Who’s Got Your Back?

I’ve spent much of the morning filling out paper work from the transplant center.  There is a contract in which you promise not to smoke, drink, miss appointments or generally engage in any behavior not pre-ordained by the center.  Both before and after the transplant.  I must agree to random drug testing for nicotine, alcohol and other substances.  Failure to comply can mean getting dumped from the list.  Fortunately for me, I gave up all my vices years ago, so this part is a breeze.

The form that gave me the most pause was the 24 hour care plan.  My need for 24 hour care was driven home repeatedly during my evaluation. I mentioned years ago that Rick and I are sort of thin on kin.  His words, not mine.  My sisters-in-law reminded me that that is categorially untrue. They are right.  The real issue is my unrelenting independence.

For the first time in my life, I will need to ask for help.  I’ve had a couple people already offer to be part of my care-giving team without being asked. That warms my heart more than they can ever know.  Rick will be the biggest part of my team.  He always is.  But he can’t do it alone.  We plan on hiring private nursing care and we are incredibly fortunate to be able to do this.  I may have to solicit a few people for relief or transportation.  And, most importantly of all, I hope to continue at my current level of health and to NEVER need a transplant.

But all of this has got me thinking.  Are my relationships a mile wide and an inch deep? How many people would I ask to take a week out of their lives, possibly taking vacation, to tend to my every need?   I don’t think it’s just me.  It’s the world we live in.  We are a fiercely self-sufficient lot, the whole puritan work ethic and all.  It’s also a result of the stage of life we’re in.  At this age, we can afford to hire people to take us to the airport, pick us up, water our plants, and get our mail. Things that when you’re young and poor, you do for your friends and neighbors.

I could easily blame this scarcity of care givers on the fact that my parents are both gone and that Rick and I chose not to have children. There is no question that a bigger nuclear family provides care giving options that we just don’t have.  But I do have extended family and friends, lots of friends.  But no matter which way I slice this, I have chosen a somewhat solitary life and now I’m facing the consequences.  I have Rick, so I am fine.  But this is a huge problem in our world today.  There’s even a term for it, “elder orphan.’

When the discharge nurse came to my room after my longest hospital stay, I said, “I am so happy to see you.  You must be the most popular guy in the hospital.” He said, “not always.  Some people don’t want to go home.  They have no one to go home to.”  That just broke my heart.

So, where am I going with all this?  I’m not sure I know.  Here’s what I do know.  We have to be more real with our friends.  If we only present to them our best selves, then it’s not realistic to count on them in our darkest hours.

We should be generous with our time.  I have some examples of what friends have done for me; driving six hours just to have lunch with me. Another hired a babysitter so that she could sit with me in the hospital as I recovered from a procedure.  These are just two examples.  Other people have brought me food, given me rides.  Come to visit.  I appreciate all these gestures.  I’m not used to this level of kindness.  I am not used to needing help.

We also have to do unto others.  Guilty as charged.  I rarely prepare a meal or offer to help out.  I am not only self-sufficient, but self-centered.  I don’t want to be inconvenienced.  I need to work on this.

We need to surround ourselves with the right kind of people.  If there are people we consider friends who we wouldn’t call for a ride, or a meal, or to come keep us company, we need to reevaluate what it means to be a friend.  I call these other people acquaintances. There is not a thing wrong with acquaintances.   I have more acquaintances than friends.  Friendship requires time and energy to nurture and there’s just so many hours in the day.  There most certainly is a cap to the number of friendships you can maintain.

At the heart of it is love and authenticity.  Besides just filling out forms, I’ve had lots of time and opportunity to ponder the meaning of life.  At the transplant center, I am surrounded by people who would not be here if it were not for this miracle of modern medicine.  I look at all of them.  Every race, age, gender, walk of life.  Each one is fighting to stay alive and I have to ask myself why?  It can’t just be the fear of death.  It has to be something greater.  With the guidance of the psychiatrist and the social worker, I learned that no one can go through this process alone.  It requires a support system.

While support system sounds like a clinical term, it really is pretty simple.  Do we have people we love and who love us back?  Are they willing to give of themselves to be part of our lives and do we do the same when we are able?  Are my relationships with these people worth the pain and suffering that will come with the transplant process?  You have to have something to live for, when living may not be the easier choice.

Do not rush to sign up for your time slot.  There isn’t a sign up list and, God willing, never will be.  Doing all this paperwork has played with my head.  I”m not usually this philosophical. Bottom line, let’s all just pledge to be better friends.  Let’s have each other’s backs.

A New Normal

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May wasn’t merry. Not by a long shot. I had two scheduled surgeries and one unscheduled trip to the ER that landed me in intensive care. And things had been going so well…

First of all, I had my pacemaker replaced. No big deal. It’s my fifth one and for the very first time I was able to go home the same day. But several days later Rick found me unconscious on the kitchen floor. I had started having ventricular tachycardia (VT’s) again. They had been silent for the past 3 years. Once we got to the ER I started having them incessantly. 26 in one hour. No shocks, thank goodness. I was paced out of them. But it scared me and the medical staff. Each time it happened the alarms would go off and everyone would run to my room. They decided I could be better tended to in the CCU. That was an experience I hope to never repeat.

In addition to my heart problems, I also have some ill defined problems with my lungs. Well, ill defined until now.  I’ve had lesions in my lungs for quite a few years. I get an annual CT scan to check their progress. Well, this year of all years, the lesions were worse. A bronchoscopy a few years ago was inconclusive. One theory was that I may have sarcoidosis, an autoimmune type disease that can attack any organ. It would explain the scarring in both my heart and lungs. It is impossible to diagnose without a biopsy.

So again I headed to the hospital for a surgery called a VAT’s wedge resection. It was no small surgery. Three incisions through my ribs including a chest tube. Rick says I look like I’ve been  hit by shrapnel.  The diagnosis was confirmed, sarcoidosis. This disease has caused damage to my lungs and a lot of damage to my heart. While the damage cannot be undone, the progression can hopefully be stopped by taking high doses of steroids. I’m in week four of the prednisone, and thankfully I’ve had few side effects.

Now on to the really big news. TODAY I GOT ACCEPTED TO THE TRANSPLANT LIST. When I was in the CCU, my doctor said it was time to apply for the heart transplant list. He said that the process is so cumbersome and time consuming that if you wait until you need a new heart, it is too late. I think of it as a pre-approved mortgage when you’re not even sure you are in the market for a house.

He was right, the process was thorough. They checked out every single part of me. I even had an x-ray of my teeth. I met with a financial consultant, dietitian, social worker, psychiatrist, and the transplant surgeon. I had vials and vials of blood taken each time I went in (six days in all). I’ve been tested for HIV, syphilis, nicotine, alcohol, cannabis, barbiturates, methamphetamine, cocaine and opiates, among other random things. I had numerous cat scans of various body parts. I had my blood pressure taken on my big toe by the tiniest little blood pressure cuff you’ve ever seen. I peed into a jug for 24 hours, much harder than it sounds. This is in addition to all the heart tests I had while in the hospital. Of course, the transplant team is concerned about my lungs. If they are healthy enough to warrant a new heart. My pulmonologist submitted a letter that they are. The team is requiring further testing when I get back from California.

It’s surreal to me to be in this place. I’ve had 16 years to deal with the gradual decline of my heart function. It’s been so slow as to be almost imperceptible. You get used to your new normal and don’t realize that the new normal changes year to year. But I’ve also had three very serious rhythm events. Each time I’ve landed in the ER. These VT’s are the real danger, not the weakening of my heart muscle. Although that could also kill me. I don’t particularly want a new heart, at least not right now because I am very functional. My quality of life is good, not great, but good. But as I get weaker and it becomes harder and harder to breath, I will welcome the option of a new heart. It’s scary beyond all belief, but it is also a miracle. A chance to prolong and possibly improve my life. I am blessed.