Editor’s note: This commentary is by Shelley Rinaldi, of Bakersfield, who is a member of Rights and Democracy.
[O]ne night in August 2001 I woke up in the middle of the night with severe heartburn. I got up, grabbed the Pepto Bismol and chugged a healthy dose down. Going back to bed was not an option as it would intensify my acid reflux. So I warmed up the heating pad and settled into my glider to try to soothe my pain.
This night would be different from the others though. I would not succeed in relieving my pain because my appendix was on the verge of bursting. After hours of waiting and hoping I finally woke my husband to take me to the ER.
The next day my appendix was removed and after a couple days I was ready to go home. The surgeon mentioned that my liver enzymes were oddly elevated and suggested I have them rechecked after a few weeks of healing. And what should have been the end of a short story became the beginning.
I followed the surgeon’s advice and went to my primary care physician to get my blood work rechecked. But the numbers were not any better than when I was in the hospital. And after several other tests were ordered and run, it was determined I had primary sclerosing cholangitis.
PSC is a liver condition that damages the liver slowly over time. Though it took 15 years, my liver was eventually damaged enough for me to be placed on “the list” for liver transplantation.
As you can imagine my story is long and detailed and has many twists and turns. But my reasons for wanting to share my story are pretty simple. My illness, my transplant surgery and my recovery did not just affect me. They affected my husband and our financial security as well.
Liver transplantation is a big surgery. There is a long process involved. And my husband went through every step of that process with me. When you are “healthy,” you can take certain things for granted. The ability to get in and out of bed. Taking a shower. Getting dressed. Walking upright. Reaching into the cabinet for a glass. Lifting and pouring a gallon of milk. But when you are not healthy, these things become impossible without the help of others. And you learn humility, acceptance and gratefulness of the people who are there, just to help you get through the day.
Although my recovery was remarkable and speedy (if you ask my medical team) it still took weeks. And during that time my husband did a major portion of my caregiving. And although the company he works for gave him the time off he needed to be with me, they did not pay him. We received absolutely no income from any source in all the time we had to take to replace my failed liver. We survived by withdrawing money from my husband’s retirement funds in order to pay our bills until he was able to return to work.
To be perfectly honest, this made me feel really devalued. As an American citizen, who has worked hard her entire life and is married to a man who has also worked hard his entire life, we deserved better. We will most likely be “catching up” financially for years to come to make up for the out-of-pocket expenses and the retirement savings we were forced to use because there was no income during our time in the hospital or post-hospital healing time.
As the person “responsible” for our financial hardship I feel guilty, frustrated angry, sad and disappointed that we don’t have any paid family leave to protect people from financial ruin because of an illness we can’t control. It is difficult enough to go through a major medical issue without having to deal with financial stress and all the emotions that go with it.
I hope that you never have to go through what we have been through. But I also hope you realize that my story could be your story someday. I certainly never thought, as a healthy young adult that I would someday face a diagnosis that would lead to a liver transplant. But I certainly will not be the last person or the last Vermonter to have to go through a major medical issue. I DO hope however that I am one of the last to go through it with NO financial support.
