I'm here in Seattle for the Annual Dialysis Conference. I absolutely love Northwest Washington. I am eating salmon every chance I get, salmon breakfast burrito, salmon taco, salmon en croute with lemon herb sauce, salmon milkshake (kidding). And, did I mention the
coffee? I'm trying to sample them all before I head home. I'm planning to take a cruise of Elliott Bay in a couple of hours. It is sunny and 60 and I can't wait. Unfortunately the Kurt exhibit at the
Seattle Art Museum won't start until May.
The last time I was here was about ten years ago. I flew into Sea-Tac with Andria and our eighteen month old Jacob. We spent a few hours, had lunch at the Needle, then headed on to Vancouver for a Watershed Conference. I believe that was the last conference at which I gave a professional paper before kidney disease changed my course.
Well, I'm back in this part of the country to present another professional paper. This time it will be to nurses and medical doctors instead of resource planners, riverine morphologists, GIS specialists, and biologists. I feel fortunate that I have this opportunity to continue doing what I love to do - sharing information with others. This time though I don't have a cutting edge watershed planning tool to unveil, rather just my simple story of how we need to be the leader of our own medical team. The paper is entitled, The Patient as Captain of his Team: Dialyze for the Prize. The last time I gave this paper I had an hour and a captive audience of 150 people. On Monday I will be the eighth speaker in the first of a many two hour concurrent sessions. I figure that gives me eight minutes, tops and perhaps an audience of ten. Luckily, I brought a hand out. If worse comes to worse, I can stand and say, "Good morning, my name is Erich Ditschman, enjoy the handout, and, the coffee break is being served to the left when you exist. If you leave now, you will be first in line." Here it is, I hope you enjoy it.
The Patient as Captain of his Team
Dialyzing for the Prize
30th Annual Dialysis Conference
Outline
By
Erich P. Ditschman
http://paddlingondialysisforkidneyhealth.blogspot.com
- Objectives With this talk I hope to:
- Encourage you to empower your patient to be the leader of her healthcare team.
- Inspire you to not under estimate the intelligence of your patient.
- Promote you to provide continuing education to your patient so that she has the proper information to make leadership decisions.
- Help you to understand that each day your actions will either help us to lead a happy and meaningful life or not.
- Premise is that Dialysis is the True Gift of Life. While it is certainly true that a viable kidney transplant can greatly improve one's life and outcome with end-stage renal disease, dialysis, in most cases will keep one from being dead. And, most importantly, that this life needs to be lead by the person sitting in the chair.
- Disclaimer Since starting dialysis in 2001, I have made many associations in the renal community and am actively involved with Dialysis Patient Citizens as a Board Member, National Kidney Foundation of Michigan as a fundraiser and on their Lansing Advisory Committee, NxStage as a member of its Advisory Council, and Greenfield as a patient. My comments are wholly my own. Today, I will make some sweeping generalizations and know that they are just that. For every example I give, I know there are thousands of examples that may show the complete opposite of my experience. So with that, here we go.
- Help – In the words of two great English philosopher poets as interpreted in William Shatner tradition:
Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.
And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.
Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me?
Frequently, patients reach dialysis without time to prepare a dialysis plan of action. Many, like me, crash into dialysis. They are afraid and upset realizing that life as they knew it no longer exists. In this fragile and susceptible state, they accept what options they are provided.
- Patient – from Merriam Online Dictionary we find that a patient is an in an individual awaiting or under medical care and treatment, one that is acted upon.
When we are done today, I hope that you will see that the person in the chair is someone who has made it through life until this point without your help. Someone, who is capable of making important decisions if given appropriate information and guidance. Someone, who should be leading her medical team rather than receiving and following directions presented by all her teammates. We all have the ability to lead our lives. Along with believing it ourselves, we need others to believe in our ability.
IMPORTANT POINT “Acted upon” I think that is a very true definition for many renal patients. When you go back to the clinic, please try not to act upon the person in the chair. Rather, look her in the eye and engage her in the process of the procedure that is giving her an opportunity to live.
- The patient truly is the Captain of her medical team. So let's climb aboard the good ship Dialysis and set sail for a ten minute cruise over the rocky seas of patient personification.
- The beginning of my journey Before the loss of the use of my kidneys I was a husband to my high school sweetheart, father of my one year old son, an aggressive professional at a consulting engineering firm, and a student launching into my doctoral dissertation. I felt like I had life by the horns. I was 36 and everything was finally coming together. In fact, I had been commuting up to 240 miles every other day in order to take classes in East Lansing and work full time in the Detroit area while we lived in thumb. That was reduced to twenty miles a day by moving to East Lansing. Things were looking good. Then one day I noticed my shoes were a little snug. Four months later I was incredibly sick, on dialysis and waiting to receive a new kidney from my wife so that I could get back on track with my life.
- Hold the boat - that was where I was incredibly naive. Over the next six years I had more surgeries and medical procedures than I imagined a body would survive. For me there was no, “thanks for the transplant and off to work I go.” Things got very bad. They would get a little better, but then they would get quite bad again. At the time little did I know that things would get incredibly better for me.
IMPORTANT POINT– We all live in the now and it is very difficult to see past the current situation to a better tomorrow. While we are stuck in a cloud of pain and pity we need a guiding light to help us lead ourselves to that better tomorrow. We can't just be hoisted up, carried and deposited in a better place, rather we need to travel the journey for it is only in the journey – struggling to make tough decisions that we will improve our lives - that we can reach a better place, a brighter tomorrow. You need to be our guiding light. At times we need you to shine as bright as a star on a moonless night to help us find our way, but other times we need you to be dim as a 4 Watt night light, a light of comfort on a familiar path. Your challenge is to figure out which one is needed and when and to kindly offer it.
- Dialysis
- The Choice Once we realized how quickly I was loosing my kidney function we headed to the University of Michigan. I had hoped to get a kidney before going on dialysis. Unfortunately, my function disappeared before my wife and I could undergo surgery. In high school it after a gout attack my kidneys degraded to fifty percent renal function. My failure was never diagnosed.
Except for regular visits to my nephrologist and a relatively low protein diet, I went on living a pretty normal life for the next twenty years. I struggled a year with Mysthenia Gravis in college but a thymectomy put that quickly into remission. For all the times I saw my nephrologist we never once talked about dialysis or transplant. In retrospect, I am very glad that we didn't because I didn't have to spend any time worrying about something that I had very little control over. However, when I crashed and the Physician Assistant at U of M started discussing whether I would want to do peritoneal dialysis or hemo dialysis I was shocked. Neither option had any appeal to me.
At the time, 2001, the U wasn't putting any energy into their home hemodialysis program, so peritoneal dialysis was really the only home option. I want to emphasize how patient the PA was in providing me detailed pros and cons on both procedures. I'm sure he thought none of it was getting through to me since I was looking at him with a glazed over look of disbelief.
IMPORTANT POINT – Just because a patient resembles a doe trapped by the headlight's beam in mid crossing doesn't mean it won't respond if you stop and give it time. Remember, step on the brakes and not the accelerator. Be patient, we may even need to comeback a couple of times. In the words of Liz Lemmon from 30 Rock, when we first hear about it, we think dialysis is a “deal breaker.” However, once we realize it is the only deal in town, then eventually we come around – or we die.
Eventually I too came around an opted for peritoneal dialysis. The ability to be at home was compelling, especially because of our two year old son, Jacob; even if it did mean having to have big plastic tube sticking out of my belly. Unfortunately, the uremia went rampant and I was put on immediate hemodialysis. Once that occurred, we decided to stick with the permacatheter for four months until our transplant surgery.
- It will get better Nearly ten years since my first dialysis run, I have now been associated with four different dialysis providers. In each of these associations I have been surrounded by the kindest people I have ever met. It sure seems that to be in the dialysis field is a calling that each of you take very seriously. Thank you for answering that call.
This kindness is so important especially when being introduced to the concept of being tied to a machine, potentially for the rest of your life. To the uninitiated dialysis is a bizarre world. Your kindness helps to smooth the edges.
One nurse at the U in particular kept reminding me that “it would get better.” When I contracted a staph infection sepsis gave me rigors as I sat in my chair, Kathy tucked me in with blankets and said, “it will get better.” Of course, there was no way in hell that I believed her at the time. She would repeat this mantra time and time again as I nearly fainted at the end of the run as we had difficulty finding my dry weight. And, each time I wouldn't believe her, but slowly over a number of months, she was right and things did get better. Keep reminding us that things will get better and that if we take control we can make them much better.
- Fast Forward The donated kidney from my wife, which I had named Annie - because my Nephrologist suggested I talk to it, since I guess I had nothing better to do between pharesing and dialyzing as I sat in the courtyard at the U daily for the next four weeks watching leaves slowly emerge on the trees.
Let me tell you, I got quite a few stares as I shuffled my bulbous body along the walkway saying, “Come-on Annie, you can do it, just make some pee.” Anyway, Annie shutdown immediately. Like out of a bad B-Movie, the transplant nephrologist says, “Mr. Ditschman, you have a horrible disease. It is called focal segmental glomerulosclerosis (FSGS) and we know nothing about it.” Upon hearing that, my faith in the medical community crumbled.
- Four years later I get a cadaveric kidney transplant at the University of Wisconsin and after five weeks of trying to save it, like my first, it was removed. A biopsy of the second failed transplant confirms that I have recurrent FSGS. Unfortunately there isn't an easier way to diagnose recurrent FSGS.
I think there is this generally shared myth by the healthy public that doctors and hospitals can fix most anything. Of course, you all know that is not true, but most of us once healthy folks don't get it, well not until a doctor comes in and shrugs her shoulders and says, “I got nothin.” At least for people with kidney failure we have something - dialysis and for many transplant.
IMPORTANT POINT – Kidney patients lose faith on a number of levels. It is important to help us regain some sense of faith in the medical community. This can be done by helping us to achieve optimal health on dialysis. Give us fair and unbiased information on all dialysis modalities available in a geographic region, not just available at your center. Give us training in in-center self care and have patience while we work to master self cannulation or setting up our machine. Help us to understand that the more control we regain the better we are going to feel – physically and mentally.
- In-center Well with that information, I moved on to in-center dialysis. A dialysis center is a scary place. There are sick people everywhere. There are people buried under blankets. People moaning and calling for a nurse. There are people well, I am not telling you something you don't know. I just find dialysis centers as they are currently configured as a difficult place to feel well. Don't get me wrong, I'm glad we have them, just as a 36 years young professional, I was not prepared for the mind numbing roller coaster that is in-center dialysis. Of course, until you try another modality it is all that you know so you adapt and persevere.
IMPORTANT NOTE – Just because we stopped complaining doesn't mean we don't want better health. In many cases we have adapted to the only thing we know as an act of self-preservation. We need help to understand that more control will make our lives better.
For the next four years I stuck with the U of M even though I lived in East Lansing. I was under some delusional idea that if I stayed at the U, this great medical research institution, where I was again on the list, that I would still be able to successfully return to the life I once lead. I was in total denial.
While I was there, the U resurrected it's home hemodialysis program and my wife and I quickly became candidates to go home. During our training the U was kind enough to install an RO unit and a full size traditional dialysis machine in our little den.
This was a blessing and a curse. I received the blessing, dialyzing in the comfort of my own home and my wife received the curse – setting up the machine, getting me on, watching our then 3 year old son, Jacob, monitoring me, making dinner and breaking down the machine and disinfecting it.
IMPORTANT POINT – At this point I was still feeling fully like a patient (an individual awaiting or under medical care and treatment). I was not mentally nor physically prepared to take responsibility for my treatment. I wanted to be acted-upon. Just like in-center, I looked away and grimaced as my wife cannulated me. The burden of my care had been transferred from the professionals at the U and placed squarely on my wife who had recently had to go back to work as an attorney to help us make ends meet. You need to promote in-center self care as the first step in helping a patient realize that she can be the Captain of her team.
- Nephrology News and web based research. Depending on the doctor, information surrounding a kidney disease patient's condition and treatment, seems to be given out in teaspoon doses. Just enough for a patient to swallow without choking on it. Unfortunately, when you end up with a chronic disease that changes your life forever this is not enough. A teaspoon worth of knowledge is not going to fortify one adequately to take control.
Patients need to know there is a vast array of information available which will help them to take better control of improving their quality of life on dialysis. This is not a one time effort, remind patients that these resources exist. Hand fliers to us. Ask us if we've read the latest edition of Nephrology News and Issues. Have it in your lobby. Each time we sit in our chair you can be a conduit to help us take more control of our disease.
While on home hemodialysis with the traditional dialysis machine, Andria and I found research studies that indicated that more frequent dialysis would make me feel better and keep me alive longer. Since we had all the equipment at home it seemed like a no brainer.
BAM! With that simple thought we entered the world of bureaucratic obstacles. Perhaps the seed of independence was starting to sprout, the seed that sent us home in the first place, but we just couldn't take “no” for an answer. The U Medical Director was steadfast in maintaining that we could only use three dialyzors a week despite the mounting medical evidence that more frequent dialysis who give me a better outcome. At the time we knew little about medicare reimbursement, but we offered to pay for a couple of extra dialyzors so that I could dialyze five times a week. Hell, we were doing the all the work, we just needed two more dialyzors. The heated discussions that we had with the Medical Director who was also my nephrologist were disconcerting. They flew in the face of conventions which implied that we should be good patients and do what our doctors tell us to do. How can we do that when we knew I might be able to see my son graduate high school with a little more dialysis. I suppose when mortality stares you in the face, you either wake up and smell the coffee or ask for a fifth of Jim Beam and go back to the couch. I poured a triple espresso and didn't look back to see if the Grim Reaper was in quick pursuit.
After a time, the Medical Director relented and I was able to dialyze five times a week. Of course, this took up a tremendous amount of time. During this period I attempted on numerous occasions to go back to work, but due to complicating issues, like undergoing a nephrectomy, multiple fistula surgeries and a partial parathyroidectomy, I eventually came to the conclusion that I would have to go on permanent medical disability. The once tightly held vision that I would get my transplant and be back to work in a few short months had disappeared for good.
- Peritoneal Dialysis - With me being on permanent disability, my wife stepped up her part-time job to full-time. Now with her working full time and me feeling a bit more stable, I was finally able to see what a burden I placed on her by doing home-hemodiaylsis with a traditional dialysis machine. I knew she couldn't continue working full time, taking care our son and dialyzing me five times a week. So, I got a tenckhoff catheter placed in my abdomen and started training for peritoneal dialysis. I'll be brief here. PD is an excellent modality and more people with kidney failure should be encouraged to use it. However, for me it didn't work.
When your patient runs on the machine for eight hours a night and then has to perform at least two manual exchanges, that is a clue that PD may not be the best option. Now, I was able to perform most of it myself and was able to take care of my son, but it took a tremendous amount of work. The other night my son said, “Dad remember when you use to hang your dialysate in the car window?” He had a point I certainly could travel. And, one more extremely important point, my wife and I adopted our daughter, Antonia, from birth while I was on PD.
VERY IMPORTANT POINT – Share stories of empowerment with your patients. I was on dialysis and not even in the kind of shape that you see me now and we didn't stop living. We had always gone to Disney World, both while I was on in-center and on PD. It is easy to do PD in the first aid room. We even took my son to Jamaica while I was on PD. Most importantly, we adopted our daughter while I was on dialysis. We were able to continue to grow our family, to give Andria a little girl, to give Jacob a sister, and to give me my princess. I know you all have to deal with your own trials and tribulations of everyday life, but when you step up to that chair be positive, be empowering.
Over the next two years I gained sixty pounds due to a heavy diet of 4.25% dialysate. It was like having your cake without the advantage of tasting it. I also managed to break one foot each spring. Both of these were signs that maybe PD wasn't working for me.
- Back to In-Center After the 2005 failed cadaveric transplant I switched to in-center in Lansing. It had become apparent to me that I was going to be on dialysis the rest of my life and dialyzing at the U wasn't going to change that. I found a local nephrologist, Fareha Kazi and she enrolled me in the only dialysis clinic in Lansing at the time. Dr. Kazi had been one of the Fellows back at the U when I was first transplanted. For the next year we got to know each other as she visited me once a week in-center.
I had known about home-hemodialysis and had even bought some stock in Aksys but because the Lansing clinic wasn't offering home-hemodialysis, I didn't think it was available to me.
Then one day I read about NxStage's System One in Nephrology News and Issues. I checked out the website and before long someone called to tell me that the nearest provider was a clinic in Flint. I called up and by April of 2006 I was training on the System One for short term daily hemodialysis.
- On being the Captain – One aspect of being the Captain is that you have to have a willing crew and a top flight First Officer. You need someone you can trust so that when you say, “Make it so, Number One,” there is a steadfast William Riker to properly execute the command. This is the crux of my discussion. The person in the chair is the Captain. Not the doctor, not the nurse nor technician, not the social worker and not the dietician. In my case, Dr. Kazi has been a wonderful First Mate. Sounds weird doesn't it? The doctor is my first mate. It goes against our historically patriarchal medical traditions. But, it is so empowering to the patient. I realize not everyone comes to the chair equipped with leadership abilities, but this is where you can help. If you leave here thinking that the patient is the Captain then the next time you see her you may be more inclined to help her increase her leadership capabilities and to take more control of the quality of her health and life. For many patients, this will require many baby steps and extreme patience. But just because it is difficult doesn't mean that it should not be done.
O.k. if I haven't shocked you enough - then if we as patients do not have a top flight First Officer we need to fire the one we have and hire a new one. Now this may be difficult in rural areas, and it may also be difficult in urban areas where there is a strong patriarchal medical tradition. But, like with any contractor or service provider that is not meeting our needs, we need to find one that does. I'm not talking about not getting enough of what you think you might need, like Oxycontin, or Valium, Percocet. I mean getting the best medical providers to help us help ourselves optimize our healthcare and give us the best possible outcome.
- Re-credentialing Dr. Kazi trained at the University of Michigan on traditional dialysis machines. She later joined a Lansing practice that worked solely with the traditional machine dialysis clinic which was the only game in town. The clinic offered PD and only in-center traditional hemodialysis. When I told her that there was a provider in Flint which offered short term daily home hemodialysis on the NxStage System One, she readily agreed to get re credentialed and did. My nephrologist knew that I could get a better outcome on a more frequent home modality and “made it so.” Incidentally three years later, the Flint provider opened an At Home Clinic offering the NxStage System One in Lansing and to the Mid-Michigan dialysis community. Others in her practice are now actively referring patients. Home hemodialysis would have come eventually to Mid-Michigan, but because one patient, the Captain of his team, sought out a better quality of life on dialysis, it came sooner than later.
She would three years later, be re-credentialed again so that I could switch to Greenfield Health Systems which is the only provider in Michigan offering frequent nocturnal hemodialysis of the NxStage System One. I have changed my crew repeatedly as I search for the best possible outcome, but I have been very fortunate to have the same First Officer by my side along the way.
- Sometime after restarting in-center dialysis I again strengthened my leadership ability. Instead of slathering EMLA cream on my bicep and cringing and staring away when the technician made the first attempts at cannulating, I did away with the cream and started to watch. I felt that enduring the brief pain of the cannulation helped me gain a little more control. It brought my focus from dream like denial to reality. It allowed me to participate rather than to ignore it. Never when I was with the Lansing Provider did anyone discuss self-care. It simply was not practiced. Later as I learned more about home hemodialysis and the buttonhole technique I shared this with my crew. At the time few had heard about the technique.
IMPORTANT POINT – Self care is a critical first step to being the Captain of your team. Encourage your patients to undergo self care. Teach them how to set up their machine. Teach them to cannulate themselves. Learn about the buttonhole technique and teach that to your patients.
- The training was going well except for one thing – cannulation. I wrote the following on my blog, Tasty Kidney Pie, not long afterward.
“The first time I had to stick, I held the surgically sharp tip with my right hand just above the bulging vein in my left bicep. I just held it there. After some time I tried to imagine my hand moving forward at the correct angle. I tried not to think about the razor sharp metal slicing layers of skin until I felt a “pop,” the feeling described to me when the needle bursts through the vein wall allowing blood to flash into the connected tubing. I was instructed that at that point I would know when to stop pushing. “But, how would I know?” “What would keep me from continuing right on through the opposite wall skewering the Triceps brachii like some tender piece of marinated tenderloin?” The answer given was that I would just know, which was comforting, not!
After a few more very long seconds of what on the outside must have looked like a Zen meditation trance but on the inside I knew what was really going on - panic and a mental image of me throwing the needle out of my hand and lifting my butt of the seat and hauling it on out of there. Instead, I took my leap of faith. I thrusted my extended fingers forward while my left big toe searched for a table leg to wrap around to calm itself all the while I silently screamed, “I do not like this “Sam I am.” I do not like big needles in my ham.” But before I could butcher any more Seuss it was over. Some magical force stopped my forward motion leaving the needle right in the middle of my vein. I sighed. My arterial bloodline was secured. After a few moments of quiet celebration I reached for another needle to secure my venous bloodline. When both lines were set and the machine was on, I leaned back into my chair exhausted but smiling. . . I had scaled the Mountain and found that my life was better for it. Six out of seven days I scale that same mountain but each day the slope flattens just a bit.”
Now four years after cannulating myself, currently with one buttonhole and one regular stick, I look back an realize I under went significant needless pain as technicians first tried to stick me and were unsuccessful, then nurses, and then finally the cannulating expert nurse. Not only did I suffer, but it wasted a significant amount of staff time. I wish I had been taught self-care when I first started dialysis.
- At Home – Short term daily dialysis with the NxStage System One as made an incredible difference to my life. My phosphorous which was always a bit difficult to control, even with a proper diet, greatly improved. My hemoglobin stabilized. My children could now sit on my lap as I dialyzed. When we traveled I no longer had to leave my family for four hours every other day and suffer through another couple of hours as I recovered from the dialysis crash. My energy level increased and I was able to be more active in my community and at my children's schools. Music again mattered to me. I found my libido, which I am sad to say that when it is lost, you really don't care. I was so grateful for this I wrote the following email,
“I'd appreciate you forwarding this brief note of thanks to Jeffrey Burbank, President of NxStage Medical. I am grateful for the System One, but, one thing that I'm really thankful for, which you don't see too often on the renal list-serves, is the return of my libido. I'm note joking here. When it is gone you don't really miss it, but when its there you wouldn't want to lose it for the world. So, Jeffrey thank you very much. By the way, I mean this in the purest sense. I married the girl who became my high school sweetheart in 1981. Anyway, you may want to pursue this angle a bit more in your marketing. Who needs Viagra when you have a NxStage instead of one of those three times a week machines? Thanks again. I think I hear my darling calling. Erich Ditschman”
By the way I received a nice response from Jeffrey.
IMPORTANT POINT – It is difficult for a patient undergoing three times a week traditional dialysis to appreciate the benefits she receives. Because the benefits often do not exceed a marginal lifestyle. It is almost impossible to convince them that doing more will make them feel better. It is difficult for a patient enduring the burden of dialysis to see that adding to this burden will make them feel so much better that they will crave more dialysis. But, once you sample it – get a taste of your old energy levels, it is addictive. I believe that many people will say that they don't mind three times a week in-center because they simple don't know anything else. Just like not missing my libido, until after I actually got it back.
The most important benefit to switching to at home hemodialysis for me has been the I have potentially given myself the gift of a longer life. I remember when I started at the U I calculated that based on the average lifespan of dialysis patients that I would be lucky to live to 55 years of age – that is a little over ten years from now. My son will hopefully be in college and my daughter will be a fifteen years old and sophomore in high school. I cannot imagine not being there for them or my high school sweetheart.
- It takes work While there are many benefits to home hemodialysis, it is not a piece of cake. We service our machines, take, load and store inventory, we sterilize and disinfect, when we travel we transport and set up our machines, owe troubleshoot problems, order supplies, we have to go to clinic which in my case is now over an hour away, we have to recycle and dispose of our waste. It is a lot of work to do home hemodialysis. Not half as much work as it was with the traditional machine, but it is work. However, it is in that work that we are taking control, that we are captaining. But feeling good is addictive and it is certainly worth it.
- As part of a Yahoo NxStage User list-serve that I co-moderated, I began to learn more about fellow patients who had switched to nocturnal home hemodialysis on the System One. Research that I read about in Nephrology News and various National Kidney Foundation peer reviewed journals began to indicate that frequent nocturnal dialysis may offer the same outcomes as those of cadaveric kidney transplants. While I'm on the list again at the U, I'm not certain I am willing to trade my stability and long term outlook for a huge dose of immunosuppressive drugs and a lengthy hospital stay without much promise for success.
- The Flint Provider opened its Lansing Clinic just as I started exploring the options of using the NxStage for nocturnal dialysis – or in the current vernacular, extended dialysis.
Unfortunately the Flint Provider was not prepared to offer extended dialysis with the System One. Again, I had to change crews to seek out a better outcome for me and my family. And again, Dr. Kazi re-credentialed herself and continued by my side.
IMPORTANT NOTE Even though my nephrologist has been an incredibly supportive First Mate, she did not offer me the changes in dialysis modality that I eventually sought out. Each time, I lead the way to better health for myself. This is why we must be the Captain's of our teams. We have our best interests always at the top of our list. We only have one patient to worry about.
- So since April I have been a patient at Greenfield Health Systems, where through frequent nocturnal dialysis I have regained a tremendous amount of my old self. I feel the best that I have since I lost the use of my kidneys nine years ago. My potassium which was still a problem using short term daily and following a strict diet is now wonderfully within limits. My energy levels have even improved over what they were with short term daily. And, best of all, I no longer have to commit 3 hours six days a week to dialyzing. I now have time to make nutritious and tasty meals for my family. I can take on more responsibility at Dialysis Patient Citizens, and under take more local volunteer opportunities. I no longer worry about whether I will see my daughter or son graduate or get married. I feel like I am living a much more normal lifestyle – of course accept for the needles in my arm and the machine next to my bed. But for the most point, I think of my System One as a glorified toilet. Just like you don't think much about flushing a toilet, I don't think much about hooking up to my System One. It is just something I use in the course of the day. In fact, I felt so good that I relinquished my duties on the NxStage Users list-serve because my days were filled with much other non dialysis activities. I no longer wanted to spend the time talking about my glorified toilet. I wanted to live my life as I once had.
- Conclusion I got to this point by being the Captain of my team. Please try to treat each of your patients as the Captain of their team. Help them develop leadership capabilities if they are scarce. Have patience with us. Teach us self care. Share information with us. Help us to lead the way to better health, to a longer life, to happier place. You can do it and continue to do it each time you see us. Your patient is the Captain of her team.
- Captain of my own boat Not only am I the Captain of my own team I am now the Captain of my own boat. 2010 will be my tenth year on dialysis.
To mark the occasion I am going to get into shape so that I can join the Grand River Expedition 2010 which will lead scientists, educators, local officials, river enthusiasts and at least one fellow on dialysis from its headwaters near Jackson, Michigan to Lake Michigan at its mouth in Grand Haven 225 miles downstream. I am also raising money for the National Kidney Foundation of Michigan.
I'm proud to say that my NKFM Walking Team, the Riverdudes, has raised over $54,000 since we started in 2001.
To celebrate my tenth year on dialysis I pledge to raise $20,000 for NKFM with your help and the help of the Riverdudes.
Prior to having my kidneys suddenly fail I was a watershed management consultant working to protect rivers and the lands that drain to them. Back then I use to talk about how we needed to preserve wetlands since they were nature's kidneys working to improve water quality and manage flow. Well now, I'm talking about human kidneys and how we need to protect them for pretty much the same reasons. The 2010 Grand River Expedition will stop in communities along the way and set up mini-river festivals. With my friends at NKFM we will join the festivals to encourage people to take good care of their kidneys and to protect wetlands too and to get out and enjoy the river. For the past ten years, I haven't done any river work, other than paddling with my ten year old son and my six year old daughter, rather I've been working with a number of groups to improve the lives of dialysis patients. When I first started river work someone who recognized me in a grocery store, shouted, "hey, Riverdude." The nickname stuck, so I'm proud to say that in 2010, the Riverdude will reenter the waters to again help protect the river and kidneys too.
