LIFE Archives | TRAVELS WITH TAM

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.

The Wheel of Fortune

September 26, 2013 By Tam Warner 5 Comments

September 26

What a day, as some of my dearest friends would say, “Oy vey”. This morning I was awakened by a phone call from Randy, letting me know they were moving him back to the ICU. The last couple of days he has had some heart racing and arrhythmia. They have given him medication, but this morning the arrhythmia was bananas: 80, 190, 130, 190, etc etc…..He was obviously not feeling well, and was having some chest pain with it. It was so difficult to watch….from 80s it would go to 190 and back and up and down. Watching those numbers on the monitor was nerve wracking. He wasn’t in pain exactly, but he would feel pressure in his jaw when it was high, and he was really flushed. The docs seemed very concerned, but it took forever to get him to the procedure. So now they have him in the heart catheter lab, doing an Ablation. “Ablation is used to treat abnormal heart rhythms, or arrhythmias. The type of arrhythmia and the presence of other heart disease will determine whether ablation can be performed surgically or non-surgically. Non-surgical ablation, used for many types of arrhythmias, is performed in a special lab called the electrophysiology (EP) laboratory. During this non-surgical procedure a catheter is inserted into a specific area of the heart. A special machine directs energy through the catheter to small areas of the heart muscle that causes the abnormal heart rhythm. This energy “disconnects” the source of the abnormal rhythm from the rest of the heart. It can also be used to disconnect the electrical pathway between the upper chambers (atria) and the lower chambers (ventricles) of the heart.” Thank you, WebMD. The cardio doc says that Randy probably has had the condition for years….he said it usually goes undetected except in circumstances like these, the stress of the lung transplant made the condition noticeable, and uncomfortable. It is called a tachycardia.

It turns out that Randy doesn’t have just one, but several, in both the right and left ventricles. The doc ablated the largest one in the right, and the one he could reach on the left. After the procedure, and Randy woke up a bit, he said he felt “normal” for the first time since the transplant. His heart rate was normal, his blood pressure (which they couldn’t even find for a while this morning) was perfect, his oxygenation great. What a relief. They will keep him on some meds now that his rhythm has recovered, and he can begin to get on with the business of getting better. After such an incredibly difficult surgery, being basically on life support for 11 days, and having these bumps since the surgery has been worrisome and stressful…. Just when I thought we would get some normalcy back (hey, that is a very relative term), Randy working on recovery, me continuing to work on the house and with my students, the kids helping with the house, garage, and other issues…we run into bumps. But that is okay. He is alive, and two and a half weeks ago I had moments of doubt that he would come back to us.

I heard a song on the way home in the car, “Wheel in the sky keeps on turning, I don’t know where I’ll be tomorrow”. It reminds of a tarot card…the Wheel of Fortune. The roller coaster metaphor relates to the Wheel of Fortune….sometimes your fortunes fall, but they always go back up. The really bad times make the good times much more precious. The journey ahead is long, but I have to believe we are headed up the wheel and joy lies ahead. I’m hoping for no more stressful “bumps”, but we will deal with whatever comes our way. I’m just hopeful that we are on the way up. He is so exhausted, so I am hoping he has a good night of sleep and wakes feeling rested.

Mantas, Whale Sharks, and the Marine Megafauna Foundation

September 25, 2013 By Tam Warner 2 Comments

FIRST PUBLISHED SEPTEMBER 25, 2013, 15 DAYS AFTER MY HUSBAND HAD A DOUBLE LUNG TRANSPLANT.

I volunteered in Tofo, Mozambique in May 2012 and met many of the scientists of the Marine Megafauna Foundation. I admire these people so much for their dedication to saving important animals in our oceans, animals threatened by ignorant beliefs, shortsightedness, and unsubstantiated medical claims. I signed up to go to Komodo in January, on a 2 week research trip, looking for mantas and encouraging young women, through Ocean Gems, to go into marine science. I also thought about going with them to Ecuador, but decided to wait. In Ecuador right now, they are seeing some of the largest Manta Rays ever discovered, and they also saw a huge, pregnant whale shark. I just watched the video on this trip, you can find it at Project Mantas Ecuador. Amazing.

I must confess to a few tears….do not get me wrong: Randy’s health comes first, absolutely. I canceled trips because I had to, and because we have to get Randy back to health before we do anything else. But still….there is a little part of me feeling sad because I am missing out on trips that I had planned and dreamed about doing. I realize it doesn’t mean I won’t be able to do them, it just means I cannot do it NOW. I have always had an awareness of the fragility of life…and I have wanted to travel and take part in the bigger world as a consequence of it. I know I must do what I want to do while I can still do it. This is just a setback, I will be back under the water.

Randy may or may not dive again, it is certainly not advisable for at least a couple of years, so he can see how well he does with all of the medication. For all I know, maybe he will be diving again in a year, 5 years, or never again. It doesn’t really matter as long as he is healthy and strong. I am perfectly capable of going off on my own.

And yet, I feel the loss of my dive buddy, my dive partner. Of course, there are other possibilities now, like mountains, hiking, and more adventures in the USA. Maybe Alaska! I will enjoy any of these activities. I will enjoy sitting in our backyard, playing with our dogs. My passion and focus remains under the seas….but as I said, I will get back to my ocean and its creatures. If Randy is doing great in six months, perhaps I will take a live aboard trip. We’ll see.

The journey of the lung transplant doesn’t only have a major effect on Randy, but on his family and loved ones as well. I think it is important to be honest about our feelings as we continue down this path. We all have fears and hopes, and while Randy is at the center of them, we each have our own lives to live. We just have to go with the flow, there is no way to force the river into any particular path.

One of my favorite authors, John Steinbeck, gives what is sage advice: “A journey is like marriage. The certain way to be wrong is to think you control it.”

Oh, yes. He did it again.

September 23, 2013 By Tam Warner Leave a Comment

I wouldn’t exactly call it a Swan Dive this time….the nurse, Jarrett, called it a “Slide”. Yes, made it out of bed to slide down the side of the bed on your ass. Randy felt that he had learned from the Swan Dive, that he needed to untangle himself from sheets and blankets and tube lines. Well, you have to admit it worked better…but he needs to stop falling! One of his nurses from ECMO, Jenna, told him she’d let him have pizza if he would STAY IN BED. The Pizza arrived…and he has stayed in bed. Whew.

The medicines a lung tranplantee has to take for the rest of his life is a little overwhelming. And they have potential side effects. Right at the moment, it appears that a rapid heartbeat is a side effect of something….they are trying to get it down below 100, and if they can do that, they will actually move him to the floor! Meaning out of ICU. Of course, that means less supervision, so he needs to be careful….but he is going to need to learn to work with his PT team, not independent from them.

On another note, I returned to yoga today. I felt absolutely wonderful and peaceful afterwards….

until another of the women in the class and I backed our cars into each other. No, I’m stressed about it, I mean, accidents happen, right? This is pretty small potatoes compared to lung transplants, ECMO, and life support. I think the other woman is taking it a bit harder than I am….but hey, I have a totally different perspective. Don’t sweat the small stuff!

September 23

Randy did PT this morning, and I think he is feeling anxiety because he still cannot walk. That will be quickly remedied, though, as he begins working in earnest to recover. They are planning to move him to the 6th Floor Lung Transplant floor, which is good news. I believe he will feel better about being in a “regular” room, and I know visitors will be more comfortable.

UPDATE: Randy has been moved to the regular floor!!!! Cards are great…no flowers for lung transplantees! He’s in room 613.

Randy’s Swan Dive

September 21, 2013 By Tam Warner Leave a Comment

On Friday I spent several hours with Randy. He is doing absolutely great, but he is very frustrated with his lack of progress. He cannot understand why he is so weak, I think it is very difficult for him to understand the length of time he has been in bed. I’ve never seen his arms and legs so thin.

Randy has worked out daily for most of our marriage, lifting weights or walking or even running when he was younger. I’ve never seen him without heavily muscled arms and legs….until now. He will get it all back, I have absolutely no doubt of that, but right now, he is going to have to work very hard to get strong again.

Random thought: Have you ever tried to watch a movie in the ICU? Impossible. I told him we could try again when he gets to the rehab center.

I received a call from his nurse, Melissa, this morning, and she told me of his grand adventure during the early morning hours. He got it into his head that he just needed to show the nurses and doctors that he could walk on his own, then they wouldn’t have all of these rules. There are not usually patients walking around in ICU, but for some reason, he thought he could do it. I may be wrong, but I think he had a sleeping pill so he would get a good night of sleep. So, he decided to get out of bed and walk. Well, he fell out of the bed, which apparently brought his nurse pretty quickly because there is an alarm on his bed, in case he would fall out. I can only imagine his chagrin, lying on the floor next to his hospital bed, with his IVs, new lungs, and his bruised ego.

Actually, he told the nurse he didn’t really fall, he was just practicing his Swan Dive. He apparently apologized profusely, and has joked around with everyone all day about his Swan Dive. He also admitted to Courtney, his night nurse, that it had been a pretty stupid move.

A call came around 7p, shift change, and Melissa told me that after a day of being uncomfortable, he finally told her that his back hurt, and he was afraid he may have injured it. Off to xray! Courtney (on nights) called to let me know that there was no new injury to his back…it showed degenerative disc issues. Whew. Hopefully he just pulled a muscle and will be feeling better tomorrow.

Tomorrow, I have decided to return to my yoga practice. Why is it that people forget taking care of self when a loved one is in trouble? At least I do. There were many times I could have gone while mom was sick, or since Randy has been ill, but I’ve had either a compulsion to be at the hospital with him, or a compulsion for the Lung Transplant team to see me every hour so they would not forget that Randy needed lungs. I’m also readying the house, trying to get bills paid, and of course, work with my high school seniors on their college essays and applications. I’m trying to excuse myself, but there really is no excuse. So tomorrow morning, yoga!

Let’s just hope Randy doesn’t try to do the Swan Dive tonight!

LIFE

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