“ I Don’t Know About This!”( A Renal Patients Initial Treatment Pt.2)

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“Where the Protein of knowledge never ends!”

Pt.2

“ So Mrs.AW… let us begin by first getting your standing blood pressure and we will follow by getting your sitting blood pressure!”, Okay, which arm will you place the blood pressure on?”, “ Since you have a left lower fistula, as per policy we will always place the blood pressure cuff opposite of your access arm. This is so we do not damage your access and continue to make sure it is long lasting. We have a saying in the Dialysis World,” Your access is your baby, and you must take care of your baby!”, Mrs.AW laughs , and replies shaking her head,” If you say so!” … Yeeeeeoooww!!! “Why does it squeeze sooo tight??” Me smiling,” Well either a few things are happening: your blood pressure may possibly be elevated and I can readjust the cuff. The cuff settings in the machine could be set to pediatric mode. The blood pressure cuff could be too small. The blood pressure cuff detects some type of movement… as she looked with a guilty look, ”Well, I did scratch my other arm while your head was turned!” Sorry! As I laughed ,” It’s quite alright, with all this mental, physical, and visual stimulation that is presented to us in an Outpatient Chronic Facility, it’s kinda hard to be completely still. Okay, you can now have a seat and I will take your blood pressure sitting. Mrs. AW replies,” Dwelyn, can I ask a question?” Sure…. “ What is the purpose of taking my blood pressure twice? Well as a result of being safe and following policy and procedure, here it’s beyond a standard rule. So let me paint a picture for you…. Take a look around you within this facility. We all are different. Meaning we all feel different from time to time, and it’s human nature to sometimes don’t know how we feel. With that being said, a person’s blood pressure is a Bonus of Communication when it comes to the relationship of a patient and a healthcare professional. For example, your blood pressure could be fine sitting down, but when you get up to stand up it’s a possibility you could feel weak. Really,? Explain how or give me an example!” Indeed, have you ever hung upside down when you were younger or closed your eyes and spun around real fast?” She replied ,” Yes”,,,, so tell how did it make you feel once you stood up from hanging upside down or opened your eyes from being spun around drastically ?”  “Oh my!!, I felt dizzy, weak, and slightly sick! ” “Bingo!” I replied. Hemodialysis is an emotional, physical, mental roller coaster, but as a passenger we here will do our best to conduct your Renal Journey. “Dwelyn I really appreciate your analogy!” Since we are on the subject, what was my standing and sitting blood pressure?” “Standing your blood pressure was 148/68 heart rate 92, respirations 18, sitting blood pressure 167/92 heart rate 84.” “Okay is that good or bad?” Well it depends on an individual’s definition.” What maybe good to you, maybe bad to the next person.” “How do you feel? “ Well, to be honest, I am beyond nervous!” “I seriously dreaded coming here and had my doubts. This is a major change for me.! “ I see, well I suggest just try to relax and think of happy thoughts. Speaking of your blood pressure, theoretically a professional would say you’re possibly borderline hypertension. “Hyper who?!?!” Lol, “ Sorry , hypertension is the medical term for someone who’s blood pressure is on the high side or slightly elevated. Hypotension is totally the opposite…. Remember,” Hypo means Low, and Hyper means Higher!” Get it ? That’s a little saying to tell my patients to keep it simple and it rhymes,” Hee Hee!” “ Dwelyn you’re a pure clown , but I’m glad you can make me laugh. Thank you, I’m so glad I can take this blood pressure cuff off now, whew!!! “ Well, not quite. AW replies “ Huh!!!!”, aren’t done taking it? My blood pressure is okay, you said so yourself, correct? “ Your blood pressure is fine, however your Hemodialysis treatment is for three hours and thirty minutes and unfortunately our policy is for our patients to keep the blood pressure cuff on throughout the whole treatment. Mrs AW gives a blank stare and replies,”Wooooo!! Three Hours and Thirty Minutes????“ My!!! Why so long? What’s being done in that long time? “Man!”” “ I apologize, but those are the Physicians documented orders for you to spend on the Dialysis Machine. “Where’s he at?“ Who Mrs .AW?” The Doctor”!! I have to tell him that it’s too long for me to sit here, I have to be picked up by my family from here today. “Ah I see, we will definitely contact your family to let them know what time for them to pick you up. “Okay good!”, I replied,” As for the Doctor, he will not be in here today!” What???? “ where is he? On vacation, playing golf?” “I need to speak to him”! “ Once again I apologize , but as a Renal Physician, sometimes,…… seemingly all the time, they have an overwhelming ratio of patients to take care of and tend too and it’s unfortunate that he cannot be here on a daily basis, however he does make rounds weekly.!” “Ah man, well I guess I will not see him then!”  “Why do you say that?” Mrs AW replies, “ Well after I finish the, three hours and thirty minutes you all will clean me out and get my kidneys back to working!” …and I walked in the door here forty five minutes ago so technically I only have about two hours and forty five minutes, give or take left with my treatment process……Right?” With a look of sadness and despair, I replied ”Mrs. AW, I’m very sorry but to my knowledge you are considered ESRD in which that means you’re in End Stage Renal Disease. Your current stage of Renal Failure, which also means Kidney Failure defines that per your Renal Physicians order, you will have to visit us every Monday, Wednesday, Friday for three hours and thirty minutes each time.” “I will get my Charge Registered Nurse to come and do your assessment and also talk to you as well, please excuse me for a brief few minutes….. As I walked away, Mrs AW put her head down as if her world was shattered and no sense of hope. And from a far I could literally see a sparkling teardrop from her face as it hit the floor.

To be continued…..

What I do may today may affect generations to come.

It was not long after I started that my family and I were having a difficult time with the new changes in our lives. You see not only did kidney disease effected me but it effected my family, friends, co-workers, and even those that I was around on a day to day basis.

My mom was having a hard time on knowing what I could and could not eat. Yes, she talked to the renal dietician that was in my clinic, and did the best she could yet it was still difficult for her. She was used to fixing southern fried chicken, macaroni and cheese, mashed potato’s and gravy and then to top it all off either a huckleberry pie or a blueberry one and you can’t forget the ice cream. Dad did what he could but I could tell it really bothered him and he even said son I wish I knew what to do all I can say is I am here for you if you need me, and if I could take this away I would. There was my sister. I remember one time that I was in the hospital, my sister was with some of our friends and they were playing volleyball but it had affected her so much that she could not even play she just sat on the side lines and cried because her brother could not be there and have fun

Out of my family, my mom seemed to have the hardest time with the news that her son had to go to dialysis. Many times I would walk past my parents bedroom and the door would be closed and I could hear her crying asking for some way some how for her son for the kidneys to come back or we find a transplant quick. But then something changed, my mom owns a alteration shop (one that repairs or alters clothes) and one day a customer came in to pick up some clothes that she had left for my mom to fix. During this time my mom ended up saying that I was on dialysis and that we were all having a hard time especially with the food. This individual said that she was sorry that we had to face this but maybe she could give us some ideas on what to cook. You see she was a renal dietician that had worked in dialysis previously. I don’t know much about the rest of the conversation but I can tell you after the customer had left my mom ran up the stairs. She was excited, no, she was ecstatic, for this person had not only given her ideas but more importantly hope and encouragement. The burden that she carried was so much lighter. That day was one of those days that Jim Rohn said……

The Day That Turns Your Life Around.

Jim Rohn

What a positive effect this person made not only on my life but also my world. We each have a great responsibility to affect this world. To that individual that did this I thank you from the bottom of my heart you surely affected generations to come. Now I want to ask a question of all of us. When we lay our head on the pillow each night, what kind of affect did we make? Was it a positive one or a negative one? It is our choice. Keep tuned in. As next week I will be talking about some others that have affected my life in a positive way.

“ I Don’t Know About This “( A Renal Patients Initial Treatment)

“Follow us on the Kidney Trails where the Protein of knowledge never ends!” 

It’s Monday morning, we had a teammate call out this morning. Not to mention that this is the first Monday after Thanksgiving. Luckily in my pod I only have three patients instead of four. We have a patient that’s absent today. You see, as a Nephrology Clinical Technician( Dialysis Technician) this helps in more ways than one. It gives me time to take a breather, collect my thoughts, and fortify. Indeed I am not celebrating that I have an absent patient. I’m full of joy because my absent patient for my second shift got a call last night for a Kidney Transplant. So it’s safe to say I am celebrating that he isn’t here. Respectfully. So in his place in my pod, I have a brand new patient coming today whom this will be her first dialysis treatment. Good thing is I can take my time with her, explain our way of doing her treatment and provide the utmost care for her as well as all of our patients. Her name is A.W, African American female age 47, Type 2 Diabetes, history of hypertension, newly matured left lower fistula access. Her appointment time is 09:15, so luckily I have forty five minutes until my next patient appointment for dialysis. Now keep in mind forty five minutes in the Hemodialysis world means you technically have only twenty five minutes. We are always racing against the clock. I approach the lobby waiting area and I see her in the far right chair in the corner. I walk up to introduce myself to her by saying, “ Good morning Mrs.W, my name is Dwelyn Williams and I am a Hemodialysis Technician that will assist with your hemodialysis treatment today”!.. she pauses and says” Hi”.. I replied, “ Everything will be just fine and we will get through this, together”. “Now, if you don’t mind may I ask you a few questions concerning the issues revolves around the pandemic of COVID-19/ Coronavirus that we are experiencing and I will need to take your temperature.” She replied , ”Ok”!. “ “Do you have any SOB, muscle weakness, dizziness, nausea, vomiting, signs of a fever, been around anyone experiencing symptoms of the coronavirus, headaches, loss of appetite, etc.?” She replied with a blank stare “ No but why did you call me an SOB? “  As I laughed , I do apologize the acronym SOB means Shortness Of Breath. She says “ Ohhhh”! With slight embarrassment but mild giggle. After I took her temperature with a perfect 97.6 reading orally. I gave her the mask that’s required and guided her through the doors of the treatment floor making our way to the weight scale, sometimes there are things that we have to avoid so it is best that I assist her to the scale. The look on her face, well being that during this time of the pandemic we all are wearing a mask and are left with the only option of just reading someone’s expression through their eyes. And let me tell you, A.W eyes defined a Deer in Headlights. So after we obtained Mrs.W weight, it read 76.5 and her eyes got even bigger. She was startled. She said I have lost so much weight since the hospital. I used to weigh more than this…” I Don’t Know About This”,. So I asked, “ How much weight did you lose?”. She said” A lot!! “ I used to weigh at least 100 pounds and this Dialysis is shrinking me. As I snickered a bit well to inform you, we here at our clinic  follow a standard of weighing our patients in kilograms instead of pounds. So with that being said, 76.5 is your weight in kilograms. Would you like to know your weight in pounds? She says,” Ohhhh, sure , uh I guess , I don’t know! I replied as I whispered in her ear,” Your weight is 168.3 pounds.” She says” Ahhhh, I feel better now!” “ But did you know that?” “We as professionals in the clinic setting convert kilograms to pounds by using the method of multiplying by 2.2 to determine a patient’s weight in pounds, and division of 2.2 to determine a patient’s weight in kilograms. She says , “ Oh my, You all have to do all that?” Yes ma’am indeed we do. “ Mrs. W let’s walk to your dialysis chair where you will be sitting for the remainder of your treatment. You’re in station number seven. My section is labeled Jamaica. As she looked around our facility of twenty four stations , people talking, laughing, sleeping, tv’s playing, machines beeping, computers, supplies of big boxes, people walking extremely fast , everyone wearing masks, people staring, wheelchairs, hoyer lifts, phones ringing, etc….. She stares at her chair with the number seven and the title Jamaica Pod above it and she suddenly seems concerned but yet more relaxed. ” Mrs. W, are you okay?” She says,” Yes, it’s just that….. Well my lucky number is seven and my father was from Spanish Town, Jamaica. This clinic just took me back to days remembering my father. Even though this is my first dialysis treatment in an outpatient facility , I think I will be okay. Despite all that’s going on, I do admire how this clinic has stimulating decorations and seems kinda fun here…. I guess!” “ Mrs.W, our Team decided a few months back if we decorate each of our six pods in reference to travel destinations or a place of somewhat peace to dialyze our patients in, it may make them feel more at home. Our goal here in Phoenix is to make you feel at home no matter where you are from. Welcome home.

To Be Continued………Tune in every Sunday to see what happens next to A.W.

Dwelyn Williams

CCHT, Immediate Past President NANT

Fresenius Kidney Care-Arcadia

Alex’s Story

Hey folks, My name is Alex Berrios. I was diagnosed with Kidney disease at the age of 26. I am a one-time kidney transplant recipient. It lasted for 13 years. When first diagnosed I did in-center hemodialysis for about 18 months. I crashed into the disease and had no idea what to expect. It was a life changing experience and little did I know that this disease would change the trajectory of my life and show me what my true purpose is.

 When I started hemo-dialysis in April of 2006 to starting it back up again in July of 2020 there really had been some changes. The biggest change is currently we are now in the midst of a pandemic called Covid-19. Each visit at the center we get a temperature check and ask if we have any symptoms of Covid-19 ( cough, fever, diarrhea).  If we pass those we go and get our weigh in and then to our seat where they get our standing blood pressure and then a sitting blood pressure reading. The nurse then sets up the machine and makes sure the numbers entered match my doctor’s orders. 

I feel dialysis in both Hemodialysis and Perinatal Dialysis both have their advantages and disadvantages for the patients. Some patients might feel it’s easier for the nurses to take care of them and do all the work but the disadvantage is you lose some freedom to be able to work or be with friends or family.  With PD an advantage a patient has is that they can set their own schedule with their time on the machine and when they need to drain the fluid bags.  A disadvantage with PD is you can’t swim out in public pools, hot tubs, streams, or lakes.

One key component for successful dialysis is for the patients voice to be heard and to be a more patient centric experience. When nephrologists and surgeons work hand in hand with the patient, and vice versa from the beginning of the patient’s diagnosis all the way, until dialysis starts or they have an opportunity for transplant wonderful things happen for both patients and physicians. 

If innovation in dialysis care is continually brought up with the patient’s voice in mind great innovations will happen. As a patient I really hope there is an opportunity for implementation of programs to help patients like myself not feel alone while they go along this journey.

Alex Berrios Master Kidney Coach/ Patient Advocate

Kidney Trail Guest Author

The view from the dialysis chair.

So what is it like to be a dialysis patient? There were many experiences that I had and I will share some of these with you in future but in this blog post I want to share with you what it was like to be in the chair. Last week I talked about learning the lesson the first time, and because I refused to learn the lesson. Life signed me up for class and had a dialysis chair ready for me.

As I would sit in the chair it would be for a 3 hour and 45 minute treatment. Now I could move a little such as readjusting my position or try to get a little bit more comfortable but it would be carefully for if I moved to much, it would make my machine alarm and my treatment could possibly be longer. It it is best to stay for the whole treatment and try not to ask to get off any earlier. The only time I would ask to get off is if I had to go to the restroom and then I would come back to finish my treatment. More often than not I had good treatments but when I went to treatment I would make sure to pack some essential things for the journey.

Some of the things that I would take would be things such as my phone, headphones, phone charger and maybe a book. I will say right here that a book such as Michal Crossland’s book can be a huge help for those that need inspiration and motivation on their journey. Listening to music or reading a motivational book was one way to pass the time. Many times a song that I would be listening to would touch me in way like never before or I would read a book and something that was written in it would touch me to the very core. You see it felt as though I was all alone on the journey even though there were many around me, and during these times is when these things were the most helpful. Talking to the other patients would help as well for they would share their experiences and we would encourage each other and talk about different things including our families, what we did the day before and even our all time favorite subject which was was the food we could not eat. Like pizza, hot dogs, baloney sandwich’s with potato chips (Sorry Carol and to all the renal dieticians) and so on. All kidding aside those conversations would help us on the journey.

Other than music, reading or talking to patients, talking to the care team would help as well. Not only would we talk but there was times that we would joke around, sing songs and even talk about what I should eat as a dialysis patient. This is so important, and can help the patients in so many ways. It was times like these that made the treatment go quicker and gave me hope to continue on. Not only did the support come from the clinic but also came from someone I did not even know at the time. Be sure to stay tuned for the next blog coming up “What I do today may affect generations to come” to read about this next exciting experience.

Sea Shell Treasures

Sometimes your voyage may take you out of the mountains and into the “low country”.  There is beauty in both.  One of my favorite things to do is walk on the beach and look for seashells.  I could do this for hours!  One summer while walking on the beach, I started thinking about how our lives are similar to that of a seashell.   I kept searching, thinking and pondering on this.  I picked up enough shells for each of my patients at dialysis and wrote this poem to give each of them when I returned from vacation.   No matter where you are in your journey you may be able to relate as well. 

Sea Shell Treasures

Your path to this place in life was not easy.

You came from all walks of life, depths of the sea.

You are different colors, shapes, and sizes. 

You have experienced low and high tides.

You have been weathered, torn, chipped, and broken.

You are not perfect, but you are unique.

You have experienced that washed out feeling; to shore, then back out again. 

You were tossed about in the force of the storm, sometimes buried in sand for a while, only to resurface again.

You have been at the mercy of “life” through calm and rough waters.

You landed here where I found you, amongst many others, all with similar but different 

stories to tell.

You are here for a purpose, one way or another. We are on this journey together. I’m glad we met.

May this shell be a reminder that… 

Someone picked you up, cared for you, and carefully transported you here.

Someone thought you were worth it. 

Someone thought about you. 

Someone believes in you. 

Someone sees that you have value. 

You add joy to people’s lives. 

You are treasured.

Carol Jones, MS, RDN, CSR
Registered Dietitian
Certified Specialist in Renal Nutrition

In Center-Hemodialysis

As I awoke that Monday morning, it hit me it was time to get ready to go to the dialysis center to have my treatment. Now when I left the hospital there was much information given but very little of it retained. There was too much information given at one time and with all that was going on in my life I could not retain it all. Think of it. Your told your kidneys have failed, you need to go on dialysis. Now there is a few different types of dialysis in-center, home hemo dialysis, peritoneal dialsysis, and transplant but with all the info that was given, it was hard to retain it. My dad drove me and we walked into the clinic, sat down, and waited to be called back. There were many thoughts running through my mind, and my dad could see the nervousness on my face. We made small talk about different things, and this helped take my mind off what was ahead. When the nurse came to take me back, she let my dad know that once I was hooked up to the machine, she would have him come back to see the treatment floor. This helps both the patient, and the support person to understand the processes of what dialysis is. As I walked back to the treatment area with the nurse, I felt like a little kid leaving their parents to go to school for the first time. As long as I have the capability to remember, it will be impossible to forget that walk down the hallway. I could hear the beeping of the machines , people talking back and forth, nurses running here and there doing their job. As we came to the end of the hallway, I saw my first in-center dialysis area. There were many takeaways from that experience. The main takeaway was this: this is my life now and it may not change. As I started my first treatment In center that day, it was like a blur. It went very quickly. Many things were happening. All the different care team members that were there introduced themselves from the dialysis tech to the doctor. By the end of that treatment I was tired, but physically I felt better. Over the next few months, I felt a little better after each treatment. It took some time, but I started to feel more like myself. In the next blog I will be showing you the view from the Chair.

Time to Travel

After a few days of being in the hospital with the dialysis treatments going well, it was time to be discharged. I would next go to an in-center hemodialysis clinic on an outpatient basis. I would imagine that most people after being in the hospital are excited to go home. This surely was the case for me. I had longed to sleep in my own bed, be with my family and friends, and just rest. The Nephrologist was able to secure a spot for me at an in-center dialysis clinic. Usually when it comes to getting a dialysis slot, you receive what is open and then hopefully in the future you can schedule a time that works better for you. The schedule for an in-center dialysis patient is generally three days a week for four hours each treatment. When beginning dialysis in the acute setting, they will start with a two hour treatment and then work the patient up to a 4 hour treatment. I believe they had worked up to only a 3 hour session with me. With this appointment in place for the in-center dialysis treatment, I was discharged and sent home. I would start my first in-center treatment on the following Monday. Over the weekend I was able to sleep in my own bed and just be home. What a relief this was, though I had treatment the coming Monday. It was good to be home. Going to my first in-center treatment is the next part of the journey. What I experienced that day was something that would change my life and set my feet on a different path.

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A friend in time of need.

When I first found out that I had end stage renal disease, and knew that I was going to have to go on dialysis, I started to let my friends know. During my time in the hospital, many of my friends would text or call to see how I was doing. But there is one story in particular that comes to mind. Throughout my hospital stay, my family came to visit and sit with me for a while. This truly helped me because I needed the encouragement. But one day a special friend came to visit, I was in the process of doing a treatment when he arrived. He went to my hospital room, but was told that I was doing dialysis in the acute dialysis center in another part of the hospital. He inquired where that was located and they gave him the dialysis room number so he could visit me there. When he appeared around the doorway I was so excited that he had come. We talked for a little bit, and he encouraged me to be strong, and during our conversation at one point he turned his head away from me, and I saw a tear come down his eye. He tried to hide it and I pretended not to notice. But I did and it touched me down to my very core.
You see he had come expecting to see me in my room, but instead he found me hooked to a machine that was saving my life and it had an affected him. What an example this friend was to me he taught me a valuable lesson that day and this is what it is. A true friend is one that is there in your time of need to encourage you and lift you up when you are feeling down and sometimes just to listen. They stick with you through the good times and bad times. How valuable friends like these are don’t take them for granted. What about us can we be that friend to others that are around us? Yes we can and when we are we get a more fulfillment out of life. In the next blog post it will be time for me to leave the hospital and go home.

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The First Treatment

Once at the hospital things went fast. I was admitted to the ER once again so they could get my chest catheter in and start me as an acute patient. When the nephrologist began to go over things with me, there was so much information given that I was overloaded and couldn’t take it all in. Information about dialysis. Details about why my kidneys had failed. Info on what I could expect over the next couple of days. Then he described the various kinds of dialysis and other treatments that were available. It was a ton of information and I wasn’t able to retain it all at the time. They admitted me to the hospital and I found myself all alone. There is a song that says, “Once I stood in the night with my head bowed low.” This was truly how it felt. I tried to sing, but there was no song. I tried to remember the positive things, but they seemed to disappear. What would happen next? Would I make it through the surgery the following day? How was life going to be after that? There were so many unknowns and there was no turning back. The only other option would be to leave the hospital. But my kidney disease was so severe that I would probably not survive the next week. That night was so long. Morning seemed so very far away, but morning did come. That morning my surgery was scheduled to place the catheter. By afternoon I went into surgery. When I awoke, I was beside a strange machine. It was taking the blood out of my body, running it through a filter and then returning it back to me. A nurse was by my side taking care of me. My first treatment ended not long after waking up and so did that day. The first day of dialysis was complete and as my day ended a new life was beginning.