Many have asked how Ellen has been doing since her lung transplant at Johns Hopkins and the writing of my last two articles (Succeeding in the Time You Have Been Given & The Angel in the Room). Here is your update and how things have been going for my very “warrior like friend.” I will interject here and there but most of this is directly from Ellen.
“Since my transplant, I’ve felt alive for the first time in a very long time. Staying healthy is my biggest job because after a transplant you do not want to become ill. Avoiding anyone sick and any sources of germs and bacteria is an everyday worry. My family know that if any of them are feeling the least bit sick that they must stay away and the same goes for being around anyone that may be sick. Don’t be coming through my door and be carrying “a gift of sickness to me!!!” My family all knew but were constantly on the watch duty for friends who might forget.
Staying active is a MUST for any new lungs that have been transplanted. They need exercising. The medicines that are required daily were overwhelming in the beginning but I look at them as LIFE for me now and they are part of my regular routine. You must monitor your blood pressure, temperature and blood oxygen level that is circulating in your body daily if not more often. After my discharge I returned to the transplant clinic within two weeks for my first check up and then every two weeks up until this month.
Yes, there have been some scary times but you learn to read your body much closer than before because you are the only one who truly knows how you are feeling. I have a 24-hour access to a transplant coordinator for any questions or concerns. If you’ve never been around a transplant patient, it’s much easier to explain if you or a loved one has had a heart attack or had open heart surgery. Any change, pain or ache you wonder if something is going wrong. It does put you “on the edge at times.”
I have had two hospital stays which have been for only three days each. Both of them have been for low oxygenation scores or PFT scores. PFT tests measure your oxygen outflow which can indicate acute rejection. Thus far I have been blessed with no rejection!!! I have graduated to once a month for rechecks.
I never realized how very many things that I had not been able to do. My disability had taken over my lifestyle. I had adopted a new way of life until the transplant and then the things that I had not been able to do for so long due to lack of oxygen all came back into view. Simple things like talking, and I love to chat to family and friends. I remember one day turning on the car radio and for the first time in two years I was able to sing along with the radio. Taking a shower without needing my husband to help me. Playing with my grandkids and kissing my husband patiently without gasping for air. It was like my eyes had been closed and reopened for me to appreciate what God had given me. I remember on one of my trips to Hopkins I was looking out the window, just like everyone else does, but I actually noticed how green the grass was and it was almost magical. My “gray world of just hanging in there” had brightened, became clearer and much more meaningful. I feel I have a purpose in life now not only for myself and my family but for others.
The fear of a transplant was one of the scariest decisions I had ever made but it was the best choice I have ever made for my body and health. LIFE is worth fighting for and I will fight on not just for me but for the person who made this possible for me. I don’t refer to him as “donor” anymore because I felt that was disrespectful. I do know that my lungs came from a gentleman, so I have named him Jack. I hope and pray that one day I will meet Jack’s family. Yes, I am an organ donor also. I’ve talked to the transplant team about this and the medications I am on and YES….I can still be a donor.
This, being able to still be a donor, gives me a sense of peace knowing I can still give life to others in need when God sees fit to call me home. Never second guess becoming a donor because someone out there is praying for LIFE!”