Thursday, February 16, 2012

February 16, 2012 - I missed blogging on Valentine's Day.  It was an ordinary day for me.  I went to drs appts.  Transportation was provided so we didn't have to worry about the drive.  On the way home as we were passing through town I saw a beautiful house cat sitting atop the roof of a home.  The cat seemed quite content and comfortable with his surroundings.  He began to settle down and curl his front paws beneath him.  He was soaking up the sun, drinking in its warmth and happiness.  I could see its eyes begin to do that half-closed thing.  I could just hear him purr -- or at least in my mind.  I envied him for just a moment.  I then realized how many people in this world are lonely and alone.  How many single moms and dads, how many children lost and abandoned and hungry for food and affection.  It was at this moment I looked at my sweet husband beside me and I realized how truly blessed and fortunate I am.  I have a loving devoted husband who is always beside me to support me.  We love to talk with each other, still engaging in interesting topics.  We can still stay up until wee hours of the morning talking about our children and grandchildren, politics, religion and our hopes and dreams for the future.  How blessed I am for this.  He still makes me laugh every day.  Now I admit sometimes I look at him with a strained face and I think to myself "who are you and what have you done with my husband?", but then I realize he is there, he is safe.

Ten years ago a doctor asked me if my husband had done anything special for me (it was Valentine's Day then).  After a quick thought I responded "every day is Valentine's Day for me".  And I truly believe this. No matter where I am or what I am doing he loves me and shows that love by his endless service to me.  I forget this sometimes.  I withhold that appreciation and devotion in return sometimes because of all my health issues.  Nonetheless I do love him and care for him and am deeply devoted to him.  I couldn't imagine one single hour without him in my life.  He helps to keep me centered and grounded and I forget about that sometimes.  Still, I am so appreciative of all he does and all he is.  We often talk about how different our lives will be when we win the lottery.....I won the lottery the day I met him....and I cashed in on it the day we married.  So my sweet, Happy Valentine's Day.  You are the love of my life...followed closely by each of our very individually unique children and grandchildren.  I am so better for having known all of you, and even more blessed for the honor of being part of your lives.  Blessings

Monday, February 13, 2012

oooooohhhhhh ahhhhhhhh.  Breathing.  Breathing.  Breathing Deeply.  Okay well I guess I am calmed down now.  Next month will be Kidney Month, and within it World Kidney Day.  For all those who have ever considered organ donation, please consider signing an organ donor card.  Please also notify all family and friends of your wishes upon your death so that there is no confusion about how you want your wishes fulfilled.  Many, many lives can be saved through lungs, liver, heart, stomach, pancreas, kidneys, eyes, intestines, skin, bones etc they can all be used to help others live fulfilling lives.  Please consider organ donation.  You can be a living donor as well, donate a part of your liver or one kidney, it can make a world of difference to others. 

Blessings & Hugs!

Saturday, February 11, 2012

Late yesterday afternoon the IV Infusion Therapy Dept Nurse from the pharmacy called to say the pre-authorization had been approved for the IVIG therapy.  However, the full cost of nursing services and supplies to give the IVIG therapy isn't covered by my insurance.  So, for the nurse to be in my home for 8-12 hours using my dialysis tubing, my already existent blood acess, my saline, syringes etc., my machine which will take my BP and pulse every half hour.....will still cost me $1200.  That's more than $100 per hour.  Wow.  I am unsure how we will proceed.  She sent me some financial papers to fill out for medical harship so we will see if we qualify to have the charges waived.  I will be receiving the IVIG once/week for 2 weeks then once a month for 3 months.  I never really saw a decrease in my PRA levels to show an improvement in being matched with someone for a transplant.  Dr. Stanley Jordan from Cedars Sinai in L.A. who developed the program says it takes time for the IVIG therapy to work.  I can only hope and move forward.  So, I'm moving on. 

Today there are over 115,000 people awaiting an organ transplant.  MOST of those are awaiting a kidney transplant.  There are over 250 million registered voters out there, and we can all live full lives with only one kidney.  PLEASE consider being an organ and/or tissue donor.  YOU could save lives.  If you don't want to donate while living (such as blood, bone marrow, kidney, portion of liver), then PLEASE consider signing a donor card to donate once you have died.  It WILL save and improve lives for those still living. 

Okay, done preaching for today. 

Well, I've been up all night long.  Too much pain from the carpal tunnel syndrome in my dominant hand.  Guess its time to get it taken care of.  I'm off to bed now.  I look forward to sweet dreams, snuggling up to my hubby and getting warm under the covers.  I have begun a bucket list of sorts.  Things I'd like to accomplish before leaving this life and moving on.  Its a crazy list.  Please feel free to share your comments.  Maybe you could give me a few more ideas?

Ride a motorcycle
Have a nice aquarium
Go Ziplining
Go mock skydiving (or the real thing if it wouldn't hurt my bones lol)
take a hot air balloon ride
Get tattoo (aaaaaaahhhhhhh for shame lol)
Go on train ride
Go on a cruise
Ride an elephant
Ride a camel
Publish book
Go to broadway play
Go to Oregon coast with all family
Get family pics with everyone in them.
Learn to play the piano
Have a nice flower/rose/secret garden for sanctuary.

Good night all.  Blessings and HUGS!!

Friday, February 10, 2012

Sitting home this afternoon trying to get more things done via computer.  I had started a letter to our soldier son who is overseas.  Wouldn't it be great if the thoughts and feelings we had for our loved ones could go straight from heart/soul/mind to paper?  I wish he could understand the true honor and pride I have for all he does and has accomplished and learned.  He is a brand new father, arrived home and within 18 hours was a dad.  He was able to spend about 2 weeks with his new sweet daughter before returning to Afghanistan.  I am sure he thinks of her all the time, and his sweet wife.  They are his core family now and he leans on his wife alot to keep him grounded and centered.  Don't most of us have at least one person in our lives we know we can count on to keep us grounded and centered?  I know I do, and I am blessed for it. 

But, back to my original thought.  I was on the computer when the phone rang.  Upon answering I discovered it was a good friend (I think he's a good friend anyway), from cyberspace.  He is a fellow dialyzor using the great NXStage system.  He became the founder of a vast support group for dialyzors and care partners as well as making a large presence in D.C. regarding patient advocacy and changing the way dialysis appears.  He is one of my heroes in a sense.  It was such a pleasant moment to know it was him on the phone and being able to listen to his fun experiences traveling the world in his journey to speak out about dialysis, NXStage and home dialysis in general.  I so enjoyed our conversation. 

This got me to reminiscing once again about the importance in remembering that each day is such a gift.  This life we lead, this life of is hard.  It is not an easy life.  It is not for the faint-hearted, but it is doable!  There are days when I want to crawl back in bed and sleep the day away, or watch TV or movies all day.  Then there are days when I actually do just that.  We are allowed such indulgences.  Still, we press forward.  We live our lives one day at a time.  We have joys and sorrows, fears and frustrations but we still press forward.  I am blessed to know Rich.  I know many many people have benefitted from his tireless efforts for the dialysis community.  I feel honored to know people like Rich, Dori, Robin, Bill, Joanne.  I am also honored to be a mother to two amazing soldier sons, and 3 daughters.  I am fortunately blessed to have grandchildren who still see me as someone who can be trusted and loved.  Isn't this what life is about?  So, I will finish my letter to my son, pay a bill or two, pet one of the kitties who is curled up beside me on the warm printer and think about what to have for dinner.  I will hug my husband and maybe call my daughter.  Towards the end of evening I will pump up my emotions to conquer another dialysis treatment, I will sleep.  I will wake up in the morning and do it all again, and I will be blessed for it. 
Received a call today from IV Infusion Home Therapy Nurse.  The transplant coordinator sent over a dosage prescription for IVIG therapy to be given as a pre-transplant therapy to reduce my PRA levels.  PRA is short for Positive Reactive Antigen (Antibodies).  High PRA levels make it very difficult to receive a transplant that will be successful.  Basically it means you will react (which is bad) to a high level of possible donors.  The IVIG therapy which is short for IntraVenous ImmunoGlobulin (sp), is given IV over a t w e l v e hour time frame.  YIKES!!! I thought 8 hours of diaysis at a time was difficult.  I cannot imagine having to sit in the chair for dialysis for 12 hours while getting IVIG at the same time and having the nurse sit and stare at me LOL.  I may need serious sedation for it.  I know my RLS could really kick in.  I must not borrow trouble though by thinking it will be difficult.  It may be weeks or months before they receive authorization to proceed.  Well.  I am off to go see my family doctor.