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.

Posted in Uncategorized | Leave a comment

Each unit follows different protocols

SURVIVAL TIP: When you plan to visit another dialysis clinic, call to verify seat availability. Then call your scheduling coordinator or main scheduling department. The clinic coordinator (usually the administrative assistant) will let you know if your request was approved and the time of your first appointment. The clinic coordinator generally reviews paperwork with you at the facility.

            While all clinics must follow the same state and federal laws, every unit is different. When you know more about the unit you will visit, you can mentally prepare.

Patients who visit a clinic are called transients. That me a while to accept. After all, I have a home and a permanent address. I’m not a hobo, which is what “transient” means to me. But jargon is part of dialysis, and we can’t take the terms personally.

One location used hospital beds with no sheets or pillows because they offer a nocturnal (overnight) shift. That would have been helpful to know when I packed for the trip because when I was on the nocturnal shift early in my treatment, the clinic provided sheets. Some other differences I’ve noticed are below.

  • While the printed document the clinic coordinator gives will provide an arrival time, those times are not always confirmed with the clinic. So call the clinic shortly after first shift begins on the day you are seeking treatment (or the day before if you are going to first shift) to determine your arrival time. You should arrive early for your first appointment to allow time for paperwork. My experience is that the scheduling department provides a “best guess” that might not be accurate. during that call, also ask if you should bring a pillow, blanket, headphones, etc., and if eating in the unit is permitted.
  • Clinics use a range of thermometers. Some units use digital probes with plastic covers. Others use disposable paper thermometers that reveal the temperature through colored dots. One clinic uses thermometers that read the temperature of the forehead without making contact. Some units expect patients to take their own temperatures, while other units prohibit patients from touching the thermometer.
  • I’ve had staff use gauze from individual packages and from piles of cotton squares.
  • Availability of televisions and channels vary. Most units have individual televisions for each patient, but some share a large television among several. The quality of the TVs also differs, even within the same unit. Some are larger and the buttons press easily. Others flicker and turn off or don’t work at all. My favorites are the ones that turn OFF when you are trying to turn the volume UP! In our unit, all TVs don’t get the same channels, much less the channel variety that some other clinics offer. Some facilities require patients to use headphones with televisions, but all do not. You always do well to bring something to occupy yourself, whether a book, a phone, or a tablet. While most units provide free, albeit slow, wi-fi, I am not aware of any facility that allows Netflix. Filters block “obscene” websites, as well. I was recently told that you can freely view YouTube and Hulu, but I haven’t tried either.
  • While most facilities use hospital recliners, some use hospital beds. I have heard of facilities that have heated recliners. Oh, how nice that would be!
  • Facilities start their first, second and third shifts at different times. Most run Monday, Wednesday and Friday for one group of patients. Then on Tuesday, Thursday, and Saturday for another group come in. Some nocturnal shifts run Sunday, Tuesday and Thursday. Not all units offer nocturnal shifts, just as all units do not offer Tuesday, Thursday, and Saturday dialysis or three shifts.
Did YOU KNOW:  Dialysis units promote a full life. While you can travel and still get dialysis, check with Medicare and your insurance company(s) to see if dialysis outside of your unit is covered by these plans. Most dialysis within the U.S. is covered, but dialysis abroad might not be covered.  One opportunity Fresenius promotes is Dialysis at Sea (dialysisatsea.com), but the FAQ section states that insurance does not cover dialysis while on the ship. Reimbursement might be possible, however.
  •  Units differ because the medical director for the unit or the medical practice that oversees a unit or units dictates protocols.
  • Some facilities pull two needles at once, while others pull only one at a time, citing clotting concerns.
  • Rinseback volumes (the amount of saline pushed through your access to force blood from the machines and into your body when treatment is finished) vary from clinic to clinic. At my unit, rinseback is 250 mL.
  • When determining your “pull”, or how much fluid you need to remove because you don’t make urine adequately or at all, your dialysis prescription might or might not call for rinseback. Because not all clinics use the same amounts for rinseback, your rinseback number is important when determining how much fluid you want to pull.
  • Different facilities pull varying amounts based on protocols. Some don’t allow a patient to pull more than 5 kg. Others allow 6 kg pulls. I have heard of clinics where the medical director requires the maximum rate offered by the dialysis machine. Pulling too much or too fast can lead to cramping or symptoms of low blood pressure, including passing out, difficulty breathing, and vomiting. Be aware of this when visiting another facility. Let a tech or nurse know immediately if you notice any of these symptoms, as well as unfamiliar feelings.
  • Some units allow techs to do everything but administer meds and listen to the lungs and heart while others require nurses to administer medicines, do all work with patients who have catheters and fulfill other responsibilities.

We all experience different procedures, even between techs in our own units, but understanding differences and asking what to expect is helpful in keeping your expectations reasonable while traveling. Remember, you are not alone. None of knows everything, and most people are willing to help and answer your questions.

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

Posted in dialysis, Uncategorized | Leave a comment

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?

Posted in Uncategorized | 3 Comments

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?

Posted in Uncategorized | Leave a comment

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

Posted in Uncategorized | 3 Comments

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

Posted in dialysis, kidney failure, transplant, Uncategorized | Tagged , , , | Leave a comment

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

Posted in Uncategorized | Leave a comment

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?

Posted in Uncategorized | Leave a comment