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Author Topic: Next Week- Long, and not so chipper :-(  (Read 12785 times)
willowtreewren
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« on: September 22, 2009, 05:25:37 PM »

So, next week I am going to have the 24 hour urine test again to see what my creatinine clearance is. I have spent more than a year getting ready for this and now I am scared.

This year I have had no ibuprofen (used to take it to help me sleep because of the arthritis pain in my knees and fingers). I have had no allergy medicine (used to take it to help me sleep when allergy season was bad - Spring and fall). I have cut out artificial sweeteners. And I have tried to lose weight. That has been the hardest, hardest part. I have only lost 11 pounds. I wanted it to be 15 by next week.

So, I don't sleep so well anymore. I wonder why. Ha Ha. And depression has been a more frequent "guest" in my character. Probably lots of reasons for that. Sleep deprivation, being a dialysis caregiver, being over worked and underpaid.

And right now being unfathomably scared of the results of the test either way. What if I STILL can't give a kidney to my husband? How long can I keep up this schedule? Will I crack completely under the stress of it? Especially now that my traveling is about to start up again. OMG! How do I keep a smile on my face so my husband doesn't feel guilty about being the reason for the extra work I have to do and the pleasurable things we have to fore-go?

And what if the results have improved so I CAN give a kidney to my husband? Am I really, really ready to go under the knife again? I hate surgery. I've had so many. I hate being put under. What if the transplant team discovers how much I hate surgery and disqualify me for that? Or if they find out that I'm struggling with depression? Can I make it through all the other parts of the evaluation? Will I fail some other part even if I pass this one?

And how in the world can we BOTH be away from work long enough for a transplant. And what if something goes wrong? What if one or both of us are incapacitated? I'm feeling so irrationally paralyzed by all this uncertainty.

And keeping it all in. My daughter comes to me for advice. My son-in-law comes to me for advice. My dad (who I'm taking for cataract surgery tomorrow) comes to me for advice. The teachers at school, the parents at school, my adult students, and even people I have never, ever met come to me for advice. Just today I had a request to write an article for an international Montessori publication, a call from a lobbyist to contact my state senator (a former parent) about a higher education issue, and a request to visit a school for a consultation in another state. I got a letter from a parent about how to handle issues with her child, a call from the head of another school about a behavior issue with a child regarding nap time, and an email from an adult student in Singapore who needs help deciding what materials to buy for her school. And that is on top of a full day of teaching my own students.

So where do I go for support? Here.

If I do "fail" the urine test again, I have made a deal with my doctor to seek professional help, but where is the money going to come from for that??

I actually realize that part of the reason I'm feeling so awfully, awfully down is because it has been too cold and rainy since last Monday to go swimming - my only real outlet. I tried the cross trainer last night. Ugh. Gives me a heart workout, but not the sense of peace from exercising in the pool.  :'(

Sorry for this long missive. No one else to share with.

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. :)
monrein
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Might as well smile

« Reply #1 on: September 22, 2009, 06:27:28 PM »

Aleta, that plate is so full that anyone, barring perhaps Ms Wonderwoman, would be overwhelmed, completely overwhelmed.  Keep on putting one foot in front of the other but try NOT to take on anything more, no matter how urgent a case is made for it's importance.  This is a marathon rather than a sprint and your reserves need reserving.  I know that you already know all this and that I'm only stating the obvious but we (selfishly) need you here also, so I'll send you a hug and my admiration for all the tough changes you've already made and another hug for the week ahead.   :cuddle; :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
Jean
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« Reply #2 on: September 22, 2009, 10:15:34 PM »

Oh, Aleta, I cant even begin to help I just will pray for you and hope you get some time to yourself and unwind, before you blow your top altogether. Your plate is supersized, and way too full. Take care, take it easy and rant away if need be.
Hugs and prayers for you.  :pray; :flower;
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One day at a time, thats all I can do.
billybags
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« Reply #3 on: September 22, 2009, 11:02:51 PM »

willowtreewren, Life is full of "what if's". Take a deep breath, think of all the positives in your life. You are coping extremely well with what has been thrown at you. You must be a very strong person to do what you are doing. The anxieties you are feeling are normal. Lots of hugs and prayers are being sent to you to-day.
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okarol
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« Reply #4 on: September 22, 2009, 11:12:25 PM »


I can only say that things will turn out the way they are supposed to - might be good or bad - it is what it is. Or something you didn't even think of could occur!
I wish I could make it all better - I can only send you some big HUGS!  :grouphug;
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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
Des
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« Reply #5 on: September 22, 2009, 11:52:33 PM »

wtw....

Like I said before.... you are a special person!

I can honestly say that the "what-ifs" can drive you nuts if you give in to them. SO, please don't. Deal with one thing at a time and then move on to the next. (easier said than done?)

Make a list of actions not "what-ifs". You only have control over you own actions.
Tick them off the list as you complete them.... do not worry about the outcome. Things will work out. You will get what you deserve and believe me : You deserve the best!!

hugs and love
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #6 on: September 23, 2009, 02:08:18 AM »

If you can't give him a kidney then it's just not meant to be!  My sister is going through the hoops to see if she can be an altruistic donor - and she is struggling a bit with the worry about something not being right.  Something can knock you out at every stage.  Try not to let yourself worry - you can't change anything.
Also, in my book there's no such thing as 'only' 11 lbs!!  Wow - 11 lbs is what I think you meant.  That's a huge effort!  Again, I know it's hard, but try not to worry over things you cannot change.
All the work stuff though .... OMG!!
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
willowtreewren
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« Reply #7 on: September 23, 2009, 04:43:51 AM »

Thank you everyone. Your support has brought tears to my eyes. Now I need to dry them before seeing any of my students or they will wonder what is wrong!  :)

I cried when we got the news of Jbeany's transplant and I was able to simply say that my tears were happy tears (true). Harder to pull off today.

You guys are really, really the best.

Last night my husband said that my 11 pounds have made a wonderful difference in how I look, bless his heart. At least he didn't do the joke about the wife whose eyesight was 100%. I think that was one of yours, Des!  :rofl;

Yes, each day, one step at a time. Ironically, right after I posted I got a long e-mail from a former adult student who needed advice on how to handle her class in a new job this year. Sigh.

But, I'm coping. Trying not to what if myself to death.

 :thx;

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. :)
glitter
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« Reply #8 on: September 23, 2009, 08:28:54 AM »

You are such a kind person,  :grouphug; :grouphug; :flower; :flower; :flower;
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Jack A Adams July 2, 1957--Feb. 28, 2009
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paul.karen
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« Reply #9 on: September 23, 2009, 08:49:35 AM »

Wow you do have your hands full.

I have no words of wisdom or inspiration to pass along.
(ques i would come to you for that?)

But i do want to wish you the best in your test.
And i can say a little prayer for you.

Goodluck, i hope cutting out some of the things you take for comfort makes it all worth while.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
willieandwinnie
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« Reply #10 on: September 23, 2009, 08:55:11 AM »

 :cuddle; Aleta. I don't have any magical words to make things easier for you but have plenty of  :pray; and  :grouphug;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
rose1999
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« Reply #11 on: September 23, 2009, 10:11:25 AM »

Aleta you are always so supportive of others and I hope we can now support you.  As you know, what will be, will be but that never stopped anyone worrying did it.

I hope and pray :pray;  for the best for you, please keep us posted and please remember we have a lot of love here for you.
Rose
xxx
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thegrammalady
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« Reply #12 on: September 23, 2009, 10:46:41 AM »

11 pounds! you should be extremely proud of yourself. speaking as someone who used to weigh 240 pounds i know how difficult that is. kudos to you.  keep your chin up and know that you can come here whenever you need to and we will listen with love.  :grouphug; :grouphug;
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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
willowtreewren
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« Reply #13 on: September 23, 2009, 12:49:49 PM »

Thank you, thank you. Rose, I think one of the beauties of this IHD family is that even though we all go through rough times, there are enough of us that we can spread around support and caring in cycles. Sometimes we give and sometimes we receive.

I so appreciate all the caring that is coming my way now. And I'll recover my equilibrium soon, I'm sure.

Thank you.

 :grouphug; :grouphug;
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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. :)
dwcrawford
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Getting the heck out of town.

« Reply #14 on: September 23, 2009, 03:05:29 PM »

Oh Aleta, you are not Superwoman?  I am shocked.  You just have too much on your plate now and were right to ask for help.  If only there were something we could do!!!  One things at a time but, for goodness sake, don't let the real bad depression in.  There is nothing wrong with finding a counselor for all the conflicting issues in your head.  They make perfect sense to me.
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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.
willowtreewren
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« Reply #15 on: September 23, 2009, 04:42:04 PM »

Quote
Oh Aleta, you are not Superwoman?  I am shocked.

Dan, you crack me up.  :rofl; Thanks.

I picked up the 24 hour jug and the collection "hat" today on the way back from taking my dad for his surgery. I guess it kind of works out that my pool is too cool (it's a cool pool) to swim in because I don't want to do any exercise for 72 hours prior to my test. While Dad was in his surgery I made a run to the paper store to pick up paper that will match the wedding gown of the bride in the service I'm performing in a couple weeks. I always make matching pages of the service for my readings that I give to the couple after the ceremony. It is going to be a looooong ceremony.  :bow;

Little steps. I slept well last night, but then a good crying jag will do that!  :clap;

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. :)
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