It can be said I’ve been through the wringer the last few months. No argument here. But nothing about the past five months had prepared me for what I faced the past few weeks. I am certain I hit rock bottom last week. Or at least I hope it was the very rock bottom. It’s possible the Universe has yet another joke to pull, but I hope not!
I put on another ten pounds of water weight the week between my last visit with my doctor and meeting with my nephrologist (kidney specialist) last Monday. TEN pounds. In one week! Literally nothing but my yoga pants fit me and my face was so swollen it was impeding my vision. I was a water balloon stretched to the limits and could barely get through the minimal motions of yoga the morning of my appointment. My yoga instructor who is also a good friend must have been inspired because that morning she said “if you can sit and breath, you are doing yoga” which my poor psyche took great comfort in. I couldn’t sleep because just having my legs touch each other was painful, all I wanted to do was sit on the couch – and eat of course since I’m an emotional eater – and I can say I now know what depression really feels like.
I walked into the nephrologists office hoping for a miracle and that somehow I would have relief that day. I went early to do paperwork, watched all the elderly patients walking in and out and wondered how I fit into this scene at all. When it was my turn I stepped on the scale, saw the HUGE new number, and then sat crying in the exam room waiting to meet my new doctor knowing it was probably not going to get fixed in a day with some magical new medication she could prescribe. The office was plastered with posters about advanced and chronic kidney diseases and all this treatment info. I’m certain it was meant to be helpful and informative but instead it was overwhelming.
When the doctor came in she asked a lot of questions and looked at all the labs and imaging I’ve had done but didn’t know what was causing this thing with my kidneys. It was ironic how many of the questions about when symptoms had started could only be answered by framing them in terms of my fitness. For example, I only noticed the swelling in my legs when I could no longer sit in child’s pose in yoga about a month ago. And my shortness of breath went away for a bit because I could run in January but soon came back and I haven’t been able to run since February. At one point she looked at me and said “so, you are healthy”. Um, yeah! Which is why this is so hard to deal with. She took a ton of blood for more testing and ordered a kidney biopsy so we will have some answers and know where to go for treatment. Best of all, she prescribed a new medication that I could start taking immediately to help with the water retention. And, she believes that whatever has caused my nephrotic syndrome is the cause of my blood clots in my lungs which means I’ve been dealing with this since sometime last fall and possibly even longer.
The relief of having at least one question answered was so great. Of course it doesn’t address the question of what’s going on with my kidneys but baby steps are okay for me here. The nephrotic syndrome, which causes the water retention, the blood clot and even the thyroid issues are all still symptoms of something else happening which is yet to be determined. Kind of like going deeper into the rabbit hole. The big bad things I used to fear – diabetes and heart disease – have been ruled out completely which makes me happy in some tiny way.
Speaking of relief… that new medication? It turns out she COULD give me a magical cure in the form of a pill that day! After one dose, I had dropped FIVE pounds the next morning. I have to monitor my blood pressure and my weight until I see her again because it might be too high or too low of a dose. So I know that I’m down almost twenty pounds of water weight just in the last week. I feel so much better it makes it seem like I’ve been cured. Of course there’s still the kidney biopsy looming next week – a four hour procedure under general anesthesia – but that will give us definitive answers so I’m looking at it as a positive thing. And trying not to freak out about the procedure itself of course.
I have even more restrictions on what I can eat – and drink now, too! No salty foods, and no adding salt at the table to anything. And, I can only drink a total of two quarts of fluids each day. That includes all fluids. Coffee, breakfast shake, water, everything! Both of these have to do with the water retention so I’m more than happy to oblige although I am constantly thirsty now and would KILL to be able to hydrate normally. There’s some more irony for me…. I’m a runner who can’t run OR hydrate anymore. I’ll be a hot mess and will probably have to start all over when I can run again. But, at least I didn’t die, right?
At one point in the deepest darkest week of hell I got drunk on a Tuesday night at a neighbor’s house. Not my finest hour but I was so beyond depressed that I didn’t know how else to cope besides getting to where I didn’t care for an hour or two. Of course I don’t have that luxury anymore because I’d have to drink zero all day just to be able to drink enough to get a buzz but it was sure fun to escape while it lasted. At one point I woke up and had one of those moments that you read about – for a moment I was happy and everything was okay and then it hit me like a ton of bricks that I have kidney disease and my world shifted. I always thought it was a metaphor but that’s exactly how it feels.
Luckily that deepest darkest week of hell is behind me and thanks to my better living through pharmaceuticals I feel like I’m slowly getting back to normal… again. Here’s hoping that the biopsy next week does yield answers so a treatment plan can begin and get me really back to normal soon. I miss running so much that I dream about it occasionally. And I haven’t given up hopes of being able to finish the half marathon I’m registered for in June, although I know it will be a lot of walking in between some running. Hubby and I looked across the kitchen at each other last night as we were both getting our maintenance medications out of our respective pill bottles and ruefully laughed. Both of us swore years ago that we were going to do everything possible to stay healthy so we didn’t end up being one of “those people” with chronic conditions that required constant medication. Sometimes the Universe has a really sick sense of humor…