My Bleeding Ink

Being born with Spina Bifida, Chiari II, hydrocephalus, and having all the secondary and tertiary effects from that, hospitals have become second nature in my 47 years of life. Hospitals. Surgeries. ERs.

Second nature.

Being part of the first generation of people with SB to live into our 40s and 50s and 60s in large numbers comes with things doctors can’t even guess at because, again, not a large enough population to study until now. But hospitals are sorta my jam.

*Being the patient* has become second nature, that is. Being the one that has to make sure to take all the pills at all the proper times. Do all the things at home for my neurogenic bowel and bladder. (Maybe one day I’ll write about how I have to pay to pee. Oh you’re intrigued? Subscribe to my blog and then stay tuned. 😊) Make the doctors appointments. Advocate for myself. Second nature. And I’m good at advocating for myself.

I’m really good at it. Thanks to my mom who would tell me as far back as I can remember, “Y dile que te duele mucho.” And tell them that it hurts a lot. 40 years later we still joke about that. We still use that phrase when either one of us are going to the doctor for any reason, big or small. Y dile que te duele mucho. And tell them that it hurts a lot. That’s where the advocacy started. The doctor would ask my mom questions and she would say, “Ask him, he’ll tell you how he feels.”

So everything that comes with chronic illness, I’m used to.

Used to it happening to me that is.

Then my wife got sick. Really sick. At the end of 2015/beginning of 2016. Diagnosed diabetic, kidney issues that caused edema all over her body as well as in her organs. Her lungs filled with fluid, her heart was twice its size. Some other stuff I won’t get into here. But she was in the ICU for 10 days.

And I wasn’t used to that. It was terrifying. Being on the other side of the bed was terrifying. Advocating for her, fighting for her, making sure she was well taken care of and got the best treatments available to her. Then coming home and doing the things we needed to do, setting up the concentrator of oxygen, making sure she always had a spare oxygen tank for going out. It was my turn to make sure she took all the pills. It was new and scary, but it was ok. “In sickness and in health.” Terrifying, but this woman is my favorite person in world. And that’s what you do, and that’s what I did. I needed to take care of her, I wanted to take care of her.

Eventually everything got better. Her diabetes was under control, all the edema went away, her heart went from twice it’s size to looking, as the cardiologist put it, “just like anybody else with high blood pressure.” Which is to say it looked a little thick. It looked like most people’s hearts in this country of expensive healthy food and not enough money to cook healthy meals daily.

Life went on.

Then the pandemic hit. And her being diabetic, and me having my issues, meant we had to take extra care of ourselves. We did the masking, we did the social isolation. And when vaccines came along, we did the vaccines. And the boosters. We managed to escape CoVid for 33 months. Almost 3 years.

But then November 2022 happened. And it wasn’t even anything exciting. Can’t even say that we went to a party with a whole bunch of people. Not that anyone in that situation “deserves” Covid. I just mean this wasn’t even crowded or fun. Wife likely got CoVid by being a career nanny and taking care of a little boy whose parents took him to swimming class and somebody at swimming class had CoVid and gave it to the little boy who then gave it to my wife. A week or so later I came down with symptoms.

And it was rough. It sucked. It wasn’t “just a cold.” At least not for me and definitely not for my wife. For me the biggest issue was a cough that kept going and going. I felt lousy for a couple days, I had a fever for a day, and then I felt mostly fine. (credit to the vaccines!) Except for this dry cough that kept going and going. I still don’t know if I have any permanent lung damage. I wouldn’t be surprised if I did.

My wife, however, never got better. She stayed exhausted. Just tired all the time. So drained. We just figured, and her doctor agreed, “These things take time.” “As a diabetic, these things take time.” She ran a few tests, found some anemia, recommended iron pills, sent her home.

So on she went. But finally in early 2023 she went to the emergency because she couldn’t handle the exhaustion anymore, the lack of appetite, and there she was told: Severe anemia. White blood cell count high. And then… renal failure. My wife’s kidneys no longer did their job. She was essentially being poisoned by all the toxins her kidneys no longer filtered.

Our whole world changed. Still don’t know what caused what. I don’t know if she was having issues she didn’t understand or know about for months, or if she was ok pre-CoVid, only to have CoVid mess up her kidneys and then leave her body. Kidney disease is known as a “silent killer” because you don’t often know anything is wrong until they’re already in pretty bad shape. Don’t know what effect her diabetes had either. The timing sure implies certain things to me, but I supposed it doesn’t matter anymore.

(WARNING: This post is not about CoVid specifically, or vaccine efficacy or any of that. We believe that without the vaccines she would’ve simply died in the week she had CoVid, and any anti-science conspiracy theory comments will be deleted!)

Only thing that matters is that her kidneys are shot. She’s on dialysis and will be on dialysis for the rest of her life. 3 times a week for 4 hours. Until she hopefully gets a transplant either through a living donor or through the much slower (average 6 years) process of getting a kidney through a deceased donor.

She takes what I’m sure feels like a million pills 3 times a day. She is on two different kinds of insulin. One is 5 units every day regardless. The other one happens after checking her blood sugar, but before meals, 3 times a day, and then again before bed. If you’ve never seen someone with ridiculously low blood sugar, It’s terrifying! Cold sweats, disorientation, making no sense. It’s scary.

She has to watch her diet even more than before. She was already really aware of certain foods because of diabetes but now she’s also following the “renal diet” which means she has to be very aware of the amount of salt, phosphorous and potassium in her foods. All of these are ingredients where normal kidneys filter out the excess when you pee. Except when your kidneys don’t work and they can’t filter the excess! And they are also ingredients that happen to be in EVERYTHING!!!

She’s also on 3 liters of oxygen, which will hopefully get better after they fix her paralyzed left diaphragm that she was likely born with, which we also didn’t know about until 2016. On the plus side, learning this did help explain her lifetime of running out of breath so quickly. Her lifetime of being exhausted when she walked too far too fast.

We interrupt my story with a quick rudimentary biology lesson: Your diaphragm helps you breathe by helping your lung expand. It gets smaller as your lung gets bigger when you take a breath in. And then your diaphragm expands when you breath out as it pushes on your lung and helps it contract. Well, her left diaphragm is stuck in the “on” position, fully expanded, not letting her left lung fully expand when she breathes in. Tests showed she breathes at 52% capacity as the rest of us with fully functioning lungs.We now return you to me venting…..

And the memory loss!!! That’s been happening for the past couple months. It’s so bad! She’s due to see a neurologist soon, but for now, it’s bad. She’ll forget conversations she’s had, she’ll forget my mom came to visit 5 minutes after my mom left! She’ll forget whether she called someone or not. Recently we spent a half hour dealing with car insurance stuff after a severe hailstorm and, after I stopped at the post office, I came back out to find her trying to contact the insurance people “to start dealing with the hail damage”!! That’s been the hardest thing, for very different reasons, for both of us lately. She can’t keep track of everything that’s happening in this new life of hers, so I keep track of her kidney stuff and my SB stuff while she cries and feels like she’s losing her mind!

And we don’t know at this point if this is something that’s going to get better with regular dialysis, or if it’s part of some long-CoVid thing we don’t yet know about. Or…god…if it’s a separate neurological issue on top of everything else. 😐😳

And it’s hard, guys. End Stage Kidney Disease is just hard. Going through it is hard. I can’t imagine what she’s going through in her mind. I do know this once hilarious, vibrant, sharp-as-a-tack, can-keep-track-of-anything woman who was spontaneous and silly, and sang and danced around the kitchen…. I know she cries more often than not. I know she’s depressed more often than not. I know she wonders if she’s losing her mind when she can’t remember something that happened just that morning. I know her mood just sinks some days when she’s just so tired of…..everything.

And as the caretaker, I have the easy part it’s a different kind of stress. All I gotta do, mostly because of her memory issues, is keep track of her meds, check her blood sugar, administer insulin, drive her everywhere, make all her appointments then go to all her appointments with her and make sure I’m taking in all the information, wear a mask and gown at dialysis because I stay for the first part in case anybody has anything important to say (which she won’t remember). And fight for her. Advocate for her. “Tell them that it hurts a lot” when she can’t.

And that reminds me…shout out to my mom right now. Fighting for me when I couldn’t. Staying with me during all my surgeries. All my appointment when I was younger. Still showing up when shit really hits the fan medically for me, like when I slip and break my knee. Or when I slip and break vertebrae in my back. (I slip a lot the older I get. 🤷‍♂️) Shout out to my dad, letting me cry in his arms when, as a 30+ year old man, I needed 2 shunt revisions in under 6 weeks, and to my mom being strong for me when I couldn’t. Leaving the hospital room to go cry, and coming back with more strength to give.

And I’d be remiss if I didn’t shout out my ex-wife who was blessed with good health and so I had no experience being on “the other side of the bed” with her, but she certainly did with me.

I didn’t. But boy I do have experience now……

And this is hard guys. Right now my wife is asleep after a visit to the ER because of some pain we couldn’t get a handle on, and I’m sitting here on my phone at the kitchen table, tiny screen, and just felt inspired to get some stuff out of my head.

I dunno. I don’t know what will happen tomorrow. But I adore my wife. She’s my best friend and my favorite person in the world. I love everything she is.

No, I’m never leaving, never abandoning her, staying right here. “In sickness and in health.” ….. I just needed to get some stuff out. Thank you for letting me vent.

If you’d like to help us with medical bills or paying for things not covered by insurance, in short, pay for this new way of life, feel free to click on this GoFundMe link. Every dime, it all goes and has been going, to her medical expenses.

If you’re interested in being a Living Kidney Donor for my wife, feel free to contact me. The most important thing to know if you’re considering this is that the screening process is intense and the hospitals will absolutely NOT do it if they think there is even a small chance you will one day, given your family history or any medical issue, need 2 kidneys. Your safety is a top priority!