ARPKD Conference

As you know, the reason we went to NYC was for a conference for parents and caregivers of children with PKD. I am SO glad that we went. I cannot describe to you the feeling of knowing that there are other families like your own. Families in the middle of waiting for kidney failure, monitoring growth, and taking care of children with special needs. We met a couple of families that we will keep in contact with, and if that were the only thing that we got out of the conference that would be enough! But it wasn’t all that we got!! I found it funny that when talking to other families, we would say, “Now do they have AR or AD?” It was so normal to us, but you could never get away with that in a regular conversation!!

A little Q& A time!

Each time a speaker spoke, they allowed us to ask questions and we had whole time periods of Q&A. Plus on top of that the Dr.s ate with us and allowed us to personally ask questions too. I found that to be helpful. All the sessions were good. Overall, we got some new information on the kids’ blood pressure and we will be changing our diet to help lower blood pressure too. It was exciting to hear leading specialist describe and talk about the disease. She was very passionate and down to earth.

Here are some of the points I took away:

– Clearer understanding of the difference between the dominant and recessive form of PKD. (Where exactly the cysts are in/on the kidney)

– Clearer understanding of what CHF is, and where the kids are at. (Liver bile ducts get enlarged and clogged)

-Reminded us that the internet and Google are not the best sources of information for parents or doctors!

– Renal diets should contain foods that are low phosphorus, calcium, and potassium. We will have to cut out much more once the kids’ kidneys begin to fail. The dietitian recommended everyone should eat like a diabetic for a healthy lifestyle.

– The kidney failure slope is not even, there are many plateaus… I believe we are in a plateau right now!

– Being more aggressive with blood pressure medications can extend the life of the kidney 2-3 years.

– Monitoring blood pressure once a week can help the doctors determine accurate readings.

– Growth spurts can cause the kidneys to fail faster — yay for short kids!

– Life expectancy keeps getting  longer

– The average age at which kidneys fail is older than we had originally been told

– Women with one kidney or kidney transplants can have a healthy pregnancy and have healthy children

– The dominate form of the disease can happen in children

– We MET and TALKED with other people like us!

The changes:

Keeping in contact with our new connections! One of which being in Atlanta!

Now that we have learned more, we are going to be taking action to help the kids with their blood pressure and with their diet. We are going to be doing a diabetic/hypertension/clean/renal friendly diet. I have met with one of the dietitians here and let me tell you, it was a waste of my time. So, I have checked out almost every diabetic, hypertensive, clean diet recipe book from the library! I have read about the DASH diet (for hypertension) but some of the foods that are good for blood pressure are bad for kidneys. So, there is no perfect diet out there for our needs so I am making one up! I basically am taking all the good for kidney foods and working out from there! Danny suggested we all just do the diet together, yay! , but we will have to supplement more calcium and potassium in our breakfast and lunches so we don’t become deficient. The changes we are going to make are:

-We will be switching up grains. Whole wheat and brown rice are best for you but they contain a lot of vitamins that the kidneys can’t process well when in failure. So, to compensate we will rotate between whole grains and white grains.

-Eating fish at least twice a week, once for lunch and once for dinner. Lean meat are good for the ticker and their bodies need the Omega-3s.

-Eating meat for dinner two times a week

-Consuming veggies and fruits that are kidney friendly, and not high in potassium, phosphorus and calcium

-Limit salt to one tsp a day – which I don’t use a lot of salt, but I have gotten rid of all salt based spices and prepared foods.

– Eating one vegetarian meal and one beans and rice meal for dinner once a week.

– Eating more foods that are antioxidants to help avoid oxidation.

I think that is about it! It has been fun reading and planning. I am hoping that maybe if we make these changes we will see some natural change in the kiddos blood pressure and maybe even Bentley’s pH balance.

The next change I want to make, is making suggestions at our next nephrology appointment about blood pressure monitoring. We hope to purchase a blood pressure cuff and a stethoscope to monitor blood pressure once a week a home. Monitoring at home will help us see how we can progress. I also hope to have our nephrologist help me understand the labs more and help me chart things on my own so when our Dr. retires (hopefully not soon, but definitely before the kids are 18) or when transplants happen, I understand my kids needs more. Understanding the labs can also help me figure out what they need to eat too!! Because we are past diagnosis and “survival mode,” I finally feel like I am at a place where I am comfortable and ready to be very knowledgeable.

So, as you can see we learned a lot and that is only what I processed. There was a lot that I am sure that I missed! We were so grateful for the opportunity to go and learn!! Thanks for being interested!!

xo, nikki :)

PS- I had a moment, a brief one, when the Dr. were describing the lab rats and I thought, “Aww, poor rats!” and had to remind myself that it was for our benefit! Silly, I know?!


2 thoughts on “ARPKD Conference”

  1. So glad you guys were able to go! Sounds like you learned A LOT! I just found out today about this “superfood” called spirulina and it’s supposed to help a lot with blood pressure among other health benefits. I haven’t researched it a lot yet myself but know some people who use it as a supplement in smoothies and such. Of course there is warning to be careful where you get it from as with other food supplements. But anyway, wanted to mention it in case you wanted to ask your doctor or nutritionist about it. :)

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