Almost everyone that went to dialysis most had a bag. Backpacks, duffle bags, tote bags, suitcases, yes I said suitcases you would be surprised what one would bring. When I started dialysis I received the same care package as everyone else: A medium tote bag, a blanket and a set of headphones. After a few short months of being on dialysis, I realized that the bag that was given was great, but it was not big enough to hold everything that I carried. I found this out when I tried to stuff a queen size comforter in the bag. I managed to pack it nice and neat but when I went to leave one of my nurses, Spunky tried to put it back in the best she could, but it didn’t quite fit, and the zipper broke whoops. So I went to the store and bought a decent size duffle bag that would hold all of my things, So what did I put in my bag and why did I need all of these things.
Blankets- Other than the queen size comfort I usually took either two thin blankets. The reason for this is that it can get cold in dialysis due to the dialysis machine taking the blood out of your body and returning it back to you after it has been cleaned. If you want to know a little more in depth of the process check out, Dwelyn Williams Story “I Don’t know about this. A renal Patient’s initial treatment.” It is a great read, and he shares a more in depth of how dialysis works. So blankets were a must, I thought about taking an electric blanket, but this is highly frowned upon by the fire Marshall, so that is not a good idea.
Headphones and phone charger- these two things were essential as I was on my phone quite a bit listing to music, audiobooks, motivational speeches and so on, and being on dialysis for 3 hours and 45 minutes my phone would die, so I would find a long changer for my phone, so it could reach to my chair, and then I would not have to worry about my phone dying during my treatment. Trust me, a treatment without headphones and a charger was misery.
Art Supplies- Another thing that I brought with me was some art supplies. Things such as drawing pencils, colored pencils, pastels, eraser, a pencil sharpener and sketchbook. During treatment, I would spend a lot of time drawing and coloring. In fact, I have several drawing books that I filled up during dialysis.
Books- On occasion I would take a book such as a comic book other times a self-help book or even school books. While on dialysis I went to school online, and I would take my books and laptop so that I could work on school.
Snacks- pre-COVID days my clinic allowed me to bring snacks into which I took advantage of this. Now snacks generally consisted of a protein bar and Skinny Pop ( A low sodium popcorn). I remember one time that I brought in my snack and my chair partner brought his as well, and we started to compare. He had a honeybun and I had a protein bar, and then we looked at the nutritional value. Well to our surprise the Honey Bun had more protein than my protein bar!! So much for trying to be more healthy. LOL
There were a few things I tried to take in, but they ended up in failure. Let’s see,
a 66 key keyboard is not a great idea to try to take. It was too big and plus playing with one hand is ok, but it is not the same. Handheld video game. When I had my catheter I was able to play a hand held video game, but after they started to use my fistula well once again one hand was pretty difficult.
So I have a question for you. If you are on dialysis or have been on dialysis what do you have or what did you have in your bag. If you have never been on dialysis what would you take in your bag?
Well until next time keep encouraged along the journey, for you are one step closer to the next peak.
Oh, AW, that’s Nicole. She’s a new Technician in training. I totally forgot she was supposed to shadow me today. I was supposed to show her our clinic, meet our patients , and basically give her a rundown of how we do things here. AW replies,” So, Dwelyn you all train people here? Who trains them, and what does the training consist of? I’m glad you asked that. I reply, Before we have any new hire come out to the treatment floor, we try our best to train all of our new hires thoroughly. I myself help with our Education Department to help train new hired Dialysis Technicians. My role is an Ambassador for our Region, and I’m a Preceptor for our clinic. “ Wow Dwelyn!” What does an Ambassador do and Perception ?”,What is that? “ Well as an Ambassador , I’m mainly here for guidance and moral support. Sort of like a liaison to individuals in need. For example, this type of profession requires a lot of guidance and coaching. Each team member that’s hired, is placed with a Preceptor/ Trainer who shows them the ropes of their clinic or the way a common dialysis treatment floor is run. Just think about it AW, when anyone starts a new job, especially within a healthcare setting they’re nervous and scared. My job is to play Devil’s Advocate and provide a non-biased opinion while providing undivided attention towards their needs of venting or coping with this job. “ Sheesh Man , that sounds steady!” AW replies. “ Lol , well it probably does , but with my years of experience I’ve learned to get a hold of it in a manner to project onto others positively. And I’m still learning also. Remember we talked about CVC / Graft / Fistula care ?
It was 1986, when my sister started dating her future husband, Rob, nobody would ever have imagined that in 22 years. Me, the “little sister” of his girlfriend, a 10 year old, fairly obnoxious child would have the opportunity to change his life. Their story is the classic high school sweetheart. Having 2 younger siblings himself, he was used to my brand of annoying. But he was always nice to me and I didn’t seem to get on his nerves and if I did he hid it well.
In 2005 he was diagnosed with systemic Lupus. Looking back, we noticed all the signs but hindsight is 20/20. Once diagnosed, everything seemed to go downhill fast.
Over the next few years there were flare ups, changing meds, and learning life with an autoimmune disease. Every flare up seemed to go right to his kidneys. Fast forward to one particular phone call I’ll never forget. My sister called me stating the Doctor told them he would more than likely need a kidney transplant in the next 3-5 years. Instantly I knew it was going to be me. It wasn’t a “yay, I’m going to do this!!”,but it was as if I would say “I’m going to make dinner”…..”I’m going to give him my kidney”. I had no clue the in’s or out’s, no clue what was needed to even match, it didn’t matter, because I was going to be his donor.
One year later, not 3-5 as expected, the process started. His kidneys were failing and I was put in touch with a transplant donor coordinator at a local transplant center. I was anxious to get this started, so he would not have to go on dialysis. Blood typing was first thing. He had to have an O donor, and I was O+. Then started a series of tests, instead of getting them all done at one time it was like 1 a month. This part of the process was more of a “hurry up and wait” kind of situation. In all, it was almost exactly a year from start to finish. There were a few hiccups. The first was learning my kidneys were a little “extra”. These showed up on the CT scan. Each had 2 arteries, rather than the 1. This meant the surgeons had to hook up 2 arteries in Rob as well. They said if there are more than 2 arteries one each kidney, I’m out as a donor. So they had to schedule an arteriogram. Many many years ago arteriograms were standard in screening potential kidney donors. But as CT scans became more advanced, they no longer needed to be done. The surgeon didn’t want any surprises (like a 3rd artery) when he went in, so an arteriogram was necessary to confirm I wasn’t “well endowed” in the artery department. I was very nervous about this procedure because I’m a big baby, and did not want it to hurt – I wanted to be put to sleep but they wouldn’t do it. I did get some really nice gas though, and decided cracking jokes was a good idea. I cracked myself up! But a little bit into it, the Dr. said “Ms. Morrissette, I’m glad you’re having a good time, but we need to stop laughing because when you do, it moves the artery”. I had to lay flat and still in recovery for 5-8 hours after to make sure the artery clotted and the clot stayed put. That was Feb 13, and we had surgery March 20. This was 2008, so there was no social media, Facebook, Instagram or even smart phones. I was desperate for information, I wanted to know what to expect. Even though I felt confident in this happening, I wasn’t scared, but nervous of the unknown. Out of curiosity, I even read up on the history of transplants and how they all started. It is fascinating and it made me very grateful for the progress that has been made in only a few short years.
The morning of surgery, I arrived and my husband and I got settled in to preop. I was anxious to see my sister and Rob before surgery, hug him, pick on him, you know, little sister stuff. I asked our nurse and she said she didn’t see them. I got nervous. Rob is infamously late to everything. I thought to myself ‘so help me, he better not be late for this!” later on I learned, he was scheduled at a later time b/c they had to get it out of me first. Every so often someone would check in on us, to make sure I was doing ok. I was asked if I needed anything for my nerves. This puzzled me for I wasn’t nervous. Excited was more like it, excited that the day finally arrived and we could move on! Because I was lucid and unmedicated, there was no need to wheel me into the OR, I walked in, with the anesthesiologist holding my IV bag and asking me questions about his eyeglasses LOL The OR team was surprised to see me walking in and not anxious or medicated. So they took the opportunity to give me a tour of the OR room, the instruments, etc. I was very surprised at how small the OR table was and laughed “you want me to get on that little thing!?”
As I got on the table I made sure to have positive thoughts as I was put under – I thought about the beach, my happy place. When I woke up I felt like my whole abdomen was on fire. I remember not being able to talk, and barely could open my eyes. I remember moving my head back and forth and crying. Someone handed me the pain pump thing and said squeeze. Then I was out. Next thing I know I woke up in my hospital room, and was more lucid than before. Of course nurses wanted me up and walking. I was cranky, miserable and I had a catheter, and a drain tube coming out of my abdomen. I thought for sure, if I stood up, those things would fall out and surely that would hurt! I begged them to leave me alone until tomorrow when the catheter could come out. Of course, I asked about Rob, and everyone was thrilled at how well he was doing and the kidney pinked up and started working before they sewed (stapled) him up. Such a relief! The catheter was a strange thing and I hated that I was glad to have it. I surely would have struggled to get to the bathroom. But my reflexes and brain could not “just pee” when needed. I’d wake up with a very full bladder and I had to literally close my eyes, imagine I was sitting on a toilet, while telling myself, I will not pee the bed, it’s ok, I will not pee the bed. But it sure felt like I was going to. I was not prepared for the complete loss of my core. They took the left kidney (their preference) via laparoscopy. Then they made a “track” from where it was, and then pulled it down to an incision similarly located where a C-section scar would be. It didn’t dawn on me the disruption it would cause to my trunk. I did get up the next day, as promised. They took the catheter out, and I was instantly feeling better. First things first, to go see Rob. He was down the hall from me. It was so wonderful seeing him! We visited for a bit but neither of us lasted long. I remember his mom and sister coming to my room and hugging me, they were crying. They were very sweet and grateful. I vaguely remember other visits from family and friends but it was kind of a blur. The first day I was off the pain pump and on oral meds, my pain got out of control. Because I had never had any surgeries prior to this, I had nothing to compare it to. But boy did I feel like something was very very wrong. I was crying, nauseous, dizzy and I was convinced they left something in me and because of that I became hysterical. On his rounds the surgeon asked when my last pain pill was. I told him it had been the night before. But I told him it wasn’t that. I wasn’t in traditional pain. But I took one anyway, to appease him and he was right. I guess he had done this a time or two. The nurses didn’t wake me up to take my pain meds and I didn’t know they were supposed to. So from then on, I set a pain pill alarm (remember, pre smartphone, so brought a physical travel clock) every 4 hours. I was rather irritated that the ball got dropped on something that important. I lost an entire day trying to recover from that episode. Anytime I talk to potential donors, I tell them that. I went home after a couple days, Rob had to stay longer. I slept so good at home that I missed my pain pill alarm. I got off track with them again, and had that whole nauseous, dizzy, crying episode again. I Lost another day recovering from that one too. That time, I gave my husband the pain pill alarm so he could wake me up. One thing I did miss was the hospital bed. Because I had no core, I would set the head of the bed all the way up so all I had to do was swing my legs down to get up. I didn’t have that at home. I did go through a very short period of “what did I do to myself?” and felt guilty for putting my body through that. I remember reading about that from other donors. It didn’t last long and I never once regretted it. We’re 13 years in now, and it seems like a thing of the past. I’m sure it’s not the same for Rob, but I often forget about it. I am grateful he gets copies of sonograms of the kidney to share with me. And I’m grateful he lets us poke fun at him having a girl part inside of him. I’ll never forget the first text he ever sent me “yo dawg, heard you got a new car, love kidney”. It was so sweet, and funny! It made me tear up.
One last repercussion I do have is my asthma has been harder to control since surgery. I was very short of breath. They checked for blood clots and all was fine. They chalked it up to possibly having some scarring from the breathing tube AND being a smoker prior to surgery. I quit the day I had the arteriogram so it was only a month difference. And who knows, I could have had the same thing happen after quitting smoking and not having surgery. But I tell myself “I can’t start smoking again, because I can’t donate another kidney to make me quit”. It seems to me, ever since donation, his flare ups have significantly decreased and everything is chugging along nicely. I’m honored, humbled, and grateful I was able to be his donor. It’s a special relationship that I get to share with him and on that I will cherish the rest of my life.
Potassium is a mineral and an electrolyte. It helps your muscles work, including the muscles that control your heartbeat and breathing. Potassium comes from the food you eat. Your body uses the potassium it needs. The extra potassium that your body does not need is removed from your blood by your kidneys.
On July 8th of 2019, I went into emergency kidney failure, my potassium had reached a score of 9! I was just moments form death and because of my kidney failure my body could not expel the toxins such as potassium and so my body retained these poisons and I was in a very critical state. I was suffering with Hyperkalemia, a very dangerous condition that can affect your heart and in which it did on this very day.
I went into a heart arrhythmia (irregular, fast or fluttering heartbeat) my heart was literally beating out of my chest as if I was running a marathon and it was in a very strange rhythm. The ER doctor immediately looked concerned as I entered from the helicopter ride, he said, “You better grab the crash cart!” as I passed out. I woke up 3 days later on a dialysis machine in the ICU, unknowingly that they had already pulled off 30 lbs. of fluid and saved my life! The staff was amazed that I had lived through this and the Nephrologist said I was just moments from death!
I have shared this with you to let you know the importance of taking care of your kidneys and to be aware of your potassium levels. I was able to maintain my potassium and manage it by following the renal diet and abstaining from high potassium foods, such as bananas, oranges, tomatoes, dairy products, beans and potatoes just to name a few. I also never missed a dialysis treatment, missing dialysis can cause the toxins (such as potassium) and fluid to build up in the body and so it is crucial that you attend every treatment and stay for the entirety of each session. Potassium is definitely an important factor with kidney patients and some patients also have low potassium so they have to learn how to manage it by eating some foods with potassium but to be careful at the same time to not over indulge.
I also incorporated an exercise regimen and I cannot stress enough the importance of following the renal diet and exercise especially being a kidney patient. I also want to encourage you to be mindful of your potassium and the effects of high potassium, because of my near-death experience with kidney disease, potassium became a real factor in my life. I always try to keep in mind when making food choices that I need to make smart decisions. I’m now a kidney transplant recipient (8/11/20) and I would never want anyone to experience what I went through with kidney disease & potassium so this is why I share my personal story with you.
I hope that you will read this and be encourage to manage and be aware of potassium in your diet and to consult with a renal dietitian if you have questions or concerns. I definitely appreciate the AAKP for what they are doing for the kidney community with the Areyouok5.1 program for National High Potassium Awareness Day on May 1st.
Good times in dialysis is that even possible? As I was thinking about a title for this blog I had to laugh a little because this was a question that someone asked, and I thought to myself If they only knew I mean you have heard the saying “What goes on at dialysis stays at dialysis”. Well here are a few good experiences and other fun times I had when I was a dialysis patient.
One of the things you quickly realize when you are an in-center dialysis patient, is that there are people from many places, with many experiences in life. It’s also interesting that one thing has brought you to this place ESRD (End-Stage-Renal-Disease) and as you look around the room there are others that have brought here because of this very thing. I had many seatmates through my time and overtime they became as family. We cared about each other, I can still hear some of them asking what did you have for supper last night and the next thing you know everyone in your pod is discussing all the food they ate and by the time you finished talking about supper the hunger pains hits, and you realize there is still one hour left. Of course the food conversation may start out innocent, meaning we would talk about what we were supposed to eat, but it would not be long, and we would all start to talk about pizza,cheese,chocolate,hotdogs,spam and so on. Of course if the renal dietician came on the floor we would change the subject as quickly as we could. I am sure when she looked at us, we looked like the 2-year-old that got caught with their hand in the cookie jar. Other times I would hear stories of the good ol days. Stories about their childhood and memories, the times that were special, the people they loved such as their family and friends.
Roller Chair Derby
There was one day that I was sitting in the chair, and it was a pretty uneventful morning. The Treatment was going great. In fact, it was pretty quiet. Side Note:( There is one word you don’t say when you are in treatment that is quiet. Any time someone would say that it would get crazy.) The next thing I know there were two of the staff members laughing and talking and one of them challenged the other in a race around the room. They grabbed the roller stools and pulled up to the starting line which was my chair. 3, 2 ,1 go and there they went around the room faster than a speeding bullet. Actually now that I think of it was more like watching 2 turtles race. I can’t remember who won, but it made our day, one that I will remember for a long time.
pre-COVID one of the things that was a real treat to the dialysis patients was a cup of Ice. Now you may not think that Ice is a big deal but to those that have been or are on dialysis it can be a big deal, and one that made treatment days a little better. During the holidays such as the fourth of July, Memorial Day and so forth we would have special ice. Generally Red, blue or plain ice. Which was basically snow cone syrup and there were two flavors: cherry and blue raspberry. I would enjoy this treat during these times but after the holidays we would go back to plain ice boring. Some other patients and I came up with a great idea and that was to buy the snow cone syrup and just leave it at the clinic for all to enjoy year round. Patients would look forward to it and would start to bring in more flavors before you knew it we had 3 or 4 flavors to choose from. One day I was not feeling well was sick with the flu and as soon as I walked in the staff knew right away that I was sick. Once I got on Aunt B said she was sorry that I was not feeling well and was there anything else that she could to help out. My reply was a cup of flavored ice because it would make the day better, and it did even when I had to go to the ER to get checked out. I still was thinking about that Ice.
Though these seem like small things it made a huge impact on not only my life but also others it helped make the day go by faster and gave me memories that will last a lifetime. Remember this the smallest things can have the greatest impact.
Even though this is the end of part one I am sure there will be more to come. So why dont you Subscribe so you dont miss any new and exciting content. The journey may be long but stay encouraged along your journey, you are one step closer to the next peak.
I looked to my left and see Anthony finishing up talking to AW , and beside me Ashley is wiping down her machine to prepare for her next patient. I’m discontinuing Mr. Johnson’s treatment. As I noticed his CVC (Central venous catheter) / RIJ( Right Inter jugular) access dressing fell off, I quickly wash my hands, and gather my supplies to clean his access once more. This is normally done prior to initiation of treatment, but hey this happens. It’s healthcare. I gathered my supplies ( Cvc dressing, two normal saline syringes 10cc , two 3cc syringes of 1.8 volume bolus of heparin, 4 alcohol wipes, 4×4 gauze, 2 blue chucks , and an extra 4×4 slightly saturated in a cleansing solution. As I’m rinsing back my patient at a 150-200 blood flow rate, I’m typing my post documentation, retaking Mr. Johnson’s blood pressure. I can see AW out of the left corner of my eye watching me. It’s funny because as a Dialysis Technician we are always watching everything let alone we are always in a fish bowl. Meaning we are always being watched. I mean, AW’s body is extended so far out like a giraffe ( LOL). Once Mr. Johnson’s blood is returned, I took his sitting blood pressure which was 148/76 and as I asked him to stand, along with his venous ( blue),& arterial (red) lines still attached to his Cvc access….. AW’s eyes are wide as a deer in headlights . I can just imagine what questions she may have for me. After Mr.Johnson sits for a few minutes, I finish up by helping him button up his shirt. I walk with him to the scale to get his post weight. Coming back as I turned the corner to go back to the Jamaica Pod where AW is sitting, she is looking at me anxiously while waving her right hand for me to hurry up . “ Hey AW, how was your talk with Eric and Anthony? I must say your first 45 mins to an hour of your first treatment have been quite fulfilling!”, AW replies ,” It certain tee wus boy !@( in her Jamaican accent),” What you be doing to dat Mans chest down der, boy?”.” Me saw those tubes like they be close to his neck and heart!”, “ Well AW , Mr. Johnson has a CVC which stands for Central Venous Catheter- which is also known as a central line , Central venous line, or Central venous access catheter , is a catheter placed into a large vein. It’s known also as a venous access. He has this access because he is fairly new to Dialysis and awaiting for the maturity to use his new fistula. You may not have noticed , but he had a Fist Assist Device around his left arm. As I mentioned before, the device is used to dilate and mature veins. A vein enhancement/ strengthening device. It is also known that a Cvc is a temporary access for renal patients. ,” Hmmm Dwelyn , now that you say that I do remember having that type of thingy in my leg/ groin area while I was in the hospital a few months back and I believe I had Dialysis then. Come to think of it, I did but remember very vaguely. I was in ICU and almost near death!” ( says AW) . “ Well if that’s true, you were in a Acute setting and considered critical . It is also possible that you may have only needed Dialysis for a short period with the risk of becoming chronic maybe. I’m not sure. So now getting back to the explanation of CVC’s… As you noticed their weren’t any needles . And no pain.” I couldn’t tell too much from here , but I get it. ( says AW). So sounds to me he didn’t experience any pain when you started his treatment?!?”, Exactly AW, majority of patients whom obtained CVC’s for their Dialysis access , do not experience much pain. However they’re more prone to infection. So the proper procedure for keeping the access clean and free of infection is very particular and severe. Let me explain, as we here whom are taking care of patients who have CVC’s , we have to gather additional supplies compared to if my teammates and I were giving care to anyone who has a fistula or graft. Just a little more time consuming , but not by much. So as you saw me standing there. I returned his blood through both access sites( venous and arterial), once his blood was returned I took his sitting. Blood pressure., then his standing. That’s when you saw him sit down and me slightly standing over him. Once he was stable , I disconnected his arterial line first with my right hand , and placed the line in the holder slot next to the dialyzer. I then scrub the hub for 15-20 seconds. Once I finished , I took my left hand with the Cvc port between my gloved hand and held it up away from the blue pad across his chest at a 45-50 degree angle so it doesn’t touch the pad. As I continue , I take my right hand and attach a Normal Saline syringe, inject 10ccs, disconnect the syringe and then attached a heparin bolus of 1.8 ccs to pack the catheter port so it doesn’t clot . After that I attached the catheter caps, wrap both ports with 4×4 gauze with my name ,date, and time.
AW replies,” Oh I see. So , let me get this straight. You may have told me before , but certain people or patients can have different areas or ways to get dialysis? “
Correct AW. I can actually bring out a simulation device to explain to you once our turnover is done. You know after we finish putting our 2nd shift patients on. AW says ,” Okay that sounds like a plan. I guess I won’t be going anywhere soon , so I’ll be here. But Dwelyn , who’s that standing over there?
As Ashley sets up her machine , a young lady comes out to our floor with a startled and frightened look. As if she’s terrified. Nicole is her name and she’s a new Dialysis Technician that’s just started with us and has finished her computer work in the back office of the clinic. I do remember our Facility Administrator mentioning that I would have her shadowing me today. I totally got side tracked and forgot. But in my better judgment I can actually have her talk to Ashley since she’s coming up on her first year and if anyone can relate to a new hire or teammate , is someone who’s considered fresh on the scene. And whom can paint more of a vivid picture of how to cope within our profession.
COVID-19 has had such a negative impact in the world but as with my last post about COVID-19 I still believe that there is light at the end of the tunnel and at the end of each day that light shines brighter and brighter.
After the first shot I felt much better after the second day than I had in a long time. Though still a little tired and still trying to recover after having COVID-19 I felt better though this could have been due to the thought that I could see the light at the then end of the tunnel. When it came time for my second shot I scheduled it to be on a Friday after work. As I walked into the building and made my way up the stairs to the clinic, once again could not help think of the great opportunity and honor that it was to be able to receive the vaccine. My mind once again started to think about the past year. The start of the pandemic, the changes that each one of us experienced, the challenges and even my battle with COVID-19 I was grateful that I had made it this far for things could have been so different.
Once called I went into the room to receive my vaccine the nurse asked me some questions and then asked which arm I wanted it in. I said to my left please I have a fistula in my right and would rather not have it in that arm. She said ok and said just relax, and you are done. The next day I was tired and my arm was a little sore but there other than that I had no side effects with the second vaccine.
Through my COVID-19 Journey as a Kidney Transplant patient I am ever grateful for this experience and thankful that I was chosen to take this journey even though there were some concerns along the way I passed through the valley of COVID and continue to travel on to the next peak . Since the start of 2020 and the start of COVID-19 life has changed for all of us. From those of us on the front line down, to those that have stayed home through this time. We have all faced different challenges, some lost their loved ones to COVID-19, some lost their jobs, some have stayed home throughout this whole time and there are so many other challenges that you the reader have faced. But this one thing I know that this is the test that has been given to our generation and once it is over History will share the stories and experiences to be read and taught to the future generations. What will history show? It would be foolish for me to try to predict what history will tell, but I hope that it will show that we had strength, resolve to never give up, that we cared for each other more and that we learned the lessons that COVID-19 had for us and that we applied those lessons to our lives and taught it to our children. Now as I finish up this last post of my journey with COIVD-19 I want to leave you with a few thoughts.
At the end of the day we are one day closer to beating this.
Be strong and of good courage you have made it this far.
History will show the resolve, strength and courage you and I had to come through this challenging time.
Cherish the time you have with your friends and loved ones. You will never get that time back.
Don’t take anything for granted.
Until next time stay encouraged on your journey for you are one step closer to the next peak.
In 2020, the National Kidney Foundation Quality Guidelines for Nutrition were updated to recommend a healthier plant based, whole foods diet for people with chronic kidney disease (CKD) with or without dialysis. With this in mind, renal diet recommendations encompass more heart healthy guidelines. This will allow for a greater variety of food offerings for the renal diet without compromising nutrition status. The new heart healthy recommendations are similar to the Mediterranean Diet concept. You will notice some of these items are typically considered higher phosphorus foods (cheese, legumes, whole grains). For most patients who are limiting intake of processed and fast foods, monitoring portions and taking phosphorus binders as instructed, these heart healthy foods should be tolerated if desired in your diet. If legumes and nuts are used as the protein source for your meal, it should balance phosphorus intake overall. This may be a big change from what you were previously taught. It will take some time for me to get used to saying you can work in beans or whole grains, but with the right combination of foods and fresh food choices, phosphorus control can be achieved (and your heart will thank you for it as well).
Super easy meal ideas
Boiled eggs (made ahead) + fruit
Overnight oatmeal (made ahead w/ whey protein powder) + berries
Nut butter and apple on whole wheat toast or English muffin
Greek yogurt + fruit + unsalted nuts
Sandwich with 2 fried eggs, or tuna/chicken/egg salad on whole wheat bread + raw veggies/fruit
“Grain bowl” with kale, quinoa or bulgur, feta cheese, roasted or raw veggies, olive oil and balsamic vinegar
Whole wheat pasta tossed with olive oil, pesto sauce, grilled chicken, leftover roasted or sautéed vegetables, and a squeeze of lemon juice
The following was originally written on January 1, 2021. With my 21st transplant anniversary just hours away, I sat down and decided to reflect on the incredible experience of my personal transplant journey. This journey is not for the weak of heart. In many ways, this journey makes you a warrior. This journey has been challenging in many ways. I have lost four transplant brothers well before their time. Every time this happened, I was reminded of the responsibility I carry. That is, to honor my donor and live my life in a way that my friends would want to live. With that, I give you 21 years: A Reflection.
You won’t walk
You won’t talk
You may not even see
So.. you tell me, who am I going to be?
21 years post and here I am.
Don’t say I am a victim because I am not a fan.
I prefer to say I can.
I can walk.
I can talk.
I can see.
So, this is how it is supposed to be.
Today marks 21 years
But with a new year comes new tear.
Others have passed, so why am I here?
Transplants are a fascinating thing.
Rarely do the good times come before the sting.
The sting of pain.. the sting of loss.
I guess everything in this life comes with a cost.
Today marks 21 years
Today, I live with no fears.
Today, I celebrate the life I have while also fully understanding the cost.
For I know my life was gained because another was lost.
*This post is in no way meant to diminish someone elses transplant experience. I have faced many challenges. However, the transplant journey is unique and the challenges are many.*
A Challenge from the Start:
When I woke up after surgery, I had a new life and a new millennium had begun. While I had gotten my second chance at life, I had a long way to go in recovery. Before I could even start the recovery process, I ran into a challenge. My new liver was not working well. In fact, my doctors put a sterile gauze over my incision site because they planed on doing an emergency transplant. What happened within the next 24 hours no doctor can explain. My liver went from not working to working. After leaving the hospital, my doctors said that I may have a new liver but being immunosuppressed would present challenges in fighting off diseases. Over the years, this has definitely proven to be true. Whether it be Mono, Pneumonia, the Flu or Strep Throat, it often takes me more time to fight off diseases. In elementary school this was a challenge and I ended up being put on hospital homebound.
Beyond this challenge, I also had a lot of rehabilitation to go through to overcome the neurological damage that had occurred before my transplant. I remember being in therapy and having to learn how to draw a circle on a piece of cardboard paper. I also had to learn how to cut the circle. Learning this process took two years. The first year was spent learning how to hold the marker and drawing the circle. The next year was spent learning how to hold the scissors and cutting the circle. This was extremely challenging, but I was able to succeed because of the unrelenting dedication on the part of my occupational therapist and my parents.
Another challenge of my transplant journey has been in learning whose input and opinions matter. Unfortunately, there have been many who have chosen to look at my past challenges and draw conclusions on what I will be able to accomplish in my life. In school, I had to work hard to overcome some learning challenges, but I never gave up. In the midst of my formative education, some chose to not speak life but criticize and opine on my future potential. For a large part of elementary school, I chose to listen to these voices. I was not the best and my peers had no problem making it known. By fifth grade, I had a choice, listen to the lies or to the voice of truth.
When I started high school, I had to take the most boring test I have ever taken in my life. This test was given to “help” me know how prepared I was for college. Needles to say, things didn’t go as I hoped. After I got my test results, I asked my academic counselor what the numbers meant. In response they said that they didn’t want to say it was an absolute but that I should “probably consider an alternative to college”. In rage, I got home and ranted to my patents about how much of a failure I was. I was angry because I was just not good enough. At least that is what I thought. In reality I had made major strides academically and was preforming at a level no doctor or even my parents once thought was possible.
After talking with my parents, I learned the truth of what actually happened durring my cardiac arrest and seizure. I saw the tests and how I had consistently improved over the years. The day after that conversation with my parents I was called into the student success center at my school. At first, I did not know why I was there. Then the main person overseeing the center told me that they believed that my test results on the standardized test I had recently taken did not accurately reflect my abilities. This conversation was like a revelation redirecting my dreams. I wasn’t a bad student. My academic advisor had just decided to focus on what I couldn’t’ do rather than what I could do. I went on to graduate on time and with an incredible GPA. Since then, I have gone on to graduate with honors from the University of North Georgia and the University of Georgia. I am almost done with my Masters of Social Work and I am on track to graduate with honors. How is this possible? The tests said I wasn’t good enough. The advisor said I may need to consider an alternative to college. The doubters said get back in line and wait your turn. Well… I don’t think so. I will not listen to people whose opinions of me don’t matter. You should not do this either. All my life I have been told by some to wait in line. Now, I am on a mission to create the line others leave to join.
Are You Covered?
Beyond the challenges early on with my organ graft and my school challenges, I have also faced challenges in learning about insurance. Thankfully, this challenge was short lived thanks to my incredible transplant team at Children’s Healthcare of Atlanta. Thanks to my transplant team, I was able to learn the difference between prescriptions and hat insurance would and would not cover. By the time I was in high school, I was approached by my transplant team and asked if I wanted to switch my medication to the generic prescription. While this would have been more cost effective, I chose to not make this change. I was about to go on a trip of a lifetime to Philmont Scout Ranch and I wasn’t about to miss that! I also did not want to change because I had been on the same medication for over 10 years. Tome my view was “if my liver is happy, don’t mess with it”. I ended up not making the change and I am thankful for it. Sure I could have saved some money but I was already part of a program that helped with medication cost assistance. Even today, it is important that I be aware of what insurance will and will not cover. With everchanging healthcare polices, this can sometimes be quite challenging.
The above are just a few examples of the challenges I have faced durring my transplant journey. In my next post, I will discuss some of the many joys of the transplant journey. That post will have to wait until another day.