Life With Kidney Disease

My husband is not the only one living with kidney disease.  He may be the one with the disease but I’m living with it as well. Once he was diagnosed with kidney disease and decided to let me in on the news the devastation that he had already tried to deal with on his own set in for me as well.  I instantly wondered how this was going to impact his, our and my life.  But I was eager to learn all that I could so that I would be able to support, give and get my husband the best care possible.

Dialysis…we would soon be about that life.

Funny thing once I took a deep breath I was able to reflect on how much  I already new about the disease due to it being one that had affected my mother in the later years of my life.  All I knew was what was told to me from her perspective and a few visits to her treatment while home visiting.

The finance strain it placed on her and the issue of transportation was unreal. When one is too sick to drive or has other extended circumstances that will not allow them to drive it’s very draining along with extended hospital stays, restricted diet, depression, medication cost and the other medical conditions that seem to come along with the territory; to say the least  my view was not that positive.  But, the one thing that RANG LOUDLY in my head was, that dialysis treatments would be needed for him to live until we received a new kidney which is another beast that must be slayed later.

The following morning I walked into my bosses office and explained what was going on in my life and how I did not know what I was going to do…how will I do this job and continue to take care of my husband?  My boss assured me that all would be okay and reminded me of the fact that the first year that I worked for him he donated a kidney and that his receiver was doing just fine.  In fact I met the man and his family when they came to California for a visit.  This reminder and kindness put me at ease and allowed me to see some light at the end of the tunnel before I even started the real walk of the journey.

I can remember the first visit to the center to receive information and training.   This was a very intense course that was taught with much care and concern for the patient and family member. Your blessed if you have a family member with you.  I never knew how important it would be to have a family member or friend involved in the process, until I continued to see new patients arrive for training all alone.  The training nurses kept reminding my husband of how lucky he was to have me and they would also pat me on the back for being such a wonderful advocate for him. Not only were we going through training for home dialysis but attending information sessions and being registered for a kidney transplant.  Yes, your life goes into a tail spin!

Walking into training and information session was always such a shock to my system, most places there was never an empty seat unless you arrived early. This made it very clear that in 2013 there are not many that have not been touched by the disease whether it be a close family member a family member of a friend or friend of a friend. Everywhere you turn I continue to see dialysis center being built to meet the demand of patients that enter into this lifestyle daily.

When living with this disease you feel so alone, not only the patient but, being a spouse of the patient can be lonely as well.  You lose contact with friends as they carrying on with their own lives.  A night out for dinner and a movie with your spouse can be a thing of the past and I find that I’m able to go shopping for fun as long as it’s on the internet at home. This proved to be the most difficult parts of dealing and living with Kidney Disease for me. You see, I’m a social butterfly and stay involved in so many community, social and personal projects. You start to feel as if your setting in the dialysis recliner along side of the patient. Your life is not what you have know it to be or what you envisioned it would be.

Damn You Kidney Disease

People will say that their there for you and “if there is anything they can do to help let them know” but, you will have to take into consideration that when you may need them your needs are not their priority; for good reason.  I’ve learned first hand that people mean well but their not willing to make adjustments in their life to keep a commitment to you.  This does not only apply to friends but family as well.

Reach out to organizations, nurses, social workers and other patients for advice and resources while going through this journey and know that there is light at the end of the tunnel if you take off the dark glasses and look towards the light and keep faith!

Our journey is not over and we continue to rely on one another daily to make it through. Considering I’m a glass half full kind of girl, I continue to uplift my husband and try to make his good days his best memories of this journey as he awaits the call for his new kidney which will bring quality back into our lives!