chiari angel

chiari angel

Thursday, March 27, 2014

At the hands of an unskilled physician Ryan McGee passed away August 11th 2013 after suffering for 3 months from Chiari Malformation and IIH. His death was preventable had his doctors listened to us.

Monday, December 23, 2013

Dear Ryan

My dear precious boy,You are loved and missed so much. Not one moment goes by that I am not thinking of you. Just as when you were here with me. The morning you left us I was by your side holding your hand. Your sister was there too. Did you hear our voices speaking to you? I could tell your pain had left you and you were in a peaceful place. When you asked me the night before if I would be okay I couldn't understand why you asked that question. Did you know you were slipping away from me? I am trying to be okay and I promise you I will keep fighting for you and for your story to be told.Ryan,you were an amazing young man and I am proud to call you my son. Hailey is getting so big. Yesterday she was sitting on my lap looking at pictures on my phone. When we came to your picture she looked at it and pointed. I said 'that's Uncle Ryan' and she smiled so big!Hunter and Grayson miss you too. Hunter is wearing your favorite shirt! It's a little big on him but he wears it constantly and I believe it gives him comfort. Please watch over us from where you are and wait for me. We will be together again someday soon. All my love ,Mom

Thursday, December 12, 2013

Cause of Death

Mrs. McGee... I'm afraid your son is brain dead... His herniated brain stem collapsed and crushed his spinal column...My body went numb and I wanted to puke. I felt my legs start to buckle..the room was spinning. Somewhere in the distance I heard my daughter scream but she was standing right beside me. I wanted to scream myself but the only thing that would come out of my mouth was NO God NO! I know what 'brain dead' means and I didn't believe it. Just 20 minutes earlier he asked me for the urinal and upon using it he vomited and had a seizure.He made a deep guttural sound and he was gone.That sound I will never forget and keeps me awake at night. Now he was laying here lifeless his head hanging to the side as if his neck were broken. His eyes were open but with a fixed glare. I begged him to speak to move...squeeze my hand... anything. No one told me Chiari could cause brain death. What happened? This is not supposed to happen,I was told something like this never happens! I shook my fists in the air..Please God take me,take me! Not my son! I cried out to my son.. Oh Ryan..mama is so sorry!.. my beautiful brave boy! If only they had listened to us...they saw him getting worse...I begged for help! Why would no one listen? My dear son was not mentally ill. His brain stem was pressing on his spinal cord. My son should not have died. I remember the frightened look on his face when just one week before he was pronounced brain dead the doctor came in his room and announced 'chiari is no big just need to toughen up'. I hope those words he spouted to my dying son haunt him for the rest of his life!When are they going to listen? many more are going to die before the doctors that are supposed to care for us wise up? Cause of death..ignorance..lack of concern for my precious son.

Friday, December 6, 2013

Mothers Day will never be something I will look forward to again. It will hold a different meaning for me now. Ryan was diagnosed with chiari on that day. What started out as a normal day ended with a 3 month long battle of pain and suffering. Chiari came like a thief in the night and stole my precious happiness. This disease over the course of 12 weeks ravaged his body...his brain as he often told me 'had turned to mush'. As if that wasn't enough it stole his ability to walk and hold his head up.... swallow,or keep anything in his stomach including water. I sat day after day by his side and watched my son die a slow death. And to add insult to injury it inflicted on him the most excruciating pain you could ever imagine. I hate this thing called chiari! I despise it because it sucked the life out of my child. It hit him so fast and gave us no time to prepare for the worst possible outcome. I will forever dread Mother's Day. On the way to the hospital that day Ryan said ' Mom I'm sorry I ruined Mother's Day'.... Ryan you didn't ruin Mother's Day!....Chiari Malformation did. Ryan was the sweetest most kind hearted young man to have walked this earth. He didn't have to die! MORE DOCTORS NEED TO BE AWARE CHIARI CAN AND DOES KILL!

Tuesday, October 22, 2013

Somewhere in this world Ryan's organs are helping someone live a full and healthy life. His heart is beating in someones chest. His lungs are breathing life into someone who couldn't breath before without a struggle. His right kidney is filtering toxins out of someones body. His left kidney is doing the same in my body. Thanks to my son's gift I am healthier  than I have been in years. His pancreas and liver saved two other lives as well. Because of Ryan's gifts of life I have found some peace..even if it is just a little. I still grieve..I still hurt... I still want him here.. but at least I have the comfort of knowing a piece of my son  lives on. Fulfilling someones dreams even if not his own. I wonder if they know the pain he endured in his last days and what a special and kind person he was. The sacrifice he made. If I could speak to them I would say... live life and enjoy every moment....take special care in the gift you have been given....don't take anything for granted....his life had meaning and purpose. Ryan would be happy to know he was able to help someone else. That is what he did in this life as well as the afterlife. My son my Hero...I had 20 precious years with the privilege of being his mom. He was the greatest young man I had ever known.

Saturday, October 12, 2013

To Remember Me - I will live forever
Robert N. Test
The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. 
When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don't call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives. 
    Give my sight to the man who has never seen a sunrise, a baby's face or love in the eyes of a woman. Give my heart to a person whose own heart has caused nothing but endless days of pain.
    Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
    Give my kidneys to the one who depends on a machine to exist from week to week.
    Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
    Explore every corner of my brain.
    Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain agianst her window.
    Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
    If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man.
    Give my sins to the devil.
    Give my soul to God.
If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever. 
Robert N. Test

Friday, October 11, 2013


The pain comes in is always with me but the intensity ebbs and flows like the ocean. A song I hear or a face in the crowd that even remotely resembles my son and I am again stricken by unbearable grief. I am forever life will always consist of before Ryan's death and after Ryan's death.Losing a child is the worst possible hell one can go through.

On my mantel there is a Photo of Ryan...His donate Life hat...Two Silk Butterflies from his funeral...A Plate that says 'I Love You Mom' that he made me in 1st grade and a Box filled with his ashes. Inside me I carry  the kidney he donated to me in his death. These things besides my memories are all I have left of my precious boy. People have been so kind and have comforted me in my pain. I know Ryan is grateful for that because right before he died he asked me a million times if I was going to be okay. It was as if he wanted permission to let go of his pain and suffering. So for Ryan.. my daughter and husband and grandchildren I have to be okay.

But how do I do that? Someone tell me. There is no magic wand and time will not heal. The only thing more heartbreaking than seeing your child suffer is watching them die.

We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!


      Tuesday, August 27, 2013

      Loss, Heartache,Love ,Strength..

      I realize it has been a while since I blogged but so much has happened in my life I have not been able to focus on anything. I have actually had to remind myself to just breathe. My sons illness was first and foremost in my thoughts and everything I have done these past few months. Sadly he lost his battle with Chiari Malformation on August 11th.  The pain I feel is unbearable at times...everywhere I go everything I do is a painful reminder of what I have lost. It is true that nothing compares to the heartache of losing a child. I have not even begun to process everything that has happened. You see... the whole time my son was ill my husbands mental health suffered. Over several weeks he became quiet and  withdrawn completely shutting out his family. Then it happened...while our son was in the hospital this last time my daughter and I came home and found my husband in the garage. He had violently tried to commit suicide. He simply could not handle the pain of watching our son suffer any longer. Not getting any answers from Ryans  doctors as to why he was so sick, trip after trip to the ER just to be told there was nothing wrong with him. My husband felt helpless to help our son. They simply did not know enough about Chiari to treat it properly. I am not letting them get away with this if it takes the rest of my life. Ryan had become so weak and could no longer walk and was having seizures almost everyday. His doctors denied he was having seizures because they were not considered epileptic. Although in fact it was a seizure that caused his death and herniated his brain stem crushing his spinal column. I was by his side when it happened and it was very quick. Ryan was pronounced brain dead. My husband was fighting for his own life and we did not know if he would make it. I have never felt so alone in my life.He remains in the hospital and has a lot of work ahead of him to hopefully recover physically and mentally. Sadly he could not even attend Ryan's funeral.

      After Ryan's death we were told he had signed his organ donor card. I remember a while back him coming home and being so proud to tell me. It was extremely important to him because he had watched me suffer for years with kidney failure. He wanted so much to donate his kidney to me but I was fearful he would someday inherit my illness. Ryan donated all of his organs. His heart,liver, lungs ,skin ,pancreas. And one of his kidneys went to me! So many people were saved and lives made better because of my son's generosity. I find some comfort in that fact. Having the surgery so soon after Ryan's death was a hard decision. But one I don't regret making because Ryan wanted  so badly for me to be well. We talked about it so much and made plans to go to the beach when we both were well. Our favorite place in the whole world. Now I will be taking my son's ashes to the beach...
      his final resting place. I will also be his voice for Chiari and work to raise awareness so no one has to suffer the way my son did. I will advocate for organ donation as well. The legacy he left behind will be with us always.

      I love you Ryan. You are missed everyday by all of us...Sissy,Glen,Hunter,Grayson,Hailey,Genero,Dad and Me.

      Friday, July 5, 2013

      Hero needed..

      It has been a long week. While most people were celebrating the 4th of July with their loved ones my husband and I spent 2 whole days in the er with our son. Still sick and throwing up from his chiari surgery last Monday he became so weak he could not move and his arms went numb. The er doctors checked his shunt for blockages (there were none) and gave him a bag of IV fluid and anti nausea medicine. He continued to throw up even with the pills and on Wednesday morning he had his first seizure. He collapsed and we had to call an ambulance. They put him on anti-seizure meds,gave him a bag of fluids and glucose and sent him home again. Last night while throwing up he blacked out on the bathroom floor twice. He has a doctor appointment on Tuesday and I am going to insist that he be re-admitted to the hospital. When your child is sick it is so hard to concentrate on anything else other than getting them well again. I feel so helpless as to where to turn now. I feel as though the doctors are not listening to us. They just shake their heads and say this is uncommon but happens sometimes with chiari. NOT ACCEPTABLE!

      I really need to be strong and healthy so I can be here for my son. I urgently need a kidney donor and now more than ever! Please, if anyone reading this is interested contact Vanderbilt Transplant and give them my name, they will instruct you on how to proceed with the testing. Please help me live so I can take care of my son. Thank you for all the prayers.

      Monday, July 1, 2013

      Dealing with a chronic illness of any kind is demanding and life changing. I can handle the effects of my own illness and have been doing just that for many years. I continue to wait for my transplant,my potential donor is unable to donate at this time and may never be able to. It is my son and his diagnosis of Chiari Malformation that is foremost on my mind at the moment. He is still having a lot of problems even after all the surgery and everything he has gone through. The decompression and shunt has not relieved any of his symptoms and the doctors cannot give me any straightforward answers.  I am one upset mama right now and am going to battle for my son. We are just now learning how devastating CM is for many patients. Unfortunately Ryan is one of the 25% of  those who do not do well after the surgery.Many prayers are needed right now for my son and also for me to stay strong.

      Sunday, June 23, 2013

      Not much happening in way of getting a kidney transplant any time soon. We have hit a snag. My cousin who has gone through a good part of the tests to be my donor has been ill and unable to complete the final testing. We have been informed by the transplant team that because both his mother and mine (sisters) had diabetes he could be ineligible to donate. Still,as soon as he is feeling better he is going to go ahead and try anyway. I am just taking it a day at a time. Besides, I am concentrating on my son right now,while trying to stay as healthy as possible. I have learned a lot about Ryan's diagnosis of Chiari and it has not been as easy a recovery as I thought it would be. I now know there is no cure for CM and is a debilitating illness. The shunt that was placed to drain his cerebral spinal fluid needs ongoing adjustments and is only working half the time.He is in tremendous pain a lot of the time and I am not sure what our next step will be until his  doctors appointment next week. I have to be completely honest and admit that lately I have been so angry and have been asking God why? I am ashamed to admit that some days I have very little faith. But then I realize that God has been with me through it all and pulled me through some really scary moments. I don't know how I would have made it this far without believing in Him. Even though my faith is weak I believe God will strengthen me. 

       The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. (Isaiah 40:28-31)

      Monday, June 3, 2013

      My son Ryan..

      My son has been ill. Mother's Day he woke up with a major headache...the worst headache of his life. My healthy strong 19 year old son who was never sick a day in his young life. Two weeks prior he had headaches off and on. I thought it was an allergy or migraine,after all his sister suffers with them once in a while. I told him he needed to get more sleep,eat better. But here he was...laying on the bathroom terrible pain,throwing up,barely able to stand. Then he said his neck hurt. My first thought was meningitis as his sister looked it up on the computer. He seemed to have a lot of the symptoms. I knew this was serious. My husband and I rushed him into the car and headed to the ER. He could hardly stand the ride there and cried in pain at every bump in the road. When we reached the ER he totally collapsed at the door. The next thing I remember they were rushing him back to a very tiny room and putting an IV in his arm. After many questions from the doctor he said "Probably a severe migraine but I want to do a CT scan to make sure". After the scan the doctor came into the room and this time he was not smiling..he closed the door behind him and sat down. We see a "mass" on Ryan's brain,it's rather large..but we can't tell what type of "mass' until we do an MRI. All I heard was "large mass". Oh my God,I thought how could this be? It was 3 am and they were whisking him away for an MRI and the neurosurgery team was notified. They told me...20 minutes and we will know. The longest 20 minutes of my life. I could not understand why this was happening could not be this cruel..this was my baby! Finally..the doctors came in and gave us the news. It was not a tumor but a Chiari malformation. Chiari malformation is an abnormality in the lower part of the brain... the cerebellum. the part of the brain that controls coordination and muscle movement. My son's brain was being squeezed and pushed into his spinal column.He also had hydrocephalus..water on the brain.

      My son was placed in ICU and for three and half weeks he was so sick..he had two major brain surgeries and stopped breathing after the first one and was placed on a ventilator. My daughter wrote a post on facebook..
      .I'm sitting here watching my baby brother breathe by way of breathing tube, completely sedated, head shaved, arms restrained, tubes covering his frail body. Why, why, why is he having to go through this? I don't want to hear that this is somehow "god's" plan. I don't want the doctors to tell me that they're just not sure why his body is reacting this way. I want my baby brother back. I want to drive down the road and punch him because I saw a punch buggy and have him laugh at my girlie hit. I want to stay up late together watching the dorky science documentaries that only he and I appreciate. I want him to give me one of his big hugs and say, "I love you sissy.". Maybe I'm weak, but I just can't stand seeing him like this.
      I understood's so hard seeing someone you love suffer. As a mom I wished I could just make the pain stop for both my children.

      One night sitting by his hospital bed....Ryan wrote me a note...I treasure it...

      I just wanna say that I don't know if I could've got through this whole thing without my mom here supporting me. Shes exhausted but doesn't want to leave in case something happens and I appreciate that more than anything. This whole thing has been the toughest but but also the most eye opening experience of my life and shes here with me every step of the way. Thank you  Mom  I love you more than anything in this world.

      I can't tell you how much that meant to me. My son had grown into a man, he had pulled through something so terrifying and did it with such grace and dignity. He looked at me and said...." I know mom what does not kill us makes us stronger, that's what you always told me"

      Saturday, April 27, 2013

      I keep telling myself  I am so close I can't give up now. I've had to give myself a lot of pep talks this past week. Last Tuesday night I ended up in the er again when I became ill...dizzy,uncontrollable chills and I almost passed out. Long story is very easy to quickly become dehydrated when you have CKD. I haven't been able to eat very much because of  nausea that just won't quit. The doctors increased my nausea meds. but it only works for a short time and then it's back. We thought at first it was just a stomach virus but that doesn't seem to be the case. I have never cared for eggs very much but now an egg and dry toast is just about all I can handle without becoming ill. Sleep is a welcome escape and I am doing a lot of that. A nurse who trained in a dialysis unit told me that kidney patients are some of the strongest and most stubborn people ever. Well, I'm not feeling very strong right now...but I promise you this...I will not give up.Because things are moving along rather quickly now with a possible transplant by summer maybe June! I am still guarded by fear of disappointment. But I have to hold on to something right? I get so afraid sometimes and have decided to bite the bullet and ask my doctor for a little something to calm my nerves. I think I deserve at least to have peace of mind. Things change so quickly with this disease...hour to hour ...moment to moment. I never know what to expect when I wake up in the morning or how my day is going to end up. But I guess that could be said for anyone. That is life.

      Tuesday, April 23, 2013

      Good News....

      I have to be at Vanderbilt for labs at 7 a.m. but I can't sleep. Yesterday was a flood of emotions. I woke up yesterday morning to a phone call from my cousin Joe. He left a voice message that said..' have to call me me now'!! I immediately called him back thinking something terrible had happened because he was crying. But they were tears of joy...We are a perfect match!! This could be the end of  a nightmare and the beginning of a new life! I think we talked no less than 5 times yesterday..I had to keep pinching myself and asking if this was really happening! I feel so very grateful and fortunate right now! Of course there are more tests to be done..but I have a good feeling this is the one. Next step is Vanderbilt is flying him in for a full day of tests within the next few weeks. If he passes...and we have no reason to believe he won't...then we will schedule the surgery! We always said we were more like brother and sister than cousins...and now in a way.. we really will be! To my family and friends..please say a prayer for us as we go through this journey. I will update our progress as we go along.
      Joe and Me

      Wednesday, April 17, 2013

       The bombings at the Boston Marathon really causes one to stop and reflect on what is most important in life.How fortunate we are to live in a country where we help one another and look out for our fellow man. Instead of running away in fear people ran toward the scene to pull others to safety! I was so moved by that. All those brave men and women jumping right in there to help.
      We never know what life has in store for us or in what direction it takes it illness or make the best of every moment. I am holding on to hope for a brighter future for us all.

      Wednesday, April 10, 2013

      It is a beautiful spring day here in Tennessee! Warm and sunny...the grass has turned from brown to green. The dogwoods and daffodils are blooming and the birds are chirping outside my window! Something about springtime that gives one a sense of renewed hope! My husband made the comment that it has been the longest winter here that he could remember. And it has seemed that way. My pancreatities attack has finally diminished and am pain free today except for the edema in my feet and ankles. I thank God and relish days like they don't come very often. I think back to when my children were very young...before the kidney disease ravaged my body....and how much energy and stamina I had! I could run circles around everyone. For the longest time it was so hard for me to admit that I needed to slow down and listen to my body. At least until I was forced to.

      Nothing has happened with my cousin being tested to be my donor. He has been sick and has to have surgery. Although not a major surgery it has put our plans on hold. This is disappointing to say the least but I refuse to be upset this time. I will just push forward and hope for the best. I have learned it does me no good to worry and worry does not change the outcome of anything anyway. I am focused on the here and now and the glorious day I am having! Tomorrow...celebrating my beautiful daughter's birthday!

      Friday, April 5, 2013

      I have been thinking about my dad a lot today. In fact...I mourned for him all over again....even though he passed many years ago with the very same kidney disease I now suffer. I came across a documentary that was made around the same time as my dad's death. It is called Who Shall Live? It is about the rationing of dialysis treatment in the 60s and how the so called Death Panel chose whose life was worth saving and whose wasn't. Basically it came down to who could afford the $30,000 one had to pay to receive the treatment. It is hard to imagine this would ever happen today in this country...thank God everyone has access to this life saving machine . There was a part in the film when the interviewer asked a man about to be hooked up to a dialysis machine "what happened to the patients that were not chosen"? The man replied..."they're all dead"...I broke down and dad was one of them.
      Me with my Dad a few weeks before his death.
      I have not felt well all week and I seem to have slept more than usual, I am so tired. I believe the IV iron has worn off and I may be anemic again.I had 3 iron infusions last month which usually last a while... but not this time. I am also having another mild pancreatities attack. I recognize the symptoms as this is my 5th attack so far. The endoscopy I had revealed scarring on my pancreas due to my lasix.But of course.I.have to take them anyway. Usually I head straight to the er for my attacks but I am not going to this time. There is nothing they can do for me there that I can't do at home. Besides I know what to watch out for...the danger signs.Been down this road too many times.

      Tuesday, April 2, 2013

      According to Donate Life America website...

      • More than 115,000 men, women and children currently need lifesaving organ transplants.
      • Every 10 minutes another name is added to the national organ transplant waiting list.
      • An average of 18 people die each day from the lack of available organs for transplant.
      • In 2011, there were 8,127 deceased organ donors and 6,017 living organ donors resulting in 28,535 organ transplants.
      I am feeling terrible tonight...So I was trying to think of  an analogy to explain what it feels like to be a part of the statistics. This is what I came up are being held hostage by your are with 115,000 other hostages...all waiting in a line...sick and scared everyday not knowing if you will live or die...and every single day an 'executioner' comes by and randomly kills 18 of you...he does not does not matter how old or how young you are..and everyday you see more and more hostages taking their place in line...Some get lucky and are set free and you rejoice and are happy for them because somehow it gives you hope that maybe just maybe your day will come too.

      It takes great STRENGTH and COURAGE to live with Chronic Kidney Failure. I have never considered myself  weak but this is testing my ability. I woke up in the middle of the night and realized I had slept a good part of an entire day. I was so exhausted I literally could not move to even turn myself over in bed and now all the fluid that was in my feet and legs are in my chest and lungs making it hard to breathe. This disease is never get a break from it...there are never completely symptom free days. I wish I could just put it away and forget about it for a day or two.

      I am wondering what it would be like to get THE CALL...every time my phone rings I think maybe this is the one. It has been over three years now since I was put on the list for a kidney from a deceased donor...but then again I don't want someone else to die just so I can live. So I no longer pray for the phone to ring. I hope and pray for a living donor...

      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.

      Wednesday, February 27, 2013

      My daughter my best friend...

      She is always there to listen to laugh and even to cry with me...and help me through this journey...

      When A Mother Cries

      When a mother cries,
      Her tears stab at her daughter’s heart
      As they plummet to the floor

      When a mother cries
      Her daughter cries too
      She cries because she does not know what is wrong
      She cries because she can’t get rid of her mother’s pain
      She cries most of all because she loves her mother

      When a daughter cries because her mother cries
      Her mother cries more
      She cries because her pain has hurt her daughter
      She cries because she does not want to see her daughter cry because of her
      She cries most of all,
      Because she loves her daughter

      Once the tears have ceased however,
      What remains is love
      The love forever shared between a mother and a daughter