After being placed on the waitlist, receiving the call for a kidney transplant is a happy occasion for many PKD patients. The chance that PKD, with its genetic nature, might not end with a transplant can lead a family down the path all over again. Join guest blogger Rob Herman as he continues to share his and his family’s story about how PKD has impacted their lives:
Once a person gets on the transplant list, there is a high level of excitement, nervousness, and anticipation as you wait for “The Call.” I have three questions for any transplant recipients:
- How many times did you receive “The Call” before your transplant?
- What time of day was the call(s)?
- If you received multiple calls, why?
Rob during his kidney transplant ultrasound.
I ask because I received two calls before my kidney transplant. The first came at 4:45 a.m. Heartbreakingly, I had to turn it down because I had the flu. Yep, years on the transplant list and when “The Call” finally comes in, I have the flu! My second call came about eight weeks later at 11:30 p.m. The donor had had tuberculosis in the last ten years, and due to my compromised health, my doctors and I thought the risk wasn’t worth it. (At that point I was thinking they only call in the middle of the night!) My third and final call was a voicemail, which I still have saved today, that came at 10:30 a.m.
Through everything I had to go through, the worst part of my kidney transplant recovery wasn’t the surgery, but the pain from my migraines and heavily bruised fistula arm from dialysis. (I sure wish I knew if migraines were related to PKD.)
During the time of my dialysis and transplant, my 4-year-old daughter, Kaley, was experiencing some headaches. Over the next year, these seemed to become more regular. I silently prayed I had not passed on my debilitating migraines to our precious little girl. Linda and I never dreamed the headaches were due to polycystic kidney disease.
Rob’s daughter Kaley before brain surgery.
Kaley was five when we took her to her pediatrician, who ordered an ultrasound. We then got the call no parent wants to receive: “Please take your daughter to the E.R., where the neurosurgeon will meet you.”
What was causing her headaches? We were told Kaley had a large cyst attached to the base of her brain and she would need surgery.
No, I hadn’t passed on my migraines to our only biological child, but I was responsible for passing on my ADPKD.
For those of you who have experienced this, you know the guilt can, at times, be overwhelming. It tore me up inside, even more, when I had to literally hold her down while she screamed in pain as the nurses repeatedly attempted to insert an IV into her little arm.
Today, thank God, Kaley is a beautiful 13-year-old girl who is ready to take on the world, even with kidneys covered with cysts. She certainly does live by the Herman motto of: Never Give In! We pray you do as well.
Next time, our “Journey” really gets captivating.
If your child is suffering or has suffered, with PKD, please share your story in the comments below.
My son was born with PKD, he was 4 weeks old when I was told the news, but we have no idea which form he has. As he has defied all expectations.
We have no family history, his dad is adopted and made no attempt to find his birth family. He
My son, about to turn 24, developed high blood pressure at 4 months, which has been challenging to keep under control. He has also suffered with migraines, although in recent times these have become less frequent. His energy levels have never been fantastic. He also has asthma, eczema, an allergy to nuts and dyspraxia. (He always jokes that anything wrong in the family he gets!!) 😰
He has coped so well over the years, despite having had some horrible blood test experiences which led to a needle phobia. As a child he once said to me, when they wanted him to join ha group for children with chronic illness, that why would he want to talk about it, he has to live with it, that he would leave the worry to me!! This approach led to him leading a full life. He went to Malawi, to work in a village, with his school, I’ve always been grateful to the teacher who was prepared to take him when many wouldn’t have. His nephrologist at the time wasn’t keen, but his paediatrician was keen for him to do it!!
He has since gone to university, where he gained a good degree. He is just moving into his own place and looking to the future.
He has joined the Genome project her in the uk, hoping it may shed a light in his PKD, for him and others, so he knows what his chances are of passing on the gene.
I was told he would have reb failure by the time he was 5, then 10. The unknown is hard, each time he goes we don’t know what we will be told. He has been stable at about 35% function for a while now, but as his appointment roles round this week I get nervous.
I am so grateful to the wonderful Drs he has had! When I held my baby in my arms all I wanted was for him to start school, now I see my kind, caring, thoughtful young man, who has never once made a fuss or drawn attention to himself, going off into the world.
As a Mum it’s been hard and I have times when I’m sad, but life teaches us that none of us know what is round the corner.
I like to hear the positive stories!! We don’t know anyone else with PKD, and the old folk in the rental unit here in our home town can be fairly negative!
THANK YOU so much for sharing your beautiful story with me/us! I could feel every word in your story; it touched my heart as I, and my daughter Kaley, can absolutely relate to your family’s trials.
All of your son’s nagging issues – the eczema, migraines, asthma, etc., are things I also deal, or dealt, with. And it’s those nagging things that often effect our psyche more than the actual PKD!
Please continue to stay positive. My motto: Never Give in! (N.G.I.)
I would be honored to send you and your son my book: “Naked in the Middle of a Tornado: The True Story of One Family’s Unbelievable Fight Against PKD”.
Just email me your address at nakedinthemiddleofatornado@gmail.com.
Or it is available on Amazon, or this PKDcure website under “Resource Library”, then scroll down to “Great Reads”.
Thank you for sharing your journey Rob. My husband inherited PKD from his Mother’s side of his family and we like you have one daughter. My husband was formally diagnosed three years after our daughter was born. My husband received my kidney in 2007 and enjoyed 6 years of a renewed life passing away from complications of melanoma of the bone marrow. Our daughter also inherited PKD from her dad, but wasn’t formally diagnosed until two years after her father passed away. The ultrasound portion of her diagnosis read almost identical to her father’s first ultrasound. She and I feel very blessed that at age 34 her kidneys are functioning at 100%, and so far she hasn’t experienced many of the side effects that her Dad did such as cysts bursting, and severe leg cramps. I believe that her father’s great attitude toward life, (his motto was Live Life Until You die (in other words don’t let anything get in the way of experiencing life although at times that was easier said than done) and growing up on the regimen of PKD diet and exercise have a lot to do with maintaining her health.
Blessings to you and your family.
Hi Karen,
Thank you for sharing your story with me/us! I am sorry for the loss of your brave husband. It helps me to share my story – though for a long time I just kept it to myself thinking no one really cares about all my health problems – so I pray it helps you (and others) when you share.
That’s why I started saying, “We know what it’s like to be in the middle of a tornado, and all this stuff flying at us, with nothing to hold onto but each other.”
Thank God your daughter is not suffering from her inherited disease. Please make sure she gets checked regularly for aneurysms – the silent killer I blogged about previously.
Prayers for the both of you. Rob
I´ve known I had ADPKD since I was 18 (had a pain, got an ultrasound, got the news – ended up pain had nothing to do with adpkd). Subsequent Dr. visit informed that there was no cure, just had to live life normally. That is what I did. Eventually had my son when I was 24. Didn´t think it would be a problem. When I was about 28, had a a severe infection in one of the cysts and ended up in the hospital in FL for a month (long story). While I was in the hospital, I decided I needed to have my son checked – I just wanted to know if I somehow had passed this along to him. Sure enough, already had 4 cysts. It was only 4, but it was as if they told me hundreds, all the same to me. My little boy had the same thing. Even though I had not had any complications until then, all I wanted to do was cry.
Years late I had two more children (girls). Only one of them was positive. The pediatrition has along the years always done yearly ultrasounds just to “build a history” as I have no one in the family with ADPKD. Dan, the oldest is now 25 – still never had any complications, and neither did Sofia. The youngest still have no sign, I assume she´s free as this is supposed to be from Birth (so I´m told and have read). My BIGGEST fear all along, was that ONE DAY when I need a transplant, that I would end up with one that would have eventually been usefull for one of my kids. Never thought much about the whole desease – just lived life normally as “there is nothing I can do to alter it´s course, other than control high blood pressure”, but the nagging feeling that if one of my family members ended up giving me their kidney – that there would be none left form them when they deeded one. This aspect was just TOO overwhelming for me.
Dan never really had any problems, except that he started to have high-blood pressure issues back in 2013, REALLY high blood pressure – but nothing consulve that it was from ADPKD. All type of exams, heart doctors, Nephs, everything, and no one could control it. Basically he´s been running on 190/120 for the longest time. Recently he had a tonsil operation – supposed to be a in/out thing, and ended up in the hospital for a week because they just could not control the BP – they tried ALL types of combinations, IV and oral, nothing worked. As soon as he got out we went to a heart doctor whom somehow perscribed meds that got him NEAR regular (140/90)… he is now in the process of doing other exams to try to figure out the cause – basically why it was so hard to control too
.
Dan lives his life to the fullest, doesn´t worry about his ADPKD – he´s super active, can´t stay till, but he does take care not to get hit in his kidney area in contact sports – probably the only thing he watches out for. And, he usually eats rather healthy, but not because of his kidneys, he´s always been that way (not really into fried food, likes veggies, not too much meat, no colas, mostly water, etc.). Both Dan and Sofia ( only 16) – are still working at 100%.
The one thing that has made a diference for me latelly in dealing with their ADPKD is the fact that (from what I read) there will one day be a “bionic kidney”, Still in testing right now, still early, but hopefully by the time they need it, they will not have to go through what I´m about to go through – Next month, if all goes well, I will have my transplant (from live doner) – I just pray that it doesn´t scare them, I don´t want them to dwell on something they can´t control or cure. Just want them to live life as any other normal, healthy person does.
Hello Paula!
I am so grateful for you sharing your powerful story. I am always mystified when someone finds out they have PKD and no one else in their family line passed it on. But you all have a great attitude – “don’t worry about it since there is basically nothing we can do’ (and your son Dan is doing everything right).
The Foundation (with all our help!) and other companies are making great strides with researching medicines, non-human replacement parts, and many other “cures”.
Congratulations on your upcoming transplant Paula! Our family will be praying you, your donor, and your family. Please let me/us know how it goes.
Never Give In! (N.G.I.)
Rob Herman