Dealing with Dialysis While Living with Lupus
There are two main types of lupus. Discoid Lupus, which affects the skin and Systemic Lupus Erythematosus, that basically affects everything else. SLE can present itself differently and vary in severity between lupus patients. When lupus causes inflammation in the kidney or kidneys, it is called lupus nephritis. Sadly, this is one of the most serious complications that can result from SLE. It is estimated that about one-third of those diagnosed with SLE will develop kidney involvement and If not diagnosed and treated early enough, kidney nephritis can lead to significant illness, permanent damage and sadly, even death.
The kidneys are the primary organs of the renal system and play a pivotal role in maintaining one’s overall health. The kidneys are responsible for maintaining the correct amount of body fluids, removing toxins and waste from the body, and regulating the hormones that help control blood pressure and blood volume. When kidney disease or lupus nephritis comes into play, the kidney’s cannot maintain that proper balance and dialysis may be needed to help with that process.
Starting dialysis can be a scary and overwhelming process. We, at Kaleidoscope Fighting Lupus, hope this blog sheds light on this type of treatment, and by sharing this experience others out there feel less alone.
WHAT IS DIALYSIS
“The process has been one of the most emotional experiences I have been through. You try to be strong and understand this is something you have to do for the rest of your life. This is something that has happened to you and you can either give up or push through… This process has taught me that l am strong. That I can and will fight.”
– Jazmine, Lupus Nephritis Patient
Essentially, dialysis is the artificial replacement for lost kidney function. It takes over when your kidneys can no longer remove excess fluid and minerals, or filter waste from the blood. It is used for acute (sudden) kidney failure or for chronic kidney disease, like lupus nephritis.
HOW IT WORKS
There are two types of dialysis:
Hemodialysis: Hemodialysis removes wastes and fluid from your blood by cycling it through an external filter called a dialyzer. Usually, a needle is inserted into graft (in the arm or chest) and then connected to a port on the dialysis catheter. The blood is pumped through the dialyzer, processed, and then pumped back into the patient through another tube. This can be done as an inpatient or outpatient therapy at a dialysis clinic or hospital. Conventional dialysis is usually done 3 times per week and treatment lasts about 3-4 hours.
Peritoneal dialysis: Peritoneal dialysis uses the lining of your abdominal cavity, called the peritoneum, as a filter to remove waste and excess fluids from your body. Before having peritoneal dialysis, a small catheter will be surgically implanted into the abdomen. This is kept closed off, except when fluid is being introduced or taken out of the abdomen.
There are two types of peritoneal dialysis: continuous ambulatory peritoneal dialysis (CAPD) and automated peritoneal dialysis (APD). With CAPD the dialysis solution will stay in the belly for 4-6 hours or more. And the solution is changed at least four times a day. With APD a machine is used to cycle and empty the belly with the dialysis solution 3-5 times during the night while you sleep. You may even do an exchange with the solution dwelling for the daytime hours.
Lowers mortality rate
Helps control blood pressure
Most people can live normal lives and work
Sometimes you can have dialysis when you are sleeping
It can delay the need for a transplant
Can be costly
Infection at port or graft site
Lifestyle changes (Dialysis diet)
Most women cannot get pregnant while on dialysis
HOW TO DEAL
If you have recently been told that you need to start dialysis, you may be feeling a lot of different emotions. And that is okay. We are here to support you. And as lupus survivor Jazmine states, “I know you are scared and it stinks…it stinks that you feel like you are “not normal” anymore….but you are. You are stronger then ever now because you are going through something a lot of people don’t. dialysis is there to help you…it’s a scary process but your strength will lead you to success.”
Things to do while at dialysis:
Journal your experience
Try a stress relieving adult coloring book
Listen to relaxing music and meditate
Join a online support group
Author: Kelli Roseta
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All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.