chiari angel

chiari angel

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...