To start this series, we are going to attempt to tackle the first three questions we had when we were told this was our new reality.
First, the main question: What is ESRD?
End Stage Renal Disease is the diagnosis for the more understandable term "kidney failure." Basically, it is when the kidneys stop working and the person is in need of dialysis and/or transplant.
An amazing website to help you through this journey and to explain the intricacies of the diagnosis is hosted by the National Kidney Foundation (NKF). See their page about kidney failure here.
Another decent program is the American Kidney Fund (AKF) which helps families understand the diagnosis and works to ensure every family with kidney related diseases has health coverage to support them throughout this process. Check out their site here!
Then, people usually ask: How do we fix it?
Sometimes kidney failure is caused by an unrelated disease which, if cured and given time to heal, the kidneys can be saved. However, if diagnosed with ESRD, it is not likely to happen. For these families, the first step is dialysis until transplant qualifications are reached.
There are two types of dialysis which are recommended based on the size and age of the patient. If the child is below the age of 18, peritoneal dialysis is most recommended. It is less invasive and easier on children's bodies.
Peritoneal dialysis (PD) consists of a tube (catheter) placed in the tummy, or the space between the organs which is called the peritoneum. Through this tube a solution is placed in the peritoneum to filter through the space and collect all the bad stuff, like the kidneys would do. Then, it is drawn out after so much time. This process is repeated until the end of treatment, or until all the bad stuff has been appropriately filtered from the body.
This type of dialysis can last up to 24 hours and can be done daily at home or every other day based on the patient's needs.
See the NKF's more accurate explanation here.
The other option is called hemodialysis. This type of dialysis is more invasive and isn't always suited for young children, but if PD fails it can be used as a back-up. Most of the time, this type of dialysis is used for adults.
Hemodialysis (HD) is where a catheter is placed into the neck/chest area. Whereas the PD catheter had one tube, this catheter has two tubes that go into the body at one place. The reason for the two tubes is so that one tube can put in filtered (clean) blood while the other is taking the dirty blood out to be filtered.
This type of treatment usually lasts for 1-2 hours and is done several times a week at a hospital or clinic. It is rarely done at home, especially for children.
See the NKF's more accurate explanation here.
Side Note: There is something called Continuous Veno-Venous Hemofiltration (CVVH). In most simple terms, it is long-term hemodialysis. It can last about as long as PD, but has to be monitored by a nurse every 30 minutes because it can easily dry a patient out (take too much fluid away from the child).
Transplant doesn't happen until the child matches certain requirements. Until then, the above options are exhausted.
Finally, after parents understand what they're facing comes the big one: What can we do?
There is so much parents can do even though they may feel most of the beginning days/weeks/months are spent waiting on the doctors to figure out how to properly dialyze baby. Don't just sit around!
During this time, if kiddo has been diagnosed with ESRD, parents can apply for Medicare and Medicaid - even Supplemental Income from Social Security - to help pay for the soon to be looming medical bills. If done immediately, all bills can be covered before they're even sent to the parents. Talk about a stress saver. (Personal Note: We waited too long and even 11 months after diagnosis, we are fighting to pay bills or have Medicaid do it).
Also, parents can start looking for support groups. Even if not a share-y, feel-y type, a support group is a great place to relay fears, ask (stupid) questions, and find solace in the fact that "you're not alone."
Furthermore, parents need - yes need - to create a phone-tree, or something similar like this blog, to keep family, friends, and otherwise informed on what is happening. Why? Because those people can support the family whether it be providing food, grocery money, etc. One never knows when that support will save them. (Another Personal Note: It has helped us so very much and our thanks to our support group is endless).
Lastly, parents can prepare themselves for the days ahead:
1. Think about how this time will be remembered, treated, and explained in the future. Consider getting a book to be signed by all the team members (nurses, doctors, etc.) so kiddo can see how many people helped them. (Personal Note #3: We have a pillow shaped like the build-a-bear logo that we got when we arrived at Cook's NICU, or Neonatal Intensive Care Unit, and had a permanent maker that all nurses, doctors, etc. used to sign the pillow with. It's called her NICU memory).
2. Create a plan of action with doctors, nurses, social worker, financial advisor, and pastor (even if not religious); have all the team members on the same page. Try to knock it out in one meeting that all of the above attends.
3. Find ways to celebrate the small stuff. Look for any opportunity to be happy. Baby drank 10 mL = success. Kiddo didn't throw up in the last two hours = dance break. These special moments, even so small, are key to staying positive when so much is going on.
