You or a family member have been diagnosed with Chronic Kidney Disease (CKD). This is life altering for you all, period. The positive - You will learn and adapt and most importantly keep on living your best life!
Why did this happen to me or my family member?
There is not always an answer to this question, sometimes a direct correlation can be made other times not. The 2 main known causes are high blood pressure and diabetes.
What becomes more important after you get through this stage of trying to understand why is how you and your family handle it going forward to live your best life.
Can I stop my kidney from failing and progressing to requiring dialysis?
Listen to your doctor’s advice, if you feel you want a second opinion get one, read up on all you can, gain knowledge, but if you are reading this most likely your doctor has told you it is time and maybe you are wondering how long until you HAVE to get on dialysis.
You don’t want to wait until it is an emergency situation. It takes time to heal from the procedures that will allow your blood to be dialyzed. For example, a vascular access for hemodialysis takes 4-6 weeks to mature enough to be used, if you wait too long for this surgery, an emergency catheter might need to be placed which is more prone to infection. It is safer to give yourself time regardless of which type of access you choose. More on this later.
I have to go on dialysis. How to choose the best option?
Accepting that you or your family member has to be on dialysis is a huge mental hurtle for most people. Once you have accepted this, the next step is to figure out what works for you and your family. While the patient is dealing with this physically and emotionally, close family and friends who are part of the support system are also affected and depending on the option you choose might need to be involved to help you all maintain a happy life.
Some questions to consider
Who are you?
Are you a private person who doesn’t want people to know?
Are you a social person who wants to interact with others on dialysis?
Are you not sure how you feel about it all?
What kind of lifestyle do you need to stay sane?
Do you want to keep this private and manage your treatments on your own? This would include training.
Do you want help and have professionals manage your dialysis treatments?
What time commitment works best for your life schedule?
3 days a week, ~3-3.5 hrs a day (hemodialysis in center or at home)
7 days a week, ~4 times a day, ~30-40 min exchanges (peritoneal at home)
7 days a week, 1x overnight includes multiple exchanges (automated peritoneal at home)
6 nights a week or every other day, 1x overnight treatments (hemodialysis at home)
5-7 days a week, ~2hrs each day (short daily home hemodialysis)
*stay tuned for an upcoming blog focused on in home hemodialysis
Do you work or go to school or are you retired or not working?
If working or going to school
Can your work schedule work around dialysis center hours? (Keep in mind travel to and from the location, as well as delays on site if hemodialysis)
Is having the flexibility to do dialysis on your own schedule important to you
If retired or not working
If considering in center dialysis - what is your typical sleep pattern? Are you a morning or an evening person? Determine the dialysis time that will have the least impact to your natural rhythm and happy time.
If considering at home dialysis, ensure you can create a clean space for treatments
Physically, what can you handle?
Small incision in your abdomen for access (peritoneal)
Surgical procedure for vascular access placement and regular checkups to ensure it is working properly (hemodialysis)
Full surgery (kidney transplant)
Other considerations include wanting more freedom in terms of diet and medication regimen.
Thinking about these questions ahead of time can help as you choose between the 2 types of dialysis treatments reviewed below.
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) gives a thorough explanation of how peritoneal dialysis works with visuals here. I would read this for details.
A quick overview in regards to the questions above is below:
Physically – This is the gentlest on your body including your heart, as it uses the lining of your abdomen to filter your blood inside your body.It requires minimal surgery to create a port in your belly which you use for fluid exchange.
Lifestyle - It can be done in your home, and it will require you and potentially a family member to manage the large amounts of dialysis solution that are used, and to keep track of the exchange time for the solution. It is typically easier to manage for those younger than ~80 yrs old.
Social – You can keep this private, people won’t necessarily even know you are on dialysis if you manage it well. The port is on your belly, so a shirt and even a swimming suite can cover it. You won’t interact with anyone else who is having dialysis unless you want to.
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) gives a thorough explanation of how hemodialysis works with visuals here, and LifeOptions has a nice review of options and considerations here as well.
A quick overview in regards to the questions above is below:
Physically – This is more taxing on the body, but also commonly used. It requires a vascular access surgery. There are 3 types of vascular access options (AV fistula, AV graft, and venous catheter), the NIDDK reviews these in a document here. Your doctor will most likely recommend which access option is appropriate based on your need. You will also have regular checkups to ensure this access is healthy.
Lifestyle – Typically this is done at a dialysis center, with professionals managing your dialysis treatments, but can also be done at home with training, which allows you to make your own hours in terms of when to get treatment.
Social – Your access will be visible, so people will ask or at least notice it. If you go to a dialysis center for treatment you will see some other patients and technicians regularly.
The third option is typically not an immediate option. You will have to be evaluated for your eligibility to be put on the kidney transplant list. Then you have to consider the risks and lifestyle changes for transplant recipients. The NIDDK reviews it well here. There are definitely pros and cons, I have listed a few below for you and your family members to consider.
This is proper surgery, you will be in the hospital several days after surgery
For the rest of your life with this kidney, you will be on anti-rejection medicines which suppress your immune system and can lead to infections, so you will need to be extra careful
You can potentially reject the kidney and have life threatening complications during and after surgery
Transplanted kidneys don’t last for a lifetime typically – it can give you many years living dialysis free, but there is a good possibility that you will need another kidney transplant later in life or to go on dialysis
On the positives, you can travel easier, your diet will be more flexible, and you will not be on dialysis.
Bottom line- You have to think of your comfort level. What works for you to help you live the happiest life. Remember: Different strokes for different folks. You have to be true to yourself and what you feel comfortable with.