Have you ever had a co-worker who you didn’t love but you knew you had to work with them so you try to accept them?
Well, that’s what having kidney disease is like for me. I have not met a soul who loves having kidney disease but know many like myself who try to embrace it and I do mean try. I have met a lot of people along my journey and throughout different stages of their disease. Many of you know that kidney disease changes your entire world and perspective on life. For me, as a patient learning about the disease and how it affects my body helps me to understand and manage it better. Although I have had kidney disease for more than 20 years and believe it or not we still aren’t in love and we may not get there. However, I have a greater appreciation of who I am and who I have become as a result of my kidney disease.
Kidney disease is not a death sentence by any means but rather a new way of living so you can get back to what you enjoy doing in life. It’s adjusting to the new normal that will take some time.
I never classified myself as being sick. It wasn’t until my first transplanted kidney began to fail in July of 2010 when I said to my husband Rodney, I think I’m sick. It may sound funny to you because it was kind of funny to me. But I was used to taking my meds, getting lab work done and going to my appointments. I figured I was really no different from anyone else– because whether it’s an illness or addiction we all have something.
My something just happens to be kidney disease. I was living in my new normal. Being transplanted is just anther form of renal replacement therapy; it doesn’t cure you of kidney disease. You still have to learn to adjust and embrace that you have the disease and you must choose to make the best of it.
It’s not easy… I didn’t get this happy about having kidney disease overnight. However, with the right team of doctors, health care professionals, family and friends I was able to get through it like so many others have. Adjusting to the new normal doesn’t mean that things will be like they used to, it means that there are limitations but also new ways of doing things and finding that inner strength to want to move forward.
Taking responsibility for the steps necessary to live life as optimally as possible with the limits I’m faced with is challenging. Getting back to really living so that I was able to enjoy what I was doing in life was important. I attribute being engaged in my healthcare needs helping me to want to do better in taking care of myself. I can attest that being positive has a lot to do with being able to accept my new normal.
Today, I love my kidney and treat it with love each day and I have learned to embrace my disease.
If you asked me if I was an engaged patient I would tell you yes. I can tell you what my last lab values are; I am compliant with taking my medications and see my doctors on a regular basis. I consider myself to be a responsible patient who is closely involved in my healthcare needs.
I haven’t always been active in my care or engaged as a patient. In the beginning, I was in a state of denial and was convinced my doctor had it wrong. Over the years, I have learned to live with my special attribute of having CKD. There comes a point where you have to make a choice of how you want to live the rest of your life. I chose to do just that, live my life.
I have had the opportunity to speak with many patients and professionals in the kidney community about kidney disease. I have found that some professionals find it difficult to engage patients in being more involved with their care. I also find patients aren’t always engaged for a number of reasons that range from depression, anger or lack of knowledge.
In my experience, I have realized that collaborative care is an effective way to have better patient outcomes. Being a decision the maker in your healthcare needs is paramount. As a patient, you should not feel rushed into making a decision and be able to share your perspective with your physician. I make sure that my nephrologist, transplant team, PCP, and other specialists I see have the most up to date information about me. I have learned that you have to become your best advocate when it comes to your health.
Being a kidney patient at an early age has made realize that I must be more invested in myself than anyone else. Being an engaged patient means working in an active partnership at various levels in the healthcare system to not only improve one’s health but overall healthcare needs. As patients our ideas and knowledge are invaluable and can have an impact on the future of healthcare and treatment of kidney patients.
How engaged are you?
What a pleasure it is to be invited to Washington DC to put a face to people who are on dialysis and who have kidney disease. I am not the only one advocating against the proposed 9.4% CMS cuts to ESRD patients. These two gentlemen are very active in the fight against kidney disease and advocate in their communities and via social media tirelessly. I thank you both James and Devon for what you do and the voice you provide for the millions affected with #kidneydisease
Learning to Embrace My Illness…..
Having kidney disease has not been an easy journey and truthfully I am not sure if embrace is the right term, but I have come to accept it. Kidney disease has taught me to deal with things differently, especially with challenges that may arise in my life. I have learned patience, learned that the best thought out plans sometimes fail, learned to cry when I need to and have learned that it’s okay to ask for help. Trying to be strong all of the time can wear on your mind, body and spirit. It is unimaginable to think that you can endure this journey alone without support.
Having kidney disease has taught me to look at things differently, through a different filter. After being diagnosed, I remember not telling everyone that I had kidney disease or that I was on dialysis. Being 18 and trying to find out who I was paired with having a chronic illness was a lot for me to handle at that time. Although I knew it was nothing that I did to develop chronic kidney disease, I still felt awkward and a little embarrassed. Looking at me you wouldn’t be able to tell that I had a catheter in my abdomen, but to me the whole world could see it. I wasn’t thinking this catheter is keeping me alive and well at that time, I was more concerned about what someone else may say if they knew.
It wasn’t until after my initial kidney transplant that I realized that I would always be a little different from everyone else. I didn’t have a hidden catheter but would need to take daily medication for my kidney. I was simply trading up to a different form of renal replacement therapy, which yields a better quality of life for me. I have learned to love being different from the rest, in fact I wouldn’t have it any other way. I have learned that having kidney disease tells a lot about me but does not define me. I have come to realize that we each carry something that given the option to choose would not carry it. I am quirky, different and will always be a kidney patient, I am fine with that and embrace my differences.
There is an estimated 20 million Americans who suffer from chronic kidney disease (CKD), including 400,000 individuals who are undergoing treatment for end‐stage renal disease (ESRD), or kidney failure. Most commonly caused by diabetes or high blood pressure, kidney failure is expected to affect more than 2 million people by 2030! <—-WOW
Without a form a renal replacement therapy, dialysis or a kidney transplant, patients suffering from kidney failure will not survive. Since transplant organs are in short supply, most patients must endure a form of dialysis, either at home on in a dialyis center. Dialysis acts as an artificial kidney by filtering body wastes and extra fluid from the blood stream.
Reimbursement for dialysis services under the ESRD Prospective Payment System(PPS) has been reduced numerous times in recent years, prior to the additional sequestration‐related cuts implemented earlier in 2013. Further cuts on the scale of those outlined in the proposed rule will not only compromise the ability of most dialysis facilities to maintain the staffing levels necessary to provide appropriate care to Medicare beneficiaries with ESRD, but will also
increase the likelihood that some dialysis facilities will be forced to close their doors.
Additionally, the reductions are likely to have a disproportionately negative impact on rural communities and efforts to address health care disparities in the ESRD patient population.
As a kidney patient and advocate, it is necessary to protest against these proposed cuts. Battling kidney disease is already a challenge in itself. Having to worry about ADEQUATE AND SAFE care is something patients should not have to worry about. It is very disappointing to know that some centers may be shut down, patients who have a hard time as is getting transportation will suffer more and that most people are not aware of how prevalent kidney disease is in the Unite States.
Meshias Hope Website
Launched the website today! (woo hoo) Thanks to everyone who has supported me on my journey and for taking the time to visit my site. I truly appreciate it. Also remember to follow me on Facebook at https://www.facebook.com/MeshiasHope