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 patient....as 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...

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.

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.

THE EFFECT OF KIDNEY FAILURE ON THE BRAIN
Uremia
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!

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 visit...it'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.

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. Possibly...it 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.

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 ...my 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!

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 body...is 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.

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.

A DAY IN THE LIFE OF ME WITH CKD

 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....

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 children...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.

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

Portia Lane

So very tired...

I guess my doctors visit wore me out because I have slept most of the day for the past 2 days. My labs show that I am anemic so I have to have more iron infusions. The lasix therapy is wearing me out...but so far is not working because I am still puffy. At least my kidney function is hanging in there at 13%. I just do what my body is telling me to do and rest. But it does get lonely...miss being with people. But have to be careful going out in public places because of germs and infections. I want so much for this to be over. Just tired.


Come and rest here
Come and lay your burdens down
Come and rest here
There is refuge for you now

You'll find His peace
And know you're not alone anymore
He is near

You'll find His healing
Your heart isn't shattered anymore
He is here

Breathe in
Breathe out
You will
You will find Him here

      Kari Jobe

doctors appointment...

I had my nephrologist appointment today at 3 and just now got home! I got out of the doctors office around 5 or so but hit terrible traffic on the way home. I am exhausted! Waiting on my labs to come through...so far it says my red blood cell distribution is elevated to 17.2%. WBC elevated to 11.8. No word yet on my gfr or creatinine. Which is odd because that is usually the first to appear on my labs. But they were having computer problems today so that could be the reason they are not posted yet. She did say she wants to have labs done more often and have me see the n.p. more often between visits to her. So I have an appointment with my nurse Jan in a week or two.She was not very happy with the swelling in my feet and legs so she increased my lasix to 8 pills a day at 40mill. each! Plus another water pill to take along with it!

Hailey and me...

Precious moments with my grand-daughter...I want to be around to see her grow up.

Restless Leg Syndrome

Lord have mercy..I am having a restless night! One of the most distressing symptoms of kidney disease is restless leg syndrome. I have been on the strongest dose of  requip for my restless legs for quite some time now and it has recently stopped working. My doctor prescribed another medicine to take with it...gabapintin. It was supposed to make me sleep...but that didn't happen. Instead I feel unsteady and groggy. My legs feel heavy and I just feel yucky all over.  So here I am up at 4 am. Trying to explain how restless leg syndrome feels is hard. It is so painful and the only relief you get is to constantly move them. I even get it in my arms! My muscles throughout my body contract and I can't control it. I have to have labs done on Thursday...anxious to see where my kidney function is. Hoping and praying for the best.

Along my journey I have met so many wonderful people waiting just like me for a lifesaving transplant. Fighting just to live. I always tell people...when you get down or you think life is hard just come along with me and spend a day at Vanderbilt. Look at the people in my renal clinic.Listen to their stories. Most of us are smiling through the pain because we are grateful to be alive to see another day.Behind the smiles we know what each other is going through. Or go visit a dialysis center and see what it is to sit in a chair for hours hooked up to a machine .We are fighters and survivors with a disease that ravages our bodies and leaves us exhausted. I hope and pray for all of us waiting that soon our wait will end. In April I will have the pleasure of being part of a portrait series project that a photographer friend is putting together about organ donation and those of us on the waiting list. David Y. Lee is the founder and creative director of the storytelling project and has worked very hard at encouraging people to register to be organ donors. I am looking forward to his visit and this important project. Remember...be thankful for wherever you are in life. Don't take even one second for granted. Life is a journey to be lived even when it's not perfect.

I would like to thank Find a Kidney Central for featuring my page on their website and for getting the word out for so many of us waiting for a kidney transplant. It helps to know we are not alone in this struggle. It has been a trying week for me as far as coping with painful swollen feet and skin problems associated with the edema. I was taken off my lasix 'booster' because we believe it may be the cause of my pancreas issues. But now despite increasing my lasix tablets the swelling has gotten so bad I am not getting enough circulation to my feet and legs. I have an appointment with a G.I. doctor on Monday to follow up on the pancreas stuff. I am trying very hard to stay positive...right now I feel like I am in a lonely place. I watch the world pass me by and I just want to get out there and live it. Someone wake me up from this nightmare...please.

These are dialysis needles...

Start Again...

After a couple of weeks of  i.v. iron infusions and a medicine change I am once again stable at  13% percent of my kidney function. At the encouragement of  my doctor at yesterdays appointment..I have decided I cannot give up on finding a donor. She once again said we will only use dialysis as a last resort for me and to only keep me alive until a donor is found. A live kidney transplant is my best option for long term survival. So..here I am again...pleading for a second chance, begging please consider donating if you are either B or O blood type. I ask you...what would you do if you were me? I have got to fight for my life.

From the Living Kidney Donor site....

While dialysis can be life-saving, it is only a stop-gap. It is a long, tiring, physically and emotionally draining process that is very hard on the body. Dialysis can do only about 10% of the work that a functioning kidney can do and frequently causes other severe health problems such as anemia, infection, bone disease, heart disease, and nerve damage. Consequently, the average life expectancy of a person on dialysis is only about 5 years.¹

A transplant provides a far longer life expectancy. Patients who have a transplant before dialysis becomes necessary live an average of 10–15 years longer than those on dialysis.² As one physician notes, “Kidney dialysis is an amazing procedure. But it is not yet as amazing as the kidney itself.” ³ Given the^foptions, a kidney patient’s best chance for survival is to avoid dialysis altogether and to receive a transplant^ffrom a living, rather than a deceased donor.

Dialysis is very hard on the body. When someone has been on dialysis, even if only for a short time, the risk of transplant failure is much greater. The longer the wait, the more extensive the dialysis and the higher the risk of failure grows.

Read more: http://www.livingkidneydonorsearch.com/living-donation/dialysis-a-poor-option
Imagine waking up every day with the possibility of having to be placed on a machine to stay alive.
Scary statistics...but a reality for me. I feel as though the monster is lurking outside my door. I will be starting dialysis when my gfr dips below 10% and stays there. Right now I am at 13%. I have been at 8% and managed to regain a few points. I never know what the day is going to hold for me. I wake up in the morning not knowing if I will need to go to dialysis by the time day is through. Things can change so quickly with this illness. I have accepted this as part of my life and just take it a day at a time.