An unexpected lung transplant

Lung Transplant: The Unexpected Continues

December 19, 2015 By Tam Warner 8 Comments

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.

More Christmas lights! — We love going out to see the Christmas lights every year.

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.

We should all strive to be children at Christmas! — We should all strive to be children, and to have gratitude, at Christmas!

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!

September 24, 2015 By Tam Warner 2 Comments

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

September 10, 2015 By Tam Warner 13 Comments

Randy is the last guy on the left, I'm next to him. — Randy is the last guy on the left, I’m next to him.

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!

Our close friends are a gift, we are the back four!

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.

Randy with two of the most amazing doctors one could ever meet: Srinvivas Bollenini and Vaidehi Kaza.

Randy with an ICU Nurse and the nurse who is the Transplant Clinic coordinator, Ann Cuddy.

We had fun riding bikes on the beach! — We had fun riding bikes on the beach with family in March 2015!

At Shamrockin' for a Cure, March 7. — At Shamrockin’ for a Cure, March 7.

Celebratory brunch at Lark on the Park. One year post!

19081_10206995981322030_292342406580576243_n — Alexandra and some of her “other moms”.

12896_10206550341181305_9115443269205552572_n — We welcomed a new member of the family in 2015!

t 14 jill don tam ran — In Lake Tahoe with Jill and Don 2014.

In January 2014, friends from around the country came to celebrate Randy's recovery. — In January 2014, friends from around the country came to celebrate Randy’s recovery.

11377223_10207104327270252_2938465203849296317_n — Family!

11412346_10207104573196400_8125096040605754638_n (1) — We will have two new family members this year!

11800161_10207021964137173_400018036028204392_n — Holly, Mande, and Dana are always there.

xmas eve 13 all of us — Celebrating the holidays 2013 with friends whom regard as family.

Thank you.

Why Children Freak Me Out

August 16, 2015 By Tam Warner 20 Comments

Now, I don’t mean they freak me out in general. They freak me out for very specific reasons.

Those reasons have to do with my husband, who had a Double Lung Transplant almost two years ago. (Lung Transplant, An Unexpected Journey!) The journey has been long, and we thought after year one things would get much better…that was, sadly, not necessarily true. Randy, who is on anti-rejection drugs which lower his immune system, has caught several viruses this year, and has been hospitalized four times. Each time is frightening. Lung Transplants have the shortest survival rate of all transplants. Why? Because the lungs are constantly exposed to the air.

What does that have to do with children? Children carry germs. A lot of germs. A single sneeze can land bacteria and germs on doorknobs and countertops long enough to infect others. Covering of the mouth and nose when coughing and sneezing can help tremendously, and so can washing your hands. Children, as we know, don’t cover their noses and mouths (especially when they are little) and don’t wash their hands unless they are told. According to the National Institute of Allergy and Infectious Diseases, children have an average of twelve colds per year. Twelve on average! Yikes!

I had a doctor’s appointment yesterday and I wore a mask, knowing that the OB-GYN office would be filled with babies and tots. Everyone asked me what was wrong, and I simply told them the truth. I cannot risk taking illnesses home to Randy. Of course, risk is inherent in every situation, but with Randy, precautions are the name of the game.

Germs are at their very worst in the kitchen. Did you know that washing a dish towel is not enough? Or washing a sponge? It has to go into the microwave for two minutes in order to be germ free.

We just have to be very, very careful. At this point in our lives, our children are getting married. Grandchildren will bring more risk…hopefully we have a few years until that time. When the babies come, we will just have to be ultra careful about washing items with antibacterial soap, microwaving sponges and towels, and using face masks. It worries me though. Of course we will want to be around our grandchildren as much as possible. We’ll have to take precautions.

Careful is our new byword.

**photo from Creative Commons.

The Roller Coaster of Transplants

July 11, 2015 By Tam Warner 23 Comments

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.

Photos: Excitement on the Reefs of Cozumel!

July 9, 2015 By Tam Warner 11 Comments

Not only dives! The snorkeling has been amazing as well. The little stuff has been incredible! Diving isn’t all sharks and huge pelagics, it is also the tiniest members of the ocean community that fascinate.

Randy and I have been snorkeling every day for the first time since his double lung transplant almost two years ago! He has been thrilled to be back in Cozumel. We have really been enjoying our time here, and on our snorkels we have seen several reef squid hanging around. I didn’t know if they were cuttlefish or squid, and a couple of readers let me know they are squids…Caribbean Reef Squid or Inshore Arrow Squid, they are still fascinating, even magical, creatures. On Tuesday, July 7, we were doing our usual route over the reef system in front of our house, and I saw a few squids. After looking around, I realized it wasn’t a few, it was an aggregation! They fly in the water like a squadron, and they were everywhere. When I swam between them they separated into groups, then regathered. They are intelligent, and you can see a lively curiosity in their large beautiful eyes. Like an octopus, they change colors, white to lavender to iridescent. I wanted to stay and watch them for hours, but finally Randy dragged me away.

Since the hurricane Wilma in 2006, sea horses and pipefish are hard to find. On Palancar Gardens on July 6, the dive guide, Yasser, found a pipehorse! It was so tiny, even for a pipefish! So tiny, and so precious! Again, I could have spent the dive observing it, but I had to move on.

My dive guide points out the Pipehorse...so tiny! — My dive guide points out the Pipehorse…so tiny!

Incredib le Pipehorse. — Incredible Pipehorse.

Prior to this trip I replaced my prescription dive mask, which was at least 5 years old. I feel like I am seeing a whole new world! Nothing like being able to see! For instance, I have always loved Christmas tree worms, but now that I have my new prescription I realize they have a body, or tube, which is also quite pretty! It is so easy to miss things…I could spend 24 hours a day for years on just this one reef and never see it all. It changes minute to minute.