I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
November 21, 2024, 07:07:02 PM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Introduction
| |-+  The IHD Family - Our Members
| | |-+  A summer of sadness...		 0 Members and 1 Guest are viewing this topic. « previous next »
Pages: 1 [2] 3 Go Down Print
Author Topic: A summer of sadness...  (Read 43475 times)
Romona
Elite Member
*****
Offline Offline

Gender: Female
Posts: 3777
« Reply #25 on: August 06, 2009, 06:01:34 PM »
 :grouphug; I am so sorry you have all this to deal with. Praying that you find positive news for your son. I wish I knew how to mend your heart.  :'(
Logged
kimcanada
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2802


WWW
« Reply #26 on: August 07, 2009, 06:40:19 AM »
Linda, I am so sorry to hear about your ultra sucking summer, I will pray that your son has just hit a speed bump and will be back to normal soon...

Linda, breaking up is everywhere, but I can tell you that when it happens to a woman like you, the woman always ends up with a very full and loving life, you are well rounded and interesting and beautiful, grieve and then start living, I am sure you will be fine :cuddle;

Kim
Logged
**********************
**********************
http://www.kimhoben.com
**********************
**********************
thegrammalady
Elite Member
*****
Offline Offline

Gender: Female
Posts: 3788
« Reply #27 on: August 07, 2009, 10:03:23 AM »
hoping that somewhere in this mess you will find some good news.
Logged
s
......................................................................................
If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
pelagia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2991
« Reply #28 on: August 07, 2009, 11:35:08 AM »
Not sure when the doctor will call, but I saw the cysts with my own eyes.  Couldn't miss them.  It was kind of surreal because the moment the tech put the ultrasound wand to his skin the image of a kidney with what seemed to be a dozen cysts was on the screen.  In a split second he went from "don't know" to "no question."  :'(

He's going to a concert tonight with friends - thank goodness...  I am going to have to think of something to do because otherwise it is going to be a long night.  I need to shut my brain off.

Thanks again for your kind words and support.
Logged
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
kimcanada
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2802


WWW
« Reply #29 on: August 07, 2009, 12:12:25 PM »
 :'(  :cuddle;
Logged
**********************
**********************
http://www.kimhoben.com
**********************
**********************
monrein
Member for Life
******
Offline Offline

Gender: Female
Posts: 8323


Might as well smile
« Reply #30 on: August 07, 2009, 12:15:10 PM »
Linda, I am  :'( here with you.  So very sorry.   :cuddle;
Logged
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
paris
Member for Life
******
Offline Offline

Gender: Female
Posts: 8859
« Reply #31 on: August 07, 2009, 02:59:54 PM »
My heart is hurting for you.  I don't have enough words to tell you how upset I am for you and Will.  I think there are lots of Moms here that are crying with you.  I am sorry.    :cuddle;
Logged


It's not what you gather, but what you scatter that tells what kind of life you have lived.
dwcrawford
Member for Life
******
Offline Offline

Gender: Male
Posts: 5315


Getting the heck out of town.
« Reply #32 on: August 07, 2009, 03:50:51 PM »
Here is hoping that your summer of sadness will soon turn into a fabulous fall and then winter of all happiness.
Logged
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.
Zach
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4820


"Still crazy after all these years."
« Reply #33 on: August 07, 2009, 03:56:26 PM »
Thinking of you.
 :-*
Logged
Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
willowtreewren
Member for Life
******
Offline Offline

Gender: Female
Posts: 6928


My two beautifull granddaughters

WWW
« Reply #34 on: August 07, 2009, 05:46:37 PM »
 :grouphug; :cuddle; :grouphug; :cuddle; :grouphug;

There are no words, except I'm so sorry.
Logged
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. :)
Sunny
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1501


Sunny
« Reply #35 on: August 07, 2009, 05:50:08 PM »
I am so sorry to hear about your son. It must be so difficult for you because we always want to protect our children from the lousy things life brings. I hope he will become well educated in the issues of PKD so maybe he can prolong the health he has. With a loving mother like you, he has a lot going for him. I am sorry about your marriage too. So much to bare all at once. Hang in there.
Logged
Sunny, 49 year old female
 pre-dialysis with GoodPastures
del
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2683


del and willowtreewren meet
« Reply #36 on: August 07, 2009, 06:17:46 PM »
 :cuddle; So sorry to here about your marriage - try to look to the future. Sorry to hear about your son as well.  Hope he has a long time before he has to deal with the results of kidney failure.
Logged
Don't take your organs to heaven.  Heaven knows we need them here.
willieandwinnie
Elite Member
*****
Offline Offline

Gender: Female
Posts: 3957
« Reply #37 on: August 07, 2009, 07:08:36 PM »
 :cuddle; Linda, I am so so sorry. I'm here if you need to talk.  :cuddle;
Logged
"I know there's nothing to it, but I want to know what it is there's nothing to"
pelagia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2991
« Reply #38 on: August 09, 2009, 07:29:48 AM »
I think Will is handling the PKD news reasonably well.  His uncle, who also has PKD, called him last night and I overheard part of the conversation.  There was a bit of humor about being part of a "special club." 

I've printed off some info from the PKD Foundation website for him.  We talked about what is happening with the clinical trials.  He is going to try to double his water consumption based on the current research (as I posted in a different thread).  This seems especially important given that he is a student athlete and is prone to dehydration, which works to increase cyst proliferation. Even though the water treatment is only in clinical trials, I see no harm in upping his water consumption within a range that is still clearly safe.  He now knows what he can do personally to maintain the best kidney function possible.  His doc put him on lisinopril, which is one of the two bp meds being used in the Halt PKD study.  His bp is coming down into the low normal range. 

One lingering issue is that I still don't know why he has protein in his urine at this point.  The doc tried to call me late on Friday afternoon, but I was at a movie.  Hopefully I will speak with him on Monday.

There was a thread here on IHD a while back about getting adult child tested.  As much as I was opposed at the beginning to the idea of scheduling Will for the ultrasound, I now think it was the right thing to do.  You can't be proactive if you are in denial.
Logged
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
Jie
Sr. Member
****
Offline Offline

Gender: Male
Posts: 521
« Reply #39 on: August 09, 2009, 12:18:47 PM »
Sorry for your sad summer, Pelagia.

I think it is not a good idea to do PKD test for adult child, since we have not had a medicine to deal with it and it may have some implications for future health insurance. I tested it by myself in my mid-20s to confirm my PKD, but the result did not help me much. 
Logged
rose1999
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1893
« Reply #40 on: August 09, 2009, 12:24:50 PM »
Linda, just to let you know you and Will remain in my thoughts xxxx
Logged
pelagia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2991
« Reply #41 on: August 19, 2009, 06:54:15 PM »
Had a week of vacation and now it's back to reality.  My son is in the midst of a 24 hour urine collection, which will allow the doc to do a better assessment of his urine protein levels.  Hopefully I'll know something more by Friday.

Here's some good news - As luck would have it, my dad has a connection through a mutual friend to a senior physician and PKD researcher at a major university hospital.  I had a chance to speak with him today.  He is optimistic that treatments and therapies to significantly slow cyst development in PKD are not too far off.  For now he suggests that we focus on controlling my son's blood pressure (130/80), keep him very well hydrated (see this post about water and pkd: http://ihatedialysis.com/forum/index.php?topic=15144.msg267490#msg267490), and find a nephrologist here in Virginia who keeps up with the research and clinical trial results.  All of this is doable. 

Now I am feeling optimistic too.  :flower;
« Last Edit: August 19, 2009, 06:55:35 PM by pelagia » Logged
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
willowtreewren
Member for Life
******
Offline Offline

Gender: Female
Posts: 6928


My two beautifull granddaughters

WWW
« Reply #42 on: August 19, 2009, 07:00:31 PM »
I'm glad that there has been a positive upswing.

 :grouphug; :grouphug;

Wishing you the best.
Logged
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. :)
lola
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2167


I can fly!!!
« Reply #43 on: August 19, 2009, 07:05:52 PM »
Linda controlling the BP is so huge to helping slow things down, Dani's Dr also has seen BP meds can help lower protein in urine also. I hope things go well for Will, and also for u as I now this is stressful on you. xoxoxoxoxox :grouphug; :grouphug; :grouphug; :grouphug;
Logged
www.caringbridge.org/visit/ottomachado
willieandwinnie
Elite Member
*****
Offline Offline

Gender: Female
Posts: 3957
« Reply #44 on: August 19, 2009, 07:14:33 PM »
 :flower; Linda, that is some good new. I will keep you and Will in my thoughts and prayers. I am happy to hear you had some time off.  :cuddle;
Logged
"I know there's nothing to it, but I want to know what it is there's nothing to"
Rerun
Member for Life
******
Offline Offline

Gender: Female
Posts: 12242


Going through life tied to a chair!
« Reply #45 on: August 19, 2009, 07:18:04 PM »
I'm glad you went outside the box to a new PKD doctor.  Seems like you would have just used Stephan's.  I think this is a good thing.
Logged
okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #46 on: August 19, 2009, 07:39:35 PM »
 :thumbup; Sounds like a good plan!
Logged

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
monrein
Member for Life
******
Offline Offline

Gender: Female
Posts: 8323


Might as well smile
« Reply #47 on: August 20, 2009, 04:28:58 AM »
It does feel good to have a plan and it sounds encouraging Linda (of course I wish it didn't have to be at all).   Hope you had a good vacation and I think of you frequently.   :cuddle;
Logged
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
paris
Member for Life
******
Offline Offline

Gender: Female
Posts: 8859
« Reply #48 on: August 20, 2009, 08:03:36 AM »
Glad to hear there is some good news.  I will be anxious to hear how Will's test turns out.   :cuddle;
Logged


It's not what you gather, but what you scatter that tells what kind of life you have lived.
MandaMe1986
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2464
« Reply #49 on: August 20, 2009, 08:43:05 AM »
I am happy for you guys.  That is good news.  What treatments did he tell you about?
Logged
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
Pages: 1 [2] 3 Go Up Print 
« previous next »
 
Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!