So, as we all know, Halloween is approaching. Yay! No, seriously, Halloween is my absolute favorite holiday. Honey is going to be Rorschach and I am going to be a female version of The Comedian. We have a party Saturday so I’m hoping I will have all of mine ready by then. But that isn’t what this blog is about.
For those of you who read my first post, you know that I mentioned there are things, both good and bad, going on in my life right now and that this year has been a long journey that is no where near over. This blog is going to tell you a little about that.
My father is one of the most important people in my life. Both my parents are. My dad has been a Type 2 Diabetic since his late twenties. When I was younger, my parents owned a very well off business that allowed for all the doctor’s visits and medicines he needs. More recently, both my parents have been victims of the economic crash. Our house was foreclosed on, both my parents were laid off at the same time, for several months. They have since both found jobs. My dad has been at his for quite a while, and December of last year, my mom finally convinced him to opt in to his company insurance. His health had been declining and she knew he needed to see a doctor.
This is nothing less than a miracle to me and couldn’t have come at a better time. His policy went effective January 1st. He went to the emergency room barely a week after at about three in the morning. I remember because my mom woke me up, tears in her eyes, so upset she was barely able to breath. She told me she was taking dad to the E.R. because he was having problems walking and breathing. He was in there for almost a week. They ran test after test. Ekgs, x-rays, CAT scans, MRI’s. You name it, they probably did it.
It was determined that he had a fluid build up that was causing almost every part of his body to swell, from his feet all the way up to his chest. He had fluid around his heart and lungs, and some in his lungs. The thing that worried the doctors is that they weren’t sure what was causing the fluid to build. They put him on a medicine called Lasik that helps keep the fluid down, but caused him to have to pee “every 5 minutes” according to my dad. They finally sent him home after they got the swelling down.
Unfortunately, this wasn’t the end. They gave him some meds, but within the next week and a half, he was back in the ER again, The fluid had built back up. Let me say that it basically made his ankles swell so bad that he walked with a hitch in his giddy-up because he physically could not bend his ankles. It was even difficult for him to bend his knees. Sleeping just wasn’t happening because whenever he laid down, the fluid in and around his lungs put pressure on his breathing and made him feel like he was drowning.
He was in the hospital for about another week, and we haven’t even made it out of January. While he was in this time, one of the doctors formed an idea. I am not joking when I say they literally had a team of doctors trying to figure out the problem. They called him their “mystery” patient. Which didn’t really give us peace of mind. But, one of the doctors finally decided that the only thing he could think of would be the kidneys. He wanted to do a biopsy. After mulling it around a little, and learning that a biopsy now doesn’t mean going under the knife, my dad agreed.
Let me explain how they did his kidney biopsy. They basically numb you around one or both of your kidneys with a local anesthetic. Then they take a really long needle with a hole in the side, go in to your kidney, and use a special part of the needle that causes a piece to of your kidney to be cut off and stay in the hole in the needle. Then they pull it out and send it off for a biopsy.
The doc wanted to send it to South Carolina (to a medical lab) because even though it would take longer, he trusted their results more than having it sent to Atlanta. It was several weeks before we heard back, and when we did, the news was not good.
The news was that my dad is a victim Chronic Kidney Disease.
After that news, it has been a whirlwind of learning and testing. Of course, as soon as I heard, I jumped on the internet and immediately turned my brain into a sponge, soaking up anything and everything I could find about Kidney disease, kidney failure, dialysis, and anything even remotely related to it.
There are five stages of Kidney disease, and the stage you are in depends on how much your kidneys are filtering. My dad was determined to be between stages two and three, which basically means they were filtering somewhere around the 60% mark. We were told that with a change in diet and proper medicine, that the process of failure may be slowed.
We immediately made changes to our diet (as a family) and eating habits. We starting trying to help him exercise as much as we could. They changed his insulin, they added blood pressure medicine, gave him a prescription for Lasik to keep the fluid down, and a handful of more prescriptions for various things. They also gave him Lyrica. Now, I’m sure you’ve seen the commercials about how Lyrica is a drug to help calm pain from overactive nerves in diabetics. My dad was in a bad car wreck years ago that crushed the bones in his right leg. He has a steel rod from his knee to his ankle, so that leg has been the worst with all the swelling and causing him constant pain.
I am here to tell you that the Lasic and Lyrica have been wonder drugs for my father. The Lyrica started relieving the pain almost immediately. The Lasic keeps the fluid down. However, both are very expensive, even with insurance. And with all the bills and my parents both working for little over minimum wage, sometimes he tries to stretch them out and go without for a day or two to make the prescriptions last longer. Such is the way in a lower class family… If you didn’t think so, I’m here to tell you different.
In July, he went back for another major test. And the panic set it. His kidney failure is now marked around the 3 to 4 level, which means about a 30% function. Level 4 is anywhere from 15-29% and is usually where they start Dialysis. That brought a sense of fear and tension into our house. That is a word we had hoped to avoid hearing for at least another year. But alas, it was not meant to be.
Along with this, I have learned a lot about Dialysis, how your kidneys function, the difference between peritoneal dialysis and hemodialysis, home dialysis vs clinical dialysis, and more. There was a sense of fear in our house because we had a period where we were not sure that my dad would accept dialysis as an option. I mean, it’s not like we could force him. They also had some friends on dialysis a long time ago, and were worried that he would lose the rest of what little kidney function he did have if he went on dialysis. But it’s a lot different now, and dialysis works with the kidneys now, rather than instead of them. And after talking to some people at the dialysis center, he learned that the people on dialysis feel ten times better than they did before dialysis because it gets their body back close to normal. So he is much more comfortable with his decision to go on dialysis now.
And we are grateful for that. Goodness knows my mom is already taking it hard. I can tell she doesn’t know how to handle all of this. Now a days, if she has an off day and dad is working, she goes to see my brother to get out of town and away from everything. She unintentionally leans on me a little much to do things like supper and such, but I do it anyways because they are my parents and they need me.
Anyways, my dad decided on Peritoneal Dialysis. That is, home dialysis. They will go in and insert a catheter into the peritoneal cavity (abdomen), it will have to heal for 6 weeks, and then he can start dialysis. There are two types of peritoneal. One that requires changing the bag every 4 hours throughout the day, and one that is done by machine for 8 hours, at night. He chose the nightly one. And his surgery is scheduled for November 1st.
Now it is a whirlwind of sanitizing their bedroom, stocking up on antibacterial hand soap, germ-x, getting everything cleaned and organized to make a place for his supplies, and so on. Even though it is an outpatient surgery, I worry for him. And I hope that he has not been given false hope about feeling way better after he starts dialysis.
He is my rock. I am not a daddy’s girl, but I have always been my father’s daughter. He has always been the strong one in my life, and to see him weak and not able to do the things he used to breaks my heart more than anyone can imagine. He can no longer ride his motorcycle, something that brings him as much joy as a kid at Christmas. He limps across the porch and down the stairs to go to work at a job where he stands on his feet all day because he refuses to quit and be one of those “lazy bums on welfare”. He has good days and bad days. And we try not to notice when the good ones are far between.
And the scariest part of all this to me is that if my mom had not convinced him to get insurance, he would not have went to the hospital the first time. He would have laid in bed and more than likely died from the fluid in his lungs. And that thought terrifies me.