Update on Ellen…”Life is worth fighting for!”
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!”
I can’t imagine what Ellen is going through.. I hope she continues to improve.. GREAT article!
I hope the very same thing buddy…..she is a fighter!!!!
Thanks Darrell! I can’t imagine either but I am soooo glad that she is a fighter!!!
Thanks for the update on “Ellen”. Great article!
thanks!!!
Thanks Tammy for taking the time to read…..a pleasure to share her success.
Thank you for the update on Ellen. So happy she is doing so well. She is an inspiration!
Yes she certainly is……to us all!!! Takes a lot of guts to follow through with this operation!!!
She certainly is Ann….love her!!!
So glad her surgery was a success.
Thanks so much and so am I……everyone just keep praying!!!
I am too Cindy….it’s a happy story for her!!!
I loved hear an update on Ellen, and I am so pleased she is enjoying her healthy lungs. But for me this article impacted me in the importance of donating your organs. And how very much Ellen appreciated her gift of a chance at a new life. Receiving an organ donation is precious. And Ellen is quick to acknowledge how protective she is of her gift. Thank you Linda for another well written article that presents many sides of one issues. You do this with professionalism and heart.
Thanks Sandi! Although I wish the editors would have caught a couple of errors, I am proud to report how far my friend and patient has come. She is SO appreciative of her gift and I AM a firm supporter of organ donation!!!
I Can’t imagine going through all of that . Good luck to you, Ellen , and keep fighting !
Neither could I Jane!!! It takes a great deal “of guts” to go this far and unfortunately many do not even get the chance. The most important thing is for people to remember…..what if that was your family member waiting “to live.” What would you do????? What would you do for a perfect stranger for them to be able to see their kids grow up, hold their grandchild and enjoy the world without pain and complications………it’s a big step!
Great article! I’m glad Ellen’s lungs are doing better after the transplant!
Thanks Dylan…..I totally agree!!!
Glad to hear she is doing so well after a very difficult surgery. Good article.
Thanks for your comment….she still needs ALL of our prayers….she fights on!!
What a fighter, great lady!
Oh…she is quite the fighter!!!!!!
Very happy to hear Ellen is doing well. Thanks for sharing her very important story that emphasizes the importance of being an organ donor.
I agree….when someone is dying and passing on…..what a GREAT gift to give another who may be dying waiting on an organ.
Linda, you write like a pro! Thank you for interesting writing and foresight into the medical field of knowledge!!
Thanks….I am so happy for her I could bust!!!
Great article. Glad to hear Ellen is constantly improving. Hope she continues to do so.
Thanks Elaine for commenting….I too am glad she is “trucking on!!!”
So glad to here she is doing well. Hope it continues forward.
I agree Patty….continued prayers for her!!!
Continued blessings for Ellen <3
AMEN AND AMEN!!!
So awesome to see her improve, can’t wait for the next update!! Don’t make us wait too long, Linda.
I will at some point write again about Ellen my former patient and forever friend. She is an inspiration to us all and I hope all of us keep her in prayer.
So glad she is doing well. Great articles written by Linda, as usual.
Thank you so much….she is doing amazingly and I pray that NEVER CHANGES!!!
It is amaxing to me that you can be sick with little hope to recover and things turn completly turn around. Good for her and thank god she has been given another chance. Thanks for sharing your inspirational stories.
Thank you Serena for your comment. I do not think I will ever understand the timing of events. After so many years of nursing and watching things go sour and things go perfect and be a miracle it all leaves me in awe. But I believe in a much higher power and no matter how crazy things can get HE still has all under control!