It has been 3 years since Randy, my husband, received the last minute gift of a double lung transplant. Randy had been on life support for almost 2 weeks, and time was running out. His lungs had failed, but no one really knew why (after the transplant at UT Southwestern Transplant Center it was determined that Randy had Idiopathic Pulmonary Fibrosis). The past 3 years, post transplant, have been full. Full of fear, sorrow, hope, joy, and relief. I think we have run the gamut of emotion, and it has been a true roller coaster. The last year has been much more tranquil, though, for which we are grateful. Both of our children married in 2015 and we have welcomed two new family members! Looking back, I want to reprint my post from September 10, 2013, reminding us all that Miracles do Happen! [Read more…] about Randy is 3 Years Post Double Lung Transplant and Doing Well!
Lung Transplant: The Unexpected Continues
HA! I know how he feels!
My husband, Randy, is two years post a double lung transplant. A double lung transplant is a very serious surgery, and remains a very serious condition (for details, see Our Transplant Journey). The procedure, and a wonderful donor, saved my husband’s life, and I am grateful, but the unexpected can really catch you over your head in an instant! See what I mean?
Last week we discovered that Randy is having a rejection episode, and has e coli in his lung. Randy has had both conditions before, but this kind of news is always a shock. “Rejection” is never a good word…or condition.
On Wednesday Randy had a PICC line inserted so he can take IV steroids and antibiotics every 8 hours, along with breathing treatments through a nebulizer. The good news is he can be treated at home, which tells us that the rejection must be mild or they would have him in the hospital immediately.
There are so many things that can go wrong, and lung transplants have the lowest success rate of any transplanted organs. The lungs are exposed to the air, so the transplantee is always exposed to bacteria, germs, and viruses. It is, shall we say, a given. The unexpected is actually the norm when it comes to lung transplant…you can count on unexpected complications.
I do my best to remain positive…relentlessly so. I know this rejection episode will resolve. It has been a long journey, and often a painful one, since Randy became critically ill in August 2013, but he is here, alive, and for the most part, doing well. These little episodes can be frightening…and sometimes they are not so little, but thank goodness he is permitted to stay at home for this one. It would be difficult through the holidays to have to go to the hospital to visit…but always better than the alternative! We are grateful this holiday season that Randy is alive and mostly well!
There are trials at every stage of life, and midlife has surprised us in many ways. We can plan, but we are always in the hands of fate. We count our blessings, and concentrate on the good things in our lives.
I wish you a very Merry Christmas, and remember, just breathing is a gift. We don’t know what tomorrow will bring, so for now, just breathe…and feel the joy it brings! It is the season of miracles.
Fab Photo Friday: White Water Rafting in Aspen!
Thank you to Blazing Adventures in Aspen, CO for a fabulous white water raft trip! We had a great time, as you can see! The guide, Mike, was super, and we not only had fun, but we learned quite a bit about the canyon and the Colorado River. Next time you are in Aspen, be sure to call on them! The Ritz Carlton recommended them, and they are the best. (They also take great photos and video, I’m sure you will agree! It is so wonderful to be able to buy photos of your group rafting!) We also had a terrific Jeep adventure with Blazing Adventures!
It was so wonderful to see Randy enjoy himself on the water…while we were in Aspen we celebrated his 2 year post double lung transplant anniversary! 2 years, and here’s to many more!
Two Years in the Rapids: a Photo Essay of Gratitude
Today marks the two year anniversary of my husband’s double lung transplant! We are celebrating by enjoying a trip to Aspen with another couple, who stood by us all the way. Yesterday, we whitewater rafted (and floated) the Colorado River, and I think that is a fair analogy of the last couple of years!
I want to thank our friends and family who stood by us during a horribly uncertain time, and continue to give us their love and support. There really are no words to convey the depth of our gratitude…so here are some photos of the last two years.
Thank you.
The Roller Coaster of Transplants
The roller coaster never stops. Randy has been feeling quite well after a shaky start this year. In January he was hospitalized with the CMV virus, and in March with another virus. It has been a tough year for him as his father has been ill and in the hospital as well. Randy and his dad are very close, and it has been hard for both of them as they watch the other fall ill. They make the best of it, laughing about how they are the blind leading the blind, but underneath the joking there is concern and deep sadness for them both.
We flew to Cozumel on June 29th, and it has been a joy to watch Randy snorkeling, walking, and regaining strength after his long bout with a blood clot in his leg. The clot is gone, and Randy has been gaining in strength. Until yesterday. I went diving yesterday morning, and Randy sounded like he might be coming down with a cold or sinus. When I returned from the dive at 130p, I found Randy packed and ready to go. He had a fever, chills and was achy. I drove him to the airport immediately and put him on a plane to Dallas. The doctor wanted him to go straight to the ER at Clements UT Southwestern…and that is where he is now. Another virus, 5 days of breathing treatments, then home. I lost my iphone a week ago, and my internet is not working.
When we were desperately waiting for a lung transplant, all we could think about was getting those lungs. We didn’t think about the future because the present was as much as we could handle. The hope, of course, is that once the lungs are in and recovery has been achieved, life will go back to “normal”. In some respects it has…but for the most part, “normal” has changed. The challenge is Randy’s immune system, which is significantly lowered by the anti-rejection medications. He comes down with illnesses very easily. Everything one can see or touch is a potential source of illness. His new lungs haven’t had much difficulty at all, they have functioned beautifully.
So I am torn. Randy and I have discussed it many times. We agree that I should travel and do the things that we had planned to, and participate in the causes I am committed to. It sounds good, it is rational, an agreement reached by both parties. Randy will be well enough to do some traveling, and to come to Cozumel. But at the first signs of fever and illness, we have decisions to make. And though I know intellectually that it is right for me to take care of myself, to continue as best as I can doing those things we planned to do, there is a part of me that feels guilty. I feel responsible, and always have, for just about everything and everybody. And yes, I work at not feeling responsible. However, if I am honest with myself, and I am, I admit that I feel torn. I want to do what Randy and I have agreed to, which is to continue living my life. I spend probably 85% of my time with Randy, but it is a conflict knowing that he is in the hospital *and I know he will be fine* while I am in Cozumel diving, and heading on a Manta expedition in a week that I’ve had planned for months. And of course, if there is a hint of serious illness, I will fly home.
And so it goes, as the roller coaster takes a stomach dropping dip.
Push Me Pull You
Do you remember the Push Me Pull You two headed llama from Dr. Doolittle? If you do, you must be close to my age! I don’t think the Eddie Murphy Doolittle had the llama. Anyway, that llama is a good image for how I feel much of the time.
Learning to be flexible in this crazy world is a must, but I have to confess, it can be tougher than I thought. I would never have anticipated that my husband, who has always been perfectly healthy, would have faced death 18 months ago, or that our lives could have changed to such an extent. (Randy suffered a sudden respiratory failure and ended up with a double lung transplant from a disease called Idiopathic Pulmonary Fibrosis. I blogged about there experience under Our Transplant Journey. Go to the very last page for the beginning of our very unexpected journey).
Randy and I had planned an empty nest life of travel, much of it adventure travel and diving. We also wanted to spend time on a lake here and there, or a river, kayaking or rafting or paddle boarding. A lung transplant brought complications to our plans. Lakes and rivers are no longer allowed…you can imagine the bacteria, right? Last summer we went to Lake Tahoe and rafted in the Truckee and boated in Lake Tahoe because these are alpine lakes and rivers, crystal clear and cold, without the risk inherent in the rivers and lakes of Texas. I wanted to go to a friend’s lakehouse this weekend, but Randy was uncertain…I understand it, he cannot go in the lake. I could paddle or kayak or swim, but Randy couldn’t do any of that. We ended up not going. It’s okay, like I said, I understand it would not be much fun for him.
While he has been cleared to dive in easy environments, like most Cozumel dives, he cannot do any type of “challenge” diving. Truthfully, he won’t be able to do some of the Cozumel dives, and I worry about it…what if he gets stung by a jelly, or scrapes against coral? He hates to wear wetsuits, but he is going to have to, just for protection, even when snorkeling. Randy has always been a sun worshipper, staying dark and laying in the sun for hours. He is no longer allowed in the sun without hats and sunscreen…he is 50 times more likely to get melanoma than the average person because of the anti rejection drugs he is on. Yes, life is different, and there is a lot to consider when making any kind of plans.
We are planning to go to Cozumel, where we have a second home, in 3 weeks. They do have medical flights, and Houston is only an hour or so away, but the medical care on the island is bare basics. Yes, that worries me. A trip to Vienna, Prague and Budapest has been planned for December so we can see the Christmas markets and displays. Again, one has to plan: The Department of Thoracic Surgery at the Medical University of Vienna runs a high volume lung transplant program with more than 100 transplantations per year. So, Randy will never be more than an hour’s flight from Vienna while we are traveling. It is doubtful we will ever travel to Africa (except perhaps South Africa) or Asia again, or remote locations like Antarctica. He has to be within a reasonable distance of a transplant hospital.
I am a passionate scuba diver, and I want to volunteer for scientific trips and go on trips to review dive services all over the world. I don’t feel too guilty about the science trips as Randy wouldn’t want to do volunteer diving anyway, but I am torn on other travels. However, I have made the decision to go on these trips, and to fulfill my aspiration to make a difference in ocean conservation. Randy supports that decision, he does not want me to give up the trips I have wanted to go on since our kids flew the nest. I appreciate that support, because I feel compelled to do as much as I can, as long as I can. I have a two week trip the end of July with the Marine Megafauna Foundations’s Ray of Hope to help with ID of mantas and whale sharks. These trips mean so much to me.
Many of the activities Randy loves will have to be curtailed, or stopped completely. I encourage him to find other things to try…there are many things he can still do. He has had two serious illnesses this year, for both he spent weeks in the hospital. Randy is doing great right now. I am so looking forward to his first trip to Cozumel in 2 years, but I will take him to get a wetsuit. Safety first.