Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hi everyone.
I am a (soon to be) 23 year old female who is very new to the world of polycystic kidney disease. I was diagnosed in December 2016 after a UTI brought me to the hospital. I was stunned and terrified when a doctor out of the blue asked me if I knew I had this disease. In all of my 21 years (at the time), I have never experienced kidney problems and now suddenly I was diagnosed with PKD, a disease I have never heard of before.
Everyday since the diagnosis I live in fear of what is next for my kidneys. My doctors are puzzled because they can’t find anyone in my family who had the disease which has led To no diagnosis of what type of PKD I have. Every jolt of pain in my back or abdomen triggers my anxiety.
I joined this group to gain insight on what to do with kidney pain. Does anyone have any tips for dealing with kidney pain other than taking a bunch of pain medication? I also never know what pain is bad enough to bring me to the hospital. Like I said, I’m a 23 year old college grad and constant trips to the hospital for kidney pain have taken a toll on my finances. I wish to gain some peace with this disease.
Thank you all for the support,
Meghan S.
Welcome to the group. I’m sorry to hear about your diagnosis, but hopefully can help you understand it a little better.
I was diagnosed at age 40, also with no family history. In this situation, the PKD is attributed to a mutation, which is the cause of around 10% of cases. I also panicked, but 11 years later my kidneys are still functioning, if not all that well. Try to stay calm. This disease does not tend to have a significant effect until somewhat later in life. You can look after your kidneys by following a few simple rules. Keep your sodium intake as low as possible, drink plenty of water, avoid caffeine, keep alcohol intake to a sensible level and do not take aspirin. Artificial oestrogens can cause liver cysts to develop so you would be well advised to avoid hormone contraception. You may also prefer to be cautious and avoid sports which may cause cyst ruptures such as some martial arts. If an activity doesn’t cause problems, it’s fine.
You can take Tylenol for pain, but try to avoid NSAIDs. The pain you experience may be caused by cyst ruptures, so try to identify what causes it eg heavy lifting, jarring activities so that you can avoid it happening. If you have pain, drink plenty and rest until it subsides. There is usually no need to visit the hospital. I’ve only been to hospital once in 11 years, but have had some episodes of severe pain. I tried stronger medication but hate the side effects so largely just sit it out now. I have learned to accept and deal with the pain. I don’t take any medication and have quite high levels of pain and dsicomfort these days. Mindfulness can be helpful, but avoiding triggers helps a lot.
Keep an eye on your blood presssure as if it goes too high more kidney damage can occur. If you have symptoms of a UTI visit your doctor for prompt treatment. Again, drink plenty of water. This may also help you to avoid UTIs.
Do you know your kidney function? It’s likely to still be good at your age and should continue to be good for many years to come.
Keep calm and I think things will start to improve for you once you understand that there is no need to panic. You can continue to live your life and by making healthy choices will be able to live a normal life. Type of PKD (1 or 2) can affect long term prognosis, with those with type 2 often never having serious problems, but it’s not essential to know and makes no difference to the approach you take now.
Take care, and let us know how things are going.
Chewitt
I am sorry to hear this diagnosis. I am 27 and have known my whole life that I have PKD and have watched MANY family members go through the PKD process. I believe people people total, including myself. Two of them are identical twins, so I can say, everyone’s journey is different based on you and your body. It sucks but honestly, I am here to pretty much just ditto what Chewitt said about kidney health. Drinking water/staying hydrated is the best thing you can do. Studies have shown when you are dyhrated, your body creates a protein that will stimulate cyst growth. If you want to go really intense, you can reduce/cut out animal proteins, drugs/booze, caffeine and sugars. I am ramble on about how doing that will help but also, I totally get that it is hard. I go back and forth depending how I am feeling.
Also, there is a new drug that will reduce the rate of cyst growth. I would highly recommend talking to your dr. About getting some. I have participated in studies and it reduced my rate of cyst growth over a three year period.
Unfortunately, you are going to have back pain. I try my hardest to not use pain medication so that when I need it, it will work. If you are using excessive acetaminophen (DON’T USE ibprofen unless a dr gives it to you and know you have PKD or if you really have to for a short term), talk to your dr. The pain killers will affect your liver in excess. Some people I have known used marijuana to help intense pain when in ESRF (end stage renial failure) but that was in their late 40s - we have an aggressive strand of PKD. But they were pretty much wake and baking the whole time. I am don’t use it. Honestly, I will just lay down for a little, breathe and it will subside on its own.
Exercise is also really good for any body. Just don’t do anything too rough. Popping a cyst was worse than child birth for me. I popped it in a mosh pit on my 16th birthday. Not the wisest decision on my part, but I got through it. If you ever ever ever ever ever have blood in your urin: do not pass go, do not collect $200, go straight to your doctor!!! They will make sure the bleeding stops, it doesn’t get infected, pain management, and get you back on your feet.
I don’t know what your plans are for having children/biological children. Not saying either way is the correct way to go about your life. If you aren’t interested, just skip this paragraph. If you use your genetic information to make a child, male or female, asuming that the other party does not have ADPKD, you have a 50% of passing it on to your children. If you both have ADPKD, the chances go up to 75%. I don’t believe you carry the ARPKD gene. But If you did, if your other partner has the ARPKD gene, the child will have ARPKD, which affects people from before birth. It is not as common as ADPKD by a LONG shot. So don’t look into it, unless you are really interested because I find it can be sad and not a good reflection of what your journey will be like. If you carry a child, assuming you a CIS female, you can go through pregnancy even while on dialysis. However, regular pregnancy without PKD does put a lot of strain on your kidneys. Just let your OBGYN know, and visit a nephrologist before/during/after. It does elevate your chances of preeclampsia by 11% compared to an average healthy female. But if it is something you want to pursue, go for it. Just fair warning, everyone is going to put their 2 cents in ALL THE TIME ABOUT EVERYTHING. Just keep yourself safe, have a medical team to go through your options, and do what is right for you!
So, really just treat your body right is how you will get the most miles out of your body. But also, don’t let it consume your life. You aren’t PKD. You are just a person that has it. It is more encouragement to treat your body better. Everyone falters in taking care of their body, so don’t beat yourself up. Just live your life.
Good luck!
Chels
Yes, I still have two hugely cystic kidneys and an enormous liver. My eGfr is 21 and my doctors are keen for me to move forwards with assessment for combined liver/kidney transplant, but I’m not quite ready for that yet. My plan is to be assessed and join the waiting list next year. I’m about to start EPO injections and have constant, severe digestive issues including pain, but most other things are not too bad. I’m hampered by the size of my abdomen, which is very uncomfortable and often painful, but have not really gained weight. This concerns the doctors because given my ever increasing size, it probably means that my underlying weight is dropping. It’s hard to eat more with these organs compressing my stomach and intestines. I don’t have significant fluid retention, probably because PKD involves a concentrating defect. I’m constantly in the bathroom and have difficulty remaining hydrated.
I have read your initial post, and the symptoms you describe sound like nephrotic syndrome. The main symptom is fluid retention and excessive leaking of protein from the blood, which appears in the urine. Have you had this checked? A blood test would show low levels of albumin. Nephrotic syndrome can also lead to raised cholesterol levels and high blood pressure. These will need to be treated. There might be a better diuretic for you, or you might need a higher dose. You can also help symptoms by keeping the amount of sodium in your diet low. Dialysis would remove this excess fluid.
You might find this interesting:
https://patient.info/health/glomerulonephritis-leaflet/nephrotic-syndrome
the only other symptom I have besides back pain is a life long stomach ache.
my sisters used to tease me about it when I was a little little girl. I have had
moderate to severe digestive issues for decades, as a matter of fact that is what led to the PKD diagnosis.
But I have not read anywhere about this being a primary symptom. Is that your experience?
Many Many thanks to everyone here for sharing their stories. It helps a lot!
I do have significant digestive issues, largely because my stomach, intestines and other organs are severely crushed by my enormous liver and kidneys. I find the weight of these beasts difficult to carry around all day and it makes sleeping a challenge. I’m never without pain or discomfort. I also have anaemia and have just started EPO injections. Do you have any treatment for your digestive problems?