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Bri in ohio
Regular Member


Date Joined Apr 2011
Total Posts : 54
   Posted 8/2/2013 6:08 PM (GMT -7)   
Hi All,
 
My son 31, went for his regular doctors appt 2months ago for hypertension
After labs his doctor informed him that his creatinine level was 2.6 ,
GFR was 30. I am very angry with the doctor. One year ago his
creatinine was 1.8 which I understand is a very high normal. He is
also  overweight and has severe anxiety issues. If the doctor had checked
for protein in the urine they   would have likely been able to stop the
damage now one year later he has seen a kidney specialist, had a
kidney biopsy and is looking at dialysis. He is falling apart , cries and
sleeps all day. I am sure this is depression and I feel as though my
hands are tied. I have been trying to find out all I can about dialysis.
So when the time comes I will be able to do whatever I can. I have
read that dialysis is very hard on the body. I have heard that there
is a 50/50 chance that dialysis patients will die within the first year
of dialysis. This is not promising. I also have read that most people
only live on dialysis for 5 years. Please if anyone is on dialysis
please write. Is this a clear picture of what my son has to look forward
to?
Jackie

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/2/2013 8:04 PM (GMT -7)   
Jackie-

Sorry to hear of your sons kidney damage. While I haven't dealt with dialysis, a friend of mine was one it for almost 10 years. She had CF and wasn't able to get a transplant.

Prayers to your family and hopefully someone who has 1st hand knowledge of dialysis will be by soon.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Bri in ohio
Regular Member


Date Joined Apr 2011
Total Posts : 54
   Posted 8/3/2013 4:52 AM (GMT -7)   
  Bill,
 
Thanks so much for your kind words. I have noticed there is not much
activity on this forum. (I am usually on the Lyme forum) This is a
awful disease. I see no  light at the end of the tunnel. I myself am 58
and this has shaken me to the core. Maybe I have read to much! My
son is looking for hope and I see none.
 
 I had hoped there were some people out there that are on dialysis that
 might have more personal experiences. The shocking thing is by the
 time you realize what is going on its to late to do anything about it.
Anyone that has high blood pressure should have a protein 24 urine
 done at least once a year.Labs are not enough.
 
Please anyone who is on dialysis please write.
Remember the decisions that your doctor makes, you live with.
 
Thank You
Jackie
 
 

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/5/2013 6:27 PM (GMT -7)   
Jackie-

Sorry I didn't get back here right away. I was roofing my neighbor's porch.

I do know of the link af BP and kidneys. I have had hyper tension since I was about 25 and when my friend was looking for a kidney I ask the doctors and they told me I wasn't a candidate for donation since I have had high BP.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 8/18/2013 8:50 AM (GMT -7)   
Hello Bri ..........
 
   Are there no other options? My doctors found an option or two options for me almost 2-1/2 years ago. Let me explain, although keep in mind I am much older than your son, and my primary problem is prostate cancer that came back - then spread to choke off the function of the urinary tract.
 
   I was admitted into the hospital by emergency in early 2011. I had passed out shortly after being carried from the ambulence to the ER ... then was out for close to 28-hours. During that timeframe, they put a dialysis port in my chest and gave me two dialysis sessions before I woke up out of my state of unconsciousness.
   Several doctors got together, many tests were made and even with a Nefrologist being a part of the team, they decided to try something else. I was in the hospital for 15-days and only had one more session of dialysis. A few months later, the port was removed. I was given some diet guide-lines ... and the kidneys were apparently functioning fairly well for a year before being admiited again into the hospital.
   In early 2012, I was back in ... this time two nefrostomy tubes were put in. Because of my weakened condition, I was in the hospital for 14-days and then into a rehab for 15-days. Three months later, the nefrostomy tubes were removed. One month later, I was back in the hospital with serious kidney problems.
   My creatine level was a little over 14 .... extremely high. They immediately placed a nefrostomy tube in for my right kidney because of the blockage to my bladder. And on the left kidney, they put an internal stent ... for the same reason. I later found that my left kidney was very weak and my right was not but the blockage to my right was much greater than to the left.
   Now ............ PLEASE ......... keep in mind ......... the blockages in my case were due to cancer spreading. That might have made a huge difference with my options.
   I have not had dialysis since early 2011, but the stent and nefrostomy tube both have maintenance issues of there own.
   Please check with your doctor, and get a second opinion if needed, for any options possible besides dialysis.
 
Wishing you and your son the best.
 
Rob
 
 
Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA for 6-years
Casodex first - then Lupron from mid-2011 to current
Zytiga from January 2012 (5-months) - PSA increase
Prednisone from early 2012 & Xgeva from mid 2012
Taxotere from August 2012 (30-weeks) - PSA from 54+ to 12+
No chemo (8-weeks) - PSA from 12+ to over 23
Xtandi start - late June 2013 ......

SoulNHealing
Veteran Member


Date Joined Jun 2013
Total Posts : 1054
   Posted 10/2/2013 1:44 AM (GMT -7)   
Sorry to hear but I can only tell you first hand what I know&have been told about this treatment plan,and thats from my sister who has been on it for 3yrs &my dad who was on it for some years. But first I can say that every plan doctors have work as long as God say they are to,because He holds the last say in it all. What man say is 5years could be 10 are more who is to say my point with that is google&research can get us in trouble at times&can be bad on our mind,was there no other treatment plan I know my uncle was told he needed to go on it. But he made the choice not to&have to take some kind of meds&there are good days&some bad. Now if this is the only treatment doctors see fit then its not how many,you have to look at thats 5years and more to come Ive also learn that the time also is up to the patient&the fight they put in. For my sister she has had many problems,and not all good days and yes she has severe anxiety from it&use to have hard time with port that would get clog but through surgery that was fix. She says iron problems come up for everyone but that can be fix by them giving iron,and yes she has been depress at times&Ive spent many nights&days encouraging her that she will be ok&came to far to give up&keep pushing. So he will need strong ppl around him to help with the push&he is bless to have you,for a extra backbone can be a true blessing&faith because as I said look at how much more time that will add to his life and help keep him here longer. Blessings

Post Edited (SoulNHealing) : 10/2/2013 2:53:37 AM (GMT-6)


8BEACHES
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/6/2013 10:50 PM (GMT -7)   
MY BOYFRIEND IS 44 YEARS OLD AND IN ICU RIGHT NOW HE IS ON A BREATHING TUBE AND DIALYSIS TO CLEAN OUT THE TOXINS . IT ALL STARTED NOV. 2012 HE WAS LOSING WEIGHT HE COULDN'T EAT MUCH OR AS MUCH AS HE USE TO. HE IS 6 FOOT AND WEIGHED 320 HE LOST 50 POUNDS IN 3 MONTHS THE PAIN GOT SO BAD WE WENT TO THE ER THEY SHOT HIM UP WITH PAIN MEDS AND ADMITTED HIM THEY DISCOVERED HE HAS PORTAL THROMBOSIS AND CIRRHOSIS. THEY DISCHARGE HIM 2 WEEKS LATER AND MADE A APP FOR 1 MONTH LATER. DURING THAT MONTH WE HAVE BEEN IN AND OUT OF ERS AND FINALLY WE WENT UP TO NEWARK UMDNJ HE HAD A LIVER BIOPSY AND THEY SAID HE DONT NEED A LIVER TRANSPLANT !! HE HAS BEEN CHECKED FOR ALL KINDS OF CANCER AND DOES NOT HAVE HEP. THE BLOOD CLOT IN HIS PORTAL VEIN HAS BEEN THERE SO LONG THEY DO NOT WANT TO TOUCH IT CAUSE IT HAS BEEN THERE SO LONG IT FOUND ITS OWN WAY TO THE LIVER . HE ALSO HAS HAD KIDNEY STONES SINCE HE WAS 8 YEARS OLD. HE HAD 18 STONES RECENTLY . HAD A APPOINTMENT TO HAVE LIPOTRIPSY DONE . WE WENT IN ON SEPT 9 2013 TOOK HIM THERE TOLD ME HE WILL B DONE IN 2 HOURS. 3 HOURS LATER THEY CAME DOWN AND TOLD ME HE IS IN ICU AND ON A BREATHING TUBE APPARENTLY HE SWALLOWED HIS VOMIT AND HAD PNEUMONIA HIS LUNG COLLAPSED HE WAS ON A BREATHING TUBE FOR 1 AHE HALF WEEKS HE WAS DISCHARGED 4 DAYS LATER CAME HOME FROM WORK AT NIGHT 2 DAYS LATER AFTER BEING RELEASED AND ON THE FLOOR ICE COLD AND CONFUSED AND HE LOOKED TERRIBLE HE COULD NOT MOVE CALLED 911 THEY GOT HIM TO THE HOSPITAL QUICKLY WHERE THEY DISCOVERED HE WAS HAVING KIDNEY RENAL FAILURE PUT HIM ON THE BREATHING MACHINE AND DIALYSIS TO CLEAN THE TOXINS OUT OF HIS KIDNEYS THEY WERE HAVING PROBLEMS CAUSE THE MACHINE KEPT CLOTTING THEY'RE NOW TRYING IT WITH HEPARIN THATS WHATS GOING ON RIGHT NOW ! PLEASE IF ANY ONE HAS ANY SIMULATES PLEASE GET BACK TO ME SO SCARED

amberbv278
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/20/2013 11:42 AM (GMT -7)   
HI. I am 35 and have diabetes and hypertension my diabetes was very uncontrolled for about 20 years but now is somewhat under control. I am seeing a nephrologist and was told in July when I had insurance that I would need dialysis with 12 to 18 months . My nephrologist started me on procrit shots for anemia then my insurance cancelled for the month of August I was told I wouldnt get a procrit shot that month because I didnt have insurance and they were expensive shots. Then, in September when my insurance picked back up I was given another shot and informed that I neeeded surgery asap to put in a dialysis port because I was 4-6 momnths away from dialysis.In September my creatinine was 6 and my nephrologist said that it wouldnt get better but at the first of this month it was 5. I was supposed to have eye surgery last wee4k but after seeing my labs my dr wanted to hold off and have a nephrologist give his opinion so he called in a nephrologist (this is my second eye surgery and he called in the kidney dr the first time as well. This is not my usual nephrologist this nephrologist isnt in the same group or town as mine) Both times I have seen this Dr. he didnt act like there was anything to be concerned about. so my concern is that my dr is trying to tap out my insurance before it runs out how high can your creatinine be before dialysis begins?
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