Dialysis at Home

As many of you know, I now am doing Dialysis in the comfort of my own home.

It has been an adventure to say the least- The Machine isnt' that hard to work, its just the process prepping for the machine to work and the steps i have to take to plug up and to make sure i am not contaminating my port or the bags of fluid that go into me.

I didn't mess it up and i've done 3 days of Dialysis so far.

I have 2 big issue's with it so far :

1. The Pain in my Pelvic area - it is excrutiating
      I know I've blogged about it before, but geez i need it to go away- this catheter needs to quit tap dancing on my Uteris.

2. The noise
    As many of you know, I am a very light sleeper so the pulsating noise and the beeps keep me up at night.

I know i will become asjusted to the noise and it will be like a noisy airconditioner that you just get used to, but i am hoping and praying that this pain lets up.  It happens each time I drain and that is 5x a night so I am up curled up and screetching in pain every 1 1/2 hours - so sleep hasn't been happening much for me.

All i can say is that is this is the worst of it, i can do this until I find a match...

Now i need to learn how to travel with all of the equiptment - The Machine I will carry on, but each day i use 8000 ml of fluid plus all of the bandages, caps, mats, disenfectants, tubes and machine cartridges that must go with it.  I know i will have to ship all of that so we will see how that goes. I travel the last week of September again for work to OKC and Dallas.

Hope all is well with you, more later,

Melissa

Dialysis Training Days 1-3

Well, I am on day 3 of Dialysis training and its been a gem let me tell you.

There are 2 types of training they are doing - Manual (with an IV stand and solution bags) and then with the Machine. You need to learn both types incase you drop your machine, power outages, etc..

Day 1 and 2 were manual and it was pretty easy for me to pick up and I've been doing it by myself.
Day 3- first day on the Machine.

Normally they train in 8 days and send you home to try manually for 1 month before they even show you a machine. I am doing it all in 5 1/2 days both Manual and Machine.

1. They are filling your belly with fluid that isn't normally there - so its stretching. It takes 9 months for a belly to stretch to accomidate for a baby, so imagine us doing an expedited dialysis training in 1 week - not a great feeling.   I can't handle as much fluid as they would like since i get nascious, very bloated and feel smothered and having trouble breathing. They think its a space issue and think that maybe my heart surgery from years before that there may be a hernia where my drian tube/incision was...so more complications to monitor.

2.  Pelvic Pain - The end of the catheter in my belly is by the bladder and uteris. So when we are draining all the fluid out of me (when the fluid is dwelling or sitting inside of me, the dialysis is occuring) at the very end the pain in my pelvic region is so severe that i am hunched over, white knuckled, and teared up. Once we turn off the drain it takes a few minutes for it to subside. They say not all patients get this, but due ot the location of the catheter it happens and it should subside eventually over time. Men don't have this problem since their privates are outside their body and they have more room inside to do PDialysis. Lucky them.

So, we will see how it goes moving forward.

Save Seffens Foundation

With all of these changes in my life, I decided to not sit around and let this happen to me, but for me to try to be proactive and  fight this disease and work to help myself.  One thing I've learned with all medical problems and professionals is that no one will advocate for yourself as much as you.  We must do everything we can to learn all the facts and get as many 2nd opinons as possible.

In saying that, I worked with my friend Josh and his law firm to set up and LLC, The Save Seffens Foundation in order to help get the word out to find myself a donor, raise money to pay for flights/hotel stay if the donor or their family didn't live near me, and to cover any thing else my insurance will not cover whether its the Dialysis or the actual transplant surgery.

My long term goal is to hopefully be able to change the name to the Seffens Foundation once I am well and continue doing this to help others throughout the years to come... There is strength in numbers and all of us whether its PKD we are facing or some other problem, we all need help.

Happy Monday, Melissa

Surgery - to prep for Dialysis.

Everyone has asked that I start a blog to help not only my friends and family but maybe others with PKD learn what day to day life is like so her goes.

I am currently taking a lunch break and counting down until I can go home and go to bed, its been an odd week and a half to say the least.

Last Wednesday, I had surgery to begin my long journey to Dialysis. I chose to do Periteneal Dialysis and they had to laprscoprically insert a catheter in my abdomen to prep me for my new Journey.

The first 2 days after surgery were fantastic, the Friday hit and i felt like I was cut off at the knees and finally realized that my life as I know it was over.  I can't shower, must use baby wipes, need assistanct to wash my hair and have tubes (noticably) sticking out of my abdomen and i look pregnant or like I swallowed a basketball from the surgery.

Yes, I know swelling will go down, but I was nieve to think that it would be so easy and things wouldn't change.

My advice for anyone else, ask more questions, ask to see what the catheter looks like so you won't be as shocked as me to have big plastic valves and 5 inches of tube on you that you weren't expecting...

Life is a Journey and I imagine this will get pretty interesting =-)  Melissa