HELLO from Alaska

[CHeatherS]

Oh so glad to make it here, have struggled to get registered.  And you know, with BUN brain, not easy figuring things out. 

Here's my story.  I have PKD, and was hoping I could make it through life without failure....  taking very good care of myself, diet, exercise, living as natural and healthy as I could.....  kind of bragging as I went that I have gone beyond all my other family members.  But alas, last year PKD  got me.   

My doctor suggested PD, so I put it off until I was about 7% GFR, and got the surgery, which sure wasn't a walk in the park.  Then I had to wait for a "slot" to get started training, and healing.  I started training last week, and had a couple days at the clinic, and then home on my own.  I think I have it down, but my gosh......  first I have to radically change my diet, and now I feel as if my whole live revolves around damaged kidneys.  Yesterday I couldn't find my pulse or blood pressure.  Looks as if I took off too  much fluid.... but not sure.  So I am using the weakest solution. 

I look forward to looking through the posts and see if I can find some encouragement, and support.  Perhaps be of some support myself.     It's been a very very hard year.

Blessings all

Heather

[willowtreewren]

Welcome, Heather!

 

Yep. dialysis sucks....and sometimes sucks the life out of ya!

But this is a good place for fellowship and information!

Aleta

[Bajanne]

Welcome to our community, Heather!  You have chosen the right place for information and support. And I glad that you found us early in your journey.  You have an entire family here, caring and sharing    Just keep on reading and keep on posting, so we can know how it is going with you.



Bajanne, Moderator

[Jie]

Welcome from Alaska. There should not be a lot of diet restriction for PD except for not overeating phosphorus rich foods. Which part of Alaska you are from, Heather?  Take care.

[CHeatherS]

Hi Jie, I am in Anchorage, where are you?  Thanks all for the warm welcome......  needless to say I am quite overwhelmed with dialysis.....  once my brain starts working, if it does, I may have a ton of questions.

Blessings
Heather

[galvo]

G'day, Heather, and   

[MooseMom]

"BUN brain"....that about sums it up.  I like that.

You have had a crap year, haven't you?  Well, you have come to the best place on Planet Earth for support, advice and encouragement.  We have lots of people who do PD who will be glad to answer any questions.  Not only that, but this is a good place to just come and curse your bad luck or be thankful that dialysis exists, whichever your mood of the day may be.

[boswife]

welcome to a great place     Your going to feel so much better soon, and be able to share lots of experiences, good or bad, and be welcome either way    Alaska is where i want to travel if we ever go on a cruiz.  Mabie a nxStage cruize commen up and we'll be in your part of town   Hope you feel better soon...

[Poppylicious]

  Heather.  Lovely to 'meet' you.

 

[Rerun]

Hi Heather, and welcome to IHD.  I'm sorry you had to finally start dialysis.  I think PD is a good choice to start.  Just be very clean and you should do fine.  At least it is light for a while up your way.  The light days should help.  I know it does me.  I'm in Washington State.  Just a little below you.

Rerun, Moderator    

[Jie]

Hi Heather,

I am from SE Alaska. Unless you are with Liberty, you must be with Joan's group. I used to have Julie and then Becky as my nurse. Since I did not travel to Anchorage very often (only about 2-3 per year), I used seeing Cat (former director, now a travel nurse) every month. You will do well. Alaska PD patients are doing better than nationwide.   

[AguynamedKim]

Sorry you've had a bad year but glad you found us.  Hopefully the site will provide you with answers on how to keep your dialysis as optimum as possible.

[edersham]

Heather,

I live in Anchorage too, but I spend winters mostly in Arizona. I'm no expert on pd but I have learned a lot about the transplant process and its twists and turns. If that is your ultimate goal I can answer a lot of questions. Has ESRD made you more susceptible to cold weather? I went from the ultimate tough guy to never being warm enough during esrd to OK on dialysis and then back to cold averse after transplant.

Good luck
Ed

[CHeatherS]

Thanks all for the wonderful welcome!!!

Ed, wow, yes, it's been a hard couple of years with the long cold winters.  I have had to go to Hawaii in the Jan or Feb just to thaw out my feet. 

I have been on the transplant list out of Seattle Swedish for a year and a half.  A friend offered a kidney last April, and she is a match (she lives in Indiana) but then in Sept they decided that I needed to do the series of Hep B shots as she had had Hep B in her past.  They also said that her bp was too high and she needed to get it down.  She lost about 13 pounds and went on one bp med, and they just retested her with a 24 hour bp halter monitor, so I am anxious to see how that goes, although I am 62 (didn't feel over 45 until this last couple years) and she just turned 60, so I am concerned for her giving a kidney, but trusting that the separate donor team will be thorough. It will be hard to travel to Seattle for surgery, but it would be easier to do it by appointment rather than a phone call where you have to run to the airport.

I had a hard night last night.  I am usually a pretty calm and collected person, but I felt so anxious in the night, and short of breath....  this has got to get better.  I am feeling rather discouraged right now. 

Have you received a kidney yet?  Where are you in all of this? 

Blessings
Heather

[breezysummerday]

Hello Miss Heather!

I am in Anchorage.
Welcome to IHD!  I love this site...it has provided me with so much information, I feel well armed for that day when my husband gets 'the call'.
Maybe one day Anchorage will be able to support transplantations!  In the meantime, we'll have to do the 'run to the airport' thing for Virginia Mason.

 Looking forward to your girlfiends' testing results....I would be anxious too. Hope it's all positive!

deborah
 

[edersham]

Heather,

I am one year post TX(Mayo Clinic Phoenix).  I was unlucky in that my kidney failure happened very fast but blessed because I had a friend in Oregon who offered to donate immediately when she heard and was not only a match but walked through hell and high water with some of her family members(not her husband, he offered to donate too) to keep her promise to be my donor.I only had to do dialysis in center hemo for three months but that was more than enough for me. We are both doing very well a year later except for me having the usual assortment of drug side effects. I hear good things about the deceased donor wait times for Alaskans and the NW in general and about the transplant centers in both Seattle and Portland. Mayo in Phoenix is a wonderful place and their average wait time is short but that number is probably biased low by the fact that 2/3 of their transplants are  live donors. You are in a good place to get a TX soon one way or another but I know the feeling of being on hold and not knowing what is coming next.  Just hang in there and picture waking up in the recovery room 3 hours after TX surgery and having to take a moment to realize whats different and then it hits you that you already feel better than you have in a long time which is what happens to most of us.

Summer in Alaska isn't far away and hopefully so is your transplant
Ed

[CHeatherS]

I just want to thank you all again for the warm welcome.  Sorry I haven't been responsive.  It's been quite a roller coaster here learning the ropes with the PD exchanges 4 times a day.  Whew.  And I can't sleep at night at all.  So I don't know what the deal is.  Will pose a question on the main board. 

I hope to get to know you all, and interact more.  First I have to find where my brain was stored away... I know I had one.