History

In May 2013, I faced dialysis for a second time, but the changes to my life from renal (kidney) failure began in 2000. So the initial posts will express my experiences as a new kidney patient, cover the transplant briefly, and move on to the dialysis treatments I have undergone since May 2013.

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5 Things You Don’t Learn Until You Are in Dialysis

SURVIVAL TIP: You can research as much as you like, but until you experience dialysis, you don’t fully understand the nuances. I say this to dialysis doctors, nurses and technicians. They  agree, but they don’t realize what we need to know that they understand as part of the process. If you have questions, ask! Ask the technicians, ask the nurses or doctors, and ask fellow patients! The patients beside you have had different experiences and different staff. And they are happy to share!

Today, we’re taking a break from the past several posts that share the long journey from diagnosis in 2002 until now. I want you to know 5 things that I have learned through the course of my most recent three years on dialysis.

  1. Waiting. No matter how timely your unit runs, you will sit in the waiting room with many other people before you go into your treatment area. You might build a rapport with them, but you might feel like you don’t have – or don’t WANT to have – anything in common with the people crowded into that room. Learning to wait well is something that comes slowly to many of us. So learning to maneuver dialysis is as much a process as learning to be patient.
  2. Delays. If the person sitting in the chair you use has a medical issue on the shift before yours, your treatment will be delayed until the previous stop watchpatient’s concern can be corrected. These issues might include low blood pressure or bleeding that will not stop as quickly as normal. Occasionally, the staff can move the patient to another area but not always. Expect delays. That way you will be pleasantly surprised when you run on time and not caught off guard with interruptions.
  3. Communication break-downs. Issues beyond the staff’s control can delay start times. If the first shift is delayed, the others will be, too. (Some facilities have two shifts, while others have three.) You generally do not get a call notifying you of a delay that could be more than an hour. So never plan anything within an hour of your scheduled dialysis departure. These delays include burst water pipes and issues with “the water” in the back. I have never had the presence of mind to ask if that was the sodium bicarbonate used in the machines or some other water. I’m too irritated by the delay when I generally rush to get there on time and don’t get home until late anyway.
Did YOU KNOW? Although dialysis is prescribed for a certain amount of time, generally four hours, machine tests delay the treatment for an average of 6 to 8 minutes. So your 4-hour treatment increases to more than 4 hours and 10 minutes BEFORE you account for the time to get the technician to take you off of the machine and to stop bleeding. So the truth about your 4-hour treatment is that you must consider travel time, waiting room time, time to get on the machine, time to get off of the machine, time to stop bleeding (unless you use a catheter), and travel back home. My 4-hour treatment takes about 6 hours. If you rely on public transportation, that time commitment could increase to 8 hours or more.
  1. Bleeding. At some point, blood will seep or flow from your access. If you have never seriously cut yourself it will be a shock. It looks like you’re bleeding out. But you’re not. Apvacuum tubesply pressure and call for help. Often, the person beside you will notice and call, too. Apply pressure until someone gets there. (This bears repeating.) Just take deep breaths, look away if you must, and apply pressure. It’s a good idea to keep a change of clothes with you in case you need to go somewhere after treatment. I’ve come out with blood soaked through my shirt to my bra and on my pants. I looked as if I were stabbed a few times. The strange thing is that I didn’t lose a lot of blood. It was less than the amount required for labs. But blood makes a big mess and stains. Hydrogen peroxide (H2O2) helps to remove blood stains, but the stain transfers, so use a washcloth under the stain. Also, rinse the H2O2 soon, or it will create a hole in the fabric.
  2. Accommodating staff. If you are nice to the staff, they will try to help you. No one can work miracles, but the staff gets to know your personality and preferences. They try to accommodate you, even when helping you determine schedule changes. But don’t expect things to happen in 5 minutes. That just is not realistic unless you are cramping, your blood pressure plunges, or you have a medical emergency.

These 5 points are reality for dialysis patients, and this community is here to support you in your journey. You will be less frustrated and your care givers and loved ones will be able to support you better when you all know what to expect.

If you or someone you care about is facing dialysis, share your experiences and concerns. This is a forum for learning and inspiration where we can ask and be honest with others in the same situation. What were your experiences and challenges with dialysis?

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Patients must follow-up and be their own advocates

SURVIVAL TIP: If you feel uncomfortable asking questions and challenging a statement or diagnosis, bring someone with you who can. Your best advocate might be a friend instead of a family member who is emotionally involved. Note that advocates need not have a medical background. They simply need to be able to explain what the doctor says in layman’s terms and ask logical questions.

Although I drove myself to the hospital anticipating only an out-patient visit, I was admitted because my blood pressure surged. I picked up my phone to send a text, and I could not focus. Words and icons looked blurry. There I was─alone in the hospital─because I choose to be independent, and I couldn’t read! My blood pressure was high, and I was recovering from another surgery followed immediately by dialysis. My fear became overwhelming, but sleep defeated my anxiety. After a good night’s rest and pain medication lowered my blood pressure, I focused better. I got stronger reading glasses after I was released, and that helped. So trust me when I tell you unchecked high blood pressure can affect your vision! One experience with limited vision, and you will monitor your blood pressure regularly!

Before noon, a different nephrologist from the two I saw the day before came in to discharge me. I could go home!

When I expressed my concerns about the multitude of missteps the day before, he responded by casually telling me that I am responsible for my health. Doctors see patients only for a few minutes and work from lab reports. Therefore, patients

Doctor patient advocate

Bring someone with you who can ask for clarification.

have to advocate for themselves. So what I learned ─and want to emphasize to you─ is that we can’t trust doctors to thoroughly follow patients and make decisions. I learned that maybe I do need someone to go in and hear what the doctors and nurses say. Patients will find difficulty staying fully aware of surroundings, medications, orders and the aptitude of the professionals! I certainly did.

 

Did YOU KNOW? Most dialysis units offer early morning and late morning shifts. Only a few in each city provide a third shift. Some of those third shifts begin as early as 2 p.m. while others begin later for patients who work. Even fewer clinics offer a nocturnal, or overnight, shift.

Then the specialist grinned with good news. “We can get you right into training for home hemodialysis. Bing, bang, boom! I figured I’d be home, knocking out dialysis overnight in a few days. But he left out a number of details, such as the month-long training required every Monday through Friday about 45 minutes from my house for 4-5 hours, the room full of supplies to be maintained at home, and the plumbing requirements. In addition, someone must be with you during treatment.

Amy McCaskill, the same nurse who had trained me in PD dialysis had moved away since she trained me in PD Dialysis. Thankfully, she moved back and was the nurse who welcomed me to home hemodialysis training. She was a jewel, and she made me feel so at ease. And Amy is the poor messenger who had to share all of the details the doctor had left out. Home hemodialysis isn’t for everyone. While I knew immediately that home hemo wasn’t for me, the nurses and staff were gracious to let me go to their facility for a few days until I could get a permanent seat in an evening program at another unit. They showed sincere concern about my comfort and understanding the steps of my dialysis.

This can be a new and scary reality for many of you. Remember you are your best advocate and that step-by-step, you can get through this.

If you or someone you care about is facing dialysis, share your experiences and concerns. This is a forum for learning and inspiration where we can ask and be honest with others in the same situation. What were your experiences and challenges with dialysis?

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Plan for dialysis to interrupt your life

SURVIVAL TIP: Ask questions. If you don’t understand the answer, ask again. Ask more than one person if you need to. Interrupted sleep, the side effects of medicine, and obviously the illness can cause memory lapses or disrupted thought processes while you’re in the hospital. Write down the answers when you ask questions, as well as the source.

While in the hospital recovering from kidney failure, the nephrologist told me my kidney function was at 6%, when healthy people have about 90% function. I know what he said because Continue reading

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Bad news, fun times meet in the hospital

SURVIVAL TIP: Remember that sometimes you don’t have to visit someone or even talk to them on the phone to convey love and concern. A gift, a card, or kindness extended to a patient’s family can change the world in one day.

After I was admitted to two different hospitals within a month, the nephrologist who followed my transplant in 2007 said, “I can give you two weeks, at the most, (before we start dialysis).” This was my second emergency with failed kidneys. The local doctors didn’t want to rush dialysis. Apparently they Continue reading

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Setting expectations eases stress

SURVIVAL TIP: When you’re in the hospital, setting expectations for communication will help you rest and spare your friends and family worrying about your health and bothering you with calls.

 

 Hospitals are pretty accepting of patients carrying mobile phones. At some point in the hospital stays, I made a pact with my friends and family to send out daily texts with updates, even if it said only “More tests. Results in 2-3 days. Resting.” That way I could respond on my own time and Continue reading

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Make Plans for Thursday!

SURVIVAL TIP: A simple blood or urine test can keep you out of the dialysis chair for years.

March 10 is World Kidney Day. Get yourself tested! You can live for years with medication before having to rely on dialysis or a transplant.

Common contributors to renal failure (kidney failure) are high blood pressure and
diabetes. Be sure you have all of these indicators checked at least yearly.

Check back here to follow my journey to renal failure and beyond!

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?

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Doctor reveals difficult truth

SURVIVAL TIP: “Your pain is the passport that allows access into someone’s life.”
~ Levi Lusko

 

The Charlotte hospital experience started no differently, than the local hospital visit did. A few “hospitalists”, who contributed nothing to my care, tried to diagnose my pain. Finally one of the “hospitalists” called in my old friend, Dr. Fotiatis. The man who had sent me home with a transplanted kidney would tell me Continue reading

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