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Nella Coiro

Daily Life on Dialysis - Lessons Learned

Throughout this past week, and especially today, I have been thinking about what it means to live with chronic kidney disease, and the stamina and patience that this requires. Therefore, this is the topic of my blog today. 

Every morning I must go through several rituals before I can actually begin my day. Since I’m on peritoneal dialysis and use a cycler, I do the following: 

1. Set up my supplies and solution.
2. Put on a mask.
3. Wash my hands for one minute with special soap.
4. Close the door.
5. Clean the transfer set for one minute.
6. Detach catheter from machine.
7. Put a new cap on the transfer set.
8. Write down data from the machine.
9. Go through steps to close machine.
10. Discard solutions and other supplies.
11. Weigh myself and log that data in a book.
12. Take my blood pressure and log that too.
13. Take medication.
14. prepare materials to clean the exit site. Bandages, gauze, dilution.
15. Wash my hands again.
16. Remove bandage,
17. Take a shower.
18. Clean exit site and put on new bandage.
19. Get dressed.
20. Brush my teeth.
21. And now I can begin my day.

Then, some time during the day, I have this ritual:
1. Gather my materials.
2. Wash my hands for one minute.
3. Open solution bags and begin set up.
4. Wash hands again.
5. Put on mask.
6. Complete the set-up.

Then, at bedtime...
1. Set up supplies.
2. Put on mask.
3. Wash hands one minute. (I must have the cleanest hand in my town!)
4. Hook myself up to the machine.
5. Then I can go to sleep.

In addition, once a month I must also do an inventory and order my supplies.

Whew!

It’s tiring enough to write this down, so you can imagine how it feels to actually carry out these steps? EVERY SINGLE DAY? And it isn’t a choice. If I don’t do all of these tasks, I will not live for very long. It’s as simple as that. Eventually I’m hoping to get a transplant.(The waiting list is about four years.) So, I also have the anxiety of surgery hovering over my head every day. Being kept on a transplant list also requires some rituals, but I won’t bore you with those details.

I see myself as a warrior, and I am not alone. Millions of people go through these rituals and anxiety every day, and they are also warriors. They all have my respect. It’s a rough road. But, I’ve lived long enough to realize that everyone has a story, and no one is completely immune from suffering. And, as the slogan says, “It can always be worse.” 

Now -  the plus side, LOL. Haha, I bet you didn’t see a silver lining in this cloud! Here are the benefits. As weird as this sounds, I don’t believe that I would have experienced these “benefits” if I wasn’t in this situation.

•    Physically, I feel better than I did prior to the dialysis, and I’m grateful for this. In general, I have more gratitude in all areas of my life.

•    I’ve learned about more about life in this past year, than in all of the previous decades I have lived. Admittedly, I am still “a work in progress.” Most of us learn in increments, and the greatest lessons are usually learned through experiences and blunders.

•    I use time more wisely, and I am more motivated and purpose-driven than ever before.  A serious illness forces us to face our mortality. We become acutely aware that we have “an expiration date”, and this helps us to appreciate the concept of time. So, I don’t procrastinate anymore. 

•    My spirituality helps tremendously. I’m not talking about a specific religion and man-made rules... it’s much bigger and more profound than that. I recognize and feel the presence of a Higher Power in my life, and I believe that my relationship with the “God of my understanding” is giving me the strength and stamina that I need to walk this new, challenging path.

•     If you are familiar with my writing, then you know that I’m a big fan of the 12 steps of recovery. I believe that every person can find value and wisdom in this philosophy. Many of those  tools are helping me in this journey. Living one day at a time is precious and healing. Sometimes it’s difficult, but it can be done. We can do anything for one day. We will become overwhelmed if we say to ourselves “OMG, I have to do this the rest of my life!” There are days where we need to take life an hour at a time, or a minute at a time. That’s okay too. Whatever works.

When my doctor gave me the unpleasant news that I needed to be on dialysis, I was devastated and upset. However, he said four words that continue to bring me comfort: “We’re in this together.“ There is comfort in knowing that we have support. 

In closing, it seems that everything in life can be seen as either a disaster or a learning opportunity. How we frame the experience depends upon how we choose to perceive it. We have complete control over this. If we see it as a disaster, we will feel like helpless victims. If we try to find the learning opportunities, we will grow as people.

If you’re struggling with adversity or challenges, I hope that you can find your inner warrior, your spiritual connection and the stamina and patience you need. If I can do it, so can you!  

I’ve always lack patience. Now, life has presented me with an opportunity where I’m forced to develop patience. Life has a weird sense of humor!

 

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