I did reach the major milestone of celebrating my 3 year transplant anniversary. Recent Scientific Registry of Transplant Recipients (SRTR) data shows that I'm a member of the 64% who have done so. Not only have I survived, I have thrived. Yes, there have been setbacks. And yes, I am having some issues that I will talk about in a bit, but I have survived. I am doing much better than I was the year prior to my transplant. I am not back on supplemental oxygen, and I am enjoying life.
Life is good, and my new lungs have been a wonderful gift from a very generous donor family. Now part of package that comes with the gift of new lungs is the knowledge that there will be setbacks, and that new lungs don't last forever. My lungs are on the downward slope side of the post transplant lung capacity bell curve.
We are not sure what is going on with the little dip at the tail end of the graphs. It may be a continuation of the chronic rejection that started near mid-chart, or it may be triggered by something else entirely. A steroid pulse over the weekend followed by a taper that I am on now seem to have stabilized things once again. We'll see soon enough. I've also been having issues with very low white blood cell count and other related labs so my meds are all out of kilter. Again just part of the package.
I am a bit reluctant to talk about this new chapter in my journey as I really don't want to discourage anyone who is in the middle of making the decision about lung transplant. Thinking about it, I feel that writing about what is going on may be helpful to some, I know information like this is something that I look for, and cannot find.
So what do you think? Are you interested in reading about my annual testing results, hearing about what's going on with the new lungs, and following along this new chapter in my journey?
Let me know, I'm really interested in your thoughts.
John, as a friend and fellow Lung Transplant Survivor, I can identify with the continual ongoing, and, sometimes precarious life we live. First and foremost, I admire your openness in making privy to others; what is otherwise private, I understand.My wish is that your condition improves, or at best, stabilize. Hopefully, we'll meet again...soon, until then, my thoughts and prayers are with you and yours. Beside every man; stands a strong woman, beside every transplant patient;stands a stronger one.
ReplyDeleteThanks, looking forward to the next time we get together.
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John,your name came up in a post today at Primalforums.com. We have a number of former MDA forum folks there. It is good to see you still out there and posting, even if you are having a set back. I would like to again invite you to join us.
ReplyDeleteWishing you the best, Rig D
John – Please keep writing and know that I, like you, find very few places providing any bit of transparent overview of the post transplant experience, especially during chronic refection. I believe that you are helping many by sharing the details of your story. Thank you!
ReplyDeleteAnd thanks for sharing the run chart on your PFTs (FEV1 and FVC). Over the past month, I watched 2 lung tx patients from our center that I knew (neither with IPF, both had CF) pass away… one at 1.5 years and the other at 5 yrs. Causes us as recipients to pause and reflect, but also helps me stay thankful for each moment. I am now 654 days post double lung transplant. Have been hospitalized twice since my transplant; acute rejection of my transplant, pulmonary embolism and infection.
Pieces of my story: IPF diagnosis May 2014 age 44. Only noticeable symptom at time of diagnosis was chronic cough. At the time, our 4 daughters were 15, 12, 4 and 2 when I was diagnosed with IPF. I still remember the day driving home from being formally diagnosed to tell them that I had IPF and possibly 3-5 years left to live…and actually would not have made it to Thanksgiving 2016… prior to tx, I was on 8 liters of oxygen/min 24 hours a day and would desaturate and heart rate would spike just trying to walk slowly across the room. I was completely healthy otherwise, never smoked, rarely even a cold and no sick days in 20+ year career. Fit and healthy my adult life. Double lung transplant July 3, 2016 age 46 @ UNC Health Care. Doing well…to date. No expectations…just thankful for each next breath.
Worked full time right up until tx, and then back to work full time just a few weeks after tx. Spent 12 days in hospital after tx surgery. As you know, it’s a roller coaster ride after and daily side effects from meds make life interesting.
Podcast with Dr. Ron Falk, Chair of Department of Medicine, UNC Health Care
https://www.med.unc.edu/medicine/news/chairs-corner/podcast/lung-transplant-patient
Short news article…
http://wncn.com/2016/09/18/at-fundraiser-unc-worker-recounts-how-organ-donation-saved-his-life/
Again, thankful for every next breath and every next moment God grants me to invest here. Life itself is a sacred trust to be stewarded…every moment, regardless of my feelings or understanding, infused with meaning. Thankful for IPF, for lung transplant & any more moments I may have left…reserving hope for many more. Thank you John for continuing to share your story!
-Andy Nelson
andynelsoncpa@gmail.com
Hi Andy, thanks for stopping by, and thanks even more for your comment. I've still been on the fence about posting this part of my journey, but you are right, there is not much out there about chronic rejection.
DeleteHey Andy. I've added a couple posts on this new part of my journey. Let me know what you think.
DeleteHello John and Thank You for your postings. It is clear to me your journey has been a struggle but now sounds encouraging.I am a dual Lung TX patient for 6 months now. I attend regular support groups and enjoy hearing about other patients post TX. I am doing fantastic and I hope and pray it continues. I believe my successful recovery so far has been motivated by my own mental outlook on this process. I believe I am very lucky and blessed to be doing so well. One of my favorite stories is telling of the medical statements that I have been seeing. I am now a million dollar man after six months and it is still climbing. I am lucky to have 2 great insurance companys and my out of pocket costs so far have been 800.00. I count my lucky stars daily for being in a Union medical plan for the last 40 years. I wish you a further speedy recover on your health issues and I Thank You again for sharing your thoughts. Yes it is a blessing to receive a donor lung and I am forever grateful to the donor and his family.
ReplyDeleteHi Cinefanman, thanks for stopping by, and thanks even more for your thoughtful comment. I know what you mean about being a 'million dollar man', I think I'm helping build the new wing on the UTSW Medical Center :)
DeleteSix months in with your new lungs, that's awesome. You're still discovering everything your body can do with all that oxygen. At the bottom of the sidebar is a list of post labels, click on "Kettlebells" to see some of what can be accomplished with new lungs.
Have an awesome day, and yes, #DonorsAreSuperheroes
Thanks for your advice. I recently celebrated my 1 year Birthday with my new lungs. Still going strong and working hard for another year. The future is looking so bright I have to wear shades. :) I am so lucky and blessed.
DeleteCongrats on your 1st lungiversery, an awesome milestone :) Thanks for stopping by I appreciate it.
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