I don’t want to write this post. But if there is a question I have been asked more than, “How’s your wife, Hugh?” the last month or so, it has been, “How can we help?”
But I am assuming you know what I am talking about. Let me bring you up to date.
The Back Story
My wife Renee has a rare heart disease that runs in her family. She’s been on a pacemaker since she was 13. Two of her sisters have had heart transplants. Her mother died at age 45 of this disease. Her grandmother died at 27.
Most of the time, she’s fine, as long as she isn’t trying to majorly exert herself. Walking long distance is hard, as is stairs. But she could sit at the table with you, or next to you on the couch, and you wouldn’t know anything is wrong with her.
But lately, her health markers the cardiologists watch have been getting worse. And it has become more and more obvious that a heart transplant is in our future. And then we got the call that it was time to be evaluated for transplant.
We spent three days at Duke Hospital a few weeks ago, undergoing a battery of tests – physical, psychological, financial – to see if she was fit to be on the list. Honestly, the iffiest one was the financial qualification, as a heart transplant costs north of $750,000, and the Love Wins health insurance plan is pretty nonexistent. However, she’s on Medicare and Medicaid and together, that was enough to piece together a somewhat shaky financial plan for paying for all of this.
Two weeks ago, we received the call that we were approved for transplant – now she is officially on “the list”. This means lots of things for our family – making sure we always have a phone with us, no long-distance trips, and cleaning up healthcare messes now. They want you to have all your other health problems fixed before transplant, as surgery becomes a lot harder after transplant.
Last week, she had gallbladder surgery – which was supposed to be a simple in and out operation, but these days, nothing is easy. She spent 4 days in the hospital.
Now, on one hand, it wasn’t a big deal. She was in the hospital just 10 minutes or so away, not the huge hospital 45 minutes away in Durham. But for a few days there, it was pretty scary, and she was pretty drugged up, and I needed to be there to find out things.
So there were lots of meals in the hospital cafeteria. And as I dashed back and forth between work and home and the hospital, there were fast food meals wolfed down in the car. And of course your mind is never on anything other than her being in the hospital, so you let things slide, like getting the car inspected so you can get new tags, or putting that bill in the mail or returning those emails.
The yard is dead and shaggy. The plants all died from neglect in the vegetable garden. I spent the equivalent to a car payment on unexpected expenses in just 4 days.
We don’t have kids, so there is that in our favor. But that also means we don’t have the support network that accompanies kids, and our obligations – cats, chickens, gardens– are less able to tend for themselves.
In the middle of it all, it occurred to me – this is nothing compared to how it is going to be when we get the call.
At least two weeks in the hospital – in Durham, nearly an hour away. Daily commutes as I deal with the house and work back here. I am fortunate to have a lot of flexibility with my job, but that will still be there too. I can’t afford to leave work for a month or two, and work can’t afford my being completely gone.
We have to scrub the house down before she comes home. For at least a month after surgery, Renee will be unable to be alone. She will only be able to drink boiled water. Germs are the enemy, big time.
And then the trips back to Durham. Weekly checkups. Gas for those trips. Meals while we are there. Someone is going to have to buy those groceries, cut that grass, feed those chickens.
How you can help
Right now, we are doing ok. We took a financial hit last week, but we will survive it. The main thing last week did was show me just how shaky our situation really is.
That said, we are now on “the list”. In theory, we could get the call anytime, and then within a few hours, all of the drama starts. If last week taught me anything, it is that we are sooo not prepared.
When the call happens, we will be living at the hospital, for all intents and purposes, for a couple of weeks. Lots of meals in the cafeteria. Lots of coffee at the Starbucks in the lobby. Variety will come from the Subway sandwich shop in the building next door.
While we don’t “need” these things today, we don’t know when we will, so if we got any of them now, we would put them in the sock drawer for the inevitable call.
Gift cards are amazing, and don’t expire. Subway, Starbucks, McDonalds are all decent options, and easy to access for me while she is in the hospital. After transplant, Renee will be on a low sodium diet, so at that point, more sit-down restaurant choices would be better.
Gas, with nearly two hours on the road most days, is going to be a huge expense, so gift cards to gas stations would be amazing.
The healthy options at the hospital are the ones you bring with you. Luckily, there are grocery stores nearby – both Harris Teeter and Kroger have stores just up the road from the hospital, as well as near our home for after we get back home.
And while it feels indulgent to mention it, I predict reading dozens of books while sitting on my butt in the hospital room. Amazon gift cards would be nice, because of the Kindle app, so I don’t even have to leave the building to get a book. Also, pretty much anything we might need, we could probably buy it on Amazon.
And speaking of buying – let’s get really uncomfortable for a moment. Some of you have offered to send money. Don’t do that… yet. For one thing, large amounts of cash on hand could hurt us with Medicaid and damage our ability to keep coverage. One day we will need the cash. But not today.
But the biggest fear I have right now? Losing my income. Right now, my income from Love Wins is the shaky center that holds this whole thing together. And every summer, donations dry up. And every summer for the last 8 summers, I have been terrified that this is the summer we won’t make it, that the money will stop, that I will have to lay everyone off, that we will close the doors, that I will have to go to work at Home Depot (which, as I understand it, has a great benefit package). And every year, so far, we have barely scraped by.
So, if you really want to help us economically right now? Donate money to Love Wins. It will keep me employed, it will take huge amounts of stress off of me and, oh, by the way, we will do good things with it. I am serious. This is the number one thing you can do for me right now. You think I am stressing now? Wait till you see an unemployed Hugh.
As far as local support – we are working on meal trains and have a list of people who want to feed the chickens and cats and promise to take care of the tomatoes. We will firm that up more in the coming weeks – but if you want on that list and are local, send me an email (firstname.lastname@example.org) with the words “Support List” in the subject line. When we start that process, I will let you know what’s going on.
So, that is the big three right now – gift cards for gas, groceries and food; donate money to Love Wins to keep me employed and (financially) stress free; send us an email if you are local and want to be on the support team.
I appreciate all the offers of help – these are the things we need right now. As new things come up, I will post them. Thanks for your help – your love and prayers and kindness mean more than I can say.
Our mailing address is:
Hugh and Renee Hollowell
PO Box 26874
Raleigh, NC 27611