An unexpected lung transplant

Keeping Perspective

November 10, 2013 By Tam Warner 4 Comments

I had a rough day on Friday. Emotionally, I mean. My mother’s ashes and urn are here, and in taking a look at it, everything just hit me. WHAM! In the last 6 months I have lost my mother, and gone through my husband’s sudden illness and double lung transplant. He was on life support for almost two weeks before lungs were available. It has been a very intense few months, to say the least, with little relief. Watching my children suffer was harder than my own feelings. So…looking at mom’s urn made me feel guilty that we had to cancel her memorial service because of Randy’s illness, and that made me think about how close it came to arranging a service for my husband. It was so close. And so I just came unglued. Crying so hard I could barely breathe, and thinking ridiculous things like “I wish I could go home and be a child again”. I think we all need to release pent up emotions like that once in a while, clearing our heads and our hearts of detritus and debris. Mine lasted 10 minutes or so, but it physically wore me out for the rest of the day. I was just exhausted, and limp, and wanted to sleep. A very tough day.

But, grief is relative, isn’t it? I mean, these events were extremely difficult for me, but everyone goes through losing those they love or watching loved ones suffer. It is just a part of life, so I’m no different than anyone else. There are many lenses to look through when life isn’t exactly the way you want it. When I turned on CNN and saw that there were possibly 10,000 dead in the Philippines because of a terrible storm, I reminded myself to keep my perspective. Those people had lives, families, loved ones, and joys and sorrows, just like I do. It is terrible, looking at the photos, and trying to imagine the grief of those who survived. They lost friends, moms, dads, children, siblings…they lost their homes and their livelihoods and their community. I am so fortunate, so lucky, and I am so grateful for the incredible life I have. Yes, things have been a little tough, but many, many people have it so much worse. So I tell myself it’s okay to cry, but it is not okay to cry for long. Shake it off, buck up, and get on with it. Perspective and balance are important.

Want to help those in the Phillippines? Here’s a great link: http://news.yahoo.com/how-to-help-donate-to-victims-of-super-typhoon-haiyan-195111618.html

Putting on Big Boy Pants

November 6, 2013 By Tam Warner 5 Comments

http://www.youtube.com/watch?v=BKVYcPJbyAM Will Farrell (combination of Tam and Wes) and Mark Wahlberg (Randy) in “The Other Guys”.

Watch the clip. Yep. Watch it again. It is one week today since Randy came home from the hospital, after 3 months in ICU, on life support, getting a lung transplant, and rehabbing at Zale Lipshy. I blogged about how excited we all were to see him at home…I’ve also blogged about the difficulty he is having with food (no added salt, no added sugar, etc). What I haven’t done is really “out” him about what a pain in the ass he has been about food, about his meds, his schedule, etc. Watch the video again, and now, imagine Mark Wahlberg (Randy) is throwing Velveeta Cheese into the trash can. That actually happened…in our kitchen, not the movie.

Randy with Greg, Tam, Mark, Wes and Cooper. — Randy with Greg, Tam, Mark, Wes and Cooper (who looks like he is going to stab someone.)

Now, let me say this: Randy had a VERY different experience from the rest of us. WE watched him for 12 days, unmoving, unconscious, on life support (ECMO and a ventilator). Ally and Wes were absolutely certain he would die and they would never see him again. I just kept hoping for lungs and making sure every member of the Transplant team knew he was a worthy candidate for lungs. For us, his homecoming is like Christmas! On the other end of the spectrum is Randy, who wakes up, cannot move, cannot speak, is tied down to the bed with tubes everywhere, and has had some pretty wild “dreams” or “near death experiences” or “hallucinations”, take your pick. I think we can all somewhat imagine the shock he would be in. Plus, Randy is just not a good patient, and he does not want to be told what to do, and no matter how many times he hears about the importance of food and nutrition and following the guidelines, he wants to eat what he wants to eat and drink what he wants to drink. As one of our “second sons” (Cooper) said after visiting him: “Randy is crazy…he is negotiating with everyone. Dr wants to give him this, well okay, but Randy wants something else first. Oh and the waitresses up there, I mean nurses…” (meaning of course, that Randy is treating the nurses like they are waitresses). “…the nurses say he is super nice, but I think nursing makes you super jaded so Randy’s dickishness seems a lot easier to them than it does to us”. Ha! Well said, Cooper. After what WE went through, we think he should be singing the Hallelujah Chorus just to be alive, but as I said, Randy’s perspective is somewhat different. And yet he knows how fortunate he is, and it tears him up to think about what we went through.

So, Wesley drove up from Austin last Wednesday because I could not physically handle Randy’s needs (his muscles after 3 months have atrophied and he cannot walk without a walker and often uses a wheelchair). I just want to say that my son has been a PRINCE this week. We have been a bit upset about Randy’s attitude toward his recovery, but when I took Randy to “clinic” on Monday we had a good discussion about how he has been acting, and how it has upset and angered and even hurt the kids and me, and he said, “you know, I think it is time to put on my big boy pants.”

Yes. It is time. (But, of course, we got into it this afternoon because he wanted a coke.) It will just take time, and he does get better every single day. He just needs to be happy and optimistic every day…it is easier than being pissed off and frustrated. At least I think it is, and I know it is easier on everyone around him when he is cheerful!

So. Week one down, and the start of week two begins! Bring it on.

Home at Last!

November 2, 2013 By Tam Warner 2 Comments

On October 30th Randy was finally discharged and came home! After 3 months, 3 very long, often traumatic, and dramatic months, it is incredible to see him back in his own home. However, there were a few bumps on the way, mainly to do with me. I thought that he would come home only when he could walk. My interpretation of “walking” is very different from Zale Lipshy’s idea of “walking”. Randy can use a walker and go about 20 feet, but the issue is getting up and down. He has a belt around his waist to assist with “standing up”, and there is getting in and out of the car…and into bed, and lifting the wheelchair, and by 4p on October 30th I had to call Wesley, our son who now lives in Austin, to come to Dallas and help. My back has been in bad shape for several reasons, but adding the assistance Randy needs will push my spine over the edge. We do not want that…it will do no one any good for me to end up down on my back. So Wes has been here, and I cannot begin to tell you how much it means to us to have him here, caring for his daddy. He has been a trooper, cool, calm, and collected. And compassionate, my boy has always been a sweetheart, and he still is.

Randy arrived home on Wednesday, and the next morning we got up early and went to St Paul’s University Hospital at UT for a chest xray, bloodwork, and “clinic”. Clinic orders the tests they want to see, and involves checking in with the doctor and his lung transplant coordinator. We were there for quite a while, but it was his first visit. Dr. Kaza, who has been with us since day one at UT Southwestern, was in Clinic on Thursday. It was so wonderful to see her…she was the one I always looked at to see how things were going. She said to me, “It is good to see you here. We had a few tough conversations, didn’t we?”. Oh, yes, we did. Dr. Vaidehi Kaza has to be one of the kindest, most compassionate doctors I have ever known. She truly glows with an inner light, and has a very healing presence. I will never be able to express my gratitude to her, and to the entire Transplant Team at UT.

Breathing treatments at home were ordered, a liver sonogram, and a CT scan has been ordered for Monday. Having a Lung Transplant, and being so ill for so long, becomes a full time job. His dose of steroid is being lowered which should help with his facial swelling and appetite. For Randy it has been frustrating in many ways, but the one issue he has the most trouble with is food. Randy’s motto was always, “can’t be too rich, can’t be too skinny, can’t have too much sour cream, you can never have enough cheese”. I’m trying to take it a little easy on him by doing bread with only 3g of fiber instead of 5g, but even that drives him crazy. He wants soft white bread. And Mr. Everything-needs-more-Salt is having a problem with not salting everything. He wants cheese. Fine, but you can’t have too much, so you can’t have 4 slices of cheese on a grilled cheese sandwich. That pissed him off. We ended up compromising with tuna salad and tomato soup. Tonight I have slow cooked a Cajun pork stew. He’s eating right now…I’m sure there is something he will find wrong with it. My theory is that since he is so hungry, he will acclimate quickly, and hopefully we won’t have this as a running battle.

I am tired. Even with Wes here, I am tired. All day we have blood pressure checks, temp checks, insulin shots, sugar sticks, pills….he is on a boatload of pills. Anti rejection, anti viral, blood pressure, antibiotic, breathing treatments, and everything must be meticulously logged. The log book goes into Clinic weekly. Randy has Clinic and Pulmonary Therapy most of the day Monday. Wes is going to take him and give me a breather. I am hoping to get into a routine soon, and Randy is getting stronger every day. When he can get up and down without help, Wes will be able to head back to his job hunting in Austin, and I’m sure Carisa will be happy to have him back. I will try to go to yoga tomorrow….I really need it.

The kids were nervous about pain I am having, it’s muscle spasms from sitting in hospital rooms and moving things around, and not getting massages or yoga like I need to. Anyway, I went to the doctor this morning to make them relax, and yes, it is STRESS. I’m the luckiest mom in the world to have Ally and Wes, they are deeply caring and compassionate (among other traits which I will not elaborate on here). I also realize how incredible it is that Randy is watching television in front of the fire at our home right now. We have been truly blessed.

PS: Randy liked the stew! He liked it! Mikey!

The Journey Home?

October 28, 2013 By Tam Warner 8 Comments

Randy’s release date (sounds like he is in prison!) is supposed to be Wednesday, October 30. BUT. I haven’t heard anything from the Lung Transplant Team about whether he needs equipment at home, nursing care, home health, etc etc. I mean, kind of important stuff! Since he is not walking unassisted, I confess to being nervous. ***Oh, after several phone calls I have an update: he is coming home Wednesday and they will tell us what we need to do tomorrow. AND Randy talked with the head of the Lung Transplant Team, and apparently he told Randy he can eat anywhere he wants, but to remember it is easy to gain weight because of meds, and he should be on the American Heart Association Diet, and low sodium. He needs to stay on the American Heart diet and he can eat anywhere he wants? Well, I don’t know about that, I mean, honestly, do you go to McDonalds for oatmeal? No. You go for a disgusting burger (which is probably 7% beef) and fries. Do not get me wrong, I’m enough of a 70s kid that I love junk food, but we are going to strictly avoid it. It will be nothing but healthy and balanced at home!

I have turned this house inside out. I am exhausted, my housekeeper is exhausted, my entire family is exhausted, but I am so paranoid that a piece of dust has escaped my attention. I have been tossing things out as I go, and that is a good thing. We have been in this house for 20 years. 20 years! Unreal how much “stuff” you collect in 20 years. Dust accumulates everywhere! Of course, tons of my children’s things are EVERYWHERE. They are 23 and 26, why is so much of their stuff at my house? I’m working on changing that!

I admit that I have probably gone overboard on the cleaning, making changes to the house, but I would rather be overboard than not careful enough. They make you attend Transplant Class, where you are told in no uncertain terms that you must be with the patient 24/7; if you are 3 seconds late for a medicine you are LATE; no junk food, all produce washed with a little Dawn, everything cooked well, take temperature at same time every day, blood pressure reading, sugar readings, insulin shots. No cats. I mean, they stress that 15% or so do not make it 1 year post transplant, and 50% do not make it to 5 years, and a portion of that is because people do not follow the guidelines as strictly as they should. But then, Randy is told that he can eat wherever he wants. I confess, I am confused. I think it best to err on the safe side. Don’t you?

Luke and Lucy, our crazy whacko Goldens, both had a trim and a bath today, but it is supposed to rain heavily Wednesday and Thursday so I am going to board them, along with Ally’s dog who lives here (Remy). Why does her dog live here? That is another story. Anyway, I cannot be dealing with wet, muddy dogs when Randy first gets home. If Ran can eat wherever he wants I’m probably being too paranoid about the dogs….I’ve had them trimmed down like Labs, and bought some allergy stuff that supposedly disinfects 99% of the bacteria they gather while outside. I did not have Remy trimmed because he really looks stupid groomed! He is a Shepherd/Husky mix, and quite fluffy, so when I had him trimmed down a month ago, he looked hideous! Luke and Lucy (and now Remy) have slept in our bed ever since we brought them home, so this is going to be interesting. I really cannot imagine what they will make of having to sleep outside the bedroom. How will they let me know they have to go to the bathroom?

Ah, the trash guys are here to pick up all of the trash that cleaning out the house (only the downstairs so far!) has generated. Now everything needs to be painted. I’ll worry about that in the spring.

What do hips and food have in common?

October 25, 2013 By Tam Warner 4 Comments

Nothing, really. Well, eating too much can certainly have a bad effect on your hips! I am thinking of other issues however, one of them being food, meaning that Randy is having a very difficult time with the whole “nutrition” idea. Ordering from Jimmy Johns? Really? After you promised me you would not be ordering junk food? Really???? You total ass! And yes, Randy has e coli. In the lung. He tried to tell me it didn’t come from food, but e coli is a food borne illness, and you can come into contact with it a million ways. He’s on antibiotics again.

I tell him again and again how important it is for him to follow the guidelines as closely as possible. Why do people not survive the first year? Mainly because they don’t take their meds correctly, don’t eat right, do not take care of themselves! THAT is not what we are going to have here. He doesn’t like the rules. Well, tough. I don’t like to cook, but that is what I am going to be doing. Here are the guidelines (common sense for us all, really):

Since “immunosuppressive” medications make it harder for your immune system to fight infection, it is very important that you do what you can to not get sick. One way is to watch what you eat. This is because certain foods can carry harmful bacteria and if your immune system is reduced, can make you sick. To stay healthy:

– Always wash your hands before eating or preparing food.

– Refrigerate or freeze foods immediately after a meal. Eat leftover foods within 1 to 2 days.

– Wash all fresh fruits and vegetables before eating.

– drink bottled water if unsure of the water supply safety.

– Wash knives, cutting boards and food preparation surfaces with hot water and soap after contact with raw poultry, meat, and seafood.

– Consider having two cutting boards: one for raw meat and one for other foods. (DONE). and knife sets, too.

Risky Foods To Avoid:

– All raw and undercooked meats

– Sushi, raw seafood and shellfish

– Raw or undercooked eggs and foods containing them, such as, Caesar dressing, cookie dough, other batters

– All unpasteurized milk, cheeses, ciders, juices and honey

– All fresh sprouts

No added salt. Eat whole grain breads and rolls and pasta, etc. Bread should have 5 grams of fiber. And no, the honey wheat bread at the store does not count…it is just as bad for you as white bread.

Cut back on sweets.

From Duke: ”

Limit Alcohol Intake

Alcohol intake should be limited to a rare cocktail or glass of wine only on special occasions. The medications you are taking will not react well with alcohol.

Foods to Limit

Avoid the following foods before and after lung transplant to maintain a healthy weight.

Salty foods (chips, popcorn, nuts)
Canned, preserved, and/or processed foods
Red meat
Butter
Egg yolks
Whole milk, cream, cheese, buttermilk, ice cream
Fried foods
Soda, candy, cookies, cake, pie
White bread, instant mashed potatoes, other starches

Foods to Enjoy

The following foods are nutritious foods that will give you the energy you need to sustain your health.

Lean meats
Egg whites
Fresh fruits and veggies (please make sure they are washed thoroughly)
Whole grains
Six to eight glasses of water per day”

The transplant coordinator said he could drink only on special occasions, and I made sure he understood that it means maybe 2 times a year, one glass of wine, not 2 times a month with 4 margaritas. My son Wes says Randy is having “obstructive behavior”. The goal is to not eat junk food, but the immediate wish is McDonalds, thereby obstructing the goal. Well, yeah.

Okay, now for the hips. Mine don’t work very well. I do yoga, pilates, swim, dive, walk….but not all the time, because I have to go and get cortisone injections into my hips. I’ve started back working out regularly…except that my hips won’t let me walk. So I had shots yesterday, and the Doc found the exact spots, because I practically screamed all day. I finally gave in and took pain pills to make it less miserable. Sleeping was tough, I like laying on my side, and that didn’t work very well. I felt better today, but still quite sore. I’ve worked all day in Randy’s office and bath, and a closet, so at this point I have availed myself of pain pills again.

My son Wes came home to help out with some final big items before Ran’s homecoming, and now he and my brother Michael plan to “jam”. They are both guitarists, and I love hearing them play. Well, I cannot believe it, but soon Randy will be home! That, I am sure, will be its own saga!

Evolution

October 21, 2013 By Tam Warner Leave a Comment

I visited Randy at Zale Lipshy in Dallas tonight, and took him Chipotle, against my better judgment. After a double lung transplant, one is supposed to be very cautious about what one eats. I discovered the other day that Randy has contracted e coli…in the lung. He is on antibiotics, but it worries me that he has contracted an infection like this so soon. I had no idea one could get it in the lung, but apparently one can breathe it in, in several ways. Of course, I know that Ran will be immuno-suppressed for the rest of his life because of the medications, but that an infection happened so quickly has given me pause. He’s been asking people to bring him food…mostly junk food, really. Arby’s, Bar b Q, Chinese food, all things he should not be eating. Since he is on strong antibiotics I went ahead and took him Chipotle. I’m not saying that Chipotle is bad, but the foods do stay out, without covers on them. The meats, the toppings, all are exposed to the air, and to whatever bacteria is floating around. We had a talk about it tonight, and he promised he would stop asking for it, and I told him I would not bring him anything more unless it met certain standards. What are those standards? They include refrigeration, being under a case, and meals sealed in plastic. Whole Foods, Central Market, perhaps Eatzis, Start Restaurant, Dream Cafe, Company Cafe, Rise, and some others. No junk food, no Chinese restaurant take out, and bar b que.

Randy is also on a large dose of prednisone, a steroid, which makes blood sugar rise. So, although he never had any issues before with diabetes, he is now on insulin. Sugary drinks aren’t on the menu for Randy, either. Once Randy is home it will be easier as far as food goes, he won’t be able to drive, and he will have to eat what I give him. Not that I am a great cook, I am nervous as hell about it. But at least I will use separate cutting boards and knives for produce versus meat; and I know every food item will be soaked and cleaned after it is bought. Everything organic, cage free, no steroids, no antibiotics in the food. I will even have to cook meat, which is not much fun for me since I do not eat it anymore. Randy has to eat all meat well done, and to a certain temperature, which I cannot recall right now, but it is in my Lung Transplant Care Manual. So I am reading and studying and becoming more aware of nutrition, and how food should be prepared.

Oh, and no alcohol. Maybe a couple of times a year he can have a glass of wine, but that is it. Alcohol is an inflammatory item, and inflammation is to be avoided, since that sets off scarring. Oy. A lot to learn. And does anyone know when True Food Kitchen is supposed to open at Preston Center????

Travels with Tam started out as a travel blog, and has evolved into travels and journeys not only out in the world, but journeys of life, midlife, and the empty nest. I would love to hear feed back from my readers on the type of posts you prefer. The next year may involve some trips, I am hoping to get in a few dive trips, and hoping that Randy can travel to Lake Tahoe, or perhaps northern California/Pacific Northwest, but I think it is going to be a year of journeying through life, and change. I plan to start posting the trip Randy and I took last December to Socorro, on the Solmar V, soon.

I started back to my walking and to yoga…but it has been an uphill climb. The vigils at the hospital and the events of the last months have contributed to a bigger bottom line for me, ha ha. It seems easy to get out of the work-out/eat right mode since these activities can be very painful (I’ve had two back surgeries, sigh). It’s not an “age thing”, I’ve gone my entire life with back pain. My best activity is always in the water, snorkeling, diving, swimming…it supports my spine and hips…movement without pain, freedom of movement, and a true sense of euphoria in the underwater realm. Walking, lifting, and even yoga, which has so many wonderful benefits for me, can be a physical challenge, and man, it is a big challenge right now. I walked 10 minutes on the treadmill…then off to stretch my hips and legs, then another 10 minutes on. I did 45 minutes yesterday. Then I did a little weight lifting. So, since Randy can only have healthy fresh food, and will have 3 physical therapy sessions a week after he gets home, the time is now for me to get my workouts moving. I just wish I had a nice, clear ocean to dive in, to help me physically and for my peace of mind. Dallas for now though, will have to do.

Transplant. An Unexpected Journey

Risky Foods To Avoid:

Limit Alcohol Intake

Foods to Limit

Foods to Enjoy

Subscribe to Blog via Email