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History of our dialysis journey.

So this is my first ever blog post, and I’m very excited to share the journey of my life with others.

My “grandmother/nana” is actually my fiances grandmother. I’ve only been around for 2 1/2 years now, so I’m still unsure of some of the history of her medical experiences. But I’ve been around since before her dialysis journey began.

I met my fiance at a bar, strange, I know, but we seemed to hit it off quite well. A month later, I moved in after meeting all of his family (except the ones in California). ¬†That was in October of 2014. In December, I found out his grandmother had to have an operation to put a fistula in her lower right arm. I agreed I would go to the hospital with my mother in law and her. January 6th was the operation date. January 5th she moved in with my fiance and I. Why did she move in? Because she’s a 69 year old woman who has a history of stupid decisions involving suicide attempts, and was annoyed that my mother in law kept bringing her back to life. With her living here, if she died peacefully in her sleep we wouldn’t be able to bring her back. And my mother in law was able to distance herself somewhat, in case the inevitable came sooner rather than later.

 

We took her in for her operation, a month later, she became really ill, and ended up in the hospital for a month and a half. It was literally a living hell, she remembered no one, and went crazy during her stay there. She fell and fractured ribs getting up to use the restroom chair. The only thing she remembers about that stay was her falling. She only remembers because they put alarms on the hospital bed, and they went off every time she moved.

The fistula from that operation ended up collapsing and becoming useless. So we had a chest catheter put in while we waited for another fistula operation. Her doctor started dialysis while she was in her long hospital stay. She absolutely hated it. It wasn’t so bad with a chest catheter, because she wasn’t being stuck with needles. She came home from her hospital stay, and I took the best possible care for her that I could. I still do.

 

After the dialysis started in the hospital, we had to continue it after. 3 days a week, at a dialysis center an hour away. Over the first several weeks we learned about the strict diet dialysis patients endure. And struggled to afford all of the changes that we had to make. They gave us a prescription that said we needed to get calcium something or other supplement. We took it to the pharmacist, he gave us Vitamin D with Calcium. We talked to our normal pharmacist days later, only to find out the other one could have killed her. She can’t take whatever was in the one the first man gave us. Needless to say, it was actually tums. She was told to take 3 with meals and 2 with snacks. This woman has no teeth, getting her to eat tums with every meal and snack was a hassle.

 

We went in for her next fistula operation, and the doctor drew labs. All of her vitamin levels, and other things were low, he took her off the strict diet. Yay! She could finally have her cake again. Along with a shot of course, for her diabetes. and Tums to bind the phosphorus.

 

This fistula worked for a few weeks before ultimately doing the same thing the first one did. Most likely because the pain killers after surgery caused her to feel like superwoman, lifting heavy objects and whatnot. That was a big no-no, and she did it after we went to bed so she wouldn’t get in trouble. *insert eye roll here* So we were in for another chest catheter and fistula surgery. Yay us. Not.

Her first few weeks at the dialysis center were hell. 15 gauge needles, straight in the arm into her fistula. She refused to go most days, because she would just sit in pain and cry. We then found out about a numbing cream. It actually worked. Put some along the space they were going to insert the needles and wrap with saran wrap to “activate” it. She was switched from Tums to a prescription “binder”.

Everything was going rather well for the next year. Besides the fact that it was difficult to get her to take the binders.

She also stopped having issues with her asthma, and came off quite a few medications. I think she was on about 18 when we started. She is now on a total of 10.

We decided we would look into home dialysis, as it would be easier because we wouldn’t have to spend a lot of money on gas, and lunch afterwards. Plus, mother in law and I got really bored walking around in circles, in the same stores, all the time. Her treatments lasted about 5 hours. We spoke with her doctor, and he got us set up for training. Training was 5 days a week for a month. That drive was 2 hours one way, sat there for about 6 hours, and then a 2 hour drive home. She was worn out more than we were. After training, the nurse came out for 2 treatments to make sure we were able to do everything properly in the home setting. The first night, my cat had kittens. June 6th, 2016. That’s the only reason I remember it so clearly. It’s now February of 2017 and we are still doing home dialysis 5 times a week for 2 1/2 hours each day.

 

I’ll be posting soon about the benefits of home dialysis over in center dialysis, and other experiences in our journey. I hope this will help at least one person out there. If you have any questions about dialysis, feel free to contact me.¬†

 

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