Station 51 KMG365

Have you ever looked back on your life and recalled the dreams you had when you were young? I do all the time in fact. I have been told that I live in the 1970's. LOL! I probably do. I would even take that back to the 1960's. Times were so carefree when I was young; it went down hill beginning in 1977. UGH! 1977! I hate that year! More on that later...

 When I was young I dreamed a lot. My family lived modestly in a small community. I have always loved my hometown of Lawrenceburg, Indiana. I remember it being magical when I was young; the perfect place to dream. I guess some may say that my dreams are my 'bucket list' In any case I thought I would share some of mine.

               Photos I took of my home Lawrenceburg, Indiana.

Dream 1. I wanted to know, meet, or see Elvis Presley in concert.
Result: Unfortunately that did not happen, but came close. Elvis came to Cincinnati in 1977 shortly before he passed. My dad refused to let me go. I always regreted not seeing him; at least in concert. I loved Elvis! My mom took me to see Elvis movies when I was very small. I was listening to him in my crib! LOL! As a little girl I didn't know that he was sexy; I loved his voice, always will. That laugh of his was so incredible. When I finally noticed boys; that is when I knew he was sexy. Oh boy! Elivs, was a very kind, generous, talented man that far too many took for granted.

    One of my favorite songs by Elvis--Bridge Over Troubled Water--
                                       Las Vegas 1970

Dream 2. Station 51 KMG365. Emergency! I LOVED the TV series Emergency! My first pubescent crush was Johnny Gage, aka Randolph Mantooth. I started buying teen magazines just to get pictures of him. To this day I love fire engines and paramedics. I used to want to be a firefighter paramedic. I even took a pre-nursing class because of that dream. Result: That dream didn't come to pass either. My kidneys would not have been able to handle doing that. I did get firefighting manuals and still pour over them. The same with medicine; I love medical texts and encyclopedias.

Dream 3. I wanted to meet the Osmonds. Just after falling in love with Randy Mantooth, it was Donny Osmond and the Osmond Family. OMGoodness! So dreamy and closer to my age than Randy. So, up went the Osmond pictures as well as Randy and Elvis!
Result: I went to college at BYU-Provo and went to Osmond Studios in nearby Orem and took the tour 4 times. They were still filming the Donny and Marie TV Show then. I got to stand two inches away from Donny! So funny! So brave! No, I didn't touch him; he was married, I couldn't do that! I also got to see the brothers and Marie while in Provo. Not quite there, but, it was still awesome. Fast forward to 2004; Donny had invited his fans to be on his 'Street Team' to help promote his new album. I jumped at the chance! I was going through some tough times emotionally and financially at the time and really wanted to see him. (I did so a couple of years prior in Cincinnati. I sat right next to the stage and still only got inches close to him.) The closest place he was appearing in 2004 was Ft. Wayne, Indiana. Shucks! A dear, sweet friend of mine got tickets for the two of us. Donny invited his street team members to the sound check if you registered with them. So I did. We got there way early and kinda did some sightseeing and the hour finally arrived. Donny's assistant got us in and gave us our briefing that he is running behind so please enjoy the sound check but he probably not be meeting him. OMGoodness! I enjoyed him running around; they were having some difficulty with the equipment and he jumped off stage and started walking back to us. Oh my gosh! He isn't! YES! YES he is! That dear sweet man, very handsome I might add, went to each one of us individually and spoke to us, hugged us; it was incredible. He spoke to me for about 10 minutes. I told him I had waited 30 years for this moment. He was so wonderful! I was in heaven! The concert was incredible and my friend Brandy enjoyed it as well! I contained myself until I got in the car to head back home! I will never forget that incredible day! Brandy is so sweet, such a generously kind hearted young lady. I am grateful for Brandy being an angel in helping me fulfill this dream. In 2010 I got to see the four Osmond Brothers here in my home town for a concert! I was grateful that Heavenly Father brought them here to me! They were incredible! --- Completed dream!

                        The Osmond Brothers---Medley of hits

Dream 4. Hawaii; I always wanted to see Hawaii. I used to call it 'my dream place'. I don't know why; it just always fascinated me.
Result: My ex-husband and I tried to get stationed there when he was in the Army. Unfortunately that did not happen. Hawaii will have to stay in my dreams. However, I did do a little bit of traveling. The places I've been: Ohio; Kentucky; Illinois; Iowa; Nebraska; Wyoming; Utah; Colorado; Kansas; Missouri; Georgia; Pennsylvania; New York; Maryland; Washington, D. C.; Virginia; West Virginia; Tennessee; North Carolina; Austria; Ulm; Neu Ulm; Stuttgart; Bad Konstat; Bingen; Landsthul; Maintz; Wiesbaden; Franfurt; Wurtzburg; Giesen; Oberamergau; Garmish; Nurenburg; Dromersheim; Furth; Ettal, Germany. I have been blessed to visit all of these incredible places!

Maintz and Ulm Germany

 Dream 5. Graceland. When my dream of meeting or seeing Elvis fell through, I then dreamed of going to Graceland. I wanted to see where he called home and feel his spirit and just see everything Elvis.
Result: April 2010 I went to Graceland! I stayed at the Heartbreak Hotel on the Graceland complex went to all of the different shops and exhibits on the VIP tour. Went to Sun Records and then went to Graceland Mansion. As the bus pulled into the gates I began to weep. I could feel Elvis. I took everything in; imprinting it into my memory every detail and impression. He was magnificent! The awards and gold records overwhelming! As you finish up the mansion you come to the Meditation Garden and Elvis' grave. I had to put some flowers at his grave; as it may be the only time I ever visit. I am totally overwhelmed! My grief was as it was the day he died. Only another Elvis fan would totally understand. Elvis was more than a superstar, he was family. I sobbed like a baby. It took me 20 minutes to gain my composure. I miss him and always will. Elvis and his music got me through some tough times and highlighted some good ones. I am so glad they preserved and saved everything Elvis had. It is an incredible place, even if you are not an Elvis fan.

Dream 6. A home, family, and children. I married December 22, 1984 to a young Army Private that I knew since I was four years old, Edward Louks. We had 2 sons and lost one baby during pregnancy. Result: That only lasted 12 years and 11 months. The details why are not necessary but I lost my dream of a loving spouse. I became a struggling single mom. I adore my two sons who were still quite young. My childred are my 'Jewels', my grandchildren are my 'Crown Jewels' I may not have the loving spouse or the home. But I do have a comfortable apartment and my sons and grandchildren. I believe in the next life I will have my Eternal Companion, my little one back in the Eternities! I will have my family then, as 'Family is Forever'!

                                              My Family

Dream 7.    Yanni.  Since I never saw Elvis I always made an attempt to to see the others I loved to listen to.  In 1990 I fell in love with Yanni's music.  I saw him on his first national appearance with Linda Evans and I was hooked.  I started buying his music.  I joined his fan club and after we got home from Germany and out of the Army I hooked my Aunt Kathy.
Results:  In 1993 Yanni came to Riverbend in Cincinnati.  I had to go. So I purchased tickets for Aunt Kathy and myself and we went.  We had fifth row seats!  Wow! Incredible show!  I saw him a total of 5 times. This last time I had a VIP Pass for a backstage tour and met many of his orchestra members.  Awesome!  I hope to see him again!  I love his shows, his energy, his music warms my heart!--------Completed, well maybe.....LOL!

Yanni May 2012

Lastly...I am dreaming for a Kidney.  I need one for more quality time with my Jewels and Crown Jewels...Please spread the word.  I am not ready to give up!

Until next time.....

Deb

Thing 1 and Thing 2

There are a couple of different 'things' I wanted to post about today.

Thing 1

I suppose I should clarify a few things about what is required for my to receive a kidney.
          I would need a donor who has O+ or O- blood types (unless mine has changed since last it was checked...LOL)  After the blood type matches then they check for other tissue matching.  The closer I match with someone the risk of rejection is a little lower.
          Anyone interested in being a donor must contact the facility in which I am referred.  Right now we are looking to be referred at least to University of Cincinnati Medical Center; Kidney and Pancreas Transplant Unit.  Once the donor contacts the unit they would have to go through some testing to make sure they would be a viable donor and there would be some questions concerning commitment  From there if approved the details of where, when, and why get ironed out.  I really don't have anymore info other than that at this time.  I think they are trying not to over-load me.  I am not referred yet, but expect to be shortly.

Thing 2

A lot of people ask me, "How do you get through this?".  Well, that is a loaded question.  There are several things.  First and foremost, LOTS and LOTS of prayers!
Second, I have a great deal of faith.  I know I am being watched over, no matter the result.  Heavenly Father has ALWAYS been there to look out for me.  I have seen His hand in every step in dealing with PKD and with other things.  Third, I read a great deal.  Have you ever wondered why you may have taken a particular course in school and then decided that it was not the right direction?  Hind sight is truly 20/20.  I took a class many years ago in pre-nursing.  I was very young and shy at the time and found it difficult to deal with possibly injuring someone so, I moved on.  I was very good with the technicalities of anatomy and physiology but could not get over my fear.  Well, a few years afterwards I tended my terminally ill grandparents.  I loved them dearly and decided to keep them in their home and my aunt and I took care of what they needed along with home health care nurses.  A great deal of what I learned really paid off then.  That class has helped me in so many ways since.  I am so glad I took it!
Fourth, I listen to lots and lots of music.  I have very eclectic taste in music.  I love opera, rock, new age, classical, contemporary faith, instrumental, pop, world music, and a little country.  I love Elvis, the Osmonds, Yanni, Nathan Pachaeo, Kenneth  Cope, John Schneider, Dean Martin, Josh Groban, Queen, Foreigner, Rick Springfield, Eyna, and Loreena McKinnit to name just a few.  I don't know what I would do without my Walkman!

            Nathan Pachaeco "Nessun Dorma"

                          Yanni "Voyage"

                  Kenneth Cope "Hallelujahs"
Fifth, my children, grandchildren and the rest of my family and friends have been so very supportive.  A girl does need someone to lean on from time to time.

     My grandbabies Nathen and Abigail.

Sixth, the doctors and nurses that have been so very kind and have been my advocates from day one!  Dr. Barry Bennett; Dr. David S. Nix; Dr. G. Allen Bryant, III; Dr. Radu Zidarescu; the nurses at the Lima Health Systems Renal Clinic in Lima, Ohio and everyone that has been on theses various staff and have been so kind.
Seventh, a great company that has been in my corner and my co-workers and management that have been so supportive with my goals and needs.
Eighth gratitude!  I am so very grateful all of the people, places and things that have given me so much joy and experience.

So, with everyone's help in getting the word out, I thank you!  I thank everyone who has shared my blog entries and have been my angels along the way.  There have been a couple of extra special ones.

I need to go work out now....one of those necessary things I need to do...  :)

Until next time!

Deb

Birthdays

It is that time of year when one year ends and another one will begin. I can't remember ever really making a big deal out of my birthday.  It was never a big affair, with the exception of my 12th.  My grandparents, Wally and Libby Bills got me a wonderful cake decorated with a carousel and several of my classmates attended.  This meant so much to me.  The other two was when I turned 18; I was surprised with a cake at a church youth event and my Uncle Don and Aunt Margie took me out for my 21st.  I got to dance with my dear uncle that night.  Other than that they were subdued events.  No big deal!  Now as I end #51 I can't help but think will #52 be my last birthday?  I am very hopeful and faithful that I will get the transplant that I need, but I have to ponder the alternative.

When you feel that your life may be not quite as long as you may have hoped you look at things differently.  The sunsets are more beautiful.  The flowers more vivid and the sky more blue.  Your children and grandchildren are more precious.  You hug them a little tighter and say the things that need to be said.  So August 2nd will be a very special day this year.  We should all celebrate each birthday as if were our last!

Tender Mercies

I had a call from my Renal Clinic in Lima yesterday.  It was my nurse, Sue.  She called with further instructions from Dr. Bryant.  At first it was things I expected like adding iron and vitamin D3 supplements.  Then Sue told me that if my August labs are not stable I will have to get vessel mapping done for either a fistula or graft for dialysis; just in case a transplant does not come through.  I was not expecting that this could happen so soon. It was on my mind no matter how much I tried to dismiss it.

I walk during my lunch break at work so, I pulled out my Walkman and went at it.  It was good for me.  I needed to try to release my nervous energy.  It worked for a little while.  I found myself sending a lot of prayers to Heavenly Father begging and pleading for the function to even out for a while.  I know that prayers are heard and answered; but sometimes that answer is ‘no’.  I trust Him to do what is according to His will and what is best for me.  That being said, I still get frightened.  Not of death; that is not one of my fears; I am afraid of how I am going to manage everything and still be independent.  Also I have always had a fear of dialysis.  I have had it since I first discovered I had PKD and began my research on the disease.  Back in 1987 the outlook was not very good on PKD.  The PKD Research Foundation has come a long way.

I listened to music on my way home it was nice out and the full moon was beautiful.  I was still struggling with the information from earlier in the day.  I felt a prompting to listen to a song written and performed by my friend Kenneth Cope, Your Father’s Child, so I did.  I found myself not just listening but singing along with Kenneth.  My voice was cracking from the emotion I was feeling.  Here are the lyrics:

YOUR FATHER’S CHILD

(written by Kenneth Cope)

Strong and wise—captivating eyes

Magnificent being

Spirit bright, emanating light

Now hid from our seeing

You forget who you are

You, who outshone the stars

Amazing smile

You are your Father’s child

Son of Man, at the Lord’s right hand

Anointed as Savior

Power and grace, filling endless space

Reduced to a manger

He’d forget who He was

He, who outshone the sun

Yet, all the while

He was His Father’s child

Now there were none before or after like Him

He was God with us and is God still

In life and death His love for us defined Him

And to do His Father’s will

And so He came to save

Because you are your Father’s child

Here and now, when the fire goes out

And it keeps you from singing

When sad and gray seem to steal away

All joy and all meaning

When you’re broken in two

When your heart says you’re through

Come alive

You’re still your Father’s child

Find that smile

And be your Father’s child

© 2007God Stories (BMI)

The last verse gave me strength and reminded me that no matter what happens He will be there with me and will walk with or carry me if necessary.  He has always been there for me and has given me SO many miracles.  I have never asked for the disease to be taken away from me as I knew there was a purpose behind it.  I have been so grateful for the all of the tender mercies extended to me.  With the end of renal function in sight now, I want a transplant.  I felt positive about that; I still do.  I think it was just harder to process yesterday. 

I want to be around for my little Nathen and Abigail so much!  Just until they are a little older.  Old enough to understand.  It breaks my heart when Nathen tells me to stay with him and snuggle him.  And when Abbey asks me to rock her and sing my Mimi’s lullaby to her, what a joy!

Until next time....

Deb

The Good with the Bad

The past few days have been interesting and also fun.  

I spent a couple of days with my eldest son and his family.  I just love being with them!  It is my escape from all of the details that swim in my head all of the time.  I enjoy watching TV, telling the little ones stories, and just plain being silly.  I don't often let my 'hair' down, but when I do I try to make the most of it.  I grabbed an opportunity just before I left for the week and just took my grandson in my lap and started making faces with him.  The next thing I knew I was talking 'photo-booth' selfies of the two of us. Here are a couple of results:

How I adore my Nathen and Abby!  I plan on obtaining some fun pics of Abby and I soon!

The weather has been beautiful!  I love marveling at the exquisite beauty of nature!  This has also been a joy!  I love my walks to work with my MP3 player on, listening to Yanni, Elvis, Donny, Nathan Pacheco, my friend Kenneth Cope, with a prayer on my lips and just taking it all in.  I try to engulf my senses with things that make my heart feel lighter; grateful for another day.

The bad.

Work went well, but I was a little uncomfortable.  The right kidney was letting me know that it was not happy today.  I have learned to build up more tolerance to pain as compared to 13 years ago.  I also let my mind think about the things on the 'To Do' list that I have assembled in my head.  Called Dr. Z for Hepatitis B and Pneumonia Vaccines-Check; Remind yourself of your attorney appointment--Check;  got a call, had to reschedule attorney appointment--Bother! I think I forgot to write that one down--Double check that one in the morning; Dental appointment--still to do; mammogram--still to do;  etc.  Goodness!  I don't think the list will come to an end.  I will be on a medical treadmill for the rest of my life.  I try not to think about that part.  Nope...One check at a time!  If I may quote my dear friend Kenneth Cope, "Can't do it all at once.  Gotta do it little by little."  Awesome words of wisdom!  

I finished up at work had a nice walk home stretched out to just think a little and debate about doing a load of laundry and when was I going to get on the bike waiting for me in the living room.  I finally got on it at 10pm and spent the hour peddling and watching Hell's Kitchen. Yeah, and the right kidney?  It's still there.  I took a cool shower, gave my cats their night-time treat, and now writing this post.  

I go to work late tomorrow, so I may read one of the many books that I have that I never seem to have the time to do.  I may have to start cross-stitching again...  I suppose I should finish a project that I started about oh, 5 years ago....  LOL!  

Until next time, stop and smell the roses!

Deb

What is Polycystic Kidney Disease?

I am sure many of you are wondering, 'What is PKD?' I hope I can adequately offer some insight.

PKD as we call it, is a disease that fills up one or both kidneys with cysts.  Most strains of PKD are genetic, there is one that is not.  Mine is genetic.  My father and a few of his siblings had it and their father had PKD.  From there I do not know which ancestor had PKD.  It is passes from parent to child; it does not miss generations.  In my case it is in both of mine.  The cysts can spread to other organs as well.  I also have them in my liver.  Fortunately cysts in the liver don't interfere with function as it does with the kidneys.  The kidneys can grow to be as much as the size of a football and have been known to weigh as much as 30 pounds.

About 13 years ago I had cyst reduction surgery on both kidneys in which they removed over 2000 cysts from EACH kidney.  Let me tell you...they can cause excruciating pain!  I have been fortunate to have been relatively pain free most of the time since.  Now they are just so big that all of my abdominal organs are so crowded it  feels like being pregnant all the time.  I will attach a photo of a PKD kidney.



There is lots of research to find a cure or a way to suppress the disease which will be great for my posterity but to late for me.  Learn more at PKDCURE.ORG.


Until next time...
Deb

Going Forward

I have been touched by so many best wishes since I posted on Facebook about my function decline and hopes to find a kidney. Putting these things in writing was difficult for me.  However, it has made me hopeful and even more grateful for those I call my friends.  

I had an uneventful Independence Day.  I worked for most of it then came home and got on my stationary bike for an hour.  I try to make myself get on it, even when I don't want to, but it is getting easier.  There are more pounds to lose.  

So my two cats spent the evening trying to hide from the noise of the fireworks and watch me pumping away on the bike.  Oh they have such a thrilling life here at home!  Me, I enjoy my peace and quiet, as I don't get that much of it.

I work 40 hours a week; no slowing down for me, even when I don't feel up to it.  A girl still has to work to pay the bills, that grow every day, most importantly still get medical coverage by my employer.  On my days off I go to my oldest sons house and spend two days adoring my two toddler grandchildren.  They are my crown jewels!  They keep me fighting.  I don't want to leave them.  I am not afraid of death.  I am not ready to leave them. They are so young.  The oldest is 3, a boy, and the youngest is 2, a girl.  I miss them so very much through the week.  Even though they wear me out sometimes I wouldn't trade a second of that time for anything!  

It is getting late and I have to get up early for work.  So, until next time.

Deb

And so it begins...

My dear friends,

Alas the time will soon be upon me to begin the kidney transplant listing and referral process.  I have been extremely blessed by my Heavenly Father and I feel Him with me every day.  When the time comes I will humbly ask if there be anyone interested as a donor.  When this time comes I will be listed at University of Cincinnati Medical Center.  At least this will be our starting point.  This is not an easy thing to ask as it is a complicated process.

I spent a couple of hours at the Lima Memorial Health System Renal Clinic with a fabulous nurse (Sue) that spoke with myself, Matt and my sweet Aunt Kathy.  I poured over the materials they gave me and I felt that this was a lot to process.  Dialysis will not help me as I have polycystic kidneys; my best option is a transplant.  This will allow me more time to spend with my family.

I have incredible physicians working with me; my PCP Dr Zidarescu here in Lawrenceburg and Dr. Allen Bryant in Lima.  I don't know what I would do without their guidance with all of this.  

I am working so hard at doing what I need to help slow down the decline in my function.  My GFR was 22 yesterday and we are praying that it will rebound a few points.  I am exercising, watching my diet, and trying to avoid illness.  I lost 8 pounds!  Dr. Bryant reduced my anti-hypertensives in half!  This is HUGE for me.  It is so hard to lose weight with such large kidneys crowding everything.

I have a long road ahead and I feel love and support on this side of Heaven and angels surrounding me from Paradise.  I have strong faith that all will be as He wills, but from time to time it weighs heavy on me. It is not easy for me to speak of such things.  I do need all the friends I can get. When the time comes please spread the word!  They tell me at the Renal Clinic that help comes from surprising places.  

I will keep everyone updated as it goes along.  Please send your prayers to my loving Heavenly Father.  I am grateful for any support.  
Deb