I was in my early 20s when I first met my husband, Noah. We saw each other two nights in a row at different locations. The friends we were both with knew each other. The second night we saw each other, we were listening to a band and Noah said, “Can I buy you a drink?” I said, “No thanks, I had a kidney transplant.” Now that I look back, I could have been a little more subtle on sharing that information, but I’d rather be upfront. Noah’s beaming and full-of-life smile led me to giving him my number.
A few days later, he called me to see if I wanted to go on a date. He asked what I was up to and I said, “I’m in Washington, D.C. I am going to be speaking to the Congressional Kidney Caucus tomorrow morning with the PKD Foundation.” There was no hiding that I was not your “average girl.”
During the first couple of times I hung out with Noah, I asked, “How open-minded are you?” I proceeded to tell him about PKD and my other health issues. I wanted to make sure I was honest with him, that he knew my health challenges and what I was passionate about. I quickly learned how patient and accepting Noah is, as we have been inseparable ever since our first date.
For those of us with PKD, this can be a challenging topic, as most of us appear healthy on the outside. We don’t want to scare people away, but we have the desire and need to let them know this part of our lives. It is very important to be truthful and proud of who we are and everything that makes us unique and special. We deserve love and support and if our partner can’t provide this, then there is someone else out there who will. I am grateful that I shared this part of my life with Noah right away. PKD is not all of who we are, but it is important for our partners to understand and support this aspect of our lives. Noah has taught me so much about unconditional love. He is an amazing caregiver, supporter, cheerleader and husband. He gives me hope, strength and something to look forward to. I strive to be the best woman that I can be and make him proud.
We hear the saying, “Try and put yo
urself in their shoes.” I try and do that with Noah, but it’s hard. I often wonder what he thinks when he looks at me. I was recently sitting on our bedroom floor organizing my meds for the following day. I looked up at Noah, who was lying in bed, and said, “Did you ever think you were dating a sick girl?” He replied, “No, I was dating you.”
“There are darknesses in life and there are lights, and you are one of the lights, the light of all lights.” -Bram Stoker, Dracula
How did you tell your partner about PKD?
My boyfriend back at the time was in medical school. He persisted that I get an ultrasound. Once I found out the results of the ultrasound showing bilateral cysts, he left me. His family would not accept me either. Most people should be prepared for the negative consequences of this disease and finding a “Noah” is rare.
I totally disagree…I believe you happened to find an inconsiderate man who has no empathy and who would want one of those in the 1st place! NEXT! The good ones are out there, that’s all it takes. But it doesn’t have to be a negative at all, just a condition. If they love you and are worth having, it will work out. FAITH! God will help you find your soul mate! Hang in there! P.S. I have been living PKD for many years and had a transplant over 5 yr. ago! Be positive, and believe you are worth A MILLION!
Hi Nancy,
I completely agree with you and appreciate you sharing your positivity and advice with Natasha. Congratulations on 5 years! Here’s to many more!!!
i was once married then i got on dialysis my ex wife whom i loved left me . the problem with me is i cant forget her and sometimes i have dreams about her. i dont know but maybe my bad deeds so i guess i deserve this. its been three years not one day goes by i don remember her. i cant share my thought with my family or anyone its jst a slow painful suffering.
Dear Jitu. How are you doing ? I understand what you are going thru. It’s very hard to move on when our loved once go away from us Even though it’s very difficult we have to accept it.. some relations and soul comes in our life for certain period of time to perform their role. Even though your true love vibrations will pull her over to you…
Time is the best medicine. Everything will be fine. Everything is in gods hands whatever he does is best for us . now your health is most Important to take care of.
Take care of your self…
Hi Natasha,
I am so sorry that you had to deal with this on top of your diagnosis. I share Nancy’s sentiments 100%. I wholeheartedly believe there are other supportive partners out there just like Noah. I say this, because I have met couples like Noah and I throughout my journey. It makes my heart happy when I see a couple taking on life as a team and battling this disease together. I will hold on to hope that the same will happen for you. Good luck and try and keep a positive spirit though all of this. Wishing you the best!
I told my current boyfriend (and caregiver/support system/all around great guy) on our third date. I remember being so afraid of how he’d react–worried that he’d run for the hills. I was especially afraid to tell him because in a past relationship I had to experience going to the doctor, to the ER by myself (even though I was in a committed relationship) and I wasn’t sure I was ready for the rejection again. He took it totally in stride and his first reaction was to offer me a kidney, ha! He started doing his own research and even formed a team for our local PKD Walk.
He’s pretty incredible. He’s spent days with me in the ER when the pain was scarily bad. He was my ride and company when I had some cysts aspirated. I’m insanely lucky.
Hi Meredith,
Yay for amazing men! I am so happy to hear that you and your boyfriend are battling PKD as a team and that his first reaction was to offer you a kidney. Now that’s a keeper! 😉 Thank you for sharing your story. I wish the two of you all the best on your PKD journey.
I am a 20 year girl with CKD and this story has given me hope that I will not be alone. Hoping to find someone like “Noah.”
I hope you find your Noah too. I’m also in my twenties and have kind of given up on love and have accepted that I might be alone. Not many Noah out there in this day and age.
I was with my husband when he was told he had PKD after he fell sick at work and was in ICU for over a week. The news was devastating yet I knew I would need to be his rock. You can not chose the life that is handed to you, all you can do is fight it with your every being. After years of hemodialysis, peritoneal home dialysis and then his life saving transplant the battle was not over. He went through rejection which caused some scarring on the new kidney but doctors were able to save it.A year later one of his PKD kidneys began to bleed and caused him severe pain. The decision was made to remove that kidney which weighed close to 20 lbs. It has been 3 months since this surgery and so far…..he is feeling great!
Hi Deadra,
Wow, both of you are such fighters. I admire your strength. From a patient, thank you for being an amazing caregiver. It means the world to us fighting PKD. I am SO happy to hear that your husband is doing great! When people hear that I received a transplant, they often say, “So you’re good now.” People don’t understand the responsibility and work that comes with a transplant, however, we are so lucky to receive a miracle such as the gift of life. I wish you two the best. Thank you for sharing your journey.
This is hard but my husband has PKD out of 6 children 4 are gone. From side affects of PKD. Watching his siblings pass not being able to get the transplant in time. I am Thankful for the doctor that kept my husband off of dialysis til he was able to get his transplant. Now our son has PKD. I knew all of this before I married him we have been married for 17 years he is 4 years strong with his new kidney. I am Thankful for the love we have shared for those 17 years. I would have never known what love was if not for him. If something happens I will be able to say I know what love is.
Hi Donna,
So beautifully said. I am very sorry to hear the devastating impact PKD has had on your family. I share those same sentiments and say that if I have a short life, I am happy to say that I know the true meaning of unconditional love. Not everyone is so fortunate to say that. Thank you for being a wonderful caregiver and walking this path with your husband.
This is an amazing story – thank you for sharing!
My husband has PKD and I remember him telling me on the way to a nice dinner when we had been dating for only a few months. At first I panicked, but at that point, I knew this was my soul mate and that we could handle anything together.
It’s been 4 1/2 years of marriage and -2 PKD kidneys and +1 slightly used kidney from his amazing brother last April. And while we’ve tested “in sickness and health” a little early in our relationship, I wouldn’t have it any other way.
Hi Keely,
I am so happy you stuck by your husbands side and so beautifully display what “in sickness and in health” means. Wonderful to hear that your husband received a transplant and I hope that he is doing well. Thank you for sharing your story. Wishing you two all the best!
Valen,
You are such an inspiration to all who read your posts. Glad you found such a loving and caring guy. We all aren’t as lucky. I drew the short straw and am 4th generation who has both PKD & PLD. Actually, I should say had PLD, cause 9 years ago I received a liver transplant.
When I was in my 30’s and found out I had PKD I was married and had 3 kids. Before I got the news, my mother received a kidney transplant but sadly passed away months after the transplant. That was 30 years ago and I know things have changed a lot.
Long story, short version. my wife left me after I found out I had PKD & PLD. Not a very understanding person as she was a nurse! Everyone in my family who had this disease all passed away at age 59. So she wanted to start her life over without me.
Enough said, everyone isn’t as lucky as you.
Hi Jeff,
Wow, I am so sorry that your wife did not have the compassion to fight PKD with you. That clearly shows that you deserve better. There are many people just as lucky as I am. I say this, because since volunteering with the PKD Foundation in 2004, I have met many families, husbands and wives, that battle this disease together. I sure hope you can find an understanding woman who will join your team.
Right now, my mom is the oldest person to live in my family with PKD and she is 58. Everyone else passed away 53 and younger. I am so sorry to hear how PKD has affected your family. It is an ugly disease and that is why I share my story and do all I can to help the cause.
Thank you for your kind words. I wish you all the best!
My mom was doing well until age 65 in 2015 when she was diagnosed with lymphoma as a result of PKD/transplant, , it was slow growing until may of 2017..sadly, she’s passed on..
We had many years of happy memories, almost 15 years of her being a transplant patient..she was grateful for every day..
Sounds like my mom lived longer than the average PKD patient, if she hadn’t gotten lymphoma I wonder if she would kept her kidney for another 5 or 6 years?
Hi Rachel,
Thank you for sharing your PKD journey. I’m so sorry that you lost your mom due to lymphoma. Fifteen years post-transplant is amazing and I’m so glad that you were able to share that precious time with your mother and that she was grateful for every day. I hope your health is well. Hugs!
Your stories are an inspiration. PKD and PLD are difficult and it takes special people to be tough and kind and help us walk through the health issues. Hooray for you wonderful loved ones in our lives! Everyday is a blessing.
I have PLD, have been through a liver resection, & had every complication imaginable. By the Grace of God I pulled through. I still don’t have the strength to date. It’s so hard to go through the story time after time. Good to know there are people out there who understand!!
Hi Sherri,
I am sorry to hear all that you have battled, but it is obvious that you are a warrior with immense strength. I trust that you will find the strength to share your story again. I hope you will find someone to support you and join your team in fighting PKD.
Hi Ellen,
Thank you so much! Our disease sure is difficult and I am very grateful for all of the wonderful loved ones that support us. I share your same sentiments. Each new day is a gift. Thank you for sharing your positivity.
My girlfriend told me about her PKD after a few dates. I appreciated it and told her it didn’t change my mind that I wanted to keep seeing her. Then, I told her I have diabetes. Her reaction was the same as mine. We are still together and whatever the PKD holds for us I’m willing to face. From my viewpoint, it is good for the person with PKD to let their partner know (maybe not as soon and direct as Valen did with Noah). 😀 It is honest and realistic.
For those of you that had a person leave after learning about your PKD, I have to say you deserve better anyway! There are good folks out there that aren’t so shallow; it just might take you some time to find them. Oh, and wouldn’t it be ironic if the very people that left over your PKD find out they have a medical condition and are rejected by someone. 😉
Hi Andreas,
I am so happy to hear that you and your girlfriend have found each other. You both have a deep understanding for battling a health issue and will be great support to one another.
Thank you for sharing your positivity in regards to those that have had a person leave them after learning they have PKD. I appreciate you sharing your story and your optimistic spirit. I wish you and your girlfriend the best of health!
I love this story and wondered if you might willing to linkup at our invisible illness link party each Wednesday and/or share your story in our “Real life story” section.
We would love to hear from you.
Hi Tina,
Thank you very much. Feel free to send me more information about this to pkdwillnotbeatme@yahoo.com Thanks!
I totally agree with all the previous posts, your weekly blogs are wonderful….always so emotional, honest and inspiring . You cover every aspect of PKD and what patients and their families , have to deal/cope with and help us , by sharing your life. For that you need to be thanked greatly and know just what an amazing PKD warrior and advocate you are.
Hi Jan,
Thank you very much for this heartfelt comment full of support and love. Your friendship means the world to me!
I told my boyfriend before we even started dating. I wanted be honest from the beginning. He’s had some questions, most about the prognosis and risks to any children we may have in the future. He’s been supportive so far even though I’ve been very honest and even blunt with him. He knows I hurt most days and wishes he could do something to change that. But I am still a little nervous as it is a new (only 6 months!) and long distance relationship and he hasn’t seen a bad day yet.
Hi Danielle,
I commend you on being so honest. You deserve to be with a man who loves and supports you through the good days and the bad days. I wish you the best as you continue forward with this relationship. Be true to yourself and know that you deserve the best!
thank you for sharing. Were you in a crisis Shen you received your transplant? I found out I’m at early stage four PKD. I’m meeting with a new Bephrogist soon since my husband and I recently moved. Question is if in my my to have a donor when I’m not in crisis should I have the transmant or wait? I’m at 25-28% kidney function.
Info might have changed since my TX but 10% function or less was the point of transplant/ dialysis discussion. Your doctor will take good care of you. Medicare helps financially for transplant and 3 years of meds if you do dialysis. (Probably diff now). Your social worker will have all current info. Best of luck. It will all work out.
When I told my husband – we’ve been married for 17 years and together for nearly 30 – he was initially callous and stated “well, let’s just add that to the list”. He has been with me through malignant melanoma at 21, multiple ER trips for asthma, life-changing sripluitons to accommodate my multiple chemical sensitivity, one harrowing pregnancy and one uneventful one that gave us two wonderful kids, and now PKD. After we started talking to each other again 3 days later, he was honest and told me that he would love me forever and that I was the only person he’d ever voluntarily give his organs to, other than our children. He was honest and told me that sometimes it just gets to be a bit too much to bear and he had pictured things differently. He was honest and told me that he knows how difficult it must be for me and he feels badly for me, but that he needed me to understand how it affects him, too, and that he is only human. I understand. I love that he was honest with me. I love that he is scared, like I am. I love that he is angry and discouraged like I am. I love that he will give me the kidney I might one day need so that we can grow old together – either as husband and wife or as best friends for life.
Dear iMom,
I love that you shared your journey with all of us. Such a heartfelt story of what our lives are like and the emotions that PKD patients and our partners have. I am grateful that the two of you have stuck together and are enduring the good and bad days as husband and wife and best friends. So happy you have each other. It takes physical and mental strength to live with PKD and medical issues, you obviously have both. Take care!
Ellen,
Thank you for sharing your knowledge and positivity with Debbie.
Hi Debbie,
My kidneys were working 60%, but my cysts would not stop bleeding and they were forced to remove both of my kidneys and put me on dialysis. I was very ill and was on dialysis for about 8 months until I received a transplant. I hope that you are able to see your nephrologist soon, as they will know what the best route is for when you should get a transplant or begin dialysis. I wish you the best!
You are ALL blessings to me. Keep going Valen and Noah! Keep going fellow PKDers, warriors keep fighting and believe that the best is yet to come!
Love to you all.
Michele
Hi Michele,
Thank you so much for your support and sharing your beautiful spirit with all of us! Hugs!
You are a younger version of me, Valen! Very cool and original name, love it! I was diagnosed at age 32 with IgA and I’m now 39. Never been married. No kids. I’ve been in 3 relationships since my diagnosis and have found it very challenging to date with a chronic illness. I don’t know if it’s my age and that I am older…? I’ve found the men are caring, sweet, supportive at first, but it’s fleeting. My recent one smothered me and did too much for me where I felt more of an invalid. I love how openly blunt you were with Noah. I honestly am the same way. I’m on PD and share my story all the time, but also teach others at Patient Education Classes. I have gone as far as lifting up my shirt to show my catheter to ward off a guy that insists on buying me a drink. Seriously! I love Noah’s response when you asked him if he ever felt like he was dating a sick girl. I’m curious, did Noah ever or does he see a counselor to help him manage caring for you? Did you ever encourage him to do so?
Hi Carmen,
Thank you for sharing your story. I asked Noah your questions, and he said, “I never thought about it and never thought I needed it. The hardest part is feeling helpless. Wanting to do something to help and convincing and reminding yourself that all you can do is be there and be as strong as you can for the person.” Noah is extraordinary and we tackle life and my health issues as a team and make the best of every day. We have not come to a point where either of us have felt that counseling was needed, so I have not encouraged him to do that. You sound like quite a strong woman. Keep being you and I hope you find a partner to share your journey with. Wishing you all the best!
Hi Valen!
Thanks for asking Noah my questions and taking time to reply to my post. Wow, you certainly have one incredible guy! Noah, would you mind teaching classes to other men? Even spouses need your pointers! (From what I read from an online support groups, it breaks my heart…)
Thanks for the compliments, too!
Hi Carmen,
You’re welcome.
Noah is amazing! I am in awe by his love and dedication every day. I agree, I think he would be a wonderful teacher on this subject. He has incredible patience, with such a kind soul. Knowing that others have to walk their path alone, while battling severe medical issues, breaks my heart too.
Hello Valen,
What an amazing person of a husband you have! I was diagnosed in 2009 with IgA Nephropathy on my then-husband’s birthday, and now looking back, I think that he wasn’t able to fully accept it. Two years after I found out that he met someone online, and asked for a divorce. With my marriage breakdown my kidneys failed and I was put on emergency dialysis before I had peritoneal dialysis which I could do from home. At that time, too, my son was 4 yrs old. So I was on dialysis with a broken up marriage and a single mum at the same time. I remembered one time after a homeodialysis session at my hospital, my ex-husband picked me up and asked me to go with him to the city because there was apparently something missing that was needed to be filled out for the divorce papers. I was all sick and tired from my dialysis session that time. That was the moment where I said to myself that I can do this without him and that I am a strong person, especially without him by my side. I deserved better. Long story short, after a year, a few weeks before my birthday, I got the call that changed my life, a kidney was waiting for me! 7 years on, I am still here, a kidney transplantee, a single mum to a now 12 yr old boy and would you believe it – I work with kids, all day, everyday. People who know I had a transplant call me crazy as I work with children and because of the medications, I am immunosupressed. But I have never been sick, except for the usual coughs and colds, especially during the change of seasons. I am happy wih my life, although sometimes it would be nice to have someone to be with. It is hard to meet people who doesn’t judge you when you tell them that you have had a transplant. I wish people would know that it takes a strong person with a lot of courage and patience to be in our shoes. Maybe one day I will find someone who will accept me for who I am, for now life is awesome and I intend to fully live it!
Dear Ivy,
Wow, I felt like I went on a rollercoaster ride of emotions learning of your relationship with your husband and where you are today on your journey. I can’t fathom how hard all of this must have been, but what stands out to me is your strength and positivity through it all. You’re amazing and thank you for sharing your story with all of us. You are so right, instead of people being concerned about being with a transplant patient, I wish they knew what you said so perfectly, “that we are strong with a lot of courage and patience.” If they knew that, they’d know that they would be lucky to be with us. Stay strong and keep that beautiful confidence and I hope you find that special partner who will be lucky to share their life with you. Sending so much love you amazing woman you!
What about a dating website for dialysis patients to find companionship?
Hi Tina,
I can see how that would be nice to find others who truly get what we are enduring. I hope through blogs like this and social media platforms that you’re able to connect with others and form friendships.
Got married in 2021 and in2022 found out that my husband is PKD patient. He and his family never told us about that, they cheated. My husband and his elder brother both had PKD since 2009.
I am the guy dating the “sick” girl. I am 36y/o my girlfriend just turned 47. She is an ER nurse, I am an EMT. When I met her she was a floor nurse and her smile was infectious. Her auro was bright warm and inviting. I got up the courage to ask if I could buy her a drink maybe dinner and she informed me she was married and to a girl man was that a surprise but it didn’t deter me from wanting to be near her. There was something about her. Fast forward Halloween that year (mths later) I made candy corn jello shots and posted a pic she said she liked the look and thought they looked tasty. I offered to bring her and her wife some I showed up her wife introduced her self had a couple shots and off she went (training for a marathon) I left. Fast forward her and her wife went separate ways got a divorce and her daughter was going in for surgery. I met up with her at the Hospital bringing in a child to Children’s Hosp. (EMT) and that night we talked. She told me about her mom who died from a aneurysm due to undiagnosed PKD. She had 3 girls about in their teens Her GFR at the time was 30 that was 3 years ago. We’ve been together every since I couldn’t be shook her GFR is now 19 she is on the transplant list her daughters are 17,16,14 and my son is 12 and daughter is 9. We have a full house with 3 dogs and 3 puppies, 5 kids. And I choose her everyday.
I believe my girlfriend left me because she has PKD and it was getting very painful for her, she was having severe period pains and she was sick a lot, she would cancel plans because of the pain. I never saw her as a burden, I would do anything for her, I love her more than anything, and I just wish I could have her back, I don’t care if we don’t have children, I just want her, she completes me and I want to be there every step of the way in her life, she’s my one!