Women With Chronic Kidney Disease Face Unique Challenges...

So the article states "Women with Chronic Kidney Disease face unique challenges"

DUH! 

I mean it is a good read but I feel like I could have wrote this article myself having lived through it. I believe kidney disease is hard for anyone of any age, race, or sex but I do think that it is especially hard for women. Imagine how it feels for those of us who started dialysis young. My 16 & 17 year old friends did not understand why I just stopped coming to school, or why I couldn't eat pizza because there is a lot of potassium and sodium in the tomato sauce and phosphorous in the cheese, or why I couldn't hang out and drink a 40 because my fluid allowance for the entire day was 32 ounces. All my friends were graduating from high school, developing friendships and relationships and my life was full of dietary restrictions, depression, self-esteem issues (ask me how easy it is to feel sexy in your 20's with a catheter in your neck and scars all over your body), and it all revolved around being attached to a machine at 6 am Monday, Wednesday, and Friday for nearly 4 hours if I wanted to survive. Then if my sites decided to be difficult and bleed for a while or my blood pressure dropped because I was pulling off 8-11 pounds of fluid at a time that 4 hour treatment could easily turn into 5 or 6 hours and then being dehydrated, exhausted, and useless the rest of the day. And then there is the fact that your kidneys to so much more than just filter and clean your blood. They also stabilize electrolytes, produce hormones that regulate blood pressure, stimulate red blood cell production, and aid in parathyroid function which helps keep your bones strong. 95% of the time, I was there alone. I drove myself there, I drove myself home. I had no choice. Not that someone is expected to sit and hold my hand for every treatment but considering this all started when I was a teen and it was all just so much for me to take in. I don't know if I ever truly did 'take it in' but rather give it to God and go on autopilot. There were days that after leaving the clinic I was in such a fog and literally just so wiped out that I wouldn't even remember driving home. They didn't have as many options and advances in treatment as they do now, I could not do Peritoneal or home dialysis and finish high school like you can now. I was already living out on my own with my boyfriend (who later became my husband, then ex-husband) and even if home dialysis were an option we did not have the room in our tiny apartment to be able to do so. All we wanted was for me to be "normal" again so that we could get married and start a family. No one explained that this disease was going to affect my life in every way, shape, and form including having that family of my own that I had always dreamed about. THAT should be a huge part of the patient education. Not just throwing out a bunch of medical terminology and then releasing the patient to a clinic full of workers who are there for a paycheck not a passion. I was lucky enough to have been on dialysis before healthcare workers became salaried zombies and my dialysis team was my family not just healthcare providers. The patients that I mentor now all tell me how the employees typically treat them poorly, and they are not allowed to develop any type of "friendships" with their technicians and nurses. I don't know how people make it through in-center dialysis now seeing as all of the reports I get seem to be similar. Technicians and nurses along with the social workers even in some cases just punching a clock for an hourly wage and acting as if you are interfering with THEIR day. I try to encourage my patients to speak up just as I did. I was the patient advocate in our clinic and because many of the older patients had concerns or complaints but were afraid of retribution, I took the issues to the social worker on their behalf so that they could remain anonymous. As society continues to harden itself to the plight of our fellow humans these cases of neglect and blatant disregard of patient care standards is only going to get worse if it is not addressed now. Knowing all of that, ask yourself. Does dialysis sound like a welcoming option for a person already trying to adjust to having a chronic and life-threatening illness?

Love your kidneys my friends because trust me, you do not want to be on this side of the disease.

Further Down The Spiral

Unfortunately getting listed at University of Michigan was a no-go. Because I live in Florida and my only secondary insurance is my share of cost Medicaid (which is barely insurance since it pays for NOTHING until I spend $1314 in a month on medical bills myself) I cannot be accepted into their transplant program. We even spent hours on the phone with a couple insurance companies who all declined to cover me because of my end-stage renal disease being an exclusion for coverage on their policies. So I am back to waiting on Tampa. And as far as Tampa goes my case was SUPPOSED to have gone before the medical board on May 18th according to my coordinator but for some reason it didn't. And it won't go this week because "someone called in" and she (my coordinator) has to fill in for her instead of taking cases to the board. This is our medical system at work. If someone calls in, lives are put on hold so that someone else can make up for the work not being done by the person who failed to show up. I am sorry if I do not find that to be an acceptable excuse as to why I have been waiting a year to get to the point where my case could go to the board and now I am being delayed by at least two more weeks because of an employee calling in??? How is this even possible?? An average of 22 people die each day while waiting on the list for a life-saving organ transplant and these people who are supposed to be medical professionals are treating it as if we are waiting for our order at a deli counter! I AM NOT A NUMBER!!! I AM A HUMAN BEING WHO WANTS TO LIVE!!! 

I cannot explain to you how hopeless some of these conversations and interactions with these people can make you feel. There is no compassion, no feelings of remorse when they are telling you that once again you have to wait to be approved by a board to get onto a list only to wait some more. I know that it doesn't only make sense to me that everyone should be listed and if an organ comes up for you that you aren't prepared to receive by their standards, you get skipped and it goes to the next person. That to me seems like a more fair and ethical way to do it rather than hold people off the list until they get so sick that transplanting them would either do no good or it is no longer an option. So as frustrating as it is...all I can do is keep fundraising, praying, and waiting. Thank you all for being so patient and understanding and kind while I am silently over here losing my mind. The stress and frustration with having to deal with all of this alone has been taking a huge toll on me both physically and emotionally. I am not ashamed to admit that I have been dealing with some depression lately and I have lost interest in many of the things that used to bring me joy all because I am struggling to understand what part this all plays in God's plan for me. I know that I am not a bad person but sometimes it is hard for me to see just what kind of future I can even hope to have when the life that I saw for myself slips further and further away each day. It's an awful feeling when your body just doesn't work the way you want or need it to. I want to workout and be able to chug a bottle or two of water but I can't because my body will not eliminate it and I will wind up short of breath and all swollen from drinking that much when my kidney can't get rid of it. I want to have the energy to run, and work, and manage my daily life without feeling like I can't make it through the activity or I need to take a nap immediately after but because the kidneys produce red blood cells and mine aren't doing their job, anemia (low red blood cell counts) controls much of my life. Some days it's hard to get out of bed, and some days I have a burst of energy so I take advantage of it and then I'm usually paying for it the next day. I wouldn't wish this condition on my worst enemy because it truly is a lifelong struggle. So please everyone let this be a warning...LOVE AND APPRECIATE YOUR KIDNEYS!!! Have them checked regularly, keep an eye on your blood pressure, manage your diabetes (if you have it), be wary of urinary tract infections (that was what caused my condition), if you are prescribed antibiotics ALWAYS take the entire course of them, and stay away from medications that are known for causing kidney damage. I guess that is all I have for you now, thanks for reading and for your continued prayers and support. I can really use them. Also please feel free to stop by my HelpHOPELive page by clicking HERE where you can leave some uplifting well wishes by signing my guestbook, look through some pictures from volunteer events I've participated in, and share my page to multiple media outlets to help spread the word about my story and my search for a living donor. In addition click HERE to visit my website for information on organ donation, paired exchange donations, information for patients and caregivers, and to read about my patient of the month.

Love & Blessings,
Mel

The Struggle Is Real

I know it's been a minute since I last updated and I apologize but I've been struggling to adjust to the loss of a significant relationship in my life with the person who had also agreed to be my caregiver following my transplant surgery when it finally occurs. As I may have mentioned in my last update having a strong support team in place is considered pivotal in a transplant patients recovery as this is a major surgery that comes with some significant risks and restrictions immediately following the procedure. Since this change I have had to start looking at other options which included returning to my home state of Michigan for surgery if I could get listed at the University of Michigan where I was transplanted the first time. I have at least one person back there that I can depend on to help me out after surgery which is more than I have lined up now in Florida.

Having a chronic illness certainly changes your perspective on who you call a friend and who is merely an associate or an observer of your life. With my story being in the paper and on various social media outlets I have attracted a lot of observers and associates but still have very few people I can truly depend on. With all that being said I made the trip to Michigan only to find out that U of M would not see me for an evaluation because I do not have a secondary insurance payer besides Florida Medicaid which is obviously not valid outside of Florida. The social worker was very helpful though I must say. She spent over an hour on the phone with me while we conference called some Florida insurers to see if I could get onto a plan so they could schedule and evaluation before my departure. Unfortunately we ran into a brick wall. The companies we were in touch with all had plenty of plans to offer but once they got to their health questions I was deemed ineligible for coverage due to my end-stage renal disease and prior diagnosis of needing a transplant. What we found was that most of the plans have exclusions for those of us with ESRD and if you've been told by a physician that you require surgery within 24 months you do not qualify to purchase a secondary policy. Needless to say I felt devastated. Even with the money I've raised that amount will only cover the share of cost from Medicaid for 6 months (@ $1314 per month) and the "donut hole" in my Humana prescription coverage of $4700, it will not cover the 20% remaining of Medicare which is why no other state will list me without a private secondary insurer such as Blue Cross. So either I have to raise even more money which is not a bad idea considering these medical costs continue to add up daily even now, or I have to move out of Florida and try to get on a secondary insurance plan in another state. I don't want to be forced to leave what I now consider to be my home state simply because I have a health condition for which I can be treated right where I am at now if someone would just get on the ball and get my case to the medical board for wait listing. All of my information is now with my coordinator in Tampa and I should be coming up for consideration but with the recent closure of a neighboring transplant facility Tampa has now gotten backed up due to the additional patients they are now taking on from Gulf Coast.

There is no way to fully convey my feelings about how this is going. I feel very alone and very frustrated. I see colleagues who have been younger and affected by this disease for much less time than I pass away, I am scared to sleep some nights for fear I will not wake up and no one will be there to find me for weeks or possibly even months considering how often I talk to my family and having very few friends nearby. At 36 most people are planning their weddings or their children's future and I'm planning my funeral. Sometimes it is all just so overwhelming that I go into a full blown panic attack. With all the medical bills on my credit report I don't know if I'll ever be able to do the things most take for granted like finance a car or buy a home but I try my best not to focus on those things and just enjoy the time that I have left here on earth. I pray every day for some good news to come my way because having all these doors slammed in my face is taking a big toll on my otherwise positive outlook. I've gotten so good at hiding my depression now that even my doctors think I'm fine but to be honest putting on makeup to hide my tired, puffy, eyes and flashing a big bright smile to keep from crying is exhausting. I can only compare it to how it must feel to live two separate lives. Not every day is like this but they are increasing in frequency with the worse my labs get and the more lethargic I feel.

Despite all of my personal battles I was very happy to be a part of the Night for Life IX event at the Broadway Palm Dinner Theater in Fort Myers last month. As the secretary of the Organ Transplant Recipients of SWFL group I volunteered to take charge of the silent auction portion of the event. Myself and several other members of the group spent all day on April 11th prepping and setting up for the event and by the time doors opened I was still in street clothes with no makeup on! After a quick change in the bathroom I was able to go out and greet our amazingly generous guests and answer some of their questions about both kidney disease and organ donation in general. We considered the event to be a GREAT success and the turnout was even bigger than it had been in previous years! The event was also covered by Melanie Payne from the News Press who has been following and sharing my story in her articles for the past four months with the hopes of finding me a living donor. If you're interested in reading the full article you can click here.

The one thing I find that I have to continuously explain to people is that fundraising is extremely difficult. It's not just the planning and execution of fundraising events but it's also the sharing of all of the personal aspects of your life and opening yourself up to the criticism of others. Not everyone is supportive of people who have to ask for help in situations like this and it's mainly because they just don't understand it so they judge based on the appearance of things. Not all of us who have terminal or chronic illnesses look the part of someone who is "sick" or "in need" and as awful as it sounds for me to say, that is a drawback. Those whose illnesses are presented physically and cannot be hidden obviously take precedence over those of us who appear healthy and thriving. Often times we are dismissed as fakes or that we should just go make the money ourselves when no one can really see what is going on inside our bodies that prevent us from doing so. I learned early on not to judge a book by it's cover because as a society we have gotten very good at hiding things from one another. Not everyone wants to be treated like a "sick person" or pitied for their circumstances. I am one of those people which is why I try so hard to live as normal a life as possible so that I am not treated differently where it matters most. Those of us who fundraise do it out of necessity, not out of greed or laziness. I can say with great certainty that we've all had or moments in which we'd wished we were someone else or that we could live someone else's life. We've all had thoughts of how we would have handled a situation or experience differently than someone else we know. But truly many more of us with terminal and chronic illnesses daydream of those things often. Of how we'd just like to have a "normal" life and complain about the things that people without our problems complain about. Personally I would love to complain about how often I have to go pee, the person who needs new lungs would love to be able to complain about being out of breath from working out rather than from simply sitting still, the person waiting on an intestinal transplant would surely love to complain about their food not being prepared to their taste rather than not being able to taste food at all. We fundraise because we just want the chance to enjoy all of the things that so many people take for granted every single day. So the next time you take a deep, cleansing, breath; thank God for that ability and appreciate it for all that it's worth. When you go in to use the restroom thank God for the ability to eliminate those wastes from your body. When you see a beautiful flower, or the face of a loved one thank God for your gift of sight for there are others who have only known darkness and are waiting to see the light.

Thank you all for continuing to follow my story and I pray that my next update will be more upbeat and have something much more positive to report.

Love & Blessings,
Melissa