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PKD Discussion Forums - View topic - Living with Polycystic Kidney Disease

Living with Polycystic Kidney Disease

Connect with others who are living with PKD and share stories and encouragement.
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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.
Posts: 2
Joined: Thu Oct 13, 2016 1:38 am

Re: Living with Polycystic Kidney Disease

Postby BaoTran » Thu Oct 13, 2016 2:05 am

I 've known i have PKD 15 days ago because of fewer (39*C) and pain in my back ( both side of kidney ) .
My father was gone at 44 and my grandmother was 58, i knew that is 50% i would have it but i am very disappointed it happens at my age (25), it is a death sentence for me.

Currently,the doctor said my kidney function is ok but i can see that cysts are already quite big (dmax on my left is 59mm and 40mm on other side) and 2 stones in both kidney(6mm and 8mm) .
I feel i only have few years to live before my kidney fail and I am really scare to consume food(especially animal meat), dont know what i should eat and avoid. :cry:

jerry

Re: Living with Polycystic Kidney Disease

Postby jerry » Mon Dec 19, 2016 1:01 am

Ok, so I found out about my PKD when I was 25. My mother found out she had it and told me I should get checked then next time I get a physical.
Now I'm 47 with a gfr of 15%. I seem to go down in steps. Say, I was at 32% for at least 6 months and then I dropped to 27% and stayed there for a while and now I'm @15% function.

My BP is a bad joke. My meds are jacked as high as they're allowed to give me and as I told my Nepherologist, "lower spectrum High range is my normal". Your "normal" leaves me ready to pass out. I can hit 200/170 first thing in the morning if i don't take my meds for a day yet I'll feel totally fine. Silent killer, indeed!

With that in mind I asked for a time line based on his experiences. In his experience, barring dialysis and transplant; 9 months without controlled BP & maybe 2 years with controlled BP.

Me: I'm not going to fight and struggle with this disease. I take my meds, sure, but when the whistle blows - I'm going Home. Bye-Bye!
My decision was only strengthened after watching all that my mother went through just to get high enough on the list to warrant receiving a transplant. Then the transplant failed and her last 10 days of life were painful and miserable. Believe me, that's the super sugar coated version of her story.

My pain isn't too severe and I've prescription narcotics if/when I need them. I'm always thirsty but I urinate regularly. No swelling in the feet or ankles yet. I am experiencing more than usual fatigue.

I've have decided that I'm done working. I can survive with what I've earned and still have some fun. I've decided to start visiting people; Family, Army buddies, etc. Everyone needs a retirement. I do NOT want to work till I die. So that's what I tell people, "I'm retired". :D
Mostly I'd like to be more available for my 14yr old daughter. That in itself is challenging as she lives with her mother and she's at the age where I'm not as important as I used to be. Ah well.

Otherwise, as most have stated, you'd never know I was sick just to look at me.
I've learned from reading these posts, some over a year old, that everyone is effected differently. Knowing so has its pros and cons. And so. I'm sharing my narrative so there's one more post for the next person with PKD that chimes here has a little more insight.

Happy journey everyone!!

Jerry

Bluegirl

Re: Living with Polycystic Kidney Disease

Postby Bluegirl » Tue Mar 28, 2017 10:55 am

I too have PKD. I actually found out by mistake in 2003, but was told nothing could be done for it so I ignored it. In 2015 my GFR had dropped to 12, which I found out by accident again when I went to urgent care for diverticulitis. I was referred to nephrologist and the journey began! I purchased a program with advice on how to raise GFR. I followed it and raised GFR to 17. Unfortunately I lost my insurance the end of last year so was unable to go for 3 month appointment. When I got my new insurance and went in my GFR had dropped to 11. I figured it would be low due to falling off my diet over the holidays. So I was referred for evaluation for transplant. I can tell you that has been an eye opener. Not too many people want to give you a kidney and I have a very large family. Needless to say, I have been down, even tho I know everyone has their own lives to worry about, it is still disheartening that no one calls, no one offers. My doctor had advised me to "get the word out". I am a very private person, so this was hard for me to do but I put it on Facebook. Imagine the feeling when you don't get much response! Some days it is just overwhelming and all I can do is cry. So worse than the disease is the mental wear and tear on me. Try to stay positive but sometimes it's really hard.

oceandive1957

Re: Living with Polycystic Kidney Disease

Postby oceandive1957 » Sun Jul 23, 2017 10:03 pm

I was diagnosed with 'degenerative kidney disease' to start with. that is what PK used to be called. That was 55 years ago when I was 5. It was discovered when I had appendicitis, my mom was first told i had a kidney infection and blood in my urine. That night my appendix ruptured. So mine was discovered thru another illness. I began taking penicillin at that age for my chronic infections. I took it for the next 20 years until my body said 'enough' and developed an allergy to it. I then became pregnant with my first child which resulted in Toxemia and a long hospital stay while pregnant. I was then placed on sulfa drugs, Bactrim DS, which I took for the next 20 years until my body said 'enough' again and I developed an allergy to that medicine. I then had my 2nd child which resulted in constant UTI's, hospital stays, kidney stones, false labor and a miserable pregnancy.

I do not have health insurance so I pretty much treat and care for my own symptoms. I keep a prescription for Pyridium, pain pills, and I am now on Cipro which is the only infection med left on my list that I'm not allergic to. I started out with the traditional cranberry juice cure, but developed severe heartburn from it after 20 years. I now buy up numerous watermelons in the summer and extract the juice from them, freeze it and use it for infections and stones throughout the winer. Note: It works better than cranberry juice.....I developed and allergy to contrast after 30 years of xrays so they could see the progress of my kidneys. On top of having PK, I was also born with a horseshoe kidney, which means my kidneys are grown together to form one big kidney. I had an intestinal blockage 20 years ago and they had to do exploratory surgery. They made notes in my chart of what they observed while having my abdomen open. The notes state that my kidneys are located attached to my spine, the right one is hypertrophic and the left side is atrophic and only half the size of the right side.
I have had at least 23 kidney stones removed, and have saved a prescription bottle half full of stones that I pass in my urine and catch with the 'hat' and strainer in my toilet. I have all 3 types of stones.
My back constantly hurts and my kidneys feel like they weigh about 30 lbs each. I have now developed yet another problem. I have began having drops of bright red blood in my underwear from my urethra. Menstruation stopped 30 years ago due to hysterectomy. I am extremely concerned about not having the ability to keep and medical watch on my kidneys due to no insurance. I live with the fear of dialysis or transplant or failure. My sister has Pk as well and had her left kidney removed with the pregnancy of her first child. Pregnancy is very hard on the kidneys with PK.
I have now developed scoliosis and have very weak bones. I cannot take calcium supplements due to stone formations. I get a stone with a glass of milk. It's a catch 22 situation.
Having this disease is something you have to live with. I had no idea that it was hereditary until I had my first child, which also has PK, and now her daughter has it also. She had her first UTI at 3 years old. There is much more known about PK now than there was available in 1966. I probably would have not had children if I had known the severity of PK. You hear this words spoken, hereditary, but it takes on an entirely different meaning when you see you have given it to your children and grandchildren.
After reading your posts, it appears that we all have different degrees of problems and symptoms. Some worse than others, but we all have a disease that could potentially take your life at any given time.

AMC2017

Re: Living with Polycystic Kidney Disease

Postby AMC2017 » Sat Sep 23, 2017 9:59 pm

Hi everyone
My name is Alexandra and I live in NSW Australia. I am 61 and have polycystic kidney and liver disease.I discovered I had this disease when in my early 30's and after having had 2 children.
I am the only one in my family to have PCKLD - I drew the lucky straw!

Until I went through menopause at about 58, I had not had any real issues - kidney stones -yes; kidney infections - yes; but since menopause I have grown an enormous belly - 3 years ago I looked 4 months pregnant, now I look 9 months pregnant. I had a burst liver cyst at the end of last year, and in February this year decided to 'retire'. I can no longer sit or stand for any length of time without becoming seriously uncomfortable. My cysts are pushing up against my lungs so I am always short of breath. I am always tired. My last scans show my liver reaches from upper abdomen ( pressing into diaphram) down to pressing into bladder. Strangely enough my kidney and liver function is still ok. I am stage 3b.
The depression is the worst aspect of this disease. Knowing that there is nothing to be done, having to live with this incredibly ugly body, not being able to buy clothing... do you know what pregnant women wear these days? ( nothing a 61 yr old can wear!) knowing I will die without a mate to support me.
And the fear and the guilt that my children or grandchildren may at some stage be diagnosed with this disease... it undoes me.

No-one has dared broach the subject of sex in this forum, so now I will. As an older female sex is impossible! All I would like to do is have face to face sex with someone I love and my body does not allow it - any weight or pressure on my belly is painful, any weight or pressure on my lungs means I cannot breathe. I loathe my body and could not imagine allowing anyone to see it naked. For me this inability to be intimate is the saddest.

My heart goes out to everyone with this disease. xxx

Vankat46

Re: Living with Polycystic Kidney Disease

Postby Vankat46 » Mon Oct 16, 2017 8:57 pm

So I just got diagnosed with PKD autosomal dominant. I’m in the military and the process is really slow. So I don’t know much about my diagnosis. Right now my stomach is swollen and I have bad pains and it seems like I have an air bubble. I don’t have a doctor to ask questions. I don’t know if it’s normal or if I should worry. It’s really nerve racking to just not know what I should watch out for. Can anyone help me or guide me. My member that does have it past away so I don’t
Have any other resources.

markd

Re: Living with Polycystic Kidney Disease

Postby markd » Sun Oct 22, 2017 4:51 pm

Hi Vakat - where abouts are you? It would be good to go and see a Nephrologist in your part of the world if you can. If you're like me and you found out by accident/incidentally, I can understand how shocked you must be. I was told I had kidneys that were 17cm and 21cm long (normal size is around 11-12cm I believe). Generally PKD seems to be a slowly progressing disease that seems to start effecting most people in their 40's with decline of kidney function, but there are also plenty of incidences where this starts earlier or later (doesn't seem to be the norm though). Given that there is no cure, and the only official treatment (tolvaptan) is not available everywhere, a doctor would want you to start on "renal protection".

For me this involved getting my bloods checked, and my blood pressure. I was told that for now my kidney function appears to be normal (so I guess stage 1). I was prescribed a statin to control cholesterol (I've heard positive things about statins and their potential as a treatment for PKD so was happy to get this) as well as an ARB for blood pressure, as my blood pressure was at around 150/100 (Im 35 years old). On the medication my blood pressure is now in the region of 130/85, but I get some really nice readings on occasion like 117/75. I also try to exercise to keep fit.

Other things you should definitely try to incorporate into your lifestyle:

1. Stop smoking if you smoke - this is bad for your kidneys
2. Lower the salt in your diet
3. Drink more water

There are a number of trials on the go, one of which is looking at the effect on water of slowing down the progression of PKD due to it being a vasopressin suppressor. I don't go insane on the water intake like some people do, but I keep about 1.5 litres of the stuff at my desk to drink during the day. I started a blog to keep track of research being done, but I haven't updated it in a while - need to do that >.< its at pkdandme.com if your interested.

Other than the above, there isn't too much that you can do. The number of people reaching ESRD with PKD is tricky to try and understand by age. Alot of research indicates the median age as 53, while other stats say that 50% of people will have kidney failure by 60, and 60% by 70. Try to get a view on how your kidneys are functioning now if you can.

There are 2 ways you can look at this:

1. Is to be nervous, depressed, and angry
2. Is to overcome that and live your life to the fullest - I never valued time as much as I do right now, and we're all in a better position than people out there with more serious diseases and less time left!

Owleye

Re: Living with Polycystic Kidney Disease

Postby Owleye » Sat Jun 02, 2018 11:10 pm

Re: Living with polycystic kidney disease
DID THIS FORUM START OUT AS A Q&A SESSION FIRST POSTED BY A KID IN SCHOOL DOING A PROJECT ON PKD?
WELL THEN, ALLOW ME TO POUR MY HEART OUT…errrr... MY KIDNEY OUT? (BAD JOKE!!!)

I am a 35 years old man living with PKD in a third world country. I am the eldest of three sons. I have known that my mother and most of her sisters have PKD since I learned about the disease in medical school. But I never cared about it and postponed diagnostic tests till 4 months back when my hypertension caused me severe occipital headache and palpitations and feeling of impending doom. Both kidneys are riddled with cysts (some 5 cm or more). Kidney stones, of course. I once tried to donate blood 5 years ago and was told I have hypertension and cannot donate blood. I knew in my heart then that I had PKD. I was 30 at the time.

I lived spontaneously. Life before was full of successful work, good friends, booze, cigarettes, chat (Chata edulis) and a host of girlfriends (whom I pushed away telling them that I cannot be tied down due to the risk of having kids with PKD. They seemed not to mind it as much as I did - "I am in love with you, not your kidneys", they said).

Do you remember the “sock and buskin”? Thalia and Melpomene? The laughing face and the weeping face? I am talking about the masks of comedy and tragedy in Greek theatre.
Well, here is the comedy or the tragedy (depending on your perspective):
I am engaged to be married (she knows, don't worry). My society requires me to do so. The pinnacle of achievement – The Family Man!
Scared shitless of passing it on to my future children (this would be comedy if I turn out to be infertile, haha). I still smoke and drink occasionally. Eat red meat (‘cause I love it!). Exercise on a regular basis (an old habit). I take lisinopril (BP looks good for now)
I wished if I could die drunk, with a cigarette in my hand, listening to Blues...But I have to be strong for the children I may have. Save money. Stay healthy as long as I can. Build a house for them to live in so they would never go wanting. Give them good education. Blah blah blah…
Life is like that. Everyone knows it. Nowadays, I pray I die in my sleep.

“You have to take the good with the bad, smile with the sad. Love what you got, and remember what you had. Always forgive, but never forget, learn from your mistakes but never regret. People change, things go wrong, but just remember life goes on.” - Chime

P.S. My mother and aunts are still doing well (no transplants yet, only antihypertensive drugs and lifestyle modifications). No history of aneurysms. My brothers have NO IDEA!

Bryan

Re: Living with Polycystic Kidney Disease

Postby Bryan » Tue Aug 21, 2018 5:19 am

Hello people, My name is Bryan , 27 yrs old and this is my story:
My father has been diagnosed a PKD 10 yrs ago... around 2 or 3 times per year the cyst was broken and he pee blood. He shared the same symptoms as you all ... and this month, August 2018, doctor said his kidney function was so low so he has to do dialysis... he started last week.

My father was living his life with this disease WITHOUT KNOWING IT IS GENETICALLY TRANSMITTED. He has a very flourishing life without angst and fear...

Unfortunately I couldn't resist to do my own research on it... and I recently knew that I might get it as well. Me and my little sister.
Now I have a real mess in my head... I have a lot of question that I couldn't answer... like
- should I go to the doctor for a check up and confirm if I have inherited it?? (even if I know i have it cause the probability is too high) or should I let it go as life going and live as my father did and only when the symptom appears to deal with it?
-should I stop thinking having a child? is it fair to have a child while knowing what's going to happen?
-Should I breakup with my GF and let her free from me cause she doesn't know it and she really want to have a kid later on?
-Should I tell to my father that he gave me that disease or not?

I am doing my Master degree know and planing for a phD next year... but I don't know what to do with my life anymore... please... I need some advice.
Thanks

Patrick

Re: Living with Polycystic Kidney Disease

Postby Patrick » Wed Sep 12, 2018 10:44 pm


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