Friday, December 24, 2010

Christmas Eve..Kinda Tired

Well it is hard to believe it is Christmas Eve, we scaled way back this year..obviously. Scott hasn't been employed since Feb. of 2009 when the company he kept on it's feet for 14 years decided they didn't want to pay him anymore..... Whoa I can hear everyone inhale.....Primary Income Earner. unemployed...Renal Failure wife, two kids in college and two mortgages that would choke a horse....savings minimal. Uh Oh......Yep pretty much. So listen my children how on the Night before Christmas.....and all through the house......the Kilberg's really have more to be thankful for this year than last......

So as of Feb 14th 2010 we had no income.  We are not rich people....monetarily. Do we wish we would have done some things differently????Maybe but you can't take it with you...and you know we never knew when my kidney's would crap out. For years I had infection after infection and passed so many stones I was thinking of creating a jewelery line.  So those trips to Hawaii to see where I spent so much of my childhood happy time are priceless memories I wouldn't trade for anything. However as a stay at home mom...yes I have three college degrees but Scott and I wanted to give our children the childhood we never had...I got to be with my boys every minute of every day while they reached milestone after milestone I was the one who got to see those first. But I digress..later I will blog about my opinions about how to raise children when you have a chronic disease that can end your life at any time.....OOOOO a teaser !!!!

The same month I sat in Jerry Dancik's office for my tri-monthly check. Being honest I knew things weren't getting any better....if I didn't hydrate enough I could smell ammonia in my nose, I had  heart fluttering.....which I went to the cardiologist for...had the stress test/echo....and passed...let me just say I blew that bad boy out. I was running and talking as the incline increased and the speed increased finally after 11 minutes I jumped off....I set the distance record at the office on that thing for yapping the whole time..again it's my kidney's that are shot the rest of me is super. Long and short Jerry gave me the head down eyes up look. With Jerry that means business. The D word came out.....How long do ya figure??? He looked at me and said....late fall. Well folks I am proud to say I beat him...for once. I made it to January  ! ! ! ! !  and don't think I didn't through that in his face.....LOL.We got up to leave and Dr Dancik asks Scott..."will you be okay????...if you need anything call me"...Okay I'm crying right now....That wasn't just a pleasantry he meant it. Renal Patients PAY must have a relationship with your nephrologist. Scott has Jerry's cell phone number and has had it for years.....We have never used it...Oh I'm bad  yes THEY have...for setting up tee times.LOLYou HAVE to talk to him/her, be honest, write stuff down to bring up and always bring a second set of ears to cover alot of stuff as your renal function goes toward end stage....It is your job to work with your medical support....if you drink STOP, if you smoke STOP and do not LIE to the doc....they will catch you every time and you are only hurting yourself. Now Jerry and I are both characters....God put us together for a reason....He threw in  Melanie as the coach and eye roller for when we get too out of hand...Until really November I was pretty much asymptomatic.....then the phosphorus levels just weren't cooperating with the binders (you take these with meals to pull the phosphorus out of the food). However by this time there is hardly anything you can eat...and I am not eating much which I never have sooooo. Yes Jerry caught me when he looked at my weight and saw 137......What did you have your purse on your shoulder again????'...Well, Mel and I were talking and I got to leave my boots and coat on too...maybe I did have my purse on my shoulder. Seeeeee ya can't fool the good guys, 117......ugh got me.

So what about insurance????? We had wonderful insurance with Scott's prior employment. I had my own transplant /renal coordinator and a separate policy for the transplant that would cover anything Medicare didn't. Okay COBRA kicked in which was fine until his former employer decided since they had no income (well dah Scott was the income guy ugh) they were reducing our insurance....get a call on Friday in are on hold on the transplant list and must only go to Cleveland Clinic or Chicago Hospital for a transplant. HELLO I am in Detroit and W. Beaumont has kept me alive for 22 years are you nuts??????Long ugly story short....Don't screw with a patient W. Beaumont LOVES and have Jerry Dancik for a doc.....which is me (Cue ,,,rainbow over head) No they wouldn't take me off the list or put me on hold and in the end The Master Julius Eason financial coordinator for transplants and my hubby Scott got it straightened out with the offending insurance co. making a temporary policy..renewable every 3 month with Beaumont...RENAL PATIENTS know your insurance rights....your hospital has tons of resources through the financial department and social workers. CRF's (chronic renal failures) you are not alone, don't panic there are tons of people out there to help you.

Okay the backlash was it was crappy insurance ...when my youngest's appendix went hot on a Friday night in East Lansing they denied EVERYTHING including pain medicine. God bless second favorite hospital...and a fabulous one with amazing talent and kind knowledgeable staff. We are slowly getting them to pay...fight fight fight. However this was a red flag we had to get a better insurance......Up steps a friend Scott has had for years. He needs a technical writer and editor for some work in his business..He will hire me full time and we can go halfsies on the insurance....Group BC/BS MI with amazing Rx coverage. Later I will blog about these people who live their religion.

Sooo here we are todayI have a new BFN (Best friend nurse) at W. Beaumont Troy Dialysis BARB!!!! she is crazy like PD nurse, should be fun!!!! and Loretta,,MSW at Beaumont Dialysis ( again cue Rainbow,,,,AAaaaaa) she is my go to gal for everything Scott and I have no clue about. I could go on and on about how Michiagn State University Financial Department helped make sure our boys tuition was covered and James Madison College @MSU gave Sam additional scholarships. Our dear friend Jeff Taylor who keeps fixing the Volvo with 250,000 miles on it and will never ever let us pay him....another family that lives their religion. My friend Jan who lives across the lake....she has MS and the two of us walk together everyday...we are friggin thrilled to be upright and moving...limpity limp. I love walking and talking with her....there is so much that doesn't have to be said we just get it.
RENAL not isolate yourselves there are so many amazing people out there...keep reaching out don't turn pity train!!!!

So there you are for now.....Let me tell you the most important person who really saved my life is my husband Scott. As you may be able to tell I can be a piece of work and he always knows how to handle me, he loves me no matter what and man can he work the medical system. RENAL PATIENTS...remember to take a good look at your support people whoever they are....that is a special kind of love they have for you do not take it for granted...

Lastly do not think God isn't listening just because you don't get what you want right away...I prayed for all those years to stay off dialysis until all three high school graduations were completed...Sam graduated in June 2009 I went on the list Sept 2009....coincidence???? I think not Sherlock AND I staved off dialysis for over another year WOOOOOO HOOOOO fist pump. So I know I am going to do amazingly well no matter what I encounter.

Okay break out the Kleenex.........Yesterday an amazing thing happened.....a selfless woman who had lost her sister to Melanoma asked to be tested to see if she would be a match for a live transplant. OMG I do not know this person yet she cares enough about me to offer this. We are sisters under the skin because we know how precious life is....I am telling you readers this world is full of wonderful, kind and amazing your eyes this Christmas Eve and see all that God has given us. I LOVE this world and am happy to share all my points of view and experiences with you. May God Bless all of you on this special night of his son's birth (although really I think it was in August.....hey this is the way I am) Carry on in making this world a kinder and better place regardless of your physical challenges. The big guy is watching!!!!

Have a Holy and Merry Christmas,

Wednesday, December 22, 2010

My Time on the List: The Ball Is Rollling

My Time on the List: The Ball Is Rollling: "Well here it is my first post. Let's be honest. I hid my Renal Failure for years because I have always been the invincible one. I am the gir..."

The Ball Is Rollling

Well here it is my first post. Let's be honest. I hid my Renal Failure for years because I have always been the invincible one. I am the girl who popped out 3 babies like a bad Mexican Meal. Longest labor 45 minutes from first to last labor pain..not even an aspirin though I must admit I was watching those drug deals going down in the parking lot with great envy....However Renal patients don't do so well with pain meds and this wasn't about me it was about those three sweet boys the came out so healthy thanks  to God and Dr Boutt. Pop out, take a shower, put my old clothes on and home in 36 hours. I painted our houses, passed 3 cm kidney stones at home and like the Energizer Bunny just kept going.....Denial????/ Ya think???? I did everything my Doc and friend Jerry Dancik told me to do from the minute I spent 5 hours in his office as he grilled me about my life those 21 years ago. Suspecting I was pregnant my old nephro said I had to terminate nooooo I don't think so. So a week later as I sat in the ER at W. Beaumont Royal Oak with a huge renal infection from stone blockage and tears running down my cheeks a beautiful young Asian resident stopped to ask what she could do for me and out I blubbered my story. She pulled a chair up and sat with me and told me she had just finished her Nephrology intership with the best doc she had ever run across. She wrote down his office number and she changed my life. Dr Dancik had the keen acuity and extreme diagnostic ability to define exactly what I had....Renal Tubular Acidosis. No more hypercalmic paralysis, mind numbing cramping etc. It took mnay years to get the stone passing under control.....Thanks to Dr John Harding and all his hard work and Laser ability. I also met one Melanie Istre Smith, Dr Dancik's all round nurse who can do everything and make mountains move. She has been my guardian angel for all these years. So when they said the time had come for PD I never questioned them for one minute. With Christmas coming and the Jennifer's at Gift of Life Michigan agreeing I should blog my experiences to help those who are going down similar roads the most important thing I must do is to thank God for Jerry and Melanie who got me where I am today. And when we wanted to name #3 after Jerry and he told me to give the kid a break...we listened to him then to...and didn't.o))))) No matter where you are in your illness when you feel so so sad look around and count your guardian angels and that crazy rainbow starts to shine. So thats where we are starting. I think I have met a few new angels this week.