Pain Relief for PKD Patients with Ruptured Cysts

@kzeiss, I'm so sorry to hear that your son continues to deal with unbearable pain. I know you said he has a high pain tolerance and he sure has tried many avenues both medical and complementary therapies as well as distraction. I'm tagging fellow PKD-ers like @caseyk @jolinda @stephanierp @nimalw @seantraci9 to see if they have some thoughts.

Kzeiss, has he had the cysts drained?

Sorry to say, he has not. His nephrologist wants him to discuss this with his urologist when he sees him on August 5. It is truly a dreadful disease.

p.s. I also think the medical community needs to differentiate bwt. pain meds for real pain and addiction. His GP will no longer prescribe pain meds to any of his patients as he feels alternative therapies are better. I don't think he has any idea what this kind of pain feels like and the toll it takes on someone. No wonder Boulder has become the ketamine capital of the US. Sorry, but I really feel the pendulum has swung too far and the people who really need the meds are the victims. We have to beg my son to take an oxy. He says he has to ration them because they will not refill them.

Hello,
I apologize for the delay in responding. I have been off-line for a while.
PKD is an awful disease, and I am so sorry your son has to deal with it. Each person's journey is so different, that it is sometimes isolating. I had daily pain. I found laying down helped (don't know why) and swimming kept my joints limber, when other activities were not possible. For me, keeping my body moving, was important because the body is meant to move and too much rest, has the opposite affect. I did not take pain meds other than Tylenol, and usually did not take that because it did little for pain management and the pain was so long term, I did not see the point.

I never had a cyst drained, so I cannot speak to that process. I do know that it is an option, and perhaps could offer temporary relief. I wonder also about a steroid shot epidural to help with pain management. When I was dealing with PKD, my nephrologist was my pain management advocate. I know nothing, of your son's doctor, nor his case, but if he is not being cared for in an acceptable way, perhaps it is time to seek out another primary nephrologist.
Do you mind me asking the approximate age of your son? Is he a child, or an adult?

I am sending Love and Light.

Thank you for your response. I will suggest he look into the epidural shot for pain. This is an option he did not know about. He must look for a new nephrologist as his nephrologist, who has been like a second mom to him, is retiring this year. His closest kidney transplant facility that accepts his insurance is CU in Denver so he will look there.
My son is 40 years old. I think he really needs to renew his hope for a life he can still live and enjoy. This is really a challenge as his grandfather and father died from PKD. His father died 3 years ago after two decades of suffering every possible PKD complication. My ex-husband was a brave soul but my son saw the tortured life he had led. His one uncle has had two transplants (luckily, the second transplant is working well), his other uncle had a transplant and also had an aneurysm operation last year. His one cousin obtained a transplant thru public advertising and is doing ok and another cousin is now advertising for a donor. So, emotionally, this is a particularly burdensome historical journey for him. I think he questions his desire to go thru what others in his family have gone through every day. The extreme pain complicates his mental health and decisions. The fact that he is also the youngest member of the family to have his disease progress this fast, this far also causes fear for him. As a mom, it is so hard to watch so much pain. I realize that I can't control his choices or mindset but perhaps only present opportunities. Since I am retired, I have the resource of time to explore options for him.
The input of this group means a lot to me. Thank you so much

The mindset is the hardest part when dealing with pain. And the fact that he has watched so many loved ones go through so much pain and death due to this disease is traumatic, for both him and you. I am sorry this has been part of your journey. I am the first in my family to have PKD-a spontaneous event. For me that has been a bit of a blessing, because I have not watched others suffer. However, it has also been a burden, because I refused to let my children see me suffer. I could not bear for them to have the scariness of this disease become part of their story. So I often hurt, without letting it show, which taught me there is truth and power in the adage, "Fake it til you make it." Smiling and acting like everything was fine externally, sometimes allowed me to accomplish things I never could have done if I had acted the way I felt. (Not in any way comparing my pain to your sons'. Every case of PKD is different, as is the level of pain experienced. The only commonality is none of us escapes the pain.)

Before I had my transplant, I had only one friend I knew, who had had a transplant. She died of cancer, a couple of years after her transplant, and I was terrified. What if I went through all of this and then died of complications within months of transplant? This started to become part of "my story" - you know those stories you tell yourself might be your future? Anyway, I shared my concerns with my nephrologists, and he said something I will share with you and your son: "Just because something CAN happen, doesn't mean it WILL happen." Just because others in your family have had tragic stories, does not mean you will have one.

It is really important to fill your mind with successful stories of transplant. To know that the average transplant center treats a kidney transplant like a tonsillectomy - not really but they are so common and so successful that they are very confident and incredibly successful. Five years ago, I was in kidney failure and was put on the donor list. The average life span for those on the list is five years. Five years later, I am now alive and healthy. I am not in pain. I walk and swim. I can teach dance again. I run a company. I hike. I spend my days loving on my family - much to my 17 year old son's chagrin:) Just because I could have died within 5 years, did not mean it had to happen. My doctors believe this kidney will last 20-30 years more. There is abundant life after transplant. BELIEVE. AND take care of your body in the mean time, so you give your body every opportunity to be successful - don't smoke, no alcohol, exercise in any way you can to stay as fit as possible(swimming always felt good on my body), eat healthy. Find the best transplant center with the best doctors and go there! HINT: I worked with two centers. One for my original transplant & removal of 1 PKD kidney; and Mayo for removal of my second PKD kidney 2 years later. Mayo is the best and Dr Prieto is the best PKD surgeon. Dr Prieto will remove both PKD kidneys at once with minimal invasiveness. But the main thing is staying focused on beating the odds. You CAN do this!

The best option for successful, long-term transplant is life donation. Go public. The people you think will come forward to donate, will not feel comfortable doing so. The people you would never expect to come forward, will come forward. Here is the letter I wrote when I went public. The site "Big Ask. Big Give" helped me create the content. I am sending great energy your way for a successful story of not just survival - but thriving.

My letter (not sure all the statistical data is current, as this was written 5 years ago):

Dear Friends and Family;
As some of you may know, I am in the process of being tested to be placed on a kidney transplant list. I tend not to talk about my health challenges very often, as it is not a happy topic and I don’t like to give negative things a lot of focus. I am also not comfortable asking for help. As it turns out, my kidneys show very little interest in where my personal boundaries begin or end. And so, I write.

Over time, my kidneys have created cysts, which have squeezed out my healthy kidney function, causing my kidneys not to work well enough to keep me alive on their own much longer. This is what I am facing, and my treatment options are limited to dialysis or a kidney transplant. 

Getting regular dialysis treatments, my doctor recommends 5-6 times a week, will help my kidneys do their job and keep me alive (the average life expectancy for a person on dialysis is 5 years). A transplant would offer me better health, more freedom, and the energy to continue to do what I love most: raising my children, ages 11-21 with David (my heart) and teaching dance (which is my oxygen). Living kidney transplants offer an average life expectancy of 12-20 years, as opposed to deceased transplants which average 8-12 years. With over 100,000 people on a waiting list for a deceased donor kidney, the wait will be 6 years or more, and sadly, time is not on my side.

Asking family members, friends and coworkers to consider donating a kidney is a difficult thing to do. However, my doctors have communicated that going public greatly improves my chances of finding a living donor match. I am an excellent candidate for a kidney transplant in that I am active, healthy, relatively young and the disease I have will not attack a new kidney.

You might not know a lot about living donation. The thought of surgery and living with one kidney can be a bit overwhelming. Here’s some basic information about kidney donation:
• You only need one kidney to live a long, healthy life. Here’s a short video of a donor’s journey https://youtu.be/3meff7iep5g
• Most donor surgery is done laparoscopically, meaning through tiny incisions.
• The recuperation period is relatively short.
• The cost of your evaluation and surgery will be covered by my insurance.
• You will have a separate team of healthcare professionals to evaluate you as a living donor. Their job is to help you understand the risks and benefits and look out for YOUR best interests.
• All of this can be done anonymously – not even I need to know your identity

If you are interested in determining if you might be a match for me, you may contact Kelly Coffey, Donor Coordinator, IU Health at (800)382-4602.
This process will be completely confidential. If you prefer to talk directly with me, please feel free to contact me. I realize that donating a kidney is not the right decision for everyone. If kidney donation is not right for you, you can still help by considering becoming an organ donor after death. If you have a group, Facebook friends, or organization you would be comfortable sharing this letter with, I would greatly appreciate your help. The more people who know, the greater chance for finding a match and the greater opportunity to educate people about the gift live kidney donation offers!

You can learn more about living donation on the National Kidney Foundation (NKF) at: http://www.kidney.org/livingdonation If you have any questions you may contact their confidential helpline at (855.653.2273). If you want to talk to someone who’s already donated a kidney, NKF can also help.

Thank you for your consideration,
Stephanie

Stephanie,
Your response was so inspiring and so helpful!
Our family is on quite a journey and you have made the road easier for us. Sharing your personal experience and your letter has offered us many insights we did not have before.
Our heartfelt Thank you so very much.

Cathy