after transplant, what are some things that you can do that you couldn't do before?
I can do anything I put my mind to. It may require more precautions but not a big deal. I think about things more carefully before doing things if I feel it might be risky and talk to my docs about them. The best thing I can now that I couldn't before is take a deep, beautiful breath whenever I want.
how has your life improved?
I wouldn't say my life has improved because my life was pretty amazing before, great family, awesome friends, been loved by someone I loved, had wonderful opportunities to see the beauty and the wonder in the world. What I would say it that I improved. My health is so much better than ever before. I have some side effects of the anti-rejection meds but nothing like not being able to breathe. These things are manageable. I still have my family, friends, love and opportunities but I am in a much better condition to fully enjoy them now.
would you do it again?
I have said this many times before. That first full breath after the vent came out was one of the most beautiful and amazing experiences of my life and if that breath was the only one I knew I would get, it would do it again without a doubt. That breath and every single breath since are worth everything that I went through whether it was pain, hospital stays, blood draws, time spent at medical facilities for check-ups, medical treatments anything. It is that amazing to fully breathe, move around, sleep peacefully and just not worry that I will deflate if my oxygen tube gets tangled or make a decision between showering or being awake to spend time with my family that day because I only had enough energy for one. I can't express that enough.
do you feel like life is more fulfilling?
Yes, I never took it for granted before but I am even more in awe of everything this life has to offer. I am graduating with my master's degree in a couple months after studying to be an organ procurement coordinator. I knew my story was pretty amazing and that there were many things that if didn't go just as they did, I wouldn't be here today and this plan of study has made me even more aware of that. It is giving me a chance to pay it forward to every donor family I come in contact with to tell them how appreciative I and every recipient out there is for their loved one who is a hero. I get to share my story with nurses and other medical staff to help them understand how much they are doing for up to 8 people by taking care of that donor. I tell anyone my story and if just one person changes their mind about being an organ donor which may end up saving someone else down the line, I know that I am continuing that positive ripple effect that began with my donor saving me and so on. I am getting married in about 5 months to the most amazing man. This is something I have wanted since I was little and feared I would never see. We are talking with the docs about getting everything set up so that we can have a baby together and create a beautiful life that will make this world a better place. I make sure that every second I have is full of love and appreciation so that it is fulfilling.
do you feel more restricted or less restricted?
Before my transplant, I was on oxygen all the time and as stated above, deflated without it. Compared to that I am free. I still do inhaled tobi bimonthly as a precaution and still take meds like I used to. The big difference is that I have only been in the hospital twice in the 4 1/2 years since surgery and it was for a couple of days, not weeks, and for headache and tummy trouble. That is far less restricting than spending a couple of months of the year in a hospital bed.
As Summer posted above, I also am one of the lucky ones in that *knock on wood it stays like this* I have had no complications except a couple of side effects from meds that can be controlled. Frankly, even my docs are shocked at how great I have been because I was so sick going in, I was in a coma and wouldn't have ever woke up since everything was shutting down on me. I was at the very end of everything. No matter what pain I went through or annoyance of any kind I experienced after waking up just meant that I was alive so for me, it wasn't bad. I kept my head focused on what was to come and all the dreams I had that would now come true as long as I followed my doc's orders. Choosing whether or not to have a transplant is a very personal choice and I wish you the peace of mind and clarity that came to me when making my choice no matter what path you choose. I had no guarantees about how it would go but I knew that I would have my support team around to help. If you have faith in anything no matter what it is, trust it to guide you to the right choice for you and may you be blessed to have the best outcome that you hope for.
I hope this helps in some way. Feel free to contact me if you want to talk more.
