Saturday, April 28, 2012

I have heard many people say that when some people are sick, they milk it for all its worth.  I agree.  Many people do this.  I, being the lazy sort of person that I am, had always thought that if I got sick, heck yes I would be using that as an excuse for anything and everything that I could.

But then I actually got sick.  In the summer of 2010, my friend Emily had to stand by and just wait for me to pretty much crawl down the 20 or so steps so that she could take me to the emergency room.  She couldn't lift me or really help in any way.  It was scary for me and I'm sure it was scary for her.  During that week-long hospital stay, I couldn't get out of the bed without help.  Towards the end of the stay, a physical therapist came to work with me because I had lost all of the strength in my legs.  We walked around the floor, and I handled that ok.  Then she asked me if there were any stairs at my house, and when I told her there were about 20, she said I had to be able to go up at least 10 without taking a break before she would let me go home.  So we went to practice going upstairs.  I got up 2 before I had to stop.  And that wasn't to take a break.  That was for the day.  I was ready for a nap!  So luckily my Mom said that she would take me to her house to stay for a week so that I could recover easier, because she only has about 10 steps, and they are small ones.

I knew before this incident that if I don't take care of myself I could loose the use of my legs, but that trip to the hospital was a real eye opener for me as to how quickly it can sneak up on you!  The first time that I got sick and had to start dialysis, I let my Mom baby me quite a bit.  This is mostly because I was totally lost in a sea of medical jargon and dialysis made me so tired and weak that all I wanted to do was rest and rest and when I got done with that, rest some more.  I am so grateful to her that she just let me rest.  For the first 9 months at least.  That gave my body time to heal - as much as it could, anyway - and get used to being on dialysis.  Then I was feeling stronger and I was actually able to get a part-time job and move out on my own.  The second time I got sick and had to start dialysis, I was much more weak and so it again went very hard on me.  I am lucky to have a wonderful husband who also just let me rest.  He would bring me whatever I needed and hang out with me when I wanted it and go away when I didn't want it.  So he got to baby me too.  This time I only needed it for about 6 months though.  My body got used to it easier this time.

So yes, I was very well taken care of during my times of extreme weakness.  But I never wanted to take a wheelchair home to use, that thought scared me and always will.  And even though I still get sick after my treatments, it is easier to fight through those times now.  And so that is what I do.  Because I don't want to be sitting at home all the time, being sick, being tired.  I make sure to listen to my body so that I know when I've pushed it too far.  That is very important for everyone to do.  If you don't know your body's signals, you won't know when to stop and give it a break.  I am getting bored around the house lately, so I have decided to try and go to school.  I don't like feeling as if all I'm doing is just waiting around for a kidney transplant and then I'll start my life again.  I want take a advantage of life, not my illness.

Sunday, April 15, 2012

Yesterday I had work.  I like working, because it gets me out of the house for something other than dialysis, and makes me feel more like a real human, rather than just some lump of goo that doesn't really do much of anything.

I am on Social Security Disability, because I have ESRD - End Stage Renal Disease.  I don't go to work so that I can get more money and cheat the system.  I am allowed to work part time, but not make too much money.  So I work extremely part time at Old Navy.  Like I said, I work to get out of the house and not for money, so I told the supervisors at work to only have me work if they needed me and to give the "real" employees the hours they needed first.  I don't want to take away hours from a person who needs to work for the money.

I work in the fitting room, putting back the clothes that people try on.  This is mostly because I work so infrequently that I have to change my password for the register EVERY time I work, and it is just easier for me to be in the fitting room.  The way we put the clothes on the hangers almost never changes, hehe.  I have fun working with the other employees, and probably meet a new one every time I go to work.  I end working only once or twice a month.  I am the one usually asked, "Are you new here?", when I have worked there about a year now!

But I enjoy having to get dressed in something other than my relaxing clothes and go outside and interact with people other than my family.  It is important to my sanity.  I love my family very much and I love being around them.  But I also like to see what is going on with people who aren't so much like me, and I like to see the kids that come to Old Navy too.  Well, most of them anyway.  All of this reminds me that there is a life beyond dialysis and waiting on a kidney transplant list.  Someday I will live my life more like those people that I see.  I will be able to be a little more carefree and hopefully be able to enjoy working a full time job once again.

Friday, April 6, 2012

I did indeed have dialysis today.  I go to dialysis at about 6am, Monday, Wednesday, Friday.  My doctor has prescribed for my treatment to last 3 hours and 30 minutes.  It takes about 5 minutes to get me all hooked up and about 15 minutes for me to stop bleeding and get taped up and ready to go.  I have to be stuck with two very large gauge needles (15 gauge, whereas the average size needle that is used to do regular blood work is a 21 gauge - the needle size gets bigger as the numbers get smaller).  I have this Emla cream that I can put on 1 hour before dialysis to numb up the skin on top of my access.  It helps a lot, most of the time.  I need two needles because one takes the blood flow out of my body, sends it through the filter and picks up any medicines I am getting that day, and then it comes back in through the other needle.  The needles have to be large so that the blood can flow faster.  The faster the blood can go, the more times it can go through the filter, and the cleaner it gets!  I used to have to be on the machine for 4 hours, but that time was reduced because I have such a great-working fistula in my left arm (that giant throbbing vein people are always staring at).  The fistula is actually my vein, only it has been enlarged so that it can take the damage from the large needles.  At one time, my little brother Eric believed that at dialysis they actually took ALL of my blood out of me at one time, cleaned it, and then put it back in!  He came and sat with me at dialysis once, and told me this.  He said he wondered how they kept me alive with no blood in me, hahaha!

My husband is great because he gets up with me at 4:40am and waits for me to wash my arm and then put on the Emla cream and then he has to wrap up my arm in cling wrap like a funny leftover.  It has to be wrapped up because the cream has to be about a quarter-inch thick sitting on the skin for it to have any effect.  He might be half asleep and a little cranky while this is taking place, but he does it without complaining, and that is amazing to me!

So when all is said and done, I leave the dialysis clinic at about 10 or 10:15 am.  It is supposed to free up the rest of my day so that I can so to work.  But there are still about two out of three days that I have to go back home and lay down to rest for at least 3 hours.  It still wipes me out pretty good.  The first time that I was on dialysis, I was younger, and my body hadn't been through as much stress or trauma as it has since then.  So my body got used to dialysis easier and in less time.  This time, in the months leading up to my 2nd kidney failure, I was sick and had to hospitalized many times.  My body grew very weak during those months, and I have never regained the strength that I lost during that time.  I can't do regular strength training or exercising because of my high blood pressure and also because my daily fluid intake is limited to 32 ounces of liquid per day, so I wouldn't be able to rehydrate properly.  I am hoping to find some low-impact yoga or something that might help me start to rebuild my strength and balance.  Hopefully this blog post answered some questions you might have had about me but were not sure how to ask.  If anyone has any questions for me, please feel free to ask.  I love when people ask questions about anything related to my situation, because it gives me a chance to tell them about kidney disease, dialysis, and most importantly organ donation!

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!