An unexpected lung transplant

9 Months Post Transplant and the Roller Coaster Ride Continues

June 1, 2014 By Tam Warner 11 Comments

In September, 2013, my husband, Randy, had a double lung transplant. The crisis happened quickly, and was certainly not anticipated by anyone. The events were severely debilitating for Randy, who was on life support (ECMO, Extracorporeal Membrane Oxygenation, and a Ventilator), not only physically, but emotionally as well. My two children, their significant others, and family friends gathered to support us, and that support was an absolute blessing. We are all so lucky to have Randy with us, but the simple truth is, life has changed for him, for us, for our family. It isn’t always easy to deal with. (I blogged about the entire experience under the category, Transplant. An Unexpected Journey). The roller coaster ride we have been on continues. It is simple fact that of all transplant outcomes, lung transplants have the least encouraging survival rates. After a lung transplant, the survival rate at 1 month is 95%, at 1 year it is 82.7%, and at 3 years it is 63%. The 5 year survival rate hovers around 50%. Why? Because the lungs are the only organ open to the air. Any germ, bacteria, irritant, pollutant enters the body through the lungs. Because the lungs are so vulnerable, thinking about the consequences of any given activity is a must.

We were able to attend the engagement party of close friends two weeks ago, and it was so exciting to actually be at a party, a social event! The party was outdoors, which made it less dangerous as far as picking up infections, etc, and we had a lovely time. Everyone was just so happy to see Randy! Last night, we were unable to go to the first birthday party for Bodie, the grandson of dear friends, because of the number of children who would be there, and apparently there has been a serious illness making the rounds at the local schools. Randy has been experiencing a few symptoms this last week, so we decided it would be best if neither of us exposed ourselves to anything else. That is just a small example of the changes in our lives.

I have been relentlessly positive about Randy’s outcome. There are people who make it to 10 and 20 years post lung transplant, and I believe Randy will be one of them. I wouldn’t be human if I didn’t worry, or if sometimes I catch my breath in fear. I do. Obviously, the life we had planned to live has been replaced by uncertainty. We love to travel and dive and hand glide and snorkel….some of this will be changed forever. I plan to take my dive trips, diving is truly my passion, and we are starting to travel a bit within the US. Next week we are off to San Antonio to enjoy a week at a home overlooking the city, traveling to New Braunfels ( a small German town known for its Octoberfests), and Fredericksburg (known for it’s quaint streets and art scene). I am a little nervous. When considering travel, we have to think about how quickly he could be seen by a lung transplant team, not just a doctor. Randy’s medications and ongoing treatment make it dangerous to be treated by anyone who doesn’t have some knowledge of transplants. San Antonio has a lung transplant team at the University of Texas Health partner, University Transplant Center. I’ve been in touch with our transplant clinic about the trip, and I’m sure everything will be fine, but this is Randy’s first trip away from home since the surgery. I imagine we will pay a visit to the Alamo, and most certainly the famous River Walk. Next month we are headed up Highway 1 (or 101?) in California from Los Angeles to Santa Barbara, to Big Sur, Carmel and Monterey, San Francisco, then a week in Shelter Cove. After, we head to Lake Tahoe for a week. Shelter Cove has air ambulances, and so does Tahoe. I’ve already checked.

Randy is doing very well, he is starting to build up strength and muscle, and his attitude is quite good. He is down to a fairly low dose of prednisone, the drug our transplant team calls, “the asshole drug”. Ha ha. At 9 months post, he is in pretty good shape after everything he has been through!

Randy’s Recovery Continues!

April 9, 2014 By Tam Warner 24 Comments

We four...grateful to be here with Randy! — We four…grateful to be here with Randy!

For those who do not know, I will recap: in August, my spouse, Randy suffered a respiratory issue, they diagnosed pneumonia, but it did not clear up after several days. He had 30% lung capacity at that time, and when steroids did not help, testing began in order to see if he could qualify for the Lung Transplant List. He did qualify, and he remained in the ICU, unable to get up or move around because of lack of oxygen. We were waiting for lungs. On August 29, he suffered respiratory failure, and was put on a machine, ECMO, which acted as his lungs (lung capacity was down to 2%, one cannot survive at that level) and a ventilator. He was maintained by an incredible team of doctors and nurses at UT Southwestern Heart and Lung ICU and kept unconscious for almost two weeks before lungs became available. He is very lucky to be alive, and we are all so grateful he is still with us! I have blogged about this Unexpected Journey from the beginning.

Here we are, 7 months after surgery. It has been tough, I cannot deny it. Randy was so atrophied from months in bed he could not walk. He is still doing therapy, although he is finally free of the wheelchair and the walker. He is able to drive, and he continues to work on his strength, which is nowhere near what it was last July. The nurses told us that for every day in bed, it takes 3 to recover. Randy still has work to do to get back to a “normal” life.

We are family! (Pointer Sisters?) — We are family! A wonderful Christmukkah 2013.

Recovery is not easy on the patient, or the family, and especially not for the caretaker. There have been many frustrations along the way, and Randy continues to get frustrated and angry pretty quickly. The drugs have a lot to do with that, and we need to just accept it, because Randy will have to take these medications for the rest of his life. I think we are here, on the precipice of understanding that life is, and will continue to be, different. There are so many drugs to take, for suppression of the immune system, for inflammation, for his tummy, blah blah blah. I didn’t know that someone could take all of that medication! There are certainly potential side effects, so we have to keep on our toes and watch his numbers carefully. What numbers you may ask? Well, he has to take his blood pressure and temp every day (all of this must be logged, of course), check his sugar and inject insulin (the medication has made him diabetic for now, we are hoping this will go away eventually), and he has to take his spirometry numbers. What is spirometry you ask? It is a test performed with an instrument called a spirometer. It is used twice daily to check how well one’s lungs are working once one is being treated for a chronic lung condition. Spirometry measures how much air you can inhale and exhale. Spirometry also measures how fast you can exhale. Spirometry values below average indicate your lungs aren’t working as well as they should. Falling spirometry numbers are what alerted us a month ago that he was in rejection, and he spent time in the hospital as they tweaked his medication. The situation resolved quickly. Whew!

So…we have to be flexible, because our lives are now unpredictable and fluid, and dependent upon Randy’s continued progress. I continue to be positive about all of this, after all, some people who have had transplants are at 10 or even 20 years plus! I’ve decided Randy is going to be one of those people. There have been difficulties, but we will get through them. We still intend to do some traveling, though he cannot travel out of the USA yet, there are places to enjoy in the good old USA which are not too far from major medical centers. I have taken two trips since the New Year, and it has been positive for both of us to get some separation, and just relax a bit. We have some reservations for trips coming up, one in San Antonio (5 hours away), and a trip to Lake Tahoe in the summer. That one is a bit of a concern because of the altitude. We’ll just play it by ear.

Life can really turn you upside down and all around, can’t it? We never thought Randy would get sick…or become ill so young! He’s only 57. We have been handed these circumstances, so we have to make the very best of them. Today we discovered he is not digesting his food well, and so he is on another medication. He also needs to lose more weight, and we all know I do! They suggested a low carb diet, so tomorrow I am headed to a place called My Fit Foods and have meal plans drawn up for us to begin a low carb regimen. Maybe this will get some weight off…I gained almost 15 pounds through this ordeal! Honestly, I was slim for most of my life, so why can’t I be one of these people who lose weight when stressed? No, I have to gain it. Grrrr. Well, I’m hoping the low carb will turn it around. We will do it together.

So, life is good. There are ups and downs, but all in all, I’d say we are a pretty damn lucky family. It is time for something great to happen now, and we are ready. Let the good times roll!

Rejection Episode

February 16, 2014 By Tam Warner 10 Comments

February 16, 9a.m.: yesterday Randy received a call from Dr. Fernando Torres’ office (he is the Head of the Transplant Department at UT Southwestern) and was advised that the tissue biopsy from the bronchoscopy performed on Friday showed possible rejection. The visual portion of the bronch looked great, but the biopsy tells another story. Rejection of the transplanted organ is not exactly music to our ears, however, most lung transplant patients experience at least one episode of rejection, especially during the first 6-12 months. It does not mean that the lungs won’t work, or will be rejected, when caught early, most episodes are dealt with expeditiously.

Randy is at UT Southwestern University Hospital where he will be treated with Solu-Medrol, a very strong prednisone. I read the orders last night and they said he would have 3 treatments a day for 3 days; of course the nurses don’t know what the protocol is supposed to be. So far this morning, Randy has not yet seen Dr Torres.

We have to expect bumps in the road. As I said, the majority of transplantees have episodes of rejection. We have to be as positive in our outlook as possible, and he will be home in 3 days, back on schedule with his Pulmonary Therapy. Life is, at best, unpredictable, and we have to go with the flow.

Facebook groups of lung transplantees have been wonderful…they are such great support. They’ve all been here, so it is good to have people who have had these experiences to discuss things with. I’ve talked to several people this morning who have had one or two episodes with rejection and they are all doing fine. As I said, it is not at all uncommon.

It is now 1015a.m. and still no doctor. I’m going to head to the hospital. THINK POSITIVELY, OPTIMISTICALLY! I know it will be okay.

So Much to be Thankful for!

February 15, 2014 By Tam Warner 7 Comments

It is Valentine’s Day, and Randy and I spent it at UT Southwestern, as the lung transplant team decided yesterday they wanted to do a bronchoscopy (a look at the lungs, outpatient surgery). For those who don’t know, my spouse, Randy, had a double lung transplant in September. He was there for months. Ah, the comfortable seats of hospital waiting rooms! I had forgotten the very special pain they give. As I sat, waiting to hear from the doctor, I read a story in the Dallas Morning News that talked about a young family, a couple with four young children, ages 1-7. The young man, 36 years old, has been diagnosed with Early Onset Alzheimers. The story tore at my heart…what a terrible, terrible thing to happen to such a young man, and to his wife and young children. She is taking care of four children, and her husband, who cannot dress, hold a child, or do much of anything, really. It reminded me to count my blessings.

Raised by wonderful parents and a peerless brother. — Raised by wonderful parents and a lifetime with my peerless brother.

There are too many to count. Certainly among them is Randy’s life, two wonderful children (young adults), a family who loves me, extended family who mean the world to me, good friends who care, and a life that has been full of love. There have been challenges, but I have always known I was loved. My life is, and has been, full of blessings, and I am thankful for every single one of them.

And here is one more: Randy’s bronchoscopy came back perfect, no problems! A celebration of 5 months post transplant. Each milestone is a reason to be happy. Speaking of which, I hope your Valentine’s Day was wonderful!

Updates on Randy and Year of the Horse

February 6, 2014 By Tam Warner 2 Comments

Someone told me the other day that this is the year of the Wooden Horse (Chinese Astrology). I was also advised that the previous two years were “water” years, 2012 was the Water Dragon, followed by 2013’s year of the Water Snake. Apparently, the past two years have been low on energy and kind of sad. I can certainly relate to that. But the year of the Wooden Horse is supposed to bring better times. According to Susan Levitt, “The Wood Horse year is a time of fast victories, unexpected adventure, and surprising romance. It is an excellent year for travel, and the more far away and off the beaten path the better. Energy is high and production is rewarded. Decisive action, not procrastination, brings victory. But you have to act fast in a Horse year. If you are not 100% secure about a decision, then don’t do it. Events move so quickly in a Horse year that you don’t want to gallop off in the wrong direction.” Ok. I’m ready. I have an adventure coming up the end of February…off to Thailand and Myanmar for diving. I am so looking forward to it. CLICK TO TWEET.

Randy is recovering from his double lung transplant very well, but his father is experiencing health issues, and that is holding back some of his recovery, I believe. We are in the process of trying to get some home health care involved, meals delivered, and someone to help Ran’s dad a few times a week with tasks he wants done. Hopefully that will free Randy up a bit to get back to PT full time and other recovery tasks. I hope so. With lung transplant, there is ONE window, 6 months to a year, to get your lungs to their absolute best. After the one year mark, they begin to age. It is critical that Randy work as hard as he can to get as much lung volume as possible.

Midlife and the empty nest offer great opportunities, but there is also the other side of midlife: our illnesses, parent illnesses and the loss of your parents. And your friends. So far in 2014 a friend has lost her husband suddenly, an old friend has passed away, and my biological father passed as well. My aunt fell down a flight of stairs and broke her leg and her collarbone. As in all times in our lives, midlife definitely has its set of challenges. However, the year of the horse didn’t start until Feb 1, and all of that happened in January. So I still have hope for 2014! I received a surprise invitation to see Sting on Sunday night, so that is an unexpected adventure. One thing I have always known is that you have to go while you can. As far as possible, and within reason, go and do what you want to NOW, while you are able. Truly, you only have this moment.

So…. Go Horse, Go! Run for the Roses! Make the Year of the Wooden Horse, 2014, a great year! Oh, and Happy New Year to you!

Oh, those wonderful Dons

January 27, 2014 By Tam Warner 13 Comments

WHAT a great weekend it has been! These guys are simply the best. Here’s the story:

My husband, Randy, had an unexpected respiratory collapse last August, and in September, after 12 days on life support, he had a double lung transplant (I did blog during that very unexpected journey). During this incredibly difficult time, friends rallied like…well, like friends! Among our wonderful, fabulous friends, is this group of guys, Randy’s childhood and college friends, a group known as “the Dons”. Why are they the Dons? Well, some of the story isn’t really tell-able, but long story short, there was a guy in their high school that they knew, and they just started calling each other by his name, which was “Don”. Whatever. For some reason, it seems to fit. You have Don, Don, Don, Big Don, and Donnie. Oh, and don’t forget Don.

This group of guys is truly a novel. And a fascinating study of male friendship. When they found out Randy was ill, they didn’t wait, they grabbed a plane and came to see him. They came from California, Chicago, Tennessee, Louisiana, and Atlanta. They came to laugh with their buddy who was on the lung transplant list and to offer me their love and support. These guys and their significant others have been so kind to me, so loving, so supportive. Like family. After Randy went into rehab in October, they all came in again, to celebrate the fact that their friend made it through. Just before they left the first time, while Randy was still conscious, they decided that they would all come back in January, again, to celebrate Randy’s recovery. They were true to their word, and some brought wives and girlfriends. Of course, the girls couldn’t really talk together because the Dons are LOUD. Really loud. And once the stories get going, you don’t want to miss a single word.

Stories? These guys have stories. I mean, from grade school on, they have stories! Most of them I have heard, but they are so entertaining, I can listen for …. 30 years worth! Of course, we have gotten together on and off for many years, but there have been times when not one word has passed between them for like 7 or 8 years! They pick up, right where they left off. Amazing. They are there for each other for weddings, christenings, funerals, divorces, Chicago Bears games (they are Chicago boys, except one who became a don in college)…they have supported each other through life’s trials and joys. Guy trips, couple trips, I have never spent a second with any of them that hasn’t been great. Both of my kids (yes, I know they are 26 and 23 but they are still MY kids even though my son is engaged to be married!) were here for the dinners and stories this weekend. Randy’s dad, still Mr. Minton to the Dons, joined us one night. One of my close friends came and observed as well…with her mouth hanging open! As I said, they are LOUD, and there is NOTHING sacred. Not even the jokes about how they should have pulled the plug on Randy, complete with flat-lining noises! They are just too, too funny.

Lil Murph (aka Don) in the middle of a story

Randy had Chicago Italian Beef and Sausages flown in from (you guessed it) Chicago. If you have seen the SNL skits about “da Bears” and “Ditka”, and there is a Ditka commercial out now where they grill the sausages on an airplane, you will know how important this food is to the Bears fan. As exhausted as I am, I am happy to have had such a fun, and warm, weekend with friends. The truth is, I think this was the very best medicine Randy could possibly have had. I think it energized Randy and gave him more incentive to work harder and harder to regain his health.
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So guys, Mike, Tom, Dave, Tony, Brian, and Pete (who was not able to be here this weekend), I hope you know how much I appreciate and love you. I hope the Dons will be together again, for many many years of love, stories, and laughter. Especially the laughter!

Transplant. An Unexpected Journey

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