LIFE ADVENTURES AND JOURNEYS Archives

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.

A Hydromedusa — A Comb Jelly, non stinging. We see this often in the summer here.

2015-07-05 18.44.16 queen triggerfish — A gorgeous Queen Trigger teen turning into an adult.

The entire trip has been Squid Fest! It must be time to breed.

Look at the color of this Cuttlefish! — Look at the color of this squid!

2015-07-05 19.05.52 cuttle — Squid are very intelligent.

I do not know what they are doing, but their colors are amazing!

As I said, even the small creatures can be exciting!

Want to enjoy Cozumel? Check it out! http://tamtravels.wpengine.com/category/midlife-journey/transplant-an-unexpected-journey/

Randy is in Cozumel!

June 30, 2015 By Tam Warner 10 Comments

Fearing to jinx it, I haven’t said anything about our trip to Cozumel this summer. It has been two years…and Randy is finally back in our ocean home!

Seeing him snorkel has been so wonderful…there have been times during the last 22 months that I’ve wondered if I would ever see him snorkel or dive again. We even saw an Eagle Ray flying by on our snorkel today!

Yeeeehawwww!

A few pictures while playing with my camera…tomorrow I dive!

Flamingo tongue's are the coolest mollusks! — Flamingo tongue’s are the coolest mollusks!

One of our favorite coral heads on the reef outside our home.

PS Always buy travel insurance!

Push Me Pull You

June 8, 2015 By Tam Warner 7 Comments

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 on a special night. — Randy and I … we are so fortunate that he is alive and with us. A true miracle. 2015

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.

Is it time…to simplify?

May 24, 2015 By Tam Warner 18 Comments

Our Family Home holds a lifetime of memories

The Empty Nest has changed our lives. Randy’s double lung transplant has changed our lives. Our son married 3 weeks ago (it was a lovely wedding!) and our daughter is getting married October 3. I always imagined keeping this house, our home where both of my children grew up, and having our grandchildren to stay. Now I’m not feeling that desire.

Many friends have moved away, after children leave friends don’t have as much in common and drift apart. Our house isn’t filled with kids or teens, it is big and silent and needs upkeep and care that I have neither the interest or the ability to do. I don’t want to decorate, or redecorate, or get new furniture…I barely even cook a meal. The truth is, this lifestyle does not fit us anymore.

I have lovely ideas of selling everything and taking a trip around the world…but that is not really practical given Randy’s need to be within 2 hours of a major lung transplant center. Asia is out, Africa is out, and I’m not comfortable with him going to South America either. I believe we will head to Australia next year, the medical care there is quite good. Europe is always possible, and some Caribbean destinations are close enough. We have a second home in Cozumel, Mexico…but the medical care is substandard for any serious condition. When we go somewhere together I have to check and make sure medical flights are available. We are planning a trip to Cozumel in 5 weeks…it will be two years since Randy has been there. He has been cleared to dive, but the first sign of illness and he needs to be on a plane.

I have solo trips I am taking…a citizen science trip with Marine Megafauna Foundation‘s Ray of Hope in July, a dive trip to Socorro in November, and I will be with Ray of Hope next July in Indonesia, and with a turtle rescue in Cairns as well. My citizen science and challenging dive trips have to be taken now…how can I know how many years I have left to take these trips? You have to be able to handle the conditions, and who knows how long I will be able to? That’s not negativity, just fact. If there is anything I am certain of, it is that nothing is certain.

So…the thought process has begun, and I know I need to start going through the house, room by room, and getting rid of “stuff”. That is the first step. Many steps will follow, I am sure. Who knows what will happen, or where we might end up? We will just have to ride the waves that come.

Transplant Reunion Dinner at UT Southwestern

April 12, 2015 By Tam Warner 25 Comments

The University of Texas Southwestern had their annual transplant dinner on Friday night, April 10. It was our first time to attend, and it was a humbling experience.

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

Two of Randy’s favorite doctors were there (there are several doctors on each transplant team), and two nurses who cared for him in ICU.

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

There were kidney transplantees, liver transplantees, heart and lung transplantees. We were sitting in a room of miracles.

Consider these facts:

According to the Centers for Disease Control and Prevention, more than 10 percent of American adults – about 20 million people — have chronic kidney disease. Dr. Poggio says 600,000 are on dialysis and 100,000 are on the waiting list for a kidney transplant. Yet only 16,000 transplants are done each year. (http://health.clevelandclinic.org/2014/07/4-facts-you-need-to-know-about-kidney-transplants-and-dialysis/).

The nation has a severe shortage of donated livers. More than 16,000 people are awaiting a liver transplant, and just 6,300 a year get one. More than 1,400 others die waiting each year. (http://www.huffingtonpost.com/2011/02/15/liver-transplant-wait-_n_823358.html?)

At any given moment there are over 3,000 people on the heart transplant list, and around 2,000 are performed in the USA every year.

When it comes to lungs, the waters get murkier. The lungs were the last organs to be successfully transplanted…and they are the transplantation with the most risk. The lungs are the only organ (except the skin) exposed to the air, pollution, bacteria, etc. People who need a lung transplant have to be extremely healthy to be put on the list, and many more people die waiting for a transplant than get transplanted. Most patients are rejected from the list for health reasons. Randy was one of the very, very fortunate few, and his story is an unusual one for lung transplantation because he was on life support for almost two weeks prior to the surgery. (Here are some statistics).

It was incredible to be in a room full of miracles, and to be in a room with those who work tirelessly to create those miracles. We observed moments of silence for the donors and the donor’s families. It is due to people who donate their organs selflessly who save the lives of others. I am an organ donor. Are you?

Thank you, UT Southwestern Transplant Center. Thank you for giving the gift of life.

LIFE ADVENTURES AND JOURNEYS

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