Goodbye Parathyroid...Hello Lifetime of Tums

Over the last 22 years I have been told many times that I should have my parathyroid glands removed. The reason being that due to my kidney disease, and love of high phosphorous foods my parathyroid hormone levels were consistently well out of the acceptable range which over time can cause a myriad of side effects, some potentially fatal. An important part of the endocrine system, the parathyroids are 4 small glands located in the neck behind the thyroid and they excrete a hormone (PTH) which is responsible for regulating blood calcium levels. Calcium is the most important element in our bodies as it controls many organ systems, so calcium is regulated more carefully than any other element. In fact, calcium is the only element with its own regulatory system which are the parathyroid glands.

The most important thing that calcium does in the human body is provide the means for electrical impulses to travel along nerves. Calcium is what the nervous system of our body uses to conduct electricity. This is why the most common symptoms of parathyroid disease and high calcium levels are related to the nervous system (depression, weakness, tiredness, etc.) Just like the nerves in our bodies, our muscles use changes in calcium levels inside the cells to provide the energy to contract. When the calcium levels are not correct, people can feel weak and have muscle cramps. Most people know that calcium is used to make our bones strong, but this is only a part of what Calcium is responsible for. Our bones serve as a storage system we use to ensure that we will always have a surplus of calcium. Just like a bank where we constantly make deposits and withdrawals, we are regularly putting calcium into our bones, and taking calcium out of our bones in minute amounts with the sole purpose of keeping our calcium levels in the blood in an optimal range. So truly, the most important role of calcium is to provide for the proper functioning of our nervous system, not to provide strength to our bones as many of us were raised to believe.

My nephrologist recently gave me an ultimatum, get my parathyroid glands removed or she would essentially fire me from her practice and inform Tampa General of my non-compliance which would result in me being removed from the kidney wait list. As much as I dreaded undergoing yet another invasive surgery the threat of being taken off the transplant list was the kick in the ass I needed to go ahead and have them removed. I underwent the procedure on September 6th and had to stay in the hospital overnight to receive several infusions of intravenous calcium since as soon as the glands are removed blood calcium levels crash. Once my calcium rebounded to a level they were satisfied with I was discharged from the hospital and instructed to chew 3-4 Tums every 4-6 hours to maintain a healthy calcium level going forward. Tasty, right?

All 4 of my glands were removed from my neck and 1 was placed in my left posterior forearm to allow for the secretion of some of the parathyroid hormone and ease of access in case more should need to be removed in the future. Both incisions are still relatively painful, my arm more than my neck now. I didn't realize how much we activate our neck muscles in just everyday movements and I have inadvertently caused some bleeding from the incision without even doing anything strenuous. As of right now I cannot completely straighten my arm due to the swelling and pain from the placement of the gland in its new location. Also it is still somewhat difficult to swallow and I have not been able to eat solid foods just yet because it seems to aggravate my incision. My throat was and still is incredibly dry and sore which makes having a fluid restriction even more difficult because all I want to do is drink something cold to provide myself a little relief. One thing I highly recommend for anyone who may undergo this procedure is to take some throat lozenges with you to the hospital for use after surgery. I was not offered these until just before being discharged and it would have given me some relief had it been given to me immediately after waking up. I mean, they shove a tube down your throat for intubation which already causes discomfort and then combine that with the fact they are operating on your throat/neck area so it should be common sense to offer this to a patient as soon as they are woke up and taken to recovery but unfortunately not all doctors and hospitals are so forward thinking. Had I known I would have brought my own and saved myself a lot of pain that could have been prevented with a simple lozenge! Check out these gnarly pictures of my post-op wounds!

Parathyroidectomy





Reimplantation of 1 parathyroid gland into left forearm


Now I am off to buy stock in Tums and soothe my aching throat with a popsicle. Take care of yourselves and each other!

xo xo

Mel

Bonfire Campaign You Tube Intro

Check out my latest YouTube video explaining my continuous fundraising and current Bonfire t-shirt sale. Please consider purchasing one to help me spread organ donation awareness, my search for a living kidney donor, and raise some funds to aid with my medical expenses. If you can't purchase a shirt, please share the video so that hopefully others will see it and help me reach my minimum print order status of 11 shirts before May 21st. If I do not reach the minimum my shirts will not get printed. 😟

Thanks for dropping by!

Peace & Blessings,

xo xo Mel xo xo

Second Chance Creations and Resale

Currently I am on social security disability due to my failing kidney and the multitude of other conditions that I have been diagnosed with as a result of my kidney disease. As you can probably imagine with only disability as my source of income keeping my monthly household bills and current medical expenses paid is a struggle and there are times when my bank account is at zero weeks before my next check is to come. I have been selling personal items and items I create myself on eBay and in Facebook groups as a way to try and subsidize my income until I can return to work. I ask that you check out my eBay store and share it with others. Perhaps you will see something listed that you may want or need in your life! I add more items often so be sure to check back another time if you don't see anything posted that peaks your interest. You can visit my eBay store by clicking here----> Second Chance Creations and Resale 

Thank You and God Bless!

Melissa <3

FINALLY!

On July 1st my transplant coordinator called to inform me that the medical board at Tampa General Hospital has FINALLY approved me for the kidney transplant list! It has been a long 14 months of doctors visits, medication changes, testing, treatments, a broken bone (it was my toe..lol), and lots of co-pays, mileage, and waiting room time accrued but all that accounts for is life experience as my time on the list of 99,754 others waiting for a kidney officially starts now.

Oddly enough the day before I was approved I had posted an update with a video I made discussing my struggle to stay positive during this process. I don't regret showing just exactly how stressful and lonely my situation can be. There are days when I just don't even have the energy to get up and accomplish basic chores, and then other days I wake up feeling like I could take on the world and that is typically when I over do it. It's because of this inconsistency that I get frustrated and depressed. Thankfully I at least have the listing part out of the way so that I can start accruing time while I continue to search for a living donor. As of now the expected wait time on the list for a type O kidney is 2-3 years here in Florida.

Also, being put on this list does not mean I am guaranteed to stay active on it. In order to remain active on the list I have to continually address medical issues that arise immediately, including my most recent discovery that I need two wisdom teeth removed. As most of you know, wisdom teeth can become impacted and cause abscesses or infections, something that I cannot allow to happen if I want to stay active on the list. So now I have to visit an orthodontic surgeon on the  5th to see just how much I am looking at to have them removed. One of my wisdom teeth which is actually numbered as the first tooth (go figure) has already started coming through my gum and it is decaying. Tooth #32 is still under the gum line, but it is impacted and causing frequent pain for me. With me undergoing the scrutiny of this wait list process it was mutually decided that both need to be removed prior to them causing any problems and/or infections that would result in me being placed as "inactive" on the wait list until the problem is addressed. Part of my struggle to get on the list recently was due to my white counts being high which typically indicates the body is producing more white blood cells to counteract an infection. The last thing I need now that I am on the list is to be put on hold or removed because of some stupid wisdom teeth that I should have gotten removed preemptively when I had dental coverage. As some of you know, Medicare does not cover dental so this is 100% out of pocket for me. My initial visit this Tuesday is expected to cost me at least $275 for the consultation and panoramic x-rays, and then the extractions themselves are another $250-600 each depending on what is required to remove them. I am taking $275 out of my kidney fund to pay for the consult and then requesting an increase on a couple of my credit cards to try and cover the extractions. I am up to my ears in debt and I am in the process of fighting to keep my Medicare and disability which is costing me almost $400 a month in fees for legal counsel that I really can't afford right now seeing as I need to replace my dying car so that I have transportation to all of my appointments and Tampa for the transplant when the time comes. Not having dependable transportation is also grounds for being removed from the list as well. :(

So with all that being said, I am trying to just take things day by day and do my very best to stay positive. My birthday is coming up on the 27th which is also the 20th anniversary of my first dialysis treatment and official diagnosis with kidney failure. I am focusing on making that truly a day to celebrate another year of life considering I was told on that day in 1996 that I was going to die. For a 17 year old to hear that from a doctor is terrifying! Even now most people take what their doctor tells them as the gospel because after all they are the ones who studied to become medical professionals and we have been bred to trust that they know what they are doing. I wish that I could tell the doctor who tried to plant that seed in my head to her face just how important it is to take an optimistic approach when giving a patient a diagnosis rather than bluntly stating their best guess based on outcomes they learned about in school. None the less no thanks to Dr. Voelpel, I am here 20 years later and still on this side of the grass. That is why I try not to take what the minor deities (MD's) say too seriously. The only one who can say when I am going to give up this human form is God and until that day everything I am told otherwise is merely an opinion.

Thank you everyone who has been following my journey and offering words of kindness, support, and love...it is all very much appreciated and it is also a huge part of why I am still here today. I couldn't have made it this far without all of you rallying behind me to boost my spirits and to lend a helping hand when I needed it most. I ask that you please continue to share my story and spread the word about the importance of organ donation. There are over 120,000 people on the list waiting for the gift of life and you can help all of them by bringing awareness to the need for more people to register as an organ donor, and educating yourself on living donation. We're all in this together!

Love & Blessings, 

Melissa
"If you give, you begin to live." - Dave Matthews

Don't Let Appearances Fool You

Just because dialysis centers are found in nearly every strip mall now does not mean that it is a simple, or pleasurable experience. The appearance of dialysis facilities on every corner should be more alarming than it is but when they are hidden among clothing stores and chain restaurants who would really think there are complicated and life-altering procedures taking place within those walls.

Right next to where you are shopping or enjoying your meal there are people fighting tooth and nail for their lives. There are loved ones who are dropped off and left for hours to sit alone hooked to a machine while their blood is removed, ran through a filter, and "cleaned" of both the good and the bad things that accumulate in our bodies when ones kidneys can no longer function properly.  

There is pain associated with treatment, lots of it and the last place you would want to be experiencing this is in a shopping plaza. There is exhaustion, dizziness, heart palpitations, chest pain, shortness of breath, cramping, vomiting, and much more. All things that you would are totally unaware of are happening all within the confines of what used to be a hair salon or a retail store; procedures you would expect to be taking place in a hospital setting, not a shopping center. Sure, as patients we grin ad bear it because after all, it is a means to keep us alive until we can hopefully get a transplant. Meanwhile, the growth of the dialysis "business" goes unnoticed. Why should attention be paid to these facilities erupting? Well, let me explain.

The growth in dialysis clinics should be alarming considering that according to the National Kidney Foundation 1 in 3 American adults are at risk for kidney disease and 26 million already have it and do not even know it! Kidney disease is the ultimate silent killer. Many people do not realize that they have kidney disease until they are already in stage 4 or 5 and are becoming symptomatic so they finally seek medical attention. Often times it is too late at this point and the damage to the kidneys is irreparable requiring the person to begin treatment. There are many causes of acute and chronic kidney disease such as diabetes, high blood pressure, drug abuse, strep and recurrent urinary tract infections, Lupus, Good Pastures Syndrome, blood clotting disorders, and various other medical conditions which can lead to kidney failure but what about the lesser known causes like the dyes used in imaging studies, and extensive ibuprofen or proton pump inhibitor use? How many people knew that prolonged use of over the counter medications like Advil and Motrin or Prilosec and Prevacid can cause kidney failure? Based on the amount of patients on dialysis now because of OTC medications, obviously not many are being educated on the risks of their use. 

 

And then unless you are one of the few who has family and friends lining up to be tested to donate a kidney to you, this is what you have to do in the meantime. If you chooses to do hemodialysis you will most likely visit one of the strip mall centers I have been referring to where you will be greeted by this, a long stretch of cold chairs and obnoxiously beeping machines. No privacy, no sense of comfort, but if you're lucky you might just get your own t.v. and some ice chips to kill the 3-4 hours you'll spend doing what your kidneys naturally do every 30 minutes.

You get hooked up right next to another person via the two large needles, or a chest catheter which goes directly into your heart and watch as your blood circles through the tubes into the filter and back into your body. Now, imagine a machine trying to clean out 2-3 days worth of toxins and fluid build-up in 3-4 hours when your kidneys would have naturally filtered your entire blood supply 6-8 times in that same time frame if they were working properly. Obviously the machine is pulling those substances out of your blood at a much higher rate than your body would which is why there are so many side effects and complications associated with the treatment.

This is why those of us who've experienced it fight so hard to delay beginning treatment again if it becomes necessary. After being given a taste of the freedom associated with having a functioning kidney, who would want to return to that? It's like asking a person to give up their place in heaven to take a seat in hell. For us, although we are grateful for the treatment which extends our lives, dialysis is hell. It is the hell that we must return to three days a week unless we want to slowly drown in our own body fluids and let our body painfully shut down organ by organ from toxin build up. Sorry for the graphic details but that is exactly what will happen if we choose to miss dialysis or stop treatment altogether. And then of course there is this...

As you can see, the number of patients on dialysis who die each year since the 1980's has not changed significantly. When compared to other chronic illnesses and conditions it is likely that you will find that kidney disease is among the few that the death statistics have not improved significantly despite the supposed advancements in treatment. 

Why is this you may ask? Because dialysis is a TREATMENT not a CURE. Not to mention dialysis is big business! Why just look at the costs of a dialysis patient versus a transplant patient and you will see that it is much more expensive for a patient to be treated with dialysis as opposed to receiving a transplant. On average, a hemodialysis patient incurs nearly $90,000 annually in treatment costs versus just under $30,000 to maintain a functioning kidney transplant. So why aren't more people getting transplanted? No worries, I have your answer...

That would be because of the shortage of organ donors silly! Why else?! As of 11:02 a.m. today there are 120,616 people waiting on the national waitlist for organs and 83% of them are waiting on kidneys. Kidneys are one of the few organs that can be donated while living and the donor will never even notice the difference! Why do you think we were given two? The other is a back up of course! This can be proven in patients like those who have had cancer or an injury resulting in a loss of function. The other kidney simply picks up the work of the missing or damaged one! Amazing isn't it?

This is why organ donation is so important! Doesn't everyone hope to leave a legacy in their passing? What greater blessing could you bestow upon the earth than to allow others to benefit from the gift of life when your time here is through? My donor chose to leave his gift which has given me nearly 11 wonderful years full of laughter, love, and even tears but I am incredibly grateful to have been able to experience every moment of pleasure and pain without depending on a machine and a super restrictive diet to survive. My donor has not only given me the gift of life, but he also helped to shape me into the person that I am today. Without him I would not have seen such beautiful sites, met such wonderful people, or experienced life as it was meant to be lived...not attached to a machine, and not curled up in an exhausted ball of emptiness after dialysis sucks what little life you had left in you out. I was on dialysis for 9 years but even if you ask someone who has been on it for 9 months, I'm sure they will agree with my statement. Register to be a hero, tell your family about your wishes, and encourage others to do the same. Your final gift to the world can be to selflessly give life and what better example could you possibly set for generations to come? Give love, give life, click here to register to be an organ donor today!

Just When I Think I Am Getting Somewhere...

Yet another setback!

My transplant coordinator called me yesterday to go over some things prior to my case going to the board for approval to be placed on the waitlist and I was informed that I have a parasite (Strongyloides) living in my body that must be treated before I will be approved to be on the active list. The hospital did this testing over a year ago but I was just told about this yesterday so this is only going to further delay the process. From what I was told the treatment process could take up to a few months because it requires more than one round of the medication with a break in between the treatments.

I'm feeling very discouraged. If this had been brought to my attention when the labs were drawn a year ago I could have already had this treatment done and been clear of the parasite, but instead I have been living with it in my system which may or may not be causing some of my current problems. This is proving to be a very difficult and frustrating experience the second time around and it is taking a toll on me emotionally, physically, and mentally. Not to mention I am still hoping to find a living donor but I have had no new leads there.

I started a Booster campaign to sell t-shirts with my website on them for other people to wear in the hopes of directing more traffic to my page and more people will get tested. If you would like to become a part of "Team Tuff" and wear one of these awesome shirts designed by me to help spread the word about my search in your area please click HERE

The shirts will only be available for a limited time (until June 12th I believe) and they will not print at all unless I have a minimum order of 9. I'm getting desperate here, so I am trying every avenue I can seeing as social media and having it on the back window of my car has not worked thus far. Next stop is a sign in my yard which will be coming soon no doubt because I am not ready to give up without a fight! Next update I hope to have something good to report since it seems the last couple have been downers. Until then....

Love & Blessings,
Mel

Women With Chronic Kidney Disease Face Unique Challenges...

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

DUH! 

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

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