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My name is Melissa, and I am in need of a life-saving kidney transplant. At age 16 I was diagnosed with Rapidly Progressive Glomerulonephritis and within two weeks of this diagnosis, on my 17th birthday, I started hemodialysis, a form of treatment for end-stage renal disease. Despite the statistics and the odds against me, I survived nine years of this grueling treatment while waiting on the kidney transplant wait list until I received a call for a match– my gift of life! That selfless gift gave me nearly 11 years of freedom but due to a rejection episode I now find myself in need of another transplant and back on dialysis.
The unfortunate part of kidney disease is that there is NO CURE at this time. A living donor transplant is considered the best form of treatment for my particular condition given my age, extremely high antibodies, and previous long history of dialysis. I have been actively searching for a living donor in addition to being placed on the national wait list which could take a decade or more!
Even with Medicare I will have many uninsured transplant-related expenses such as: co-pays and deductibles (which includes a 20% co-insurance fee in addition to a monthly share of cost of over $1400 before Medicaid will pick up any additional expenses), doctor visits and the costly immunosuppressant medications that I will need to take for the rest of my life. Due to these large out-of-pocket expenses, Both hospitals I am listed with in Florida requires me to have at least $12,548 in available funds at all times to be considered “financially eligible” for transplant. This figure was based on my estimated 20% co-pays and six months of my share-of-costs.
In addition to the nearly $13,000 I require to be put on the transplant list I also have to raise money to pay for my travel and lodging in the Tampa or Weston area after surgery which is just over 2 hours away from my home. Both hospitals require anyone who lives outside of the immediate area stay local to the hospital 4-6 weeks post op since the follow-up appointments are so often (3-4 times a week) and organ rejection is most likely during this critical time so driving two and a half hours several times a week on pain medication with an large abdominal incision would be impossible for me to do on my own hence why I need to plan to stay in the area for a short period after surgery.
To aid with the financial burden of my transplant expenses, a fundraising campaign in my honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based funding guidance to patients and their families for more than 30 years. All donations are tax deductible to the full extent allowed by law, are held by Help Hope Live in the Southeast Kidney Transplant Fund, and are administered by Help Hope Live for transplant-related expenses only. Please consider a making a contribution today and click the DONATE NOW button.
Thank you for your prayers, support, healing vibes, well wishes, and most of all, your generosity. I couldn’t do this without all of you and ask that you keep an eye on my campaign page or notice of fundraising events and posted updates on my status.
Love, blessings, and gratitude,
Well, well, well, long time no speak! Sorry for the extended period between updates but unfortunately nothing much has changed. I am still waiting for my match and in the meantime I am doing solo home hemodialysis 4 days a week. This involves me making my own dialysis solution using a Pureflow unit, setting up the hemodialysis machine, and then inserting two 15 gauge needles into my arm before I hook up to the machine allowing it to wash my blood for 3 and a half hours. Frankly, I'm tired. Some days I honestly don't know how I keep going and I have a terrible time sleeping because I'm so afraid I'll die in my sleep and no one will find me for weeks! Enough of the depressing stuff though! I did adopt 2 kittens who provide me with lots of entertainment and love not to mention the are good company for the times I'm stuck in my recliner dialyzing. And I am an aunt a second time over! My nephew was born a few weeks ago but unfortunately with my dialysis schedule and my car having some mechanical issues, I haven't been able to drive the 2 hours to meet him yet. I also wrapped up my studies and I am officially a Science of Mind Practitioner! I love serving my spiritual community and fellow humans by facilitating readings, meditations, discussion groups, book studies, and prayer support. So all in all, life isn't too shabby. I just need to get a better vehicle and a kidney then life will be just about perfect! ♥️ Thank you to all of you who've stuck around to follow my journey, I appreciate your support and encouragement beyond words.
Still waiting...I have been on the national transplant wait list for 5 years now with no luck. I also had an altruistic living donor (Christina) as mentioned in a previous update do what is called an "advanced donation" in which she donated her kidney as part of a paired exchange where her kidney went from Florida where she had her surgery to Connecticut and her gift spurred off a 9 person swap resulting in 9 lives being saved! Unfortunately due to my prior transplant in 2005, my antibodies are extremely high (I am 99% sensitized) so finding a match for me has been extremely difficult. Normally during a paired exchange, I would have gotten my transplant at the time my donor had her surgery. However, due to my being difficult to match I have received the equivalent of a coupon (a voucher) for a kidney from the National Living Donor Registry once someone enters the pool of living donors who matches my blood type and antibodies. Despite the odds being stacked against me, I am trying my best to stay positive, live life to the fullest since tomorrow is certainly not promised, and hope my perfectly matched donor is on its way! Thank you all for your continued support and prayers, I truly appreciate it! <3
Orlando Florida, February 22nd, 2019— Melissa Tuff from Cape Coral, Florida will join other advocates from across the country to push for early detection, living organ donation, and more funding to fight kidney disease at the 6th Annual Kidney Patient Summit in Washington, D.C., on March 4th and 5th. She is joined by 11-year-old singing phenom and kidney transplant recipient Angelica Hale – will serve as representatives of the National Kidney Foundation (NKF) on Capitol Hill as they meet with lawmakers to inspire action for kidney disease. The event, led by the NKF and carrying the mantra “My Kidneys, My Life,” brings together members of the NKF Kidney Advocacy Committee and advocates from the Alport Syndrome Foundation, American Association of Kidney Patients, and the PKD Foundation.
Advocates representing nearly all 50 states – learn who they are – will share their stories and urge Members of Congress to support public policy priorities which advance CKD prevention, early detection, treatment, research, and access to transplants, including living organ donation.
“We are proud to send our dedicated, volunteer advocate to the nation’s capital to stand up for all people with kidney disease by speaking directly to our elected officials,” said Savanna Lanza, Executive Director of NKF Serving Florida. “There’s no substitute for a patient or organ donor making the case to lawmakers in person about why kidneys are vital to sustaining health and demonstrating why their help matters.”
Angelica Hale, the first-ever NKF Kid Ambassador, and her parents are returning to the Summit in continued support of NKF’s legislative priorities. At age 4, Angelica’s kidneys failed. Her mother, Eva Hale, donated one of her own kidneys to her daughter to save her life. Today, both mother and daughter are healthy.
“I’m so proud to go back to Washington D.C., to bring attention to kidney disease as NKF Kid Ambassador for a second year,” said Angelica of television’s America’s Got Talent fame. “My mom is my hero, because she brought me and my dreams of singing back to life. I’m glad I get to be a hero by helping kidney patients like me, so they can reach their own dreams!”
On Tuesday, March 5th – Day 2 of the Kidney Patient Summit – Angelica will be available for media interviews from 7 a.m. to 10:30 a.m. (please arrange in advance with NKF contacts noted above). She
will sing at the Summit’s annual Congressional Awards Reception, which will be captured for Facebook Live.
“I’m inspired by the advocates who travel each year to the Kidney Patient Summit,” said Kevin Longino, CEO of the National Kidney Foundation and a kidney transplant patient. “They continue to help push for legislation that would improve the lives of millions of Americans who are living with or affected by kidney disease. Kidney patient advocacy is a critical part of our work at NKF. It gives voice to patients and families as they speak personally to their Members of Congress to make sure they are not forgotten.”
The Kidney Patient Summit is focused on individuals who have kidney disease, dialysis patients, living donors, family members and caregivers, all united by the affirmation and hashtag “My Kidneys, My Life” (#MyKidneysMyLife) to underscore the direct relationship between having at least one healthy kidney and living at all. Advocates will emphasize this message during personal meetings with their respective lawmakers. The Summit opens Monday, March 4th with a training meeting of Kidney Advocacy Committee members, their families, and care partners, who will use their collective experiences related to kidney disease to champion NKF’s legislative priorities.
Whether traveling from far away or locally; or by air, rails, bus or car, the Kidney Patient Summit has become a must-attend event – especially for kidney patients despite constant health challenges, medical appointments, and reliance on dialysis. Event organizers work personally with patients well in advance to help accommodate any special needs they will have while staying in Washington, D.C. This includes setting up on-site or local dialysis treatments, shipping dialysis supplies to the hotel, providing refrigerators in rooms for medications, allowing wheelchair or scooter access, and addressing dietary requests or restrictions.
Kidney Disease Facts
In the United States 30 million adults are estimated to have chronic kidney disease—and most aren’t aware of it. 1 in 3 American adults are at risk for chronic kidney disease. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history. People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease. African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure).
The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding organization dedicated to the awareness, prevention and treatment of kidney disease. For more information about NKF visit www.kidney.org.
Houston, we have a donor!
Yes, that's right. A wonderful angel by the name of Christina Grace has come forward through a Facebook group where we share our mutual love for one of the most positively influential bands of our time, the Dave Matthews Band.
Oddly enough we were brought together by a post regarding another members comment about how they "gave up a kidney" for a particular concert poster. I made a post stating that those of us who actually need a kidney don't find those kind of comments funny and that I had one of the aforementioned posters if anyone were really willing to come up off their kidney for it. A piece of paper in exchange for my life seemed too good to be true but indeed it got the attention of this wonderful woman who is not doing it for the poster and in fact we have created a fundraising group where other members of our "DMB Family" have contributed items to be raffled off with the proceeds benefiting my Help Hope Live campaign.
Christina is scheduled for her first round of testing March 21-22nd at the Cleveland Clinic in Florida which she will have to travel from her home in Rhode Island for. We have been approved through the National Living Donor Assistance Organization which will help with some of her travel and lodging expenses but we decided it is better to be ahead of the game so we created the fundraiser group on Facebook to preempt any financial reasons that could delay this transplant. With me not having any family in Florida and being over 2 hours away from the hospital itself, I have to stay in the Weston area as well after the surgery for about 4-6 weeks as I will have 2-3 clinic visits a week to stay ahead of any possible rejection of the organ during that time. Unfortunately I do not qualify to stay in their transplant housing so I am expected to pay for my housing arrangements out of pocket. As you can imagine, 4-6 weeks in a hotel or Airbnb even is quite costly which is why this fundraiser benefiting Help Hope Live is necessary. The last thing either of us want is to run into something as simple as a financial constraint that prevents this process from going forward as quickly and easily as possible. Not to mention the costs to maintain the organ for the rest of my and its life which is another thing neither of us want to have to stress about. So please consider joining the group on Facebook and sharing with your friends, or making a contribution directly to my Help Hope Live campaign. Thank you so much and please continue to keep me and my donor both in your thoughts and prayers! If this is not in link form, simply copy and paste the following into your web browser to be taken to the Facebook group. www.facebook.com/groups/464085524129935
PRAYER TEAM ASSEMBLE!!!
An amazingly selfless angel has come forth to express her interest in being a paired exchange kidney donor! Cleveland Clinic will be sending her an itinerary and she will have to come to Florida March 21-22 for testing. While she will still have to undergo a myriad of tests to ensure she is fit to donate we are already seeing this as complete and that she is approved for donation. Now, what does this mean for me? It means that if she is indeed not a direct match to me that she will still donate her kidney to save another and they will find someone else to donate who matches me. We are going to do some fundraising through HelpHopeLive, the organization currently holding all of my fundraising monies to cover her travel expenses because in my opinion someone willing to save someone's life should not have to pay a dime out of their pocket when they are risking their life for another. If you would like to help please consider making a tax-deductible contribution toward our expenses here. Any amount is appreciated and helps to get me that much closer to a transplant.
So in closing I ask that my prayer partners please join me in knowing that there is just one thing happening here and that is the Divine right action of the One creative source back of all things, God. I am an Infinitely blessed child of God, a part of the whole, and there can be no separation from my good and my God. I know this same truth for every one and every thing in this wonderfully amazing thing we call our life experience. I confidently realize that the perfect unfoldment of this process has already begun in the One Mind and that my truth; whole, perfect, and complete health is revealed with ease and grace. I realize that there is no limit to the good I receive and that good fills me up and overflows out into the cosmos in the forms of love, support, financial abundance, and joy to those around me. As I give graciously and tap into that unlimited source I also receive abundantly. I know that everything necessary for this procedure to take place is in perfect alignment and for that I am so very grateful. I am immensely grateful for the giver and for the gift. I am grateful for the support and unconditional love of which I am both the receiver and the messenger, and grateful for the lessons learned which allow me to go forth faithfully knowing that each step is guided by the Infinite Intelligence of God. I trust that as I release my thoughts and words to the Law of Mind it is acted upon immediately and this energy is amplified and multiplied by those who join me in prayer and together we can anchor this in certainty by affirming And So It Is, Amen!
It's been a while since my last update and I apologize for that but I have been going through a lot as of late so posting hadn't been a priority with everything else I've had on my plate. Since I have had kidney disease for over 20 years now my parathyroid glands decided to give me a big F-U and stop responding to the medications I was on to suppress their hormone production. There 4 glands located behind and unrelated to the thyroid regulate our blood calcium levels; too much parathyroid hormone causes our bones to release calcium and that calcium will find its way into places it shouldn't be like arteries and organs. This abundance of calcium causes calcifications to form that can harden arteries, veins, valves, and entire organs which renders them useless and they fail. Too little calcium can cause its own problems though so it is a delicate tightrope we walk to keep these things in balance. All that said I had to have mine removed. This happens with about 10% of chronic kidney disease patients so it is not entirely uncommon and even after my first transplant my parathyroid hormone levels never entirely returned to normal. Since medications we not affecting them anymore surgical intervention was the next step. On September 6th I underwent a total parathyroidectomy with reinsertion of a portion of one gland back into my left arm, because I still need SOME parathyroid hormone...just not the amount my 4 overactive glands were producing. They put one or a portion of one back into the arm so they can access it easier should they have to take more out in the future. So an incision was made into my neck, just below my throat where the neck meets the sternum. (Pictures will be posted if you care to see) All 4 glands were successfully removed and 1 was reimplanted through an incision made to my left forearm. Both were very sore immediately following the surgery and it has been 8 days since I had the procedure and I still have some pain in my arm and neck. My calcium levels have to be monitored closely because now they run too low and that can cause seizures and even death! For the time being I have to eat 20 Tums (yes, the antacid) per day in addition to a twice daily calcium-based prescription medication. Initially I was kept in the hospital post-op for several doses of IV calcium because the levels drop so quickly after the glands are removed. Now I have to pay close attention to the signs of low calcium so that I don't experience a seizure while I am home alone (which is literally ALL THE TIME!) so as you can imagine, I worry. The last thing I need is to have a seizure when I live alone and have all tile floors! I could drop to the ground and be seriously injured and it could be days or weeks before anyone would even know! That is a big reason as to why I put this surgery off for years and years, because I was afraid of the possible complications over the long term. Fingers crossed I have only had one drop in my calcium since being discharged and my Tums/medication doses were adjusted to hopefully compensate. I have had some symptoms of low calcium since surgery like terrible leg cramps while on the dialysis machine so I am basically getting zero quality sleep since the cramps wake me from a dead sleep and I have to walk around until the let up. Hand and mouth numbness are symptoms as well which I've thankfully only experienced once. So...between that and just being hooked up to this machine 11 hours a day I haven't felt much like sharing the depressing reality of things as of late. I'm trying to focus on regaining my strength and staying healthy enough to remain active on the transplant list which is not always easy...but every day I get up and do my best to put on a happy face and remember that things could ALWAYS be worse! Someone somewhere is wishing for the things I still have control of. I can still use my legs and arms, I can still see, speak, and breathe on my own...all luxuries when it comes to a life of chronic illness! One of the lyrics from a song by my favorite band (Dave Matthews Band) says..."there's bad times, but that's okay...just look for LOVE in it"and that is something I live my life by...always look for the LOVE in things! If I had never experienced a chronic illness such as this, I may not have met some of the wonderful people that I have over the years. Those who continue to inspire and amaze me with their poise, strength, and perseverance...not to mention constantly restoring my faith in humanity. I am still here because of people like them, and people who care enough to read & share my updates/rants like YOU! So, thank you!
Well yard sale Day 1 was a fail. Made $8 but then it decided to rain overnight which blew my canopy away and the tarps I had covering the sale items leaving some of them damaged and the canopy I had borrowed was destroyed and I will have to replace that. It is still raining so I have not been able to open up for Day 2 which means today may also be a bust. I am super frustrated that with everything else I have going on this one thing couldn't just go smoothly. Hopefully tomorrow will be a better day. :(
My dialysis bills are really cutting into the amount Help Hope Live has listed that I've raised which ($17,000+) does not reflect what I actually have available. If I drop below the minimum of $12,500+ I will be removed from the kidney wait list until I can raise balance back to the amount required by Tampa General. Dialysis is costing me anywhere from $3,000-4,000 per month so in order to not decrease my balance to the point of being removed, a few of those bills have went unpaid. I currently owe DaVita Dialysis over $9,000 which disappoints me considering I was finally getting my credit score back on track so that I could possibly move or finance a newer and more reliable car after I get my transplant.
If you have anything extra to spare, I would so appreciate it more than you could possibly know. The donations are tax deductible to the full extent allowed by law, unlike GoFundMe, and the money stays in the Help Hope Live Southeast Kidney Transplant Fund where I can only submit medical bills, rather than GoFundMe sending a check every month and you never know if people are really using it toward their medical expenses.
If you are unable to donate yourself, please....PLEASE....share my page publicly and perhaps someone else, ANYONE else will find it in their heart to help out by making a financial contribution or even better maybe after reading my page they will consider being tested to give me the gift of life. ❤
Thank you all in advance!
It has been a rough few months. After a month and a half of peritoneal dialysis I was unfortunately forced to stop and have a different access placed to begin hemodialysis. Between mid-November mid-December I had 3 surgeries to my abdomen to try and fix whatever the issue was that was causing the dialysate fluid not to drain properly. After ten days without any form of dialysis at all I was admitted to the hospital in an hypertensive crisis and I had a chest catheter placed to start emergency hemodialysis treatment. It was my hope to avoid ever going back onto hemodialysis because I remember vividly how poorly I felt after every treatment. I spent 5 days in the hospital because they could not find a spot for me at an outpatient dialysis clinic near me at first, and since I drive myself I need to be somewhat close to home. My nephrologist and I have been discussing a plan in which I will allow my stomach some time to heal from all of the surgeries performed over the last couple of months, work to get my albumin levels up (this is a measure of protein), and then in 4-6 weeks we will attempt peritoneal dialysis again but the overnight cycler version with the hopes that the slower treatment overnight will reduce the strain on my abdominal wall thus preventing any leaking as I had before. People ask me all the time what the big deal is about doing hemodialysis in-center as opposed to peritoneal at home is and all I can say is that it is the way you feel that makes all the difference. With hemodialysis, you are going into a clinic in a strip mall sometimes where technicians of limited medical experience are hooking you up to a machine which removes your blood at a very fast rate and runs it through a filter that separates and removes toxins from it then it returns to your body partially cleaned of the build up your malfunctioning kidneys are not removing. In-center hemo is only available 3 times a week, for 4 hours per treatment max. That is all that Medicare, or any insurance rather will pay for. So at most, you are getting 12 hours of kidney function when a health kidney works 24 hours a day to filter your blood. Those who are lucky enough to have a support person at home can do at-home hemodialysis which is better for patients as it is more like their natural kidney function. Peritoneal is the next best thing to home hemodialysis with the exception that you are not using blood as the source of cleaning, it is the peritoneum which acts as the filter to remove the toxins. The patient hooks up to a cycler at night and fluid is filled, left to dwell, and then drained all by a machine and when the patient disconnects in the morning they are done dialyzing for the day. This frees up a lot of time, and allows one to live a more "normal" life. I could go back to work perhaps, and travel again maybe. So right now, I am struggling a lot emotionally and physically. I have two catheters now so my body does not even feel like my own, and I cannot shower, swim, or bathe with them due to the high risk of infection. Even I still take things for granted like baths because I did not even think to take one the night before I had my first catheter placed! My local newspaper just printed another story as a one-year follow-up to my initial interview with them discussing my search for a living kidney donor and the money I had to raise even to be placed on the list for a deceased donor organ and I pray a match comes out of that round of people who are interested in being tested. Hemodialysis is certainly no way of life for anyone and I hope that one day research is completed on the artificial kidney, or that we are able to find a way to grow or regenerate kidney tissue using the stem cell technology being used in similar research now.
Thank you all for continuing to follow my progress. I will try much harder to update more often, and post more videos to keep this page active. Dialysis is not cheap either and I have now had to start submitting these expenses to Help Hope Live which I had honestly prayed I would be able to save all of these funds for post-transplant expenses, not dialysis treatments and subsequent hospital stays.
Love & Blessings,
Well it is nearing the end of November and I suppose it is time for another update. I wish I had more upbeat news to report but since my creatinine has still been increasing I had surgery on November 3rd to place my Peritoneal Dialysis catheter in preparation for my return to life support. During my surgery I had a couple other procedures done in order to make room for the catheter and ensure it's proper placement within my abdomen where I have already had several other surgeries. I woke up in excruciating pain and for the several days that followed I was unable to keep anything down due to a reaction to the anesthesia and the pain meds prescribed post op. It has been 26 days since surgery and while the site itself is still tender, we have began to flush the cath to ensure it patency and I will begin training this week to start my treatments at home 4 times a day. I had a caregiver/roommate with me to help during my surgical recovery and this huge life adjustment to home dialysis but unfortunately they had their own personal issues and their offer to help was more self-serving and not out of the genuine care and concern of a friend. It became too much to deal with and it became a source of stress and strain on my condition causing my blood pressure to increase significantly so now I am back doing this on my own again (and oddly enough my BP has returned to normal!). My profile picture is from my first flush and exit site cleaning training a couple weeks ago. As you can see my drain bag was pink and it's not supposed to be, it should be pretty clear. But because I was having to get up and take care of myself and clean for two people within days of my surgery I kept rupturing the clips holding the catheter in place which caused some internal bleeding. So far I seem to have a very supportive team at the Davita Home Dialysis Suites so I think that I will be just fine in caring for myself physically, however finances are always a concern. As I mentioned before I do not qualify for Medicaid for some ridiculous backwards reason so I am responsible for the 20% that my Medicare does not cover. In-center hemodialysis costs and average of $72,000 per year of more while home Peritoneal dialysis runs about $53,000 which leaves me with about a $150 bill per day not to mention the additional electricity costs for the equipment, medications, and uncovered supplies. I also believe I mentioned before that I am on social security disability not only due to my kidney disease but also due to the effects 21 years of kidney disease has taken on my body. Over the years I have also been diagnosed with osteoporosis, anxiety, metabolic acidosis, chronic anemia, depression, restless leg syndrome, left ventricular hypertrophy, mitral valve regurgitation, hyperparathyroidism, migraines, 2 herniated discs in my back, and there is probably more but I just can't and choose not to dwell on them anymore. The average life span of a patient on dialysis is 5 years and I have already spent 9 years on dialysis previously to be returning to it again, no matter how positive I try to stay, the statistics are frightening. So my main focus is trying to stay positive while searching for a living donor and staying healthy enough to receive a kidney. In closing I felt it appropriate that today being "Giving Tuesday" and all that I update you and ask that you consider taking advantage of this ONE DAY in which credit card fees are waived and 100% of your donation goes toward my medical expenses. Also, just a sort of FYI...the number on my fundraising indicator depicts how much I have raised over the lifetime of my campaign, they do not update it as I send in medical bills for payment so $16,000 is not an accurate number. I have to keep a balance of at least the original $12,548 or Tampa General could remove me from the list as this was a requirement for me to have prior to even being listed. I have had to submit some of my larger bills to them so I am probably nearing dropping below that $12,000 mark which is why it is so important for me to keep campaigning for myself since I do not have the support of others to do it for me. I want to live, scratch that...I DESERVE to live! And no life should have a cost put on it so I am determined to continue to fight tooth and nail to ensure that I do not have to worry about them kicking me off the list or denying me treatment because of financial resources. My long history with kidney disease has ruined my credit so getting a loan through care credit or obtaining a credit card with a high enough limit to help cover my medical costs is next to impossible right now, also with me not working I get declined for everything I have tried. My fundraising pages on here and GoFundMe are my main source of assistance right now since I seem to not qualify for anything else I am surrendering to God and the kindness of strangers for my highest and best to come to fruition. So even if you cannot personally take advantage of the no fee credit card day, PLEASE take a moment out of your day to perform this random act of kindness in my honor. If you care about me at all PLEASE share this update, share my kidney page, request a flyer from me to set up a donation jar at your office or place of business, I just ask that you do SOMETHING! Honestly and truly ANYTHING and EVERYTHING helps because as each day passes, my medical expenses increase and my health decreases. You never really know how broad your reach could be and you could even be the one responsible for putting me in touch with my future donor by the simple act of sharing my request.
Thank you all so much,
Just got an update from my kidney doctor regarding my recent labs.
Kidney function- 12%
Peritoneal Dialysis Catheter Surgery- November 3rd
Dialysis- Scheduled to start within 4 weeks of catheter placement
I am now in the final stage of kidney failure and must return to dialysis as soon as possible if I would like to continue to walk the land of the living.
I am praying that a kidney donor is found soon as the previous 9 years I spent on dialysis were an absolute hell that I would not want anyone to have to experience, much less go through it more than once in a lifetime.
This news comes as I am just about to rejoice in my 11th year of freedom from dialysis since tomorrow, October 7th, is my transplantiversary. Many thanks to my donor and his family for the years of life his selfless gift has allowed me to experience.
Back to square one.
Thanks to all of you who have continued to follow my journey and I appreciate all of the support I have received thus far. Starting dialysis and being alone will be a HUGE weight on me so I rely greatly on all of the kind words of support and encouragement to keep me going. I will update more as I get more details surrounding the surgery and my plans to return to dialysis.
Love and blessings,
Hey everyone, time for an update on my quest for a kidney. Unfortunately since I have not found a donor and my labs have started getting worse, I have been referred to the surgeon who will place my peritoneal dialysis catheter and also to the dialysis center where I will receive my training to be able to perform my treatments at home. This requires a sterile area which means my spare bedroom/office will need to quickly be converted to a treatment room and my entire house must be cleaned and sterilized from top to bottom before my equipment starts to arrive. Since I do not have any place to store things in my unit I have to sell off a lot of personal items, and things that I had already planned on listing in my eBay store. I created my store, "Second Chance Creations and Resale" to try and raise more money for my transplant by selling items that I no longer use or need as well as items donated to me for fundraising. With having to start dialysis soon it is imperative that I clear out as much as possible as soon as possible to make room for the months supplies they send which will take up most of the room anyway. So if you are interested in taking a look at what I have to offer, while helping me raise more money to pay for my treatments and transplant please visit- stores.ebay.com
I am keeping this update short as I will be posting more when I find out my surgery date for the catheter placement next Wednesday. Please continue to keep me in your prayers as this is a lot for me to take on on my own.
Love & Blessings,
There's been a lot going on in the last month or so, so here is your update on how things are progressing. As my previous update mentioned I was admitted just under a month ago for a hypertensive crisis. I spent 3 days in the hospital at a cost of $16,006.45 of which I am responsible for $3201.29 The first week or two after being released were full of med changes and lots of rest since my blood pressure was not running too low due to the wrong doses of medication being prescribed. Although it appears everything has stabilized I am still being referred to cardiology for more testing to rule out that the spike in pressure in addition to other symptoms are not cardiac in nature but instead just related to my kidney failing.
Shortly after my recovery from the hospital stay I had to have the one wisdom tooth removed that was a concern for infection and would have eventually gotten me pulled from the transplant list. The pain only lasted a couple days thankfully and the soft foods/no straw part was probably the worst of it but I lost a couple of pounds out of the deal so I consider that a win!
Lastly, in more uplifting news I have someone locally being tested! I received a request for me to have my blood drawn so that they can do histocompatibility testing against the person being tested. Prayers are appreciated for both my potential donor, and for the results that this angel is compatible and willing to donate.
Thank you so much for your continued support, prayers, and blessings throughout this lengthy process! I couldn't get through this without all of you wonderful people and of course God who brought you all into my life.
Love & Blessings,
This is Melissa reporting to you live today from Gulf Coast Medical Center in Ft. Myers, Florida!
I had to come to the ER last night due to a hypertensive crisis accompanied by chest pain and a migraine. My blood pressure had been running in the 180/120 range with a really low pulse rate in the 40's for a few days and I started feeling the effects of it yesterday morning. I tried taking more of my blood pressure medicine, mediation, and even just resting but nothing was working to lower it and my doctors were concerned that I would experience a cardiovascular incident or a stroke so I will be here for a few days of treatment, medication changes, and testing. When your blood pressure is high it can damage the vessels in your circulatory system as well as cause organ damage because they are often depleted of their necessary blood supply. So because of my blood pressure being so high, my creatinine (a level of kidney function) has also increased which lowered my kidney function even more. I'm trying my best to remain positive and pray that a kidney will come soon so that I can return to a somewhat normal life. No matter what I do my body gets stressed from dealing with this illness and all of the other conditions that stem from my rejection of this kidney which results in situations like this that require emergency treatment. It's hard when you're sitting in a hospital room alone not to think about how much this stay is going to cost me. 20% of the ER, chest x-ray, ekg, echocardiogram, 24 hour telemetry monitoring, a private room because I'm immune compromised, and then all the medications I'm being given and every doctor that comes in even if it's just to pop their head in the door and say hello that's at least $200. And they wonder why I had a hypertensive crisis!! So with all that being said I packed a book, my journal, and a few other things to keep myself busy considering I knew I would get admitted and be bored here by myself if I hadn't thought ahead to bring some things to keep my mind off being here. Tomorrow is a new day and I remain focused on praying it will be even better than the last.
Love & Blessings,
Had to go see an orthodontic surgeon the other day because I have a wisdom tooth that has started to decay. This is not typically a big deal for the average person but for someone like me who is on immunosuppresants it is a HUGE deal. Any potential sources for infection have to be addressed immediately because of me being on the transplant wait list now. If for whatever reason I were to develop an infection, I would be removed from the wait list until the infection is completely cleared and I just can't take that risk. Although oral health is very important for those of us with transplants and those who are waiting, Medicare does not cover dental so we are 100% responsible for the costs of whatever treatment is necessary. In my case I had to pay $79 for my first visit, $257 for the orthodontist consult and panoramic x-rays, and I'll be paying another $323 on the 22nd to get the one wisdom tooth removed since getting them all removed would be taking too much away from my transplant funds. Although my fundraising indicator does not show it, I have been having to use funds from this account to pay for all of the testing and procedures that have been required during my pre-transplant workup. I worry that with all these additional expenses I will deplete the account below the $12,584 that was required by Tampa and I will be removed from the list. The added stress has sent my blood pressure through the roof and that is something that I also had to make an emergency appointment with a partner of my nephrologist for because I am at risk for a stroke right now and maxed out on the dose of my current blood pressure medication. Although I feel like I am not stressing inherently my body still is because my condition is always at the back of my mind, eating away at me even when I try to ignore it. Everything related to this process of getting listed has been a challenge and being underinsured is the root cause of it all. It is unfortunate that we boast about being the greatest country in the world yet people are dying every day due to red tape and lack of access to healthcare. As if it's not bad enough that someone has a chronic, debilitating medical issue but then they have to fight tooth and nail (literally) to get necessary procedures, tests, and medications covered by their insurance if they even have coverage. Everyone should have a right to reasonably priced medical, dental, and vision insurance...EVERYONE.
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,
"If you give, you begin to live." - Dave Matthews
Struggling over the past year to get on the transplant list has taken a huge toll on me emotionally. As of late I have had to begin taking antidepressants and anxiety medication because of the overwhelming weight of dealing with all of this on my own. On my birthday this year I will have had this disease for 20 years and while I am so very grateful for the nearly 11 I have had off dialysis thanks to the selfless gift of a man who chose to leave his organs behind for others to survive in his passing, the thought of having to return to dialysis is both petrifying and devastating. I am incurring many more medical expenses than I had initially imagined because of all of the additional testing and procedures that I have had to have done prior to being listed, I have had to increase my goal which I hated having to do especially since I am still not listed yet. My case is going back to the medical board today so that does give me hope that at least I will begin accruing time soon, it does not change the fact that I will be having to make some very drastic life changes soon as well. I am having to liquidate most of my belongings because I need to empty out an entire room of my rental to house the peritoneal dialysis supplies when they begin arriving. My ability to workout and enjoy the things I love like swimming and amusement parks will also be coming to an end due to having a catheter placed in my stomach for dialysis. Not having parents, close friends, or even a significant other to just be here for me and reassure me that everything will be okay is very difficult. I hate to burden people with my problems because I am not the only one who is experiencing trials and tribulations in their life so I internalize a lot of my concerns and stress. I do have a therapist that I talk to but if I am being honest, the only thing that helps with is the ability to vent and break down in front of someone I don't have to look at everyday. Sometimes I just feel so weak for succumbing to my emotions because I know that I am stronger than that but then I remember how nice it was to have a partner to hold my hand through the difficult times and let me know that I was truly loved and never alone. To most of the people I know I am always cheerful, wearing a smile, and no one would ever really know the battles that I fight within on a daily basis. That is why I chose to post this video. I think I finally needed to come clean to everyone (including myself) as to just how hard this all is on me. Not only am I faced with a failing kidney but I just recently went through a devastating breakup, my car is breaking down left and right, I am in the middle of an appeal with Social Security who is trying to take away my Medicare and my only source of income which is the little bit that I get from disability, and I am dealing with this all on my own. The uncertainty in my life right now is overwhelmingly scary at times which triggers my panic attacks and I am trusting in God that all of this is a part of a much bigger and better plan for me but right now I just feel like I am stuck in a rut that I am trying desperately to dig myself out of. Not everything is as it seems and many people look at my smiling pictures on Facebook or see me out in public and think that just because I look "okay" that I am just that when sometimes that is the furthest from the truth. We all wear masks to hide how we truly feel, mine however has just seemed to become more of a 24/7 accessory which is getting really old. So although I am an emotional mess in this video, I urge you to please take a look and try to understand where I am coming from if even for just a moment. And then head on over to www.DonateLife.net to register as a hero if you are not already signed up. Thank you all so much for your understanding, kindness, and support.
Love and Blessings,
TEAM TUFF T-SHIRT SALE -- Be a part of "Team Tuff" by wearing one of these fun t-shirts I designed to help spread the word about my search for a kidney donor. Please click www.booster.com Only available for a limited time so buy yours today! Thank you for your continued support.
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 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 possibly 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 visit www.booster.com
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 so 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,
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.
Love & Blessings,
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 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 include returning back 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 article you can find it here ---> www.news-press.com 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,
Having a strong support structure in place is just one of the many requirements to be deemed eligible to go on the transplant wait list. In my case since I am not married, I do not have a close relationship with my family and besides that I live over 1400 miles away from them anyway. Many of those whom I have asked for help or those who have offered are only available to assist on weekends which is wonderful but unfortunately my follow-up appointments immediately after transplant will be on weekdays several times a week and they are 2 and a half hours away from my house one way. Because the person I was dating who was also my listed caregiver just moved out my only option right now is to plan on relocating to Tampa and staying in a hotel for the 6 weeks following surgery. Since I also no longer have a caregiver to stay with me after surgery I will also have to hire a home health nurse to assist me during my stay. This is why fundraising through HelpHOPELive is so important for me. These are expenses I never thought of nor had to incur with my first transplant. I was married so I already had a live-in caregiver and because he was working full-time we had good insurance so I did not have to raise money just to get on the list, and I did not have to feel like I was fighting this battle all on my own. The support and generosity of all of you is what helps me get through the day. You give me the hope necessary to believe that I can and will get through this. Thank you all so much.
With great love & gratitude,
Wow. I am so overwhelmed and obviously incredibly blessed. I just checked my page today to see if I had met the milestone for the "Challenge Grant" that is offered by HelpHOPELive and then I saw my fundraising indicator. I am at a loss for words. Just a few days ago I was at $11,855 and thinking how grateful I was for how much help I have really gotten over the last few months and now look at it! $14,475! I cannot believe how close I am to goal thanks to all of you! Here I was starting out my day complaining because I have to go in for two blood draws today and at my first one (my monthly labs for my kidney doctor) they almost turned me away because I have an outstanding balance for a test that Medicare didn't cover but is required for me to get on the transplant list. My second appointment I have to drive to Naples which is about an hour away in a 20 year old car with a cracked head gasket and just pray that it lasts me until I can try and find another one to purchase for under $2000 which is all I can afford at the moment. I was lucky enough to find this car for less than that when I first moved to Florida and it has more than earned it's worth as I have put nearly 70,000 miles on it over the last 4 years. Driving back and forth to Miami, Naples, and Tampa for medical appointments several times a month really adds up over time! I will be truly grateful to find something like this vehicle again as it has been a really great, dependable vehicle for me and I was only the second owner. So now I am not only on a quest for a healthier kidney, but also a healthier car! Even with it seeming like things are piling up I remain positive that God will see that all my needs are met with ease and grace. Thank you all for your continued prayers, thoughts, and support. I remain forever in debt to your kindness.
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 a 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 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. 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. 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,
My story was featured on the front page of the local newspaper! I'm so happy that people are learning from my experiences with kidney disease and transplant. My hope is that by putting myself out there that more people will be educated on the importance of organ donation and the need for living kidney donors in addition to just how expensive it can be to live with a chronic illness. If you're interested in reading the article it can be found in the "News" section of the HelpHOPELive site, or by clicking here ---> www.news-press.com
Just a reminder when purchasing all of your last minute holiday gifts please consider giving the ultimate gift that cannot be found on a shelf in a store or under any tree. It is the gift that continues to give for years after it is received, and no price can be placed on it. It is the gift of life.
Please consider this giving season to give of yourself. Register to be an organ and tissue donor.
Thanks to my family over at the Center for Spiritual Living Cape Coral and the Halloween Benefit/Party they just held for me, I'm just under $2500 away from the $12,584 needed to be wait listed for a new kidney!!! (although all of the checks have not cleared and posted to reflect on the site as of yet give it another week or so) this of course includes funds raised previous to the benefit via my own efforts through GoFundMe and craft sales but the largest portion was brought together by my local friends and spiritual family and for that I am so inexplicably grateful!
Also, some of you may be wondering why my goal is set to $20,000 and not just the $12,584 Tampa General Hospital requires me to have before I get approved for the wait list and here is the answer: I was advised by my fundraising coordinator to include unanticipated expenses such as travel to and from the hospital, lodging, and any other uncovered expenses that are still related to the treatment of my condition. In addition, HelpHOPELive offers incentives for reaching "mile markers" in your fundraising, those mile markers are at $10,000 & $20,000 and for reaching them the benefactor will receive an additional $1000 toward their campaign. The $12,584 I need to raise prior to being placed on the active wait list is covering my transplant surgery and 6 months of prescription expenses alone. My treating hospital is 2.5 hrs away from my house and I have been advised that realistically I may not be able to come back home immediately following my transplant. I am required to be in Tampa at least three days a week for the first month to month and a half post transplant for rejection monitoring, labs, and medication adjustments. According to the hospital guidelines for patients outside of their immediate treatment area (within 1 hour or 50 miles) I may be required by the transplant center to stay in Tampa, or pay for a private health nurse and/or transportation to and from the hospital for the first few months since I will be unable to drive. Anyone who knows me personally also knows that my 20 year old car with 180,000 miles on it is just not going to be able to make all of those trips so I will have to either pay someone else to drive me to my follow-ups (5 hours of travel time roundtrip 3x a week), or I will have to relocate to somewhere near the hospital for 4-6 weeks following surgery. Also, any money that I raise which is above and beyond my own medical expenses will remain for other patients to use when I no longer need it, something that is also very important as I want to be able to help others in the same situation as me.
Hopefully that clears things up for some of you whom have been curious but didn't want to ask, or for those who wanted to ask but didn't know how. Unlike many other fundraising sites HelpHOPELive works directly with the transplant center and all money raised does not come to me, it is held by HelpHOPELive who then in turn pays my submitted medical expenses all of which are verified by my financial coordinator at the hospital.
So in closing, thank you to everyone who has participated thus far! Whether you donated your time, your talents, or your treasures to help me reach this point in my fundraising, I am eternally grateful. None of this would be possible without you and I love you dearly for your support! Now, let's keep the love going and we can meet or exceed that goal so that others will also benefit from the same love, kindness, and generosity that I am blessed with every single day!
WOW! Our Halloween FUNdraiser was not only a ton of fun, it was also a BIG success! We have raised over $4000 so far with a few more contributions still pending! This makes a HUGE dent in what I have left to raise in order to be wait listed! I want to send a gigantic THANK YOU to everyone who helped make this event possible, THAT MEANS YOU! Even if you have not been able to donate but you have stopped by my page and simply read my story then kept me in your thoughts...YOU HELPED MAKE THIS HAPPEN!
Also a big thank you to all of our sponsors and private donors who contributed items to be used as prizes and in the silent auction! Our success depended on your kindness and generosity!
Check back for a finally tally in about a week!
Love, blessings, and eternal gratitude,
Our first major fundraising event is set! I met with members from my spiritual center today to finalize details on the event they will be hosting on Halloween to benefit my kidney transplant fund. I am so grateful and blessed to have such a wonderful group of loving, kind, supportive souls on my team! Now I just need to work harder on finding my match! No potential candidates are being tested as of yet, but with the window decal that is on it's way I am sure that will help to get the word out some more and the kidney donor that I so desperately need will be found. Thank you to everyone for their words of encouragement and support, I appreciate it more than anything!
Please contribute to Mel's campaign so she can get her kidney transplant.
I would urge you to make a donation for Melissa. No one should have to worry about paying a medical bill for a procedure that would keep you alive
Please give generously to Mel's campaign
I am praying for you, Melissa. I am having trouble paying my bills, but will do my best to send a check to help....i care a lot....i am so sorry that you need another transplant sending you prayers, love and hope...Christina
My heart goes out to you i hope my donation can help i will keep you in my thoughts and prayers and will continue to follow your progression
it wasn't much but I'm glad to donate. Big hugs sister.
Dear Melissa- Your story captured my heart. May your miraculous attitude produce a miracle of its own. My prayers are in your ear, and the check
REALLY is in the mail! Marge A., Estero Fl
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Melissa Tuff
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087
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