Folly of surgery and salt baths

Percy Sledge, booming from a Bluetooth speaker. Soaking in a salt bath and jamming and grooving to the classic song, Sitting on the Dock. Sun streaming in between the shutters of the slat blinds. Yes, its midday, I’m grooving and soaking and singing my heart out with Percy Sledge, I’m feeling the song and putting my best bathroom voice on thinking I’m on a stage someplace in New Orleans in a jazz bar…”sitting on the dock of the bay, watching the tide roll away…resting my bones…” Feeling great, in the groove, totally slammin’! Then, comes the whistling part: things go silent…Oh my, I can’t whistle!!! What ??!! Then it dawned on me: surgery consequences.

Last year I had a second surgery on my lower lip for skin cancer, so I am left with half a lower lip. I know when the wound was fresh, I had difficulty eating, drinking and noticed a difference in some speech, but that eventually healed and things went back to normal, or so I thought: until today. I can’t whistle. No biggy, but just another change. It’s not like I have to whistle, maybe if I was in New York and needed a cab…but I’m not. So life is good, at least I still have a bit of a lip. Downside, I can’t do those sexy lips with great lipstick, but that’s ok too because I’m not a model or a Hollywood star. Nonetheless, whenever I have to go back to dermatology, there is this dread that there will be more cancer and less and less lip…

Today I’m not stressing about it, I’m just enjoying the moment: warm salt bath and Percy Sledge. Salt baths: time to relax, reflect, soothe, and to take a brief break from the carasoul of life with CKD, skin cancer, chelation, etc. Just me and Percy rocking it out. Ahhhhh. Little piece of paradise right here at home where I can be me, I can be crazy, laugh like a lunatic, cry, or just curl up with my hubby and feel safe and warm. Salt baths are great therapy time. I am ready.

 

bath jazz

Happy Birthday!!!

So, I just celebrated my birthday on the weekend! Hooray! I made another year on the right side of the grass and still have a pretty good quality of life going! AND, it was also my transplant anniversary! I was transplanted in 1999 and was told I’d be lucky if I got 5 years out of the graft….man:  was THAT Dr. wrong! I’m so glad he was. It has enabled me to keep working, keep learning, keep loving and caring for so many people, has given me the opportunity to take up photography, meet new friends and experience so much more! Like travelling to various countries all over the world which I have experienced and loved every minute of every adventure. I have been blessed with many friends and family, I have had connections and conversations with many other patients while waiting for treatments, getting blood, getting blood work done, etc…You really begin to see how life is for many people. As a RN, it has given a great  understanding and appreciation of what my patients experience and I think it has made a better nurse and counsellor. I know there is “by the book” medicine, but sometimes the book needs a little :rewrite or edit”. After all, we are all human and we are all doing the best we can juggling our lives, family, fun, jobs all while trying to have decent quality of life! On my dying bed, I don’t want to have any regrets, or least very few.

This learning curve and process of living with CKD is a downer sometimes, but I can always look around and say, “Well, at least I don’t have that to deal with”. Everyday, with the encouragement and a few kind words, a smile, a hug, a note, a call, etc. provides a little nudge of positivity. That positivity is the key ingredient for continued hope and a promise of a better day tomorrow, or maybe just a better day today…

My Birthday was a great day! For many of the above reasons. Maybe I started the day right by attending Palm Sunday service and ended the day with love, food, laughter and some good ol’ competition with family: my rock and my strength, always.  So, here’s to Birthdays and love and family and friends that make the year ahead one with brightness and hope! CHEERS!!  stock-photo-wedding-glasses-filled-with-champagne-131961353

 

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!

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