As a little girl, I never dreamed of my fairy tale wedding, my ideal home with a white picket fence and beautiful children running happily around our perfectly manicured lawn. Was it because of my health struggles as I child that I knew I wouldn’t follow the so-called picture perfect life? Is it strange that I did not daydream or imagine a life of getting married, purchasing a home and having children?
The most common question I receive is, “Do you want to have children?” It is something Noah and I talk about quite often and very openly. At this point in life, I’m not ready to provide a “yes” or “no” answer.
I find it interesting how those around us observing our lives can sometimes provide greater insight into our inner thoughts and reasoning than we can ourselves. A few weeks ago Noah and I were discussing children and all of the volunteer work that I do for those suffering with PKD. He said, “I think all of the volunteer work that you do is filling the void of not having children.” At first this bold statement caught me off guard. However, a few seconds after hearing those three powerful words, ‘filling the void,’ my eyes welled up with tears. I instantly responded, “What do you mean?” Noah said, “When you have children, you teach them, love them, nurture them, and help them grow. That is what you are doing with the PKD community, through your volunteer work.” I nodded my head as I tried to digest this profound realization that my wonderful husband brought to my attention.
If I was completely healthy, do I think I would have kids? Absolutely! I love children. I wanted to be a kindergarten teacher. I always smile and love to look at pregnant bellies. I marvel at the thought of how we women can carry a beautiful little person inside us. I look at Noah’s baby pictures and how amazingly cute he was (and still is!) I like to imagine what our child would look like. Noah would be a wonderful father. Sometimes I wish so badly I could carry his child.
Then I snap back to reality and look at the big picture. My body has been through so much. I am very thankful for the relatively good health that I enjoy today and would not want to jeopardize my transplanted kidney by becoming pregnant. I have other health issues that could complicate the pregnancy. I am on so many medications and some are so new that doctors are not aware of what complications could be caused to a newborn baby. I fear the thought of something happening to the baby or myself, and then being on dialysis with a newborn. Thinking of Noah dealing with a wife on dialysis and a newborn is just not fair. I would not wish anyone to have to endure all of the health issues I have and I can’t imagine passing them on and watching our beautiful child battle through them. Then a huge factor that most do not calculate into the equation are the colds and flus the child would get and could pass along to me with my suppressed immune system. I am fortunate that Noah and I both share the same sentiments and concerns. We know that a surrogate and adoption is an option. We have not completely ruled out the idea but we know there is a lot to think about, and our concerns are valid.
It is hard not to compare ourselves to other people, but we were not all created to live the exact same lives. I was having a conversation with a wonderful couple at a recent event. The wife is beautiful and they have two precious daughters. To me, they look like a perfect family. The question arose about whether I have children and then, would I like to have them? My eyes moistened as I responded to the woman, saying, “I am sitting here looking at you and you are strikingly beautiful and you have two adorable, healthy girls. Some days I wish I could say the same, but I don’t think that is the path I am meant to be on.” I told her of my concerns and uncertainties of having children. She so kindly responded, “You are beautiful. I stay home and my job is to raise our two girls, to teach them and to love them. That is all that I do. You have touched countless lives and will continue to. Not everybody can say that. I will never be able to say that.”
That conversation was very insightful. It is interesting how each of us perceives each other’s lives. I looked upon this woman and thought that she was lucky for what she has, and she thought the same about me. Yes, it would be great to be able to become pregnant, but that might not be what is right for me; might not be the life I am supposed to live. I will continue to live each day positively and with purpose. I will not focus on what I don’t have but rather what I have. I will continue to fill this void with positive things and know that what happens in my life is exactly what is meant to be.
I would love to hear what stage you are at with PKD and your thoughts on having children.
It’s hard not being able to make the same choices as other women when it comes to having children. I hear about women talking blithely about whether or not they want to get pregnant this month or the next, and I have to swallow hard and smile. I have two beautiful kids myself, who had relatively uncomplicated births, and have been advised not to have another one, because of my PKD. It’s one of the hardest things in my life, but you’re right when you talk about how this decision doesn’t just affect you (or me). It affects our husbands, our potential children, other members of our family. The idea of being on dialysis with a newborn is pretty hard, and the idea of putting both my husband through that as well as my children is ultimately what keeps us from having another baby.
And, like you pointed out, there are tradeoffs with everything. Having a small family means that we can do things larger families can’t, like travel around the world, and give our kids opportunities that would be too expensive if we had a bigger family. And it’s much easier to live in gratitude than to wallow in what might have been.
Hi Heather,
It is nice to know that I am not alone in my thoughts and I can completely relate to your first two sentences. I am glad to hear that you have two kids and that you are looking at the positives of not having a third versus the negatives. I commend your positive outlook and love your last sentence that I feel compelled to repeat….’It’s much easier to live in gratitude than to wallow in what might have been.’ Beautifully said. Thank you for sharing your story and your wisdom.
I have ADPKD, and high blood pressure. I am 28 now, and I have a beautiful 3 year old daughter that I love more than life it’s self. I was a high risk pregnancy, but my pregnancy was picture perfect, my blood pressure was at it’s lowest levels ever, during my pregnancy. The doctor’s told me that I had a 2-3 year window to have another child without too much havoc on my body. I am at that mark now, I am ever so grateful for the life I have with my daughter. I would like another child, so badly.
I am concerned everyday for the disease that I could pass on, and the effect it would have on my child(ren). When I was 15, I came home from school and found my 39 year old (PKD) Mom dead, on the couch. I wouldn’t change the time I got with her, and I hold no resentment towards my Mom for passing PKD on to me. So long we love with all our might, only love will be in sight.
Ashley,
Wow, I am so sorry to hear of how young you were when your mother passed and so devastating to imagine that you found her dead on the couch when you came home from school. I am so so sorry! I am very thankful to hear that you have a beautiful daughter and that your pregnancy went so smoothly. I hope if you have another child that it goes just as well as the first. I share your same sentiments and have never and will never hold any resentment towards my mom for passing PKD on to me. I love your last sentence and want to re-type it as a positive reminder to us all…’So long we love with all our might, only love will be in sight.’ I am thankful that you shared your story and your strength for us all to learn from.
Thank you so much for your very insightful piece. I am a 35 year old, who has PKD. I am lucky and only have the early symptom of high blood pressure, but I know having a child could influence me greatly as I would have to go off of the current meds I am on, which are helping immensely. Not too mention how that year off of the medicine could enlarge the size of the cysts, etc.
Like you, I have always loved children. I did dream of having a huge family, but now I know I was meant to touch lives in another way. I have worked with children for many years now, and currently I work as a director of a child care facility. This gives me the opportunity to hold, care, and love children from 8 weeks to 5 years on a daily basis. I get to help many families and children get through their daily struggles.
When my brother had his child, I did think about adoption or maybe even if I wanted to risk it, but something inside me kept saying it wasn’t for me.
I still get pressure from a friend of mine that reminds me all the time that I would be an amazing mom, but she doesn’t understand. I know being a mom is not for me and with time, she will be able to accept that as well.
I have recently decided that I would become a mommy a different way and adopt a dog to fill that “void”. She is perfect!
Hi Heather,
It is so comforting to hear that I am not alone in my thoughts and concerns with having children. I admire your strength for standing up for what you believe, staying strong and confident in your decision and for following your heart. It also seems like you are ‘filling the void’ quite well through your work and outside of work with your dog. I feel content with knowing that the path of having children might not be my purpose and what I should be doing with my life and it seems as though you are content as well. Thank you for sharing your story and providing myself and others reassurance that we are not alone.
You are such an inspiration, I don’t have any other words right now!
Hi Lucy,
Those five words are very touching and mean so much. Thank you!!!
Hello, I am 34 years old & I was diagnosed with PKD two years ago. I don’t have any children & I’m still undecided. Truth is, I’m a bit concerned about becoming pregnant because I’m afraid of passing the disease to my child and/or wearing my body down thru the pregnancy. So far my nephrologist says it shouldn’t be a problem & to let him know when I’m ready to become pregnant so that he can switch my blood pressure pills. My beau & I discussed parenthood & he would live for me to have his child (once were married) but he doesn’t want me to potentially harm myself in the process. He’s against the surrogate process & he’s not too fond if adoption either. I, too, am not interested in surrogate pregnancy, but I am open to adoption. I’ve always wanted to feel a baby grow inside of me-now all I feel is nasty lumps causing pain/discomfort. I have some days w/o pain but when it’s bad, it’s BAD!!! I just take it one day @ a time & thank GOD that I’m still here. Even though I endure chronic pain I am thankful EVERYDAY that my kidneys continue to work normally & function the way GOD intended them to. PRAYING FOR A CURE!!!! #EndPKD
Hi K.M.,
Thank you for sharing you personal thoughts and feelings with all of us. I too always wanted to feel a baby grow inside of me. It makes me sad to know that all you are feeling is pain. I vividly remember those days before my kidneys were removed. Please know that you are not alone in regards to your concerns. As you can see from all of the comments here, we are all facing the same battle together. I hope this provides you with some comfort. Make sure to follow your heart and remember that you and your health are number one.
I’m lucky. Iam 62 and have not yet reached the stage of needing dialysis/transplant. My function is far from normal, but stable. Yet I too had to answer the children/no children question. Since my Dad died in 1959 without reaching 40, I have been aware of PKD and the possibility that I might inherit. It was confirmed when I was 36, at a time when my husband and I were ready to “do the baby thing.” While wrestling with the diagnosis, I realized that I couldn’t, wouldn’t risk bringing a child into the world with a 50/50 chance of inheriting this disease. One with no cure, and at the time, no treatment in view. I’ve had this hanging over my head since I was 8 years old – not for my child. I’m divorced now and face the knowledge that I am completely on my own, with no family at my back. But I do take comfort in knowing that, at least in my case, the PKD stops here. It stops with me. It helps me deal with the unknown. The PKD stops with me.
Deb,
I am so happy for you as it is quite impressive to say you are 62 and have not yet reached the stage of needing dialysis/transplant. Congratulations! I have really enjoyed reading all of the comments to this post and learning about all of the different point of views and lives that we have all lived. I am sorry to hear that your father passed away so young. It makes me sad to know that you are on your own, but thankful to hear and is evident of what a strong person you are that you take comfort knowing that in your case PKD stops with you. I commend you and look up to you for your strength. Thank you for sharing your powerful story of living with PKD. I wish you many more years without the need of dialysis or transplant. Take good care!
I am engaged about to be married. I have had PKD for about 10 years. This thought has crossed my mind several times and I have talked to my dad about it. Since it is a genetic disease, he is the one who passed it on to me. I asked it ever occurred to him not have kids. His reply “never.” This took me by such surprise since I have debated with the idea so many times.
“What?!” I asked my dad. “How did it never cross your mind”
He replied “I lived a full life, why would I want to deprive my children of that?”
This answer has shaped my opinion. I want to have children so badly. I felt more guilty knowing that there is a possibility they could have a disease.
But then I look at the progression medicine has made! My great grandparents died from it. My grandparents were able to be on dialysis. My dad was able to receive a transplant. Who know what this generation will hold.
I am hopeful and cannot wait for the joy my future children will bring to my life.
Dear Olivia,
Thank you for your beautiful family story filled with hope, joy and positivity of a bright future not only for your family but for all of ours. Thank you for this powerful and inspirational comment. I wish you and your family all the best!
My sweet friend, this spoke so deeply to both of our hearts. Sometimes what our life path are not as easy or as perfect as we wish they would be, but only we are made for our special our journey. I see the void, my dearest, and I walk it with you.
My Dear Amy,
I read your comment and instantly was overcome with emotion and my heart hurt and yet felt comforted all at the same time. I am so sad that we walk this path together but I am so thankful to have you by my side.
I was dx two years ago with PKD while trying to get pregnant.As I already have multiple health issues, I decide aganist getting pregnant. No one in my family has been dx with PKD but me.My husband and I decide adopting is our best option and are in the process of being matched with a child from our local foster care program.
Hi April,
Thank you for sharing. I am so excited for you and your husband that you are in the process of being matched with a child. I would love to hear more about this after you adopt a child. I wish you the best of luck and hope it brings you great joy!!!
My husband has PKD and we talked about other ways to have a child. Then I couldn’t, and we adopted thru the State for free. What a wonderful blessing it has been. My husband has been on dialysis for over 3 years now, we’ve adopted two children, and couldn’t be happier. We are also foster parents, and these children bring so much joy to our lives. I couldn’t imagine going thru this without them.
Do what’s right for you. You know what your body and mind can handle. 🙂
<3
Hi Andrea,
I’m smiling as I can feel your happiness through your words. Thank you for sharing your joy of how you found other ways to have children and how it has brought you great joy. Thank you for this sweet message and for sharing your happy family story with all of us. You set a great example of turning something positive out of something that could be perceived as negative.
I am the parent of a child with ADPKD. Before getting pregnant I had no knowledge of this diease which runs in the fathers family. It wasn’t until enlarged and then cystic kidneys were noticed on a routine prenatal utrasound that I was informed of the family history (this was a surprise pregnancy but one we were happy about). My son has been monitored by nephrologists since birth and was diagnosed with high blood pressure shortly after turning two yrs old, right after I found out I was pregnant with number two. It has been a tough road excepting his diagnosis and the reality that he will be on daily medication for the rest of his life and that he cant play certain sports. Some people didn’t aggree with us having more children now that we know about the disease but we had to do what we felt was best for our family.
Hi Jaky,
I am sorry to hear that your little boy is dealing with PKD so young. I wish the best of health for him and hope it progresses slowly. I appreciate you sharing your family story and how you have followed your heart, which is what we should all do in life.
I am 39 and was diagnosed with PKD at 17. Until recently.my health has been very good. Being a teacher I always knew I wanted to be a mom. When I married 6 years ago we had to make that decision on having children or not. We decided to give a go. Today we have a 4 and 2 yr old. Both of my pregnancies were monitored closely and everything we.t well. Both of my kids are healthy and currently showing no signs of PKD. I see how far we have come in the treatment of this terrible disease. My hope is that in my life time we will find a cure. Until then I will continue to be a part of the research studies so that if either of my children end up with PKD there will be better options for them than there currently are for me.
Hi Kelly,
I am glad to hear that your two pregnancies went well and you have a healthy family. It is encouraging to see how far we have come in the treatment of PKD and I share the same hope to see a cure found in my lifetime. I believe and hope with all my heart that when kids that are around the age of your children grow up that there will be better options than what we have had. Thank you for being a part of research studies and helping to make this a reality!
I like many with PKD got my diagnosis after my boys were born
So I didn’t have to make that decision. My boys are grown
Now and not yet tested so they may face this decision.
My thoughts- I have a wonderful full life with great kids,
A true Partner holding my hand and less pain than most.
My Dad is gone but his heart got him before his kidneys and he never
Complained about dialysis once. I can’t imagine
Never knowing him and have never once blamed him
For the inheritance. I only hope my children and maybe theirs feel the same
about me if they too take this journey before a cure is found.
Hi Mary,
Thank you for this beautiful, positive and inspiring comment. I am happy to hear that your families health with PKD has been fairly good and that your boys are grown and not facing any issues. Let’s hope that they are on the good side of that 50%. 🙂 I too have never once blamed my mom. I am thankful for my life and all of the wonderful experiences I have been afforded. Thank you for sharing your families history and giving all of us a hopeful perspective.
I am 57 and have stage 4 PKD. I have not had any problems, until recently , as my function slowly declines. I am currently moving toward a transplant this year sometime.my mother was on dialysis for 15 years, and I struggled whether or not to have a child. I decided to let it happen if it was meant to be, and was 30 when I had my son. Although I decided it was fine whether or not I had children, I am happy that I had my son. I can’t imagine life without him, and he discovered he had Pkd at 19 when he hurt his kidney snowboarding. My niece also has Pkd, but she lives her live pretty healthy. You have to what is right for yourself. I have 2 beautiful adopted Neisse that are loved as if they are our own too. Everyone has different crosses to bear in life, and PKD is part of who I am and it affects our entire family. But life is very special and it is a gift and we all must learn to make the best of what we are given. I am not defined by PKD , but I am a better person for it.
Kathy,
Wow! So beautifully said and I agree with your feelings 100%! Thank you for sharing your family story full of love and hope. I am excited to hear that you are moving toward a transplant this year. I wish you all the best and look forward to hearing when you receive your transplant and how great you feel. 🙂 What a miracle the gift of life is.
I decided to never had kids one the day I was diagnosed with ADPKD when I was 15 years old. The only think I knew about Polycystic Kidney Disease is that it is genetic and there was not a cure and that my grandpa had died from it in his early 50’s.
The reason that I didn’t know much about PKD because it came from my mother’s side of the family, but my father’s parents had custody of my since I was 6 months old. I was abused and neglected by my birth parents prior to that. Both retinas were detatched, I was malnurished, and was 40% behind developmentally. When I was 3 years old, my grandma saw me beating my doll named “Sally”. My grandma was very nurturing and loving, and taught me to love my babies. My grandparents had to give me lots of extra TLC, so that I was able to put myself through college and became a productive citizen and I have always chosen to maintain a positive attitude. (I don’t know how I didn’t drive them crazy, because I chewed on shotgun shells, started fires, and was hyper-active.)
As I grew up, people told me that abuse is a cycle and is passed on from generation to generation. So I was afraid that if I had children, that I would abuse them. I now know that I would never do that, but my background did make me an advocate for ADOPTION, because my grandparents took me. Otherwise I would’ve died.
Before I married my college sweatheart, we discussed adoption as an option. With our genetics, we could possibley have schitzophrenic twins with diabetes and Polycystic Kidney Disease. We never got around to adopting, because my husband’s been really sick for over 5 years with ESRD & diabetes and we would not be able to financially support a child and think it would be too stressful for them to watch a parent slowly die. I still push adoption, because everyone deserves to be loved like I was!
Hi Amy,
I am in awe by the challenges and struggles that you have faced and overcome. I am so proud of how you fought through them and so thankful that your grandparents provided you with the love that you needed. I am also impressed with how you followed your heart and knew what was best, not only for yourself but for those around you. I commend you for being so open and sharing the hardships that you have endured. You are such a fighter and strong woman. Thank you for sharing your brave story, which is one that we can all learn from.
Hi, I have been diagnosed with PKD since I was 16. At the time, I was diagnosed my family physician told me if you want to have children you have to do it before your 32nd birthday or there won’t be room in your body to carry a child. I am currently approaching my 40th birthday. I had a child when I was 24. He celebrated his 15th birthday in December. I had a difficult high risk pregnancy due to PKD. I had to have an emergency c section a month before my due date. My son was born early, but was very healthy. He remains healthy today. Of course, he has a 50% chance of developing PKD before his 30th birthday. I’m hoping he is one of the lucky ones. At lot of people thought I was wrong to bring a baby into this world knowing he could develop PKD. I believe technology is getting better everyday and I hope he will benefit from any knowledge we can gather. Growing up I always wanted 2 children, but after my son was born my physician encouraged me not to have any more children. He said another pregnancy would likely kill me. I could not abandon the son I already brought into this world, so I did the sensible thing and had my tubes tied. However, I still mourn the loss of the baby that could never be. When he was younger, a lot of people asked when I was going to have another child. They said your young with your whole life ahead of you, you should have more. I found myself explaining to total strangers that my PKD will not make it possible. I thought it was rude people you don’t know seems to think they have the right to ask you when your are going to have children and sometimes it hurt. However, it did give me the opportunity to educate on PKD. Today I’m functioning at 30% with a kidney transplant and possible dialysis looming in my future. I don’t regret having a child, but for me at that time in my life, it was right. I understand after a transplant and with everything you have to face it may not be right for you. I admire all you do for PKD. I believe it is important to discuss our disease openly and educate others as well as help each other. Whatever decision you make, will be right for you. It is great you have love and support from your family.
Hi Sonia,
Thank you for sharing your story with all of us. I am glad that despite the challenges of your first pregnancy that you have a healthy son. I’m hoping with you that he is on the good side of the 50% statistic. I also commend you for looking at the positive side of not having a second child and how it gave you the opportunity to spread awareness of the disease when people would ask you questions. As hard as I’m sure it was and is, I’m thankful that you listened to your doctor and did not have a second child so that you would not put yourself at risk and could be healthy to raise your first child. I share your positive thoughts on technology and the hope that future generations won’t have to endure the full effects of this disease. I am really pleased with all of the responses to this blog as I couldn’t agree more of how important it is that we discuss our disease openly and educate others as well as help each other learn. Thank you for your kinds words and helping us all learn by sharing your story of living with PKD.
Thank you for sharing such a beautifully written article.
I think the topic is highly personal, and at times thought to be highly controversial, but I think it’s so important to talk about for a number of reasons.
One thing that really resonates with me is how little awareness there is in the PKD community of different options regarding family planning. Granted if someone doesn’t find out they have PKD until after they’ve had children then it is not possible for them to make those same types of decisions, but for people who know they have PKD or at risk for it because a parent has it they have many choices. Most people understand that those options include taking a chance knowing that there is a 50/50 chance the gene will be passed on, choosing not to have children, or adoption. Some people are told that prenatal testing (and potentially choosing to terminate a pregnancy) are technically an option but study after study shows that people with PKD simply do not choose this route. Many don’t know that donor gametes, donor embryos, surrogacy or PGD (pre-implantation genetic diagnosis) are all potential options as well. These choices certainly are not right for everyone, but understanding that they exist, and what they mean are important so that each person/couple can make informed decisions on what is right for them.
Thank you for starting a conversation on a topic that so many people shy away from.
Hi J.P.
Thank you for your kind remarks and I agree about the sensitivity of this topic and how important it is that we talk about it. I really appreciate your support in me bringing up this topic. You make many valid points and I hope by starting this conversation that it will bring attention to the need to raise more awareness about family planning within the PKD community.
I wasn’t diagnosed with PKD until my early 30’s. I had my son at age 22 and then was blessed with a daughter at age 26. We never even thought about PKD since I hadn’t been diagnosed with it yet. I can’t imagine not having them in my life. Our daughter has PKD also. Our son does not. PKD came from my father’s side of the family. He never lived long enough to enjoy or even see any of his grandchildren. He died at the age of 46. I had my first transplant when I was 48 and have enjoyed 2 granddaughters and a step-grandson. I wouldn’t give those years up for anything. I am 64 and waiting for my 2nd transplant. The kidneys don’t last forever. A transplant is a treatment and not a cure. I’m praying for my daughter to get her transplant and for myself to have 15 more years with my grandchildren. My prayers to you for whatever you decide.
Hi Darla,
Thank you for being so honest and for sharing your story. I enjoyed reading and learning of your positive outlook despite how PKD has affected your family and how you are enjoying every day with your family and making the best of PKD. That is all we can do. 🙂 Thank you for your kind words of support! Wishing all the best to you and your family.
Hoping that these comments help all with PKD.
Hi Darla,
I believe everyone sharing their stories on this blog will provide great comfort and give us all examples to learn from. Thank you for sharing your story!
I am 40 years old and was diagnosed with PKD 6 years ago. At first I said I was never going to have children. However all my life I always wanted a child and could not see my life without one. I talked to both my nephrologist and a specialist OBGYN. When I decided to get pregnant I got pregnant in two weeks. I knew then that is was meant to be. I have been blessed with a beautiful boy. He is going to be 4 years old next week. I do not know if he has PKD but either way I would not change it for anything. At this stage he is perfectly healthy.
Three weeks ago I was also blessed again and had my kidney transplant. I do not know what the future holds none of us do but I do know that I am a very lucky woman with a wonderful supportive husband and a beautiful four year old boy.
Whatever you decide Valen to do I wish you all the luck and many blessings to you. Either way you have touched many lives and will continue for a very long time
Amy
Hi Amy,
My heart is filled with joy to learn that you have a healthy 4 year old, that you received the gift of life three weeks ago and that you have a wonderful supportive husband. Can’t ask for much more! 🙂 Everything unfolds in life for each of us just the way it was supposed to and I am so thankful that everything has unfolded so beautifully in your life. I hope you are feeling great from the transplant. Soak in every healthy day and all of that love you are surrounded with by your wonderful family. Thank you for your kind words of support and for sharing your uplifting story that will give us all hope.
I am 37 years old and I was diagnosed with PKD 12 years ago. I find this post and the accompanying comments to be very therapeutic. When I was diagnosed my husband and I decided not to have children because we did not want to risk passing this disease on. I always thought that I would be a mother because I love children. As an elementary school principal I am surrounded by children and their families everyday which is very difficult for me because it is a constant reminder of our void. I am having a very hard time accepting the fact that we will not have children. I feel so sad whenever I think about it. Thank to to everyone for sharing your stories because it helps me feel like I am not alone.
Hi Ali,
Thank you for sharing your feelings. This is a very hard thing to digest and to accept. I can completely relate and understand your sadness. With your profession, I can see how that constant reminder every day would be difficult. I hope over time being surrounded by kids may help you versus hurt you. It made my heart happy to hear that this post and everyone sharing their stories is therapeutic for you. I am sorry to hear of the pain that you are going through. I wish all of us did not have to face this, but we must remain strong and face it together. Sending lots of strength and love to you.
I am sitting here with tears coming down
my face after reading your article on children. You are so
special and I am so grateful you came into my life and
taught me so much. I treasure you with
all my love.
Sandee
Hi Sandee,
I will treasure these words always and always. You hold a special place in my heart. Thank you for your continued support and friendship. Love you!
I don’t know if the choices I made along the way (I knew I had PKD father side from around age 18 at least)…Anyway, I did have wanderlust and knew ‘I had to travel’ …but I wonder if my whole way of looking at life was affected by PKD in my 20’s?). I do feel I got the ‘don’t have kids vibe from my parents in a ‘subliminal way’. (And I know they meant it from this PKD concern of course). I walked the path of independent, traveller, non materialistic and just never had the ‘house filled with kids dream’. I love kids, and think being the cool aunt who baby sits for three days is great and fills my ‘motherly needs’. I ended up getting married in 2009 to an amazing man who is 38 and didnt want children (what are the chances?) I fell in ‘that kind of forever love’ . I was sincerely shocked when he said he didnt think having childre was right for him. He was worried about how I would feel …little did he know how relieved I felt only because by then I had made up my mind ‘it was not my path’. When we shared this conversation, he did not know about PKD or anything I don’t have any regrets now (I’ve hit 40) and feel I chose the right path for me (travelling life) but I will never really know how much of it was PKD related if you know what I mean. I am in stage 3 now and will be seeing Dr Terry Watnick for my first time in March 2013. I love how you open up about this topic. I always thought it was ‘my own personal journey’ but all your thoughts clearly tell me ‘we are not alone’. I can also say that knowing I had PKD made me want to do a lot more things I may have put off. For sure I always felt ‘my time might be more limited’ and at the same time I’d say ‘Oh but I’ll be different and beat the statistics’ (Well, we can try the positive thinking route!) Thanks to everyone who shared. 🙂 I do have to control negative thoughts about my future or the thoughts control you. ***I do not know much about transplants as in I was surprised with the comment 2nd transplant*** I have mostly been ‘nutrition’ focused (no salt, no red meat and have no idea how that plays out in the end except to know it helps my health ‘in general’)
Hi Adriana,
I really enjoyed reading your comment. I love to travel and feel like a free spirit myself. I am thankful that my husband is not one that absolutely wants kids and that we share the same sentiments. Reading your story really proves that everything happens for a reason and happens at the right time. 🙂 When I lived in PA and spent a long time at Johns Hopkins, Dr. Terry Watnick was my nephrologist. She is AMAZING! Please tell her hello and give her a big hug for me. Thank you for helping to make this blog so special by sharing a piece of you with all of us. Just by reading your comment I could feel your positive energy. Thanks so much for sharing! If you have any transplant questions, please feel free to ask as I am 10.5 years post transplant. 🙂
Hi, I have read your article and found it very moving, as with all of the other potential parents with PKD both I and my partner went through the whole experience a good few years ago. Being a man and with PKD I also wanted children, but after a lot of sole searching and thinking about how I (we) would feel about passing on the desease so we opted for sperm donation, resulting in two lovely children who will be free of the desease and will be free of the experiences and issues I have had. We all want to be normal we all want families, but just to say that look at all options before giving up.
Hi Anon,
Thank you very much for sharing your personal story and giving all of us a different view point and the different options that are out there. Makes me smile knowing that you have two lovely children. Thank you for opening up and allowing us all to learn from you.
This post breaks my heart, but as so many others have said, thank you for letting us know we are not alone. I am 41 with ADPKD diagnosed at 4 months of age, so I have known of my condition since I was a child and long ago decided that the PKD in my family tree would also end with me. My husband knew this and is supportive, but it has been hard for me to accept in recent years. Here is what I learned this year, too late for me: if you’re willing to go through IVF and use the medical technology available only in the last few years, it is possible to develop a specific genetic test to test your embryos for the genetic mutation that causes your personal brand of PKD, and you can have only those embryos implanted that do not carry the mutation. If you are under 40 years of age and have health insurance, some of the costs of this are covered by insurance, depending on what state you live in. I hope this information helps someone else. Best wishes for happiness and health to all.
Hi Claire,
Thank you for your kind words and helping to make this post so special by sharing your words of wisdom. As I get older, I too feel like it is getting harder for me to accept. This post has helped me to know that I am not alone. Thank you very much! I too send best wishes to you for happiness and health!
I read your blog many, many times over many, many days. I love your view of life and I connected so deeply with Noah’s words, “I think all of the volunteer work that you do is filling the void of not having children.” While I was blessed with two amazing kids I have an empty nest now. Marissa is off and happily married and Scott is in heaven. To deal with the emptiness of losing a teenager (who was a hero to 6 through organ donation) I fill my days and hours with volunteering to get the message of organ and tissue donation out! It is filling a void in my life-when I am in my low spots of grief I can remember all the people who have received or need organs and tissues and it motivates me to go tell the world to “Check YES”.
Thanks for sharing your thoughts with the world Valen! You never know who you will touch. D
Hi Deanna,
I can’t thank you enough for this beautiful message that has touched my heart. I admire you, your strength and dedication so much. I am grateful that you are not only able to volunteer to help fill that void, but now you have a career to help with that as well. Thank you for having the courage to look at the positive light through such a devastating part of your life. Thank you for helping others have a second chance at life like I have been so lucky to have been given. I am thankful that our paths have crossed and greatly appreciate your kind words of support. Through this recent hiccup I have realized even more how important it is to fill any void we have in our life with something positive. It is very therapeutic. With this recent challenge in my life and the down time that I am forced to have in order to heal, I am trying to stay mentally strong and continuing to do my volunteer work to bring joy to my days. I know Scott is smiling down on you and so proud of you and the difference that you are making. Thank you for all that you do. Sending big hugs your way! xoxo
I struggle with this every day. I’m the same in that I love children and would love to be a mother. But I don’t know if I would feel right having children knowing I could pass ADPKD on to them.
I think I compensate by taking care of people through the work that I do. I am a natural caregiver and because I have chosen not to have children, I tend to treat everyone I come across as someone I can care for.
It’s a battle, because I look at my mother, who also had the disease and was such a strong woman that I never knew how much she suffered. There’s part of me that thinks I can somehow be that kind of a mother, too. But again, the thought of subjecting my offspring to this crummy disease makes me cautious.
I have friends who mention that science could have a cure by the time my children would be facing their own struggles with the disease, but would I really want to put them in such a position? I just don’t know.
Hi Meredith,
Thank you for sharing your thoughts. I share your same sentiments of concern and going back and forth with the idea of children. This is such a difficult and personal decision. I think the best is for all of us to follow our gut feeling and what our heart tells us to do.
I was diagnosed at age 12. I had my daughter who is now four when I was nineteen. I was told last year that I will probably need a transplant by the time I am 30 and to have more kids soon if I wanted more. I’m now almost 6 months pregnant with my second little girl. The only problems I have are high blood pressure and frequent uti’s but we are hoping to have a healthy rest of the pregnancy! I feel lucky that I’ve had the opportunity to have children despite my high risk status and the difficulties I sometimes face. But PKD will not beat me 🙂
Hi Melissa,
I smile knowing that you have had the opportunity to have a daughter and that you are pregnant again and overall doing well. I hope the next few months will remain uneventful for you. Please let us know when your second healthy little girl is born. I also smile to read you saying ‘PKD will not beat me!’ Makes me happy to hear you say that. Wishing you the best with the remainder of your pregnancy and for a smooth and healthy delivery. PS I had uti’s all the time after my transplant and I take cranberry supplements every day and have not had one since I started taking them. (knock on wood) 😉
Hi Valen,
I’ve shared my “child” story with you before, but reading your post made me just have to respond. My heart aches for the dreams that can’t be fulfilled, but know that you are touching SO many lives and helping inspire so many people… and helping to pave the way for a time when we won’t have to worry so much about passing PKD on to the next generation because there will be at treatment. I do hope that you will find special children in your life who will help to fill that void. There are so many children in need of love, caring, and assistance that perhaps one day you will find one thrust in to your life in some way when you and he/she most need it.
At 43, I am enjoying good health and stable kidney function, and celebrate my 11 and 8 year old daughters daily. My first pregnancy was rough, with hypertension, bedrest, and and emergency c-section and kicked my creatinine up .4 points. We thought long and hard about the 2nd, chanced it, and it was smooth sailing, lowered my bp back to normal, and knocked my creatinine down .2 points! Though we both had considered having a 3rd, we did not want to take any more chances with my health and enjoy our many nieces instead of more of our own.
Had I met you before I had my girls, I might have given pause… but since all of us with PKD in my family have led happy and productive lives and have been content with them even through dialysis and transplant, we honestly never considered not having children. EVERYONE has the potential to pass something horrible on to their children. I just happen to know what one of them might be. But, with taking the chance, I have also committed to helping get us to a treatment or cure. I’m enrolled in a clinical trial, I fundraise, I educate, and I advocate. I can’t sit back and hope someone else will do it.
I am grateful that raising daughters is part of my life story… but with them I did give up the freedom and adventurous spirit I used to enjoy. And when I read about your adventures, I miss it! I too feel a longing. I don’t think anyone can have everything they want or think they want… so as many said in earlier responses, we have to celebrate what we have, where we are, the decisions we’ve made, the hand we’ve been dealt, and make the most of all of it.
Hi Sweet Heidi,
I have read your response several times and am so thankful that you have shared your thoughts with all of us. It is so beautifully written. I love hearing your positive take on PKD and your family. I have really enjoyed reading everyone’s responses as I could relate to all of them and see how different and unique all of our lives are and appreciate and respect everyone’s opinions and decisions that they made. This has been my favorite blog post to date as I am so happy to see all of the people that have spoken out about their personal stories. Your kind words of support and love means so very much to me and really touched my heart. Thank you for your support and your friendship. I hope our paths cross again and I can give you a big hug! Thank you for all that you do to help all of us who have PKD and the future generations as well. I’m so glad that you shared your story and your wisdom with all of us. xoxo
I am so glad to have found this blog and am so envious of those who have this resource as they struggle with what was the hardest aspect of the disease for me so far. I was diagnosed 14 years ago at age 29 when I was newly married and just starting to think about having children. I inherited from my father-parents were divorced when I was 2-and didn’t have much contact with him. I think this was a major issue with how I have handled the diagnosis. Having a close positive relationship with the parent with PKD probably helps you adjust to the idea of living a full happy life and being there to support your children if they too have PKD. I also don’t have a lot of info on how the disease progressed with him, only that he had 2 transplants and died at age 52 (not great news). So it was a tough decision about whether to have kids or not. I contacted the PKD foundation and local support group but found that every member at the time was decades older than me and had already had children (most before they even knew they had PKD in the family). They were talking about transplants and dialysis while I was just trying to wrap my head around the diagnosis and if I was ever going to have a family. So, it was a much different time with not the great support and sharing that there is now only 14 years later! Long story short, we finally decided to try and then had infertility issues. I took this as a “sign” and we went on to adopt 2 beautiful children-twins-a boy and a girl. It was the right decision for us and we are so happy with our family. I am glad that PKD “ends with me” but it is bittersweet because there is still a sadness that PKD took that other path away from me. Anyway, thank you so much for sharing your story. It is so nice to know that I am not alone as my story continues and I face each new chapter that is life with PKD.
Hi Kim,
Your first sentence touched me greatly because one of the main reasons I wanted to do this blog is to provide comfort and a place for people to go who are dealing with PKD, because I wish I would have had that when I was diagnosed at the age of 10. So thank you for saying those kind words. I am so sorry to hear that you did not have the support of your father who you inherited PKD from. That is one thing that I have also struggled with which is always being the youngest. I was diagnosed at 10 and didn’t know anyone my age with the disease and then at 18 I was the youngest in the dialysis center, so I never had anyone around me that I could connect with. I still sometimes feel that way to this day. Aww, I am so happy to hear that you have twins and a happy family. I can definitely sympathize with you in regards to your sadness that PKD took that other path away from you. I am very sorry that you have to deal with that. I struggle with it as well. You are definitely not alone and I am so glad that you found my blog and hope you will continue to enjoy it! I would love to see a picture of your twins and family. I am on facebook under Valen Cover Keefer if you would like to friend me. Take care!
First, I just want to say I am so glad this blog is here! It has been a blessing to read the stories of those also undergoing the challenges of PKD. I am 21, newly diagnosed, and still trying to wrap my head around the diagnosis and what it means for continuing my education, what is going to happen over the next few years, and what it means in terms of my ability to bear children. It has been a difficult past few months of prioritizing, and having everything put into such harsh perspective. I am from a long line of ladies with PKD. My mom had her transplant 6 years ago, and the disease also affected my grandmother and her mother. I don’t feel that I wouldn’t have children for fear of passing it on. (I have PKD, but I’m sure happy my mom had me!) However, I don’t know if it will be a physical possibility for me if I wait more than a few years (who has to think about these things at 21?!) This news was heartbreaking. I’m just doing my best to stay positive and know that everything will become clear in time. 🙂
First, I just want to say I am so glad this blog is here! It has been a blessing to read the stories of those also undergoing the challenges of PKD. I am 21, very recently diagnosed, and still trying to wrap my head around the diagnosis and what it means for continuing my education, what is going to happen over the next few years, and what it means in terms of my ability to bear children. It has been a difficult past few months of prioritizing, and having everything put into such harsh perspective. I am from a long line of ladies with PKD. My mom had her transplant 6 years ago, and the disease also affected my grandmother and her mother. I don’t feel that I wouldn’t have children for fear of passing it on. (I have PKD, but I’m sure happy my mom had me!) However, I don’t know if it will be a physical possibility for me if I wait more than a few years (who has to think about these things at 21?!) This news was heartbreaking. I’m just doing my best to stay positive and know that everything will become clear in time. 🙂
Hi Mary,
I can personally relate of being so young and having to think about things that you never imagined. You are definitely not alone and I think you are handling everything so great with such strength and grace and doing the best you can to stay positive. I have learned that all we can do is focus on today and make the best decisions based on the information that we have today. When I start worrying and thinking too much about the future and the what ifs, then my thoughts become clouded and in turn am not making the best of the day. Enjoy every healthy day and trust that everything will unfold and happen as it should. Makes me happy to hear that you are so glad that this blog is here! Thank you so much! 🙂
Hi Valen- I just read this post today and I have to say that it is a topic that still hits home some days at 36. It is amazing how few people I have around me that truly understand and reading this made and the comments made me tear realizing that I am not alone. I was not as ill as you were as a child, but I was diagnosed as a teen, had already lost my grandmother and would lose my biological father when he was 45. My mother told me as an adult that it would be a selfish move, one that would jeopardize my health and then pass this on to the children. My brother (who had a transplant) has 3 children, but it is a different decision for him. I have had high blood pressure since 19 and now my kidneys are enlarged and painful and I cannot imagine carrying a kid, more less lifting one and caring for him or her every day. It’s sad when you are at this age and see everyone else, but I agree that you have to be grateful for your health and believe that you are on a different path, one that will be fulfilling and rewarding in other ways. I am so grateful for you sharing this and for all of other women who have shared their thoughts and stories on this very personal decision. In the midst of all of my young mom friends, it is comforting to know that I am not alone. Take care.
Hi Jennifer,
Thank you for sharing your thoughts, because you have in turn inspired me. As I read your words I could feel for you and have such compassion as I feel the same exact way. We are at the age where we are surrounded by others our age that are doing the family thing. I feel like I am totally different than them and just can’t connect because they can’t fully understand. They can try and understand but not fully appreciate the difficulty of it unless if you walk in the same shoes. I am happy to hear that this post has helped you to not feel so alone. All of the comments really helped me too. We are in this battle together and I will continue to trust that we are on a different path for a reason and that it will be fulfilling and rewarding in other ways. Sending a big hug your way. Take good care and thank you for sharing your personal feelings.
我是中国人，也是ADPKD。我31岁了，目前身体一切正常。我结婚了，正在考虑是否要孩子的问题。但是，如果没有办法有一个健康的孩子的话，我丈夫的父母希望我们离婚，别惊讶，这是中国的传统家庭观念。我很痛苦，也很矛盾。有时候因为担心觉得不该要孩子，有时候觉得医学的发展，这个病会被治愈，为什么不要孩子呢？我还在纠结中。看了这个博客，带给我很大的勇气和力量。我想要孩子，不管他是否被遗传。
Hi Jie,
Wow! Thank you so much for this amazing message. I am somewhat speechless. It is an honor to receive a message from you and for you being so open about your culture, which I never knew. I am so sad and my heart hurts for the position that you are put in. So how will you and your husband make the decision of whether to have a child or not as there is a 50% chance of passing PKD on? It makes me happy to hear that this blog has helped to give you strength. Stay strong in what you believe in. Follow your heart and follow your dreams. Please keep in touch and let me know how you are doing. I wish you all the best!
Translation of Jie’s message:
I am Chinese, but also of ADPKD. I am 31 years old, the current body everything is normal. I got married, and is considering the question of whether to have children. However, if there is no way to have a healthy child, my husband’s parents want us to divorce, do not be surprised, this is a traditional Chinese family values. I was very painful, very contradictory. Sometimes because of concerns that should not to have children, sometimes feel that the development of medicine, the disease will be cured, why not to have children.? I’m still tangled in. Read this blog, and gives me a lot of courage and strength. I want children, regardless of whether he is genetic.
I’m very glad to see your reply.I have told my husband what I thought.I hope that he could support me.Before I found your blog，I did a gene detection.（Waiting for the result.）I hope PGD（preimplantation genetic diagnosis）could help me to have a heathy child.But it’s not very important now.Thank you for sharing your story.I love your smiling face，so beautiful，so warm.Keep in touch and wish you happy.
By the way，perfect translation.
Hi Jie,
My mom was very intrigued by your comment and she wonders where you live. Thankful to hear that you had a gene detection done and hope that will keep your marriage strong and you able to have a family. Please let me know what the results are. Thank you so much for your very sweet and kind words of encouragement. I have to give Sara at the PKD Foundation the credit for the translation! 🙂
Hi，valen，
Thank you for your reply.Without seeing you，I already consider you as a friend.I live in Chengdu，in southwest of China，a city of long history.
Oh，my poor Eglish! I have a lot of words to say,but I couldn’t express.I need to learn English harder.
Hi Jie,
Wow, so amazing and special to have a friend in China! I live in Northern CA in the United States. Could you write them in Chinese like you did in the first post and then I could have the PKD Foundation help me to translate them again?
好的，我还是用中文。
在我十岁的时候，父亲因为脑淤血去世了。一年后，奶奶因为肾衰竭去世了。那时候，我们才知道我们家族有PKD遗传。我们都去做了体检，结果发现：爸爸的三个姐妹中，有一个是PKD（她50岁了，肾功能还是正常的）；作为爸爸唯一的女儿，我被遗传了PKD。
每次体检问医生，有没有什么治疗办法，或者有没有什么药物可以抑制囊肿的增大，医生都说没有办法，只有定期体检，合理饮食。每次听到这样的回答，我都很难受。难道PKD患者们只能等着这个病一天天严重，一天天吞噬我们的生命？为什么没有积极的治疗手段呢？要知道，在中国想要做肾移植并不容易，肾源少，费用高，医疗水平有限。目前，我的肾功能正常，也没有高血压等症状，但真的等出现症状后，又有什么好的办法来治疗呢？
我不害怕面对PKD，不害怕离婚，但是，作为家中独女，我时常担心万一我先离开这个世界，妈妈怎么办？很长一段时间里，我感到痛苦绝望。我疯狂的在Internet上查找关于PKD的治疗进展，中国的，外国的，就是这样发现了PKD will not beat me.这对我来说意义重大。知道吗？我有了一个想法，我想像你一样，在Internet上分享自己的事情，让中国的PKD患者有一个可以互相交流、分享信息的平台，鼓励PKD患者勇敢面对疾病。
By the way，如果有机会，欢迎你来中国旅行。
Hi Jie,
I used an online translator website and this is what it gave me for your recent comment:
”
Well, I was a Chinese.
At the time I was ten years old, his father died a brain clot. A year later, Grandma died because of kidney failure. At that time, we know we have PKD genetic family. We are going to do a medical examination revealed: father’s three sisters, is a PKD (she is 50 years old, renal function was normal), as the father’s only daughter, I inherit PKD.
Each time the examination asked the doctor, is there a cure, or is there a drug can inhibit the cyst grows, doctors say there is no way, only regular physical examinations, diet. Every time I hear the answer, I am very uncomfortable. PKD patients who can only wait for the serious day by day, devouring our lives day by day? Why there is no active treatment? You know, wants to do a kidney transplant in China is not easy, less kidney, high cost medical limited. At present, the normal renal function or symptoms such as high blood pressure, after the symptoms but really, is there any good way to treat it?
I am not afraid to face the PKD, don’t be afraid to divorce, but as the only child at home, I always worry if I leave this world, MOM to do? For a long time, I feel the pain and despair. I look on the Internet about PKD’s treatment progress of China, foreign, is the discovery of PKD will not beat me. that means so much to me. You know? I have an idea, I thought like you, sharing things on the Internet, Chinese patients with PKD have a platform that can communicate with each other, share information, encourage patients with PKD to face the disease.
By the way, if you get the chance, you are welcome to travel to China.”
Jie,
Do you have a Foundation like the PKD Foundation where you live? If you check out their website http://www.pkdfoundation.staging.wpengine.com, there are many active clinical trials going on right now and they are hopeful that a treatment and or cure is in our near future. I have had high blood pressure since I was 10 and have taken blood pressure medicines. I think all we can do as PKD patients is eat a low salt diet, drink lots of water, eat healthy and exercise. Pretty much what everyone should do. It is good to make sure that we see a kidney doctor on a regular basis so that they can monitor how our kidneys are growing and functioning. It is also good to get blood work to monitor progression as well. Usually PKD is a slow progressing disease and people are not affected until their late 40’s to early 50’s, but everyone is different. My story is unique because I dealt with issues as such a young age. How old are you? Would be great for you to find other Chinese patients with PKD to communicate with since it seems quite different than in the United States. I have never traveled outside of the US. Would be amazing to see China.
Hi，Valen
We don’t have a Foundation like PKD foundation here.So it’s hard to get useful information of treatment or cure.Traditional Chinese doctors hold that Chinese medicine or moxibustion could delay the development of PKD. But I don’t konw whether really effective.I’m 31.I don’t have high blood pressure now.I’m living a heathy life，no wine，no coffee，low-protein and low salt diet.And another important thing—–be happy.
Hi Jie,
I am sorry to hear that you don’t have a Foundation like the PKD Foundation where you live. Hopefully you can find the PKD Foundation website http://www.pkdfoundation.staging.wpengine.com helpful to get useful information and updates. I’m 30, so we are very close in age. Wonderful to hear that you are healthy and do not have high blood pressure. I have had high blood pressure and have been taking high blood pressure meds since I was 10 years old. Sounds like you are doing all that you can by living healthy and keeping a positive attitude. I commend you for taking such good care of yourself and being happy which I believe plays a huge part in our overall health and well being. 🙂
This post provokes such conversation. I was diagnosed at 15, (now 25) and always dreamed of having a family. I have no qualms about having children in fear of passing it on. Medicine is only improving, and gosh – had my dad decided not to have a family, I wouldn’t be here nor would be siblings (one of which may have PKD). I have been fortunate enough to stay healthy aside from large kidneys. My main fear of being pregnant is the risk of harming myself or a baby. I honestly don’t know if I have the room in my abdomen for a child. I believe this is something worth discussing with a doctor on an individual basis if this is something a person wants. My husband and I both would love to have a family (ideally our own biological kids) and hopefully it will be a dream I can fulfill one day. The worst “side effect” I have is being asked when I’m asked “are you pregnant”? It hurts the most to be asked that question when I wonder if I will ever be able to answer it with a proud “YES!”
I wish you all luck with your PKD journey.. its always nice to have someone to talk to who understands.
Hi Whitney,
Wow, what a moving, touching and beautiful comment full of powerful truth. Thank you so much for sharing your thoughts and your story with us. I hope if you decide that you want a child, that you can answer that question someday with a proud ‘YES’ and have a healthy and happy pregnancy and child. Please keep us posted. I share some of your same sentiments and can feel your positive energy full of hope. I wish you all the best!
I am 30 years old and was diagnosed at 18 with PKD. Always had a feeling I may have inherited what my father had though. I have an aggressive gene and have two children. With my daughter, age 7, they saw multiple cysts on her kidneys while she was still in my tummy. Today she has enlarged cysts, hypertension and may cysts, biggest being a little over half the size of her kidneys,
I made if full term with her but as my deceased progressed,so did the risks. I did get pregnant again in 2010 at 28. Was a surprise to be honest since I was told I couldn’t have kids, It was a rough and scary pregnancy from day one, he was 2 months early and 2.10 oz. but he is healthy today and shows no sign of the disease, being 30 and hsving to make the decision to have my tubes tide was rough. I have always wanted a large family. But I do appreciate what I have. Anyways just wanted to share.
Hi Brandy,
Thank you so much for opening up and sharing your story. I am always fascinated to learn from others. Does your daughter have the recessive form of PKD? I am very thankful to hear that your second child is not showing any signs of the disease. I wish the best of health to you and your family and glad that you were able to have two children.
My Mom had pkd. She found out when she was 53, she had 7 children. I have pkd, found out when I was tested @ age 35. We all were tested when we realized it was genetic. We all already had our families, as much as I love my kids, I would not have had them if I had known I had this disease. It breaks my heart that my daughter has it. My two brothers children all have it. Two nephews and 3 nieces. It’s a terrible legacy. My daughter will never have children. A doctor once asked
me, Why in the world did your Mom have children. I was two stunned to explain to him that she had no idea she had the disease. So happy you have found your peace in your decision.
Dear Dolores,
Thank you very much for sharing your family history and the powerful impact PKD has had on your entire family. You put it very well that it is a ‘terrible legacy.’ I am sorry to hear that you had to deal with a doctor that severely lacked compassion. I am glad my mother had me as I am sure your children are glad that you had them. We must appreciate what we have and we will not let PKD beat us. 🙂 I wish you and your family all the best. Thank you for reading my blog. xo
Hi! Regards for your strong decision….. I am 25, with PKD, with an ugly story of abortion an year ago, when I was 5 months pregnant. That was then that I realized I had PKD, because I did not have any symptoms before. I developed pre-exlampsia and was obliged to abort because of high blood pressure. Now, after more than an year, I have some ups and downs with my blood pressure, although my kidneys function perfectly… I love kids! I want at least one in my life…. But I am afraid 🙁 I am not concerned about passing it or not, since I love my life as it is, I am sure my kid will love it too… But I am afraid of hypertension during my pregnancy and do not have any information of blood pressure medicines which are allowed during pregnancy…. Any advice of common concerns? Hugs 🙂
Olgerta, I can understand your fears. In my first pregnancy I developed very high blood pressure when I was about 32 weeks along and was put on bed rest. For 6 weeks my bp got progressively worse and I was induced at 38 weeks and ended up with an emergency C-section due to concerns about the baby’s vitals. My daughter was born with some signs of intrauterine growth retardation (normal sized head and body length, but very skinny) but she developed just fine and is now a happy, healthy, smart 11 year old. My bp stayed high after she was born and my creatinine jumped slightly, and I started bp meds for the first time in my life. We wanted a 2nd child but were scared! I consulted with my nephrologist and a perinatologist before conceiving again, and did go ahead with another pregnancy with monthly monitoring by a perinatologist (or maternal/fetal specialist) and my nephrologist. I was taking labetalol and procardia for my bp and during the pregnancy actually had to go off the labetalol because my bp dropped! That time my bp was fine until 38 weeks, and I had a scheduled C-section and she was a healthy, chubby baby. I think a lot can affect it. There was a lot more stress in my life with my first pregnancy in 2001, I wasn’t as careful with my diet, and I was on my feet teaching every day. Whatever the case, we did get through it safely the second time around and my bp and creatinine actually improved. Everyone reacts differently and I do think it would be very important for you to work with a good team of specialists starting before conception just to make sure you and the baby stay as safe as possible. Especially key is to make sure your bp is controlled with a safe med (Aldomet, labetalol, and Procardia are the 3 I know) beforehand. Sorry for your loss and good luck in the future.
Hi Heidi,
Wow, it was so interesting to learn all of this about you and I can’t express enough how much I appreciate you opening up and sharing this to help Olgerta and all of us learn from your personal experiences. Sending lots of love to you. xo
Hi Olgerta,
You are so young and I am very sorry to hear what you have endured. I am thankful that Heidi shared her personal experiences with you. I love your genuine positive spirit towards life and wish you strength and all the best with having a child. I always ask tons of questions and am very proactive. I believe that will be important for you to be as prepared and healthy as possible when becoming pregnant again. Please keep us all posted on how you are and if you need anything.
Hi Heidi 🙂 Thank you for sharing your experience, it brought a sense of optimism to me 🙂 I will definitely take in consideration your advice… Best wishes and hugs 🙂
Thanks a lot Valen 🙂 I appreciate it! For the moment I do not feel ready, since it happened an year ago, and I still have problems with my blood pressure, but I hope and pray God everything will be ok in my next attempt…. Wish you all the best! 🙂