Happiness is an Inside Job

Dear Mrs. Lindberg
I wrote this after reading one of your blogs. I've gotten quite the response and wanted to share it. Richard Borden, Akron OH.

A couple days ago I posted a really good essay by Rebecca Lindburg about some of the feelings and emotions of having this disease called Pulmonary Hypertension, I now think I can do better by stepping up myself.

18 years ago Dec. 11th last I married Kat. There were many obstacles that had to be overcome to get there. I['['3
'm saying we both fought hard for this marriage. That makes it special like anything that doesn't come easy. We love each other and more importantly we Like each other. (humor and affection will carry you much farther than just love.)

11 years into the marriage I started having problems, I went to our doctor complaining of breathlessness my pulse ox was low enough the nurse lost her composure. The next thing I knew I was getting a choice from my doctor of a very expensive ambulance ride or having my wife take me straight to the ER. I spent over a week in the hospital poked and tested within inches of my sanity and then they gave me a label for what was wrong with me and a tank of oxygen to ameliorate it. They called it "Obesity Hypoventilation Syndrome" Dr. speak for "it's your fault, because you're fat." and there I sat with my O2 tank for the next 7 years.

Then one day I got worse. My legs and ankles swelled, old wounds on my leg opened, I was way more out of breath than usual. I knew enough to know these combinations were bad and took them to my family doctor. First there was an xray, and he frowned and then there was an echocardiogram and things went into overdrive and for the first time I heard those words, "Pulmonary Hypertension". It turns out it wasn't my fault, it wasn't any bodies fault. I had a disease. A rare horrible disease with no cure. A disease classed as terminal because eventually it WILL kill you.

Then came the tests, lots of tests, Blood tests, x-rays, CAT scans, more x-rays, something called a sniff test, a VQ scan where you breath in radiation and they take a snapshot of your lungs then they inject you with more radiation and snap another shot of them. More sleep studies. A six minute walk, Pulmonary function tests, All ending 4 months later with the piece de resistance the 'Right Heart Cath' a fascinating procedure I describe as having a hollow knitting needle jammed into your jugular vein and then having 4 feet of tube the size of thin spaghetti snaked through it into your Vena Cava, through your right heart and into your lungs so they can blow up balloons and take pressure readings all done with local anesthesia.

And in between the tests there's the waiting. The endless maddening waiting. Waiting filled with questions no one will or sometimes can answer. Why? How? What next? Is there a next?

So you go looking for answers and they don't look good. You find out quickly you have to be choosey of sources. Things three years old are outdated as if ancient history. Articles 6 years old tell you, you can expect 2-3 years life expectancy more recent ones 8 years possibly 15.

Meanwhile I'm getting worse. I'm tired, bone weary tired, ALL the time. I have my pride I've already been stripped of my power as a wage earner and I've made up for it by picking up the household chores for the past 7 years. The shopping, the cooking, the laundry, the cleaning, (Well actually I always sucked at the cleaning.) Now I'm falling more and more behind. If I do the shopping or the laundry there's no energy left to cook. I need naps. Going upstairs is like climbing Mt Everest. You avoid it at all costs till you have to, you need to stop two sometimes 3 times on the way up to catch your breath. Some things like bending over to tie your shoe or put on your socks get really hard. There comes the day you can't and you have to ask your wife to do it for you and it's embarrassing and you cry.

You apologize, and your wife gets angry because there's nothing to apologize for. "I'm sorry. I'm sorry I'm sick. I'm sorry my med's and my copays are stretching our budget to the limit. I'm sorry dinner's not up to my usual gourmet standards. I'm sorry the dreams and plans and somedays we thought might be possible all just got thrown in the garbage. There'll never be a small cabin in the woods with a fireplace." I say I'm sorry for all this and so much more, and the more I say it the angrier she gets. Because it's not my fault. Because she's NOT sorry. My psychologist tells me over and over, "flip it around. If SHE was ill, how would you feel? How would YOU handle it? Would SHE have anything to be Sorry for?" NO!

But the thing I'm mostly saying I'm sorry for is the knowledge that someday I'm going to be the cause of her greatest grief. I'm sorry I probably won't outlive you. I'm sorry that someday too soon you'll have to learn to live without me. I can and have dealt easily with my own mortality. It's the knowledge of your grief I can't handle.

So, I'm driven. Driven to follow my diet and lose as much weight as a can. Driven to work as hard as I can at my exercise sessions. To take my drugs promptly and properly. to not let my Oxygen run out. To avoid the day I will be sorry to leave you as long as I can.