Showing posts with label kidney failure. Show all posts
Showing posts with label kidney failure. Show all posts

Friday, March 7, 2014

TMI!!! Maybe, but yall know I don't have a filter!

Where to start......

*first grab the kleenex,, me,, not you... ok, here goes nothing,, emotional monsoon in 3,,,2,,,1,,,, GO!*

What a week!   We went up on Sunday to stay the night in St George because Todd's surgery for his dialysis catheter was scheduled for Monday at 5:45 am.  We get to the hospital, get him checked in, and they take him off for surgery about 7:30.  YAY!  It was went really quickly, mainly because Todd's parentals came down and helped keep me occupied and my mind off things. *thank heavens*

The dr comes out and tells me every thing went great and I will get to see him in about 40 minutes, and we will get to go home about an hour after that.  YAY!!!  I'm elated, happy, relieved,,, until an hour goes by and no one comes to get me. I go up to the desk and ask and she says, someone will be out to talk to me in a minute. *Ensue panic attack*


The nurse comes out and tells me that they are admitting him because of low blood sugars,, WTH? Duh his blood sugars are low, he's been fasting and you put him under!  After about an hour we finally get into a room and they bring in my love.  The CNA comes in and says he's been admitted for high potassium,, WHAT?!?!?!? So instead of arguing with him, I ask for him to find me Dr Mercadom the nephorologist, or Dr Lewis, the surgeon, to come talk to me please.  I need to know why we are still here.  Ok,, he says someone will be there to talk to me soon,, so I wait, and wait and wait,,, all the while they are cramming meds down Todd, trying to bring up his potassium and level out his blood sugars.  Then I mention he hasn't used the bathroom yet,, so they do a bladder scan and see he has 1600 ml of urine in his bladder! OUCH!  In goes that catheter,, *yes I laughed a little until I saw the pain in his face*

And to top it all off, I didn't get the expected email from our Missionary, computers were down at the library, yes I get a little stressed when I don't hear from him,, can't imagine what it was like when you had to wait for snail mail!!!  OIY

THE NEXT MORNING Dr M walks in and says "don't hate me for all the meds!" to which my response is, "where the hell were you last night and why didn't you come talk to me?"  he says he talked to Todd, and thought Todd would talk to me,,, HELLO how many people do you know are put under anesthesia and wake up able to carry on a conversation with details????  (our missionary emailed on tuesday this week,, yay one stress gone!)



*note our Dr's refer to me as a pitbull that is loveable, they know I need to know what is being done and why, and a copy of all orders and lab results, and they have actually said they love that about me!*

So Dr. M says we can go home as soon as Todd uses the potty!!!  So all day we are waiting for him to use the potty,, no such luck.  UGH! We get discharged with the condition that he has a catheter in for his bladder. Apparently the anesthesia and the pain meds they gave him during surgery "activated" the nerve damage in his bladder and it went caput! GREAT!  And we have instructions to go see a urologist ASAP... ok so now I am upset because they are sending him home with a catheter, anything could happen.,, and we are in a completely different state.. *please don't tell me we need to move, heard that enough*  I realize they send people home all the time with catheters, but they are usually in the same state,, So after much crying, threatening to leave him in st George on the street, and finally calling in reinforcements of his MOM, *THANKS MOM!*, he agrees to stay in town at a hotel until Thursday.

Thursday, we go to the urologist, tell him what's going on, and he does what has to be done,, fills todd's bladder from the outside, takes out the catheter and the pressure is on to see if he can pee on his own!,, I start chanting "push it out, let it flow,, gooooo peeee!, the urologist laughs so hard, todd glares at me, I just keep chanting and for added assurance,turn on the tap at the sink in the room!  PEE DAMM YOU!

FINALLY!! WE HAVE PEE!!!  hahaha Todd threw his hands in the air and says "I'm a big boy again!!!"  I laughed so hard.  He wasn't able to completely empty his bladder, but we now know this isn't permanent damage as of yet.  WHEW! Not sure he could handle one more thing breaking on his poor body.  So the dr sends us home with disposable catheters that he has to use in the morning and at night,, and if there is under 200 ml of fluid or less that is drained this way, we are good to go and we don't have to go back to the pee pee dr!!!  Start praying peeps!!!



Then we head to the Nephrologist,  *seriously thinking of nursing school at this point!* And Dr M and Dr L send us to the Dialysis center down the hall,,

Where we are introduced to our awesome Dialysis Nurse, Erma, and she gives us the low down on what to expect and when to come back for lessons on how to do this at home!  Dr L comes in and says,, "let's do a treatment now,, we are worried still about his potassium," Ummm hello,, 4 day old catheter for dialysis here,, it's a baby,, hasn't healed,, Erma doesnt want to do this!!!!  Dr L says do  a baby baby treatment, so she does.. YAY first dialysis treatment done.. This bumps up Todd's medical status to be eligible for medicare. So that on top of his insurance, we are 100% double covered.

We grab a bite to eat and head home!! 



I seriously want to collapse.  I am completely and utterly emotionally drained,, I can only imagine how Todd feels.  A huge thank-you to Sabrina who more than willingly took Levi, for what started out as over night, and changed into a week long sleep over!!! To Gwen who checked on our dog and our house, Aubree who grabbed the mail for us, and did whatever else we needed her to do while we were up there,, To Todd's parents who sat with me during surgery, and recovery and who chuckled at the cna when he dared roll his eyes at me, because he apparently does Not know me.. *foolish little boy*. To all of you, who keep me sane, who check in, who let me know you are thinking and praying for us, for everything.

Our next step is to do our homework that we were given on peritoneal dialysis, and pass the tests, then start at home dialysis on a daily basis once the catheter is healed and secure. Todd says he can feel the tube flipping around in his stomach sometimes,, I compared it to an early pregnancy movement,, he compares it to spiders,,, I'll stick with the early preggo movements thanks!

 Can I just say if you're reading this, have diabetes and not taking care of yourself properly,,,, Shame on you for putting your family and loved ones through that. 

So here we go,, onto the next step of our journey!


Wednesday, February 5, 2014

Stage 5

We were in St George yesterday for Todd's monthly check ups with his dr's.  The first appointment was this a rehab therapist that taught me how to massage the lymph nodes in Todd to help them release the fluid that his body seems intent on holding ransom!  I'm excited about this because it's one more thing that can help keep his heart healthy and pumping!!  YAY!!!

We then met up with our two girls and had lunch with them before our next appointment.  We both love that these two will come meet us whenever we are in St George.  In fact we tend to get in some serious trouble if we even think of making a quick  trip up there without calling them and letting them know.

Every time we go up to see our Nephrologist he has an entire panel of blood work done. These tests tell him how well Todd's kidneys are working and how well he is maintaining and looking after his diabetes.  One of these tests is to see the GFR.

 http://www.articlesbase.com/health-articles/what-is-gfr-and-why-is-it-so-important-in-kidney-disease-3394266.html?utm_source=google&utm_medium=cpc&utm_campaign=ab_paid_12&gclid=COfUj4yBtbwCFeg-MgodVF0A9A  

you can just click on the above link, this article explains better than I ever could, what the GFR is.

You want your GFR to be about 120-125 milliliters per minute of fluid intake and output *as I understand it, this is the amount of fluid your kidneys are "cleaning" per minute.I could be wrong,, it's happened before, although I don't believe it was ever documented, so there is no proof! ;-)*

Last month Todd's GFR was at 21,, it needs to be under 20 to be considered for a transplant, so that is what we were hoping for this visit.

Be careful what you wish for!!!   13.. yep his GFR is 13.  Which put him in stage 5 kidney failure.  I don't think there is a stage 6 people!!  NO BUENO!

Dr Leon, who we absolutely love and completely trust,  explained it to me like this,,, "we wanted to do it a little slower.  Think of it as landing a plane,  you want a nice smooth, bump free landing,, instead your kidneys went 'look!! AN AIRSTRIP!' and did a complete nose dive right to the tarmac."

He sent a referal into the Kidney Transplant Team immediately, and we are expecting to hear from them in the next week. 

He talked to us last visit about the different options we have for dialysis.  There are two main types, there's  hemodialysis where you go to a dialysis center and sit for 4 hours, 2-3 days a week and get hooked up to a machine that removes all the blood from your body, cleans and purifies it, and puts it back in,, sounds pleasant doesn't it?  This can be really hard on your heart.  Here is the internets definition:

blood passes from the patient's body through a filter in the dialysis machine, called a "dialysis membrane." For this procedure, the patient has a specialized plastic tube placed between an artery and a vein in the arm or leg (called a "gortex graft"). Sometimes, a direct connection is made between an artery and a vein in the arm. This procedure is called a "Cimino fistula." Needles are then placed in the graft or fistula, and blood passes to the dialysis machine, through the filter, and back to the patient. In the dialysis machine, a solution on the other side of the filter receives the waste products from the patient.

Then there is Peritoneal dialysis.. which uses the patients own body tissues inside of the belly (abdominal cavity) to act as the filter. The intestines lie in the abdominal cavity, the space between the abdominal wall and the spine. A plastic tube called a "dialysis catheter" is placed through the abdominal wall into the abdominal cavity. A special fluid is then flushed into the abdominal cavity and washes around the intestines. The intestinal walls act as a filter between this fluid and the blood stream. By using different types of solutions, waste products and excess water can be removed from the body through this process.

This second type is done at home, after the catheter is put in and healed, you go in and they teach you how to hook up to a machine and you do this before going to bed at night.  You get to sleep through dialysis.  You do this every night.  This is the option we are doing.

Todd will get a dialysis catheter put in, we are hoping, within the next two weeks, and then after there is a good seal of scar tissue around it, about 4 weeks after the surgery, we go in and get set up with a machine, tubing, and all the equipment we need to do this at home.  Scary,,, kind of.  HOWEVER, being as our dr's are in St George, and we can't switch dr's in the middle of trying to get disability, this is an excellent option for us.  Even Dr Leon said Todd is a prime candidate for this type of dialysis.

So now we are waiting for phone calls from the Transplant team and the surgeon who will place the dialysis catheter in Todd's abdomen.

When we meet with the transplant team they will give us a list of criteria for potential matches for a kidney.  I know I plan on going and getting tested asap. (Please know, we are not asking any one to go out and be tested. I have had several people call me, or come up to me and ask what the criteria is for a match, and I just want to put it out there that I will let them know as soon as I do.)

Our boys, bless their hearts, all said they want to go get tested too. To which I looked at Jake and said, If that is what you really want  to do and the dr's say ok you are healthy enough to live with one kidney, then ok.  Todd and I both turned to Andrew and Adam and gave a stern "NO FREAKING WAY are you two getting tested!'  *these are Todd's two boys from his first marriage*, when they asked why, looking hurt and livid that I would say that, I explained that they are at such a HIGH risk of diabetes,, their father, maternal grandfather, and paternal grandparents, and uncles all have it,, they are going to need both their kidneys!!!

It seriously amazes me how Heavenly Father just gets everything to fall into place at EXACTLY the right time!!  I thought these auctions and fundraisers were not going to do much to help, make no mistake, I am beyond grateful for all the hard work, donations, time and effort that went into all the fundraising efforts!!  Words can NOT express how grateful we both are.

They ended at just the right time.  Todd was able to find health care that is $400 a month, with a $950 deductible, once that deductible is paid, everything else, including prescriptions, and transplant surgery, is covered for the rest of the year.  This health care went into affect on February 1 of this year.  So 5 days into it, and we have already paid close to $500 of the deductible.  After I pick up his insulin prescriptions today, we will be at about $7-800 paid.  Do you have any idea what a relief this is, to have that money there, knowing that is what it is for.. I don't have to worry about NV energy coming after us or threatening to shut off our power because I needed to get todd's insulin, or get his to a dr's visit?  THANK YOU THANK YOU THANK YOU!!!!!   

So now we wait!

 We get up in the morning,, say our prayers, thank our Father in Heaven for another fantastically wonderful day!, we ask that our missionary is protected and doing well, We do what needs to be done through out the day, we seek out opportunities to help those less fortunate than we are, *we are so freaking blessed!*, and we give thanks at the end of our day. And do it all again tomorrow.

We have seen over and over again that our Father in Heaven is taking care of us, He's got this!!  *although He seems to leave the cleaning of the house to me!  :-( *

Thank you to everyone for all your love and support!! We will keep you posted!



  

Sunday, October 27, 2013

Just another day in the life....

It's been a while since I have blogged, and for that I am truly sorry.  Things have been going relatively well since our last dr visit.  Alot  has happened.  I got a new job with Macy's, which is now full time and a 25 minute commute each way.  Jacob, our oldest son, got his mission call,, YAY! He is going to the Georgia Macon mission, he reports December 18.  He is so ready to go, and kind of feels like he is in limbo right now. And my sweetheart is not in need of new kidneys,,,, yet.

I am so blessed to have the best husband in the entire world!  He has transitioned well into a stay at home dad.  I come home from work and he gets up to greet me and make me dinner, if it isn't already waiting for me when I come home.  He helps out with laundry, and keeps Levi quiet when I have to go to bed early.  I came home a few weeks ago from work and Todd offered to make me a salad for dinner, so I sat down at the table and watched him work. (not being sarcastic here, I really enjoy just watching my man!)  He reaches into the fridge and I see him stumbling with his hands inside the fridge, I ask him if he's ok and he claims he is... then I watch as he begins to slice a cucumber.  Tears fill my eyes, he is using his hands as his eyes.  he is gliding the knife down his fingers and using his fingers to measure how big of a slice of cucumber to cut.  I mention this and he goes quiet.  He doesnt say anything.  I quietly get up and grab the cheese for him (it's pregrated), and he says "No, leave it, I can do it, I have to know where things are"

We needed to talk.

My strong, tough guy, all American husband had kept from me how bad his eyesight had gotten.  He didn't want to worry me or stress me out any more than necessary.  Apparently me waking up in the middle of the night three or four times to make sure he is ok was not a secret.  He tells me he can see shadows, that is all.  He can make out shapes on good days.  I don't know what to do for him or how to fix this.  We have seen a retna specialist, and he was getting shots in the eyes every 6 weeks, but at $1000 a pop, that simply can't go on forever.  We had stopped doing his right eye about 6 months ago because they were no longer helping it.

People that come over to visit just dont realize how sick he really is.  His kidneys are still failing, which makes him excruciatingly tired on an hourly basis.  He has days, weeks where he can not keep anything down, where it takes all his energy just to lift his head.  Then there are days where he seems perfectly healthy, still using a cane on  a daily basis, he goes about his day as if he is healthy,, although he still needs to stop and rest every so often.  I watch as he stumbles to the couch because his neck is going to give out.  I watch as he gets ever so frustrated that he can't do a simply thing like sort the laundry, or find a utensil in the drawer.   I hold him as he cries because he says he has failed me as a husband and a father.  I watch as our oldest boy asks his dad if he wants to go on a father/son date.. son's treat, and Jake willingly drives his father anywhere he needs or wants to go.  I watch as our youngest son runs and grabs his dad's blood kit so he can test his blood sugars, and I watch as Levi reads to his dad the numbers off the meter, and asks "what insulin dad, and how much?"

I watch as my husband gets sicker and sicker and all I can do is pray.... pray that there is some way we can fix this.. pray that he's not taken from me yet.  That is a thought that is the very frontmost part of my thoughts all day long, every day.  My daily silent prayer as I leave my house is "Please Heavenly Father,, Let him have a good day!, Let him be ok when I get home"

I truly believe that everything happens for a reason, Todd, the boys and I have all learned so much from all of this. I guess we still have more to learn.  I have never once said "why me,, why us,, why now?"  I have always thought, "Ok the Lord knows we can handle this,,, let's handle!"  and if it's not us, it would be someone else,, and honestly,, I wouldn't wish this on any one of you.


 Someone tell me diabetes is an every day disease, and it doesn't kill any more.  Someone tell me it's ok, they can take a shot after eating junk.  Someone tell me it won't happen to them.  someone tell me I DON'T KNOW!  Send that Someone to come stay at my house for one week.  See what diabetes does when you don't look after it. 

I just want someone to tell me everything is going to be ok and soon I will have my handsome healthy husband back. 

I was talking to a friend of mine about all of this and how I needed an outlet and she suggested I blog... DUH!  I'm certainly up early enough.  So this will become sort of like a journal for me... for those who want to follow along.  And if no body reads it... it will be for me. I need it.  I need to let my feelings out without putting more stress on my husband who has to put every ounce of his energy into healing himself.  I try not to let him see me cry, I save it for when I'm in the tub, or right now,, while he is sleeping and I'm headed out the door to work. He'll never know. I'll come home with a smile on my face and do all I can to help him.  He doesn't need my stress to stress him out.  so thank you for letting this be my new outlet.  {if any of you tell him what I'm saying on here I may disown ya! ;-)}