Wednesday, April 4, 2012

I had been thinking for quite a while that I would like to start a blog about my experiences with dialysis and the kidney transplant process/life, so that others with similar situations might find comfort or information that could be helpful to them.  When I first got sick, and even now, I find that there is a lack of personal experiences out there for me to learn or take comfort from.  I also wanted a way to share how I am feeling and what is current in the world of Jenny with my family and friends, where ever they might be.  So here we go!

I figure we can get right to the point about my childhood - I was never sick.  I never even had a bloody nose - except one that I faked to get attention in the 3rd grade.  The worst thing I ever got was a cold, or a bee sting that made my whole eye swell up.  I was pretty healthy, except for being I'd say about 40 lbs overweight since Junior High School.  My particular brand of kidney disease is the most common one, called Glomerulonephritis, an autoimmune disease.  This basically means that my anti-bodies see my kidneys as foreign objects in my body and proceed to rid my body of them.  Many people have kidney problems because they have some other health problem, like Lupus or diabetes.  I don't have Lupus and I don't have diabetes.  When I first got sick and was told that I had a kidney disease, my doctor said the cause was unknown.  It could be hereditary and just lying dormant in my system for the first part of my life, or it could have been caused by the bladder infection I had that led to the discovery of my condition.  No one in my family that I know of has had kidney problems.

Now this first blog post will be about how I first came to know that I was sick.  I am sure that many of you reading already know this story, but I am writing it out for those who didn't know me then.

I was 23 when I went to see the doctor again about a bladder infection that I had had for about 4 months.  I was being treated for it, but it wasn't getting better - in fact it was getting worse.  That day the doctor referred me to a bladder specialist.  My Mom went with me to see that specialist.  I remember that it wasn't until we were in the exam room that we actually let ourselves talk about it maybe being cancer.  But the specialist came in and told us that the problem wasn't anything having to do with my bladder, and that I needed to be referred to a kidney specialist - a Nephrologist.

I had a kidney biopsy done and then went to see the nephrologist - Dr. Melinda MacAnulty.  She told me that my immune system was killing my kidneys, but that I could slow that down by taking a bunch of medicines that she then prescribed for me.  I did go and get some of the meds and began taking them, but after a while I felt better and they were expensive, so I stopped.  About 2 years went by, I felt mostly fine, just a little tired from time to time.  Then in October of 2005, one day I couldn't go to work because my back hurt too much.  And then I couldn't go the next day because I couldn't walk very far.  I couldn't go the next day because I had to crawl from the couch to the bathroom and back in my small apartment in Salt Lake City.  I didn't have a phone so I hadn't been able to call into work to tell them I was sick.  I honestly didn't know that it was so serious, I thought it was just a backache that would go away after a few days of rest.  My employer called my Mom to tell her I hadn't been to work in about 3 days and to ask if I was okay.  She hadn't heard from me in that time either, and so she was calling everyone she knew that might be able to go to my apartment to check on me.  She was able to get in touch with one of my good friends, Adrian, who came to my apartment and stood pounding on the door for 5 minutes and almost broke it down while I crawled over to answer it.  My Mom made my Step-dad, Buck, come into Salt Lake from our home town, Tooele, to check on me.  He took one look at me and told me to help him pack whatever I would need for the next few days because he was taking me back home to Tooele.  On the way to my Mom's house, we stopped and got my blood tested at the hospital.  The doctor called later that night to tell me my test results were "not good" and that I needed to get back into LDS Hospital, to be admitted for more tests and evaluation.

For the next 2 days, I sat in the hospital bed being evaluated and having biopsy after biopsy done.  Then on the 3rd morning, just when my Mom figured it was safe to go back to work finally, a doctor who worked with my doctor came in to give me the scoop:  My kidneys were functioning at less than 10% and it was time for me to start dialysis until I could have a kidney transplant, and that they were going to take me down to surgery right away to get a venous catheter placed in my chest.  WHOA!  My response was, 1. What is dialysis?  2. What is a venous catheter?  and 3., most importantly WHERE IS MY MOMMY!?!?!

Well, in a funny story for another day, my Mom came to the hospital and I was all hooked up to the machine, receiving my first dialysis treatment.  I hated for her to see me like that, but at the same time I was so glad to see her!  She had been my rock and anchor in a life so full of trials and joys.

Since then, I've had a transplant and then I got sick again, and I'm back on dialysis.  My kidney disease never went away, and it probably never will.  It is just something that I will have to fight for the rest of my life.  But also since then I've gotten married to an amazing man, and moved to another part of the U.S. that I never really thought I would even get to visit, let alone live in.

My Grandma Palmer always say to me that it is so sad or too bad that I have to be sick with this disease.  But I tell her that I'm lucky.  At least they can fix this.  At least there are things like dialysis and kidney transplants that can help my body do what it cannot.  I am definitely lucky to live in this time, with all the technology that is available to help me through this - and maybe something more!

1 comment:

  1. Dear Jen,
    Even in everything you've gone through, your words remain full of hope and appreciation for everything you have. You are never negative or unappreciative of anyone in your life.. I find your strength very inspiring.

    Thank you for writing this, I hope you decide to continue writing as I look forward to reading further.

    Your friend,