Dale with her son Sean at Edinburgh Castle
It was Super Bowl Sunday 2006, late in the afternoon, when I decided the game itself was not all that amusing. I was tired, horridly tired. I had been on the road speaking at meetings all over Michigan about Medicare Part D. Six to seven meetings a week in really frigid cold. I've spent the last 26 years as a healthcare consultant.
In the past months, my breathing was more and more labored; the colder it got, the worse it got. I'd been home just a few days; my son and a wondrous group of high schoolers and my husband Russ were all downstairs watching the game. All I really wanted was a hot bath. My thought was that it would help my breathing, open up what my doctors had been treating as asthma, maybe allergies.
All I remember is falling to the ground; I couldn't breathe. I'd been in the tub; the water was nice and warm. The perfect bubble bath. Then I tried to get out; the bath had made my breathing worse. I woke up on the bathroom floor on the rug beneath the tub. I tried calling for Russ; he picked me up from the floor.
My breathing had gotten worse over those past four years. I used the excuse that I had been working full time while trying to take care of my aging parents: my mother with COPD and emphysema, and my Dad with a closed head injury and a number of brain bleeds after Mom passed away. I knew asthma and allergies ran in the family. My family doctor tried, but really nothing worked.
The next morning, my son drove me to our family doctor, and with my oxygen level down to 40, I was rushed off to the local hospital. After three days of every test imaginable, things were no better.
It's funny when I look at it now, but I had just talked two nurses into helping me wash my hair right there in my bed. It was right after the dinner trays had been taken up, and a solemn doctor I'd not met before came into my room. He introduced himself as the director of the pulmonary department. He began to tell me that nothing he had done, none of the medicines, had worked, and it started to get surreal for me. I just remember him saying, "You're going to die, maybe six hours. I've no medicines to give you." In my head, I was saying, "Right, you must be kidding. I just washed my hair. You're wrong; I'm not going to die!"
According to my husband, the next few hours were frantic, although I didn't know all that went on until much later. It seems this doctor had picked up the business card of a physician from another hospital who had spoken at a conference about a very rare, very difficult to diagnose lung disease. The real problem is that he had no number for her. After trying everything he could think of to reach her through the University of Michigan Hospital, he and my husband Googled her, used a reverse directory, got her home number, fibbed to her daughter, got her cell phone number, and saved my life. Her name is Dr. Valerie McLaughlin.
From that moment on, my life changed forever. I had primary pulmonary hypertension.
Things that change your life should be things like times with your parents, your first kiss, the birth of your children, marrying your best friend. Not getting a fatal disease. Yet if you go to the Mayo Clinic site and type in disease and stress, you'll have more than 500 diseases that can definitely kill you, including PH, many cancers, and immune diseases.
I spent more than three months in the ICU at the University of Michigan. I found out later that there were six other patients in the ICU at the same time, all with PH. All of us were very sick, and all six of them died in that ICU. Why did they die? Why was I alive?
I was at level 4. I was terrified of the medications and what was happening to me. Still I believe something in my heart stirred in those three months. I really wanted to live. And (chuckle) I wasn't going to let anyone stop me.
Since most of you have spent a few (and I use this almost jokingly) days, weeks, months, etc. in the hospital, you all know how hard it can be to get real information, stand up for yourself, even keep yourself sane. First, we're weak, terrified, scared, mad, sad, and generally not in the best mood. Second, we have to put ourselves in the hands of our doctors, nurses and family. We seem to have little control of our fate.
In fact, you have much more control than you know. Let me share a silly story that might help.
Dale with her family outside the Louvre
One day, during that first three-month stay, a resident with a very superior attitude came into my room. I'd worked with her for a few days now. She was always right and very indignant about her authority ever being questioned. And today, without my thinking about it, I was going to make her very unhappy.
She stormed into my room at 7:00 p.m. She announced she had ordered me to have a feeding tube put in my stomach. I asked, "Why on earth would you do that?" "Well, your protein level is dangerously low; it must be done at once." I told her absolutely not. I reminded her that I had not eaten any food for more than 48 hours because I was scheduled for tests where I had to fast. Each time an emergency came in, my tests were rescheduled and canceled again. With no food there can be no protein.
She said just the same, she was having the tube put in. I said, "Absolutely not and you are to leave my room immediately." If looks could kill, I would have been dead. She left, slamming the door. About five minutes later an older gentleman doctor quietly knocked on the door: "Can I come in? I'm sorry, I'm not one of your physicians, but I have to ask, what on earth did you say to that resident?" "I just told her no," I said. He looked at me and said, "Oh, my word, I don't think anyone has ever said that to her before."
The next morning my protein level was back to normal, and she was in a state of shock. Want to know my secret? After she left, I called my son, who was an hour away in Rochester Hills, and asked if he wanted to skip his first hour of high school the next day. He said, "Sure, Mom." So I told him, "Ok, then go to Rams Horn (a 24-hour diner) and get me a tuna sandwich and three scrambled eggs and wheat toast. I'll tell the nurses you are sneaking up."
Standing up for something you know is wrong is the right thing to do. It may be right to say no to a doctor, especially if you want more information or need time to reason it out. Being your own advocate is a very important piece of healing.
I've got so many stories I'd like to share with all of you. This journey has been, of all things, a wonderful experience. I know, that's hard to believe. I have truely been blessed. I started a book a little over a year ago, "Sisters by Another Mother" (copyright 2010), to try to explain what's been happening to me.Hopefully it will be finished soon. I do want to add one more story that I hope gives you the courage to find the dreams you thought PH had destroyed.
My father, William Kales Rankin, died just a few months before I was diagnosed. He was a wonderful, active gregarious 83-year-old until he had a closed head injury and a series of brain bleeds. He needed full-time care in an assisted living facility, as well as twice weekly two-hour sessions with occupational and physical therapists and a great variety of other doctor appointments. Even his eyes and ears were damaged by the brain bleeds.
Weather permitting, he came over each Sunday for dinner, and we grilled on the back porch. One Sunday, during the Christmas season, a few weeks before he died, he grabbed the corner of my jacket and pulled me down in the sofa seat next to him. Sometimes when he spoke to me, he seemed very confused and spoke gibberish. Today he looked right through me and said, "The boys will still go to Scotland, and you too."
My father's family is from Scotland, and for as long as I could remember, he had wanted me to take my sons to Scotland to see where their ancestors were from. For nearly five years after I was diagnosed with PH, I truly believed that could never happen. I was on disability. I had a pump connected to my body, I took 17 pills, and I was almost always tired. One day, holding on to a cart in Walmart, I made a very conscious decision. Every day I would walk; I would walk until I could walk one mile without holding on to anything.
Some days were horrid, but it did get better little by little. I was no longer on oxygen during the day. I did better and better on my six-minute hall walks. Finally, Dr. Rubinfire (the other doctor who saved my life) gave me a revelation. He said, "Do you understand what's happening? Your heart pressures are amazing, and your hall walk is now faster than 95 percent of the healthy women your age."
I think I must have looked stunned because I asked him to say it again. Only a few years ago, I couldn't get out of my bed. Large oxygen tanks were with me wherever I went. I couldn't walk down my stairs. It took me an hour to go up the stairs on my butt. For six months, after the three months in the ICU, I didn't even leave my bed. Now he was saying I even had stamina.
Each little step you take, the first time you don't use those electric carts with the seats, you are learning how to walk again, a little less oxygen every few months, a short walk in a store with a cart to lean on, even taking time to plant a few flowers, each step, makes all the difference in the world.
L to R: Dale's son Chris, Dale and her son Sean across from Big Ben
In May of 2010, an extraordinary event took place for me, I took my sons, Sean and Chris to Edinburgh, Scotland. That promise my Dad had me make, came true. It seemed at the time, that it must just be a fairy tale. Yet here we were. Then, since we were there anyway, we went to Paris and London. We spent 15 days in Europe. We carried all the medications, pills, etc everywhere. Not once did we have any issues with our travel, pump and all. My older son Brian, his wife and my grandson met us in London. Never in my wildest dreams did I think this could happen. I really thought my days for dreams were done.
If you are reading this, and you have PH, you are among the strongest people in the world. You will have setbacks – like my three other "long" visits to the ICU. But each day, you have it in you to be stronger. Not everyone around you, not even your family, may understand. Unless their bodies have gone through a "terminal" disease, they may never really know what you are going though. But you are great. You have so much power in you to complete anything your heart can imagine.
I mentioned I'm writing a book. I've also just begun a blog. I think it may be a good venting space, a safe place to share unanimously, what is happening to your mind, your body, our struggles and questions about our futures. It's at www.sistersofanothermother.com. I'm doing this to help me talk through issues, but I'd be honored if you'd share your thoughts too. Your stories will help others find their courage. Your thoughts will make others strong. God Bless.