Life on dialysis

1st Year on Dialysis

It has now been 11+ years on and off with the regular routine of dialysis treatments. Through the course of my life on dialysis I chose the treatment option that best fit me at the time– From hemodialysis, peritoneal dialysis-manual and night exchanges, to home hemodialysis that I’m currently doing. To give you a background of the different treatment options as we move forward in the eBook you can have a general idea of the terminology and treatment option that I’m referring too.

The first treatment was provided through a venous catheter for temporary access. Since I needed treatment right away, they didn’t have time to get a permanent vascular access so I could start hemodialysis treatments. They surgically inserted an access port catheter tube into my vein in my chest, other areas they can do it is the neck, or leg near the groin. The catheter has two chambers to allow a two-way flow of blood. Once the catheter was placed it gave me direct access to the machine and a needle insertion was not necessary. Catheters are not ideal for permanent access. They can clog, become infected, and cause narrowing of the veins in which they positioned.

However if you need to start hemodialysis immediately like I did, a catheter will work for several weeks or months while your permanent access develops. This is why they call it a temporary access.

When I first started dialysis in 2005 I had my catheter for the first 9 months. I got used to it being there and I grew accustomed to it and my nephrologists recommended since I had a couple of live donors that I shouldn’t get a permanent access–However after nine months and the beginning of the waiting game. The wait for the evaluation process being 2-4 year I decided for a permanent access.

I really wanted to choose PD (peritoneal dialysis) home treatments at that time but didn’t see how I was going to do it with my two young boys and having them climbing into our bed each night. I didn’t want to take the risk. I did all my research–PD verses hemodialysis. The pros and cons and they both had them. I decided to go with Hemodialysis.

I was immediately scheduled for surgery to form the AV fistula. Basically the surgeon creates an AV fistula by connecting an artery directly to a vein, often in the forearm but for me it was placed on my left upper arm–They connected the artery to the vein so it can cause more blood to flow into the vein. As a result, the vein grows larger and stronger, making repeated needle insertions for hemodialysis treatments easier.

For the surgery, I was able to get local anesthetic. The surgery was performed on an outpatient basis. The recovery was a few weeks. It required four months to fully develop and be ready to use. This is because they like to see the fistula properly developed since it is less likely than other kinds of vascular access to form clots or become infected. Also, properly formed fistulas tend to last many years longer than any other kind of vascular access.

I probably experienced every symptom and effects from dialysis. I’ve had some really scary moments–From cramping in my legs to my stomach. Uncontrollable urges to vomit, swelling in my arm–Which has broken me down so many times. There were some days I just felt like I couldn’t do it anymore. I learned a lot through the balancing life of a dialysis patient. It was always unpredictable from day-to-day–A balance and a juggle to maintain everything. I started to have problems with my fistula which required many different surgeries and procedures, stints and revisions.

Taken several months before removed

The fistula continued to grow uncontrollably. Living with this deformity also was quite an experience as I was still very young. Not only physically but emotionally it was taking a toll as well. After two years I decided it was time to make a switch. My fistula access was becoming dangerous for me to have and painful to use. I had to come to another point in my life to make a new life treatment decision. I could have had another fistula placed, a graft in correction of the current fistula or Peritoneal Dialysis.

I decided the boys were now older and I knew they could now help me more with keeping up with things. I felt it was worth trying PD home treatments and it ended up being a great decision. In no time I was training with a PD nurse and on the road to doing PD. I had another surgery to place the catheter. A technique was performed with only local anesthetic. A small cut, below and a little to the side of your naval (belly button), which made a guide for the catheter through a slit into the peritoneal cavity. I had to wait about four weeks for the access to fully heal. This break-in period allows the stomach to build up scar tissue that will hold the catheter in place.

During this time I started to train almost daily on technique and they stressed the most about being careful because PD is all great but the downside is a nasty infection called peritonitis. Trust me I was trained thoroughly and somehow still caught it within the first couple months of starting. During PD I was very active. I had more energy and it prepared me for a kidney transplant.

After my kidney transplant failure I started peritoneal dialysis and it helped keep the remaining kidney function stable. I was still making urine and maintaining well. After 1 1/2 year I got another occurrence with Valley Fever and had to repeat the Amphotericin B infusion series that resulted in damaging my transplanted kidney completely and had to remove my transplant. They put another emergency access, permacath above my chest and hemodialysis Part 2 began. Everything was brand new again and was much different being older and with more health issues.

 

My husband made the decision to be my full-time care giver which allowed us to train for home hemodialysis with the NX Stage machine. As of June 2016 I have made the transition to home hemodialysis.

Please visit the following the web links below for more dialysis information:

I wanted you to share a summary of my personal account with dialysis. You will find my everyday accounts under: Dialysis Life Catagory

Treatment Option Links:
Kidney Options

Davita

7 thoughts on “Life on dialysis

  1. Your story is a very inspirational one, it lifts my heart with a pefect strenght that comes from your words! You are a shining example of faith…and i feel the love that you feel and the faith that you feel! I deal with MS and other disabilities everyday but i always go on in his strength and love. Maribel when i close my eyes tonight i will embrace you in my prayers and i will place you before the throne of the one i love… you are deserving of the greatness of His power! I thank God for just being able to read your story! Know that you are loved by many! Thank you for this moment where i can give you a big”Hug” ! Your brother in Christ!

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    1. Thank you so much for your comment and taking the time to read my story. Which is nothing without the power from our loving Father. Sometimes I wonder why I have to live with a thorn in my flesh but if it makes me better than I’m grateful. It’s always refreshing when I know I’m not along in this gratefulness. Thank you for your prayers. You have an amazing spirit and you can see that in your poetry and words. Keep expressing God’s love~

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  2. Usually when I come across stories like yours I feel sympathy..but with you, I felt inspired. Your journey is full of hope and love for Christ that it’s impossible not to be moved by it. I hail you for in times of strife, you still praise the name of the Lord.

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    1. This is all God! He always turns what is meant for darkness into light. Sometimes the thorn in the flesh is the realization of all that matters most. My son was born 2 months premature due to the kidney disease and we had amazing NICU nurses. Your blog is amazing point of view that is great for a patient to read. May God bless you and all you care for. I could see how this is your ministry.

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  3. Your story just made my day I am on dialysis too and I have been on for almost 11years now, we just have to trust in GOD with him anything is possible

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    1. I am sorry to take so long to respond. I took a little break from blogging but so glad you found your way to my site fellow kidney warrior! Yes all things are possible with God! blessings ❤

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