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,
Nov 29, 2016
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, Melissa
Oct 06, 2016
Just got an update from my kidney doctor regarding my recent labs.
Creatinine- 4.5 Kidney function- 12% Peritoneal Dialysis Catheter Surgery- November 3rd Dialysis- Scheduled to start within...
Sep 16, 2016
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...
Aug 08, 2016
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...
Jul 12, 2016
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...
Jul 11, 2016
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...
Jul 04, 2016
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...
Jul 01, 2016
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...
Jun 02, 2016
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...
Jun 01, 2016
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...
May 24, 2016
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...
May 03, 2016
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...
Feb 19, 2016
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...
Feb 12, 2016
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...
Feb 04, 2016
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...
Jan 20, 2016
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...
Dec 22, 2015
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...
Nov 13, 2015
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...
Nov 02, 2015
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...
Sep 06, 2015
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....