An unexpected lung transplant

Post Transplant is not easy

September 15, 2013 By Tam Warner 4 Comments

We are 5 days past Randy’s double lung transplant, and we are so grateful for his life. It just doesn’t seem like reality, it is so hard to process everything we have gone through. When he is awake it is difficult to know what he understands, and more difficult to understand what he wants. He tries to communicate, but with the tube of the ventilator still in place, he cannot speak, and he becomes very frustrated. My son and daughter have been somewhat taken aback by his attitude….but have begun to communicate with him as best they can. I am still filled with the joy of having Randy alive and getting well, but I confess, he has been a bit on the difficult side. As I said, Wes calls him “tube dad” as opposed to the real dad.

Ally and her Da at Wesley's graduation in March 2013 — Ally and her Da at Wesley’s graduation in March 2013

My daughter is very sensitive, and I don’t think she realized that when he woke up after receiving his lungs, that he would be so ill. I tell her we must think about what it might feel like for him: he was unconscious for almost 2 weeks, unmoving, on many different pain killers and anesthetics, to wake up with so much pain, and to be so weak that he could barely lift his fingers. He sometimes seems to be able to communicate what he wants, of course, business is the first thing he thought about and he was able to communicate what he wanted to Wes. Business! Ugh! This is the man who, while I was in labor with Alexandra, who ‘shushed’ me because he was on a business call in the labor room! Some things never change. A dear friend, Lauri, who is a speech pathologist, pointed out to me tonight that he thinks he is speaking….he opens his mouth and thinks he is talking, and so he is frustrated that we cannot understand him. I really believe the tube will come out tomorrow. He has been exercising his lungs by breathing on his own (initiating the breaths on the vent), and the doctor says he has done well today. We will all be happy to have that tube out and see him begin his physical therapy. He may also need some speech therapy.

I took the day off today, Rex was up there, and Ally spent an emotional afternoon with him…he was in pain, and she was very upset that she didn’t feel she could help him. I told her not to go for a couple of days. He is in the best care possible at UT Southwestern’s cardio-pulmonary ICU, they can actually do more for him than any of us can.

I need to make an appointment with the transplant coordinator and learn everything I should be doing to prepare the house for him…I’ve put in all hardwood floors and removed some of our oriental rugs, sanitized the vents, and had the house checked for mold or any other allergen. Dust is the enemy, and I have had our dogs trimmed down…instead of Goldens, they look like blonde labs. I have 3 air purifiers, but I plan to buy more. Ally has moved out and taken her cats (Randy cannot have cats in the house), Wes and Carisa are looking for a place in Austin and so their dog and cat will be out of the house by the time Ran gets home. Our house will head in the direction of Zen….as little as possible out that could get dusty. It will be quite a job. I also need to get back to my work schedule, which I’ve made on Wednesdays and Thursdays, so I can get my seniors finished up. I will not be taking any more students, at least for the next year or so. I also cancelled my trip to Komodo in January…I was going to do a 2 week dive/research trip with the Marine Megafauna Foundation, but Komodo is so remote….I need to stay a bit closer at hand. It was tough to cancel, though, it was a trip of a lifetime…but I know there will be another opportunity.

Tomorrow, I am supposed to be in court for the probate of my mother’s will….then I will go to the hospital and see if Ran can communicate better without the tube. I’m sure it is very confusing.

Randy Day 2 after Lung Transplant!

September 12, 2013 By Tam Warner 2 Comments

September 11 and 12

Well, the doctor ordered me home after Randy’s transplant surgery, so I went home, ate everything I could find, and went to bed. I slept all night, and most of the next day, and all last night. I had no idea how exhausted I was. I was completely out of energy. I think every single cell, every muscle, every sinew in my body was coiled as tightly as a spring….the spring is relaxing now…. Sleep has helped, really helped.

So here I am at the hospital. Randy’s eyes actually see…they look alert, and I know he is more aware than he has been for almost two weeks. I cannot believe it, it is truly a miracle. The docs and nurses are all smiles….and so am I. I can’t wait for the tube to be out. That will be a huge step forward. There is no way to tell how long he will be in ICU, in the hospital, or in rehab….I think Randy will get back on his feet much quicker than they expect, but we’ll see.

As Randy was back in the ICU after surgery, I saw my waiting room “mate”, Mary, and her daughters coming out of her husband’s room, crying. He is gone. He woke 4 days ago and spoke to them, on the 10^th, he slipped away. He was 71, had a lung transplant last year, his kidneys failed, his heart was failing, and he’s been in the hospital for 5 months. My heart goes out to Mary and her family….I hope their friends and family will succor them and give them strength.

Poor Randy was very frustrated today….awake, somewhat alert, still on the breathing tube although he is breathing room air and on his own. He wanted to tell me something….he can barely lift his hands up off the bed (but made progress all day long), and he is lifting his legs. We went through the alphabet, tried to let him write, but his dexterity is just not there yet. Wes came in this afternoon and we continued trying to figure out what he wanted. We are still unsure, but told him when he is off the tube tomorrow we’ll work on it again. Hopefully that will be tomorrow.

It is amazing and miraculous to watch him breathe. It seems so ….normal. It was difficult to watch his muscles contract so much when he was breathing before the surgery…he was working so hard. I still cannot get over this miracle: Randy has new lungs. I hope the donor and family realize our gratitude and how we bless them.

I am still exhausted. I suppose I will be for a long while. There has been stress the last few years for many reasons, but particularly this last year while Randy worsened, and my body is demanding rest. Watching Randy this past year as his breathing became more labored, shallower…..was extremely traumatic for me because of how much it reminded me of my dad. I lost my dad when I was 25 to Emphysema. I spent my teen years and early twenties dreading the progression of his disease, nervous of his breathing, and his death was a devastating event in my life. When Randy and I were in Denver, at National Jewish Health, and the doctor let us know that this was most likely a very serious lung disease, Randy apologized to me for doing to me what my dad did (as if either of them had a choice). Yes, of course Randy’s increased breathing issues reminded me of my father, and filled me with dread and terror. He apologized on his way to get ECMO by saying, “I’m sorry I’m doing what your dad did”…I told him NO, this is different. And so it is. Dread and terror have been replaced with hope and joy for Randy…and for our life together. No one knows how long any of us have on this earth…but I can tell you that a miracle happened for us on September 10, thanks to collective prayer, love and positive thinking, and thanks to an amazing team at UT Southwestern. Watching Randy on life support for 11 days, waiting and hoping and praying and meditating for lungs, was a hell I find difficult to describe. I won’t even try.

Thank you to Jane, to Brad, and to Allison and Donna! You have lifted my spirits, and I thank you for your generosity.

We are all filled with joy and hope now! I’ll keep you updated…tomorrow will hopefully see the end of the breathing tube!

Miracles do happen

September 10, 2013 By Tam Warner 13 Comments

September 10, 2013

The four of us and Pop Pop, Randy's dad — The four of us and Pop Pop, Randy’s dad

The last 24 hours have been a whirlwind of emotion. Yesterday, about 11a, Dr. Builineni informed me that Randy had an offer of lungs. He said the offer looked very promising, and there was a 50/50 chance that Randy would be transplanted. He said he would keep me informed. Of course, my heart was racing, and I was hopeful and scared and worried and excited, and relieved…and probably another 100 emotions in there as well. My father in law, Rex, came to visit….and again, I had to keep my mouth closed, which is not the easiest thing for me to do. Offers had come before…and not gone through, so I didn’t want to raise anyone’s hopes on a 50/50 chance. My friend, Harmony, arrived and surprised me with a delicious assortment of goodies: vitamin water, energy mix nuts, chicken salad (it’s the thought that counts and my daughter ate it), and wonderful broccoli salad. Best of all, she brought Luna Bars! So thoughtful, and very cheering. It also kept my mind off of the offer…I knew I wouldn’t hear any more about it for hours. I was right.

Alexandra came from her job to work at the hospital, as more hours went by. The doc came back by and said it was looking really good, he was ordering tests from the donor, he would keep me informed. At that point, the cat was out of the bag and I filled Alexandra in. I told her it would be hours and hours before we knew, probably, and not to get her hopes up too high, but to still keep praying or thinking positively about it. Finally, I got her to go home around 6p or so, I think.

A very long evening followed, with my pacing around the ICU, eavesdropping where I could, basically learning nothing until about 10p. At 10p the doctor called and told me there was a 90% chance this was a go. He said the match looked great. At that point, I started shaking.

There is always a chance that the surgeons who go to remove the organs may find something wrong with them….something the testing didn’t reveal. So you never really know it is a go until the surgeon (the harvesting surgeon) has seen the organs. At 1 a.m. they booked the Operating Room at 6a.m., and I knew at that point we were at 99%. I felt blank, almost disembodied, but I managed to call Alexandra and Wes to let them know to be at the ICU at 5a. I waited until 5 a.m. to call Rex…I really did not want him up worrying all night. He’s one of those guys who gets up at 6 a.m. I grabbed a couple of hours of sleep in the “family room” ( a private room for families off of the ICU) and set my alarm for 430a.m.

When I went to Ran’s room at 445a.m. they were already there, doing a 3^rd bath prep, and consolidating tubes and lines. They wanted him “on the table” at 6 a.m. I spoke with the anesthesiologist, the nurses, then the surgeon, Dr Wait. I signed lots of documents, and the kids arrived. A quick kiss and a few words to my sleeping darling, and off he went. Ally, Wes and Carisa, and I headed to the 4^th floor waiting room…where we are right now. Waiting.

But…they did just update us that the right lung has been attached! Now they will remove the left and attach the new left lung. What a miracle.

You know, there are two of me, or more, maybe I have Multiple Personality Disorder, but I have a very romantic, magical, believing side of myself, let’s call her Tammy….this is the self who creates fairy dust for Christmas and the sound of reindeer and sleighs….the spiritual side that has faith that there must be something…something greater than ourselves….the idealistic liberal democrat who believes if everyone could just be nice to each other, we’d all be happier. Then, there is Tam, the logical argumentative side who shakes her head and says Tammy is an idiot….the one who believes in Occam’s Razor, a scientific precept: the simplest explanation tends to the be the correct one. The one who watches the news and cannot begin to understand the cruelty of the world, the one who says, “everything that happens is just an accident of time and place, so don’t kid yourself.” A universal spirit? A white bearded guy on a throne with angels? Angels on earth? Please. Get yourself a dose of reality.

And yet….sorry to sound Age of Aquarius…but the stars or SOMETHING seemed to align to create the environment for Randy’s illness and healing. Strange, small things that made no sense at the time, but now, looking back…seem to lay out a pattern. For instance, in my college consulting business, I have a very high “close” rate…meaning that of the families who come to consult with me, I end up getting about 85% of them as clients. I also have a sibling rate of 36%. I am pretty proud of those numbers….I had several consults with families of students for the 2015 school year, and I felt really positive about all of them. Out of them, I only had a couple who were still thinking about it, and the rest went with someone else. This was a first. Granted, many of these interviews/consults occurred in June when my mother was dying and I was spending most of my time with her, but I really was stunned, and felt like I must have lost my touch. Randy and I went to Cozumel for July, and I received very few inquiries during the month…also strange. On August 2^nd, when Wes and I rushed Randy to the hospital, we certainly never expected anything like this….we thought okay, infection…antibiotics, steroids, home and better. Wes and Carisa left for Alaska. Randy did not get better. His friends began to fly in from all over the country to see him, his friends in town were in constant touch with him. My family flew in to be with me.

He was put on the transplant list….as number one. When that happened, Wes decided to return from Alaska, and shortly afterward, during his brother Russell’s visit, he experienced a severe “episode” that ended up with him on life support….because that is what ECMO and a ventilator is. We can say ECMO, but the truth is, Randy came very close to dying on August 30. ECMO saved his life, and he has been “under” ever since. I decided to finish my students for the 2014 college admissions year, but take on no other students…I suspended my practice, and only had to inform a couple of people who had not yet committed. For some reason, I just didn’t have solid students for the 2015 admission season. People have prayed for him, lit candles for him, sent energy and healing to him, visualized lungs for him, come to the hospital to pray for him, prayed during the high holidays….surely, such collective energy and prayer must have an effect somehow? Is there a force in this world that is inexplicable…does fate really exist?

Now….I know this is weird, but I carry with me, always, a Ho Tai Buddha and a Fortune Kitty. Both are Chinese good luck tokens. I have done so for years and years. Several months ago, Fortune Kitty disappeared. When Ran became ill, I brought a different Chinese cat to his room, but he continued to worsen. With offers for lungs that didn’t go through, I was becoming less hopeful. Yesterday morning, when I went to wash my face, I found Fortune Kitty sitting on the counter by my sink. I was so excited, and I thought, today is the day! The real Fortune Kitty is a sign. I took it to the hospital, and taped it on the door where it looked over him. Two hours later I was told he might have organs.

Randy and I, snorkeling with Whale Sharks

So, Tammy is in the ascendant, with a sense of wonder at how the “stars aligned”, or perhaps the music of the spheres were stirred and were heard? The universe heard our wishes, God answered our prayers? I think it may be. It really may be.

I know we have a long way to go, a hard road of recovery, but how many people get a second chance at life? I believe a miracle happened for Randy and I, our children, family and friends. A large collective has been united in a cause….and it has made a difference.

Bless every one of you. We wait with hope and anticipation that Randy will recover.

Still Rolling

September 8, 2013 By Tam Warner 4 Comments

I came in this morning, Sunday, and Randy was awake! He was quite calm, following me with his eyes, squeezing my hand, responding to commands. I just talk to him, telling him who asks after him, who has visited me in the hospital (my new home), and any news, like Rachel and Zach getting engaged!!!!

Tony flew into Dallas yesterday, and came back to the hospital today. He saw Randy and talked to him a bit. His nurses today are Jenna B and Jenna B (or Jenna squared) and they stretched his legs and arms. I’m sure that felt good. So Ran was up for about an hour or so before his breathing rate increased, and they put him back under. Ally came later in the afternoon, and he woke to see her, you could see him responding to her voice.

Lungs. We need lungs. I cannot believe that he is number one on the list and still does not have lungs. This weekend there were 3 offers for lungs….none of them acceptable. The doctor told me that it is a good sign that he has had 3 offers this weekend, meaning that the competition from Baylor is not edging him out. Meaning that his score must be the highest for the area. Last night, one of the staff accidentally told me there was an “offer”….I was on pins and needles all night…and this morning. No lungs came. I understand completely now why they wait until the last minute to inform you. My hopes were so high last night, and so devastated today. Wisely, I did not tell anyone else…and it was difficult as Randy’s dad, Rex, and brother, Rexie, came up to the hospital after I heard there had been an offer. I am so glad I kept my mouth shut….why disappoint everyone else? Rexie came in Thursday and left this morning.

But the roller coaster goes up and down, and all around. Late this afternoon, after Randy’s bath, something set him off…his heart rate was higher than usual, he was fighting the ventilator, breathing 50-60 times a minute, coughing, and coughing is a terrible thing, it is soundless, but he raises off the bed. So, Dr Kaza decided to do a bronchoscopy to be sure nothing was lodged in his throat or lungs, but there was nothing. Thank God. He is fighting the ventilator so hard….they ended up having to paralyze his muscles to get him to breathe with the vent. He fights the sedation as well. All of these things will serve him well when he finally gets a pair of lungs.

With close friends Greg and Lauri (Rachel's parents)! — With close friends Greg and Lauri (Rachel’s parents)!

Every day he goes without new lungs is a risk: the risk of infection, risk of a complication…. I really cannot conceive of a world without Ran…I know it is not his time. All of these issues during the long days in the ICU put my heart in my throat, or causes my heart to drop to the bottom of my tummy. Brad L and his lovely wife Jennifer came yesterday, all the way from Rockwall, to lift Randy up in prayer; a family I’ve gotten to know in the ICU waiting room prayed the Our Father with me; another friend has recommended the Ho’hoponopono mantra: I’m sorry, Please forgive me. thank you, I love you. She says it helps liberate kharma. I’ll try it. I will try anything and everything to keep Randy with me…so if you have any suggestions, feel free to give them to me.

I really need to sleep. I do sleep at night, wake in the morning and feel the pull to the hospital so strongly I can barely pause to get myself coffee and showered. I need to drink more water, take some KIND bars with me, maybe nibble a bit on graham crackers…. I stopped at Eatzi’s Market tonight and had some shrimp for dinner. Tomorrow I plan to take a Greek salad with me….I know I need to stay well. I am taking vitamins.

I am still hopeful….all he needs is a pretty, healthy, pink pair of lungs. The sooner the better.

The Roller Coaster

September 6, 2013 By Tam Warner 6 Comments

September 6, 2013

I have never liked roller coasters. Even as a kid, I stayed away from them, preferring the log ride or the ferris wheel. I do like excitement and adventure: seeing Great White Sharks, lions in trees, giraffes, penguins walking by me….but for me, that is not in the same league as the sickening roller coaster. I hate the severe ups and downs, side by sides, the gravity pull, the feeling of being totally out of control. I am on a roller coaster now.

This morning, Randy woke, he followed commands, they got him sitting up on the side of the bed. He knew me, and squeezed my hand, and looked into my eyes. My excitement was over the top. Rex was here this morning, and Randy’s brother Rexie has flown in from Chicago. I hoped they would take the ventilator out, but now I find out if they do so, it will be a few days. I just spoke with Dr. Kaza (and Randy has tremendous respect for her) with Ally and Wes so we could know the thinking of the transplant team. They want to play it safe, and keep Randy a transplant candidate as long as possible. ECMO has the potential to do that. Even with the ventilator in, he can begin to sit up, do a little exercise in bed, and that would be much safer, Dr Kaza says, than risking taking the ventilator out. The ECMO is doing all of the work of his lungs….they are estimating he has 5% or less of his lungs left which is not survivable. He is in better condition than many, many lung transplant patients, but when they put him on “air on demand” (kind of the way a scuba tank works) he breathes far too fast. It is better to let the ventilator breathe for him, she says, than to have him feel breathless and panicky. Okay, we understand that.

Of course, this is a huge let down….but that is the way every day has been since August 2. We hope and try to keep our spirits high…but there is always the down side. The only thing that is really going to help is lungs. O lungs. The most common blood type. Lungs. A pair of healthy lungs. That is our only hope, and every day that passes increases his odds for complications… Dr Kaza said that since he is a healthy guy (other than failed lungs) the goal is to keep him on the list. His score has dropped a little because he is on ECMO and the ventilator, but he is still high on the list. He has been here so long that the team knows him quite well, and they are searching for the right pair.

My friend Kim tells me Randy is now on the prayer list of the Dallas Cowboys…so many people have reached out or sent their best. It is so appreciated. It lifts our hearts. Click to Tweet.

We are still waiting on a miracle. Waiting for lungs, riding the roller coaster.

Cannula replacement, Exhaustion, and Hope

September 5, 2013 By Tam Warner 1 Comment

Yesterday was another day of high drama. Ally came up yesterday morning to work and be with me, and Dr Dimaio, the head surgeon for the transplant program at UT, came in to talk to us. He wanted to replace the cannula that is embedded in Randy’s vein, which takes the blood from his body and runs it through the ECMO machine, oxygenating his blood. Fortunately the surgery went well, and this morning Dr Kaza explained that they have set the ventilator lower, it is only at 10%, the goal is to remove the ventilator tomorrow and start doing some physical therapy with him prior to a lung transplant. No lungs suitable for Randy have appeared in the last 3 weeks. They also needed to make sure there was no brain damage….so they started slowly waking him to get him to respond to commands…and he did! He squeezed our hands, and wiggled his toes. He wasn’t responding at first, then I started talking loudly about the Great White Shark photo of me in National Geographic, and he started waking, enough to respond. I knew that would get him going. Ha! Randy LOVES those photos, and wants the film that Jero made of the event, maybe Rodrigo and Jero will give it as a get well gift?!

Obviously, I am feeling much better today. Yes, of course, I am still afraid, but I am less afraid. One of the nurses just told me she is confident he is going to make through this. The roller coaster of emotion I’m riding on is hopefully slowing….I just want him to get lungs so we can start rehabilitation….I know he will be devoted and conscientious of his recovery. I am going to start posting our Tanzania adventure from last summer….please enjoy that!

And as for all of you? Our friends and supporters:

“The making of friends who are real friends, is the best token we have of a man’s success in life.” –EE Hale

Randy is a true success, with so many who love him….as I always say, “everybody loves Randy!”

and to those we do not know but who have taken Randy into their hearts:

Hebrews 13:2

“Do not neglect to show hospitality to strangers, for thereby some have entertained angels unawares.”

You are all angels.

Transplant. An Unexpected Journey

Hebrews 13:2

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