Sunday, May 31, 2009


May 31, 2009

Well, I'm back home after my very shortest hospital stay. Recovering from my fourth heart cath and the owner of another stent bringing the total to eight. I was a lot less sedated this time and actually had to endure the 6 hours of laying still without sleeping through it so it was a totally different experience this time. As I was waking up in the surgical room I thought the doctor was just beginning but he was really finishing up - oh how I love the drug "versed."

So now I have eight stents - the last one inserted inside a previous one. The doctor says that as my heart disease continues I could need more just to keep the blood flowing. Obviously there will come a time where there is no more room. He sadly told me I was truly their most challenging patient ever and I'm thinking, "well, here I am again as the most "unique" case in the group. The story of my life." The heart disease is well advanced and aggressive and nothing can be done now to stop it. And even though there was evidence of new collaterals (blood vessels) growing it won't be long until they succumb to the progression of the disease as well. The medical challenge now is balancing the treatment of the heart and the kidneys because the medicines often conflict each other. But my cardiologist says that the heart will always trump the kidneys. There is also the problem of distinguishing my chest pain between the chronic can't-do-anything-but-live-with-it pain and pain that indicates a stent or something else has gone very wrong like what happened this week. But the doctors admit that even they don't know how to tell the difference.

More than once this week I have been asked, "So how are you feeling about all of this?" and I really haven't had a response. To be honest I'm mostly in shock. I wasn't surprised that there was something serious wrong when I went to the doctor on Tuesday. In fact I came very close to taking a packed "hospital stay" bag with me thinking that I was going to hear "We need to put you back in the hospital." But when my Cardiac RN roommate tried to reassure me that she didn't think that would then I wrote it off as my overactive imagination. I wish I had been wrong.

I guess mostly I am numb. And when I am not numb I am dealing with anger which is so rare I hardly know what to do with it. I'm angry because once again I've lost control of my life. There are things I want to do, places I want to go, people I long to visit and none of them are possible right now. And just this week I've had to hear the word "no" to somethings I actually begged God for and frankly I didn't really handle it well at all.

One thing I learned when I was very ill several years ago is that handling disappointment is one of my biggest weaknesses. This tends to be a problem for most people with terminal or chronic illnesses because anticipating anything different from laying in bed or being stuck in their homes is a major form of having hope. The simplest of things - a visit from a friend, a trip out for lunch, a movie can all be things that you look forward to for days. I read about this "anticipated hope" in a book instructing friends and family how to help their terminally ill companions. Then I understood why a cancelled visit or trip out of the house was so traumatic for me. I tried to politely warn my friends to not make plans with unless they were very sure they could keep them.

Of course, I know this doesn't absolve me of the responsibility to respond maturely and trust God when things fall through or are postponed. But unfortunately, it just takes me a while to calm down - and eventually I do.

But why is it hard? Because for people who are dealing with a terminal or chronic illnesses are faced with losing control of their lives every day. Sometimes this happens gradually and other times overnight. Being in the hospital puts a patient on a whole new schedule and they are suddenly told when to wake up (usually at 4:00 a.m. for blood tests and vitals signs), when to eat, when family members can visit and when they have to leave, what to wear and even if you can wear your underwear or not. Sometimes the only things you GET to choose are the TV shows you watch and maybe your menu to some degree. When you get to actually make a choice of something you relish the opportunity.

Being home doesn't always make this any easier because there are medicine schedules to follow, new diet guidelines, many activities no longer allowed and trips out become less and less frequent - if at all.

And here is where I find myself. Unfortunately, knowing why it is hard is not helping me pass the test too well. I'm losing more and more control of my daily life and I'm kinda like the puppy that only remembers that he used to fit under the coffee table and can't get used to the fact that now he's too big now to get under it.

In my mind I can still go where I want, when I want and stay as long as I want. The reality is that I can't make a three hour road trip - let alone the 10-12 hour ones I did just a year ago. I can't go to the grocery store AND out to lunch on the same day. And I can't make plans to go across the country to visit family and friends at my own schedule. And this leaves me the most disappointed because I am longing to visit family, friends and places this summer but instead must face and accept my new limitations - with great disappointment.

So, be patient with me friends. I'm really trying to adjust but it's coming very slow for me. I hope you don't have to observe one of my meltdowns - I'll try to keep them hidden behind closed doors.

From the Heart,