IROC’s mission is to partner with patients with kidney disease and their caregivers to achieve health, longevity and quality of life equivalent to the general population. To start, IROC committed to improving blood pressure control within this group. As part of an ongoing conversation, our community members reflect on blood pressure control and how it impacts their family.
Mother to a Transplant Recipient
Our daughter is now 11 and had a kidney transplant nearly 10 years ago. We are very diligent about her care and have worked hard to give her a normal life, despite her medical challenges.
Our daughter was on amlodipine pre-transplant to control high blood pressure but didn’t need it after transplant. Her BPs always seemed fine at clinic and we didn’t monitor them at home on a regular basis. About five years ago, our nephrologist asked us to start doing annual ABPMs and the results were normal each year. She hates wearing an ABPM cuff because it is heavy and awkward and it makes her feel different than other kids. She now wears the cuff on weekends and stays at home so she doesn’t have to see anyone.
When ABPM results started to creep upwards a few years ago her nephrologist asked us to do a better job monitoring her salt intake. Our daughter didn’t eat until she was two, so we were proud of any eating she did immediately following her transplants. Her diet included fruits and veggies, but also “kid foods” like Kraft macaroni and cheese, goldfish, Cheetos, pizza, hot dogs, etc. Now I was searching and purging these high sodium foods from our pantry! Last year her ABPM came back abnormal several times so she went back on amlodipine.
I was in disbelief and a wave of guilt hit me. With everything I had done to keep her as healthy as possible, why didn’t I know to watch her salt intake from the beginning? I started to regularly monitor her BP with our automated machine and sent the results to our transplant coordinator. Luckily, the medication was working.
I learned last December of IROC’s recommendation for home manual BP monitoring. I tried to get equipment through our hospital but our insurance won’t pay for it so I turned to the internet to order it. The first manual cuff was for an adult (too large), the second was pediatric (too small). I have yet to find a medium cuff size attached to a manual machine that works for her (just right!). I then watched youtube videos to learn how to take the manual readings, and I tried to fit them into our busy morning routine. I was not very successful as I couldn’t always hear our daughter’s BPs. I need the right equipment and manual BP training.
After a few weeks, I went back to taking automated BP readings several times a week. I like seeing that her medication is helping to maintain her target BP. I enter the readings in an excel document and email it off to our transplant coordinator. I wish there were an app to make this all easier.
I am still worried that there is more that I can be doing to make sure her BP is under control. I also worry that she binges on high sodium foods at school or when she goes to friends’ houses. As a pre-teen, I am trying to let her understand the importance of taking care of her own meds, water, and sodium intake. It’s a daily challenge to let her be “normal” despite her transplants.