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PKD Discussion Forums - View topic - Challenges

Challenges

Talk to family, friends, caregivers and others who know and support someone with PKD.
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Please note: This site contains user-submitted content, comments and opinions, and they do not necessarily reflect the views and opinions of the PKD Foundation. Information shared in the forums is not medical advice. Please consult your nephrologist or health care team for information and guidance specific to your health.
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Posts: 59
Joined: Fri Oct 11, 2013 11:38 am

Challenges

Postby Moderator » Tue Oct 15, 2013 2:03 pm

Caregivers have unique challenges supporting and caring for someone they love. Let's start with identifying some of the many challenges and create new topics for discussion.
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

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Joined: Fri Dec 20, 2013 8:20 pm

Re: Challenges

Postby ganncamp » Sun Dec 29, 2013 12:27 pm

I'm a patient, rather than a care giver, so I'm not sure I'm "qualified" to post here, but I'd like to share one challenge my husband and I faced when I was diagnosed.

There's a history of PKD in my family. My grandmother dialysed my grandfather at home for several years. My mother and an uncle have both had transplants. The implications of PKD were painfully clear to me. When I was diagnosed, I was devastated. But my husband, who had had very little experience of PKD just didn't get it.

I didn't understand the depth of his ignorance until we were watching a program about kidney diseases, and dialysis patients were talking about having to sit there for 4 hours. "Four hours" he said, "how do you go to the bathroom?"

PKD was a vast yawning gulf that had just opened up under my feet. Talking about it - about what it meant and would mean - where too painful. But that's exactly what he needed me to do to be able to give me the support that I so desperately needed.

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Re: Challenges

Postby Moderator » Thu Jan 02, 2014 12:59 pm

Thank you so much for your post and yes, you are very qualified to post here! This is exactly what we were looking for - what challenges our caregivers face so that we can make sure we have the resources they need. Thank you for sharing your experience!

Here is a link to our website where we have provided some of the resources available to assist family members, caregivers or friends of someone with PKD. https://www.pkdcure.org/i-know-someone-with-pkd

Also, we are bringing back PKD National Convention this year! We will be bringing together experts from across the country to share their knowledge about living with PKD. More information will be available soon. Here is a link to our website where we will continue to provide information about the convention. https://www.pkdcure.org/advocate/national-convention

Again, thank you for sharing. This will be helpful to others to know how important communication is between patient and caregiver.
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

Christina

Re: Challenges

Postby Christina » Fri Jan 17, 2014 6:52 pm

Can PKD be caused by something other than genetics?

Mbrsokol

Re: Challenges

Postby Mbrsokol » Fri Jan 17, 2014 10:05 pm

My husband has been dealing with the fear of PKD since his father died of the disease in his early 50s. Seven years ago he had an ultrasound that confirmed cysts, he just had an ultrasound that again confirms cysts but the previous films are "unavailable" so we don't have a comparison to judge the progression of the disease. All his labs came back in the normal range. his BP was 130/80 "in office" but is consistently lower when taken at home. Dr. wants to start him on cholesterol meds and BP meds even though all lab values are normal. We are heading to a nephrologist but I can't understand being on BP and Cholesterol meds at age 37 if not needed , and why isn't a change in diet or at least a awareness of diet to keep BP and cholesterol normal be a better treatment choice. Is there any other benefit of meds. or can strict diet and exercise be enough in early stages?

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Location: Virginia

Re: Challenges

Postby VAPKD » Sat Jan 18, 2014 1:40 am

@Mbrsokol
A BP reading of 130/80 is really good for someone with PKD at age 37. For people with no symptoms, fear and stress about the disease can be the biggest challenge. Fortunately, we've come a long way in helping people with the disease. A change is diet can be really good for everyone.

It is possible there could be a benefit from the medication. There is currently a very big ongoing study looking at blood pressure medication and PKD called "HALT PKD". Here is some information on the trial: http://clinicaltrials.gov/show/NCT00283686

I'm not a doctor, and I also don't know your husband or the situation. So I can't really comment on cholesterol/BP medication usage. However, people with PKD have a higher risk of having heart problems. Maybe look into getting some testing done to see if there is a problem there.

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Re: Challenges

Postby Moderator » Tue Feb 18, 2014 6:18 pm

Thank you for your questions about PKD and genetics! Here is some information from pkdcure.org, Learn Section under Just Diagnosed that explains how some patients with ADPKD may not have a family history of the disease.

Because PKD is an inherited disorder, the dominant form of the disease (ADPKD) is passed from one generation to the next by an affected parent. An ADPKD parent has a 50% chance of passing the PKD mutation to each of his/her children at conception - having a child who inherits ADPKD with each pregnancy, no matter how many children a person has. In some families, all the children are affected; in other families, none are. Many families with multiple children will have affected and unaffected children. Although most individuals with ADPKD have a family history, scientists have also discovered that approximately 10 percent of the PKD patient community became affected through spontaneous mutation.

Two genes that cause ADPKD have been identified. About 85% of people with ADPKD have mutations in the PKD1 gene, located on chromosome 16. The remaining 15% of individuals have mutations in the PKD2 gene located on chromosome 4. There are no other PKD genes that have been identified to date.

The disease caused by ADPKD1 is more severe than that caused by ADPKD2. Individuals with mutations in the PKD1 gene develop cysts, hypertension and loss of kidney function at an earlier age compared to the ADPKD2 gene.
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

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Re: Challenges

Postby Moderator » Tue Feb 18, 2014 6:29 pm

Blood pressure control is very important because uncontrolled blood pressure, over time, can be damaging to the kidneys and is also a risk factor for heart disease and stroke. There is some debate about how low blood pressure should be however, as a rough rule, blood pressure should be at 130/80 or lower. The HALT PKD study is a clinical trial that has studied rigorous (110/70) vs standard (130/80) blood pressure control. This is a very important study and will help us understand target levels and best medications for blood pressure control in ADPKD patients. PKD patients are sometimes prescribed a statin to reduce the risk of cardiovascular disease.

If you have questions about medications, we always recommend that you discuss the risks and benefits with your health care team.
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

Maggz

Re: Challenges

Postby Maggz » Wed Apr 23, 2014 1:27 am

My best friend was diagnosed at 17. He went in for regular check up for football. New dr found HBP and PKD. He was adopted, so there was no prior knowledge. Turned out his bio mother & her mother both died of PKD. He started HBP meds. He was fairly healthy all his life. Active, a job he loved, travelled all over world, loved cooking for friends & family. Kidney failure hit 2 years ago at age 47. When it hit, it slammed the brakes on his life as he knew it. He now lives with 77 yr old mom, has no income, and due to laundry list of complications, no longer participates in day to day life. He sits in a chair or lays in bed.He goes to dialysis because he is no longer strong enough to handle bags for PD. He has chronic, devastating fatigue, renal anorexia, renal bone disease, porphyria, and due to a reaction to gentomycin, has permanent ear canal damage and is in therapy to learn how to move his body again. PKD has taken everything from him. I am dedicated to getting information on PKD and live donorship to folks.

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Joined: Fri Aug 15, 2014 10:01 am

Re: Challenges

Postby dealingwithPKD » Sun Oct 26, 2014 1:32 pm


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