Loss of Control

Hello, my name is Loretta Lee and I have taken the tour! I am not just a CKD patient; I am a human being with various roles to play in life like mother, grandmother, wife, sister, daughter, Registered Nurse, comforter and caregiver.  I would like to focus on being treated as a human being during my “tour” of the healthcare system. I would like you to know what impact your small actions, words and even non-verbal’s have on me. Expectations, I believe hold a great part in the tensions or misunderstandings in healthcare. We all come to the table with preconceived ideas of what our care is going to look like, how we will be treated and attended to. As a patient, I never feel so vulnerable until I enter the acute care arena.  Let me share my experience:

My lived experience encompasses many years of CKD which included a preemptive renal transplant that lasted for 20 years, followed by starting peritoneal dialysis (PD), troubleshooting the first catheter, just to go back for surgery to remove the PD catheter, insert a new one as well as place a central venous catheter (CVC) for hemodialysis (HD), My biggest fear had arrived despite me trying absolutely everything I could with my nursing knowledge although limited knowledge of PD I had lost control. My health was in the hands of the healthcare team.

 You see, I had to have plasmapheresis after my transplant, and it was a terrible experience. Not only was the placement of CVC painful, but the course of plasmapheresis did not go smoothly: I experienced adverse events with each hook up which proceeded to get worse with each treatment, leaving me to abandon it altogether. I was told that this would be a “walk in the park”, well they didn’t tell me the park was New York’s Central Park at 3 am walking around with a cool million.

So, getting back to starting hemodialysis while my new PD catheter healed, sent me into a flurry of emotions. As you may imagine, I was fearful, anxious, and felt like my life was no longer in my control: I was basically forced to do this in order to keep living. I never wanted HD, however, I knew that this had to be done and that it would only be for 2-3 weeks. I could deal with that I thought. So, in I go dutifully, to have my in-center hemodialysis 3 times a week for 5 hours each time. I quickly learned the “patient culture” and proceeded to fit in.  All the while hating every moment in that chair, feeling trapped. I couldn’t even stand to stretch for fear my blood pressure would drop and the nurses would be scooping off the floor and filling in an incident report and we know that’s not on the agenda. 

I was very thankful for the kinesiologist that got me started on cycling during my HD. She was very encouraging and empathized with me, and this gave me something to look forward to and take up some of those long 5 hours trapped in that chair. Her encouragement and empathy, her sharing of her experience with similar problems was very appreciated and comforting. During these early days, there was something that caught me off guard: 

I thought it odd and somewhat frustrating that the RNs on the units would ask me how much I wanted taken off at the start of my runs; my thought was, “You’re asking me??’ I am new to this, so I really don’t have a clue although I know it is best to take off the calculated amount. I also know that some people will have significant leg cramping if too much fluid is taken off, but I also understand the repercussions if you don’t have the best dialysis you can. I wish instead of asking me, they could have explained more as to the consequences short term & long-term insufficient dialysis and the various factors that would reduce or prevent the adverse events, like exercise.  I am not sure why they asked this? Was it because they knew I was a RN, was it one of their ways to involve me in my own care? I am still not sure, but I do know if they had explained the fluid removal volumes and the consequences then I would’ve felt more confident in having an answer and having some control.

I was arriving to HD by myself after the first one, as my husband was frustrated and because my “slot” was evenings from 6-10:30 or 11 pm, my husband would be too tired, overwhelmed and stressed to get up & go to his job. So, there I was trying to be the “good patient”; pretending I had this all under control, taking it all in my stride as best I could. I was still working as a RN in three different clinics as well.  Low and behold, my third trip in I had an emotional breakdown that engulfed me in a tidal wave of various emotions. I remember getting settled and hooked up, I knew I was exhausted, my heart felt like it was sitting heavy in my lower chest. Before I knew it, I was crying uncontrollably, it was a struggle for me to speak due to the intensity of my emotions of being overwhelmed, losing control, feeling trapped in the chair. I so wanted to be on the other side and giving the care. The best part of that night was when one of the HD RNs noticed me losing it and came over. I wasn’t sure whether this was good or not, I struggled with being so very vulnerable at that moment in time. There is no privacy: I am sitting out among my fellow CKDers where they can readily see my meltdown. I couldn’t help but to keep telling myself to “pull it together”! The reaction to a meltdown is either avoidance with hopes I will get it together, or some brave soul recognizes the need and addresses it. I had an angel there that evening: one of the RNs crouched down and put her hand on my arm and simply shut out everything else going on to focus on me. Such a simple act that provided a lifeline for me in my vulnerability, my exhaustion, my fears. Her act of touch, empathy and encouragement was such a blessing and I will be forever grateful for her nursing art.

The moment I received the BEST healthcare was when there was no medicine, procedure, or testing done, but rather, the simplicity of the human touch, the connection that is worth more to me as a patient then the latest technology or the best medical care provided. Humanity, dignity, respect and the greatest of these is humanity.

Release


Have you ever been so determined in your choices during life that when things get rough or tough you work harder ? You just don’t think of anything other than the life you’ve always known, loved, lived, and worked for. For me, this has been almost 54 years now.

That’s right, more then half a century down the proverbial road of life. I can certainly say that my road has been pretty hairy! Born into an average working family back in the 1960’s and brought up with the “Stiff upper lip” philosophy, there wasn’t much room for any moaning or groaning. Like my Dad would say often enough, “ shit or get off the pot”! Can’t get better encouragement then that😉.

With my “can do” attitude I set through my life journey under my control & certainly under my desires & wants. I did not have to rely on anyone, didn’t need to, because I had it ALL under control. Pursuing my chartered path to do the best always in all that I undertook; even remembering in grade 6 how I was so upset and was quite indignified when I handed in a school project on time {remember I said “Can do”?}, just to find out others had not been able to complete their projects so the teacher wouldn’t mark it! I was gobsmacked at 10 years old. Thankfully, that pattern did not continue further in my education pathway. So, I set my sights on not only getting my grade 12, but then carrying on to College and/or University. And that is just what I did! That “can do” attitude coupled, with the now well entrenched idea, that I could achieve anything if I wanted.

No matter what life through at me, I just kept on, asking no one for help or a shoulder to lean on. My life was my own, and it was MY destiny, power, determination, experience, and hard nosed ness that perpetuated and propelled me down my life road. Sure, I believed in a being greater than myself: God.

Somehow, God didn’t really factor in to my life. Sure I’d talk to him on Sundays, I’d sing songs of praise, I’d teach Sunday school, read scriptures at church, joined various church groups; even the alter guild! Never missed a Sunday growing up, because my dad was the minister for many years until he not only fell off the wagon, he jumped, rolled, he danced off that damn wagon. Before that? Dear ol’ mom was the driving force and role model when it came to living a Christian life.

TRUTH

It hasn’t been until the last year or so that my childhood mentoring became a force or a self-repeating mantra where I now feel a connection with that elusive being of higher power; God. It is true that no one needs a higher power until life through some rocks or boulders your way. I started this obstacle course when I was 26 years old. I just gave birth to my “prayers came true” baby girl who was perfect! Next? Well kidney disease of course; 27 years of this life journey. This is where life got real rocky: my health slowly went down the toilet until I needed the next step. I was blessed to get a transplant kidney before being subjected to any form of dialysis. Then, 20 years later, that blessing started to go: I prayed to God that if he would allow me to make it to not only my only daughter’s graduation(s), and then make it to her bridal shower , then the BIG day, my daughter’s wedding to her soul mate, then He could have his way with me.

You have to understand, that at this point I saw the wisdom in all the boulders and rocks that I’d managed to dodge. After all, it was God’s plan for ME that had happened. I am told that all good things come to those that pray and have faith in the Lord. I was beginning to see and feel this. When I was battling a deadly pneumonia in December, I found myself in the hospital chapel talking, singing, raging, and begging/bargaining with God. This was very personal and cathartic. I felt enourmous stress and pressure lifted. This had happened one other time in my past with the same result; that of utter peace.

Now, just these last weeks I was again tested by some new boulders as well as some fire as I had to face one of my worst fears; having a central line put in and having to start hemodialysis. It wasn’t just that, it was also having to have surgery to remove my peritoneal catheter and then put a second in. It was a long day on March 1st. The good news? With the support of friends, family, and God, I `made it through😁. Of course my human desires, fears, anxieties, and apprehensions rose far above the voice of God. With help from good friends, I was able to rise above the clatter of fear and anxiety and find myself in a calm and peaceful state going into my surgery as well as my first hemodialysis treatment.

THE RELEASE

To be able to release your negative emotions like letting go of a tug of war rope, gives such a huge blessing! Not only does your stress, anxieties, and fears fly away like a hot air balloon that’s too hot, but it leaves your soul and spirit refreshed like the juices of a fresh cut lemon; just oozing out and nourishing, crisp.

Well, if nothing else, I have learned to really appreciate the saying, “ah but for the grace of God, go I”. Even though I have lived a half century not grasping this concept, I am truly BEGINNING to understand the Christian life: what it is, what it offers, what it means for your heart, soul, spirit and most importantly, for my family and friends.


On the front lines: human frailties & brokenness

“The front lines” no doubt conjures up many different images and emotions depending on just what your “front lines” have been. In general, I believe it is a term that represents a battle, something to conquer, something that requires your best and potentially your wholeness in its entirety.  Not so long ago, I was at the “front lines” of my life while laying in an emergency (ER) department being treated for double pneumonia. I was very sick: “the sickest person in the ER” as the ER Dr said, and this was something, as they were very busy.

Now, some may think pneumonia can’t be that bad, surely in this day in age? It is actually deadly for people like who me who battle daily to stay healthy while living with CKD: chronic kidney disease or even ESRD: end stage renal disease. I have been blessed for 19 years next month to have had a transplant which has enabled me to live a productive and very enjoyable life until these last few months as my kidney function has faulted once again and I find myself back on the battle lines fighting to live even more fiercely. My immune system is suppressed as part and parcel of being kept alive with a functioning transplant. In case you don’t know, this means you are at higher risk to be severely ill from things most people can just blow off; like the flu (aka influenza), gastrointestinal infections, cancers, and yes, pneumonia. Well, I found out I had the meanest pneumonia going….and so, there I found myself on the front lines of the battlefield of life and death once more.

While in the battlefields (as I was in the ER for 3 days), I was witness to the human frailties and the brokenness of all kinds. The biggest battle in this world of life and death is the pain, the brokenness, vulnerabilities, loneliness, and family/relationship tragedies that are seen here. Most pronounced was the young females that came and went: all were under 21 years, all were there because of drugs/alcohol and an incident involving either suicide attempts/attention-seeking or being the victim of low self-esteem, anxiety, depression. One of these young ladies actually “coded” and was brought back to life just to be belligerent, combative, angry: broken. After calming down, being nursed, being treated and cared for through their respective hazes of drugs, alcohol, and trauma from the accidents or incidents that brought them to the ER, their families slowly trickled in. The heart-breaking conversations, or lack of, the looks on parent’s faces, the tears, the guilt, the lashing out in anger, the harsh words that poured out from these young ladies and the failed attempts from all that cared to reassure the young women was a very sad and heartbreaking thing to witness. The parents without fail all displayed brokenness.

broken heart

I can only imagine how I would feel if that was MY daughter there: so many emotions and thoughts that would coming pouring in. The bodily responses would be significant: that weight you feel in the gut that hits you like someone has just ripped your gut and heart out all at once in some barbaric Viking punishment, leaving you literally without breath, reeling, all sorts of pain rushing throughout your brain, your heart, your soul. “WHAT IS HAPPENING”? “HOW CAN THIS BE?” Soul-searching questioned pound through your brain, you search your heart, your soul, your memories, your last words spoken all in the vein attempt to make sense of the battlefield that you find yourself knee deep in!

Battling CKD, having the hope of living “normally” even when your kidneys are failing and having to face many little battlefields over many years or months takes a toll on your soul, your spirit, your humanness, your mind, and lastly, on your physical being. I carry the scars, both physically and mentally of having waged war many a time. Being in that ER battling for my life with pneumonia was a battle I would not want to go through again and would not wish on anyone else. I will be ever grateful for the insights, the lessons taught to my heart, my soul, and my person during those days in the ER and the subsequent days in the ward. It opened my eyes and heart to the brokenness there is in this world. I can only say that everyone of us is battling in battles every day!

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I will leave you with a song my daughter texted me after we had had a very emotional discussion, I know for some this song will resonate throughout your body and soul as it did mine.

Dear Life

 

 

PEANUTS

Peanuts: Lucy, Linus, Charlie-Brown & Snoopy. You know. What is it about Peanuts that so many people could relate to, laugh, cry about and keep you wanting more? Cathy Guisewite ( a comic strip cartoonist) said of Charles Schulz (creator of Peanuts) “He gave everyone in the world characters who knew exactly how all of us felt, who made us feel we were never alone…He encouraged us. He commiserated WITH us.” Charles Schulz had compassion and a real understanding of humanity.

As my life unfolds and the lives of those in my family, my friends, my patients, as well as the city I live in, more and more, these last two qualities are the HEART & SOUL of surviving in this world. Life is hard: EVERYONE has battles, and it doesn’t matter whether in your view they are important or “worthy” of attention, love, compassion or time or whether they are not. Look deep into the eyes, make a human connection and yes, speak to people. That one “hello” with a smile may be the BEST thing in another person’s life.

I recently watched a Ted talk: discussing the virtues of talking to strangers. Making conversations (gasp!!!) without some device, creates a connection which may lead to another and another until we have a “world wide web” of people actually connecting and talking for real! I ponder what that would do for our self esteem, our depression, our anxieties, our stereotypes/stigmas, and the list goes on. Do you KNOW your neighbor? Do you KNOW your siblings, your parents, your BFF?

As some of you may know if you’ve read my blogs, I have my own struggles: CKD (and facing dialysis & transplantation once again….), hemochromatosis, on-going skin cancers & operations, medication side effects ++ including diabetes which thankfully I have the determination to keep under control. Then there is life. We all know how that goes, for some pretty good, for others, like myself, we have our fair share plus some  extra.  All that aside, I struggle, I cry, I get overwhelmed, I want to walk away from many things. More and more, the people you expect to be comforting and somewhat of a “stronghold” even if that is just for a few minutes, are really not up to the job. Certainly, I must ponder, where is their compassion/humanity/empathy??

I am trained as a Registered Nurse: even went so far as get my Master’s. Does this matter? Yes and no. The knowledge is GREAT!! I am able to help/guide/facilitate the majority of my patients and they are very grateful, expressing it in many ways. Verbal feedback is still awkward to receive even when I know at a  cerebral level that I am making a difference in their lives, it is still hard to hear. I am working on that and I am letting those comments into my heart and soul to help in my journey.

Compassion and understanding are the essentials of what make people keep going when things are less then desirable. People that can sense when these things are  needed are true angels. I can feeling like just curling up and not want to do anything but stay warm by my fire, inside, where I can cry, scream, read, meditate or just zone out with some great music. Then you get that “ting” or some other audible cue that there is SOMEONE out there that has shared something or is trying to send you a message. I am always glad to hear it & will often go check it out: so happy and a mood changer if it’s a friend or something positive, and conversely, a cold caller, mindless “forward”, etc. just makes me want to recoil more. Back to the actual talking to people: talking to strangers, HEARING friends voices on the phone, and better yet, meeting up with them eyeball to eyeball and having that connection, humanity and share in our commonalities.

This isn’t just “peanuts” we are talking about. There is a richness within all of us, we don’t know about it unless we share of ourselves.

 

Comedic Irony or Blessing

It’s been awhile since I have had the urge to write, but I am broaching new ground. Today I had   a home hemodialysis assessment. This is not something that you are really keen to do or have to do, but there really isn’t much choice now is there? Either you do dialysis or you wait to die in a uremic coma or of a heart attack due to metabolic acidosis. So, being a RN, and being human, being a mother, a wife, and being relatively young…there is no choice for me. I want to live! So, while dialysis is the only choice other than praying for a transplant in a country/province with a dismal donation rate, I’m not holding my breath.

Comedic irony or a blessing: I am involved at work with helping those with all kinds of chronic diseases. As a RN  my job includes managing and help people with living a healthy and meaningful life. However, the irony is that  I dealing with a few   chronic diseases. In many ways it is a blessing as I can REALLY relate to my patients that struggle with the same things I do or any that are similar in terms of effects on quality of life. It wasn’t until a year or so ago that I discovered the concept of grieving in chronic diseases: the loss of the many things or activities that you may be unable to continue with or are limited. It really does change your views on many things in life, love, work, family & friends. Many days you are just happy to get through a day or be happy that you can still manage to work. I think this aspect or managing chronic disease is huge. Just listening to the patients and for myself, try to be reasonable with my expectations and planning so as not to get into that downward spiral into depression. Then there are the days of wondering “why am I still trying to do everything, be everything & everywhere”, when inside you just want to be at home curled up with a warm blanket & your warm bean bag. The disease(s) is one thing but the person, is more than that. Everyone has their snake to kill.

Hope continues for each person in their struggles, even if that hope is something simple and/or comforting. Cuddling with a loved one, have a great visit or coffee date with a friend, managing to get out of bed!!! Hope for a better day, hour, or result. Hope to have more time with family and close friends, hope for better connections with people: meaningful and genuine.

Blessings: yes, with chronic diseases can come blessings and positive outcomes. Like it’s been said so many times, attitude IS everything. It does no good whatsoever sitting around feeling sorry for yourself. There can be so much joy and happiness by continuing to be social, to be involved with other causes or hobbies.  As a RN it is a blessing to be able to really relate and be able to articulate accurately a patient’s experience when they are struggling or unaware of the real impact on their psychological and emotional being. Being genuine as a RN is very rewarding and at times I think it is more valuable than all the other nursing tasks and knowledge. Connecting at a human level and connecting at the heart and soul of another is an extraordinary feeling and privilege.

 

Enjoying life with others

I’ve been living this life for as long as my 25 year old daughter has been 1 yr. That’s a lifetime. I have found that you can’t dwell on the myriad of health issues and complexity of health needs, but rather, need to enjoy what you can. I have found and really enjoy and have a passion for photography. I don’t claim to be a professional, but I think I do alright and have learned a lot about this skill, hobby , and potential business opportunity. I have met a great bunch of people that share the same interests and love to see how others will photography the same thing but each will be different. This hobby lets you see the world differently and interpret it according to you, your day, your mood or more importantly, your inspiration. I have met some people that normally would likely never meet, which is great, because I have been able to see others different from me but see their passions and gifts all the while getting to know about them: a definite plus!

If my energy level is good and the ol’ bone marrow is working, dancing is another activity that I absolutely love!!! The music, the moving, the expression in dance , the mood and various rhythms of the dances takes your body and soul in different states of mind. There is nothing like dancing with a partner and you’re in sync! The ease with which you can move around the dance floor is fantastic. I can’t get enough, even though I may be exhausted, I just want to dance all night!

The grind of CKD and other chronic diseases entails many appointments, many blood tests, testing which becomes really intense when facing possible transplant or starting some form of dialysis. Both the options involves including others: Dr’s , RNs, NPs, RDs, surgeons, anesthetics on the health front, but there is also your family who’s lives are intertwined with yours. You need the input and help of all of these people to continue to enjoy your life, although this will mean changes. Surrounding yourself with positive and up-lifting people is key. You have enough on your plate without having to deal with constant “debbie downers”. Manage this and you will still have good quality of life. Connecting with others gives us so many positives and stimulates ideas, conversations and new points of interest or viewpoints.

No matter what is going on with your health, surround yourself with human contact.Make the best of things and have that Kodak moment as often as you can. After all, life is not measured by the number of breaths we take, but by the moments that take our breath away.

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Walking the Mall

Have you ever found yourself wander through a mall? You don’t have a list, you don’t need or want anything but you go because you’re restless, at loose ends, bored perhaps? You want to feel like you part of society or at least still able to feel the vibes of life and soak that up a bit. so you go the mall and start to wander and ponder. You wander up and down, stopping here and there when something catches your eye or you’re just curious. There is no agenda, there are no thoughts or concrete decisions: just wandering to see if you can find some sort of deal or “treasure”. Then, there comes a point when you are just not interested in continuing to comb the mall. Your legs are tired, the feet are sore, and now you just have this need to get the hell out and go home, but then you discover you are far from the exit you came in are now have to look for the closest directory, just to find you are the opposite end of where you want to be….more walking. I just want to go home, it was fun while it lasted.

No, I haven’t been to the mall lately, but I do however feel like I am wandering: searching for something that I can’t quite find. Let me fill you in a bit. I recently went to a class to find out more information about “kidney choices, aka, hemo or peritoneal dialysis”. They give a good info session, but they can’t answer the real “nitty gritty” of living with either of the choices. Whichever you chose, this is it: that’s what you do EVERY DAY of your life for the rest of your life or until you either die or get transplanted. Of course, there are pro’s and con’s to each. It boils down to do you want to live or die? You wanna live? Great! You will need an operation any which way you go. There is less pain with PD as at least you don’t have to “needle” yourself daily and you just end up with a big tummy, a little “hose” hanging our of your abdomen (no more bikini days….AND this mean more mall walking because none of my clothes with fit), the chance of organ prolapse because I’m female, menopausal, etc. and lastly, at risk for peritonitis. If that’s not up your alley, or for some reason you can’t have PD, there is hemodialysis. Yes, it has come a long way since the first “run”, but you still have to “needle” every day, which means chances of infection, having your home modified for the machine and the water supply.

The unknown is a scarey a place. I am wandering in unknown territory for me. Being a RN is not helping. You may think that strange, but because of my training, experience and knowledge, I tend to remove the emotional side of all of this until I can’t bear it any longer: like today.  The impending changes are just too much to wrap my emotions and life around. How will I FEEL?? Will I still be able to work? What will my quality of life be like?? Will I feel like walking like I do now, going to the gym? I already know my diet is going to not be so great ( All I can think of is applesauce and more applesauce). There are too many unknowns and the change is going to be huge. I’m sure I’ll get through as many have done, but at what cost? I already have days when I’d rather just curl up and have nothing to do with anything/anyone or time when I just want to be sedated so I can sleep without having to be up, worry, have cramps, have other issues that keep me from sleeping well. No, I am not suicidal. Just very tired of dealing with this thing we call “life”.

Yesterday was not a good day, having heard some sad news from a friend just seemed to tip my emotional “put togetherness” off. It was really difficult to get through my day at work to the point where I just had to get outside for a walk. Then when I finally got home I drove into my garage and sat in the car a bawled. I had just so much pent up emotions and energy that that purgative bawling was good. Then I was able to put my shorts on and some runners and go for a long walk until my legs were going to give out. This is what I needed. A good cry and some sunshine and fitness. I think today will be better.

Mall words