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Author Topic: The c word.....  (Read 23150 times)
rsudock
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will of the healthy makes up the fate of the sick.
« on: January 05, 2012, 10:54:08 AM »
They told Neil he may have lymphoma.    :embarassed:  Be back when I know more...if this kid dies I am going to lose my sh@@!

Working on transferring to our home hospital. The neph here had never seen or heard of ARPKD....blah!

Xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
MooseMom
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« Reply #1 on: January 05, 2012, 11:01:22 AM »
Oh Rachel, I hope the doc is wrong. :cuddle;  Please do let us know as soon as you know anything more.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
willowtreewren
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« Reply #2 on: January 05, 2012, 11:36:15 AM »
 :grouphug; :grouphug; :grouphug;

Awwww. Will keep you and your brother in my thoughts.

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. :)
Poppylicious
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« Reply #3 on: January 05, 2012, 02:23:01 PM »
Oh no.  *huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
cariad
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« Reply #4 on: January 05, 2012, 02:23:32 PM »
This is not what I wanted to read.... Rachel, the hugs are coming your way.  :cuddle; :cuddle; :cuddle;

Neil is not going to die. He has too much to live for. My aunt had an aggressive but highly treatable form of cancer, and I'm nearly certain it was a type of lymphoma. If he does have this, he can beat it. (My aunt did, many years ago.) Neil sounds like a tough young man to me. :boxing; 

Thinking of you both.  :grouphug; :grouphug; :grouphug;
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jbeany
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Cattitude
« Reply #5 on: January 05, 2012, 04:06:50 PM »
 :grouphug; :grouphug; :grouphug;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
YLGuy
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« Reply #6 on: January 05, 2012, 04:25:23 PM »
I am so sorry to hear. Hang in there.   :grouphug;
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lmunchkin
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« Reply #7 on: January 05, 2012, 04:39:24 PM »
You two have each other!  You both have been through this Kidney Krap, and you will get through this too, "TOGETHER"!

Praying for you both,
lmunchkin
 :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
galvo
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« Reply #8 on: January 05, 2012, 05:39:45 PM »
You are in my thoughts.
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Galvo
KarenInWA
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« Reply #9 on: January 05, 2012, 06:00:23 PM »
I am so sorry to hear this. If it is indeed the c-word, I hope it is the most easily treatable kind. If it is not, I hope there is a reasonable explanation as to why they scared you all with this news, so you can all move forward into a healthy 2012. My thoughts are with you.

 :grouphug;

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Marsh
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« Reply #10 on: January 05, 2012, 06:51:33 PM »
 :grouphug;
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boswife
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us and fam easter 2013
« Reply #11 on: January 05, 2012, 07:38:35 PM »
oh dear one,,, i pray for good news for you.. this is frightning,,, im glad to read it's beatable..  sending love  :cuddle;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
okarol
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« Reply #12 on: January 05, 2012, 08:22:04 PM »
 :grouphug; So sorry, but hope you can get more info soon.
My mom has lymphoma, and they have been able to control it for a long time.
Sending {{{HUGS}}}
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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
kitkatz
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« Reply #13 on: January 05, 2012, 08:52:46 PM »
Hugs to you and your family!   :grouphug; :grouphug; :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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #14 on: January 07, 2012, 05:03:28 AM »
hey thanks friends for your support. they told him the "nodes" in the stomach were to small to biopsy so in 2 months they will do another MRI and see if there is any change....HA like I am going to wait two months right. So Neil and I will make arrangements for the normal docs to do an endoscope. There is a chance it could turn to be nothing, I just hope it is....I know none of us are getting out of here alive, but sometimes I can't connect that to my heart. I get scared...what would I do without my little sidekick? "wonder twins" is what he calls us... :)  My heart would just break away into a million little pieces....

The a**hole oncology resident really broke the news with fine decorum. Basically Neil's at dialysis, 2 huge needles in his arm, I'm not there, and in front of all these strangers..."Well you may have lymphoma." And of course he sat there the remaining treatment with that on his shoulders. I mean seriously what a douche bag! Probably talks about people's HIV status on a stage in the hematology wing?!

so my next email will be to the hospital patient care whatever place...this hospital was gross. Had to pay for your own cable, volunteers stalked the supplies in rooms, and all rooms had 2 patients in them. They put someone with pneumonia with Neil and I had to restrain myself not to kill someone...that person got moved....

so this story will be continued when I know more...

Love to you all!
xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
willowtreewren
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My two beautifull granddaughters

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« Reply #15 on: January 07, 2012, 06:44:40 AM »
Continuing to send loving thoughts your way.

 :grouphug; :grouphug; :grouphug;

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. :)
lmunchkin
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"There Is No Place Like Home!"
« Reply #16 on: January 07, 2012, 04:33:57 PM »
I just asked about Neil in another post of yours today.  So they really don't know anything new until the MRI in "2 months"?  I agree, don't wait no 2 months. 

Keep us posted & sending prayers to you & Neil.

lmunchkin
 :kickstart;
Logged
11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #17 on: January 23, 2012, 08:59:21 AM »
so Neil is back in the hospital since last Thursday. Aaron took him to the ER because he was bleeding from the rectum. They did an endoscopy (tube down the throat) and today they did a colonoscopy. As far as the lymphoma they didn't see any indication of that!  :bow; So thankful for that! They did a colonoscopy and found some internal hemrroids (that was what I was thinking)

Because of our kidney disease we get portal hypertension (basically high blood pressure in the liver, so blood backs up and bulges in veins in other places in the body, and results in liver damage)  so they think that is what is causing the hemrroids. They did find a polyp and some inflammation in the colon so, they took biopsies. The polyp could be troubling, but since they found it early it should be okay. His liver is still okay and the varcies in his throat (bulging veins in the throat caused again by the portal hypertension) actually look better!!!

So lot's of good, positive results today. Just waiting on the pathology reports and still trying to figure out what is causing the fevers he has been having. A doctor complimented me on my knowledge about ESRD and liver disease! Guess I should have become a doctor!

xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
lmunchkin
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"There Is No Place Like Home!"
« Reply #18 on: January 24, 2012, 03:44:59 PM »
Great News!  :yahoo; So glad to hear this.  Naw, you make a better Nurse, Doctors are too upity!  Nurses are more nuturing and caring!  :cuddle;

Good news, Rachael.  Hope path report comes back promising also!!!   :pray;

lmunchkin
 :kickstart;
Logged
11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
galvo
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« Reply #19 on: January 24, 2012, 03:45:47 PM »
 :2thumbsup;
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Galvo
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #20 on: January 31, 2012, 11:28:48 AM »
Just a little sidebar that I am going to sneak in here....Neil got out of the hospital a week ago this Friday....he is still pretty tired and they are giving him antibiotics at the dialysis unit. He seems to me more emotional lately about things...easily upset, grumpy, super sensitive...I have been treading lightly. My sister tells me I need to tell Neil to be nicer, but I just can't...he not being terrible just demanding at times. I will never say anything b/c now I know how shitty dialysis is and how long he has endured it.........I can be the long suffering one.....

I had to take his discharge papers to the dialysis unit yesterday...he was laying on the bed hooked to the machine....gawd I f***ing hated seeing him like that! I just went to my car and cried about 20 mins...if I could I would give him my kidney a thousand times over and over again.....I know I still see dialysis everyday, but just so much harder with my brother, my bestest friend.......I just want him to have a good chunk of healthy life...just seems lately to me he is so much more tired then usual....

love,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
willowtreewren
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My two beautifull granddaughters

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« Reply #21 on: January 31, 2012, 11:53:11 AM »
Oh, Rachel.

 :grouphug;

It is wonderful that you are there for him. I'm sure he is glad to have you in his life. You can do more for him healthy, so keep yourdelf going strong, too.

 :grouphug;

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. :)
MooseMom
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« Reply #22 on: January 31, 2012, 12:52:31 PM »
Good for you for letting Neil be an old grumpy guts if he needs to be.  The last thing he needs is someone banging on at him about being "nicer".  You have a special insight into what it is like to be always unwell and just waiting for the next piece of bad news to come along.  What a terrible way to live.  This just is not fair.

Rachel, does he receive any kind of counselling?  Do you think it might help him?  I mean, he has so much to cope with, and since his condition is genetic, is there even any treatment close to a cure?  I am assuming there is no cure, per se, and this would be just so hard to live with on a day to day basis. 

I'm sorry I don't know his whole story...is he eligible for a kidney transplant?  Would a liver transplant ever be necessary/considered?  I don't know much about portal hypertension, so pardon my ignorance.

Thank god he has you.  I'm sure he is grateful for your non-judgmental presence. :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #23 on: February 01, 2012, 10:02:16 AM »
Thanks Michelle and Aleta  :grouphug;

MM no he doesn't get counseling...except for when him and I have our long chats in the car. We probably both need it actually, maybe I ask him to sign up with me somewhere?!

Just like the dominant form of PKD, the recessive has no cure either. You can test for the condition invitro though...

Right now he is on the list, but his PRA is 99. So if he gets a call it will be like winning the jackpot! He needs to get that treatment plasmapheresis to lower his PRA. He says next summer 2013 we are going to make a road trip to the MAYO clinic....

My uncle facebook me about a week ago asking who he needs to contact about donating his kidney to Neil, but I am unsure how steadfast and committed any of my extended family would be about donating....with the PRA lowering it is going to be a journey to match Neil....I don't see any of them being able to commit to donating that long....

Thankfully all he needs is a kidney right now...no liver...yet......but we both are evaluated for liver transplant from year to year....

love,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
MooseMom
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« Reply #24 on: February 01, 2012, 03:03:28 PM »
Oh geez, I am so stupid.  I'm sorry Rachel...I was in a hurry when I posted last and wasn't thinking, which isn't an excuse.  Of course I know that autosomal recessive form of PKD isn't "curable"...I saw "portal hypertension" and didn't link it with the PKD. 

I know that counselling doesn't really solve anything, but you two are living under such stressful conditions that you deserve all the help you can get.  It might be worth considering.  But there's nothing like the support of a sibling who really understands.

Hmmm....what are you going to say to your uncle, if anything?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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