The Negativity is Real

 We're in our last week of in-center training for home hemo-dialysis. This is very exciting for us as we travel a lot between two cities and keeping up with the demanding schedule has been quite a challenge. In the plus column, my husband is feeling better overall. He is no longer anemic. His BUN, creatinine, phosphorous and potassium are trending in the right direction. In the minus column, he is very tired after dialysis, craves salty snacks, and has to work hard not to overload on fluid.

Like a lot of other people, we went to the internet looking for both support and information. There are a lot of really great support groups out there. But the negativity is real! 

We went through a period of time trying to decide if we wanted to go on dialysis. We heavily weighed the risks, the pros, and cons. For us, personally, the pros outweighed the cons. My husband is only in his fifties. We have adult children who are starting families of their of own. We wanted him to (at the very least) extend his chances of life. 

I want to preface this by saying I fully support anyone's life plan who does not include life with dialysis or looking into kidney transplant. I cannot support those who do not support others. And I cannot support "support groups" who allow members to tear others down because of their life plans - either way.

That being said, dialysis is hard. It is not for the faint of heart. You have to deal with bodily fluids, needles, masks, gloves, catheters, fistulas, alarms, lessons, and on and on. Granted, you don't have to do this yourself. This is just what works best for our situation. In-center dialysis is a different experience. You go into the clinic three times a week for longer periods of time and have more fluids drawn out in each sitting. 

Whatever your decision, try to stay away from the negativity. It'll suck you in. The worst things we read about were all about death rates on the machine (which we were able to refute with the nurses we work with). I find if you look hard enough, you'll find the information you want to back up the claim you want to make. Hate water? You can find the support.

At any rate, don't let the negativity get you down. Depression and sad days will find you without your help. Find the light in all you do and read. That's my best advice. 

Training for Home Hemo-Dialysis

We've been training for home hemo-dialysis for what feels like months and months now. When my husband went into the hospital at the end of April with failing kidneys, they put him on dialysis right away. He had an emergency catheter placed in his neck. Later, a more permanent one was placed in his chest. When he was released from the hospital in early May, we started our training for home dialysis right away.

Training consists of going to a clinic four times a week and working with a nurse to learn the dialysis machine, catheter care, and bandage change. Previous to that, a home health nurse visited our home and a technician came as well to take water samples and see where we wanted to set up all the equipment. Good news is our water passed the choramine test. Chloramines are poisonous if introduced to the bloodstream and still have to be tested every time you make a new dialysate pack. But here we are mid-June still waiting for home setup.

It will be nice have our home set up. We travel a lot and understand that we can take our home setup on the road so long as we have enough travel packs. And if we want to go on vacation, we can have the travel packs delivered to the hotel where we plan on staying. In an emergency situation (like no electricity, no water, death in the family, etc), we can do in center dialysis in another city. I feel like all the stars aligned inspite of a life and death situation. And the doctors and nurses are incredibly supportive. Even if we choose to go off dialysis and go on hospice care, they respect our decision. Not that we're doing that, but it's nice to know they respect people's choices.

We do have an upcoming appointment with the transpant center in our local city. It feels very daunting and unreal at times. I understand that the local hospital is not part of the National Kidney Registry so I need to figure that out. The NKR has a wider reach and, if we qualify for a new kidney, he could get one faster that way. But on the other hand, a lot of patients at our local clinic have been receiving transplants. 

So for now, we'll continue to train and come home with our equipment. He looks better and is getting around better already in just a short time. I will continue to work on a kidney friendly diet and we'll start to implement exercise as he can tolerate it. 

If anyone reads this and been through this process, I would love to chat!

In The Beginning - Dialysis

I haven't written just to write and express myself in so long now. The urge came when my husband was sleeping during his dialysis treatment and the social worker entered the room with a folder of information about kidney transplant. The wave of emotion that came on was indescribable. It was already an emotional day. We were tired. I was grumpy. We were hungry. We were at a previous eye appointment for nearly three hours only to get another referral. And now we were here - on dialysis.

Dialysis is not brand new to us. My husband started it previously at a different clinic. He didn't like the way the doctor spoke to him nor the way the nurses treated their patients so he got a second opinion with a nephrologist unaffiliated with the dialysis clinic. He was strong enough at that time to go off dialysis and remain off dialysis for nearly two years. But, like many CKD (Chronic Kidney Disease) patients, he fell ill and his kidneys took a turn for the worse. This last time for good.

This time we heard about home hemo-dialysis and, fortunately, are good candidates. So we have spent the last few weeks training to bring dialysis to the comfort of home. We make a good team when it comes to setting things up. He cares for his insertion site and I prime the machine. Together we make all the conections and wait out the time together in peace. 

The hardest part is waiting for him to feel better. We keep hearing the promise that he will have more energy, better sleep, less itchiness. But so far (and I know it has only been one month) we are still waiting. He stays up half the night because his skin is crawling and when he finally falls into a deep slumber the sun is coming up then he can barely stay awake. 

Naturally, I've taken on more responsibilities around the home like mowing the lawn and running additional errands. I need to finish clearing out a space in our living room for all the medical equipment. In a way that will be nice because it is forcing me to also finish making the spare room my office at the same time. I will have to stop making excuses as to why I'm not being productive during the day. There's no television in the new office. And maybe I can take on a few new clients once things settle back down. I would really like that. 

Doing the dialysis at home has a lot more advantages for us as well. Instead of being in a clinic for half the day four to five times a week, he can relax at home and I can get some things done around the house while he dializes. I'm amashed to say I really need to clean the house! Also, we have been told we can travel with the home unit, which is great. We don't have plans for the near future, but that's nice to know. He can also do shorter sessions more days a week. Not sure yet if that's an advantge, but we will see. I can also set it up to be ready for him to start as soon as we get up in the morning. So if he is still sleepy, he can continue to nap and I'll monitor all his vitals. Which is what we've been doing in the clinic. 

We are already familiar with the CKD diet, since we've doing it the last few years. There may of course be some adjustments made due to dialysis, but we'll make them as we go. The next stage is going to be tested for transplant. And then we wait. 

Is anyone else going through something similar? I would love to hear your story! Thanks