How long can you go without dialysis?

It's been a week. I thought instead of dumping this all on facebook or contacting people individually I would catch you up via blog post.

If you live in Texas or have heard of Texas, you know what happened and is still happening. Last week, the forecast was predicting a massive snowfall with record low temperatures for Sunday night/Monday morning. But the ice actually started falling the previous Thursday. That made getting to dialysis a little treacherous but I just drove slowly and made it there fine. 

Sunday evening I got a call from my clinic saying they would be closed on Monday. Then it started to snow. And snow. At 2am the power went off. The smoke alarm started beeping and driving Scout mad. We made an attempt to go back to sleep.

The house was freezing when we woke up. Ryan and I fished out our almost never used long johns and dressed in many layers. I was thankful we possess a plethora of blankets. We spent the day reading comics and I attempted unsuccessfully to work on a thousand piece puzzle. Our stove is gas so we were able to light the burners with matches and cook food for dinner - early before the sun went down.

At 6:30 we retired to the bedroom with Scout and her dog bed. We shut the doors and stuffed towels underneath to block the air. I believe there were 6 blankets on the people bed. We spent the next four hours just talking and I am so thankful that Ryan and I don't really ever run out of conversation.

The next morning was even colder as it had dropped to 7 degrees overnight. The morning was spent much the same way as Monday morning. In fact, I was puzzling on my puzzle at 11am when I glanced up at a beep and noticed the lamp next to Ryan had switched on. I gave a yelp of cheer and then we were scrambling to charge our phones and check on the house.

I need to take a moment to praise Ryan for being great in a crisis. He's always one step ahead of the game. He picked up our grocery order the previous Thursday, which was smart because shelves were being cleared that weekend. He also made sure all of the faucets were dripping and the outside faucets had their covers on. When we got power back he realized the hot water lines in the master bath had frozen and spent roughly an hour warming them with my hair dryers. And it worked! Also he took advantage of our precarious power situation and lit the gas fireplace in the living room.

My first thought was: need hot shower now.

I cranked the hot water all the way up and defrosted myself. I am so helpful.

At 6:00 I decided to heat the oven and throw one of the frozen pizzas in there. At 6:20 the power went out again. The pizza was defrosted enough to be edible, but we were looking at another evening in the dark. Luckily the fireplace produces quite a bit of heat, so we spent the evening warming ourselves in front of the flames.

Ryan slept downstairs on the couch to keep an eye on the gas fireplace. The next day the power came back on at 3:00pm and has been on ever since.

Meanwhile, our water pressure had been decreasing steadily. Some of our neighbors had already lost water completely. On Wednesday the city issued a boil water notice.

The bad weather kept coming. What was supposed to be snowfall on Monday on top of already icy roads continued as the freezing temperatures kept travelling dangerous. 

I had been keeping in touch with Satellite Dialysis via texting one of our techs I've known for years and calling the company 888 number. First they asked me if I thought I could wait until Wednesday for treatment. Since it didn't look like I had a choice, I said sure why not. Tuesday I texted my tech again and she asked if I could make it until Friday so they could take care of critical patients if they opened as early as possible on Thursday.

My first instinct was HELL NO. It had already been four days and this was asking for three more days. By the next morning I realized I was doing pretty well on my fluids and I wanted the other patients who were not great at controlling their intake to be able to get taken care of. I texted my tech and said Friday would be ok.

Starting Wednesday I started feeling a fullness in my stomach I assumed was fluid, but I wasn't that much over my dry weight. It turns out filtering toxins from your blood is very important. 

Thursday I had a sneaking suspicion my clinic had not opened so I called directly. The hospital down the street had started moving patients and sending some home because they had lost water and were struggling with power. There was no answer when I called. I texted my tech knowing full well I was taking advantage of her giving me her cell number, which they were not supposed to do. She confirmed that they were not open, that she didn't know when they would open and advised I call the 888 number again.

The woman I spoke with could not have seemed less interested. It was as if she were reading from a script and made note of the fact that she lived in California so it's not like she had control of the situation. My clinic would *maybe* open this weekend. Goodbye!

At this point I lost it. The stress of the previous week combined with my rapidly declining health sent me into a panic and I just started bawling. Ryan let me get it all out. Though it was still freezing outside I needed some air so I went on the front porch to gulp some oxygen. Next, still wrapped in my blanket I sat on the floor in front of the back window to sniffle and look at the snow and ice covered trees. 

Ryan suggested I text my tech again. I did, and explained exactly how I was feeling and what they had told me. She said to call them back and stress that I could not breathe. There were a handful of clinics open the next day that I could possibly get in to.

The next woman I spoke with was a complete 180 from the first lady. I'm sure it helped that I was still teary and she could tell I was distressed, but she took me seriously and said she was on it. Within 15 minutes I got a call from the head honcho of Satellite in Austin who I knew when she was the head of our clinic. She took note of my condition and said I would be going to the front of the line since I was having difficulty breathing and it would have been a week since my last treatment. They were going to try to get me into Kyle or a clinic up north by the Domain or Round Rock. At this point, despite the weather, I would drive wherever they wanted me to go.

I went to bed curled up face down on my knees as it was the only way I was even remotely comfortable. At 2am, still not asleep, my cell phone rang. It was Satellite. They asked me if I could go to Kyle at 7am and knowing I would not be getting any sleep until I got treatment I jumped at the appointment time. Then she suddenly said, "oh, I just got an email that south I35 is open today. Could you be there at 6:30?"

Could I? South 35 was closer to me with no traffic than my own clinic. I was so relieved I went downstairs to update poor sleeping Ryan on the situation. I went back to bed, set my alarm, and flopped around whimpering in discomfort.

I'm pretty good at driving in terrible weather, but it's still nerve wracking. I left with plenty of time on the clock and made it to the clinic at 6am. There were 3 other cars in the lot idling and the door was locked. At 6:15 I reached for my phone to call them when it rang. 

It was a tech from the clinic up near the Domain. He said there had been a miscommunication and I was supposed to be at his clinic, who had chairs available whenever you showed up this early in the morning. The Domain was 16 miles from my current location, up I35 and 183. I35 is so well traveled ice was not an issue, but 183 is basically one long bridge and was really dangerous. With so few cars on the road at that hour I was able to drive super slow and finally made it.

Patients were only getting 2 hour treatments, which was not a huge deal for me since I do a short runtime of 2 and a half hours normally. I also couldn't run as fast as usual because they only had 15 gauge needles when I use 14s at my home clinic. A stroke of luck, however, since staff was being dispersed to all open clinics, a nurse from my facility that I've known for years was there and volunteered to stick me.

I finished treatment, feeling the fullness in my stomach gone, but replaced by a migraine I had self-inflicted by pulling too much fluid. Still felt better than the previous night. Google Maps routed me home via Mopac,'d think there was no ice on the road the way people were flying past me. I'm really relieved and shocked I didn't see anyone flip over.

I was met in the garage by Ryan, who was carrying a large tupperware container to go collect snow. We had finally lost water. As I ate breakfast Ryan had switched to the cooler and was lugging volumes of snow upstairs to the guest bathroom so we could flush toilets. What a mess, and we still don't know when we're getting water back or when my next treatment will be.

Though I can breathe much easier today, this week destroyed me. I never want to go that long without dialysis again and will fight harder to get a spot next time. I'll be dealing with the repercussions of this past week for a while. Not only am I exhausted, I just don't feel all that great. The panic of not getting treatment is gone, but I've felt flattened today. I even had a low grade temperature for a while this afternoon.

This is by no means over, but I wanted to get this experience written down, not only for myself but for the many people who have been asking about me. I appreciate the concern and hope my honesty did not scar you. Thanks for the support everyone!

The elusive dialysis machine


J.S. said…
I just read this. That whole thing sounds terrifying! Glad that things eventually got better (and I know you’ve have vaccine reactions since this time!). Ugh! You need a break! Hope to actually see you guys soon!

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