chiari angel

chiari angel

Tuesday, October 30, 2012

Sweet angels

Tonight, holding my grand-daughter in my arms I was overcome with joy at the thought of possibly being able to watch her grow and someday become the wonderful young women I know she will be. Just like her mom. She reminds me so much of her. I looked into her beautiful blue eyes and thought...this right why I fight this illness. My grand-daughter my kids. I don't want to miss a single moment of their lives. We have missed out on so much already and now I have a chance to make it up. Looking at my grand-daughters beautiful face and seeing her so excited to see me made me even more determined..Someday she and my grand-sons will know about this journey I have been on and that they were the reason I fought so hard to get well. My sweet angels it"s been a good day....You are my light in the darkest of beacon of hope...I love you so much.

It's been a good day!

It has been a good day...Got the call from Vanderbilt and they have a match!!! A living donor made possible through the kidney swap program! Thanks to my donor for not giving up and encouraging me to have hope. We go in for blood work on the 13th of November and I possibly could have my new kidney by Christmas! Thank you God!!!

Here we go again....

Middle of the night again....2nd night in a row that fluid shifts are making it hard to sleep. I start to doze and wake up in a panic because I am choking. This is really tough right now. My dear husband half asleep kept reaching out and rubbing my back trying to comfort me and I am  shivering even wrapped in my heavy quilt.I am having painful muscle spasms from the coldness I feel throughout my body. I hate this feeling so much. I am thankful that at least for right now I am not feeling like I want to throw up. I have that awful ammonia taste in my mouth so I am thinking my BUN level must be up again. This is nothing I have not experienced before. I have gone thorough all these things and more. I take comfort in knowing someday I will have a new body.
And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away." Revelation 21:4

Monday, October 29, 2012

2 am

It's 2am. I woke up an hour ago with a feeling of drowning. So much fluid in my body and it has shifted to my lungs and throat so I am sitting up hoping it will help. I can't sleep more than a couple of hours at a time because of this. Lord, it's one of those nights.Please give me strength. I"m dizzy and the nausea is bad right now too. My doctor prescribed an anti nausea pill ,the kind they give chemo patients. I took it and am waiting for it to work so maybe I can get some sleep. I am so tired.

Wherever we are, God is.
Whatever is going on in our body,
in our mind,
in our spirit,
God is in it with us.
Nothing can separate us from God,
Who is closer to us than we are to ourselves.

Sunday, October 28, 2012


According to UNOS as of today there are 94,074 are on the kidney transplant list. Number of days I have been waiting  2 years, 7 months, and 6 days or 951 days.

Saturday, October 27, 2012

Scars and beauty

It is cold today. Too cold to wear my flipflops. Did I mention I can't wear real shoes. Years of kidney disease has left me with bone deformities in my left foot and now beginning in the right one. The fingers on my right hand also have some deformity. Despite the massive doses of calcium acetate I take daily  bone problems have occured over time. I really don't worry about the way it looks but I do wish I could find shoes to fit comfortably. Swollen ankles make that impossible. I have a scar from my AV fistula on my left arm. It started out as a tiny scar to a huge bulging vein visible under my skin. That is actually a good thing because it is finally ready to be used for dialysis. When you touch it you can feel the blood pumping through it. It is quite an amazing thing. A while back I had to have an ultrasound  on it to make sure everything was working as it should. Sensing my discomfort the  wonderful ultrasound tech. tracing her fingers along it to check for what is called the "thrill" {I know it's a funny term} said to me,'it's a  beautiful scar,always remember this is your lifeline". My scars don't bother me. When I have my transplant  scar I will be grateful for it. I believe scars can be beautiful.
I see beauty as the grace point between what hurts and what heals, between the shadow of tragedy and the light of joy. I find beauty in my scars. 
Alexandra Heather Foss

Friday, October 26, 2012

Daddy and me

This kidney disease has a long history in my family. I am told it started with my grandfather who died from it at an early age. My dad also passed away with it at the ripe old age of 32. I pray every night that my children and grandchildren be spared from it. We have come a long way with dialysis and transplant over the years but more needs to be done. We need more donors more research into kidney disease and implanting artificial kidneys.
My daddy was my hero. A strong,soft spoken,hard working man. I was his constant companion and a real daddy's girl. My last memory of him was a week before he died. The toxins in his blood went to his brain and he was crawling around on our living room floor looking for the cats that he thought were there. I was 7years old and was so frightened at the sight of my dad slowly losing his mind. The man who carried me on his shoulders reduced to arguing with me over why he could clearly see cats and I could not. His hallucinations were followed by slipping in and out of a coma. In the 1960s there were not enough dialysis machines to go around. So a group of people nicknamed "the death committee" decided who received dialysis and who didn't. My daddy was the unlucky one. How fortunate we are  to have this machine today. I fight this disease for my dad who was not even given the chance to fight. May you rest in peace daddy. You are the bright star in the night sky,you are the gentle breeze in the morning sun.

Wednesday, October 24, 2012

5 stages of grief in chronic illness

  • Denial: "This cannot happen to me!"
  • Anger: "Why did this happen to me? Who's to blame for this?"
  • Bargaining: "Just let me live 'til my my kids are grown and I'll do anything"
  • Depression: "I am too sad to do anything"
  • Acceptance: "I'm at peace with what is coming"
  • I was not aware there was 5 stages but looking back I now realize I went through every one of these.  The depression stage  for me was a feeling of hopelessness and feeling like what's the use,because I won't be here for long anyway. Having come through these stages I now feel there is a future,even if I don't live to be a ripe old age I have right now. I am still here and 2 years ago I doubted that I would be. Truth is none of us know when God will call us home. Everyone has their own burdens to bear and when I ask myself " why did this happen to me"? I think it's because this is the one burden I am strong enough to carry and that God would not give me more than I can handle. I feel I have finally reached the stage of Acceptance.

Tuesday, October 23, 2012

my thoughts...

I know it may seem at times that my life is consumed by this illness. As hard as I try to not let it take over my every waking moment it does interfere with everything I want to do. I simply cannot put my kidney disease away and hide it when it is not convenient to be sick. All I can do is to keep fighting. For a very long time my  life has consisted of hospitals, doctors ,tests after tests. It is hard to stay positive sometimes but I try my very best and will keep on trying. They say that a positive attitude is everything when you are ill. And I know that to be true. I hope I can leave a positive message for my kids and grandkids and have them to be able to say that I never gave up on my dreams and that I was a strong person. I still dream of a better day free from this illness and all the restraints it puts on my life. I know it will come,gotta have faith.

Monday, October 22, 2012


I came across this poem and it reminded of vacations with my children and grandchildren at the beach. Oh how I long for those carefree days and definitely at the top of my list of things to do after my transplant....

One summer day I walked along the sea
Having fun with my grandchildren next to me
We played and danced made footprints in the sand
Until the tide came in and erased them from the land
The sun was warm and bright filling the sky
With scarlet ribbons floating by
We sat down and watched as clouds once white
Changed from amber to gold at the edge of night
Now each time I walk along the sea
I remember my grandchildren being next to me
Playing and dancing making footprints in the sand
Until the tide came in and erased them from the land
Renate Dartois

Sunday, October 21, 2012

Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies.  ~Erich Fromm

Saturday, October 20, 2012

My Faith Sustains Me...

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Mark 5:34
He said to her, "Daughter, your faith has healed you. Go in peace and be freed from your suffering." (NIV)

Thursday, October 18, 2012

According to UNOS....Waiting list candidates 116,164 as of today at 5:48pm

A Real Hero...

Over the summer I received a phone call from a complete stranger who had heard about my need for a kidney. On the other end of the phone this sweet voice said 'Zona,you don't know me but I would like to be tested to see if I can donate my kidney to you.' Of course I was floored and after many conversations with her I knew she was the most determined person I had ever met. We went ahead with the testing but found that we were not a match,a sad day not only for me but she was heartbroken as well. She told me 'I made a commitment to do this and we are not giving up'. And she hasn't! Her kidney is going to someone else and in return I will be moved to a higher spot on the list! She is a true hero in my eyes, she is not just saving one life but possibly mine as well! How many people would do that for someone you don't know? But my dear friend is just like that,the most sincere, caring,giving person I have ever met. I will spend the rest of my life trying to live by her example.,because this world needs more people like her. Life on the Waiting List has a lot of ups and downs and so many of us will die waiting if more people don't come forward. Or just consider donating your organs when you die. Why would you not? A part of you would live on and allow someone else to live.

 Greater love hath no man than this, that a man lay down his life for his friends.  John 15:13

Monday, October 15, 2012

Well of course....

Went to the doctor today for a swollen jaw and fever. Diagnosis was infection caused by a salivary gland stone. Another side affect of kidney failure. I am on antibiotics and thank you Lord...something for this nausea!

Saturday, October 13, 2012

It's okay to fall apart sometimes....

My cousin came to visit the other day. It had been awhile since we were together and I was having a particularly bad day. One of those days where the tiredness had settled into my bones and no amount of sleep would do. I was so happy to have the company though because sometimes distraction can be the best medicine and besides my dear sweet cousin can always  make me laugh. Oh the good times we have had together. As close as sisters and know each others most intimate secrets. The look on her face when I opened the door...I knew what she was thinking. That I looked bad,tired. puffy. Can't hide anything from her. We started with the usual talk about what we had been up to since we were last together. She always has good stories to tell me. Then all at once I don't know what happened but the flood gates broke loose and I sobbed and so did she. And we were hugging each other for dear life. I told her I was sorry for falling apart. She said 'don't ever apologize for showing emotion, don't hold it in,that's what family is for. She is right,I remembered the times we were there for one another,picking each other off the floor after some life changing event.. Always holding each other up from the time we were kids until now. 'Promise me you won't give up' she said. I made that promise to her and I will keep it because I need to be there for her too.It is okay to fall apart's not a sign of weakness but strength. And when you let the tears flow with the  right person can be helpful. A sense of relief. My cousin is a special person and I love her so much.

Saturday, October 6, 2012

God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains; it is his megaphone to rouse a deaf world. — C.S. Lewis


I am not on dialysis even though most people at my stage of kidney failure are. I am prepared though to be hooked up to the machine at a moments notice. My av fistula is working fine and ready to be used. I am actually on standby status so to speak with my doctor. Which means no appointment necessary when I feel too sick. My doctor thinks dialysis may shorten my survival rate and we are hoping I can get my transplant before I have to be dialyszed. The motto is a little kidney function is better than none and once dialysis starts I will lose what little I have left. It makes since to me. But I can't help but wonder if I am making the right choice. I am not afraid of the machine and honestly sometimes I feel like okay lets do this...I have had enough. I know that B blood types wait the longest for a kidney and that would mean a longer time on dialysis.Lately I have been waking up in the middle of the night choking on fluid that shifts from my ankles to my throat. Last night was the worse and ended up sleeping in a chair. When you are first told that your kidneys are failing and you will soon need dialysis so many things run through your mind. It takes a while to wrap your head around it and to prepare emotionally. I feel I have had plenty of time to do just that. I have always been pretty tough,it's gonna be a piece of cake I just know it!

Thursday, October 4, 2012

Organ Donor

A while back sitting in the Dr. office with my aunt, I struck up a conversation with a wonderful lady. She told me she lost her son to an automobile accident a few months back and she herself was recovering from cancer. I was awestruck at her courage and strength. I don't think I could ever survive what she has been through. She went on to tell me she finds strength in the knowledge that a little piece of her son lives on in other people, because a week before his accident he signed his organ donor card. He saved 26 lives with his donated organs. Imagine just a simple act of deciding to sign a donor card and a week later saving that many lives!

To Remember Me

Wednesday, October 3, 2012

Lessons I've Learned

It is possible to be Blessed even in times of illness. I have been so Blessed with a wonderful family and friends. I appreciate and love them so much. Being ill changes your perspective and the past 10 years have brought many changes in my life. I have learned patience, tolerance,acceptance,God's mercy and love and that life really is too short. When I see people rushing to get somewhere I want to shout 'slow down...enjoy the moment you know how lucky you are'? Laugh when you can and don't waste time arguing. Never miss an opportunity to hug and tell your family and friends you love them. I thank God for the lessons I've learned and the Blessings in disguise this illness has brought me.