Sunday, April 3, 2011

My Time on the List: Welcome To National Donate Life Month

My Time on the List: Welcome To National Donate Life Month: "Welcome to National Donate Life Month to all with a vested interest in organ transplant which most obviously is me or why would I blog ..."

Welcome To National Donate Life Month

Welcome to National Donate Life Month to all with a vested interest in organ transplant which most obviously is me or why would I blog about this experience for my friends at Gift of Life Michigan and the National Kidney Foundation who help people like me beyond words..man that's a run on sentence.

April is (in most normal places in the northern hemisphere) the month of new life, renewal and Resurrection of hope. A good month to represent the needs of over 120,000 people in the United States....I am thrilled we have gotten this recognition....this month will bring more organ donor registration but will it really educate the people uneducated about organ donation???? I doubt it seriously....Where we have to begin..and why this month IS so special...is in all the elementary schools when little children listen to their teachers words as gospel. Adults are generally unconcerned unless something touches them personally...Children have all the energy, ideology and belief system to eventually create an Opt-Out society....So it is my prayer that parents won't complain to school boards about the discussion of Organ Donation and that if they do school administrations will have the gutts to stand up to them.The children are braver than their parents....the parents are the ones who don't want to discuss life and death...remember...Mom where is Fluffy???? Oh he went to live on a nice farm..... Learning about organ donation and the existence of death and life  at an early age makes acceptance that much easier. You never remember NOT knowing about it. Besides it may light the spark of many little girls and boys to LOVE science because they want to help....I have seen that happen many times.....How many docs do you know who had a sibling or parent die when they were young???? For the National Donate Life Month...let us educate the future...our children.

Sooo Peritoneal Dialysis is going great I am sure I have so many stars Barb needs to put a new board up.....I have had some interesting life bumps this month.....

I believe I have described how I am the Queen of kidney stone formers......but I have been doing very well for 2 years...as in none. WELLLLLLLL......don't let anyone tell you God does not have a sick sense of humor.....Last Sunday I had what I thought was gas as my left quarter had was hurting...If you get gas with PD it can be pretty uncomfortable.......Praise Beano....BUT as Monday rolled around I began to suspect something....the pain started to get colicky...meaning it came and went until it decided to no longer go...I knew it was a stone...It has been many years since I needed to hit the ER for passing a stone. I know when I need to go and not but now I am on PD and not sure....you guessed Scott got the Bat phone and called Barb. Jill answered ...my other blessed PD nurse...she agreed unfortunately...I was passing urine so I would take the pain meds and walk and rock and jump and run up and down the stairs.....Until I started throwing up..from the pain meds and the pain...The fluids are what push the stone down so at 7:30 pm I gave up and went to Troy Beaumont ER...Let me just say their triage nurses are the very best....They had me in the back with in 10 minutes..I am sure they suffered the wrath of the guy blowing his nose with the terminal cold. I got ER nurse Leanne who should really be a doc...if your reading this I mean it. She could tell I was an old timer at this and asked me what worked best...LOVE IT.....Got my IV and Pain meds Boom 1/2hour from home and I am set up. My doc comes in...sorry had meds by then..do remember he was cute....He asked what I thought...I said after 4 bags of IV if I haven't passed it we have trouble BUT it is moving so I am thinking 2-4 hours....They were busy and I said put me in the hall by the toilet....They love me ;o))))) I got to talk to everyone....about dogs, exercise, perfume....I texted my girlfriend Jan and told her where I was as she knew I was working on a stone...She said she was praying for me...I looked at Hubby and said...Jan just started praying for me we will be outta here in a couple of hours.....9:58pm we were walking out. May I say I got applause for this stone....I have passed some HUGE ones..but this was huge and SQUARE...not a hook but points....I spent 3 very uncomfortable days but am fine now....Please understand positive attitude gets me through all this....and amazing ER staff who listens and triage nurses who fist pump when you pass the stone...♥♥♥ BEAUMONT ROCKS...OOOooo bad pun.

So we figure my week should improve...HAHAHAHAHAHA.

Well cowboys and cowgirls when we last left this ranch I was told I had missed an appointment at Social Security to have my Medicare application reviewed that I had not submitted...which they sent back to me a week earlier and never told me I had. Yea I know read it over a few times...you're gonna have to do that again in this blog. As you may remember once  a kidney patient starts dialysis you apply for Medicare as they help pay for your dialysis and transplant so you don't wind up on Medicaid with your insurance and money wiped out and they have to pay for everything....At least I think that is their reasoning,,idk it makes sense so maybe not. Okay I passed the boulder on Monday night and my NEW appointment was Wednesday morning 9:00am. I'm a trooper plus as we remember Loretta my beautiful social worker and the NKF had NEVER heard of a dialysis patient having to do this. We were all wondering if this was going to start happening more often to the chronically ill...So I was going in to see what was up.....This isn't pretty...

We got to the  Social Security office in a 'shall remain nameless' city 10 minutes before our appointment...yes we had an appointment. I would like to say the security officer was a very very nice man who knew many of the incoming people by name...that is sad. My name was called over a PA system out of WWII. We sat down and a man introduced himself and said he would be reviewing my application...for 'let's see Medicare due to Renal Failure'. Scott proceeded to explain the whole thing and asked why I was told I had to appear in person??? Never got an answer to that... The 'man' went over the application that had been sent back to me because I didn't send it to them...Hmm how did you get it then????? Whatever.. I could see this was not going anywhere I wanted to be...and I was pretty sure I was going to toss my cookies as I was still nauseated from pain meds. We reviewed all of my information and he said...You are denied. Huh??? Yes well you don't have  enough quarters in the last  10 years to qualify...and you aren't 65. Scott patiently reminded him I was a stay at home parent and HIS dependant for the last 28 years..with sporadic working...He said yes I didn't qualify because I hadn't paid enough quarters in the last 10 years....Scott AGAIN said I was his dependant and he had paid his part and several other peoples to the US Gov't since he was 16. The 'man' said that made no difference I was denied ..that he would go ahead and apply and I would be denied I could appeal but I would be denied. This guy loved the word DENIED. So Scott asked for his supervisor.....he said certainly but let me type up the application..by the time he was done she was "in a meeting". I refrained from name calling only because he was too ignorant about his work for words...We knew he had no clue...So off we went DENIED..I actually looked in the parking lot for a car with a license plate DENIED. As soon as we got home Scott called Loretta my superwoman social worker and she did what she does....I went to bed, Scott went to work...within an hour Scott called to say Loretta kicked some butt..as he got a call from the head of that office saying a mistake was made and I was more than qualified then an hour later Scott got a call from Mr Denied saying he had investigated the 'rules' and I qualified....Yea I am sure he investigated it after getting his butt kicked....Anyway I am glad I did my mole work so now the NKF can watch to see if this happens more often. I pray it was just some arrogant man who feels being a mother of 3 boys less than 6 years apart is a useless waste of time. We had other little tiffs during the interview like he insinuating I didn't read my  paperwork before "attesting legally with risk of prosecution" that it was all true and deciding he should read it for me. I cleared him up with a 'look' and YESSSSSS I did...ask the people waiting in the office. The voice even scared me...Whoa possession at the SS office. I think my eyes even rolled back a little.

Yes I did file two complaints with the Social Security Department...big deal got a "Sorry my bad" from them and a cut and paste list of the rules for qualification given my case....I responded with yes well I knew these HE didn't perhaps you should CC him.....This are the people you want running health care  cause trust me this is how it will be.

So I am off to make baby clothes for an up coming shower.

Feeling better every day
I am sorry but YOU ARE ALL DENIED any negativity in your life.....

Talk to ya next week...when I will be another year older...YEA!!!!!  let me remind all of you who don't like getting older the alternative involves pushing up daisies.

BONNIE