1. < Kidney & Bladder

PKD and Severe Right side Abdominal Pain

Posted by kzeiss @kzeiss, Mar 15 10:17am

My son is in the most extreme pain in his mid-lower right side of his abdomen and pain in his stomach in general. He also has a severe right side headache and is nauseous and vomiting. The ER ran every test they could (blood, urine, sampled PD fluid, blood cultures, Cat Scan) and could not find the cause. He is bent over double with pain. He has had his gall bladder removed a few months ago. Of course, only 6 pain pills. He has Polycystic Kidney disease and is on peritoneal dialysis. He has had many burst cysts but never this kind of pain. Any suggestions or insights would be greatly appreciated.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 15 11:45am

@kzeiss I'm so sorry to hear about your son's pain as it is presenting. Just my humble opinion here, but it sounds like they didn't do all they can for him, at the ER. Has he been in contact with his dialysis clinic, and doctor? This can be an emergency, with long reaching effects. What did the sample of his PD fluid show? Does he have any issues with bowel movements, or the color of his stool? Is there a possibility the PD catheter is causing an issue?
Ginger

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1 reply
kzeiss | @kzeiss | Mar 15 12:27pm
In reply to @gingerw "@kzeiss I'm so sorry to hear about your son's pain as it is presenting. Just my..." + (show)
@gingerw

@kzeiss I'm so sorry to hear about your son's pain as it is presenting. Just my humble opinion here, but it sounds like they didn't do all they can for him, at the ER. Has he been in contact with his dialysis clinic, and doctor? This can be an emergency, with long reaching effects. What did the sample of his PD fluid show? Does he have any issues with bowel movements, or the color of his stool? Is there a possibility the PD catheter is causing an issue?
Ginger

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Great questions: That is our problem and challenge ...PD fluid is negative, no problems with bowels. Went to dialysis center meeting for review last Monday and they said they did not think was his tubing. Additionally, severe headache on right side.

Still searching for pain doctor in Denver area who understands PKD.

Thank you for your response. Seems we need a magic wand!

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Mar 15 1:37pm
In reply to @kzeiss "Great questions: That is our problem and challenge ...PD fluid is negative, no problems with bowels...." + (show)
@kzeiss

Great questions: That is our problem and challenge ...PD fluid is negative, no problems with bowels. Went to dialysis center meeting for review last Monday and they said they did not think was his tubing. Additionally, severe headache on right side.

Still searching for pain doctor in Denver area who understands PKD.

Thank you for your response. Seems we need a magic wand!

Jump to this post

@kzeiss My husband recently had gall bladder surgery, and is a kidney transplant recipient. So, I understand your concern. Have you been able to check in with the internist who did the surgery? What are the liver enzymes showing in the bloodwork? Is his stool regular color, and not grayish tint [meaning possible liver/bile issue]. Possible scar tissue concern from the gall bladder surgery? Just thinking of different possibilities here....
Ginger

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1 reply
stephanierp | @stephanierp | Mar 16 10:19am

Hello, I am sorry your son is having such a painful time. I have PKD and was transplanted 5 years ago. I had cysts burst, which were painful, but your son's situation does not sound like that to me. I do not have medical background but the symptoms you are describing sound more acute.

Have you tried the PKDcure.org site? They have a lot of resources, including clinics of excellence for PKD care. I looked up clinics specializing in PKD in Colorado and found these two clinics: University of Colorado Anshutz Medical Campus in Aurora (303)724-7797 and Colorado Kidney Care in Lone Tree ( 303) 799-8760.
https://pkdcure.org/coe-search-results/?search=colorado
PKD can cause anurisms, so when I suffered from headaches at one point, my doctor did brain scans to insure I did not have an aneurism. I did not, but it is a very real side-effect of PKD and should be checked out if your son is having headaches.

My only other piece of advice is, continue putting your son in front of different doctors until they figure out what is wrong. There were times I was VERY difficult, and left one doctor to go to another in a different group or a different hospital. That self-advocacy is why I am alive today.

I am sending you love and strength.

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1 reply
kzeiss | @kzeiss | Mar 16 10:20am
In reply to @gingerw "@kzeiss My husband recently had gall bladder surgery, and is a kidney transplant recipient. So, I..." + (show)
@gingerw

@kzeiss My husband recently had gall bladder surgery, and is a kidney transplant recipient. So, I understand your concern. Have you been able to check in with the internist who did the surgery? What are the liver enzymes showing in the bloodwork? Is his stool regular color, and not grayish tint [meaning possible liver/bile issue]. Possible scar tissue concern from the gall bladder surgery? Just thinking of different possibilities here....
Ginger

Jump to this post

As always, your insights are very helpful. We will ask these questions. Thank you so much.
Cathy

REPLY
kzeiss | @kzeiss | Mar 16 1:50pm
In reply to @stephanierp "Hello, I am sorry your son is having such a painful time. I have PKD and..." + (show)
@stephanierp

Hello, I am sorry your son is having such a painful time. I have PKD and was transplanted 5 years ago. I had cysts burst, which were painful, but your son's situation does not sound like that to me. I do not have medical background but the symptoms you are describing sound more acute.

Have you tried the PKDcure.org site? They have a lot of resources, including clinics of excellence for PKD care. I looked up clinics specializing in PKD in Colorado and found these two clinics: University of Colorado Anshutz Medical Campus in Aurora (303)724-7797 and Colorado Kidney Care in Lone Tree ( 303) 799-8760.
https://pkdcure.org/coe-search-results/?search=colorado
PKD can cause anurisms, so when I suffered from headaches at one point, my doctor did brain scans to insure I did not have an aneurism. I did not, but it is a very real side-effect of PKD and should be checked out if your son is having headaches.

My only other piece of advice is, continue putting your son in front of different doctors until they figure out what is wrong. There were times I was VERY difficult, and left one doctor to go to another in a different group or a different hospital. That self-advocacy is why I am alive today.

I am sending you love and strength.

Jump to this post

Thank you all the research you did, for sharing your story and for your great suggestions. I especially welcomed your last paragraph. Sometimes we feel we are fighting a disease and our medical system too.We all need to be our own best advocates. It is very reassuring to know there are knowledgeable and caring people in the world who understand this disease like you.
Gratefully,

Cathy

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Mar 16 11:44pm

@kzeiss this will sound really over simplified but here goes anyway, has your son considered appendicitis? (mid-lower right side abdominal pain, nausea, vomiting)
Sometimes the simplest, most obvious thing is the thing. Hope your son gets a diagnosis and treatment soon!

REPLY
1 reply
kzeiss | @kzeiss | Mar 17 11:00am
In reply to @cehunt57 "@kzeiss this will sound really over simplified but here goes anyway, has your son considered appendicitis?..." + (show)
@cehunt57

@kzeiss this will sound really over simplified but here goes anyway, has your son considered appendicitis? (mid-lower right side abdominal pain, nausea, vomiting)
Sometimes the simplest, most obvious thing is the thing. Hope your son gets a diagnosis and treatment soon!

Jump to this post

Thank you, Cheryl. That is so true. It was a doctor in a small hospital who correctly identified his infected gall bladder. He had problems for almost 2 years prior to that. I think when you have PKD there is so much pain all the time that it is easy to dismiss the "everyday" problems that non-PKD experience.

Gratefully,

Cathy

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