An unexpected lung transplant

The Dons are coming, the Dons are coming!

January 23, 2014 By Tam Warner

They will blow into town on Friday! I will be sure to give a full report of Randy’s childhood pals, who are coming in for the 3rd time to celebrate the fact that Randy is here after being on life support for 12 days and having a double lung transplant! The last time they saw Randy he was still at Zale Lipshy in rehab, and unable to walk. They are in for a treat…their buddy is getting around without any help.

In case you have missed previous blogs, my husband experienced a respiratory failure back in August, then another in September. He was put on an ECMO machine while he remained on the lung transplant list. All of this came as a huge shock, and Randy’s friends immediately rushed in to help, to soothe, to make their pal laugh, and to be supportive of Randy’s family.

These guys have been the best…incredibly supportive of Randy, but more so for me! I love the dons (don’t even ask why they call themselves the dons, goes back to high school), and I am looking forward to seeing them under, if not normal, at least more comfortable circumstances!

MERRY CHRISTMAS TO ALL!!!!

December 24, 2013 By Tam Warner 4 Comments

Tonight is Christmas Eve, and while we are not having our usual big bash, we will still number over 20! What a year. We are grateful that Randy is here with us, having survived a double lung transplant and 3 months in the ICU. We have gained with the birth of Bodie Torres Koye, 3rd child of Jessica Torres Koye and Stevan Koye. Tonight we remember my mother, Jean Warner, who passed in June; and Gene Jacoby, who passed in March. Gene’s companion, Paula, also left us in March. 2013 has been a tumultuous year, full of ups and downs, but that is life. We will celebrate while we can!

“Our hearts grow tender with childhood memories and love of kindred, and we are better throughout the year for having, in spirit, become a child again at Christmas-time. ~Laura Ingalls Wilder”

Here are some photos of the season, and Merry Christmas to all!

and a few more words of wisdom:

Roses are reddish
Violets are bluish
If it weren’t for Christmas
We’d all be Jewish.
~Benny Hill

In the old days, it was not called the Holiday Season; the Christians called it ‘Christmas’ and went to church; the Jews called it ‘Hanukkah’ and went to synagogue; the atheists went to parties and drank. People passing each other on the street would say ‘Merry Christmas!’ or ‘Happy Hanukkah!’ or (to the atheists) ‘Look out for the wall!’ ~Dave Barry, “Christmas Shopping: A Survivor’s Guide”

On the Receiving End

December 16, 2013 By Tam Warner 12 Comments

This post is part of a bloghop from the Women of Midlife, Midlife Boulevard. Topic? The best gift you ever gave or received!

Randy with his children, Wes and Alexandra

I thought about writing a very profound post about my husband’s miraculous double lung transplant in September of this year…but instead, I think I will just say it like it is, without the bells and whistles. After 2 weeks on the transplant list, and 2 more weeks on life support, I can easily tell you the best gift I ever received: the day my husband received lungs. Without that gift, he would not be here.

The gift is, and was, multifaceted. Number one, Randy is alive and breathing. The gift given by the donor and the donor’s family benefited untold numbers of people. It benefited me, by giving my husband a second chance at life, and giving US a second chance to be together. Number two, it benefited several other organ recipients who were receiving the heart and liver in other operating rooms, and their loved ones, with whom we shared that waiting room. Number 3, it benefited everyone who cares about our family, and after the prayers and love and assistance and positive energy that came our way, apparently there are a lot of people who care, which is a gift in itself! But, number 4 is the most cherished aspect of the gift.

The transplant returned their father to my children, Wes, 23, and Alexandra, 26. The hardest part of the entire surrealistic event was witnessing the agony of my children. To see their suffering was the worst experience of my life, and between you and me, I’ve had a few bad moments. They truly believed he was going to die, and they would never be able to talk to him again. The kids have inherited Randy’s less than optimistic view of life (that is putting it very nicely) while I tend to view life through a lens of optimism. I have friends who would tell you that I am “idealistic”, meaning unrealistic and on another planet, but I agree with George Carlin when he says that behind every cynic is a disappointed idealist. I confess that I do have a very stubborn idealism, but I also say I have a fairly well tuned intuition working for me. It never really seemed possible, or realistic, that Randy would actually die. I had other friends who felt that way, too. Friends who texted me the night before Randy would get his lungs and said, “I just don’t believe he will die. It isn’t his time.” The spiritual implications of that are best explored in a future post, but that was exactly how I phrased it as well, “It isn’t his time.” Wes and Ally did not have that hope.

It has always been a conundrum for me, is it better to be prepared for loss, or to lose someone quickly? There are arguments to both sides, and we’ve heard them all, so I won’t elaborate on them here. Randy’s decline happened so rapidly that no one was prepared or expecting such a drastic turn of events. He was not even on oxygen! Most people on the transplant list are somewhat debilitated, on oxygen, not living an active life. 3 weeks before Randy was on life support he was snorkeling and walking in Mexico for exercise, daily! Yes, we knew there was a breathing problem, and it had been diagnosed as sarcoidosis, but one of the top sarcoid doctors in the country said he didn’t think it was sarcoid. He recommended a biopsy. We explained to our young adult children that we needed more testing. 4 days before that biopsy was scheduled, Randy crashed, and the lung function he lost in just a couple of days was irretrievable. In another couple of weeks, another crash put him on life support for almost twelve days. Everything happened so fast, like a row of dominoes going down. It was an episode of the Twilight Zone.

Wes and Ally were devastated. I don’t know any other way to put it. While Randy was on life support, Ally would come to the hospital and work from the waiting room, while Wes would dash in, and dash out, unable to stay because he knew there was nothing he could do. When I was able to let them know there was a 90% chance suitable lungs had been “found”, their hope was rekindled. Even though they are (mostly) grown up, they are still my babies, and seeing the fear and the horror and the desperation in their faces was truly one of the worst moments of my life. I cared more about their reactions and emotions than I did for my own, because I lost my dad when I was 25. It is terrible to lose a parent at any time, but to lose them young is beyond sadness. The grandchildren my dad never saw, the lack of time, the knowledge that there could have been so much more to his life, to our lives. It is a sadness that anyone who has lost a parent before their time knows well.

Randy is doing well, remarkably well for a guy who was about as close to the end as one can get. (And it was not Sarcoid, it was IPF, Idiopathic Pulmonary Fibrosis, one of the worst lung diseases you could ever be diagnosed with). Seeing the joy on the faces of my children when their Dad came out of surgery was the best gift I have ever received. Normally I prefer to be the giver…but being on the receiving end of a gift that kept my family together has truly been the gift of a lifetime.

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Clear Lungs and No Sign of Rejection!

December 9, 2013 By Tam Warner Leave a Comment

Today was a long one, but as you can tell from the title of this post, it had a great outcome! Today Randy had “clinic” (blood test, xray, spirometry, doctor’s appointment), followed by a bronchoscopy, a test that allows the doctor to look inside Randy’s lungs’ airways, called the bronchi. The doctor inserts a thin, flexible tube called a bronchoscope and the tube is passed down your throat into your airways. The doctor took pictures, and sent away a couple of tissue samples, but came out all smiles, and informed me that the lungs were clear, with no sign of rejection. Holy Shiza, Batman! That is some of the best news an organ transplant patient can hear.

It has been 3 months since Randy’s double lung transplant. 3 months. It is difficult to believe he has come this far in such a short period of time….as I sit here with our Christmas tree softly glowing, and a fire in the grate, it seems like a nightmare long ago, but it was a harsh reality. The hospital waiting room, the doctors, the staff, the families…it seemed as though it was an alternate universe, one we had somehow strayed into and could not get out of. Yet, here we are. It was interesting today to see one of the doctors who hadn’t seen Randy since surgery, and his absolute amazement at not only Randy’s progress, but that he is alive at all. We discussed the fact that although his friends and family are so thankful and grateful every time we look at him, he doesn’t have any memory of being so sick, and it all happened so fast, he was not even on oxygen when he went into the hospital. Randy did not experience much debilitation prior to his two “crashes”, so his experience and attitude is somewhat aggravated at how his life has changed, rather than daily wonder that he is still alive. It is a strange dichotomy…and sometimes difficult to bridge. He does ask questions, and I tell him about what happened in as detailed a fashion as I can, but the filter in which we see the past 4 or 5 months is quite different.

I think daily of the donor’s family, and wait for the day I can write them a letter and tell them how much their loss has changed our lives. A part of their loved one lives on…not only in Randy, but in others whose lives were saved by this donor. Without this donor, Randy would not be here. I cannot imagine a greater gift given by anyone. I ask you, if you are not already an organ donor, please reconsider that decision. To give life is the ultimate gift. So, ask yourself, do you have the heart to be an organ donor? I hope so, I hope we can all find it within ourselves to be so generous.

Randy is doing very, very well. As well as anyone ever hoped. I know his recovery will continue. His is a happy story, unlike so many others who die on the waiting list, or who are not approved for the waiting list. There is so much illness, so much need in the world. Cystic Fibrosis and Idiopathic Pulmonary Fibrosis are terrible diseases. Any donation or help given to assist in finding a cure, or even a treatment that works, would be appreciated by many. Here are a couple of ideas for you: Pulmonary Fibrosis Foundation, Cystic Fibrosis Foundation, and, ironically enough, our dear friends, Tom and Nancy Murphy, are involved with Shamrockin’, a fundraiser for Cystic Fibrosis which takes place once a year in Alpharetta, GA, in March of course, near St Patrick’s Day. If you cannot make the event, you can still donate goods for auction! There are a million ways to make a difference. Choose a cause and do what you can.

A True Thanks Giving

November 26, 2013 By Tam Warner 10 Comments

Thanksgiving has never been a favorite holiday for me. It has always meant, “ok, now it is time for the real holiday season”…and it means mashed potatoes. With gravy. Anyway, this year is different. Thanksgiving 2013 is, for our family and friends, a true Thanks Giving.

On August 2 of this year my husband, Randy, was admitted to the University of Texas Southwestern University Hospital with severe lung inflammation. Too ill for a biopsy, no one really understood what was happening to him. After several rounds of treatment with prednisone (the usual treatment for lung inflammation), the Lung Transplant Team approached us about testing him for inclusion on the Lung Transplant list. Double Lung Transplant. Those are extremely frightening words….. end of the line words. A lung transplant, is of course, for individuals with such severe lung disease that no other medical intervention is possible. Testing began.

In order to be put on the Transplant List, one has to be at the correct weight, and have no other health issues. They do a thorough physical…CT scans, xrays, colonoscopy, EKGs, EEGs, you name it, they check it. After a week of these tests, and sitting on the edge of our seats, Randy was put on the lung transplant list. He was actually number 1.

Randy’s father flew in from Florida; my son, Wes, cut a vacation short and rushed to Dallas; our friends and family began to pour in to visit with him. We thought he would get lungs within a week or two, but no appropriate lungs became available.

On August 29^th, Randy “crashed”. His lungs failed. The Transplant Team made a decision to put him on ECMO (Extracorporeal Membrane Oxygenation), a machine which takes over for the lungs, oxygenating the body. At the same time, Randy was put on a ventilator. The purpose of ECMO and the ventilator was to act as “a bridge” to transplant. What does that mean? It means it is the last ditch effort to keep the patient alive until lungs become available. Randy was kept in an unconscious state, on ECMO and the vent, for 12 days.

Those 12 days had to be the worst days in the lives of my children as they struggled to deal with a blow that few young adults face. Every day on life support takes your loved one’s strength, and increases the odds of some kind of complication. I lost my father when I was 25 to lung disease, and I lost my mother in June of this year of lung disease. I felt as though I had gone into the Twilight Zone, or at the very least, an alternative universe. Those poor transplant docs….they saw me every day, all day. I kept the idea of Randy’s possible death as far from my mind as I could, and concentrated my mind and heart on “lungs for Randy, lungs for Randy, lungs for Randy”. I made sure the transplant team thought about Randy constantly, because I was constantly in the ICU.

An incredible coming together of people from all walks of life began, and it happened mostly on the internet. Say what you will about Facebook…it reaches a lot of people FAST. My blog, www.travelswithtam.com/blog, also kept people up to date on what was happening. People prayed, they sent healing thoughts, positive energy, and it was almost as if I could feel those energies around us. A friend of ours even had Randy on the Dallas Cowboys prayer list! Friends came and prayed with us and for us. Churches and Synagogues around the world put him on their prayer lists as word spread. On day 12, at 11a.m., I was informed that there was a 50% chance Randy would be getting lungs that day. The longest day of my life began. At 6 a.m. on September 10, he was taken to the Operating Room to receive new lungs. A miracle? Oh yes, it definitely was a miracle.

Tom, Dave, Pete, and Brian with Ran at Lipshy

Randy’s recovery is far from over, but he came home on October 30. He has Pulmonary Therapy 3 times a week, sees the doctors of the Transplant Team at least once a week, and has other medical procedures as well. Blood tests and xrays are done weekly, and there are other procedures, such as Bronchoscopy (where they go down with a tube and look at the lungs) on the schedule. He is not walking on his own yet as his muscles completely atrophied, but he is home. He is alive. He is breathing.

So this Thanks Giving is a very special one for our family and friends. We give thanks for Randy’s survival I doubt that most people believed he would live, I know my children didn’t. They truly believed they had lost their father, and they were heartbroken. But he is here, with us, in our family home once again. The four of us are together. We thank, from the bottom of our hearts, the donor and the donor’s family. They will be spending these holidays without their loved one, but I hope they take comfort in knowing that he or she (we don’t know which) gave life to many others on September 10. The same donor’s heart and liver were also used to save lives. What a gift the donor’s life was! What a person and family of generosity and compassion, and how grateful we are to them!

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So thank you. Thank you to all those who prayed or sent one single wish Randy’s way. Thank you for the meals, the treats, the visits, the flowers, the words, the phenomenal support we felt during that time of challenge. Thank you to the power that saved Randy’s life. Was it God? Was it love? Whatever belief system was called upon, I think the collective power of so much energy and love created a miracle.

Thanks Giving will be a day of celebration of life and giving this year, and for every year to come. Happy Thanks Giving, from our house to yours.

Update on Rand-O the Double Lung Transplant Patient!

November 16, 2013 By Tam Warner 6 Comments

A Lung Transplant is not a walk in the park. Randy has been home for a little over two weeks. He is doing well, getting stronger, and trying to “get with the program” of his new life. A life without Velveeta seems to really be challenging for him. We had friends over for dinner and cards last night (such a normal thing to do!!!) and they were quite surprised about the Velveeta issue. “That is the worst food for you ever! Do you know how many preservatives there are?” Greg told him. Randy informed him that Velveeta was the absolute best food on earth, that when he was younger he used to cut off big slabs of it and eat it with mayo. EWWW. I don’t like Velveeta at all, and I’m not huge on mayo, so that combination kind of made me a bit ill. Of course, Mr Double Lung Transplant should NOT be eating Velveeta. At all.

Food seems to be the major stumbling block. No salt, sugar, velveeta, red meat once a week…these requirements are incomprehensible to Randy. He says he will do better. I think he is feeling the after effects of the trauma he has suffered, both physically and emotionally. “Annually, about five million patients stay in an intensive care unit in the United States. Studies show that up to 35 percent may have symptoms of PTSD for as long as two years after that experience , particularly if they had aprolonged stay due to a critical illness with severe infection or respiratory failure . Those persistent symptoms include intrusive thoughts, avoidant behaviors, mood swings, emotional numbness and reckless behavior.” (http://well.blogs.nytimes.com/2013/07/22/nightmares-after-the-i-c-u/?_r=0). Research shows that being intubated (put on a venitlator) is exptrememly traumatic, and Randy was on one for nearly 3 weeks. It is hard to imagine going through what he did.

In the article, Jan Hoffman also brings up sedation. Although sedation is absolutely necessary in the ICU, it also gives the patient seriously intense hallucinations which can return, or flashback, for years afterward. The worst offenders are apparently benzodiazepines, anti anxiety meds like Valium and Ativan. Randy was on these medications without stop for over a month. The medication he was constantly given was needed, don’t get me wrong. Randy fought the ventilator and was very anxious, even when unconscious. He does have amnesia, he does not even remember his last “crash”, or respiratory failure, has no memories of ECMO or the ventilator, or even the surgery. I think Randy’s expectations and experiences were so different from the rest of us that we are having, perhaps, some difficulty in communicating and understanding one another. The experience for him had to be harrowing and completely overwhelming. It will take time for the side effects of these medicines to wear off. We just have to give it time.

For the most part, Randy is doing great. He does Pulmonary Therapy 3 times per week, has xrays, blood tests, bronchoscopies, CT scans, and next week, an infusion of medication which is an anti viral. There is a virus (sorry I cannot remember the name of it) that 85% of people have had exposure to, and therefore they have the antibodies for it. However, Randy has never been exposed to the virus. His donor had been exposed, so the infusions are to try and rid the donor lungs of that virus (as far as I can understand). So, UT Southwestern and the Transplant Team are still a huge part of our lives. But he gets better and stronger every day, and we are grateful to be here, in our own house, at home, together. He is here. That is all that really matters.

Transplant. An Unexpected Journey

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