Sick People
When people are experiencing a medical emergency, you can’t always make them change their course of treatment, even if you think they might otherwise die. This is what I learned the hard way this fall when my mother suddenly became ill.
My mom is one of the people defining the new sixty. She is fit, active, energetic and hot. When she comes from Detroit to visit me in NYC, men turn their heads on the street to get a second look at her petite figure, beautiful white hair and mile-wide smile.
You would never guess that she had breast cancer five years ago, and you would never believe that she nearly died from congestive heard failure last fall.
But she did. Over the course of several weeks in August, her lungs began to fill up with fluid and she nearly died in the emergency room on Labor Day.
I am the older sibling and the only member of the family who lives far away. So when I come home for a visit, I can be a little disruptive—sometimes, I hope, to others' benefit. Other times I am just a pain in the ass.
When I came home during the heart failure, I did not like what I saw. My mother was in a field hospital best suited for mending broken arms and comforting poor old people in their last moments, not a place to perform crack, life-saving techniques on one of the best elementary school teachers in southeastern Michigan. It was not a place with a big cardio unit. They did not have the staff or infrastructure to, say, perform an emergency surgery in the case of a botched heart catheterization.
And that was my biggest fear. Once the team had stabilized her, I wanted her whisked out of there and taken to the University of Michigan or some other big, well-funded, squeaky-clean place for catheterization and anything else she might need.
But my mother wanted to stay the course. And you don’t mess with my mother.
She spent about seven days in the hospital. The catheterization went well, but determined that she had dilated cardiomyopathy, a form of heart enlargement whose cause is often unknown, but is sometimes the result of a viral infection.
The doctors told her that she would probably return to a near-normal life, but she might have to make some adjustments. Flash forward six months and my mother’s heart has returned to a normal size and shape. Her ejection fraction, for those of you who have learned the significance of these numbers the hard way, was a 17 when she went into the hospital (50 to 70 is normal, 20 to 50 is low, and 17 is, well, dead). Her cardiologist said he hoped to get her up to 35 with meds. It is now a 52.
Shortly after I returned from my last “sick-visit,” I became pregnant. Over several months and as many procedures I went from thinking that I was having twins, to thinking that I was having sick twins, to finally knowing that what looked like two fetal sacks was really one long blighted ovum. So many women have been through this and have done a better job of writing about the strange and lonely sadness that comes with miscarriages.
What struck me was the number of well-meaning friends and family members who wanted me to switch doctors, or to question procedures. I could not do it.
When you are sick and in trauma, you get on a horse you need to stay on that horse. You can’t ask people to change doctors or hospitals and expect them to consider the options as you see them. They are “in it” and for whatever reason (maybe because healing is as much mental as it is physical) they desperately need to stay where they are.
As much as I wanted to rip my mother out of this third-tier shitberg of a hospital, she needed to be there. And she was right.
I learned this one the hard way.
Comments
It is really hard, when you are sick, to think you are not on the right path. Its scary. Once you've been in the hospital for a few days it feels like home and the idea that the people caring for you are not the most qualified is frightening.
I'm so sorry to hear about you and your mom's health, but happy to hear everyone is recovering. take it easy.
Posted by: jen | January 24, 2007 08:50 PM
I'm so sorry for your loss as well as your near loss. I pray that you find peace and healing in this new year. It's good to see that you're able to write about it. I hope it helps in the healing process.
Posted by: Ara | January 25, 2007 10:34 AM
My mum (in her early 50s) recently fell foul of Viral Encephalitis. She was admitted to the Accident and Emergency department of the local hospital after a seizure and within hours was in Intensive Care. After a week or two in ICU at this hospital, she was transferred to ICU at the National Hospital For Neurology & Neurosurgery in London for a ECG scan that could not be performed at the local hospital. The doctors there decided they had to keep her at the NHNN because of her condition. After 5 looong weeks of worsening health, she eventually came round and made a very speedy recovery.
In her case, I think it was critical that she moved to the National. The staff there were much better equipped to deal with her relatively rare condition. I sympathise totally with you Carrie. Even though we all know that losing loved ones is a part of life, it is still the most painful experience. There were many moments when we felt all hope had disappeared (she was very, very ill) and in reality she has made "a miraculous recovery" (in the words of her doctors), coming out of it with no real loss of brain function.
If I am honest, I am still suffering the consequences of a summer lost to the stress of hospital visits and despair of brain disease, so I can only wonder how it felt to have two loved ones ill as well as your own personal crisis. I can only say that I am glad to hear that your parents are well.
Thanks for writing this blog entry (I am a subscriber to your husband's blog and found it through that) -- it has made me reflect on the events of the past year.
Posted by: Bruce Boughton | January 25, 2007 11:21 AM
This has been a topic that's come up a few times over the past few years for me, and I've found myself on both sides just as you have.
My great aunt, whom I'm very close with, has had 3 congestive heart failures in 3 months. There are a few procedures that could help her, but she's decided that she would prefer to spend as much time at home as possible and be comfortable. In a way, I want to drive over to her house and bring her to the doctor and somehow make her get better.
What makes this hardest for me, is my recent medical history. For years, I've had digestive problems and my physician diagnosed it as IBS. I recently made a change in physicians a few times because I felt it might be more. 3 physicians in a row dismissed it as hypchondria, but my current physician did some investigation and discovered that I had a rare, but potentially fatal liver problem.
Now that I'm feeling better and improving, I can't help but wonder if a different doctor could make some similar revalation about my aunt. But like you I've finally realized that she's chosen her own path and the best thing I can do for her is just be there whenever she needs me.
I'm happy to know that you and your mom are healthy now and it's good to know that I'm not the only one who feels this way sometimes.
Posted by: Ian | January 25, 2007 12:59 PM
I am sorry to hear about your experiences, it makes us cherish what we have at this very moment... and makes us realize how many things can go wrong, and how few wonderful things may happen during our existence.
Above all, thank you giving us the change to read this. Thanks for sharing those hard moments.
Posted by: Mau | January 25, 2007 01:10 PM
Jeffrey may remember me from AEA Chicago (I mention this by way of introduction, since I don't think I've commented here before).
I just wanted to contribute my arms to the general group hug.
In our family, the losses have just kept piling up--several deaths, some serious illnesses, and an assault on one child--not exactly in parity with your own situation, but close enough to understand how hard these moments can be.
And, like others, I appreciate your insight into why changing solutions/environments mid-course might not work. Patience to stay the course can be harder than change--which is why patience is at times heroic.
Posted by: Lisa | January 25, 2007 02:53 PM
I read your experience and am so happy your mother is doing better. You very poignantly shared the reality of being caught between where the head and heart meet in deciding whether to keep your mother in a local hospital or transfer her.
I'm Chief Medical Officer of Revolutionhealth.com, Steve Case's new web company devoted to helping us all in our journeys through the health system. Our whole mission is to try to offer community, a helping hand, a healing voice in situations like this. Would love to invite you and your readers to check us out anytime, and take a look at my blog https://www.revolutionhealth.com/blogs/blogs/my_weblog. I'm exploring what wellness is, and trying to offer viewpoints on various areas of medicine - would love comments anytime.
Best regards, continued good health to your Mom.
Posted by: Dr. Jeff Gruen | January 25, 2007 03:43 PM
"one of the best elementary school teachers in southeastern Michigan"
Here in Michigan we need all the good educators we can get . Glad to hear your mom is doing well. Mothers and fathers do not wish to burden their older children no matter how old with their health or health care choices. My folks are in their 80s (live in Toledo) and I find things out after the fact. While it frustrates me I let them deal with how they want to. This make them feel empowered and still in control. I like to make them feel young.
As for your miscarrage I can relate. My wife debbie was 18 weeks along when our son Benjamin's heart stopped. I don't know how you felt or what you went through but for fathers it is a little different.
We are in charge of moving forward, of taking care of
and providing for the family. For Jeffrey there is an emptiness too we just get used to the idea of providing for more and it is taken away from us. Still we have to move forward for us it is our mandate. May the new year bring growth, peace, and prosperity to your home.
Posted by: Don Ulrich | January 25, 2007 04:34 PM
The inability of an injured human to make medical decisions which are both objective and feasible is a mystery. That is why we have families and friends to guide us.
I am sorry to hear of your and Jeffrey's loss, especially in light of the trauma you suffered around the time of his last book writing. But loss often makes what we already have a lot more meaningful.
Continued health to your mom.
Posted by: Brandon | February 1, 2007 12:34 PM