Its beginnig to look alot like Christmas

Sorry its been so long since i've been in touch... things have been crazy.

1. Gretchen Kelly came up and spent Thanksgiving with me in CT - it was nice to see one of my oldest BFF's and for us to do a few updates to my Condo to prep for my Surgery, we also got all my new appliances in - i wanted that finished before surgery as well

2. Transplant surgery is January 5th at Columbia Prespyterian Hospital in NYC (Bronx 168th and Broadway).   My Dad, Sister and Step mom will be up here for the surgery so its been busy doing logistics for their travel etc..

3. Work has been crazy - trying to train someone as my temp fill in and to get as much organized and done as possible, i am very lucky to be working for WWE, they have been very good to me and i am greatful.

4. Travel to Louisiana for Christmas was as difficult as usual- Airlines dont understand Dialysis or the equiptment and dont want to help you carry/store the machine.. DELTA isn't a better airline with the merger and aren't any friendlier... unless you are crippled and in a wheelchair - you aren't sick or disabled needing assistance.  Makes me sad for other folks who aren't as hard headed and strong as I am to push back and get them to move out of my way.

5. I've been very lucky and feel very loved, i have several friends coming up to stay with me after surgery once my family leaves to help me get around, make my dr. appointments and to take care of me.. sometimes when you feel the worst ( the week after thanksgiving when I had pheumonia) and the lonliest and feel like you are in this alone, people surprise you... I have recieved some great emails, letters, phone calls, Saw some College/Sorority friends, Church Camp friends, and Best Friends more lately than i have in years and I am eternally greatful! It is really helping me get through this.

I also got some great unexpected thoughtful gifts (posted some pics on FB) and really felt the love when i most needed it... Thank you all for all the support.. .

Merry Christmas and Happy New Year.. .Here is to 2011, my new Kidney and My New Life...

Determination and Belief made this happen.. .now 3 weeks to go and I just need to hang on and stay as well as possible to prep for surgery.

taking it day by day

This was one of the best weekends I've had in a long time, I slept 2 nights in a row for 4 1/2 straight, it was a miracle... I  haven't really had much sleep since July when I had this Catheter put in and started Dialysis early August ..so that was a win and I take each little victory that i can get each day.

Just think in 2 months, i will not have this catheter in me causing pain and  maybe i will sleep, i can't wait to catch up on sleep - who would have thought sleep deprivation causes so many problems.

I got alot accomplished, Dad and my step mom Kathy's flights booked, Hotel rooms booked for family and donor, cable vision appointment made. With Dad being up here for 2 1/2 weeks helping take care of me, my closed captioning isn't working on my TV (only 1 1/2 year old) so Sharp said it was CableVision that needs to come out and fix due to the way they hooked it up.  Dad is very hard of hearing and I have supersonic hearing and dont like loud noises when I am sick or trying to rest...so it must be fixed.

I am also hoping to get all the kitchen and bathroom repairs done this week, so that it will all be done by the time I have surgery. So lots going on.

Work is crazy as usual, but they are being very gracious and we are interviewing for a temp to help fill in for me for a few months while I am on leave. Hopefully we will find someone soon.

I am happy to be off of work next week to visit with my friend Gretchen and try to relax and enjoy the holiday and look forward to all the new adventures 2011 will bring once I am well.

Happy Sunday,

M

GREAT NEWS! SURGERY IS SCHEDULED

We've got the greatest news ever, several friends  of mine had their blood work done at Columbia.


Two of them were potential matches, they told us they would look at both options and choose - they spoke to both and now have the surgery on Wednesday, January 5th at 8am.

We check in the Hospital at 6am.

My Dad, Kammie and my step mom will be up here for the week of surgery and then Dad will Stay and fly home on the 21st. Then my first cousin Justin will come up here for the next week then Gretchen will come up the week after that. I am working out the schedule for the weeks to follow after that until I am able to drive since i have to go back n forth to Columbia for check ups for the first few months.

My donor, will need to be off work for up to a month and take it easy for that time so the healing will do well.

I will be in the hospital up to 5 days or so and hopefully my donor will only be in the hospital for 2 days.

I am scared and excited at the same time.

In the process of finalizing hotel reservations, airline reservations, and logistics since i will not be driving and having to get family and caretakers to and from airports to my condo etc... but it will all work out.

I am very thankful and now just focusing on staying healthy, raising money to help cover costs and looking forward to the beginning of the rest of my life - I will be off dialysis and healthy(for me) thank god after this surgery.

M

Catching up

Lots of things have been going on -

Filed a formal complaint with Continental Airlines - They wouldn't allow me to board the plane in New Orleans with the Machine - so I had to sit at the gate on the cell phone and have corporate continental get a disability representative to the gate to force the desk agent - Susan Frasier (i will never forget how rude she was in the New Orleans Airport) to allow me to board the plane- even if I pre-registered this machine.

Other than that things have been pretty calm-

My blood pressure is outta control, but they feel that is due to the weight gain - 13lbs so far from each night dialysis is straigh calories and sugar water going straight into my belly- i get more preggers looking by the day- so i am trying to cut down on some calories but the doctor said it wont help that much since they are filling me with the calories while i sleep.

As for sleep, thanks to the Vallum- I actually am getting 5 hours a night of sleep. The sleep deprivation is getting a little better so that is taking the edge off, but the pain is still there all night long until this Catheter comes out.

I am just taking it day by day.

Traveling with the Machine and Life as we know it.

Sorry its been so long..

Things are crazy---  my office reorganized recently so my work load doubled as well as my direct line working with more employees. they are all very nice, its just inconvenient timing and a lot of stress trying to maintain my normal work load and learn an entirely new segment without time for a learning curve..so good times.

Anyway - I recently took a Road trip to Oklahoma City and to Dallas.  Unfortunately I had connections each way and it wasn't fun!

Security was very nice at the airports- They've seen the machine, you just need to be aware you will be pulled to the side for them to open it and make sure you aren't stashing anything else into it.

The issue comes in when you talk to the gate agents and flight attendants... seriously they need attitude adjustments... do they really think someone wants to be treated sick and like they are a mutant just to be able to board the plane early.  Plus, they only offered help to folks in wheelchairs...what happened to Delta airlines? What made flight attendants, tell someone with a pre-registered machine and a doctor's note tell me that unless its oxygen they were throwing it under the plane? Which of course i said, over my dead body, litterally since if you break that machine throwing it under the plane you can put my health in grave danger.
After several days and many connections of the same argument i made it to and from my road trip.

Delta isn't my first choice of a airline anymore- I will see on Sunday if Continental's flight attendants are in any better moods. We can always hope.

I am just taking things day by day trying to deal with work changes, dialysis, travel and just life as we know it...

Update

Just wanted to reach out and say hello!

I know I am not great at keeping up with this, but its been a very trying couple of weeks.... so here is the short of it

• Hernias- Not sure if we have them or not - 3 Doctors are discussing if i do or don't and if so when to operate. We agreed yesterday just to do a few cat scans to determine for certain and make a plan.
• Work- We've had a reorganization and I've inherited several new job duties - so this is kinda stressful when i am trying to deal with all the new health stuff - I am learning a new job set... it will be great once the transition is over
• Travel - very nervous for Thursday
• I travel for the first time with my Dialysis Machine. Delta hasnt' exactly been helping the anxiety- they had to have machine dimensions, a doctor's note and said they will see if they let me bring in on board.  According to Baxter, we can't check it since they throw luggage and it may break and that will be very detrimental to my health, so pray that Thursday goes well so i can get to work on time and not end up being arrested at LaGuardia or Atlanta for trying to bring a Dialysis Machine on board and they mistake it for a bomb.
• Donors - I have a couple of people with my blood type being tested right now, so lets keep our fingers crossed that they are good possible matches and if so that they are willing to schedule a surgery for me to get well... I am grateful that folks are willing to get all the tests run - believe me its nerve wracking.

Main things now to focus on for me is to try and control my blood pressure , its too high and they are worried, we all agree its stress of me trying to keep up with a normal work load and life and sleep deprivation.

I am still not sleeping well since I hurt each night on Dialysis from either Drain Pain or Hernia's - that developed due to the Catheter and Dialysis- luckily we will know for sure in  2 weeks and can try to fix it and the doctor gave me Valium to help me sleep since its been 6 weeks of maybe 2 hours a night and he thinks that is causing more problems.

I am in good spirits, a little stressed, and taking it day by day.

I am lucky that i have great friends and even strangers offering their kind support and that especially its football season to keep me occupied so lets hope the LSU Tigers try to learn clock management and offense and that the Saints get a better kicker.

Happy Tuesday.

Melissa

Checking In- Update

Its been an interesting week or so -

• Met my surgeon at Columbia - Love him! Dr. Guarrera is great.
• Have a major infection in my left arm from my Iron IV permeating the vein- on antibiotics for that one
• Dialysis still hurts and is getting worse, but atleast we know the cause of it
• I have a new Hernia on both sides of my pelvis
• They said premie babies are more prone to these and they formed due to the dialysis - stretching my abdominal area and causing the weak points to blow out
• The longer i do dialysis the worse it will get and the more pain it will cause since we are upping the fluid
• Even if we remove the Catheter when I get a transplant, this hernia will not go away
• Next Steps-
• My Catheter surgeon, Nephrologist, OBGYN are all trying to get in touch with my Transplant surgeon to see which one of the following we will do
• Repair the Hernia at the Same time as transplant
• If we repair it first, will the transplant tear up the mesh repair
• If we wait to repair until after transplant, will the anti-rejection drugs cause a problem

So its never boring and I am just trying to take it in stride.

I've had some very good friends get tested at Columbia (so here's to hope) and I am thankful for everyone who got tested last year at Yale,  I don't think folks really realize how much it means to me or anyone in this situation for folks just to try even if it doesn't work out... its the most unselfish gift someone can give- life and i wished I was healthy enough to pay it forward.

Hope you all have a nice weekend.

xoxo,

Melissa

keep on trucking

It was a rough weekend for Labor Day - Labor is the correct word for it, I felt like i was in labor and I don't even know what that feels like, but for all you mothers out there, god bless you!

Seriously, i need this pelvic pain to go away.  I know they are worried when they told me to take some advil to help since i haven't been allowed to take Motrin/Advil for 5 years. ( its bad for Kidney patients).

We are just going to keep watching it and hopefully it will go away, if it doesn't let up, we will open me back up to see if there is a hernia forming or if the end of the catheter needs to be moved around. Either way, the end is near my bladder and uteris so its not very comfortable.

I made flight reservations for Christmas and for OKC/Dallas work trip this week, so it will be interesting for me to learn to get on and off a  plane with my dialysis machine- The case is large and heavy so I may go buy a cloth suitcase to carry since i have to take it on board and its 30lbs without the case. As for the fluids etc, i will just need to ship those with exception of one bad that needs to be put in my checked suitcase... i think its going to be an adventure.

- I will go check in at the Dialysis center tomororw - I still get Iron in the IV each week and Epo shots to help try to make new red blood cells. Plus they are increasing my fluid each week to stretch my tummy - i feel full 24/7 and my tummy is so tight- so kudos once again to all the mothers out there.

- I also go to Columbia again on Friday. I meet with a Social Worker and the actual Transplant Surgeon this go around since i didn't get to meet them when i was in last week.

_ I also go to the Dentist again next week to finish my implants and veneers from all the dental work i had to do to keep on the Transplant list - plus i need to get another mamagram to stay on the list.

It keeps me busy with work, but i know i can do this and just keep on trucking- ready to relax on Saturday with a dose of College Football - so I am still the same no matter what.

Hope everyone else is doing well.

checking in

I know I am bad at this and sometimes forget to write, but i am trying to catch up now

1. Went to Columbia Prespyterian Hospital last week - I am now registered on the NYC Donor list and I love the hospital.
     Its in the Bronx/Washinton Heights area of NYC which is an older area, but the people were nice and I love the doctors and the coorinators which is a huge leap from the coodinators that I dealt with over the past year at Yale.  I felt stressed every day at Yale and uncertain if they were doing more damage than good.


2.  FundRaiser
      Jimmy Booth and the Norwalk Jaycees held a small fundraiser last Saturday night, I was happy to get $750 out of it and i am putting that away to help pay for Hotel rooms in NYC for when I do find a live donor so their family can stay. I know that is a day and 1/2 but its a start

3. Dialysis
      this is still going pretty rough- i am getting better at hooking up to the machine nightly but i am still not getting more than 2 to 3 hours of interrupted sleep nightly. I am exhausted!!!!
    The machine is noisy and I still hurt. The good news is that I only hurt now on 2 to 3 of the 5 sessions so hopefully that is a good sign. If it doesnt improve in 2 weeks, they may discuss opening me back up to look to see if a Hernia is tearing or if something else is going on. Please pray that they don't have to re-open me.

4. The Scare
     Yesterday at work when I was in the restroom, my cap on my catheter came off and hit the floor.  This is a bad sign when your steril cap is now on a dirty company floor and your catheter is exposed to the air which is a direct line into your insides. i didnt' have a choice but to put the old dirty cap back on and hope that i didn't contaminate my entire body.   I called the Dialysis center and they told me to get home immediately, scrub my cath and add a new iodine cap. Then 5 minutes later, put on a new cap and don't plug up that night.

So this morning I was at the Dialysis center bright and early where they removed the half of my catheter that wasn't surgically implanted and replaced it then hooked me up to an IV of antibiotics to be safe.

Lesson learned keep caps and alcohol wipes in my purse just incase it happens again.  The good thing that came out of it was i got a full 8 hours of sleep for the first time in 2 1/2 weeks!


So that's what's going on in my world other than working full time and missing sleep.

Talk soon, M

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