LIFE Archives | TRAVELS WITH TAM

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.

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!

LIFE

Risky Foods To Avoid:

Limit Alcohol Intake

Foods to Limit

Foods to Enjoy

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