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Author Topic: Newbie to site from So Cal  (Read 2705 times)
4thsiblingondialysis
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« on: January 24, 2011, 05:51:41 PM »
Hi everyone!

I just found this site and I am so grateful there is somewhere I can go to get great information and inspiration from others when I have a meltdown grieving my once healthy active life. 

I'm amazed at some of your stories, what you've been through, and yet you keep such a positive mental state.  I don't know how you do it!

I would love to connect with some people who have been on HD for some time to ask questions to as I continue to adjust to this new life.
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ESRD due to PKD
Hemodialysis 16 months
Living Donor Transplant 3/27/12
Have 3 siblings all who have had transplants
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #1 on: January 24, 2011, 05:57:27 PM »
wow 4 siblings on dialysis! how does your parent(s) handle that? i would love to know more of your background story. my bro and i both have PKD and were both on the big D. i feel fortunate to have someone in my life who gets it
how do u stay positive while continuing to find folks to be tested and they turn out not to be a match?
xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
4thsiblingondialysis
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« Reply #2 on: January 24, 2011, 06:13:14 PM »
Hi there!

Actually my 3 siblings have all had kidney transplants and are doing well.  I'm the only one on dialysis right now.  Thank God both of my parents are no longer living (my mom died at 39 of a brain aneurism caused by PKD when I was 14 and my dad passed about 15 years ago).  My dad would have been broken hearted if he had to watch his fourth child go through this!

I'm grateful for my siblings who "get" what I'm going through but it's been more than 15 years since they were on dialysis so their memories are a bit faded when I ask them for information.  That is why I am so grateful for this website!

Staying positive has been a challenge for me because I was an athlete before all of this happened and to be truthful, I've had quite a few meltdowns on the bathroom floor since this all started.

I look at what you've been through on your signature and wonder how you keep going!  How do you?
Logged
ESRD due to PKD
Hemodialysis 16 months
Living Donor Transplant 3/27/12
Have 3 siblings all who have had transplants
looneytunes
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« Reply #3 on: January 24, 2011, 06:19:48 PM »
Hello and welcome to IHD.  Glad you joined us but sorry you have a reason to.  It sure sounds like you and your family have been through a lot.  My hubby is on home hemo (with NxStage) and has been on dialysis since 2007. 

I'm looking forward to seeing your posts.  Hope you come back often.   :welcomesign;
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"The key to being patient is having something to do in the meantime" AU
Rerun
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Going through life tied to a chair!
« Reply #4 on: January 24, 2011, 07:45:16 PM »
Hi and welcome to IHD.  Your siblings are probably saying "oh, now you want to know........."  HA  Just kidding.  I'm sorry you have to know.  We are here for you and any questions that you have.  If you want to vent, we are here for that too.

Rerun, Moderator       :welcomesign;
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YLGuy
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« Reply #5 on: January 24, 2011, 09:31:33 PM »
 :welcomesign;
Welcome! There are many people here with a wealth of knowledge.  I am also in SoCal. I live in Orange County and am coming up on my 2 year anniversary on HD. 
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galvo
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« Reply #6 on: January 24, 2011, 09:43:04 PM »
G'day fsod and :welcomesign;.
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Galvo
peleroja
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« Reply #7 on: January 25, 2011, 07:47:42 AM »
Welcome to the group.  Have I got a deal for you.  My friend and I run a renal support group that meets the third Saturday of every month at Kaiser Bellflower, 9400 Rosecrans, Bellflower, from 2 to 4 pm.  You don't have to be a Kaiser member to attend.  We have snacks, great people and lots of experiences.  You can IM me for more information.  In the meantime, I'm glad you joined!
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4thsiblingondialysis
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« Reply #8 on: January 25, 2011, 08:58:02 AM »
Thank you all for your warm welcome! It's so nice to meet all of you and I can't thank you enough for reaching out to me especially since I had a meltdown yesterday.  It appears that little things get to me now that would never have bothered me in the past. I seem to have lost the where with all to deal with even the smallest things these days. Dd you have that experience when you first started dialysis?
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ESRD due to PKD
Hemodialysis 16 months
Living Donor Transplant 3/27/12
Have 3 siblings all who have had transplants
monrein
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« Reply #9 on: January 25, 2011, 03:03:00 PM »
 :welcomesign; to IHD.  I hope (and feel quite certain) that you will find this site as valuable as so many of us do.  I hope that you can join your three sibs in the transplant club also...in the mean time, hang in there and keep as physically active as you possibly can.   :grouphug;
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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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #10 on: January 26, 2011, 03:21:03 AM »
Quote from: 4thsiblingondialysis on January 24, 2011, 06:13:14 PM
Hi there!

Actually my 3 siblings have all had kidney transplants and are doing well.  I'm the only one on dialysis right now.  Thank God both of my parents are no longer living (my mom died at 39 of a brain aneurism caused by PKD when I was 14 and my dad passed about 15 years ago).  My dad would have been broken hearted if he had to watch his fourth child go through this!

I'm grateful for my siblings who "get" what I'm going through but it's been more than 15 years since they were on dialysis so their memories are a bit faded when I ask them for information.  That is why I am so grateful for this website!

Staying positive has been a challenge for me because I was an athlete before all of this happened and to be truthful, I've had quite a few meltdowns on the bathroom floor since this all started.

I look at what you've been through on your signature and wonder how you keep going!  How do you?



I had a friend once who told me "Man R you are a warrior and you don't even know it." I guess that is how I have been getting by is being in denial and not thinking what I am living with is any more overwhelming or tramatic then what other folks are living with. Are there days that are hard..of course but I allow myself to be sad and cry but I don't allow myself to wallow for days. Being on dialysis has been the ultimate test of my will versus a transplant but I have hope things will work out. Take it one day at a time.

xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Cordelia
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« Reply #11 on: January 26, 2011, 06:43:15 AM »
Hello and  :welcomesign;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
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