LIFE ADVENTURES AND JOURNEYS Archives

And the Wheel is on the way back up?

April 5, 2015 By Tam Warner 16 Comments

the wheel keeps on turning! — the wheel keeps on turni

Wheel in the sky keeps on turnin’, don’t know where I’ll be tomorrow, wheel in the sky keeps on turnin’…..(Love you, Journey!)

The wheel in the sky, the wheel of fortune, the never ending roller coaster, has been pretty relentless the last few weeks. 2015 has been relentless, now that I think about it. And yes, both Randy and I have learned from it, and I don’t want to tempt fate, but thankfully we may be headed into sunnier times.

I know spring came, but I missed it. 2015 has been one thing after another. Randy (who had a double lung transplant 9/13) was in the hospital for 2-3 weeks in January and February with a terrible virus called CMV. We had plans to go to Cozumel, (he couldn’t go, I flew home when he was hospitalized) and we also had plans to go to Shamrockin’ for a Cure for Cystic Fibrosis in Atlanta in early March. Then we were headed to Savannah (because we like it there) and Charleston’s Isle of Palms to vacay with family. We had an Engagement Dinner for our daughter and her fiance (it was fabulous!).

We had a great time in Altanta, and at the party. However, we learned an important lesson: when the transplant doctors say do not be around people who are symptomatic, they mean DO NOT BE AROUND PEOPLE WHO ARE SYMPTOMATIC. Now, this one sounds a lot easier than it is. Our friends were symptomatic, coughing, etc. They had been to their doctors and been told they weren’t contagious…so we stayed. Remember this lesson: do not be around people who are symptomatic. Regardless. Period. End of story. No matter how much you love them, and no matter what their doctor says.

Randy’s immune system was trashed by CMV, it was so low they thought the reading on the blood test might be off. Knowing that Randy was especially susceptible to infection, we should have stayed in Dallas until his readings were better. Let me say that again, because we have another important lesson: we should have waited to travel until Randy’s immune system was stronger.

Beautiful Tybee Island, just off the coast from Savannah

I came down with it first. Sick in Savannah, I stayed in a separate bed next to an open door, hoping to not spread it. I immediately went on antibiotics. They did not work. We go to Charleston, and I cannot stop coughing. I go to a Medical Clinic, they diagnose Acute Bronchitis, give me a breathing treatment, and different antibiotics. I start feeling somewhat better (but not really). Of course, a couple of days before we are supposed to drive home from Charleston, Randy gets sick. This time, I don’t mess around, I put him on a plane to Dallas because I want him near his transplant team. I drove home (it took 3 days) and we had a couple of nice days together until the clinic called: Randy now has RSV virus, and must be hospitalized for 5 days to undergo intense breathing treatments. Here we go again.

I started to get even worse. My doctor’s PA says, hey, its viral, stay in bed, you are dehydrated so drink a lot of fluids, run a vaporizer, and sleep as much as you can. I moved upstairs so when Randy came home he wouldn’t be around me. Now it is Sunday, and I finally, finally feel human. It has been 3 weeks. At least I am feeling better now. I hadn’t been this sick in a very long time.

Our son is getting married on May 3 in Austin, Texas, so we have a great celebration coming up. But here’s the issue: the weekend before his wedding, one of our closest friends is getting married in Florida. Should we go? Or not go? Randy has to be well for his son’s wedding, no question about that. I guess we will leave it up to the doctor, and check Randy’s immunity before we think about it. My brain is too fuzzy to even contemplate traveling again soon. I may change some airline reservations.

So this is where we are. “Life is what happens when you’re busy making other plans.” Yes, John. Exactly.

Another Surprise from Transplant World

March 26, 2015 By Tam Warner 6 Comments

At Shamrockin' for a Cure, March 7. — At Shamrockin’ for a Cure, March 7.

One thing I can say about living in Transplant World: it is never dull. Actually, we could all use a little dull.

Randy and I went to Atlanta earlier this month to attend a Cystic Fibrosis Fundraiser, and while there, we both caught a bug. The rest of our vacation was spent fighting illness, on and off. When Randy started with symptoms, I made arrangements to get him home….fast. We were near a couple of transplant centers, but we had no confidence in them because Randy had a blood test at Emory in Atlanta, and it was complete SNAFU. We never did get the results, if you can believe that. I made reservations, put him on a plane home from Charleston, and drove home by myself.

When he went to the doctor here at UT Southwestern, his lungs were clear, and he was already beginning to improve. Ah, sweet relief. Yesterday morning we walked our dogs, Luke and Lucy, ran some errands, and began talking about getting life back to some sort of routine. Yesterday afternoon the Transplant Clinic called with the news that Randy tested positive for Respiratory Syncytial Virus, a respiratory virus which is as common as the cold, but in those with compromised immune systems it can be very dangerous as it can cause pneumonia. Last night Randy was admitted to an Isolation room, and will have breathing treatments 6 hours on, 2 hours off. He is not allowed visitors. Hopefully, it will be 5 days then he will come home. Maybe then we can get to some kind of a routine?

Life never runs along simple lines, it seems. I wrote a blog the other day about the importance of doing what you want to do NOW. To that I hold! Go and do things now! You never know what is around the corner, and I am hoping that the next corner will show us something marvelous…but until then, breathing treatments!

A Lesson about “Normal”

March 23, 2015 By Tam Warner 19 Comments

Normal is a very subjective word. What is normal for one person is certainly not normal for another. At midlife I am rediscovering some pretty simple truths: normality differs with each stage of life. As an infant, it is normal to be cared for, and normal to reach milestones while gaining physical capabilities and life skills: sitting up, eating, crawling, walking, riding a bike. It also appears to be normal for human beings to want to hurry….when you are a child, you want to be a teenager. When you are a teenager, you want to be 21. When you are 21, you want to be a real adult and lead the life you have imagined (which will probably not be the life you imagined at all). In your 20s, you probably want to fall in love, get married, and have children. This is the “normal” progression, at least within middle class America. The millennials have been called an unlucky generation because they are unlikely to achieve more than their parents did. If the economy continues down its current path, this generation will end up with much less, through no fault of their own. Millennials have been born into a changing world, and may actually have the greatest opportunity of all. Maybe they will change everything our generation wanted to change, but did not. Millennials may be able to change “the norm”.

Not long ago I heard someone in their 20s say, “we need to have a baby soon so we won’t be “old” parents and too old to have fun after our kids leave”. Whoa. That is putting the cart far out in front of the horse. Why not do all of the things you’ve dreamed of doing, but do it now, before you tie yourself down for the next 18 years plus with children and mortgages and bills that have to be paid? Enjoy your life! Why not have kids in your mid 30’s, even at 40? You want to have kids now so you can enjoy yourself later down the road? I have to tell you, there is fault in your reasoning.

How do I know this? I know this because I have lived through everything that you have lived through, and everything you want to live through. I’ve also lived through things you do not want to live through, but probably will have to. When you get to this side of life where your kids are raised and you supposedly can do what you want? Something usually screws it up. It could be money, health, death, divorce, or any other number of things. The time to have fun and live your dreams is on the front side of life. I always knew this fact, but my husband’s illness and near death has given me a sharp reminder, so I will share this wisdom with you (though you probably won’t listen because you think I am a fossil, even though I still feel vibrant and young).

First, how do you know you will live long enough to see your kids grow up? You don’t know. Half of people who marry in their twenties get divorced, so you might have to deal with ending a relationship, though I hope not. I’ve seen a lot of people get divorced, and it does not look fun… Put kids into the mix and it becomes ugly. It is normal for relationships to fail, and it is normal for them to succeed. It is just a fact of life.

There are harsh truths to face on this side of the life cycle. When you decide it is time to go have fun, your parents will become ill and they will die. You may need to help them financially. You will watch them become frail, you may lose them far before their time, and long before you are ready to be without them. Everything you build up, everything you gain as a striving adult…must be relinquished as one ages. It is just the way things are…it is normal. I lost my father when he was young. It never occurred to me that my husband could also get ill. I should have known better and remembered what the “real normal” was like, but Randy always seemed invincible. He has gone through a life changing illness, and it has changed everything in his life, in my life, and in our family’s life. This is not unexpected…but somehow, we just never expected it to happen. How could it possibly have happened? And yet, it has, and this is “normal”.

So when I say, do it now, I mean…do it now. Tell people you love them now. Spend time with those you love now. Learn to speak another language now. Walk your dog now. If you want to travel, travel now. Now is your time. You do not have a timetable you have to keep in order to be successful. There is no longer a playbook…so I suggest you write your own. Make your own timetable, and live the way you want to. Life changes quickly, so you have to adapt. I too, have to adapt. It’s normal.

My twenty-something children are both marrying this year. I hope they lead full, satisfying lives. I hope they find adventure and value and real worth. I hope they take time to enjoy one another, to look beyond their own worlds, to taste all sides of life, and to fulfill their dreams….but remember, there’s no rush. Luxuriate in the time you have, and that time is now.

Tomorrow is promised to no one…and that is normal.

Fab Photos Friday….sort of!

March 20, 2015 By Tam Warner 4 Comments

Oy, what a trip! We’ve seen dear friends, attended a fabulous charity event, and spent time with family…all while trying to fight off illness. Today I am sending Randy home by plane…he is becoming ill, and I don’t want to take any chances. Our son is getting married in 5 weeks….Randy must be well for that.

We were hopeful that 2015 was going to be a great year….but so far….NOT. Randy has spent most of the year so far ill. sigh. But, I am hopeful things will get better. Always look on the bright side of life!

Here are some views from the last two weeks:

Randy gave me his heart...in potato chip form. — Randy gave me his heart…in potato chip form.

Savannah's Leopold's Ice Cream! — Savannah’s Leopold’s Ice Cream!

View of Wrightsville Beach, NC from our friend's home — View of Wrightsville Beach, NC from our friend’s home

Being Irish for a Good Cause!

March 17, 2015 By Tam Warner 2 Comments

The Verizon Wireless Amphitheater was Shamrockin’ last weekend….Shamrockin’ for a Cure for Cystic Fibrosis! Our dear friends Murph and Nancy have been deeply involved in the event since its inception 7 years ago. And how it has grown! Randy and I have been trying for the last few years to get to Atlanta (Alpharetta) for the event, but Randy’s double lung transplant, recovery and illness has always gotten in the way. This year, however, we made it, and we are so glad we did! What a great evening of food, music, people, and fundraising for a good cause! Generosity filled the air, and Shamrockin’ for a Cure raised more money than ever before! As the Irish say,

“Always remember to forget
The troubles that passed away.
But never forget to remember
The blessings that come each day.”

We were thrilled that 2 weeks sold for 19,500.00!!!!

2015 sham murph and ran — Murph and Randy

Transplant World: Let’s try it again!

March 2, 2015 By Tam Warner 16 Comments

The last try: In January Randy (who had a double lung transplant in September 2013) and I were going to Cozumel with friends, and Randy had been cleared to dive! Instead, he ended up in the hospital fighting the CMV viral infection. It was a serious viral infection, and it took him 2 weeks in the hospital, and over a month at home with IV medications to get to this point: his CMV viral count has gone from 500,000 to 234! So we are going to try it again. Sort of.

On Friday Randy had his last weekly dose of Cytogam, a strong anti-viral med which has to be given by IV and administered by a nurse. From now on, it will be monthly infusions until his count is zero. He is no longer taking his daily IVs but has switched to oral medication, Valcyte…and all lung transplant patients are familiar with good old Valcyte! An appointment with his transplant team is scheduled for Tuesday, and if all is well, fingers crossed, we’ll be heading off on an adventure! Our plan is to go to Atlanta for the Shamrockin’ for a Cure for Cystic Fibrosis fundraiser on March 7 followed by a trip to Savannah and environs, and then a trip to the Isle of Palms outside of Charleston, SC. for some beach time. It may not be a dive trip in foreign lands, but a road trip in the good ol’ USA makes sense right now….the land where Transplant Centers can be reached if need be.

I missed a trip to Vegas with my daughter and her friend in late January, which was sad, but the girls went and had a great time. They saw Britney Spears…a rock idol of their teen years. They said the show was awesome…mostly because of the costume changes and lighting. I know I’ll be able to go back soon, but I really did want to be with the girls. Oh well. Next time!

Last weekend we held an engagement party for my daughter and her fiance at our home, and it was an absolutely lovely evening. I blogged about hiring a party planner for it because of Randy’s illness and all the confusion, and believe me, it was well worth it. Minted Artistry is named well, it was definitely artistry! I cannot thank Marian Timmer enough for a spectacular evening. Enjoying my own event was fantastic…and I plan to do it again!

Diving in the south sounded good to me, so I checked it out and discovered that the PADI 5 star dive center was not open right now. I had planned to dive in the Cooper River where there are ancient fossil beds full of shark teeth. And I mean mega-sharks, like Megoladon, who may, or may not be, still around (*this photo is from Sarasotafins article “Debunking the Discovery: Megalodon is dead.”) I was in a cage when a Great White Shark accidentally came in, and truthfully, I hope Megalodon is no longer with us, because if it is, it could swallow the damned cage! I did get a piece of advice from a reader to visit Edisto Beach for shark teeth, though. Excellent.

I love Savannah and Charleston, and plan to go to the Tybee Island Marine Science Center off of Savannah. The director has been kind enough to offer me a tour and a beach walk! I’m very excited to go….they help with sea turtle rescue in the South Carolina / Georgia areas. I will be sure to take many photos of the center and the beach.

We are meeting family in Charleston, and I look forward to some great history tours. Maybe a ghost tour of Charleston? I will have to look into that, one of my cousins is very into ghosts. I also want to try a few of the finer dining options in Charleston and Savannah. I’m doing my research, but if you have any suggestions, please let me know!

Keep your fingers crossed….

LIFE ADVENTURES AND JOURNEYS

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