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PDJbrown
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« on: March 20, 2009, 08:17:18 AM »
Hello:
I am a new member to this forum. I was diagnosed with a Glomerulonephritis in 2006.  I underwent treatment with chemotherapy and steroids for 18 months. In May of 2008, my kidney function deteriorated further and I was told I would have start dialysis. That was a bitter pill to swallow, as I was in denial thinking if I stuck to my diet, all would be well. However, that was not the reality and I did not want to hand in the towel so I went along with my nephrologist's orders. I had the catheter put in and started dialysis in June.

It has a been a big change, with challenges. Being young I feel at times that my life is a mess, at other times I want to live each day to the fullest by laughing more and taking time to "smell the roses" more often. I am completing my doctorate this year while working full time, so I tell myself that I will press on and not dwell on the glass being half empty.

Thanks for having me on this forum.  I look forward to the discussions and sharing.

Best Regards,
JB
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Judith
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Might as well smile
« Reply #1 on: March 20, 2009, 08:33:02 AM »
  :welcomesign;  to a place where others know exactly what you're having to deal with.  My doctorate was interrupted by ESRD when I was 26 but life has been good for me and I hope you will find that for yourself also.   :cuddle;
« Last Edit: March 20, 2009, 08:54:58 AM by monrein » Logged
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
willieandwinnie
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« Reply #2 on: March 20, 2009, 08:41:40 AM »
 :welcomesign; JB. You have found the perfect place and we hope to hear more from you. Lots of great information and even more support here. You are not alone.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
David13
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« Reply #3 on: March 20, 2009, 08:52:08 AM »
Welcome!   :welcomesign;

You will be glad that you found this site.  You will find a great deal of both useful information as well as some fun, too! 

We hope to see you posting often! 
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“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
paris
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« Reply #4 on: March 20, 2009, 09:15:41 AM »
 :welcomesign;  JB.  We are glad you found this great site.  I think you will enjoy all the information and support the forum offers.  There are many here who can relate to your story.  I hope you post often and share more of your journey with us.   Welcome to the family!



paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Zach
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"Still crazy after all these years."
« Reply #5 on: March 20, 2009, 10:05:34 AM »
Welcome to our community, JB!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Joe Paul
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« Reply #6 on: March 20, 2009, 10:18:50 AM »
Welcome JB, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
Rerun
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Going through life tied to a chair!
« Reply #7 on: March 20, 2009, 11:49:42 AM »
Welcome JB.  Life is not over.  You will find many options on this site that you can think about for your treatments.  Hang in there.

                                                   :welcomesign;
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MandaMe1986
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« Reply #8 on: March 20, 2009, 02:15:17 PM »
Why hello JB, welcome.  We are happy to have you. I know what its like to be young and facing all of this. But yoru right life isn't over, and the glass isn't half empty. We have our whole life ahead of us and we need to make the best of it. And I know that we all on this site will be there for you when ever you need it.  So stick around it helps a lot.  Take care

~MandaMe
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
G-Ma
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« Reply #9 on: March 20, 2009, 02:19:01 PM »
 :welcomesign;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
kellyt
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« Reply #10 on: March 20, 2009, 03:49:35 PM »
 :welcomesign;    This site will calm your nerves and your heart.  You've landed in a safe place with tons of support and knowledge!  So glad you found us!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
boxman55
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« Reply #11 on: March 20, 2009, 04:25:48 PM »
Hi JB, Welcome to the site. Please take some time to review some posts and have a little fun

Boxman,Moderator
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
MIbarra
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Stopping to smell the bluebonnets
« Reply #12 on: March 20, 2009, 05:34:28 PM »
 :waving; Hi there! Hope you find this site as useful as I do!
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Cadaver transplant April 29, 2007
TeenHatesDialysis
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« Reply #13 on: March 20, 2009, 08:11:48 PM »
 :welcomesign;

Wow! Working full-time and completing your doctorate while on dialysis.  :2thumbsup;

Please share your energy secret  :secret;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
RichardMEL
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« Reply #14 on: March 21, 2009, 12:09:44 AM »
G'day JB and welcome!! I feel your frustration and mixed emotions about being young(er) and facing life with such an illness and mode of treatment - it sure puts a kinky in life plans and ambitions and stuff. What I do is, like you, try and be as positive as possible. I figure if you can't find humour and laughter or even focus on the "small" pleasures then what's the point? Besides I'd rather aim to be positive about things than curl up in a ball (that's my cat's job!) and be depressed about it - being upset, morose and focusing on "why me?" sort of questions won't make me get better and they sure as hell won't help me FEEL better - and I do believe there is something to the talk about having a (generally) positive attitude can aid your wellbeing and how your body deals with what it is going through.

Of course it's no picnic and there are times when I wonder what the point is and why keep struggling? I'm not going to sit here and write that it's just as easy as clicking your fingers and "don't worry be happy" - that's unrealistic... but one thing I am sure about and confident to share is that IHD is a place that CAN help with a great bunch of people who are supportive, caring and have some idea of the sorts of things YOU are dealing with. So, when you need to.. drop on in. vent... share experiences/wisdom... chat in the room.. heck even flirt with me (Well maybe that goes against the whole "stay positive" thing?!?!  :rofl;).... either way we're here for you and look forward to your contributions!!!

 :cuddle; :cuddle; :cuddle;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
kimcanada
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WWW
« Reply #15 on: March 21, 2009, 06:07:30 AM »
 :welcomesign;
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MiSSis
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« Reply #16 on: March 21, 2009, 08:34:13 AM »
Welcome JB to what I feel is the greatest site for information and support regarding your new "life".  You'll find as you spend more time here that you're making friends for life with people who really understand your situation. 

You mentioned having a catheter so I was wondering if you have chosen peritoneal dialysis as your method of treatment.  If so, there's a special section for those on home dialysis.  Be sure to check it out as it's got some great information from other home patients like myself. 

Best of luck to you and I hope you return to share more information with us.    :waving;
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"Keep your face to the sunshine and you will not see the shadows."  Helen Keller
kristina
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« Reply #17 on: March 22, 2009, 04:21:32 AM »
Hallo, PDJbrown,
                       thanks for your Introduction. Please tell me: why were you treated with chemo and steroids after being diagnosed with glomerulonephritis? To stop the kidney deterioration? Did you receive 2 Retuximab-Infusions and during two weeks and 3 Methylprednisolone-Infusions or was it something else? I was diangosed with chronic proliferative glomerulonephritis and had the above mentioned treatment, it did not help but induced a flare-up of SLE/MCTD. Kind regards from Kristina
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #18 on: March 26, 2009, 08:49:29 AM »
Welcome to our community, JB!  So glad that you found us!  So sorry that you have had to face these challenges in your life!  What area of study are you into?
This is an excellent place for information and support, as you will discover. It is much more than just a website - it is a genuine family. :grouphug;, with lots of caring and sharing people.  So take advantage of all this site has to offer.  Keep reading and keep posting.



Bajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
Sluff
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« Reply #19 on: March 26, 2009, 07:43:01 PM »
Welcome to ihatedialysis.com,

 It's normal to feel really down when you're facing a big change in your life. Don't be too hard on yourself for being upset, just help it fade away by learning all you can (this site is a goldmine), and I'm sure you'll find things will be more manageable as time goes on.  Knowledge will help you feel more in control, it'll help take the power out of the "unknown" aspects of what you're dealing with, and you'll be amazed at the strength you'll find in yourself!

Sluff/Admin
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