My Journey into Chronic Kidney Disease aka ride of a lifetime.

Perfectionism Gone Wrong

Hi, my name is Loretta. I come from the Celts: I inherited the same stubbornness and never say die attitude. I am a strong, resilient woman, mother, wife, grandmother, sister, friend and have pride in my nursing skills and knowledge. I am a woman of faith. It is me that my friends, family and patients turn to for resources, for care, love, advice and comfort. My friends and family value my knowledge, experience and my humour. I keep things going and ease tensions. I am an initiator, collaborator, as well as a “take charge” kinda gal.

So, when I was diagnosed with CKD (chronic kidney disease) about 28 years ago, I saw this as a new challenge to control and perfect. After all, I was an RN and that is what we do!  I had also just had my first and only child whom I was still breast feeding when I got the word. I am not sure if it is because I was an RN that I received the diagnosis the way I did, but it was pretty blunt. I had been having “tingling” in my back when I went to my GP who promptly referred me to neurology which was sometime away. 

At the urging of my mom, I sought a second opinion from her GP. He was baffled at my symptoms and physical exam so he ordered a bunch of labs tests which included a simple urinalysis. Not long after, I received a phone call with the news that my protein in my urine was “off the scales”, I knew that was not good! but I still didn’t think of CKD.Well, the next thing I know I have an appointment with a nephrologist. I went to this appointment alone. There was no softening of the news, no delicacy: You have CKD and you will need dialysis or a transplant. What an intro into the world of CKD!!BAM! As an RN, this really didn’t shock me, as I knew from my studies that this was the course of action, no biggy I thought. In retrospect, I wonder how having a RN there to explain things in a more comprehensive or “caring” way would have done? A conversation that would give me some idea of what this new diagnosis was going to mean for my life.

Shortly after diagnosis I became very ilI and was admitted to hospital in Edmonton and then transferred to my home town of Ponoka. I was in hospital for 3 months. I was so ill that my RN friends thought I was going to die. I was so short of breath with the anasarca that I couldn’t finish a sentence. 

The most vivid thing for me was laying in the hospital bed at night and literally crying out to GOD. I was terrified that I was going to die! My body had betrayed me and was now so full of fluid that I couldn’t function, I couldn’t care for my 1 year old daughter, I had to stop breast feeding her which is something I never had to time to grieve. I had no shoes that would fit because my feet were so swollen and painful.I bargained with God, I told him that his plan sucked if I was dying. I guess my prayer was heard.

Still relying on my own strength, knowledge and perfectionism to manage my CKD. I watched my own numbers, measured, logged, and compartmentalized my life. 

A year later, I went to see my GP once again. I sat in his office and stated that I don’t understand why I feel the way I do? My “numbers” were all in range, so why do I feel so tired? I was frustrated. My GP leaned forward and locked his eyes with mine and in the most meaningful and caring tone he said, “Loretta, you have chronic kidney disease”. That was all l needed to make me breakdown emotionally. I cried and cried because I finally had someone recognize the impact of those words and that diagnosis and convey that!  He took the time to make me realize that the “numbers” don’t really add up to the whole. It was only then that I started to question why me??? I had always lived a healthy lifestyle, I did all the “right” things., but now realized the true impact of having a chronic disease that despite your best efforts will progress and end in dialysis or transplant or death. 

I did get to end stage renal disease and by the Grace of God, I got a pre-emptive transplant and continued to live life to its fullest. I got 20 years out of that transplant: much more than what I was told. When I got the “call” for the transplant I was shocked when I arrived to find the nephrologist tell me I’d be lucky if I got 5 years out of it and did I still want it? I thought to myself, “of course I want it!!!, what kind of a question and attitude is that? Do you realize I just dropped everything in my life to come here for this? I brought my young daughter out of her class, packed a few things and drove here on my own to receive this! 

20 years later, the graft was failing. By this time, I had a great relationship with my nephrologist and we could talk freely. She had come to know me well and she respected my knowledge both as a RN and as a patient who knows her own body. When I had questions or thoughts about what was going on physically or medically, she would listen and respond in a way that was a conversation. As my graft failed, we had more intense conversations about my medical management with the immune suppression and that of transitioning to dialysis. She allowed me time to wrap my brain around the whole transition and didn’t rush the decision to stop the immunosuppression for fear of rejection and yet another operation. 

That baby girl that I bargained for from GOD was now grown up and soon to be married! Such a joy and very emotional time in my life. My daughter’s father had died just the year before and now I was the only parent she had. I knew my kidney function was degrading and a I found myself  back at GOD’s bargaining table: God please let me make it to my daughter’s wedding and after that, I don’t care what happens to me. Graciously, this was granted. I was able to be a part of the wedding planning, and of course walking my daughter down the aisle. I dressed to the nines, I had a blast, I danced & danced, even when it was just me on the dancefloor. I was exhilarated! What a blessing that day was. 

Two weeks later, I was starting peritoneal dialysis. There was no more bargaining to be done. So, on July 3rdI started my first dialysis session with a wonderful RN who was respectful of my knowledge and comprehension as a fellow RN. I felt very grateful that my new partner in health was on my side and truly worked with me. She showed empathy and concern for the transition I was going through. 

Fortunately, I was familiar with “doing” PD as a RN, so I was able to go home and carry on with the treatments. My planned freedom on PD was soon not so free and I was advised that I needed to have the PD catheter removed, another put in & a central line for the healing time. I was so anxious and frightened to have a CVC and go on HD because after my transplant I had had to have plasmapheresis which did not pan out as planned. In addition, I was still working as a RN and was feeling so exhausted. 

My nephrology team was understanding. The healthcare team recognized my fears and anxiety with the placement of the CVC as my last experience was terrible and painful. I felt very cared for and felt that they had understood my feelings and needs. The next step was starting HD: my first time was filled with trepidation because of what I had experience with plasmapheresis. 

The machine revved up and away we went. To my great surprise and huge relief was that HD was going very well! 

However, on the third run, I had an emotional breakdown and just started to cry and cry as I sat trapped in the chair. It was the cumulation of all I had been dealing with, suppressing, perfecting, controlling. Low and behold there was a caring soul on duty, a HD RN that saw my distress and came and sat with me. She tried to reassure me, she was empathetic, she cared, and she was taking the time to just be with me as I continued to cry and was unable to articulate anything of sense. I felt defeated. I felt I had no control anymore.  That RN’s time, gestures, non-verbal’s, and the few empathetic words was a huge blessing to me that night. I don’t know how long I may have been in distress if she had not come along with her nursing art. What a long way I had come in my “journey” with this emotionally and physically exhausting disease. I will never forget how those few minutes spent with me when I was so “done” sharing in my weakness, my vulnerability, my exhaustion, and my loss & grief comforted me more than any other healthcare experience. You see it only takes a few minutes of your time, but it makes a HUGE impact on us, those that are in your hands when we are at our worst.

What I’d like you to take away from my experiences is that “healthcare” is at its pinnacle when the humanistic properties are crafted or intertwined into care in busy and demanding wards, ERs, specialized units, etc: those of stopping to empathize, SHOW caring by touch, non-verbal’s like engaging in meaningful eye contact. Meeting the patient exactly where they are at, putting yourself in that place, if only for the next 15-30mins, how would you want to be treated or valued?

Thank you.

Beauty

I was reminded the other night about “beauty” being only skin deep. Yes, it is true. I was attending a meeting with other ladies and one of them read us a short devotional if you will. The topic was “beauty” and discussed what we all know: that:  being  that beauty is considered in that which gives us pleasure or is pleasing. That got me to thinking about it.

As a society, we value beauty, not just in our bodies/faces but also in our surroundings. You mention the word beauty or beautiful to anyone and they will picture something or someone different from you. Ahhh, yes, beauty is in the eye of the beholder, right? There is such variance as I think of that tribe in Africa that sees beauty in a long neck: girls start to wear these metal neck rings to ensure their necks are elongated, the Japanese at one point thought/valued small feet and women would bind their feet and became deformed, some think piercings and tattoos are beautiful, others like make up, hair dyes, etc. We certainly know that people are willing to spend their hard earned money on cosmetics, plastic surgeries, botox, body building, tanning and the list goes on. How can you not when you are continually bombarded with images and messages, some outright and others sublime. That just considered the people, there is a whole other realm of beauty to be had in our homes, in our gardens/yards, communities, cities and the world over. Don’t get me wrong I like pleasing things just as much as the next guy, I just get the idea that beauty is only skin deep meaning that beauty is something more than superficiality.

For instance, take the blind or visually impaired: how do they describe or experience beauty? Obviously, it is not something they can see, but rather something else they must sense: I would think their sense of beauty would lie in sounds, smells and touch/taste. We talk about our “mind’s eye”, which I think is what we picture in our minds, but how can this be for someone whom has never seen anything?? What do they picture?

There are so many interpretations or views of what is beauty: Take a look at these photos. These are considered beautiful images of women, which is truly beautiful?

colorful ppl_edited-1thLVYUPB0C

Ash and me 2beautiful_girls_make_the_world_go_around_640_04

As I go through life, I realize superficial beauty is a wonderful thing if you have it, but if you don’t (according to society, or even your friends) it doesn’t mean you don’t embody beauty. When I look at photos or images of people, I gravitate towards the eyes and the laugh/smile. Why? Because they usually can’t lie. I think beauty is something we also carry inside and is shown to the world by our eyes, our smiles, our laughter our hearts and souls (our actions or words).  Maybe we have a wart on the end of our nose, maybe we have bad acne, maybe we have scars or burns. We have beauty inside which can emminate outwards. As women, we have many roles, many important parts to play individually, as a spouse/partner, as a mother, sister, friend, etc, and the list goes on. Society would lead us to believe our worth is in something so superficial that the least blemish will send teens and perhaps younger now into a panic!! Lord help them when they are faced with something that is potentially scarring: whether to her external beauty or to her internal psyche. The latter of course being much more damming. For me, with my journey of aging, and this on-going battle with skin cancers, I have had to let go of the societal image of beauty and be a better beautiful person. Every day is a new day and I am thankful to have the health I do and am still able to enjoy much of life.

My world through the lense:

Looking the lens of my camera makes my work manageable and beautiful if I chose or I can make a statement of impact. Photography is a wonderful hobby and potential cash maker, if you work hard enough, practice long enough and in the correct way, using your equipment correctly and actually read the manual(s)!! But, grabbing the camera for a morning or even a hour and just get away from the every day has such worth for me in terms of fun, socialization, meeting new people, connecting with life minds, learning and growing together.

There is such a feeling of calmness, possibilities, and excitement at what may be and the push to do something different! Just get out and shoot. Have a goal: my present goal is to continue working with my equipment and become more comfortable if off camera flash and actually DO fill flash. I have done several natural light photos which I do prefer that “earthy” soft light. I dream of being able to take those photographs that make you stop and think , “wow, that is  such a great capture, so creative”!! It makes me slow down and breath, enjoy what I am photographing and have some fun.

This hobbies which has led me to meet many fantastic people with varied talents and knowledge which is a real blessing.

Chronic kidney disease (CKD) is a pain in the assets, if you know what I mean. All the scheduled appointments, labs, scans, Drs, RNs, RDs, and list seems to go on a bit too long! I recently found a new GP accepting new patients so was on the phone PDQ to get a “meet & greet”. Of course, being a RN, I went prepared with all my medications listed with doses and frequencies as well as a list of all my specialist Drs that I see for x, y, & z. Za, & others PRN. ? Of course, first question was, “do you take any medication?”

Me: I sure do and here is the list along with all my Drs/specialist ( it was a full page typed out on WORD doc.  It would not be complete with out family history and present medical history…At the end of the visit I had to know, :So, you game to take me on??”. I’m still there, so its all good.

You’re probably thing this has nothing to do with photography, well , yes, it does. Let me explain. My usual life is taken up with varying degrees of reality, keeping myself on track with many different aspects ( of course keeping in mind all the dos’& don’ts, etc. and then at work I do exactly the same for the many people I see for their chronic disease management. I’ve often thought that their lives, their stories/experiences could be so well documented with out a word by photos rather. Similar to the “People of New York” that is popular, we could make our own Photobook: the People Close to Our Hearts and Souls.

Of course, photography is not ever considered during health matters as this usually is because the person has hit a rough patch in life and has lost hope, become depressed or overwhelmed, burned out, etc. I think that seeing the “reality” of people where they are makes them better understood and lets us as clinics have a brief glimpse into their lives which we are trying to help with and change. We all know change is always a tough thing because very often we have to look at OURSELVES and see if there is something that we can be doing differently. Do we/I know about my patients: their lifes, jobs? children, sandwich generation? poverty, poor reading/writing, where they live, etc??

Photography is so powerful in showing emotions, every day activities, general community activity and the people that life there.

 

 

Watching the Wheels…

Watching the wheels churn, which applies figuratively to many things in life. There is the daily grind, the wheel of health, the wheel of public policy, and so on. For those of us with chronic diseases, we have our own “wheel” and this is imbedded in the health care system. Due to the fact that many  diseases need constant monitoring can make you feel like your forever seeing Drs, RNs, dieticians, more Drs and having more and more tests. When you have CKD like myself, there are so many things they want to keep track of: creatinine levels, blood counts/anemia, bone health, Magnesium, calcium levels, phosphates, albumin in blood and urine, plus the numerous special testing they need to do to judge your antibody levels in the transplant work up just to name a few. Then, if you’re real lucky, you will have other diseases that compound this process which necessitates more medications, adjustments, more testing, more treatments which then spits you into a new regime of follow up. It just seem endless!

I remember looking at my calendar one month and I think EVERY day off I had from work I was seeing different Drs, having blood work, or having a treatment in hospital. No wonder I was ready to jump off that wheel of wonderful and have a little “down time”. Crazy! It also made me think of my Dad: he was a minister in the United Church. As a kid, I remember one day walking by and looking at his appointment book. I don’t remember any empty spaces in it for an entire month!! It makes me think of how we just trundle along, doing what we do, not really thinking about the big picture. For me, during the rough patches, I would have to just go one day at a time for to look beyond that, was just too overwhelming. You start to micro-manage and compartmentalize your life.

I just watched a movie trailer called “The Abundance Factor”. The movie brought to light many truths about the lives we chose and what power really do have. The main theme appeared to be that life is what you make it, starting with what you say to yourself every day! So its all in your head!! I’ve always said that attitude is the thing in life that will either serve you well or not. The movie also pointed out that maybe the “norm” is not for you (they talked about the societal belief that you went to school, got high marks so you could get a good job, make good money, etc, etc) and that maybe your happiness doesn’t lie in working yourself and stressing about things that don’t make you happy. This of course doesn’t mean you should caution to the wind and abandon reasonable choices. Living with CKD (as others with other diseases) forces you to come to terms with what you really want out of your life: what is important to you. Some of us still take a while to see this…I was that generation that had it pounded into them that success and happiness are linked. Happiness and success was about achieving status, financial security (actually more than that: it wasn’t enough to be secure, but be very comfortable). Yes, it is important to have some of these means to ensure health, but as I progress in age, diseases, and hopefully wisdom, these things are not so important. That wheel of happiness is not all its cracked up to be. I’ve missed out on sleep, time with family and friends, being able to pursue hobbies like I would like, and develop more of ME.

Being in the CKD wheel also makes you want to stop the madness even if its just for a week. How fantastic it would be to go through a day with NO PILLS to take, no needle pokes, to get a full night’s sleep without stressing that you’re getting enough sleep so you will be on your game the next day at work. Extend that out to a week or even better, a month!!! What a holiday that would be. Recently, there was a change in the amount of protein that I leak through the kidneys so I had to change one of my medication doses (increase) and with that was the request to repeat my labs in a week…Yeah, that didn’t happen. First of all, “repeating my labs” means 3 tubes of blood and urine again for the umpteenth time…for what?? It is a waste of my blood, time, and the dollars  in healthcare to process all the other blood work on there that doesn’t need to be repeated. If they are concerned that I might lose too much potassium, well, I know what that feels like so would just eat a banana or orange or two. No this isn’t optimal and certainly NOT what I would advise a patient, but this is me. I will do the labs, but not for a couple more weeks when I go back to see nephrology in follow up. I just get tired of having to schedule my time and life around lab appointments, work, fun, Dr visits, etc.  I just want to be normal and live the good life!

self portrait one

Home.

You hear the word home and you conjure up some sort of image, but not just an image, there is a feeling that accompanies that image. It is rooted deep down: for most, this is a good feeling. Warmth, laughter, memories, foods, traditions, fights, make-ups and the lot of it! You speak to people in the later years, and they will say, when it is their time to die, they would prefer to die at home.

If you have ever spent any quality time in a hospital or emergency department, you will definitely understand. When you have a chronic disease, like CKD, you spend a lot of time at hospitals and clinics, outpatient departments, labs and diagnostic imaging locations. The hospitals become your second home. No, you don’t have your favorite pillow, and you can’t just wander out to the kitchen when you want to grab a bite of something you’re craving; BUT, when you are really sick, that is the place to be. You know you will be cared for and looked after. You get to know the nurses, other regulars, that you see often and there is a certain comfort and peace when there, even relief!

I tend to be quite adamant about NOT going to the ER or to a hospital. When you are chronically sick, it is just a degree of that sickness that is the variant. Are you really that sick that you need to go to ER to be “processed”, banded, slotted into a cubby with a curtain and be exposed to numerous tests, various Drs, nurses, etc. doing their best to make sure they didn’t miss anything and you are getting “the best care”. Most of the time, I think not. My family on the other hand, have other thoughts. I’m not sure if they just feel helpless in being able to help with whatever “event” is happening, or maybe they just need a break from it all and could do with a night or two of no worries. I get that. Being the spouse or child or any family member takes its toll.  Caregiver burden is a term that is used and not attended to as well as it should, but that is another topic!  I must admit, sometimes, they were right and I reluctantly agreed to go.

Getting into that system is sometimes futile. On one occasion, I balked at hospital policy, even though I knew exactly what was happening, why the nurses were doing what they were doing, but I still thought; “would someone just think and use some common sense here??”. I had already been in hospital for several days, they had run every test possible I think, and some took a while to come back. On day 4 or 5, they received word that one of my tests had come back positive for a particular bacteria which is contagious…Up until that moment I had been in a double room, had received empirical antibiotic therapy (meaning they treat without knowing what you have with the hopes of covering most of the suspect bugs), I was totally asymptomatic, but I was told that I was being moved into isolation. I did share with the nurse that the Dr had just been in and said I was to be discharged, and that she should just delay that policy move for another hour or so, because I would be gone and then housekeeping would only have to clean one room instead of two. But alas, that was not to be, hospital policy wins the day! Into isolation I go, just to sit down long enough to get my discharged plan, take my IV out and leave. Waste.

However, another time, I was actually living out a dream, a “bucket list” item shall we say when I became  very ill and actually said to my husband: “You need to get me home”!. We were in Costa Rica, having a fantastic holiday, when I started to have fever, severe abdominal pain, and diarrhea. Just earlier that day I had been hiking up the volcano, but come evening, it was a different story! I knew it was serious because my “usual” remedies were not touching this thing, even the antibiotics! When I get a fever, I know its bad being immunosuppressed. My poor husband was under a tremendous amount of stress. We were in a 3rd world country, with a “health care system” that closed the doors at 8pm, regardless of what your needs. I was thankful that at least I was able to get a couple of liters of IV fluids into me over 2 days, I think that was the only thing that saved me. As I layed in our hotel room rolling in pain, forcibly sipping fluids at my dear husbands constant plea, I truly thought I was going to die. I thought to myself, well, at least I made it to Costa Rica, and if this is going to be it, at least I am warm and have a great view of the volcano. It seemed like an eternity, but my husband finally found someone that spoke and understood enough English to help him arrange for us to get transport to the nearest airport and fly home. He is my hero and I will always be very grateful of the stress and strain he took during those two days! I look back on that journey back home and wonder how I made it, especially flying economy!

We were not home long, when I said, you need to take me to the hospital. I was so sick I knew that was the best place to be. I was never so relieved and happy to be in hospital as I was that time. When they ran all their tests and poked and prodded enough, I found out I was pretty sick: hemoglobin was way down again, my magnesium was too low, was dehydrated to the point where my kidney had gone into acute failure again! I wasn’t surprised: my legs and feet were quite swollen again and made moving/walking quite difficult and painful, just like when I was first diagnosed. The feeling when the nurses started to buzz around starting IVs, putting in a catheter, hooking me up to all the wonderful machines that go beep and sound alarms, was totally welcomed and  it felt good to be home.

Even though the hospital is not truly home, that same feeling of security, warmth, peace, and being cared for were the same. Home is more that that place we rest our heads, it is a place to retreat to, feel safe, feel warm, feel loved, understood and be surrounded by those we treasure. Home is where we face storms, suss out trials, tribulations, seek the comforting words or touch of a loved one. There are many expressions, songs and quotes about home, some even ponder the concept of home as being a person and not a place at all. I can understand that, I get that. For no matter which home I am in, the sense of the caring and understanding goes a long way to making me feel at home.

Home is where the heart can laugh without shyness.  Home is where the heart’s tears can dry at their own pace. 
Vernon Baker

Faith, Hope, and Questions

Have faith they say, have hope, never give up they say… Humans can only handle so much until they break, or at least crumble a little. I was brought up in a Christian home, my mother being the “glue” that held the family together. Then, one day my father decided, ” I’m going to go back to University and be a minister”! What? You go from globe trotting with the RCAF, to Saskatchewan, to settle into theological studies, while we have to move a very small town (hamlet?) from Edmonton. So, we as a family, had faith: faith that he would successfully complete his studies while ministering to a small rural congregation, Of course, looking back, I don’t know whether faith had much to do with it on my part, or my siblings, as we were along for the ride so to speak. I think I was going into grade 4.

So, not only are we moving from a large city to a very small “speck of dust” on the prairies, but I was now going to be a “preacher’s kid”. Double whammy! With this new role, I was expected to “tow the line” and be a good girl. There were no questions about whether you were going to church on Sundays, because you were. I remember when I was about 10 years old and wanted to take a stand: I said I was NOT going to church! To my surprise, my father and mother didn’t object, they just got themselves together and off they went. I think they knew that I would arrive at the church, just in time for the service to start and to see my father looking at me with a big grin! He knew what was embedded in my heart: it just felt so wrong not to be there with my family: so much for rebellion.

So it goes, I was always the “good girl”, never made trouble, studied hard all the time, got ticked off in grade 6 when my group mates didn’t hold up their end of the project (remember I am type A personality with a touch of OCD: my teacher actually spoke to my mother to ask if I had hobbies meaning I was too intense? for grade 6? not sure), and of course, the basics of Christianity were firmly planted by this time.

Being a Christian has expectations attached to it, just as my father gave me the will to chose to come to church or not, Christian foundations also influence your choices. So, being diagnosed with CKD is a major adjustment and needs some faith and hope to get through some of these days. This doesn’t mean I didn’t question, because I have. The classic question of “Why me?” becomes, “Why not me?”. It’s a hard pill to swallow and you question what kind of God just lets these things happen (especially to me, after all I was a good girl my whole life). You’re told there is a grand plan and that we may not even know what it is! There is an element of hopelessness about that, basically admitting you are powerless over your life and God is in the driver’s seat. Being human, being an A personality, that causes conflict. The frustrating part is that you never really get answers, in the end you try to get some peace out of your situations and perhaps use what you go through to be of benefit to others. I must say, that becomes more difficult as the complications keep rolling in: long term steroid use has made me diabetic now, this same medication has given me “bacterial overgrowth” in the bowels, as well as having osteoporosis due to the CKD making me dependant on medications that are given via IV every few months. Then to top it all off, during investigating the constant bowels problems, I am the lucky genetic winner with getting another diagnosis of hemochromatosis! Normally, this isn’t such a bad thing because the treatment is basically donating blood every so often to bring your ferritin levels down in your blood. Me? I’m not so straight forward: having CKD, means chronic anemia, which means they can’t just take a pint and call it a day. I have to do chelation every night or risk getting liver damage/failure. Well, isn’t that he icing on the cake!

When I was presented with this new diagnosis, and the treatment of choice:  which is iron chelation, it was a brand new world. The three specialists that I see regularly to monitor all this are a hematologist, my nephrologist, and now an internist that deals with liver disease. The kicker is that we are running this with no “data” to back up, as this is normally not to be given to anyone with poor kidney function and has never been done. The main problem being the fact that the “cure” for the hemochromatosis was a treatment that could potentially put me into overt renal failure! Let me tell you, I agonized and questioned and prayed and had a couple melt downs. I did the nursing thing and researched it all: wrong move, because that just made me more afraid and worried. In the end, it was a question of having faith and just doing it! I did not have faith for several months while I pondered this. Then one of my Dr’s put it in another way: either I go into liver failure and kidney failure, or we treat the hemochromatosis and hopefully save the liver. I did pray that this was the right thing and that it was now in His hands, let the chips fall.

Doubt: absolutely! Blind faith, I’m afraid not. I hope, I pray, and I try to keep going and be that “good girl”. It’s tough just handing things over to God and actually letting go. The times I have done it, there has always been a sense of peace that comes over me like a blanket. It is said that the Lord doesn’t give us anymore than we can handle, but does he need to push it to the limit?? Even when you try to make peace with it all, there remains nagging doubt deep down: that thought that what if nothing of this really matters? This question then takes me back to the ol’ philosophical existence question: “Why am I here?” What is my place in this world? Am I doing any good? Some days these questions are more pressing than others which fosters a need to delve into life, it’s meaning, and all that good stuff.

I guess in the end, it is the daily or hourly choices we make that hopefully provide us with some peace, some dignity, and some quality of life.  More and more, as I get older and deal with these forks in the road, the trials, the tribulations, it is my spirituality that I seek to give me comfort. However, there are times when I need to feel the human touch and a warm body to cling to.

 

couple hugging

 

Yeah! Its the hamster dance!

 

Do you remember the “Hamster Dance”, that little ditty? You may remember it because  your daughter danced to this and you giggle and smile because of the memories you have or perhaps you just remember it is an annoying song: either way you remember it. The same way we remember or visualize the hamster in the clear ball, running around for our amusement on the floor bumping into various objects, just to pause and go in another direction. This leads me to the elaborate hamster habitats that had the colorful tubes that connected with the clear spheres where the hamster could sit and look out. So what does this have to do with chronic diseases like CKD? Sometimes I feel like that hamster. Let me explain.

I think of my life with CKD as living in the hamster habitat: you are travelling down a tunnel enjoying the sights and anticipating what is ahead. Next thing you know, you are faced with a fork in the road: you are told you have a chronic disease which will include dialysis and or transplantation. Not only that, but within this, as it is part and parcel of the management of the disease, you will be subject to numerous blood tests, ultrasounds, biopsies, CTs, surgeries, and complications. This is of course meant to keep you well and give you the best quality of life possible considering what you are facing. Having CKD is a full time job, as is any chronic disease.

So, getting back to the hamster tunnels: here you are, forced to make a decision. Of course you can default, and make no decision, which means the disease and the health care system will make the necessary decisions. You are catapulted into the system: full speed ahead. All you know is that you are too young to stop living, so you proceed with the recommendations in the hope that you garner more time, a decent quality of life and the ability to continue with your life. Of course, each decision has its pro’s and cons as you can imagine.

One of my forks was deciding to go on the transplant list or not. Well, hell ya! Not too many people want to stay on dialysis or have dialysis if they can avoid it. I was very fortunate, I bypassed dialysis by about a week. We were just making plans to have the surgery for the fistula for dialysis, but I got the call! I remember it well, as I was in school with my daughter, helping in the classroom, when my cell rang. For those of you that have gone through this process, you know the feeling when you are waiting for that call. Every time the phone rings you wonder it this is it. I distinctly remember them asking me if I still wanted the kidney: of course I said yes. In retrospect, I wonder how many say no and why. Actually, I can understand why you may say no, as with any treatment there are pro’s and cons like I mentioned. With transplantation comes a whole new routine and a new set of game plans. Yes, it gives you a chance at a second life, but it comes with a price. Immunosuppression: that is one thing, you are now more susceptible to things that would normally be a few days of down time, but may land you in the hospital. Skin cancer, that’s another one as well as forever taking the required meds, getting blood tests, getting therapies for bone disease, etc. You’re second home is the hospital.

However, in all this, you meet some amazing people. When I was having some problems with my bone marrow (apparently it took a holiday and stopped working for a while) it required having transfusions: several. When you’d check in for your top up, there was always at least 4 others sitting there being transfused as well. You all have that “knowing” nod or smile. You assume your position, you automatically get that warm blanket which is as close to heaven as you can get you’re hemoglobin is 65! You feel like crap, you look like crap, and you are actually happy to be there. Its like when I got my transplant, the first thing I noticed when I woke post-op was that I felt warm!! Well, the same with transfusions: you feel better, warmer, and things like walking are no longer an effort. While sitting there, you usually converse a bit with the others, hear their stories. I always come away with a feeling of being fortunate, as there are always those that are fighting even worse battles.

Back to the hamster trails: so, you make a choice and off you go. You settle into your new life, make appointments for you blood work, add all your doctors appointments and their required testing routine, you live your life. During you travels through the habitat, you encounter those little clear plastic balls where you can sit and look out or hunker down, curl up and nap. To me, sitting inside and not being able to take part in something because you are just too wasted or feel nauseated, or your potassium is too high, or whatever, you watch the world go by. For me, this is hard. I have this desire and longing inside me to do things, experience things/people/events. After all, that is what life is for, right? Life is for the living right? Yes, but I have come to realize I have to somehow come to terms with this beast and its limitations. This is a difficult task. I so love to try new things, learn, explore and just “be there” to take in the sights, sounds, and the energies. I feel alive.

And, so it goes. I will keep travelling these tunnels and hope that there aren’t too many more forks and with the hopes of some new adventures yet to come. Maybe not the same kind I’m used to, but something new or something meaningful. More and more, that is what life is about. Life is for the living…Let’s just do it! Happy trails!

habitraillargephoto-1

 

 

 

Life is for living.

Life is for the living. Absolutely. I don’t know about others, but I know when I was told I had chronic kidney disease I thought I could manage with the help of the Drs and by following all “the rules”.  In the early period, I was in hospital for about 2 1/2 months. I remember being very weak, very edematous, had lost muscle mass because of the amount of protein I had lost through the kidneys. I remember having to take a large dose of prednisone because that was the treatment for gross proteinuria. In case you are not aware, prednisone is a catabolic steroid, which means it “breaks down” things in your body. You are also left with the ol’ “moon face” look which is not too becoming: think puffy face, abdomen that looks pregnant, arms that look like sticks, and legs that are so swollen walking is a real effort and your feet are painful. There is so much fluid in your body that you can’t even finish a sentence without being short of breath.

I had gone from a healthy, young new mom and capable RN used to caring for others (helping them out of bed, helping them off the toilet, helping them wash and dress) to being one of them. “Them” meaning those that needed care and help, those too weak or too sick to manage on their own. How wrong did that feel?? This was the first time I thought I might die. I remember laying in my hospital bed at night with tears rolling down my face and talking to God. I told him that if this was my time to die, I wasn’t too impressed given the fact that I have a little girl to raise. That little bundle of joy that I had waited and longed for, may not be mine to raise. “If this is your will, you suck!” Yup, I said it: in the dark, alone, scared and struggling to breath.

All of this transpired over a short three weeks. I remember thinking: ” damn it! I made it through an entire pregnancy with no stretch marks!” Now, in three weeks, I had gained enough fluid to necessitate the wearing of maternity clothes again. I guess that was a bit of a blessing, because when I went out, people just automatically thought I was pregnant and would smile at me…little did they know I was in a battle. When I went home, I was determined to look after myself and my new baby girl! Even though it would take me at least half an hour to shower and get dressed, I was determined to do it. I had to sit in the shower, and washing my hair was a real effort and I easily tired and was short of breath. I had to lay on the bathroom floor for a while after the shower to recoup before dressing. Quite the change for something we take for granted and it being such a basic need. But it did give me insight into how my patients feel when they are totally vulnerable while I assist them to get showed/bathed and dressed.

Ah but for the love of family and friends! When my feet were so swollen that I couldn’t wear any of my shoes, a friend and fellow RN brought me these wonderful knit slippers which a remember with fondness, appreciation and love. My mom travelled to my home to help care for my daughter, as she was one year and I was still too weak to pick her up.

moon face-1

You just can’t get through something like this without the support and love of friends and family. It is with their caring and love that I am able to have a somewhat “normal” life and have the privilege of living life to the best of my abilities. I have been fortunate to stay in shape, eat the right foods (for the most part…), manage my job, family, social life, and even travel to many wonderful places on this planet. But, trying to live life to the fullest takes its toll. Above all, we have to remember that this chronic disease we are battling, is also a battle that our friends and family share with us. They are affected as well. As the saying and song goes: No man is an island.

No matter how good or bad you think your life is, wake up and be thankful for life: Someone somewhere is fighting to survive.”

 

 

 

Understanding.

Understanding, what does that really mean? I actually looked it up just out of curiosity because everyone knows what it means to “understand” something or someone, right? Maybe not. Here is a definition from a dictionary: “the ability to understand something; comprehend”. Yup, that sounds right. However, when I looked at this my immediate thought was that there IS a difference between understanding and comprehending. In retrospect, when I was first diagnosed with kidney disease ( being at the hospital with a nephrologist who gave me the facts, after all, I was a RN and was capable of understanding), I took the new information in. Yes, I understood all about chronic kidney disease, I knew about the difficulties, the need for dialysis and/or transplantation, the need for monitoring, for special diets, fluid restrictions, etc. The big question was; did I comprehend it??? Thinking back, I would have to say no.

I am not sure to this day whether being a RN is a benefit or a burden. Knowing all the details, the pathophysiology, knowing about the need and complications with various treatments, etc is a two edged sword. As you can imagine, your cognition takes over your actual comprehension.  When I think about understanding vs comprehension, I think the understanding comes from the realm of pure cognition, the factual knowledge. Whereas, comprehension emanates from the heart and soul. I now understand and comprehend what it is to have chronic kidney disease, but that is only during this past week. You might ask why only now?? I was diagnosed in 1992.

I recently went to see a counsellor because of all the various emotions I was having regarding “living the life”: I was having difficulty trying to stay “normal”. My personality is one in which I am very driven and determined. Don’t tell me I can’t do something, because I will prove you wrong, not matter what the cost to me. Whenever I set out to learn something, I like to know it. The same with my new diagnosis back in 1992, a year after the birth of my beautiful daughter and only a few years after graduating from nursing. That is when my battle with staying normal and living the life began. I was 27 years old.

I was juggling new roles with motherhood and being a step mom to two boys, a fairly new RN while settling into a new community not so long ago. But one day I broke: I was feeling not so perky. Being a RN I was able to review my lab work with my Dr, not as a patient, but as a RN: analytically. I said to my Dr, I don’t understand why I feel so crappy: my potassium if normal, my creatinine was stable with a decent estimated glomerular filtration rate, my hemoglobin was decent???? He looked me in the eye (now this a Dr that I also worked with) and said to me: Loretta, you have chronic kidney disease, you can’t expect to control each thing and feel fine, it is more that that. Oh my God, the understanding and the comprehension just collided head on! This was the first time I cried.

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
Elisabeth Kübler-Ross

What I do know and appreciate about my journey is the understanding, the empathy, the appreciation and sensitivity I have gained through going through so many battles with my health, that it has made me a better nurse! I truly understand & comprehend what it is to live with a chronic disease. Be kind to each other.

 

Living the Life!

” Strength does not come from winning. Your struggles develop your strengths.  When you go through hardships and decide not to surrender, this is strength.” Arnold Schwarzenegger

Strength, hardships, decisions leading to surrendering  or living the life??

I have started this blog with the intent of working through some grief (just found out this from a session with a counsellor) which stems from me trying to “live the life” of a normal person, when clearly, I am not really normal. No, I’m not some lunatic…I am a mother, a registered nurse, a daughter,a wife,  a friend, a sibling, and I live with chronic kidney disease among other chronic health problems. While I try to live a normal life, it has become increasingly difficult and wearing. This blog will be my experiences, thoughts, feelings and adventures in this crazy world! Come along for the journey if you have the courage.