An unexpected lung transplant

A Message from Randy

October 17, 2013 By Tam Warner 3 Comments

Today has been an unbelievably emotional day for me. First, I went to the physical therapy room with Randy and saw him sitting up in a wheelchair, and then I saw him get up and walk with a walker. Seeing him walk almost put me on the floor. I haven’t seen Randy stand on his own two feet since August 3. My muscular man is so skinny! But he is moving, and working hard to be able to come home.

Randy wanted me to thank everyone, and to forward this message to everyone who has sent even one wish his way:

Hello.

How fortunate can one person be? Save any serious complications, I am on the mend.

I have new donor lungs, with a completely normal oxygen saturation rate of 98%, and I am doing physical therapy to get back in shape. Certainly I am very lucky and extremely grateful to the donor and family that made this all possible. The same donor also helped others by donating their heart and kidneys. We should all be so generous.

Only in the last few days have I learned about the dire days leading up to my surgery. There is no recall of my last crash, nor the ECMO and surgical procedures that followed. That’s good for me….but, my family did not have such a benefit. Their vigilance and support has meant so much…..I only wish I did not put them through so much concern and fear. Tam, Ally, Wes, and my Dad have been there for me every moment.

Additionally, I have had such an out pouring of support from all of you. Some are friends of Tam’s, others are close or old friends or family members. Life long friends, where we all always promised to be there for each other if needed, never wavered. All your thoughts and prayers are so very much appreciated……not quite sure I am deserving of them, but your support has meant so much to our family and myself, and helped greatly in meeting this challenge.

Thank you!

FYI. I didn’t know anything about ECMO, but Tam sent me this link:

http://www.cnn.com/2013/10/11/health/miracle-marathoner-carlos/index.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+rss%2Fcnn_health+%28RSS%3A+Health%29

Want an accompaning sound track…..try Still Alive andWell….Johnny Winter

FROM TAM: I do not know where to even start to thank everyone….I’m sure I will figure out what to say at some point, but as I said, today has just been too emotional for me to say much of anything at all. Thank you, thank you, thank you. We are blessed by your love, your support, your thoughts, your prayers, and your presence in our lives.

Dons in Dallas

October 13, 2013 By Tam Warner Leave a Comment

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

Randy has been at Zale Lipshy, in rehab, for one week tomorrow. The last time the Dons were in town (the “dons” are a group of elementary, high school, college friends who have known each other from childhood) Randy was on the transplant list, and we were all very optimistic, thinking that lungs would be coming any moment since he was first on the list. If you’ve been following the blog, you know that things went a little sideways, with Randy going into respiratory failure suddenly and being put on ECMO, the last resort to keep him alive, to serve as a “bridge” to transplant. These guys have been incredible, they have called me, texted me, and emailed me to send me love and encouragement through this long journey. I have been blessed by having so many people who love and care about Randy, they have helped keep my spirits up as well.

So earlier this week, I received a call from Brian (the Memphis Don) telling me he thought he would come down and see how Randy’s doing. The next thing I know, Brian, Murph (Atlanta Don), Pete Scott (aka Karl from Napa), Big Dave (who I find out is moving back to Dallas), and T-man and his girlfriend are coming in to check up on things. Only Mike Hurst (San Diego Don) could not get here. Lucky T-man, he and Amy have tickets to the Eagles Concert on Saturday night (friends were in the 4th row on Friday night, can you imagine??). I so much wanted to see the Eagles…but hey, maybe next year. The guys came in late Friday and early Saturday, and spent the day with Randy at Lipshy. I can only imagine what the nurses and therapists made of that.

What a weekend to pick! Between Texas – OU weekend (some college football game between the Longhorns and Sooners at the Cotton Bowl in Dallas), the State Fair, and the Eagles concert…not to mention construction on LBJ Freeway (one of the arteries of Dallas), the guys could barely find a hotel. Of course they could have stayed here, but they decided that four guys who stay out and party and drink were too many for me to put up with. They have a point…but they are always welcome. So, Ally and I make dinner arrangements at Nick and Sam’s Grill (Nick and Sam’s is my favorite restaurant in Dallas, and the new Grill in Addison is incredible) for 8p.m. The dons rolled in about 45 minutes to an hour late. No problem, except Ally and I finished off the Mediterranean flatbread before they arrived.

Fabulous dinner at Nick and Sam's Grill! — Fabulous dinner at Nick and Sam’s Grill!

We had a great dinner, toasting Randy, toasting the donor and the donor’s family, everyone overjoyed with Randy’s progress. We pretty much closed the place down….and of course, the Dons continued the party elsewhere. When they arrived at the hospital this morning with their coffee…they were not feeling too well. They were groaning. Randy’s dad enjoyed meeting up with the boys, and I left them around 1p today, feeling extremely tired myself. With all the work going on at the house, some of it I am saving as a surprise for Randy, working with students, trying to handle taxes and family business and finishing up mom’s estate with my brother, I do get a bit tired. But this was a terrific weekend, and it cheered, and humbled, Randy that these guys would fly in from all over for just one day. Amazing!

Oh, and BIG NEWS! Randy stood and with help, made it to 6 steps!!! More on that to come, what an incredible moment for him…he hasn’t been on his feet since early August. It’s all going well so far, and we are hoping that maybe in 2 weeks we will have him home! I’d better get back to work!

Comings and Goings

October 11, 2013 By Tam Warner 5 Comments

Through most of this crazy journey, my 2013 college graduate son, and his girlfriend, their cat and their dog, have been living here. All of this occurred during their move from Redlands, CA to Austin. Their plan was to drop their stuff, which they did, go to Alaska, which they did, and come home and move to Austin, which they were unable to do. They actually came back early from their Alaskan adventure because Randy went on the transplant list, and stayed until this past Wednesday morning. This has been one very tough time, for so many reasons.

Husband and father was very, very sick, and he went downhill so fast that no one really had time to comprehend or absorb what was going on. We are a close family, and this hit my children very, very hard. It was incomprehensible to them that they could actually lose their dad. My son always said that he never wanted what happened to me (losing my dad when I was 25 years old to emphysema) to happen to him, he was terrified of having to go through that. I was at the point where I didn’t believe the sarcoidosis diagnosis, and I was afraid it was Idiopathic Pulmonary Fibrosis (Lung scarring for no apparent reason), a diagnosis with a very poor prognosis, aka, “the average person lives 1-3 years after diagnosis”. Of course there are people who live longer, and those who live shorter. Randy was diagnosed, incorrectly, 3 years ago with Sarcoid.

Veno-arterial_(VA)_ECMO_for_cardiac_or_respiratory_failure — What ECMO does

If not for ECMO (extracorporeal membrane oxygenation (ECMO) a technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function), Randy would not be here today. ECMO was the last resort, and kept him alive until transplant!

So my daughter was living at home with her 2 cats and dog, Wes and Carisa stayed with their dog and cat, joining our two dogs. Chaos! Zoo! It was quite stressful for all of us. When it became clear that Randy was out of danger, I told Wes and Carisa to go to Austin and start their lives. They can visit often, 3 hours is not that far away, and they are anxious to begin their adult lives, and they should live their lives. We are so fortunate that they have all moved out knowing that Randy is okay, in rehab, and will come home in the next 3-4 weeks. Yes, we are blessed, lucky, fortunate, whatever you want to call it. Randy is a miracle. It seems the Lung Transplant Team at UT are true miracle workers.

So, now, I have work people in and out, almost every day, trying to get the house cleaned (and I mean CLEANED), all of our “stuff” culled, the garage painted and cleaned, etc etc. This house will not be a bubble….but it will be as close as I can get to it. The first year is so important…and the fewer exposures to dust, spores, fungus, bacteria, viruses the better. He’s going to get well whether he likes it or not!

And, to help him on his way, guess who is arriving tomorrow? You got it: the DONS! Brian, Little Murph, Tony, Big Dave and Pete are on their way to see their fellow Don in rehab at Zale Lipshy. They are so excited he had the transplant and is doing so well. I’m sure it will be an interesting weekend, and you know I will blog about it soon!

A Bright new day: Move to Zale Lipshy!

October 7, 2013 By Tam Warner 4 Comments

Zale Lipshy University Hospital is one of the world’s premier neurological diagnostic and treatment centers. Randy was moved there today! One step closer to home. We are so excited that he has come so far! He was being tremendously hard on himself, but he now has more understanding of how terribly ill he was, and how far he has advanced. I haven’t been to Zale yet, but plan to go tomorrow. I don’t know what his schedule will be like yet, but I imagine he will be very busy. I am in the process of scheduling the remainder of the transplant classes, pharmacy classes and nutrition classes that we both need to attend.

The house is really coming together: I have gone through every cabinet, every drawer in the kitchen, laundry room, garage, living room and master bedroom….I am culling ruthlessly, and everything looks almost empty. The new gas logs went into the fireplaces today, so we have beautiful fires (which Randy and I both love) with no smoke. Clean burning so no worries for Randy, but they are a surprise for him so shhhh! I have purchased battery operated candles as well (they look pretty realistic and have timers). New floors, garage cleaned out, new drywall, fresh paint, and will be scrubbed spotless. New blinds installed on Thursday, everything designed to lessen the amount of dust in the house. Wes and Carisa leave for Austin (their intended home) on Wednesday morning, so the house will down to me, Luke, Lucy, and during the day, Remy, Ally’s dog. And of course, all the people working on the house!

376832_4402132535504_511398844_n — Randy and I with Lyn and Mark

I have been exhausted. My friend Lyn and I went to our joint birthday dinner Friday night, to RISE no. 1, a fabulous souffle restaurant off of Lover’s Lane, and I could barely stay awake long enough to get home (my artichoke, Nicoise Salad and Pumpkin souffle were amazing). The next morning I had to go to the bank with my brother to do some business for my mom’s estate, and I was almost afraid to drive home, the exhaustion was so pervasive. I haven’t made myself slow down….I did have a massage, but I have been so focused on getting the house ready for Randy to come home I haven’t taken enough time for myself or for my emotions. I’ve had a few cry sessions, but I could use a couple more.

So, Sunday I rested, and at 430p-630p I did a yoga class at The Mat, in Dallas, a special class to deepen one’s practice. It also includes basic yoga philosophy. The teachers, Samantha Martin and Becky Strahan, are incredible people. Gentle, thoughtful, and as we say in “yogi”, mindful. I have done yoga since the 90s, when my back started to become worse and worse, and I was more and more limited as to my usual activities. It has been my Physical Therapy and in no small part, my emotional therapy as well. I have long studied yogi philosophy and sought to apply it to my life, and I have studied in some depth the first four of the eight limbs of yoga. Samantha and Becky went over 3 of the Yamas last night: ahimsa (non-violence, or do no harm), Astaya (non stealing), and Satya (truth). After all these years they pointed something out right away that I had never even considered: doing myself no harm, not stealing from myself. Seems obvious now, but I have never thought of applying these things to me. Novel concept, not to hurt myself! In terms of yoga practice, it would mean not to overextend, not to do too much, to treat myself gently…but it also means that in life as well. I have to take better care of myself, and now that I consider it in a personal light, it makes complete sense. So, my new goal for just myself, is to do myself no harm…get enough sleep, eat right, and learn to say no. And yoga, of course, plenty of yoga!

Birthday Surprise and Physical Therapy

October 2, 2013 By Tam Warner 1 Comment

I had a wonderful birthday on Tuesday, with flowers and a surprise dinner arranged by my children (26 and 23). We went to Nick and Sam’s Grill in Dallas on Belt Line (or Addison?). The only one missing from the table was Randy…but knowing he was safe and sound at UT Southwestern University Hospital gave us all joy. Of all the birthday gifts I have ever received, Randy getting lungs has been the best! It is still just unbelievable to me. (By the way, Nick and Sam’s Grill has hot pretzels! I LOVE hot pretzels!)

I went to visit Randy tonight and took him an earring and his wedding band (both had to come off when he went onto ECMO), and many cards and photos of the flowers I received. I told him about all of the food and snacks as well. I’ve read him emails and texts, the love and support from everyone has been phenomenal. Looking through the cards, he expressed appreciation, but said he was disappointed there were no checks in them! Kidding, kidding.

He is quite hard on himself regarding his physical therapy. He just cannot understand why he isn’t getting stronger, faster. He cannot stand or walk on his own yet. I try to give him some perspective. He has been in critical condition, in ICU since August 3. His lungs continued to worsen, until he had a respiratory crisis and they had to put him on life support, an ECMO and a ventilator. He was on his back, not moving, for 12 days. Then he had a lung transplant! A double lung transplant. There were a few complications afterward, mostly his rapid heart rate (fixed by ablation late last week when he had to go back to ICU from the floor) which kept him from doing any physical activity. He has lost over 35 pounds, his muscles have atrophied. I told him he is being far, far too hard on himself. It is so difficult for him to lie in bed, not able to walk or stand on his own. Randy has never given anything but his best to his work…and physical therapy is work. He is terribly upset by what he sees as “lack of” or “not enough” progress. However, he is alive. That, in itself, is incredible, and he does improve every day. Trying to imagine himself on life support for so long is inconceivable to him. We went over the timeline again today, so he can truly understand why he is so weak. It is going to take time. Lots of time. And he now has time. A miracle.

Tomorrow we are meeting with the Transplant team nutritionist to discuss foods he will be able to eat, and not able to eat. I am learning something new every day!

Trying, I’m trying!

September 30, 2013 By Tam Warner 2 Comments

How to get everything done? I swear, the list is endless. Randy is no longer in ICU, and he was supposed to be moved to Zale Lipshy Rehab Center at UT Southwestern today, but now they say it will be a few more days. I have lists and lists of things to do….I have been working like crazy…and sometimes I feel like a hamster running in a wheel…not going anywhere. Why does my list seem to get longer instead of shorter?

Maybe things are finally really catching up to all of us….I always say, you have to be strong when there is no choice but to be strong, but after the event(s) is over, things change. Now it is time to process, to comprehend, to understand what has happened and how it will change our lives. I don’t think Randy has a real awareness yet of the changes he will have to make in his lifestyle, and these changes will be permanent. Lung transplant patients are different than all other transplant patients because the lungs are the only organs (except skin, I guess) that are exposed directly to the air around them. He will need to wear a mask when he goes out, at least for the first year. He won’t be able to drive for a while, he’ll have clinic once a week for 3 months and 2 physical therapy appointments a week. We have to sit down with a pharmacist to study and understand all of the medications and how and when they are to be taken properly. The meds are very important. Only 50 percent or so of lung transplant patients make it to the 5 year mark, and one of the main reasons is medication. One reason is not taking your medication properly, the other is side effects from the medication. We will have to be very alert to any symptoms of any kind for the rest of his life.

So, I am feeling a little overwhelmed, a little anxious because I want to make sure everything that needs to get done before Randy comes home gets done. I took a break on Friday night and Saturday, and made the mistake of going to a casino instead of getting massages or sleeping. There are way too many people in a casino…I have no idea what I was exposed to, so I am avoiding Ran for a few days. We have been warned so many times about not being around him if we don’t feel well, that we are probably too paranoid. Better safe than sorry, right? So. aside from the long, long list of things I need to get done in the house, I need to figure out how to take care of myself, and how to take care of Randy once he is home. I need to get myself on a schedule, but I cannot seem to get caught up.

Tonight, yoga. I promise.

Transplant. An Unexpected Journey

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