Just diagnosed: I have been just been... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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Just diagnosed

athenat profile image
14 Replies

I have been just been diagnosed with PKD. I'm 46 yrs old with 2 kids, 19 and 11 yr old autistic son. My GFR turned up at 52 last month that's what sparked my PCP to do test. I'm devastated. I'm devastated for my autistic son, not even for myself. I mean what is he going to do without me? I have to get everyone tested now. I'm not going to do HD . I am an NP and I see what it has done to people. I am the major bread winner in my family. How will I work? If it wasn't for my son I would just crawl up in bed and wait for death. I am normally good at fighting things off but how do you fight off something you were born with? And no one ever told you about. So far I only know my uncle was on dialysis, got 2 kidneys and rejected both within a week. I am so dead. That's exactly how I feel. Sorry for the bummer post. I am trying to keep my head but I really can't this time. Any words of encouragement from anyone hopefully will help me.

14 Replies
texham profile image

Hey - Can I say don't worry? I don't have a single case of Kidney Disease in my entire family. Every time I tell a Dr. that I get the surprised look. The good news is a couple of things- not everyone's kidneys decline at the same rate. Some never reach dialysis. Also a new drug hit the market Tolvaptan, and slows the progression by 35%. I'm 49 and gfr is at 17. I think I was at 52 9 years ago. My kidneys are the size of footballs but I'm not on dialysis and still functioning pretty well although strenuous tasks have had to be minimized. Also your uncle having 2 rejected Kidneys is no indication that would happen to you. Everyone is different. I know how it feels to be in this situation but I don't feel it's a death sentence and have met a lot of people from being on dialysis for 10 years to having a transplant for 20 years. Get as much knowledge as you can, get the RIGHT Dr., eat healthy, and as hard as it is to do just relax and take it one day at a time.

athenat profile image
athenat in reply to texham

Thank you for your response. Your words have given me some hope and have eased my devastation. Yesterday I told my 19 yr old and he told me. Ma, it is what it is. If we all have it. We going out with a big shabang....lmao. That right there made my day along with your words. I have been reading alot so I can be prepared. Information and knowledge help you make the best choices. Again thank you and please keep us updated. As I will as well. It feels good to connect to people.

smithjen profile image

I have liver and kidney cysts and have reached the good age of 76 soon to be77. .so please don’t worry it is manageable .i am ready for dialysis .The doctors are great and will help you .i feel happy that it was discovered My father died early not knowing .

athenat profile image
athenat in reply to smithjen

Thank you for your kind words. I am trying not to worry and will continue to live life as much as I can. Yay, 77 ! Hopefully I will get there one day. Please take of yourself while on dialysis. Take a blanket with you and dress warm if you can. Rest as much as you can. Then party hardy.....lol. Thank you.

Im 46. I too have pkd and 26 other conditions. Most ate linked to pkd. I felt like you did in 2001. My brother was just 15 when he was diagnosed. The feelings that you have do subside but most have them when diagnosed. There are two types of adult pkd. You need to find out which one you have. Type 1 is more aggressive than type two which often means a fairly normal life span. That said tolvaptan helps keep like my brother off dialysis etc. He still works. You also need to find out if any other organs are affected as it can spread. Commonly the liver is affected but rarely does it lead to transplant of other organs. Read up on the disease with the most accurate being pkdcure.org. you also should consider getting your children tested now. Early testing helps you get help from school and colleges. Low stress desk jobs are best for any affected persons to aim for. I couldnt due to late diagnosis whereas my brother had help at college and uni to become a teacher. Keep on a balanced diet and refrain from contact sports. Blood pressure monitoring will also help slow progression. Stress and blood pressure being minimised slows cyst growth as does staying away from nsaid painkillers like naproxen, ibuprofen and diclofenac. The more you read about the disease the better. Join the national kidney federation. Its free but gives you help support and a magazine. You are not alone. One in 500 people in the uk have it. Get a good relationship and talk to your gp. You also need to get life policies for yourself and children now rather than later. Uni, sport, travel and stuff is possible. I was an accountant with three degrees and we both had extensive hobbies. My brother travelled a lot more inc to the himalayas so you see it doesnt mean a death sentence. Good luck. Talking to patients and gps will be most help.

athenat profile image
athenat in reply to

Thank you soo much for you kind words. I think I am over the depressive state and angry stage. But I am still dumbfounded. I guess it takes awhile to get used too. I have been reading up on it and some of it is making me feel a tad bit better. At least I have slept better for the past few days. Again, Thank you for reaching out.

Mrssoot profile image
Mrssoot in reply to

To a point I agree accept for work. Do a job you enjoy. Hubby only works shorter hours ( can't function before 10am) but loves his job. After brain tumor removal he was told he wouldn't work again. He's 9 years down the line and still working. Listen to your body, but also push the boundaries

Im on dialysis and have been for 8 years. I have type 1. Type 2 attacks much later.

bunty_f profile image

Hi, I think it is really natural to feel terrified at first but this is not the death sentence that you fear. I was diagnosed in my 30s and am now 57. I have an EGFR of 17 and in the next year will go on the transplant list but I am still working (director of a regenerative medicine company! ‘Doctor cure thyself I hear people saying’!). I can still do everything I used to do but just get tired more quickly. I am planning to go skiing twice this coming winter! I have two sons who are now 26 and 23, my eldest is on the Asperger scale and I feared that he would be dependent on me but I am lucky and he is doing brilliantly in a computer company and seems to have plenty of friends.

So my message to you is to live life to the full.

Good luck

athenat profile image
athenat in reply to bunty_f

Thank you for your kind reply. I feel much better these days. I have changed my diet a bit and my new labs results are not as bad as before. I am hoping this will be a very, very slow progress. I am no longer depressed and life has a new meaning. Again, thank you for taking the time to respond. This board has been such a help.

cdrogers5 profile image

What I can tell you is that my Uncle has this disease, he is like 80, no dialysis or kidney transplants. My dad is 73, same with him. I am 52 diagnosed 6 yrs ago. You have a lot more living left. You are not dead. You need to learn to manage it. My GFR went from 44 to in the 60s. I give God credit along with a change in diet and drinking 100 ounces of water a day. Dont lose hope.

athenat profile image

I am learning to manage. I am no longer depressed. I actually got tired of being depressed. And I thank God, that I am one that is able to get out of depression, because some people really can't. My blood test have improved and I changed my diet a bit.

Life has new meaning to me. This has brought me closer to God (because sometimes as people we kinda stray away due to soo many responsibilities of day to day living, I give him credit for always taking us back...lol).

Posts like yours give me hope. Because the biggest draw back with this disease is not really having anyone to talk to, most people don't get it. And I don't blame them either. It's ours to deal with and we all can just do the best we can.

Thank you for your reply. It means a lot. The power of connecting with people is beyond even through internet. A voice makes a difference.

cdrogers5 profile image
cdrogers5 in reply to athenat

Glad to hear it and yes getting diagnosed also gives new meaning to life, can make you appreciate it more and draw you closer to your Creator. My dad recently went to his doctor and he told him water is key. When we get dehydrated, a hormone is released which tells your kidneys to produce cysts, so stay hydrated.

Mrssoot profile image

When my hubby was diagnosed at 21 he was told he might make it to 60. He's 55 and has only just started having issues with pkd. He has brain tumour acromegaly caused by tumour, polycythemia and ruptured gut to keep us occupied. Just go with the flow, and keep smiling. It's not a death sentence just a different angle to life. We don't have children together partly due to risk of passing it on however my hubby has children from previous who is also pkd. Try not to stress about it as it doesn't help. Enjoy life do things now, don't put them off

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