I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
November 23, 2024, 04:53:09 PM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: General Discussion
| | |-+  My Daughter		 0 Members and 3 Guests are viewing this topic. « previous next »
Pages: 1 [2] Go Down Print
Author Topic: My Daughter  (Read 7412 times)
Cordelia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2012
« Reply #25 on: November 06, 2011, 04:22:09 AM »
Thanks!     :flower;     :grouphug;

I'll be curious to see how long I wait for that phone call    ;)
Logged
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
jshabanian
Full Member
***
Offline Offline

Posts: 102
« Reply #26 on: November 06, 2011, 08:57:42 AM »
We were told the same thing about PDK and not having it diagnosed in our children do to difficulty getting health insurance later on in life.  In Canada you don't have to worry about that!  At least you can rest assured that your children will always have access to health care. 

I was also told that there are often cysts on kidneys and it doesn't always mean that they are polycystic kidneys.  Some cysts can be "normal".  At least this is what I have been told.  I wish you and your family the best.  Here is to a healthy future!!!
Logged
Cordelia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2012
« Reply #27 on: November 07, 2011, 05:25:46 AM »
Hi Jshabanian, the health insurance in Canada isn't a problem, it's the life insurance.

My doctor said too that children can develop cysts and it never amounts to anything serious into adulhood. But my nephrologist said that being I have a history of the PKD, he felt (and I feel) she should be monitored closely. I hope it never amounts to anything serious for my daughter    :bow;   
Logged
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
rsudock
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1351


will of the healthy makes up the fate of the sick.
« Reply #28 on: November 07, 2011, 11:35:13 AM »
Cordelia has the neph refered you to a Genetic doctor? My family has kidney disease (ARPKD) and my sister has a baby and they found cysts on the kidneys. From they way the cysts looked and where located they don't think it will be a problem, but we did go to a genetic doctor to get tested. I need to go and pick up the results....that way you can know for 100% if she has it or not...

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
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2012
« Reply #29 on: November 08, 2011, 09:27:40 AM »
No, I haven't had any referral for a genetic doctor-yet.  I could keep that in mind and see what my daughter's nephrologist will say once we see her.     :thumbup;
Logged
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
Cordelia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2012
« Reply #30 on: December 04, 2011, 02:23:41 PM »
Update:  I got the referral this past week-I was a little surprised actually, it was a letter in the mail, not a phone  call.  It's scheduled for the 24th of February in Toronto at Sick Kids! Seems like a long time away yet but I know it will come fast!      :cheer:     :thumbup;
Logged
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
willowtreewren
Member for Life
******
Offline Offline

Gender: Female
Posts: 6928


My two beautifull granddaughters

WWW
« Reply #31 on: December 04, 2011, 02:54:55 PM »
Yes, indeed. That time will fly by.

Keep us updated....

 :grouphug; :grouphug; :grouphug;
Logged
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. :)
okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #32 on: December 04, 2011, 04:09:04 PM »
 :grouphug; :grouphug; :grouphug;
Logged

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
Cordelia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2012
« Reply #33 on: December 05, 2011, 04:04:47 AM »
Thanks     :grouphug;     :grouphug;
Logged
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
beachbum
Jr. Member
**
Offline Offline

Gender: Male
Posts: 86
« Reply #34 on: December 05, 2011, 09:54:41 PM »
I don't have kids yet but this is one of my worst fears. A strange conicidence is that my wife's borther was born with the exact same condition I was born with except he is 18 years younger than me and had more advanced medical care and the doctors were able to save his kidneys. She also has a couple of cousins that were born with the condition, one of them had to have a kidney removed like I did. I'm scared there is a high probability my kid will end up with this condition. The only good news is that we'll be aware and no to watch for it so hopefully if it is an issue the doctors will be right on it before it becomes a major problem.
Logged
glochis
Newbie
*
Offline Offline

Gender: Female
Posts: 13
« Reply #35 on: December 06, 2011, 06:34:03 PM »
I have spent the last 34 years fighting for my daughter's welfare, while keeping a positive spirit so she and her siblings could enjoy life.  I kept a "them vs us" attitude and knew we would find a way to beat what ever came along.  Thank God medical treatment keeps inventing new things to give us hope.  Kidney failure is our latest trip, but my daughter is the strongest, upbeat 98 pound tiger I have ever known.  I am sure you will find the strength to get thru this with your little girl.  I am so sorry for your daughter's diagnosis.
Logged
Mother of 39 year old childhood cancer survivor.
Living with the long term effects of chemo and radiation. 
Kidney failure the latest twist on the horizon.
Cordelia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2012
« Reply #36 on: December 09, 2011, 05:39:09 AM »
Thanks so much, Beachbum and Glochis     :grouphug;      Thanks so much for your encouraging words     :cuddle;

I had always wondered about my disease skipping my kids generation......I had always wondered. The fear is real of passing it down and I can totally understand where you're coming from Beachbum     :cuddle;
Logged
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
Cordelia
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2012
« Reply #37 on: February 24, 2012, 06:51:31 PM »
Update:

My husband and I took my daughter to Toronto Sick Kids Hospital. Wow, that's just an amazing hospital! We were really impressed with the staff and the doctor (neph) who saw my daughter, Meghan, for the very first time today.

Even though I don't have a family history of my PKD, since I'm adopted, the doc thinks my daughter has likely inherited my PKD.

He suggested genetic testing for my daughter and seemed quite puzzled by the fact that her twin sister,  does not have cysts since they are identical twins. So he will eventually do genetic testing, likely won't be this year, but next he said.

Other than that, he or another neph team doctor will see likely seem them both next year.
« Last Edit: February 25, 2012, 03:10:11 PM by Cordelia » Logged
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
Pages: 1 [2] Go Up Print 
« previous next »
 
Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!