If you follow this blog, you know I pay attention, ask questions and take notes. And I pass them on to people just like me in an effort to educate and let you know you are not alone in this deviation from a “normal life”. While every
unit seems to do some things slightly different (I’ll cover that in a later post.), the basics are the same, and the challenges are similar between patients.
I developed these tips from my experience in 2007 and gave them to the nurse I worked with most closely then. In 2014, I gave it to the medical director of our unit. The nurse moved away, and I am sure the medical director threw them away because he is much more interested in looking in the mirror than wasting time with patients. He actually complained to me during his once monthly visit that he had to work on a Friday night. So I quickly replied that I am here every Friday night. Welcome to my world. Jerk. The difference is that the doctor can come any Monday, Wednesday or Friday between 4 and 7 p.m. to see everyone before we leave dialysis. Patients are there at least three hours on all of those days, along with the nurses and technicians who care for us.
So once again, here are some tips that would have helped me as a hemodialysis patient. They are pertinent to catheter, fistula and graft. I hope they help you or a loved one, too.
TIPS FOR HEMODIALYSIS PATIENTS
- If you have a fistula or graft, you will have two sticks in order to perform dialysis. This is the only discomfort you should feel. If you have a (subclavian) catheter, there is no discomfort from treatment. If you feel pain, stinging or burning with any form of dialysis, notify your nurse or technician. Although the catheter seems ideal, showering is not permitted, and it is an open pathway to the heart. So the shorter time a patient has it, the better, from an infection fighting standpoint.
- Dialysis usually takes three to four hours. This is your “prescription”, and the doctor will tell you how long you run. As you age, you might run longer or in rare cases, incrementally less time. My experience is that most people must increase their time. Then you need to allow time to get on the machine and for your blood to clot afterward unless you are on a catheter. My 4:45 p.m. “chair time” to get on dialysis by 5 p.m. requires me to leave home by 4:15, drive 25 minutes to my dialysis unit, be assessed by the nurse for healthy heart and lungs, weighing, having my temperature taken, and hoping to be ready to “run” at 5 p.m. Then after treatment, it takes about 15 minutes to “flush back” the blood that is still in the machine. Then you or a tech spend another 5-10 minutes holding the two sites to stop the bleeding where the needles were inserted before driving home. This is usually a 6-hour process, but if complications or low blood pressure prevents my leaving, it can be longer.
- You can eat or drink prior to treatment, but eating and drinking is not recommended during treatment. Most facilities post no eating signs, but my experience is that this is not enforced.
- A nurse or technician will call for you when they are ready for you to come back. They do not appreciate being inundated with patients knocking at the door, especially if they are running late. So just take a seat with the other 30 people and their drivers and be patient.
- Do not take blood pressure medicine before your morning dialysis. Dialysis will remove the medicine from your system, wasting the dose. Take the medicine after you finish dialysis. The doctor will provide directions for other medicines such as insulin. If not, ASK.
- Several hours after treatment, you may remove the gauze or adhesive bandage gently. Sometimes dampening the bandage with a wet washcloth reduces the chance of the scab coming off with the bandage, which causes bleeding. If your access bleeds, apply pressure. Then apply another adhesive bandage tightly.
- Wear old clothes because the sanitizing fluid can bleach your clothes. You might also want to wear shoes that are easy to remove.
- Bring a blanket because you might get chilled during treatment. You might also want a pillow. Some people actually bring a suitcase.
- Mobile phones and computers are permitted on the dialysis floor, and wi-fi is generally provided free of charge. You can wear headphones to watch the television at your station or bring a radio. (Note: Most units block Netflix.)
- While you rely on hemodialysis, you will need to limit your fluid intake, phosphorus and potassium as your monthly labs dictate. The recent flooding in South Carolina reminds us that sometimes weather prevents us from getting to our units, and carrying too much fluid is painful and causes difficulty breathing as well as damage to the heart.
- Do not rest your head on your access. If you do, place a pillow between your head and arm. Also, do not carry anything heavy on that arm, even a purse.
- Check your thrill every day. That is the rush or whoosh of blood moving through your access. If you don’t feel it, there could be a problem that delays dialysis. I have gone five days without dialysis. And I felt miserable.
- If your access is blocked or clogged or if your blood pressure is too low, you might be sent home to return later in the day or even the next day. For this reason, since 2013, accepting a job was difficult for me because I had so many problems with my access that I had to leave dialysis and go the next day to the access clinic or to the hospital to try to determine the problem with my access. Like all other medical establishments, they have a backlog of patients who need urgent attention. I learned that you can’t really plan anything when on dialysis. You must always have a contingency plan and hope people understand when you have to reschedule because of “a medical issue”.
If you or someone you care about is facing dialysis, please share your experiences and concerns. This is a forum for learning and inspiration. Please share your stories and questions. What were your experiences and challenges with dialysis?