chiari angel

chiari angel

Friday, December 28, 2012

Happy New Year...

I have not made a News Years resolution but instead have a New Years have a new kidney and to be healthy in 2013. I am ready to say goodbye to 2012. God did not make it possible for me to have my transplant this past year but instead He led me down another path. A path that showed me just how strong I could be.He taught me lessons in patience...perseverance and to face my fears head on putting all my trust and faith in my Savior. Many times this past year I called out to Him to see me through when the pain was too much to bear. And every time God came to my rescue and gave me peace. When I was in the hospital the other week I was in so much pain from the pancreatitis and scared to death. Lying there praying so hard for some relief I thought to myself God where are you? Do you not hear me? All of a sudden...I heard music playing down the hall from my room. It was Amazing Grace...How sweet the sound ....peace came over me and I drifted off to sleep.I could feel God"s presence in that room with me.I don't know what this year is going to bring but I do know I can face whatever comes my way with God's help. The one prayer that I constantly  pray is that I am not taken from this earth just yet. I am not ready to go home because I want to see my grandchildren grow up...I want to see my son get married and have children of his own. My husband would not know how to get along without me.... we have been together so long. I have to much left to do and loved ones that depend on me. I know in my heart this time next year I will have my new kidney. I won't give up because where there is life there is hope.

Tuesday, December 25, 2012

Merry Christmas!

Merry Christmas everyone! I had a great Christmas Eve with my children and grandchildren and later this morning will be having our traditional breakfast cooked by my husband and watching the kids open presents. I am especially thankful for being with my family instead of the hospital. This Christmas has been different in that it was not about presents under the tree but just being together and enjoying every moment we can.My whole perspective on things have changed so much and even though I didn't get my new kidney for Christmas I am not giving up hope that it will happen in 2013. If you are fortunate enough to be healthy then you have everything you need. Don't take it for granted. Dealing with any kind of chronic illness is hard and the holidays can make it even more stressful. This year I decided to just let go and not worry about the little stuff and trying to make everything perfect. I did not shop for presents and instead focused on the true reason we celebrate Christmas.

On another note...I am having so much trouble with infections that seem to never go away. Must be the autoimmune factor of the kidney disease.One by one I am losing my teeth and lost another one last night. I have calcium and bone loss and no doubt it is affecting my teeth.This is so distressing for me and does not help my self esteem! But I will deal with it. thankful for your health and remember those of us who are less fortunate and fighting to live to see another day...and another Christmas with our loved ones.

Sunday, December 23, 2012

As of today...

As of today I have been waiting for a kidney transplant for 1009 days.
My stomach feels so much better today...I think I am finally over the pancreatities attack. My appetite has returned...but unfortunately I have another gum infection that is making it too painful to eat. I am having one infection after another these days. I need to go for my iron infusions but can't because of the infection. Last lab work shows my iron has dropped to 25 and I am anemic.

My sister called yesterday and has finally decided to be tested to donate her kidney to me. I know she will be turned down because of health reasons. I am going to upset some family members by saying this I know...there are people in my family who could help me but for reasons I can't understand won't even try or are too afraid. It hurts to know this because I would be first in line to do everything I could to save a life.My dear husband was tested the very day I was listed...he was not a match. My children desperately want to donate but can't because of the genetics of this disease. We just shake our heads in disbelief and ask where is family when you need them? Maybe I am being unfair...I know it is a lot to ask of someone. I just don't understand the fear or knowing you could make a difference in someone's life and instead turning your back.

Thursday, December 20, 2012

It has been a very interesting week to say the least. Pancreatities hit me hard and I ended up in the e.r. at 4 am Monday morning. It was the worst of the 3 or 4 attacks I've far. This time I chose to go home instead of staying in the hospital. I managed to stay hydrated and stayed in bed with my pain and nausea medicine and thank God I am feeling a little stronger and better every day. They took ct scans of my pancreas and found a 9mm dilation of the head of my pancreas and a blocked bile duct. They descibed my pancreas as mildly heterogenous. Scary stuff...I have no idea why I keep getting pancreatities...never have I been known to drink alcohol not even wine! And I am not a huge fan of greasy fried food. I just happen to be one of the lucky 25% that get pancreatities for unknown reasons! I believe it is caused by my IGAN and kidney failure. All this needs further examination..problem is I can't receive the dye test because of the kidneys.For a couple of days I thought it might be pancreatic cancer and was in a state of panic,did not tell anyone except for my daughter and  I finally got an appointment with a G.I. specialist but not until Feb.4th! Frustrating!!!

So on my way home from the doctor I got a call from Vanderbilt Transplant telling me that we are back to finding another couple to swap kidneys with. The other couple did not work out for some reason. I am going to put this away for awhile and just try to have a good Christmas with my family.

Friday, December 14, 2012

I was right...things are not going so great...I was told to come by my renal clinic for labs because of the tremors and cramps I am having. My creatinine went up a whole point and my iron levels are very low. I am praying for a miracle.

Wednesday, December 12, 2012

As of today I still have not heard from Vanderbilt about the test results for the kidney swap. I am aware these things take time and have decided to relax and try to be patient. I know it will happen when the time is right and I can't fret and worry about it. The last thing I want to do is be negative. I feel that if  I am too negative about things I might drive people away and that is a huge fear of mine. It helps to write things down and that is another reason why I started this blog. When people ask me how I'm  feeling...I don't know what to say.  Should I say I feel okay...or should I tell them the truth and say I feel sick and tired? And admit I feel fearful at times that I will not get through this. My uncle...before he passed away had a very good answer for when people would ask him how he was feeling...he would say with a big smile on his face... "with my fingers,that's how I'm feeling"! I loved his attitude!

I have decided to go ahead and start dialysis if my GFR  goes below 9 or 10. I remember being as low as 8 this past summer and I don't want to go through that again. Right now  my GFR is about 12. I am experiencing a lot of muscle cramps and tremors. The tremors are really worrisome because it could mean complete kidney failure. For this reason I think it is time to talk about stating dialysis. I just want to feel better!!!  On the bright side my anti-nausea medicine is that I realize you are supposed to let the pill melt on your tongue instead of swallowing it! Next doctor's appointment and blood draw is on the nephrologist said she would try  to get me through the summer without dialysis and we did it. I just wish I could avoid it altogether..

Sunday, December 9, 2012

My daughter...

My daughter is an amazing incredible young women.  We have always been very close but we are even closer now than before I became ill. With one look across a room we can read each others mind. Somewhere along the way our mother daughter relationship became best friends as well. I think if we are lucky...this happens as our daughters get older and have children of their own. I don't know what I would do without her by my side....she always encourages me to be positive but lets me cry if I feel the need. I love her so much and am so proud to be her mom.

Saturday, December 8, 2012

My Transplant Coordinator called yesterday to tell me there is still no word on the donor swap. I was not aware that she is not allowed to know anything ...not even who my donor is until all tests are in and a decision is made. I do know a final test is due in on Monday though. I have to admit my nerves are on edge and I really need to apologize to my dear hubby for biting his head off at every turn. I don't mean to do it ...I  know  he won't judge me and understands because he is going through it with me. It's not fair to him and just because I don't feel well is not an excuse to be mean! I promise to try harder. I love you Kevin...thank you for putting up with my mood swings. I am reminded of these beautiful words written by one of my favorite concert pianist 'live to love during hard times'.... and it comes back to you and gives you strength.

There was an article published a while back about a study done on people with advanced stage of kidney failure I believe it was Nephrology Today or something like that...can't remember. It said....that we experience the same symptoms as someone with advanced cancer. The study concluded there needed to be more research and ways to alleviate our pain and discomfort. Most pain medicine is not an option because it further damages the kidneys. I am one of those people who tries to 'tough it out' until I can't take it anymore. Not really a good way to be. I have a health management nurse who calls to check on me and is always surprised when I tell her I am okay.

I really am okay...just uncomfortable and have felt much worse than this. It has not been a bad day all in all and last night I rode in the Christmas Parade with my children and grandchildren! We had so much fun and made such good memories! That is what life is all about...enjoying every single moment you can. And that means being sweeter to my dear hubby as well. He deserves a medal!

Thursday, December 6, 2012

What a night it's been...

Lord,what a rough night...I am having a gout attack and my nausea has returned. Pain in my kidneys as well. I don't think I have slept more than a couple of hours and really need to crawl back in bed but I am so nervous about today. Yesterday I called Vanderbilt Transplant to find out where things stand with the testing and the donor swap...and she said my coordinator has those results and is the only one who can tell me. She left word for her to call me . Meanwhile... I was looking over my latest labs and everything seems to have slipped a little. My numbers are looking as though my kidney function is on the decline again. This seems to happen every 2 months or so and my body goes haywire on me! Infections...gout...pancreatitis. I am really having a hard time eating because nothing tastes good and I end up sick after I eat it. Just about all I can manage right now is fruit or hard candy. Brushing my teeth even makes me want to throw up! I need to gather my strength and get through this....

Saturday, December 1, 2012

The Waiting...

As of today December 1st 2012 I have been waiting  985 days for a kidney transplant...Hopefully my wait won't be much longer. I am disappointed I have not received a call from Vanderbilt yet about the tests from the donor swap and really thought I would by now..but they did say it would take 2 or 3 weeks. This is very frustrating,I have never been good at waiting for anything. I am not the most patient person in the world but I have learned to just let go and let things happen as they are supposed to. I have done everything I can do, and for now it's out of my hands. I realize there are people who have waited years and years for a kidney transplant and I feel blessed that my wait time could be much shorter. It's just that I had hoped to have this behind me for the New Year...and have spent the past few weeks preparing myself emotionally and spiritually to go through with this... things I needed to say and reflect upon. I know God has a reason for the delay and it will happen in His time... not my own.

Something I have come to realize and had to accept along this journey is that a transplant is not a cure for this disease...the process of kidney damage starts over again. There is no cure for IGA Nephropathy. What the transplant will do is give me more time...time to spend with my family....To live.
This poem touched me deeply and I will be reading it daily to remind myself to have faith in the  power of  my Saviour Jesus Christ.
The Wait
Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, "Wait."

“Wait? you say wait?" my indignant reply.
“Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word.

“My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I'm needing a 'yes', a go-ahead sign,
Or even a 'no' to which I can resign.

“You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I've been asking, and this is my cry:
I'm weary of asking! I need a reply."

Then quietly, softly, I learned of my fate,
As my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
And grumbled to God, "So, I'm waiting for what?"

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

"I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of my love for each saint.
You'd not know the power that I give to the faint.

"You'd not learn to see through clouds of despair;
You'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
When darkness and silence are all you can see.

"You'd never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.

"The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.

"You'd never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I'm doing in you.

"So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait."
by Russell Kelfer