It was several years after my transplant as I sat in a lecture at Johns Hopkins University School of Medicine with a room full of med students. I looked up at the overhead projector and saw the MRI of my kidneys before they were removed. My nephrologist, Dr. Watnick, told her class that these were my kidneys. She went into detail of their massive size, the overwhelming amount of cysts I had and that they were functioning 60% when I had my bilateral nephrectomy.
Before I rose to speak to the students, as their guest lecturer, I scanned the room and observed the astonished reactions of the young med students as they listened to Dr. Watnick document my medical statistics. I thought how young they all were. That in the future they would be doctors to patients like myself. How they were healthy. Had their whole life ahead of them. I pondered on what I was battling when I was their age. How I had to drop out of college because of PKD.
It is hard to digest that my kidneys were working 60%, but needed to be removed to save my life. My main issue and the ultimate demise of my kidneys were cyst bleeds. I was in and out of the hospital during middle school and high school because of bleeds. I couldn’t play sports or be jolted around for fear of another rupture. I missed the first half of my senior year because of this.
There are two incidents in high school that stand out in my mind. I was fifteen and we were headed down to Myrtle Beach, South Carolina, for a family vacation. It was a long car ride and I started to get kidney pain. I tried not to think about it in hopes it would subside. I surely did not want to tell my parents and ruin our trip. Although all along, I knew I was experiencing a cyst bleed. By the time we got out of the car in Myrtle Beach, the pain was unbearable. I remember sitting in the hotel room not wanting to say anything. I finally had to give in. I told my parents. We went right to the hospital where I stayed for a few days. I was too sick to ride home in a car, so I had to be flown back to PA in a medical airplane. I felt awful and obviously ruined that vacation for everyone.
Since I couldn’t play sports, I thought I would try out for a school play. I landed the part of Mayor’s Wife in “Bye Bye Birdie.” During one scene, I had to pretend to faint. I did this on the night of the show, and the next day had a cyst bleed due to the light impact of the fall.
The start of my 11-month hospital stay when I was 18 and 19 began with a crippling painful cyst bleed that never stopped. I had over 70 blood transfusions to compensate for all that I had lost from bleeds. I remember peeing blood more than not. I would always remain hopeful. After I would pee, I would stand up and look in hopes to see a normal color. A glimmer of hope was all I wanted but it was never there. It was always red. They tried different procedures like cyst draining and nothing worked. They knew that if they did not remove my kidneys it would be the death of me. That’s the bloody truth!
As I tuned back in to the lecture, I was so happy those days were behind me. I was thankful that all of the students were eager to learn about PKD. They really enjoyed having me there to answer their questions and to share my story. When I lived in Pennsylvania, I was invited to take part in this lecture several years in a row. It was a miraculous and beautiful thing to return to the hospital that saved my life to share my first-hand knowledge with med students. It was an honor. An honor I would have never had if it weren’t for PKD.
Is it horrible to say I still look at the toilet after I pee….
I find it a habit. I also have what I call scar pain… I have random pain in the areas where I have scars Wichita is pretty much the majority of my stomach. Nothing bad just a twinge here an their. Dr Kraus said maybe nerve endings! Otherwise healthy an pain free an oh yeah no blood when I pee! It’s amazing how peeing excites those of us who haven’t peed for months at a time!
Hi Wendy,
No way, as I do the same. I look every time too!
I had the same twinge of pain across the majority of my stomach. That went away over time. Now the skin on the majority of my stomach does not feel normal. It is hard to explain. It does not hurt, but I don’t have the same sensation as when I touch other areas that have not been operated on.
Big hugs to you!
My mom has PKD (so does my uncle, and so did my PopPop), and she is having a double nephrectomy next week. I am in the unknowing state, awaiting to find out if I too possess this gene, Just found your blog, looking forward to your posts. HUGS
PS- I’m also from PA…
Hi Young Wifey,
I am wishing all the best to your Mom for her upcoming double nephrectomy. I hope this brings her relief and can move things in the right direction to helping her feel better and be healthier. So glad you found my blog and hope you enjoy it. Hugs back! Thinking positive thoughts for your Mom’s surgery. Aww, that is so awesome. What part of PA? I lived in South Central PA, in York…
I’m sad so many people deal with this disease, but it is always nice to know I am not alone. I have a very small build and my right kidney is trying to take over my whole abdomen and pelvis. I now have an umbilical hernia because of it also. I have 30% function so I hate the thought of removing it, but I don’t know how much longer before my other organs have no place to reside. I have a hard time eating already. How long did you have to be on dialysis before you had a transplant? It is such a big jump to say, “OK remove them”. I know I’m not ready yet, but It may not take a lot more to get there. I have another question for you. Did weather effect the your cysts? Did wind and storms cause you pain? I always say October is my off month because the change in weather is really hard on me. My nephrologist thinks I am crazy. I am in the market for a new one:)(nephrologist that is a kidney wouldn’t hurt either!)
Hi Vicki,
You are definitely not alone! I recall those days when it was impossible to take a deep breath because it would cause too much pain because my kidneys were so large. I was on dialysis for 7 months, until I received a transplant from a family friend. I don’t recall the weather having an impact on my cysts. Well here is to November almost being here and hopefully you will start to feel better. Where do you live? Maybe we can get some suggestions from others on good nephrologists in your area. Take good care!
I also experienced macroscopic hematuria (visible blood in the urine)several times in the previous years but antibiotic prophylaxis has somehow helped reduced the frequencies. It is not just the bleeding per se but seeing blood in the urine is not a pleasant experience. Hope I can communicate with you to ask about your experiences with transplant because I am yet to undergo it. I wonder how old were you when you had your transplant.
Hi Narciso,
So glad to hear that antibiotic prophylaxis has helped with your cyst bleeds. I agree, it is awful to see the blood and know what your body is going through. Would be happy to answer any questions you may have in regards to transplant. I was 19 years old when I had my transplant.
Vicki
I am in New England and have more pain in the fall then any other time and my doctor also doesn’t understand it. I am keeping him because he notes it every year and thinks it may actually be my lower back being pushed by my big old kidneys. Still have some function so consider myself lucky. My sister is on the transplant list already so I will watch and wait
Hi Mary,
Thank you for sharing your experiences with us and Vicki. That is interesting. I can see how the large kidneys could have an impact and cause back pain. Great that you still have some function. Hope that remains steady for a long time. Here’s hoping that your sister’s wait is short and that she will receive the gift of life very soon.
yes I have the disease so does my brother and his son I lost three Uncles from this my liver is so large feel like it going to brust any moment as for my kidneys very bad but I put it all in the Lord hands and I have a great life hope you the best
Hi Donald,
It is great to hear that with all that you are enduring and the impact this disease has had on your family, that you remain positive and can say you have a great life. That is wonderful! Keep that hopeful spirit.
Is it bad that it is nice to see people or comments and can relate. I was diagnosed with PKD when I was 16 and I am now 31. I have roughly 30% left and always nervous when time to pee. I pray every night that my 2 yr old daughter does not have the gene. Thank you for tour post as sometimes it is tough to be positive. Seeing success stories are
Hi Jason,
That is definitely not bad, that is what helps to get us through tough times, the support of others. When I was sick I didn’t know anyone else my age who had PKD and who could relate. That is why I share my story and started this blog. I too hope that your daughter does not have PKD and I hope that by the time she is our age, there will be a treatment and or cure. I also hope this blog will provide you with support and help you to remain positive as much as possible.
Uplifting and encouraging.
Thank you Jason! 🙂
Reading the posts brings me to tears. my grandaughter of the age of 8 with PKD. I understand fully what the future holds, this has been so very hard to accept. I would love to share that she is “beautiful”, so very smart,a wounderful sence of humor and a heart of gold. I could go on and on like any proud grandmother could. I have often thought were I could reach out for understanding and support, perhaps I now have. For each and everyone of you,may your own faith remain close to your heart.As for myself that is all I have. I’am so very thankful that I have now clicked on to these sites. Warmest Regards To All,
Hi Severa,
How lucky your granddaughter is to have such a loving and supportive grandmother! I hope this blog will provide the understanding and support you were looking for.
Thank you for sharing. You are touching so many lives and inspiring hope all over the U.S. and world. My brother died from polycystic kidneys when he was only a year or two old. I was only a year older so I wasn’t really aware of what was happening to him at the time. this was in the 1950s so not much was known about the disease at that time.
Jane – Myrtle Beach, SC
PS – If you want to come and visit MB, let me know.
Hi Jane,
Your words of encouragement and support inspire me greatly to continue writing. Wow, that is incredible. Do you have PKD as well? That is so ironic that you are from SC and mentioned about visiting. I would love love to! 🙂 I am not sure if it is too last minute, but there is a Walk for PKD in Charleston, SC on November 11th. My Aunt had PKD and passed away when I was 15. She lived in Charleston and I have never been there. I thought it would be wonderful to participate in the walk in her honor. Have you gone to a walk before? Would you be interested in going to the walk in Charleston? Please email me at pkdwillnotbeatme@yahoo.com 🙂
Valen, I live in Utah. The last 2 days I have been thinking of moving somewhere without the changing seasons! You are right, November is almost here! Thanks for being an inspiration to so many!
Vicki
Hi Vicki,
I don’t personally know of any nephrologists in Utah, but maybe someone else reading this blog will. Northern CA, where I live, is awesome and I have an amazing nephrologist I would refer you to! 🙂
My daughter is sicteen and a month ago we found out she has PKD. Her cysts started to hemorrhage She was admitted to hospital for two weeks and has re admitted twice since. Already three transfusions. Her kidneys are massive Over 15 cm each. The doctors in Columbus have never seen anything like it in such a young person with ADPKD. I am 47 on dialysis and hoping for a transplant and were to have both my kidneys removed on October 26 This has been cancelled because of my daughters kdneys condition is progressing at lighting speed. Her creatnine has cLimbed up to 3.4 As of Friday they are going to begin to get her listed or transplant ad considering dialysis and when o a nephroctomy. My other daughter 19 has the disease but not to this extent. It is all overwhelming. thank you for sharing your story Valen It gives me hope that she will lead normal life after a transplant. This disease is taking a horrible toll on my family. I am desperately seeking type O kidney for her.
Dear Lori,
Oh my gosh I am so sorry to read what all of you are going through. That is amazing how quick everything is progressing for your daughter, which reminds me so much of myself. Then to think of what you are going through yourself in addition to all of this. Is there anything that I can do to help? If you have not read my biography, I feel compelled to send a copy to you. If you are interested, please email me at pkdwillnotbeatme@yahoo.com with an address I can mail it to. Please keep in touch and let me know if there is anything that I can do. Sending lots of strength, positive thoughts and love your way!