lukesmum

[lloydastoby]

hi my son was admitted to hospital he is 29 with high blood pressure off 250 he was took to the freeman hospital where he stayed for two weeks , he was told he had cysts on his kidneys but they are not sure what the cause off these cysts are they mentioned numerous things to us dyalisis and kidney transplant they have scared the living daylights out of us , they have scheduled a biopsy for 17th july to see the cause off these cysts they have mentioned polysistic kidneys but that is genetic and neither my husband or myself have this , my son is overweight and not very active ,he gets very tired easy and is on lots off medication any feedback would be greatly appreciated

[Hidden]

Hi,

Not all cysts on kidneys are caused by Polycystic Kidney Disease, PKD. There are situations where simple cysts can form. There is a great article from the NIH/NIDDK website attached for you to read about. It may provide you with enough questions to have your son ask at the next doctor's appointment. Also, there is a good possibility that he will need to switch to a kidney-friendly meal plan. He should also ask the doctor to help develop an exercise program for him to begin to be more active and progress forward as he gets stronger and builds up his energy level. Eating healthier and more kidney-friendly meals will be a big step towards this goal as well.

If your son is in the USA have him go to the davita.com website and look for a Kidney Smart class near where he lives. It's a free 90-minute class and he will have many questions answered. If he lives outside the USA, I'd suggest he read through the Kidney Modules at this website and learn what he needs to know about having health issues with his kidneys.

kidneyschool.org/mods/

niddk.nih.gov/health-inform...

[lloydastoby in reply to Hidden]

thankyou for your help i will read all i can on this matter as we feel our world has been turned upside down , he is only 29 , we are at the hospital today as his bloods are improving , im still new to this as he was only told 3 weeks ago that he had cysts on his kidneys ,would you advice him to have the biopsy as ive read so much about it we are so unsure to go ahead with it or not i am very interested in the diet , as the hospital have not helped us at all with this thankyou for your help

[lloydastoby in reply to lloydastoby]

we have been to the hospital today they have said his kidney function is still getting better , but im concerned that they are saying he has polysistic kidney desease without any off his family being tested we have all had kidney function tests and blood pressure took and we have all come back as normal we are all waiting for an unltra sound i was under the impression that this is genetic any feedback would be grateful thankyou

[Hidden in reply to lloydastoby]

Every family has to have an initial patient with PKD and then it can become genetic from that point on. Do the tests and let the physicians determine exactly what he has and go from there. Hope everything goes well.

[lloydastoby in reply to Hidden]

thankyou

[SN23 in reply to lloydastoby]

The FDA recently approved Tolvaptan for the treatment of ADPKD. Please check if this is something that will help your son.

[lloydastoby in reply to SN23]

I will look into this thankyou the doctor has just phoned to say his creatine levels have dropped again which is good news they don’t think the biopsy will go a head while his levels are dropping hopefully we will get somewhere soon and will understand the reason for this happening

[SN23 in reply to lloydastoby]

Very happy to hear👍

[SN23]

Hi,

I can well relate to how you feel. My son was 28 years old when he too was admitted to the ER with blood pressure close to 250. And likewise we were told about the possibility of transplant and dialysis in the near future. Needless to say we felt the world crashing around us. This was over three years ago and he has since gained back his strength and improved his kidney function. As Mr Kidney said diet control and excercise definitely help. Hang in there. This too shall pass and you will be in a better place.🙏💕

[lloydastoby in reply to SN23]

thank you for your reply sn23 this has turned my our worlds up side down ,they want to do a biopsy as they are saying he has cysts on his kidneys , his blood pressure has now gone down not as good as it should be but so much better than it was , they are saying his bloods are improving , so i take it this means his kidney function is improving ,he feels ok in himself just gets tired but im sure thats all the medication he is on ,we are back this morning for more bloods to be taken hopefully more improvement can i ask did your son have a biopsy , so pleased your son is on the mend

[SN23 in reply to lloydastoby]

Thanks so much. My son did a biopsy. It went smoothly for him. He also responded well to the blood pressure medication. Your son’s blood pressure will be brought down slowly. Too much fluctuation and sudden drop to normal was being avoided in the treatment plans for my son too but over the years it has stabilized. Weakness can be a result of the medication or iron level or even vitamin d levels. He may also feel generally low. And the doctors are not very helpful in this regard- at least that’s my experience. You will have to be strong for your son and hold out hope and yes it’s a good idea to do all the research and finding out. Davita classes are also open for caregivers. So you could do it for your son for now. They are offered online too. NIH also has research papers/ studies on its website. You can google for your specific issues. And ofcourse keep the diet as simple as possible and build on excercises starting small like walking. The kidney function will of course improve because at that blood pressure level he was experiencing an acute event.

So grateful that your son is receiving all the needed care and you are reaching out proactively to find answers. Believe me doctors may not have all of them. Communities such as this are a huge resource and I am glad you are here. Stay strong👍🌸 Praying for your son🙏

[steve680]

I would suggest getting the biopsy so you both know exactly what is causing his high blood pressure. Knowing the cause will help determine the treatment path your soon needs to take. In my case, I had similar uncontrolled high blood pressure and it beat up my kidneys pretty bad. I had an MRI done since the doctors at the time suspected a blocked artery to the kidneys (there was no blockage), but I never had a biopsy. You should follow up with all doctor's appointments and have your son take his oral blood pressure medications as prescribed. His doctors might continue to prescribe more blood pressure medications to get his BP back down to where it should be for someone his age. You should ask his doctor (I'm assuming he's been referred to a nephrologist at this point) what his "target" blood pressure should be. Keeping the blood pressure well maintained will help him regain some of his kidney function. I'n my case my function improved from stage 4 to stage 3 (almost stage 2) after getting it under control. You should also ask your doctor if your son is anemic based on blood tests, and if it's severe enough , there is a drug they can give him will make him less anemic. If your son is less anemic, he'll feel better and have more energy. There's also a good book named "Coping with Kidney Disease: A 12-Step Treatment Program to Help You Avoid Dialysis" by Mackenzie Walser, M.D. It lists all the things you should be doing to slow the progression of renal failure and hopefully stay off dialysis as long as possible. You can get it on Amazon. Hope this helps!

[lloydastoby]

thankyou steve for your help , i will ask this morning if luke is anemic as he is so tired all the time , and will also get the book from amazon , as he was only told about this 3 weeks ago all this is still new to me ,so as much help would be greatly appreciated , the doctors have not advised us on any diets or what to avoid in certain foods , at the minute luke has diffrent doctors tending to him all saying different things its still a bit confusing thankyou for your reply

[Sdtagoo]

I would ask for a nephrologist consult, make list of questions to ask, and do your research.