Hi I was told yesterday by my doc, that I have pkd. and have so many questions where do I start ? Please help.

[Kev1971]

Any information on what I can expect. I was only diagnosed yesterday after going for scan for kidney stones.

My kidneys seem to be functioning ok. How quick is the progression etc. ?

[slimta]

Hi, I was diagonsed in my twenties and am now 47, PKD runs in my family. I seem to be lucky and have good kidney function at about Gfr 48. I do not have a consultant at the hospital as I was discharged a couple of years ago as they don't need to see me whilst all is well. I have blood tests done each year and as long as they carry on being ok I will just carry on. I also have PLD.

Do you know what type of pkd you have ?

I was really scared for a long time about the future but having PKD does not necessary mean you will become ill , my doctors predict that my kidneys will function ok until I'm in my seventies!!!

The pkd charity have a chat room you could ask questions on there, I do on the occasions I need some reassurance. The chat room seems to be mostly people that have had transplants or waiting transplants but please don't worry as there are a lot of people out there just like me who mostly carry on without any life changing issues.

My consultant, when I was diagnosed told me that pain did not necessary mean the was anything going wrong it's just due to the size the organs get. Mine are quite large, so my shape is a bit pregnant looking but the older I get the less people ask when my baby is due, thankfully.

I m starting to ramble now, I never have anyone to talk to about this so sorry for going on,

Always pleased for a chat if you like

Tracy

[Twinkle30 in reply to slimta]

Hi Tracy,

I am not a sufferer of PKD but my husband is and we recently lost my mother in law to the condition. We have just discovered my husband has PLD too, like yourself. I was wondering were you under two consultants, a liver and a renal? Also are you aware of how big in size your cysts are?

We are trying to look into both PKD and PLD but currently the liver part is a tricky one to gain much information or people's experiences of. We want to build as much information and research together for our 6 year old daughter as so far the conditions has not skipped a generation and we can't ignore them as past family members have. Also my husband is now 40 and with his family history the next 10 years are vital to him watching his lifestyle etc more closely than he already does.

We have also been told in the past that the PKD can definitely be almost out lived with the right care but there is still a question mark over whether the PLD is the same, as so far our experience is not of that.

Have you found any helpful websites about PLD?

Right I will stop bombarding you with questions now!

I would like to hear from you though.

Thanks

Laura

[slimta in reply to Twinkle30]

Hi Laura

I don't see a consultant for PKD or PLD I just see my GP for blood tests each year. I am 47 with a Gfr of 42 so doing ok. I had a scan last year and the largest cysts on both kidneys and liver were 4", so quite large

I was diagnosed when I was in my twenties after requesting to be tested. My dad had cysts on his kidneys, liver and spleen. I have two brothers and two sisters and just me and my sister have the cysts. I have four children and one has got cysts.

I used to see a consultant for Pkd once a year but was discharged until my GFR reaches a lower level. I have never seen anyone regarding PLD.

On the whole I am we'll, I eat healthy, run 3 x week so hopefully will stay well.

I wish I could help but I really struggle to get any info. I do go on the PKD Charity yahoo community, the people seem supportive and knowledgable so you could try them.

I am always happy to chat if you like, It is nice to talk to someone that I am not going to worry if you know what I mean . If I talk to family they get worried so its difficult to voice how I am feeling at times .

Sorry I stop now, good luck and keep in touch

T

[Twinkle30 in reply to slimta]

Hi Tracy,

Thank you for replying to me message. I completely understand about you not wanting to talk to other members of your family, my mother in law was the same but it could of saved her life if she had told us and we were able to support her even more to get the correct treatment.

Right this next bit is going to be hard to read for you but please do read on and I really hope it will help. My mother in law died this summer at the young age of 64. The last six years before her death she was admitted on a yearly basis due to her liver cysts but was never under a liver specialist only under her renal consultant (she had a transplant kidney that was working, strong and healthy). Her cysts would bleed and she end up being in hospital for weeks being given antibiotics and painkillers. Over the years her tummy became swollen (looking pregnant) and she was in discomfort and pain on and off. Her cysts were about 6" when she started to become short of breath occasionally. All this time her liver function was normal and she still didn't see a liver specialist and was only guided by her kidney consultant. On her third admission three years ago, my husband tried to insist that his mum seeked the advice of a liver specialist but she was scared and stubborn and resisted but also still her renal consultant just kept saying " your liver function is fine, the pain is just the liver cysts bleeding and it will subside soon."

Well to cut the long story short, in spring this year she was rushed to hospital again as the cysts had burst again but this time she had extreme breathlessness but still after a couple of weeks in hospital she was discharged and told to take painkillers at home and rest up. She did seem to recover but also we are not sure how much she hid from us. Then finally at the end of May she was rushed into hospital again but this time to ITU as her breathlessness was extreme. This led onto her being transferred to Kings College Hospital where the shock on the Liver specialist's face and quite frankly the rest of the Intensive Liver Care team said it all. Her cysts had now been 18cm -20cm big for around 2 years but one had pushed through her diaphragm and collapsed her lung. Over her 8 weeks in Kings she endured 4 operations, the initial one being to cut away the big cysts and drain the smaller ones. The rest were emergency operations as she had gone so far and her body was giving up. After her 8 week battle we sadly lost her as her body couldn't fight anymore. My husband spent every day at her bedside and quizzed the Liver specialist greatly about the condition his mum had developed. The outcome of the situation was if she had been referred and monitored and appropriate treatment was given, she would still be here today

We are very quickly discovering that there seems to be a great focus on PKD but PLD is and possibly the silent killer. We are now on a quest to get my husband properly monitored for PLD, as we know that PKD can be outlived but as I think I said before can PLD? Also all the information you find is on PKD and there seems to be such little awareness of PLD. We really hope by me putting this message on an open forum that we can make people aware that PLD needs to be monitored by the correct health specialist as much as PKD is.

We are in East Kent and this is what we have experienced, I would be really interested in what area you are in, as it seems each health care trust have very different procedures and staff of course!

If you have got to the bottom of this feed, thank you for reading and I hope you can take something from it, to be proactive about fighting this condition head on and realise it can not be ignored.

Thank you.

Laura

[Starling in reply to Twinkle30]

Hi, thanks for sharing this. I was diagnosed last year, aged 55, after a hospital admission, with PLD caused by PKD and you are right, there is very little information available on PLD. At first I was told to focus on my kidneys, even though I have not seen a kidney specialist yet, only a liver specialist. It seems that they don't do anything until it shows up on the tests but from what I have read online and in journals it seems that nothing shows up on the tests until you are mid stage 3 of CKD. (My sister has recently been told that she is in stage 4 CKD, she also has PLD and diverticulitis (another side effect). I have been following my own healthy eating strategy of reducing as much as possible: caffine for kidneys and liver, dairy for the liver, meat for both, no alcohol etc. I was very poorly with the flu last year and felt I couldn't breathe when lying in bed. I asked the doctor if it was because of the PKD and he said no but after reading various people's experiences online, I now believe that it was because of the liver cysts, my largests cysts are 8cm (the size of oranges) and as I am only 5ft tall, this will also have an impact. Thank goodness for the internet and for sites such as this. I have found some useful PLD sites and would be happy to share these with anyone, but as you say, they are quite rare.

[Twinkle30 in reply to Starling]

Hi Starling,

I think the thing is, is to not be afraid of questioning the doctors. My husband recently visited a renal consultant who was intent on commenting on his liver and trying to phob him off and not refering him to a liver doctor. They are very different organs and react very differently to the cysts. We had to really push for the liver referral but it mustn't be ignored. If you are unhappy with your care go back to your GP and get them to refer you to a different doc and if they won't get a different GP etc! 8cm cysts are a fair size for a 5ft person and should be monitored at least. I am not sure where you are in the country but have heard Birmingham has one of the largest liver units in Europe or Kings has also got a very good name. On Faceback there is some great groups. 'Living with polycystic kidney disease' and 'PKD charity UK'. Both pages talk about liver and kidney.

[RIBBONPINK in reply to slimta]

Hi i was diagnosed with pkd a few years ago my consultant put me on nightly antibiotics for rest of my life blood test done recently my kidney function down waiting for ultra sound to check cysts i get pain, tiredness dizziness i do have other health problems on top as well.can anyone in this group help on what to expect i am 59 yrs do i need a diet to help?

[scott123 in reply to slimta]

sounds like you are PKD2 which is much less severe,, keep to a low protein diet, flood your body with water, veg and fruit

[Veryworried41 in reply to slimta]

Hello ,

How are you now?Hope all is still well and your kidney functions still okay?I know your post is a few years old but you said you are available for a chat.

[Kev1971]

Thanks Tracy,for you quick response.You have put my mind at rest a little. I am back at the doctors Monday and hopefully will have more of my questions answered.I was in total shock when told and couldn't think of any questions at the time and then made the mistake of looking on the net and only seeing kidney failure and transplant etc.Bit scary to say the least. But knowing now it can take years to develop to later stages and can live a quite normal lifestyle feel a bit happier.

Thanks again Kev

[slimta in reply to Kev1971]

Hi Kev, we just need to be a bit careful with things like high blood pressure, I have taken tablets or high blood pressure for years with no problem. I have four children so went through four sussesful pregnancies with no trouble. I started running about a year ago and now run 5k 3 x a week still no problem I was a bit worried about all that jiggling about annoying my cysts but all seems fine. I have unfortunately passed pkd to one of my children but the other three are clear. My dad passed it to two out of five of his children so seems to be getting less dominant.

I would make a list of question tonight and take it with you to your doctor, is it a consultant or gp?

I always take a list if I have questions and a notepad to take notes so my mind does not play tricks on me when I get home.

I always right the Gfr as this indicates function, I like to know where I m with it all, I am well but still like to be informed

Its always good to take someone with you in my opinion and please dont feel that any question is silly. I ask some really silly things sometimes but the doctors have always been really good and once asked I can stop worrying. For example can I fly, can I run, can I take lemsip(that one was a good one as the answer was no!!!!!!)

I really dont think about pkd very much although I do have some periods of worry for no reason, usually in the run up to blood tests.

I lead a normal life, do everything I want to do.

Even the people that have problems and need dialysis usually have access to mobile dialysis machines and I have known some to do it at work during lunch time

Let me know how you get on tomorrow

[Starling]

It is so encouraging to read everyone's experiences of PKD and PLD. I felt so alone when I first found out and had a long list of questions when I went to see the specialist but he didn't want to know. He was a PLD specialist and didn't even know I had PKD (he hadn't read the letter). I thought this was a one off but the second time I saw the PLD specialist he didn't know I had PKD either, until I informed him and he read the letter on screen. He explained that he had come from Cardiff to 'get the waiting list down'. I can only say that I did not feel reassured. I explained the above to my GP who said that we will wait until after my next appointment with the PLD specialist, after which I will probably have a scan of my kidneys and liver again and this will show if the cysts have grown. I have done my own research and, as mentioned above, many sites do discuss treatment further down the line. It is so good to just talk to people who are at similar stages to myself. My daughter (aged 25) has just been diagnosed with potential PKD and is seeing the PKD specialist in December.

I find it difficult to understand why my daughter and older sister (Stage 4 PKD, she is 68) see a kidney specialist and not a liver specialist but I see a liver specialist and not a kidney specialist. We all live in Cumbria. I have gone on for longer than I intended to but really this was just a thank you for sharing.

[Hidden]

Start with basics about what the disease does and how bad it is in your case. The disease wildly varies so there are wide answers. No question is so stupid so dont be shy and build up your relationship with the consultant.

[sandra6085]

I am 29 and was told at age 22 I have pkd. I worry all the time because I am adopted and know nothing of my family history except for having ofd and pkd could be caused by it. I have pain all the time still drink caffeine because of my ADHD and eat pork sometimes of then that it is junk just to settle my stomach or some days I just don't eat. I scare myself with what I read do to not knowing what stage or what type I have. I never really saw a doctor about it so have ever question you can think of. If you have a living donor and not on a transparent list can you still get their kidney?

[YasmeenK in reply to sandra6085]

First, go see your GP and ask him to refer you to a PKD specialist who will monitor you yearly.

If and when you need a transplant, and you have a healthy living donor, it means that you can have your transplant sooner. The donor does not have to be on a donor list.

If their kidney is not suitable for you, then there is a paired exchange scheme for that too.

I have PKD , PLD & PCOS. Cystic baby I call myself. Good sound mental health is important and keeping positive is crucial for me.

It's difficult at times to keep positive, as future is uncertain.

I try, at the moment it's a massive challenge as my mother is waiting for a donor, soon to have kidney removal and be placed on dialysis. Keeping her positive and myself positive takes alot of energy.

[Camila77]

Hi Everybody! My English is not the best. I was diagnosed with PKD when I was 30 years old in Italy. I’m 41 years old living -thanks God- in The US, since I arrived here I got a good insurance. Unfortunately I started to feel some pain and difficulties to breath and to sleep (need to change positions). I’m getting pretty depressed lately since I made an Internet research (Mayo Clinic, Cleveland Clinic, etc.) and I read about the average life for both kinds of pkd: 53 and 73 years old.

Considering my situation, mine is the shorter one.

By then (when I was 30-36):

I decided not to have kids since I discovered the PKD. My father passed away when I was 5 and I really miss to have him, specially because of Mom, have been harder for her even if she never complained.

The way I was thinking by them was “If I have a child now, in my 50s I will be probably sick (my Italian nephrologist told me that), so... I don’t want my teenagers kids having me sick, seeing your mother sick it is literally heart breaking to me; at this point I told my ex husband that I was not going to have kids.

Nowadays I think I did right.

Medicine is being changing constantly but still we don’t have cure. Nonetheless I just read that in early stages you can stop the cystic’s increasing in order to prolong the good health in your kidneys. There are like 3 treatment that may work.

I have had a super famous nephrologist for years here in Miami and he never told me about treatments. Wish I had made a research before. Now is pretty late.

I’m seeking to see doctor in the Mayo Clinic and try experimental treatments if possible.

I cried very often because of this. Love life and even if I don’t panic with the idea of dying, I still appreciate a lot life. Don’t want to hurt my mother, my brother, my husband, my cats and every person that love me.

Well, all this to tell you to make researches and always go for a second nephrologist opinion that can offer to you a treatment.

Good luck everybody here! 🍀 God bless you!