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cariad
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What's past is prologue

« on: March 21, 2014, 01:27:36 PM »

Touchy territory with my American friend. To familiarize you with her personality, I sort of view her as a liar. Some of our earliest conversations were about how she is hiding masses of credit card debt from her husband, and I know she has lied to me. She also seems to be someone willing to do anything for her older child (but probably not her younger one) no matter whom she hurts in the process.

We had not seen each other for quite a long time because I've been avoiding her, but reconnected a week or two ago over coffee. She told me that her son has had a skin condition for almost a year now, and it consists of red spots on his face. Her son was at my son's birthday party last summer, so in an effort to be supportive I said I hadn't noticed (true). She said the spots started out more clear but have turned red and he is really self-conscious about it. She said "It's called molluscum something" and then followed that with "It's not contagious". I immediately sensed this was a lie, so googled it at home, and the 'something' turned out to be 'contagiousum'. Flipping. Molluscum. Contagiousum. It operates as advertised. It is HIGHLY contagious, and as she has seen their GP THREE times for this, I know that she knows perfectly well it is contagious. I do not want my younger son, the one who is friends with this boy, to come down with a condition that lasts a year (on average!!!) Not to mention that Aidan could pick it up, and what would that do to his confidence in performing his part (the lead) in a school play if it happened to spread to his face.

But most of all, if anyone in this house is going to get it, it is going to be me. My immune system is just not up to par. I know it's medically harmless, but it's one more virus that would take up my knackered immune system's resources, and yes, I am allowed to be concerned with my appearance and not want to have red spots all over my face (which can itch and/or hurt I might add). My Aussie friend seemed horrified when I was telling her that I cannot put politeness ahead of my health, I am going to have to say something if my American friend wants to get our boys together. For now, it was just a suggestion from her that we should get our boys together 'soon', but if she does come out with an actual day and time to do this, I don't know if I should say no outright, or just tell her that I don't want the boys doing anything to bring them into physical contact with each other (thoughts welcome). Aussie friend said adults don't get this condition (her boys have had it, too) and I wanted to say "Is that so, Doctor? Watch me!!"

Anyone else have to be a bit forceful, some might say impolite, out of concern for their own health? How did others react?
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
lainiepop
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« Reply #1 on: March 21, 2014, 01:56:35 PM »

Im very fortunate that all of my friends are very understanding that since my tx almost 2 yrs ago my immune system is 'delicate.' They do not come round if they have bad colds etc and always let me know before meeting if they or their kids have been sick in any way. To be honest this last year i havent worried as much as i have been pretty well. I hep at our church baby goup and my daughter literally eats all the pretend food, this week she shoved a piece in my mouth before i could stop her, she eats dirt and ive caught her trying to lick her shoes?! (girls aren't supposed to do those things right?! ;) ) I think she has helped my immune system grow again lol. And then my son is at school where this last yr (from september) he has had the odd sickness bug or high temp which i have avoided. Year 3 (2 yrs above him) in the last 2 weeks have had half their year off with a d and v bug and now the reception class has been struck with scarlett fever. One of the problems is mums send their kids in too soon. I was fuming last yr when tx was fairly recent to hear one mum say at the gates he's not feeling too good but he'll be ok he's some calpol call me if he gets worse?! Then what happens, kid ends end vomiting up calpol in the classroom. Most mums understand u should keep your child off 48hrs from d and v but prob is his school states 24 hrs (only one in the area!)
Sorry i havent really answered your question, but can understand completely where you're coming from. At the end of the day i think we have to accept if we have kids we cannot stop them being exposed to other kids germs and we are more likely to get sick! Some people just don't think about others as they've never been affected or they just don't care. My friend lost her spleen in a car accident so her immune system is compromised, as are the pregnant teachers at the school, so it's not just us. I kind of walk away from germy people now lol xx
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
amanda100wilson
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« Reply #2 on: March 21, 2014, 02:07:01 PM »

Think you should say something.  Contagious things have a nasty tendency of hanging around longer when your immune system is depressed.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
SooMK
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« Reply #3 on: March 21, 2014, 03:03:33 PM »

Seems to me you're not the only one who should be worried. Shouldn't the school be all over this? Then you can bet the mom wouldn't be trying to arrange contaminated play dates. I think using your health would actually make it easier to come up with a script that is as diplomatic as possible. Also she might just be talking about arranging a play date because she thinks it's expected. I'd wait for her to call and then have the script ready. The truth might work pretty well here--something along the lines of...you were so interested in it that you googled it and according to what you read...blah, blah, blah. I never used to pay any attention to germs (and cringe in remembrance now at how my younger self spread germs indiscriminately). With the prospect of a transplant looming soon I have been pondering similar challenges (well, I'm old so sort of similar) and wondering how I'll handle them.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
MooseMom
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« Reply #4 on: March 21, 2014, 03:15:10 PM »

Cariad, I hope you get some good replies because I may soon be in your position.  I was chatting with a neighbor who happened to mention that her grandkids were coming to visit soon.  Their mother (the neighbor's daughter-in-law) has decided that vaccination causes autism, so they have been vaccinated against nothing.  This will be the first time the grandchildren have made a trip to Chicagoland, so my neighbor is so excited and wants me to come see them.  I don't know how to refuse gracefully.

Hopefully your American friend won't pursue this and was just being polite.  :pray;  Let us know what happens!
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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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« Reply #5 on: March 21, 2014, 03:31:35 PM »

Cariad, you just need to be as firm as you stated and let her know how you feel. It is not as if you were close lifelong friends or as if she just found out you had been ill. She probably just doesn't understand your end of it. But she knew enough to mention the child was contagious when she was lying to you. Sounds to me like she is not the greatest friend you have ever had.
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One day at a time, thats all I can do.
amanda100wilson
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« Reply #6 on: March 21, 2014, 04:17:53 PM »

Moose Mom, be honest.  Those who choose not to vaccinate (and I know that that is there prerogative) also need to be aware that this decision can have far-reaching and devastating consequences to those whose immune systems are compromised, and I think few people even know or consider this factor.
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
MooseMom
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« Reply #7 on: March 21, 2014, 04:28:38 PM »

Moose Mom, be honest.  Those who choose not to vaccinate (and I know that that is there prerogative) also need to be aware that this decision can have far-reaching and devastating consequences to those whose immune systems are compromised, and I think few people even know or consider this factor.

Yes, you are right.  But, my son is autistic, so while I most definitely DO NOT think his autism was caused by vaccination, I do know how frightening the spectre of this condition can be.  But yes, you are right.  I'll have to be honest while trying very hard not to sound critical.  I'm not sure how defensive my neighbor would be on this issue; she has not really let on how she feels about it.  Thanks for the advice.
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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."
jeannea
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« Reply #8 on: March 22, 2014, 01:32:24 AM »

I think everyone with a transplant should be honest. I would start simply and calmly if possible. "My son cannot get together with your son. My immune system is suppressed and I could get ill. I cannot risk that right now. Thanks for calling. Bye." Then if she was persistent, I would be tempted to say more. "I am sure that your doctor would have told you this disease is contagious and you are being irresponsible and inconsiderate. You know I have had a transplant." I know you said she's an old friend but you don't need friends who don't care who gets sick.

I do know we can't live in a bubble and we can't avoid all germs. But that doesn't mean we need to walk right into dangerous situations. I don't touch kids at church, esp around chicken pox vaccination age, if I don't know the parents well enough to ask directly when the last vaccinations were. There are foods I won't eat in restaurants. Etc. i still get sick but I try not to get hospital sick (so sick I'm hospitalized). I see my nieces almost every day and they go to school. I try to encourage some hand washing and that can help.

MooseMom, I would be honest with your friend. There are some outbreaks right now that are dangerous. Look up measles outbreaks and the students at Princeton and Drexel who shared meningitis. There are probably more out there. Tell your friend you can't risk losing your transplant or dying. However, if it's a nice day out they could take a walk and you could meet outside to say hi without touching or being confined in a room. You can admire them and give the usual compliments. Depends on their age how to best do that.

Stay healthy everyone. You have to stick up for yourself. Many people think we're making all this up so don't let them make the decisions. I know my aunt thinks I'm making it up.
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Sugarlump
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« Reply #9 on: March 22, 2014, 02:01:44 AM »

I have quite a strict rule that all my friends and family abide by.
If you have any kind of germs or infection or a cold, you stay away from me.
I know i have such a weakened immune system, I can't fight even minor stuff off.

Any true friend appreciates this and never questions it.
That would also go for my children (when they lived at home) mixing with other children...

Our health is fragile and we cannot afford to take any chances...
My adive is to stand firm on this rule  >:(
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
obsidianom
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« Reply #10 on: March 22, 2014, 08:05:25 AM »

Touchy territory with my American friend. To familiarize you with her personality, I sort of view her as a liar. Some of our earliest conversations were about how she is hiding masses of credit card debt from her husband, and I know she has lied to me. She also seems to be someone willing to do anything for her older child (but probably not her younger one) no matter whom she hurts in the process.

We had not seen each other for quite a long time because I've been avoiding her, but reconnected a week or two ago over coffee. She told me that her son has had a skin condition for almost a year now, and it consists of red spots on his face. Her son was at my son's birthday party last summer, so in an effort to be supportive I said I hadn't noticed (true). She said the spots started out more clear but have turned red and he is really self-conscious about it. She said "It's called molluscum something" and then followed that with "It's not contagious". I immediately sensed this was a lie, so googled it at home, and the 'something' turned out to be 'contagiousum'. Flipping. Molluscum. Contagiousum. It operates as advertised. It is HIGHLY contagious, and as she has seen their GP THREE times for this, I know that she knows perfectly well it is contagious. I do not want my younger son, the one who is friends with this boy, to come down with a condition that lasts a year (on average!!!) Not to mention that Aidan could pick it up, and what would that do to his confidence in performing his part (the lead) in a school play if it happened to spread to his face.

But most of all, if anyone in this house is going to get it, it is going to be me. My immune system is just not up to par. I know it's medically harmless, but it's one more virus that would take up my knackered immune system's resources, and yes, I am allowed to be concerned with my appearance and not want to have red spots all over my face (which can itch and/or hurt I might add). My Aussie friend seemed horrified when I was telling her that I cannot put politeness ahead of my health, I am going to have to say something if my American friend wants to get our boys together. For now, it was just a suggestion from her that we should get our boys together 'soon', but if she does come out with an actual day and time to do this, I don't know if I should say no outright, or just tell her that I don't want the boys doing anything to bring them into physical contact with each other (thoughts welcome). Aussie friend said adults don't get this condition (her boys have had it, too) and I wanted to say "Is that so, Doctor? Watch me!!"

Anyone else have to be a bit forceful, some might say impolite, out of concern for their own health? How did others react?
There are 3 types and adults can get it. It is more commonly spread via sexual contact in adults. Kids spread it through physical contact or touching towels or other items that are comtaminated. I WOULDNT LET IT IN MY HOUSE . It is no fun . Yes its benign in time but it can be a problem for quite a while.
Better to be safe than sorry. Stay away form it.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
cariad
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What's past is prologue

« Reply #11 on: April 23, 2014, 03:04:17 PM »

Many thanks for the replies.
Stay healthy everyone. You have to stick up for yourself. Many people think we're making all this up so don't let them make the decisions. I know my aunt thinks I'm making it up.
I never took any of this seriously with my first transplant, so I do understand the mindset that transplant is not a big deal. I felt that way myself, and as a child we tend to think that our experience is universal, so I thought I knew what kidney transplant - all kidney transplant - was about. I would have thought that watching me go through meningitis would have proved my point that I do actually get VERY sick every once in a while, and seem to succumb to illness more easily than most, but she is quite immature in some ways. Definitely not the greatest friend, as Jean suggested, and I do keep her at a bit more of a distance than most friends just because she can be a bit hard to take. I sometimes worry a little that I'm not being entirely fair to her, because something about her just rubs me the wrong way, so it helps to hear that I'm not being overly self-centered by not wanting to risk this condition.

She only just contacted me last week, and I've been frazzled and running around town with work and other stuff, so haven't replied yet. I am hoping her son has finally cleared the virus, thus solving all of our problems. (Ideal solution!)

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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
goofball
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« Reply #12 on: April 23, 2014, 03:23:36 PM »

Your friend's obviously unequal treatment of her children (golden child, scapegoat dichotomy), lies, and gross disregard for spreading a contagious disease (which I am sure she knew was contagious) leads me to believe she is a narcissist.

I would stay well away.
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APKD - 47yr-old

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Deanne
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« Reply #13 on: April 25, 2014, 02:15:56 PM »

I've already learned I have to be honest with people about germs and found out that people will mostly take it pretty well. My packrat/hoarder neighbor invited me over to eat and pressed me when I told her I couldn't eat at her house. I didn't want to insult her, but in the end, I had to be honest or this would be a battle I'd constantly have with her - her inviting me over, me always refusing. I told her as kindly as possible that her kitchen has too much bacteria in it for me to eat anything that comes out of it. The experience taught me to give people more credit. She thanked me for telling her and later told me that her backyard isn't appropriate for me, either. I'll be glad not to have to keep dodging her invitations.

The mothers of these children have to know that children spread germs. They might take it just fine if you're honest with them about your limitations.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Angiepkd
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« Reply #14 on: April 25, 2014, 06:49:45 PM »

 Years ago, my son had a friend from school spend the night.  Didn't think anything of it, but my son soon developed small bumps on his arms and torso.  Turned out to be molluscum contagiousum.  We had to make several trips to the pediatrician to have it treated with an acidic solution.  I asked the friends mom about it and her response was, "oh, yeah, I think the doctor said something about that last time we were there."  I was so flipping mad.  This was prior to my kidney failure and transplant, but what if it had been after?  People can be so inconsiderate.  Since my transplant, I have had several situations that made me uncomfortable due to my weakened immune system, and I am struggling with how to handle them.  One involves our best friends whose son has hepatitis. Not sure if it's A, B, or C and they don't seem concerned. I am very nervous about it, but not sure how to bring it up. I asked the CNP at transplant clinic, and she said it would be difficult for me to contract without blood contact, but I am still a wreck when I see him.  I think we just have to stand up for ourselves and our health, but it is very hard sometimes.  I hate conflict and don't like to make waves.  I am going to have to learn to do better with this.  Good luck and hopefully your friend doesn't push the issue any further.
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
jeannea
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« Reply #15 on: April 26, 2014, 01:35:17 PM »

Angiepkd, that is difficult. The problem is you don't know what kind. If it's A, that's the easiest to share but also should be treated so he'd be ok after a while. If it's B or C, you would have to share blood. So you're probably ok. But I understand the fear. Don't be afraid to ask questions and make waves if necessary. Once someone makes it clear they don't care by dismissing my concerns, I refuse to trust them.
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