I’ve been seeing nephrologists for 23 years since my diagnosis of PKD when I was 10 years old. The first time I met my pediatric nephrologist, I was told:
- PKD was one of the best diseases to have
- I would follow the same family history as those before me
- It wouldn’t affect me until my late 40s to early 50s
My PKD journey unfolded differently than expected. It’s interesting to think back to my experiences with different nephrologists over the years and how I’ve matured as a patient.
I don’t remember too many of my interactions with my pediatric nephrologists. Since I was a child, my parents took the lead on most things. I was the patient who endured the disease and my mom and dad were the caregivers who handled everything else. Now, as an adult, I realize how much work and stress that was for my mother and father.
When I was 18 years old and in the hospital for almost a year because of PKD, I graduated to an adult nephrologist. My parents continued to coordinate all of my care with my doctors, as I was too ill to do so on my own. It was not until after my transplant, at age 19, that I became my own advocate and took the lead on my care with my doctors.
Since moving from Pennsylvania to California six years ago, I have had an extraordinary nephrologist. I was impressed with Dr. Bhat from day one. Moving and changing doctors can be scary. My records were transferred from Johns Hopkins Hospital in Baltimore. I anticipated my first appointment would be going over my extensive medical history, but I was wrong. Dr. Bhat blew me away by his knowledge of my long and complicated health history. He definitely did his homework and impressed me.
I get monthly blood work done and see Dr. Bhat every four months. I enjoy my appointments with him because he is very thorough and I always leave with a greater knowledge of how to better care for myself, which makes me feel empowered.
Other things I do to take charge of my health include the following:
- In between appointments, I take notes on questions that are not urgent but that I may want to ask him
- If I read an article related to my health, I take it with me to get his input
- I make sure I understand all of my lab results and why some of my numbers may be on the low or high side
- I take my blood pressure cuff with me to double check that my blood pressure numbers match the results taken in their office
The relationship you share with your doctor matters. It is important that we find a person who cares and who we can communicate well with. Some of the things I do to ensure I communicate well with my doctor include preparing a list of questions before my appointment, being honest about my health and open about any concerns I may have. And I always leave my appointment with notes to help instruct and remind me of any medicine changes or health tasks I must complete.
I remember that, as a child, doctor’s appointments seemed scary and overwhelming. As an adult, sometimes they can feel this way, too. We can leave the doctor’s office overloaded with information, which can be stressful. If you feel this way, consider taking a family member or friend with you to provide support and help digest and document the information your doctor provides.
Our health is in our hands. We have control over what kind of patient we are, what doctors we choose to help take care of us and the way in which we care for ourselves. It’s fun to think back to the 10-year-old girl swinging her legs on the patient table listening to her pediatric nephrologist, and how she transformed into the educated and empowered woman I am today during my doctor’s visits. I’m proud of the patient I’ve become and I hope you are proud of the patient you are, too.
Has it been awhile since you had a check-up with your physician or nephrologist? In honor of National Kidney Month, today’s PKD Challenge #11 is to make an appointment today!
What is your relationship like with your nephrologist? What tips do you have to better communicate with your doctor?
I think it would be great for some one to list Nephrologist that are knowlegeabe about PKD.
My daughter has gone to two here in San Diego, Ca and they do not seem up to date on anything. I had to call a friend who is a physician and ask him what to ask or what should his response be. One doctor said your labs are fine. i dont need to see you for another year and that was all and she was just diagnosed (30). It is very frustrating. I left a msg with the PKD chapter here about a nephrologist and never received a reply. I just needed to let it out.Thanks for reading(O:
Hi Mary,
I am sorry to hear that you have not found an ideal nephrologist yet for your daughter. Also, sorry that you did not get a response back from your local chapter. I just posted a message on my Facebook page in hopes to get good recommendations for you for a nephrologist in San Diego. I will be in touch when/if I get any suggestions.
Also, Michele’s suggestion below is great. She said, “I would call a hospital in your area that has a good transplant program and ask the transplant team if they can recommend a nephrologist who is well versed in PKD.”
Wishing you the best and please let me know if there is anything else I can help with.
Hi Mary,
I know I’m responding really late to your comment, but I did want to agree with Valen. Dr. Kimberly Harper is excellent. She’s been my nephrologist for over 10 years. She is thorough and kind. She spends as much time with her patients as they need and doesn’t rush through the appointment. Actually, all of the Scripps doctors I’ve come into contact with are top notch, and unfortunately, I have had to see many. I hope your daughter is doing well and has found a Dr. that she is comfortable with.
Hi Mary,
Received my first San Diego nephrologist recommendation for you! 🙂 My friend said, “Dr. Kimberly Harper…Scripps nephrologist. She is also a huge advocate for PKD studies!” Yay! Hope this helps!
I would call a hospital in your area that has a good transplant program and ask the transplant team if they can recommend a nephrologist who us well versed in PKD.
Thanks for sharing this great advice! 🙂
I agree with you this is great advice i am also thanks for sharing this great advice. I also have some problems with my ear and throat and was showing to an ent doctor long island and I do accept as true with that you have to show yourself to a particular expert for you trouble, in preference to displaying to a ordinary clinical medical doctor.
I agree, Valen! We must be our own advocate to ensure we receive the appropriate care along with a healthy dose of compassion and kindness.
You wrote down great pointers. I have this notebook I started when I was first diagnosed. It helps me prepare for my appointments by writing down questions and noting results, comments, etc. at each appointment. I clearly enter the date and all the data every time. I also keep clear notes as a “medical journal” that my family might someday need to consult.
Regarding Mary’s comment, I am sorry to hear she received no immediate response. My local chapter has always been quick to respond when I addressed them with questions. However, sometimes people who lead the chapters do that kind of thing on the side and don’t get to respond until much later.
Thank goodness this site is powered by an angel:)
All my best:)
Hi Karin!
Thank you for sharing how your doing a great job being an awesome advocate for yourself, by keeping a medical journal full of your important health information for yourself and your family-in case they would need to reference it.
I’m glad you have a great local chapter.
Your last sentence/sentiment put a huge smile on my face and warmed my heart. A wonderful way to wrap up my day. Thank you! xo
Hi,
My 10-year old daughter was recently admitted to the children’s hospital where she was diagnosed with nephrotic syndrome. We had never heard of this or had any issues before. We are scared and have no idea what this all means. I am literally headed to our first visit since our hospital stay and feel like I have no idea what to expect or what to ask. We have been keeping note about changes, questions about meds, activity, and concerns. What advice would you give as we navigate this new terrain?
Thank you for sharing and reaching out, Susan. Please call the PKD HOPE Line at 844-753-4673 and our team can help you navigate through this difficult time.
Hi Susan,
I was diagnosed with polycystic kidney disease (PKD) when I was 10-years-old and can empathize with how confused and scared your daughter must feel and also sympathize with your emotions now knowing how my mom felt back when I was young. (I am now 37). Have they found a specific cause yet to her kidney damage? Is it because of PKD?
Your fears are totally understandable, especially with all of this happening out of the blue. Taking my health journey one step and one day at a time has helped me manage it all. May sound simple and silly but sometimes it is the best we can do amidst all of the chaos and stress. You keeping notes is a wonderful start to this new journey and something to keep up. First it is important to know if there is a specific diagnosis/cause to your daughter’s kidney damage so you can see a specialist for it and learn and do all you can. The more answers and details you can get, the better you can understand how to treat her symptoms and condition. I hope that since you sent this message, you were able to learn a lot at your first visit and that your questions have been answered. At this point, gathering all of the information you can is important, also writing down all of your questions like you are doing is important because it is easy to forget thoughts with all you have going on. It is important to monitor how your daughter is doing and note any changes in how she feels and if something seems off then always communicate with her care team. It is important for her to listen to her body and communicate how she is feeling with you so you can help take the best care of her. If she is diagnosed with PKD, I would be happy to help answer any questions you have as I was diagnosed at 10 and have lived through basically all aspects of the disease and now have a kidney and liver transplant because of PKD. And if it isn’t PKD, I am still happy to help however I can as I have been living with, managing and navigating life with several chronic illnesses since a child. Feel free to visit my website if you would like to learn more about my journey and connect with me personally. http://www.valenkeefer.com I am wishing you and your family all of the best during this uncertain time and am here if I can be of any help.