Porphyrogennetos

First of all, take a deep breath. PKD is a slowly progressing condition. If your kidney function is fine, it will not deteriorate from one day to the next. Do not worry too much. Stress is not good for you and your kidneys.

First thing you should target is your high blood pressure. This should be managed and controlled.

Smoking, being sedentary and/or oerweight and drinking more alcohol than recommended by health authorities are issues you can correct on your own, if they should apply. You can also start to drink more water and reduce your salt and sugar intake.

Good luck,

P.

Veryworried41 in reply to Porphyrogennetos

Thanks for the reply.Been hoping someone will. I do not smoke or drink at all.I am not overweight.I will visit my doctor and insist they start me on the blood pressure meds.Also have to work on my diet.Now that is so difficult. Has anyone found out if going vegan can help?

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Nigtt in reply to Veryworried41

There have been some studies done that imply that a better diet can reduce the progression of PKD, so I am trying to watch mine mainly from a salt and sugar perspective while trying to get my weight down. Exercise comes into that equation as well. I guess this disease just makes discipline become key to your life, which is a good thing. Your doctor might also prescribe a statin to help you with the cholesterol. For some reason that seems to accompany PKD but I'm not sure why!

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JDelve in reply to Veryworried41

I decided to go wholefood vegan a little while ago. This means to remove all processed foods, all animal products, White products (sugar and flours), and seriously limit all oils. I have recently started doing intermittent fasting and exercise a lot more (walking, and c25k). I drink at least 3ltrs filtered water everyday. It's really hard to see whether it's had any impact on my kidneys themselves, but my BP is constantly low now (117/70, when it used to be regularly 130/140s, sometimes higher) I'm hoping that in time I may even come off all meds. I've lost 3 stone, still 2 to go. I have so much more energy, I sleep better, I've not had aches in my kidneys for a while now. It's a hard lifestyle, especially when you're out and about, but I'll do the best I can, often will do vegetarian rather than vegan. But at home I'm very strict. I used to be terrible, no exercise, dreadful diet etc, and was, I think, heading for big trouble. Pains in chest, out of breath easily, asthmatic, kidneys ached all the time. Now all those symptoms are gone. Definitely recommend doing it for feelings of well being. I'm 49, still have good kidney function. Fingers crossed.

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Eyelean in reply to Veryworried41

Try the dash diet. It is recommended for high blood pressure and my Neph. Recommends it. Before starting discuss with your doctor

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Porphyrogennetos

According to the HALT study ACE inhibitors are the blood pressure drugs of choice with PKD, I believe. That's the ones whose name finishes with -il. Thanks God I tolerate those well. Some people experience side effects.

Good luck,

P.

Veryworried41 in reply to Porphyrogennetos

Thanks for the reply my doctor gave me a drug named amlodipine for the high blood pressure.I will be seeing the nephrologist in two weeks.So he said the Meds will likely be changed.I am not coping too well mentally today.I don't know why.How are you staying psychologically strong and not thinking about it .I am having a hard time not worrying.

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Anaj in reply to Veryworried41

As someone has already said, PKD is a slow progressive disease. I was diagnosed in 1987 and still have reasonable renal function and live a good normal life. There has been research into drugs which may slow down the progression of the disease, one is called Tolvaptin, so you could ask your nephrologist about this. Main thing your life is not going to change overnight

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Veryworried41 in reply to Anaj

Thanks for this reply but may I ask how old you were when first diagnosed? I know its the same with everyone. But would like to know.

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Anaj in reply to Veryworried41

I was diagnosed at 30. I had no symptoms but as a family we had just been told that my father had PKD so we all had ultrasounds and mine was diagnosed then. I am 60 this year.

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poppydolly in reply to Veryworried41

Worrying is not going to make things better and can make them worse. I have had both kidneys removed due to their size and of course now rely on dialysis. I do get fed up sometimes, especially as everything has gone wrong this year with access, but I know that my worst enemy is feeling sorry for myself especially as I have no one around me to lift me back up again. So my advice is take each day as it comes and make the most of the good days.

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Nuke24 in reply to poppydolly

Thank you for your honest statements, we are all here for you. I haven't been diagnosed yet, but CT Scans show small cysts, my side and flank pain is a low 1-2 in pain, but was in ICU 10 days ago with severe pains and dehydration. Blood work and CT Scans show very 2 small cycsts, one on kidney and one on liver. They say I have celiac disease due to an IgG level and this new diet helps, but I think it just an allergy and due to a PKD issue instead. Figuring out on my own because no Dr believes my symptoms and says it's in my head. BP is now 120/74 and 2 weeks ago it was 150/88. When is hospital my pain was so bad BP was 159/130. Once hydrated all was better, but still have swelling when eating certain Gluten friendly meals and side/back pain intermittently but overall better when eating right.

Any suggestions of the specialists to see?

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Veryworried41

Thanks once again for replying. I am 41 just found out few weeks ago.And too worried .Pain on my sides and high blood pressure are the two symptoms I have. Trying to control my diet now.Are you a vegetarian?

Anaj

No not vegetarian but watch how much protein I eat. I am taking Tolvaptan and was part of the original trial so have been on it for 10 years. I am also on BP medication. One of the problems I have is feeling bloated but as I have IBS as well it is not surprising. I am regularly seen by a renal consultant so am aware how my disease is progressing and I live as normal as life possible

Mgt8 in reply to Anaj

Hi johnu

How do you find Tolvaptin? My daughter is at stage 4 but we wondered if it was worth trying this new drug....

Has it helped to reduce kidney function loss?

Thanks, Margaret

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Anaj

I am not sure what stage it is deemed effective, your nephrologist will talk to you about that. It had slowed the progression of my disease. When I started it my kidneys were very big and my abdomen was obviously very swollen and taking the drug did shrink the size of my kidneys and I felt much better a short time after taking it. When you have s chronic illness you don't realise how ill you feel as it is part of everyday life but I found within 2 weeks of taking it I had more energy my feet didn't swell up as much in the heat, I generally felt much better. I continue to be monitored

Kenchappa in reply to Anaj

Hi,

What is the dosage of tolvaptan you started with and what is the dosage you take currently. How are you dealing with the side effects of tolvaptan?

My nephrologist has suggested me to start with tolvaptan after initial assessment so bit curious on how and what it feels

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Porphyrogennetos

Johnu,

thanks for sharing.

P.

Eyelean

I discovered I have PKD about a year ago. I am 59. I had an Ultrasound for pain in my mid chest. Discovered many cysts on liver and kidneys.. I have had back pain for years. I then got cat scan and It took me 3 months to see my Neph. Once I saw him. Got MRI. I am in monitoring mode. Blood work every 6 mths. CT every 9 months. And will see Neph. Once a yr unless conditions change. Once a week I monitor blood pressure and if I notice changes in pain or illness call doctor. PKD is a slow progressive disease and different with everyone. Once you see your Neph. You will learn more. Key is keep your kidneys healthy change your eating habits. There is lots of good information out there.

Scavotto

I knew that I had one large fibroid. I was sent for an MRI for pain in my ribs. I found out that I now have 4 large cysts inside and on the outside of my uterus, cysts on my left kidney, and my liver. The gynecologist recommends a hysterectomy, but is sending me to an oncologist first. I'm wondering if the fibroids and my uterus which is now measured at 7.3 5.1 11.0 cm has something to do with the cysts on my kidneys and liver