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Author Topic: its been a while, but its been a good while  (Read 2370 times)
gothiclovemonkey
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« on: June 20, 2014, 08:16:00 AM »

I havent been on here much, thought i'd get on and see whats going on for all
I realized that a lot of times that we post (especially myself) its only when things are not going to great.
As far as life in general goes, everything is pretty wonderful here. I am about to 'celebrate' my 6 mos of marriage, and its been a great 6 mos. Married life really isnt much different than what we had living together, but i find myself loving him more every day- which i didnt think would be possible!
My son is doing pretty well too. Of course we have our moments. Its hard to explain things to him, which can be so frustrating, especially when it comes to health stuff...

Health, of course, could be better. My darn graft clotted off pretty badly, doc had trouble cleaning it up too... he said the techs are pushing too hard when they pull the needles (and yes, they are, it hurts!) so it cant be used for a while. I asked if i could pull, they said no.
My RA is getting out of hand, but i have my appt coming up soon, so hopefully i get some relief there. It is difficult to push myself lately, but ive managed to do it, still. Thank GOodness! I even took my son swimming, we had a blast!
I did decide Id like to wait for transplant, but i still have to discuss it with the team. I dont want to completely stop the process, but maybe postpone it a few years, until my son is older, and will hopefully understand better. "just in case"

Its a strange thing, to have so much happiness and so much pain at the same time. im so blessed with a wonderful husband and son, and i wish i felt better for them. but im thankful they are here. without them,i dont think id be here. they make all this struggle worth it.

Anywho, i hope this was inspriing. I wish to see more posts about the good stuff too. Anyone want to share some good stuff? :)
<3
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
Deanne
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« Reply #1 on: June 20, 2014, 08:20:27 AM »

You sound happy!  :flower;

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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
lainiepop
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« Reply #2 on: June 20, 2014, 08:58:14 AM »

Hi! Glad u are happy and congrats on your 6th months of marriage!

I think we can all relate to you so much happiness and pain at some time. Ive been feeling low this morning, am in pain from an emergency operation i had 4 weeks ago (turned out my bowels twisted round old scar tissue, needed to sort or would have been fatal) It was an awful op, way worse than tx and i felt so depressed in hospital, especially as was such a shock, i missed my daughters first ballet show (she is almost 3), and the recovery time is 3 months. Some days i am ok and make progress, other days i go backwards like today. I hope to make it to my sons school sportsday next week.

But i will take your last line, lets share the good stuff! Well i am not dead! They caught it in time. My dads kidney is working amazingly (2nd tx anniversary was while i was in the hospital, not how i imagined it but hey!), my lil boy is doing fab at school and tries to look after me. My lil girl turns 3 in a couple weeks and the day after that hubby and I celebrate our 9th wedding anniversary (we plan to renew our vows next yr to celebrate our 10th, after all we've had a rough few yrs!) My wonderful mum is here taking care of the kids while i am pretty much useless and my fabulous donor dad hopes to be up next week in time for lil ladys birthday (he is  6 weeks  out of his heart bypass op). So all in all i am so so blessed and have great stuff in my life, just wish i felt better and had the energy to do stuff, right now feels like i'll never be my normal self again. Am frustrated as recovered so quick from tx op, but this one was more major and the cut is right where i bend, so i think as ive been trying to do more, today i feel weak and in pain.

I know what u mean about struggling on for your husband and son, in hospital, the thought my family needed me was what kept me going. I do feel bad for the kids tho, especially my son who is 7 in october, as bless him he has had to deal with me having his sister early, going into kidney failure, the transplant, then i had a seizure from which i almost had brain damage (so they tell me, i dont remember a thing for four days!), then my dads heart attack and bypass, and now this latest op. He's seen me go through so much and has understood it all, ive always been honest and open, i do wonder how it has all affected him, but to be honest i think its made him a better person, more sensitive and kind to others, especially understanding not all people are well.


Are u doing anything for the 6th month anniversary? x
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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 !
Jean
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« Reply #3 on: June 20, 2014, 12:17:57 PM »

 I am just happy to hear you are happy. Would stop and tell a few funny stories, but I am off to watch my son marry the girl of my dreams. Everyone should have some one in their life like her. Happy Days. You hang tough and stay well ( or as well as can be expected ).
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One day at a time, thats all I can do.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #4 on: June 20, 2014, 04:37:00 PM »

 :waving; Hey Goth - love hearing from you!
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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
Ninanna
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« Reply #5 on: June 20, 2014, 05:09:38 PM »

Glad you are feeling good and happy GLM!

Some good news hmm.....

My trial nurse (who spent the night in the hospital for me the day of my transplants) is coming into my work at the next company meeting to share our story. It turns out I help make a product that saved her foot from amputation. If her foot had been amputated she would have had to give up her job and wouldn't have been around to help me. Sometimes you never know whose life you'll impact and sometimes it comes back one thousand fold!
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Spring 2006 - Diagnosed with IgA nephropathy
June 2013 - Listed on transplant list
Feb 4th 2014 - Kidney and bone marrow tx (both from my mother) as part of a clinical trial at Hopkins
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