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Author Topic: How has my life ended up like this?  (Read 4028 times)
KICKSTART
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« on: September 17, 2010, 06:43:17 AM »

I dont feel angry , frightened, i dont feel anything today , just numb. On top of all the issues im having with dialysis , the staff etc , i didnt think things could get any worse. Im not brave enough to die , but will i want to live? As you know i have been having issues with COPD and been for tests and recently a scan . Well today informed by letter ! I got the following. We have found an area on your left lung , that may or may not be cause for concern. So we would like to monitor you for the next 3 months and then bring you back for another scan, at which time i will see you to discuss the results. Well i want to remain positive, but who the hell knows? What seems impossible to me , is to wait 3 months . 3 months for what ? If it is the worst outcome then what can have happened in the next 3 months? If its not then no harm done . But the mental strain now on top of everything else might just be a little to much for me. I dont know, right now i dont care. How the hell did i end up in such a mess ?
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
carol1987
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« Reply #1 on: September 17, 2010, 06:47:11 AM »

Hang in there!!!
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
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« Reply #2 on: September 17, 2010, 07:07:26 AM »

I wish just one time they would give you a complete answer in a timely manner.  A letter saying they found something?  Not appropriate!   Three months wait?  What are they thinking!!   Three months can be a long time.  How are they going to monitor you?     I am sorry, Kickstart.    I think you are an amazing fighter.  You have to be!   Love you and send you good thoughts.    :cuddle;
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« Reply #3 on: September 17, 2010, 08:06:46 AM »

 :cuddle;
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caregiver to husband Frank

bladder cancer 1994
renal failure April 2009 due to blocked right ureter. Left kidney 20% function
November 18 2009 surgery to remove right ureter.
April 3, 2010 removal bladder, prostrate, left kidney.
June 11, 2010 started Hemo @ hospital
July 2, 2010 Embolized right Kidney due to hemoraging of tumor
September 11, 2010 RIP my love
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« Reply #4 on: September 17, 2010, 08:21:58 AM »

I'm sorry you got that letter.  It would seem pretty scary to me.  What I would do is try very hard to not think about it.  Think positive thoughts, nothing is there, there is not a spot, it was a mistake, God will take care of it, etc.  Try to block out the negative thoughts.  There is something to be said for prayer and positive thinking.  Hang in there! 
 :cuddle;
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9/1990 Found out I have Type 1 Diabetes
7/2008 Told I have GFR 30
2/2009 Kidney/Pancreas Transplant
5 days later, both removed due to massive rejection
Back on List
2/26/10 Fistula placed
3/11/10 Told GFR 9
5/14/10 Started in center Hemo
Waiting on another Transplant
MooseMom
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« Reply #5 on: September 17, 2010, 08:37:56 AM »

I understand the mental strain of it all.  I went through a similar thing when I had my first mammogram.  They found "something", but since it was my first test, they didn't know if it was normal for me or if it was going to be a problem.  They were very good about reassuring me that this was to be seen as a "baseline."  I had to wait several months before I was retested, and I was so nervous that my stomach hurts now just thinking about it.  The spot had "resolved" itself.  So, I am going to take the same tack with you and try to offer some reassurance, although I will be the first to admit that I don't know much about COPD nor about your history with it.  I am assuming that you are worried that you have lung cancer.  Doing a bit of research, statistics show that only 1-2% of people with COPD go on to develop lung cancer.  On the other hand, though, most people with lung cancer develop COPD for obvious reasons.  Do you have the symptoms of lung cancer, ie weight loss or coughing up blood?

If you have COPD, I frankly would have been surprised if they DIDN'T find an "area of concern."  It doesn't mean it's cancer, though.

I'm so sorry about this.  I really do feel your fear.  I hope we can help.
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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."
texasstyle
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« Reply #6 on: September 17, 2010, 10:01:35 AM »

Life sure seems hard at times. We all feel that way and I'm sorry you're especially feeling that today. Find a way to rest your mind and body. I know when I'm menatlly spent, sleep helps me feel refreshed emotionally . Then I start thinking....lol. Take it one day a time sweetie and vent it out! it's ok.
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caregiver to husband using in-center dialysis 4 years
thegrammalady
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« Reply #7 on: September 17, 2010, 10:33:23 AM »

 :grouphug;
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KICKSTART
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« Reply #8 on: September 17, 2010, 11:18:41 AM »

Yeah, i have slept a lot today , i think its escapism ! One thing i have decided today is that im going to go get a new tattoo on my shoulder ..The Grim Reaper !!!! :2thumbsup;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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« Reply #9 on: September 17, 2010, 11:52:32 AM »

Yeah, i have slept a lot today , i think its escapism ! One thing i have decided today is that im going to go get a new tattoo on my shoulder ..The Grim Reaper !!!! :2thumbsup;
*chuckles* ... an ex of mine had the Grim Reaper tattoo'd on his arm (amongst skulls and other morbidly fascinating things - it all looked good though; I miss his tattoos!)

As for the 'mess' ... I'm sorry that everything seems to get thrown in your direction.  Keep your chin up, duck (easier said than done, I know). 

*huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
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Everything was beautiful, and nothing hurt.
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« Reply #10 on: September 17, 2010, 04:08:45 PM »

 :cuddle;
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One day at a time, thats all I can do.
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« Reply #11 on: September 17, 2010, 10:39:05 PM »

  :kickstart; Life takes you on a journey, it's a mystery how/why we get what we get.
I know you had a break from troubles, where you got your dogs back, and when you horseback riding. I wish more good days for you, please hang in there.
Geeez there are a ton of tatoos to choose from http://www.tattoojohnny.com/search/grim%20reaper
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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
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Sunny

« Reply #12 on: September 18, 2010, 01:35:17 AM »

I could see how you would be nervous. It just isn't fair that you have been so bombarded with so many issues.
I had a mammogram like Moosemom described and remember how bothered I was about the wait to see if anything was wrong.Turns out it was just "calcification deposits" which was a relief. Let's hope you will have good results too.
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Sunny, 49 year old female
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RightSide
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« Reply #13 on: September 18, 2010, 08:49:29 AM »

I dont feel angry , frightened, i dont feel anything today , just numb. On top of all the issues im having with dialysis , the staff etc , i didnt think things could get any worse. Im not brave enough to die , but will i want to live? As you know i have been having issues with COPD and been for tests and recently a scan . Well today informed by letter ! I got the following. We have found an area on your left lung , that may or may not be cause for concern. So we would like to monitor you for the next 3 months and then bring you back for another scan, at which time i will see you to discuss the results. Well i want to remain positive, but who the hell knows? What seems impossible to me , is to wait 3 months . 3 months for what ? If it is the worst outcome then what can have happened in the next 3 months? If its not then no harm done . But the mental strain now on top of everything else might just be a little to much for me. I dont know, right now i dont care. How the hell did i end up in such a mess ?
I'm really sorry to hear that you may have a problem with your lung too.  You didn't need that right now, to be sure.  Hang in there, try to remain cheerful, and keep us posted.

As to "how the hell you ended up in such a mess":

Step One:  You were born as a Homo Sapiens on planet Earth.

Unfortunately, we ALL "end up in such a mess" eventually.  As we go through our lives, the Grim Reaper keeps taking pot shots at us. And he has a perfect score--he eventually gets us all.

Like me, for example.  I had always done all the things they tell you to do to stay healthy:  I never smoked, only occasional social drinking, watched my weight, aerobic exercise every single day, high fiber, low fat, low "bad" cholesterol, blood pressure good, no diabetes or other major health problems, yearly physical exams, colonoscopy, the whole nine yards.

I got zapped by Primary FSGS anyway.
Good shot, Grim Reaper!  You wounded me!

« Last Edit: September 18, 2010, 08:51:30 AM by RightSide » Logged
Restorer
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« Reply #14 on: September 18, 2010, 10:48:27 AM »

When I had an MRI of my kidneys when I was being diagnosed originally, the MRI caught some of my lungs, and the radiologist noted "small calcified nodules." I've read that those are common in ESRD patients, especially those with high phosphorus or calcium, and are usually harmless and go away. Hopefully that's your explanation.
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- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
KICKSTART
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« Reply #15 on: September 19, 2010, 04:41:30 AM »

When I had an MRI of my kidneys when I was being diagnosed originally, the MRI caught some of my lungs, and the radiologist noted "small calcified nodules." I've read that those are common in ESRD patients, especially those with high phosphorus or calcium, and are usually harmless and go away. Hopefully that's your explanation.

Thanks Restorer , i do have issues with high phos. Thanks to everyone for your positive thoughts  :grouphug;
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
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