chiari angel

chiari angel

Sunday, September 30, 2012

My Grandbabies

According to UNOS

As of today there are 93,713 people waiting for a kidney transplant.

About me..

I have a genetic kidney disease that comes from my paternal side of the family. I am in stage 5 and have been on the transplant waiting list for nearly 3 years. I have chosen with the advice of my doctors to forgo dialysis treatment until my kidney function is nearly gone. Right now my kidneys are functioning at around 8 to 13%. It goes back and forth. Because of heart issues I am at a race for time to get a kidney.

There is nothing in this life....

There is nothing in this life that can destroy you but yourself. Bad things happen to everyone, but when they do, you can’t just fall apart and die. You have to fight back. If you don’t, you’re the one who loses in the end. But if you do keep going and fight back, you win…Unknown

Saturday, September 29, 2012

A day in the life of me with stage 5 kidney disease

 I am sure most kidney patients go through all this at some stage of their illness. I have decided to blog about it. So here goes....6 am....I awake with the familiar pain and burning sensation in my stomach and ribcage and the sudden urge to vomit. Jumping up from my bed I momentarily forget that my feet and legs do not work so well in the mornings. I have at times stumbled to the floor before realizing this. Pain and numbness shoot through me like a hot poker and I feel as though I am walking on shards of broken glass. Holding onto the dresser then the wall and doorknobs I slowly make my way to the bathroom. Then I spend the next half hour gagging on the fluid that has built up in my chest and throat overnight. I remember my doctor's suggestion of going outside in the morning air to relieve nausea. I do this every morning and after an hour or so of deep breathing the nausea subsides. Then it is time to take my morning meds. 15 pills every morning and say a prayer that I keep them down. Now time for fluid check..My feet are always swollen and some mornings I know there are no shoes that are going to fit these feet. This has become a MAJOR problem especially when I have a doctor's appointment to go to. My face is usually puffy in the mornings and my stomach looks like I am very pregnant. I tell myself that if I ever get this kidney transplant I am going to buy myself the prettiest shoes! Oh well  beauty is not always on the outside and who cares at my age anyway. I am just glad to be here. I try to do a little housework but tire out very quickly. Out of breath and exhausted I get nothing done but maybe a load of laundry. I hate the fact that I am tired and start to get angry at this illness. I try to sit and relax but my kidney related muscle spasms and restless leg syndrome won't even let me do that. Time to pray for strength...I just want to be with my kids and grandkids. Thank God I can see them everyday...they are my lifeline and what I look forward too. Thank you God for my wonderful husband too...always there reminding me that we are in this together and to keep fighting..He tells me,' baby....our best days are yet to come.'  As the day wears on the fluid starts to build up even more and the pain gets increasingly worse.I try to cook dinner and actually eat it. But by the time it's done I am too exhausted to enjoy it and besides it tastes like rusty nails in my mouth anyway. And that weird amonia smell in my nose is making me sick to my stomach again. By this time of day my blood pressure starts to creep back up. I can always feel it because the av fistula the doctors placed in my arm starts to pound loudly and I can feel and hear the whooshing sound in my ears as the blood pumps through my vein. I feel as though I am being sucked into a vortex. A feeling like the cabin pressure in an airplane at takeoff. I take the rest of my meds. another 10 pills.As night falls my body tempature plummets, I feel as though I have been submerged in ice water. Kidneys also regulate body tempature among other things. I start to shake uncontrollably and cramp. So I wrap myself in blankets, take a hot shower anything to get warm! Finally I fall asleep for a few hours but always wake up around 2 or 3 am with the worst anxiety! I struggle to control my thoughts and realize it is just the toxins swirling around in my brain making me feel weird. To me this the worst of all. To feel so out of control with my body and what is happening to it. I usually end up watching tv and drifting back to sleep.Then 6 am I wake up with the familiar pain and a sudden urge to vomit....