 80% FEV1 or better, you can run, dance, laugh, enjoy your family and even possibly have a family of your own. Your dreams and aspirations in life become realistic again. Anything is possible, it's your 2nd chance to do whatever you wanted that CF held you back from.

If you treat your post transplant care responsibly and seriously, then you can expect 5+ years from you new lungs. I have met many that are 10+ or even 15+ years out. Advancements in transplantation of Organs is also moving forward and breaking records.

So I hope you see, that Cystic Fibrosis ideally needs a solid cure!! But until that is a reality, transplants are all we have. They are a last resort. Live your life with "YOUR" lungs for as long as you can, when they become too diseased to be of any use, seriously consider Option B vs Option A. . . . .

Thanks!

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