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Author Topic: A summer of sadness...  (Read 42240 times)
Romona
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« 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.  :'(
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« 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
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thegrammalady
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« Reply #27 on: August 07, 2009, 10:03:23 AM »

hoping that somewhere in this mess you will find some good news.
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pelagia
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« 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.
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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
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« Reply #29 on: August 07, 2009, 12:12:25 PM »

 :'(  :cuddle;
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« Reply #30 on: August 07, 2009, 12:15:10 PM »

Linda, I am  :'( here with you.  So very sorry.   :cuddle;
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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.
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Second trx doing great so far...all lab values in normal ranges
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« 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;
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« 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.
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« Reply #33 on: August 07, 2009, 03:56:26 PM »

Thinking of you.
 :-*
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« Reply #34 on: August 07, 2009, 05:46:37 PM »

 :grouphug; :cuddle; :grouphug; :cuddle; :grouphug;

There are no words, except I'm so sorry.
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« 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.
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« 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.
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« 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;
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pelagia
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« 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.
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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
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« 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. 
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rose1999
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« Reply #40 on: August 09, 2009, 12:24:50 PM »

Linda, just to let you know you and Will remain in my thoughts xxxx
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pelagia
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« 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
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« 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.
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« 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;
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« 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;
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« 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.
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« Reply #46 on: August 19, 2009, 07:39:35 PM »

 :thumbup; Sounds like a good plan!
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« 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;
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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
paris
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« 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;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
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« 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?
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