Thank You and God Bless!
Melissa <3
Thursday, September 8, 2016
Second Chance Creations and Resale
Currently I am on social security disability due to my failing kidney and the multitude of other conditions that I have been diagnosed with as a result of my kidney disease. As you can probably imagine with only disability as my source of income keeping my monthly household bills and current medical expenses paid is a struggle and there are times when my bank account is at zero weeks before my next check is to come. I have been selling personal items and items I create myself on eBay and in Facebook groups as a way to try and subsidize my income until I can return to work. I ask that you check out my eBay store and share it with others. Perhaps you will see something listed that you may want or need in your life! I add more items often so be sure to check back another time if you don't see anything posted that peaks your interest. You can visit my eBay store by clicking here----> Second Chance Creations and Resale
Monday, July 11, 2016
FINALLY!
On July 1st my transplant coordinator called to inform me that the medical board at Tampa General Hospital has FINALLY approved me for the kidney transplant list! It has been a long 14 months of doctors visits, medication changes, testing, treatments, a broken bone (it was my toe..lol), and lots of co-pays, mileage, and waiting room time accrued but all that accounts for is life experience as my time on the list of 99,754 others waiting for a kidney officially starts now.
Oddly enough the day before I was approved I had posted an update with a video I made discussing my struggle to stay positive during this process. I don't regret showing just exactly how stressful and lonely my situation can be. There are days when I just don't even have the energy to get up and accomplish basic chores, and then other days I wake up feeling like I could take on the world and that is typically when I over do it. It's because of this inconsistency that I get frustrated and depressed. Thankfully I at least have the listing part out of the way so that I can start accruing time while I continue to search for a living donor. As of now the expected wait time on the list for a type O kidney is 2-3 years here in Florida.
Also, being put on this list does not mean I am guaranteed to stay active on it. In order to remain active on the list I have to continually address medical issues that arise immediately, including my most recent discovery that I need two wisdom teeth removed. As most of you know, wisdom teeth can become impacted and cause abscesses or infections, something that I cannot allow to happen if I want to stay active on the list. So now I have to visit an orthodontic surgeon on the 5th to see just how much I am looking at to have them removed. One of my wisdom teeth which is actually numbered as the first tooth (go figure) has already started coming through my gum and it is decaying. Tooth #32 is still under the gum line, but it is impacted and causing frequent pain for me. With me undergoing the scrutiny of this wait list process it was mutually decided that both need to be removed prior to them causing any problems and/or infections that would result in me being placed as "inactive" on the wait list until the problem is addressed. Part of my struggle to get on the list recently was due to my white counts being high which typically indicates the body is producing more white blood cells to counteract an infection. The last thing I need now that I am on the list is to be put on hold or removed because of some stupid wisdom teeth that I should have gotten removed preemptively when I had dental coverage. As some of you know, Medicare does not cover dental so this is 100% out of pocket for me. My initial visit this Tuesday is expected to cost me at least $275 for the consultation and panoramic x-rays, and then the extractions themselves are another $250-600 each depending on what is required to remove them. I am taking $275 out of my kidney fund to pay for the consult and then requesting an increase on a couple of my credit cards to try and cover the extractions. I am up to my ears in debt and I am in the process of fighting to keep my Medicare and disability which is costing me almost $400 a month in fees for legal counsel that I really can't afford right now seeing as I need to replace my dying car so that I have transportation to all of my appointments and Tampa for the transplant when the time comes. Not having dependable transportation is also grounds for being removed from the list as well. :(
So with all that being said, I am trying to just take things day by day and do my very best to stay positive. My birthday is coming up on the 27th which is also the 20th anniversary of my first dialysis treatment and official diagnosis with kidney failure. I am focusing on making that truly a day to celebrate another year of life considering I was told on that day in 1996 that I was going to die. For a 17 year old to hear that from a doctor is terrifying! Even now most people take what their doctor tells them as the gospel because after all they are the ones who studied to become medical professionals and we have been bred to trust that they know what they are doing. I wish that I could tell the doctor who tried to plant that seed in my head to her face just how important it is to take an optimistic approach when giving a patient a diagnosis rather than bluntly stating their best guess based on outcomes they learned about in school. None the less no thanks to Dr. Voelpel, I am here 20 years later and still on this side of the grass. That is why I try not to take what the minor deities (MD's) say too seriously. The only one who can say when I am going to give up this human form is God and until that day everything I am told otherwise is merely an opinion.
Thank you everyone who has been following my journey and offering words of kindness, support, and love...it is all very much appreciated and it is also a huge part of why I am still here today. I couldn't have made it this far without all of you rallying behind me to boost my spirits and to lend a helping hand when I needed it most. I ask that you please continue to share my story and spread the word about the importance of organ donation. There are over 120,000 people on the list waiting for the gift of life and you can help all of them by bringing awareness to the need for more people to register as an organ donor, and educating yourself on living donation. We're all in this together!
Love & Blessings,
Melissa
"If you give, you begin to live." - Dave Matthews
Oddly enough the day before I was approved I had posted an update with a video I made discussing my struggle to stay positive during this process. I don't regret showing just exactly how stressful and lonely my situation can be. There are days when I just don't even have the energy to get up and accomplish basic chores, and then other days I wake up feeling like I could take on the world and that is typically when I over do it. It's because of this inconsistency that I get frustrated and depressed. Thankfully I at least have the listing part out of the way so that I can start accruing time while I continue to search for a living donor. As of now the expected wait time on the list for a type O kidney is 2-3 years here in Florida.
Also, being put on this list does not mean I am guaranteed to stay active on it. In order to remain active on the list I have to continually address medical issues that arise immediately, including my most recent discovery that I need two wisdom teeth removed. As most of you know, wisdom teeth can become impacted and cause abscesses or infections, something that I cannot allow to happen if I want to stay active on the list. So now I have to visit an orthodontic surgeon on the 5th to see just how much I am looking at to have them removed. One of my wisdom teeth which is actually numbered as the first tooth (go figure) has already started coming through my gum and it is decaying. Tooth #32 is still under the gum line, but it is impacted and causing frequent pain for me. With me undergoing the scrutiny of this wait list process it was mutually decided that both need to be removed prior to them causing any problems and/or infections that would result in me being placed as "inactive" on the wait list until the problem is addressed. Part of my struggle to get on the list recently was due to my white counts being high which typically indicates the body is producing more white blood cells to counteract an infection. The last thing I need now that I am on the list is to be put on hold or removed because of some stupid wisdom teeth that I should have gotten removed preemptively when I had dental coverage. As some of you know, Medicare does not cover dental so this is 100% out of pocket for me. My initial visit this Tuesday is expected to cost me at least $275 for the consultation and panoramic x-rays, and then the extractions themselves are another $250-600 each depending on what is required to remove them. I am taking $275 out of my kidney fund to pay for the consult and then requesting an increase on a couple of my credit cards to try and cover the extractions. I am up to my ears in debt and I am in the process of fighting to keep my Medicare and disability which is costing me almost $400 a month in fees for legal counsel that I really can't afford right now seeing as I need to replace my dying car so that I have transportation to all of my appointments and Tampa for the transplant when the time comes. Not having dependable transportation is also grounds for being removed from the list as well. :(
So with all that being said, I am trying to just take things day by day and do my very best to stay positive. My birthday is coming up on the 27th which is also the 20th anniversary of my first dialysis treatment and official diagnosis with kidney failure. I am focusing on making that truly a day to celebrate another year of life considering I was told on that day in 1996 that I was going to die. For a 17 year old to hear that from a doctor is terrifying! Even now most people take what their doctor tells them as the gospel because after all they are the ones who studied to become medical professionals and we have been bred to trust that they know what they are doing. I wish that I could tell the doctor who tried to plant that seed in my head to her face just how important it is to take an optimistic approach when giving a patient a diagnosis rather than bluntly stating their best guess based on outcomes they learned about in school. None the less no thanks to Dr. Voelpel, I am here 20 years later and still on this side of the grass. That is why I try not to take what the minor deities (MD's) say too seriously. The only one who can say when I am going to give up this human form is God and until that day everything I am told otherwise is merely an opinion.
Thank you everyone who has been following my journey and offering words of kindness, support, and love...it is all very much appreciated and it is also a huge part of why I am still here today. I couldn't have made it this far without all of you rallying behind me to boost my spirits and to lend a helping hand when I needed it most. I ask that you please continue to share my story and spread the word about the importance of organ donation. There are over 120,000 people on the list waiting for the gift of life and you can help all of them by bringing awareness to the need for more people to register as an organ donor, and educating yourself on living donation. We're all in this together!
Love & Blessings,
Melissa
"If you give, you begin to live." - Dave Matthews
Friday, June 10, 2016
Don't Let Appearances Fool You
Just because dialysis centers are found in nearly every strip mall now does not mean that it is a simple, or pleasurable experience. The appearance of dialysis facilities on every corner should be more alarming than it is but when they are hidden among clothing stores and chain restaurants who would really think there are complicated and life-altering procedures taking place within those walls.
Right next to where you are shopping or enjoying your meal there are people fighting tooth and nail for their lives. There are loved ones who are dropped off and left for hours to sit alone hooked to a machine while their blood is removed, ran through a filter, and "cleaned" of both the good and the bad things that accumulate in our bodies when ones kidneys can no longer function properly.
There is pain associated with treatment, lots of it and the last place you would want to be experiencing this is in a shopping plaza. There is exhaustion, dizziness, heart palpitations, chest pain, shortness of breath, cramping, vomiting, and much more. All things that you would are totally unaware of are happening all within the confines of what used to be a hair salon or a retail store; procedures you would expect to be taking place in a hospital setting, not a shopping center. Sure, as patients we grin ad bear it because after all, it is a means to keep us alive until we can hopefully get a transplant. Meanwhile, the growth of the dialysis "business" goes unnoticed. Why should attention be paid to these facilities erupting? Well, let me explain.
The growth in dialysis clinics should be alarming considering that according to the National Kidney Foundation 1 in 3 American adults are at risk for kidney disease and 26 million already have it and do not even know it! Kidney disease is the ultimate silent killer. Many people do not realize that they have kidney disease until they are already in stage 4 or 5 and are becoming symptomatic so they finally seek medical attention. Often times it is too late at this point and the damage to the kidneys is irreparable requiring the person to begin treatment. There are many causes of acute and chronic kidney disease such as diabetes, high blood pressure, drug abuse, strep and recurrent urinary tract infections, Lupus, Good Pastures Syndrome, blood clotting disorders, and various other medical conditions which can lead to kidney failure but what about the lesser known causes like the dyes used in imaging studies, and extensive ibuprofen or proton pump inhibitor use? How many people knew that prolonged use of over the counter medications like Advil and Motrin or Prilosec and Prevacid can cause kidney failure? Based on the amount of patients on dialysis now because of OTC medications, obviously not many are being educated on the risks of their use.
And then unless you are one of the few who has family and friends lining up to be tested to donate a kidney to you, this is what you have to do in the meantime. If you chooses to do hemodialysis you will most likely visit one of the strip mall centers I have been referring to where you will be greeted by this, a long stretch of cold chairs and obnoxiously beeping machines. No privacy, no sense of comfort, but if you're lucky you might just get your own t.v. and some ice chips to kill the 3-4 hours you'll spend doing what your kidneys naturally do every 30 minutes.
You get hooked up right next to another person via the two large needles, or a chest catheter which goes directly into your heart and watch as your blood circles through the tubes into the filter and back into your body. Now, imagine a machine trying to clean out 2-3 days worth of toxins and fluid build-up in 3-4 hours when your kidneys would have naturally filtered your entire blood supply 6-8 times in that same time frame if they were working properly. Obviously the machine is pulling those substances out of your blood at a much higher rate than your body would which is why there are so many side effects and complications associated with the treatment.
This is why those of us who've experienced it fight so hard to delay beginning treatment again if it becomes necessary. After being given a taste of the freedom associated with having a functioning kidney, who would want to return to that? It's like asking a person to give up their place in heaven to take a seat in hell. For us, although we are grateful for the treatment which extends our lives, dialysis is hell. It is the hell that we must return to three days a week unless we want to slowly drown in our own body fluids and let our body painfully shut down organ by organ from toxin build up. Sorry for the graphic details but that is exactly what will happen if we choose to miss dialysis or stop treatment altogether. And then of course there is this...
As you can see, the number of patients on dialysis who die each year since the 1980's has not changed significantly. When compared to other chronic illnesses and conditions it is likely that you will find that kidney disease is among the few that the death statistics have not improved significantly despite the supposed advancements in treatment.
Why is this you may ask? Because dialysis is a TREATMENT not a CURE. Not to mention dialysis is big business! Why just look at the costs of a dialysis patient versus a transplant patient and you will see that it is much more expensive for a patient to be treated with dialysis as opposed to receiving a transplant. On average, a hemodialysis patient incurs nearly $90,000 annually in treatment costs versus just under $30,000 to maintain a functioning kidney transplant. So why aren't more people getting transplanted? No worries, I have your answer...
That would be because of the shortage of organ donors silly! Why else?! As of 11:02 a.m. today there are 120,616 people waiting on the national waitlist for organs and 83% of them are waiting on kidneys. Kidneys are one of the few organs that can be donated while living and the donor will never even notice the difference! Why do you think we were given two? The other is a back up of course! This can be proven in patients like those who have had cancer or an injury resulting in a loss of function. The other kidney simply picks up the work of the missing or damaged one! Amazing isn't it?
This is why organ donation is so important! Doesn't everyone hope to leave a legacy in their passing? What greater blessing could you bestow upon the earth than to allow others to benefit from the gift of life when your time here is through? My donor chose to leave his gift which has given me nearly 11 wonderful years full of laughter, love, and even tears but I am incredibly grateful to have been able to experience every moment of pleasure and pain without depending on a machine and a super restrictive diet to survive. My donor has not only given me the gift of life, but he also helped to shape me into the person that I am today. Without him I would not have seen such beautiful sites, met such wonderful people, or experienced life as it was meant to be lived...not attached to a machine, and not curled up in an exhausted ball of emptiness after dialysis sucks what little life you had left in you out. I was on dialysis for 9 years but even if you ask someone who has been on it for 9 months, I'm sure they will agree with my statement. Register to be a hero, tell your family about your wishes, and encourage others to do the same. Your final gift to the world can be to selflessly give life and what better example could you possibly set for generations to come? Give love, give life, click here to register to be an organ donor today!
Wednesday, June 1, 2016
Just When I Think I Am Getting Somewhere...
Yet another setback!
My transplant coordinator called me yesterday to go over some things prior to my case going to the board for approval to be placed on the waitlist and I was informed that I have a parasite (Strongyloides) living in my body that must be treated before I will be approved to be on the active list. The hospital did this testing over a year ago but I was just told about this yesterday so this is only going to further delay the process. From what I was told the treatment process could take up to a few months because it requires more than one round of the medication with a break in between the treatments.
I'm feeling very discouraged. If this had been brought to my attention when the labs were drawn a year ago I could have already had this treatment done and been clear of the parasite, but instead I have been living with it in my system which may or may not be causing some of my current problems. This is proving to be a very difficult and frustrating experience the second time around and it is taking a toll on me emotionally, physically, and mentally. Not to mention I am still hoping to find a living donor but I have had no new leads there.
I started a Booster campaign to sell t-shirts with my website on them for other people to wear in the hopes of directing more traffic to my page and more people will get tested. If you would like to become a part of "Team Tuff" and wear one of these awesome shirts designed by me to help spread the word about my search in your area please click HERE
The shirts will only be available for a limited time (until June 12th I believe) and they will not print at all unless I have a minimum order of 9. I'm getting desperate here, so I am trying every avenue I can seeing as social media and having it on the back window of my car has not worked thus far. Next stop is a sign in my yard which will be coming soon no doubt because I am not ready to give up without a fight! Next update I hope to have something good to report since it seems the last couple have been downers. Until then....
Love & Blessings,
Mel
My transplant coordinator called me yesterday to go over some things prior to my case going to the board for approval to be placed on the waitlist and I was informed that I have a parasite (Strongyloides) living in my body that must be treated before I will be approved to be on the active list. The hospital did this testing over a year ago but I was just told about this yesterday so this is only going to further delay the process. From what I was told the treatment process could take up to a few months because it requires more than one round of the medication with a break in between the treatments.
I'm feeling very discouraged. If this had been brought to my attention when the labs were drawn a year ago I could have already had this treatment done and been clear of the parasite, but instead I have been living with it in my system which may or may not be causing some of my current problems. This is proving to be a very difficult and frustrating experience the second time around and it is taking a toll on me emotionally, physically, and mentally. Not to mention I am still hoping to find a living donor but I have had no new leads there.
I started a Booster campaign to sell t-shirts with my website on them for other people to wear in the hopes of directing more traffic to my page and more people will get tested. If you would like to become a part of "Team Tuff" and wear one of these awesome shirts designed by me to help spread the word about my search in your area please click HERE
The shirts will only be available for a limited time (until June 12th I believe) and they will not print at all unless I have a minimum order of 9. I'm getting desperate here, so I am trying every avenue I can seeing as social media and having it on the back window of my car has not worked thus far. Next stop is a sign in my yard which will be coming soon no doubt because I am not ready to give up without a fight! Next update I hope to have something good to report since it seems the last couple have been downers. Until then....
Love & Blessings,
Mel
Monday, May 30, 2016
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.
Tuesday, May 24, 2016
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
Love & Blessings,
Mel
Tuesday, May 3, 2016
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
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
Thursday, February 4, 2016
New Day, New Doctor
Okay everybody...here's the latest!
(Better grab a snack or a beverage because it's a long one!)
I finally found a specialist locally who realizes the importance of getting me medically cleared and put on the transplant list! I had my first appointment yesterday and now we are just awaiting results so that he can either write his letter clearing me definitively or I'll have to have another preventative medical procedure and then he can clear me to be wait listed. Either way...it's progress! The last doctor I saw for the very same clearance delayed me for 2 months without an explanation (other than she was NEVER in the office when I called) which was the very reason that I contacted the News-Press about my plight in the first place. As a medical assistant myself I know that patient care should ALWAYS come first especially when concerning situations like this that require immediate attention. However, this particular physician obviously felt otherwise and her lackadaisical attempt at providing medical care has cost me dearly.
With an average of 22 people being added to the transplant list daily, her delay resulted in approximately 1320 people being added to the list ahead of me and that number grows by each passing day. I had everything but this clearance in place and my coordinator was prepared to take my case to the medical board for approval (which can take up to another 2 weeks after receipt of said clearance) but she failed to do her job. When Melanie from the News-Press contacted her to find out why she was not returning my calls nor had she even been in contact with the transplant center, she immediately got defensive and called me irate regarding being contacted by the media and then she proceeded to discharge me from her practice. Real professional, right? That brings me to where I am today, with a new doctor and paying for the entire exam out of pocket because Medicare has already been billed once for this exam through her office and they will not pay for another.
This is why I speak up. I know that I am not the only patient who has had to deal with substandard care as I have seen it myself in medical offices I have worked in before. Patients are often treated like financial assets rather than people. They come into the office expecting to receive an adequate amount of time with the doctor to discuss their concerns but instead are often rushed out in order to increase the amount of patients seen in a day. Sadly, more patients "treated" = more money in their pockets. It's unfortunate the medicine has become such big business because I remember when doctors actually cared about their patients and formed long-standing relationships with them. Now personalized patient care has become non-existent and instead it has been replaced with an army of emotionless zombies who are there for a paycheck.
THIS IS WHY WE AS PATIENTS HAVE TO ADVOCATE FOR OURSELVES! We are paying for a service therefore we are entitled to a certain level of quality and satisfaction with said service. Do not be afraid to speak up, get a second opinion, or change doctors altogether. The field of medicine needs to return to a focus on the diagnosis and treatment of the individual rather than what it has evolved to which is the fleecing of patients pockets and insurance benefits. With all that being said, my new doctor appears to have the qualities of a great medical provider and I am praying that he does exactly what he has promised which will result in me getting on that wait list within the next couple of weeks. Lastly, I wish that I could give each and every one of you a great big hug for all of the support, kind words, and AMAZINGLY GENEROUS donations! My journey is just one of the many who travel this same road that I am on. I am truly grateful for each and every one of you. My dream is to establish a non-profit advocacy and fundraising organization of my own so that no patient is left behind and I am currently seeking out interested parties to join me on this wonderful project as I know nothing about starting a non-profit or even building a website without the help of GoDaddy but I am eager and willing to learn!
So in closing, thank you again to all of you who are following my story and if you happen to see me out and about don't be shy! Come on up, introduce yourself (just so it's not weird lol), and get yourself a big ole hug!!
Love, blessings, and my eternal gratitude,
Mel
(Better grab a snack or a beverage because it's a long one!)
I finally found a specialist locally who realizes the importance of getting me medically cleared and put on the transplant list! I had my first appointment yesterday and now we are just awaiting results so that he can either write his letter clearing me definitively or I'll have to have another preventative medical procedure and then he can clear me to be wait listed. Either way...it's progress! The last doctor I saw for the very same clearance delayed me for 2 months without an explanation (other than she was NEVER in the office when I called) which was the very reason that I contacted the News-Press about my plight in the first place. As a medical assistant myself I know that patient care should ALWAYS come first especially when concerning situations like this that require immediate attention. However, this particular physician obviously felt otherwise and her lackadaisical attempt at providing medical care has cost me dearly.
With an average of 22 people being added to the transplant list daily, her delay resulted in approximately 1320 people being added to the list ahead of me and that number grows by each passing day. I had everything but this clearance in place and my coordinator was prepared to take my case to the medical board for approval (which can take up to another 2 weeks after receipt of said clearance) but she failed to do her job. When Melanie from the News-Press contacted her to find out why she was not returning my calls nor had she even been in contact with the transplant center, she immediately got defensive and called me irate regarding being contacted by the media and then she proceeded to discharge me from her practice. Real professional, right? That brings me to where I am today, with a new doctor and paying for the entire exam out of pocket because Medicare has already been billed once for this exam through her office and they will not pay for another.
This is why I speak up. I know that I am not the only patient who has had to deal with substandard care as I have seen it myself in medical offices I have worked in before. Patients are often treated like financial assets rather than people. They come into the office expecting to receive an adequate amount of time with the doctor to discuss their concerns but instead are often rushed out in order to increase the amount of patients seen in a day. Sadly, more patients "treated" = more money in their pockets. It's unfortunate the medicine has become such big business because I remember when doctors actually cared about their patients and formed long-standing relationships with them. Now personalized patient care has become non-existent and instead it has been replaced with an army of emotionless zombies who are there for a paycheck.
THIS IS WHY WE AS PATIENTS HAVE TO ADVOCATE FOR OURSELVES! We are paying for a service therefore we are entitled to a certain level of quality and satisfaction with said service. Do not be afraid to speak up, get a second opinion, or change doctors altogether. The field of medicine needs to return to a focus on the diagnosis and treatment of the individual rather than what it has evolved to which is the fleecing of patients pockets and insurance benefits. With all that being said, my new doctor appears to have the qualities of a great medical provider and I am praying that he does exactly what he has promised which will result in me getting on that wait list within the next couple of weeks. Lastly, I wish that I could give each and every one of you a great big hug for all of the support, kind words, and AMAZINGLY GENEROUS donations! My journey is just one of the many who travel this same road that I am on. I am truly grateful for each and every one of you. My dream is to establish a non-profit advocacy and fundraising organization of my own so that no patient is left behind and I am currently seeking out interested parties to join me on this wonderful project as I know nothing about starting a non-profit or even building a website without the help of GoDaddy but I am eager and willing to learn!
So in closing, thank you again to all of you who are following my story and if you happen to see me out and about don't be shy! Come on up, introduce yourself (just so it's not weird lol), and get yourself a big ole hug!!
Love, blessings, and my eternal gratitude,
Mel
Friday, January 29, 2016
The Kindness of Strangers
One thing I have been blessed enough to learn in living with Chronic Kidney Disease is to see the good in things. While this is not always easy, I think that many of us in everyday life get so caught up in our activities and stresses that we tend to overlook the little stuff that makes this world such an amazing place to exist. When someone with a chronic illness wakes up in the morning most often they are immediately thankful. We've been blessed with yet one more day to share ourselves with the world! While those of you who have circumstances in your life that make you unhappy may wake up angry or resentful, not eager to get out of bed and greet this brand new baby day that you have been gifted. Your eyes did not open on their own this morning my friends, you were part of God's plan for the day and so you were awoken, you did not simply "wake up" on accident or of your own will. So this is your gift, and what will you do with it?
As many of you know I have been raising money to qualify for placement on the national wait list for a donor kidney. Because of my 80/20 insurance coverage (Medicare covers 80% and I am responsible for 20%) and the fact that I do not qualify for state Medicaid coverage until I pay $1314 monthly out of pocket, I was given an exact figure that I had to have in an account to prove that I would have AT LEAST 6 months of post transplant expenses covered because I am not married, I have no assets, and I have no other means of financial support. This figure also includes the $4700 "doughnut hole" in my prescription coverage that I will also have to pay prior to Humana kicking in and covering my necessary immunosuppressive medication. Without this medication, the kidney will reject and the surgery would have been for nothing so it is IMPERATIVE that I am able to maintain taking this medication for the rest of my life, or the life of the transplant itself. After adding together all of these figures, the price on my head was $12,584.00 That was the exact amount that my life is worth to the insurance companies and without this money I can and have been held off of the national wait list.
During the period of time that has elapsed since beginning the testing and evaluation process and raising these funds just about 5,280 people have been added to the list ahead of me on a list of over 123,000 people all waiting for the same thing, the gift of life. You may be wondering how I get this figure and I will be happy to explain. You see, an average of 22 people are added to the list each day and I began my evaluation with Tampa General on May 11, 2015 which was just over 8 months ago or approximately 240 days and with 22 people added daily that is how I arrive at the figure. Now mind you that is merely an estimate because there is also another 10 people or so each day who lose their battle while waiting but every 10 minutes another name is added to replace them. The shortage of available organs for those who are waiting to live has now become an epidemic leaving people like me to take our stories to the media to encourage more living donors to come forward and to educate more people on the importance of registering to be an organ donor in the event of their death. Educating and encouraging those who are not registered to sign up has now become a passion of mine. I have joined forces with two organizations to both recruit registrants and to help spread the word about the immediate need for donors and how each and every one of you can help in your own way. Occasionally someone feels especially moved by my story and the true kindness of strangers, the sort that restores your faith in humanity, occurs. Enter David Hernandez and his team over at Trendnation.
On January 27th David Hernandez probably woke up and went about his business like he would any other day. Only this day, he may not have had any idea just how much his seemingly simple act of kindness would touch the lives of two very lucky individuals and inspire many more to do the same. You see, David came across an ad for an item I was selling on e-Bay which just happened to be an item that is produced by an company affiliated with the very company that David works for. Something within him encouraged him to not only purchase the item and message me to keep it for myself, but he also expressed an interest in helping me further after following the link to my website in my e-Bay ad and reading my why I was selling my items to begin with. David not only purchased the item and allowed me to keep it for my own enjoyment, but he took his generosity and kindness a step further by also making a donation to both my fundraising account, and the account of Richard, the featured patient on my website who is also suffering from kidney disease. But David did not stop there! After having just shared with me his very own financial restrictions and how the company itself just had to do come cut backs he rallied a group of coworkers together, shared my story with them, and I received several more donations from the employees of Trend Nation totaling just about $215!! All because one man chose to make a difference. He didn't think about how big or how little his show of support was, he just wanted to do what he could with what he had. Something that we can ALL do right where we are. So I encourage you today to be more like David. Take the gift of this day and share it with the world. If that means calling an old friend and reconnecting just to tell them how much you care, paying for the person's order behind you, volunteering your time to a cause that ignites your passion, or making a contribution to someone you know is in need.
We have all the tools necessary within our reach to influence change and we can make the world great again through the simple act of being kind and loving to one another the way God meant it to be.
Big thanks to Brad & Melanie Howard, Erika Szymanowski, Dan Brownsher, Victor A Perez Arevalo, Luis Villarino, David Hernandez, and the rest of the team over at Trend Nation. And please go check out the array of products that the amazingly generous team at Trend Nation have to offer via their websites below!
Silverhooks
Cuffcrazy
Reusable Revolution
Baglane
Health in Style
Wallet Nation
Crystalcase
Trend Nation
Love, Blessings, & Eternal Gratitude,
Melissa
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