chiari angel

chiari angel

Saturday, March 30, 2013

I woke up with the worst nausea...and I am itching!! No doubt it's the toxins making me so miserable.Even my eyeballs are itching! Thank God I have my anti-nausea pills on hand...I can stand just about anything except for feeling like I am going to throw up.I fell asleep last night without putting the dishes from dinner in the dishwasher and walking into the kitchen I almost lost it..just the look of dried food on the dishes..

I am so fortunate to have a good support system through all this. I honestly don't know how somehow could  do it alone..because it is a hard road to travel by yourself. I have found there is a whole community of people out there going through kidney failure willing to share their experiences... offer advice,prayer or just to listen. I wish I had found them sooner...I can't tell you how much it helps to know that I can reach out to someone who knows what it feels like to have kidney failure. There are things you should NOT say to a kidney well meaning as they are...1."You need to drink a lot of water"...(Why? Do you want to watch me drown in my own fluids?)2."Cranberry juice will cure that"...(Cranberry juice is helpful if you have a kidney infection NOT KIDNEY FAILURE..two different things")...3."You just need to pray harder...have more faith"..(I pray constantly. and my faith is what gets me through the tough days.) You can try to explain it to the people closest to you but unless they have experienced it themselves they can't truly know. I appreciate everyone I have met along the way and pray for them everyday.

I had mentioned before my cousin Joe is being tested to be a donor for me. I keep having these feelings of paranoia that he will back out! I have had that happen before with potential donors so it's understandable to feel apprehensive . But he put my mind at ease yesterday when I asked him if he had any hesitation. He said "are you kidding me?...we have been through too much together....I am not backing out"! We are hoping for surgery in the summer if it works out...

Thursday, March 28, 2013

What the Bible says About Organ Doantion...

Genesis 2:21-23 

So the Lord God caused a deep sleep to fall upon the man, and while he slept took one of his ribs and closed up its place with flesh. And the rib that the Lord God had taken from the man he made into a woman and brought her to the man. Then the man said, “This at last is bone of my bones and flesh of my flesh; she shall be called Woman, because she was taken out of Man.”

John 15:12-13 

“This is my commandment, that you love one another as I have loved you. Greater love has no one than this, that someone lay down his life for his friends.

Tuesday, March 26, 2013

So I'm not crazy afterall...

It gets worse at night...the weird feelings in my head. I feel dizzy. I see things out of the corner of my eye and when I turn to look... nothings there. Or often I will blurt out something in my sleep and it wakes me up as well as my husband..My thought process is slow and I feel as though I am having a panic attack. I came across this article and now I understand why I am having these feelings..I think this has a lot to do with my insomnia as well. I feel so restless at night and even when I do fall asleep I only stay asleep for 2 to 3 hours.

Kidneys normally remove extra water and wastes from your blood. If they fail, blood levels of urea increase. Urea is toxic to the body and can affect all the major organs including the brain. Symptoms usually only appear when kidney function falls to less than 10 percent of normal. It precedes uremic coma and causes disorders of memory, thinking, speech, perception, emotions and other neurological manifestations.

I experienced this in the hospital when my BUN level reached 105. I actually thought the nurse had put something bad in my IV! She explained to me that my BUN was too high. Right now I am sitting at about 85  to 90. At least I am aware of this and what is going on...but it is such a scary feeling..I want to feel better so bad. Just one day of freedom from all this sickness would be wonderful...

I ventured out yesterday...I usually don't drive anymore but I desperately wanted to get out of the house even if for a little while. So I drove myself to the grocery store. What a sight I must have been getting out of the car and slowing making my way across the parking lot. I often wonder if people assume I must be drunk by the way I stumble around at times.I was looking at a display of sale items  when I... without looking... grabbed the nearest buggy and made my way through the store. I heard a lady yell " EXCUSE ME where are you taking my buggy!" I quickly explained I wasn't looking and how sorry I was and ohhh... I was sooo embarresed! She snatched it away and just looked at me as if I was trying to steal it! LOL!

Sunday, March 24, 2013

My sister in-law....

My sister in-law teaching my Grandaughter to walk...
My sister in-law came down from Pennsylvania to visit this week....we don't see each other often and I have enjoyed her being here so much. I love to have people's takes my mind away from being sick even if it is for just a little while. In the morning...we will say tearful goodbyes and my husband will take her to the airport to fly home. She has been one of my biggest cheerleaders and supporters in my journey and  I often wish we lived closer to each other. Everyone has gone to bed and I am sitting here listening to the rain and my mind is wandering...why do people put off telling their friends and family how much they are loved and cared for? I always end a conversation with "I Love You". I say it to my husband and children several times a day EVERYDAY... It's so important to never leave words and feelings unspoken because none of  us truly know when God will call us Home. I am also wandering as I do a lot these days....if this is going to be the last time I see my sister in-law. I know it's a morbid thought but I can't help wandering...I will try to push that thought out of mind and dream of the day when after my transplant I can visit her and we will  take our grandchildren  to the beach. But for now...I love you Squeen! Thank you for being there and sharing my story and rallying to find a donor. You are more than a sister in-law.... you are my sister.

Saturday, March 23, 2013

Everything went well with the endoscopy yesterday,but they found that my pancreas is scarred from the pancreatities attacks I have been having. They think it is due to the amount of lasix I have to take. The GI doctor is consulting with my Nephrologist to determine the next step. is time to start  dialysis since I cannot stop or cut back on the lasix. I had sort of a rough day and slept all day after the procedure. The anesthesia made me very sick to my stomach. Speaking of that...I  find myself wondering what it would be like to feel normal again with just the aches and pains that come with getting older. and free from the pain of chronic illness or kidney failure. I can't remember...

I also need to allow myself to feel at least a little excited about my cousin being tested to donate his kidney to me.I have learned not to get my hopes up and just because someone is being tested does not mean I have a donor... but I know this is something he absolutely wants to do.... and he has moved forward with the testing. He is very excited and keeps telling me "this is going to work out". He is also gathering all the information he can about living kidney donation and last night said to me..he could not understand why people are so hesitant about the whole thing  knowing what he knows now. I told him because of his decision there could be one person less on the list and he said..." I wish I could take EVERYONE off that list" ....that's why I love him so much...he gets it ...he understands.

Wednesday, March 20, 2013

My cousin and I grew up together...there was rarely a day passed that we did not see each other. That's how it was in those days with close nit families. We are still just as  close today and even though we live far apart we talk on the phone everyday. We jokingly tell everyone we are brother and sister and it really does feel that way. He has even gotten to know my doctor on a first name basis. There have been times when I was feeling so bad and discouraged and out of the blue my phone would ring. I would pick up and immediately hear him singing "You are my sunshine only sunshine...You make me happy when skies are gray".  He instinctively knows when something is wrong and me the same with him. So it was no surprise to me when he told me he was being tested to donate his kidney. He knows I would do the same for him in a heartbeat and would give  his kidney back to him if he ever needed it! We are not even sure if he is going to match but in his words..we have to try. I also have a dear sweet niece who is being tested as well. Because of a heartbreaking tragedy a few years ago she is very much aware and a big supporter of organ donation. I am not sure if any of this will work out...I have been down this road 3 times already and you learn not to get your hopes up. I have turned it over to God completely and trust that His Will be done. One day at a time...

In the meantime I am scheduled for an endoscopy this Friday morning. They are looking at my pancreas and liver and possibly doing a biopsy. I have had issues with my pancreas for some time now and have no idea why. Maybe related to my medicines. Labs yesterday showed a small decrease in my creatinine...but nothing to get excited about, because it's very unpredictable. Hopefully,I will know more about the pancreas and liver by the weekend. Still swollen in my feet and legs,they increased my lasix yet again. 4 tablets 3 times a day EVERYDAY!

Sunday, March 17, 2013

The What If's...

I had a pretty good day yesterday. Except for the puffy feet,ankles and face I was able to make it through the day without too much complaining. Granted.....I sat around all day and napped here and there. But as the evening set in and the sun went down..I got what I call the "what if's". What if I start dialysis and it doesn't work? What if I don't get the transplant in time? What if  this kills me? My dear husband says I get what they call sundowner..that's when someone with a chronic illness gets more distressed as the sun goes down. For the most part I try to stay as positive as possible ...and one of the reason's I started this blog is to have a place to vent ...say what's on my mind and help other's understand what a patient with kidney failure goes through. Only my husband ...son and daughter know what I endure every single day. Often when other family members ask me how I'm doing...I try to answer truthfully...but I get that blank stare or they will quickly change the subject . I understand they probably feel useless to help me. But...that is not true! Sometimes...all I need is a hug....just sit with me and let me talk through my fear and what if's...let me cry...pray with me...tell me I will make it through this! I am afraid of the pain I know is coming..that is the first time I have admitted that....the pain of dialysis needles...the effect it will have on my it going to be worse than what I am feeling now? What if?...This disease has robbed me of so much. I want to take trips with my grandchildren,take them to the park and slide down the slide with my grandaughter....take my grandsons to the beach. I want to live! I am not ready Lord.

Monday, March 11, 2013

I choose not to lose hope...

To me one of the worst things that could happen is to lose hope that things will get any better. I hate to admit it...but lately when I am feeling so bad I  have found myself wanting to give up and give in. I think it is only human  to feel hopeless at times when dealing with any chronic illness.. I look back over the past year and realize what a roller coaster ride I have been on. So many ups and downs and disappointments it's no wonder. I have often heard when people are ill and dying say "I'm just too tired to fight anymore". Or someone will say..."she just gave up". Now I understand...what they mean. That is exactly why it is so important to do your best not to even ponder the thought of giving up and giving in...because once you let yourself go down that road it's hard to turn back. I am going to live as though I have many years  ahead of me because who knows maybe I do. I will never forget the day I saw the words in bold letters written across my medical records...KIDNEY FAILURE TERMINAL. My doctors never used the word "terminal" to me and it knocked off my feet. It is  not terminal..I will get a transplant and I will live a long time. How dare they say terminal! What an ugly word! No one except for God can say when I am ready to give up.

Friday, March 8, 2013


 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....

Tuesday, March 5, 2013

Keep trying...never give up

After my doctors appointment and my latest lab results I have stepped up my efforts in finding a donor. My kidney function is now at 11%. I am doing everything I can to delay or avoid dialysis .
The life expectancy of a dialysis patient is 3 to 5 years. I have been on the waiting list for 3 years but my wait could be as long 5 years and I know people who have waited even longer. So I figure I have a better chance of survival the longer I can avoid dialysis. I am having anxiety attacks over this! I am wondering if  there is going to be time to accomplish everything I want to do? I am not the same person I was before all this and am having a hard time making small talk with extended family members. I love them dearly but I don't want to hear how busy they are or the vacations they are taking.Well meaning family have asked "why don't you just go on dialysis"?Or my favorite one is when they say "I just don't understand why it is taking so long to find a kidney"! If they took the time to truly listen and understand that I am just one of 100,000 people waiting. No matter how many times I try to explain they just don't get it. I want to tell them...don't you understand how hard this is on my husband. For the first time... yesterday I saw  fear in my husbands eyes when he looked at me.Our life is wrapped up in my illness and finding someone to save my life! I  just want to spend every moment I can with my husband,kids and grandkids. That is what is most important to me.That and finding a donor.