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Author Topic: A summer of sadness...  (Read 43477 times)
pelagia
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« on: August 05, 2009, 05:33:20 PM »

Dear IHD family,

Some of you will have noticed that I haven't been around much at all this summer.  It's not because I don't care about you!  I think of my IHD family often.  I miss your stories, humor and wisdom. 

This has been a summer of sadness for me.  My husband and I separated at the end of May after 33 years together.  It's not what I wanted, but I am trying to move on with my life. 

Much more difficult for me to accept right now is that, as of a week ago, my not quite 19 year old son Will is on blood pressure med. We knew his bp was rising a bit over the last school year, but the college health center doc gave us a wait and see. The link to PKD looms over us.  When he went to our doc last week for a full physical they measured protein in his urine.  The doc wants an ultrasound done right away, so I am taking Will to the hospital this Friday afternoon. I am praying that somehow the protein in the urine will be a coincidence and not an indication that something more serious is happening now.  Will had been training hard for a triathalon, and heavy exertion and emotional stress can both cause protein release, but perhaps not to the level they measured.  I don't have the lab results in hand and won't have them until Friday, which is frustrating.  I am worrying about my son's health and also about having a definitive diagnosis of PKD.

One of the most important things I have gained from participating in this community is a sense of how strong people can be during times of crisis.  It inspires me to stay strong for my own well-being and because my son needs my support. 

Please keep us in your thoughts and prayers.  I will post an update about my son when I have more news.





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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
twirl
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« Reply #1 on: August 05, 2009, 05:39:11 PM »

Pelegia
thank you for your pm's this summer -
I was so worried about how your son was handling your separation -
I found out I had PKD in college when I was 20
and I had no problems until many years later
I am praying for you
and thanks for planting a Cheryl flower
photo please
your dear friend,
Cheryl
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #2 on: August 05, 2009, 05:57:28 PM »


I am sorry about all the challenges life has thrown your way but I know you'll do your best to get through it. We are all here for you and care very much how you are doing.
With Will, all you can do is take it one day at a time. Please let us know how the ultrasound goes.
 :grouphug; :grouphug; :grouphug;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
willowtreewren
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My two beautifull granddaughters

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« Reply #3 on: August 05, 2009, 06:07:39 PM »

Oh, I am so sorry to hear this news. We ARE here for you, but from this end, warm thoughts and support seem so meager. I wish there were more I could do.

Please be strong.

 :flower;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
willieandwinnie
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« Reply #4 on: August 05, 2009, 06:17:31 PM »

 :cuddle; Linda, you know we are here for you and please, please let us know about Will. I say a special pray and keep you both in my thoughts. You have been through enough.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
Rerun
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Going through life tied to a chair!

« Reply #5 on: August 05, 2009, 06:24:33 PM »

Tell him to not let the door hit him in his TRANSPLANTED ASS on the way out!  OMG you SO don't need him.  Linda.... RUN.  His kidney won't last forever and you don't need to be his nurse and purse later on in life if this is how he is going to be.

                        :rant;      OK!  sorry~  I know it must be hard.

I hope your son gets the information he needs to keep his kidneys running for as long as possible.

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MandaMe1986
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« Reply #6 on: August 05, 2009, 06:38:38 PM »

Im so sorry... I am with Rerun.  :cuddle;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
dwcrawford
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Getting the heck out of town.

« Reply #7 on: August 05, 2009, 06:40:42 PM »

I have no comment about your husband except... well, maybe its what they refer to as good riddance.

But for your son, I'm so sorry.  I hope all is all right with him for a long time.  I hate when such young people have to go through these things. 
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
Wattle
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« Reply #8 on: August 05, 2009, 07:07:20 PM »

 :cuddle;  I am sorry Linda that your problems couldn't be worked out. After 33 years I am sure you both tried.

Stay positive for your son. PKD is nasty but you will both deal with "what will be". Sending hugs. xox   :grouphug;"
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Wenchie58
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Always carrying the big silly grin!

« Reply #9 on: August 05, 2009, 07:36:23 PM »

Sorry to hear of your rough summer.  Being there for your son is obviously your place right now.  Keep your chin up and a positive attitude.  I'm hoping for the best for you and yours.

 :cuddle;
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #10 on: August 05, 2009, 08:41:52 PM »

Thinking of you and your family.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
kellyt
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« Reply #11 on: August 05, 2009, 09:16:07 PM »

 :grouphug;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Jean
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« Reply #12 on: August 05, 2009, 09:49:59 PM »

 :grouphug;
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One day at a time, thats all I can do.
rose1999
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« Reply #13 on: August 06, 2009, 01:19:53 AM »

Linda, you know how sad I feel about your breakup but I didn't know about Will and I am SO sorry to hear that, neither of you deserve all of this grief.  You have been strong for me and for others on this board now we will be strong for you.   I still have issues but I am here for you, we can lean on one another.  As Rerun told me in another post - you can eat the elephant if you take it a bite at a time - such wise words, I will carry that thought with me and I hope you will too, we love you xxx
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petey
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« Reply #14 on: August 06, 2009, 04:04:02 AM »

pelagia -- you and Will are in my thoughts and prayers
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monrein
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Might as well smile

« Reply #15 on: August 06, 2009, 05:44:40 AM »

Linda, I hope you can feel the hugs and thoughts of strength that I'm sending to you telepathically at this moment.  I know that this is a really tough time and the worries about Will must be unbearable.
You mean so much to so many of us and I want things to be better in your world.  :flower;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
lola
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I can fly!!!

« Reply #16 on: August 06, 2009, 05:49:12 AM »

Linda, I am just heartbroken for you. I pray everything with Will goes ok Friday, we're here for you. xoxoxoxo :grouphug; :grouphug; :grouphug; :grouphug;
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kitkatz
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« Reply #17 on: August 06, 2009, 06:20:51 AM »

I can only give you hugs and offer my prayers for your life to calm down a little.  :grouphug;
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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Stopping to smell the bluebonnets

« Reply #18 on: August 06, 2009, 07:22:05 AM »

Oh I am so sorry for all of this! I will keep you and your son in my prayers.  :cuddle;
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Cadaver transplant April 29, 2007
Des
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« Reply #19 on: August 06, 2009, 07:28:40 AM »

It is SO sad to hear that someone can just stop being married after such a long time. My heart goes out to you. Please know that I wish you all the strength to go on. I hope and pray that your son is o.k.

Hugs
« Last Edit: August 06, 2009, 10:26:34 PM by Des » Logged

Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
cherpep
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« Reply #20 on: August 06, 2009, 08:20:08 AM »

I am so sorry that you are going through so much.  You have been missed here on the boards, and I'm sorry your absence hasn't been for good reasons.  My thoughts and prayers are with you and your son.  Hang in there, come back when you need to talk.   :grouphug;
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G-Ma
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« Reply #21 on: August 06, 2009, 11:31:18 AM »

I am so sorry and pray for you and Will.  God will take care of the other one in his own time.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #22 on: August 06, 2009, 11:38:08 AM »

I am hurting along with you.  But at the same time, I know the strength of the human spirit.  My caring thoughts are with you all the way, especially concerning your son.   Be assured that your IHD family is with you for the long haul. :grouphug;
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
paris
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« Reply #23 on: August 06, 2009, 03:18:20 PM »

Linda, I am so very sorry.  Your plate is very full and I wish we could be of more help to you.  I will keep you and Will in my prayers.  None of this is easy for him.  I can't imagine the pain and worry you are going through right now.  How are you?  Do you have family and friends to lean on right now?  You know you have all of us and we are here around the clock.  :cuddle;   Are you doing OK?   Come here any time you want to scream or cry.  Sending you lots of love   :cuddle;   :cuddle;  I am sorry.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
glitter
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« Reply #24 on: August 06, 2009, 04:01:44 PM »

I hadn't posted yet, not because I don't care, but because I could not think of anything that might give you comfort..my heart goes out to your son. and of course to yourself. Finding yourself in a position you don't want to be in sucks so much. 33 years is a very long time, I am flabbergasted. I will be thinking of you, and sending positive thoughts your way. I am very sorry your going through all of this.
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
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