Michelle Needs Your Help

February 26, 2021

*peeks around the corner* -crickets-

So, how about 2020 huh?

I'm doing well but, I'm in the process of rebirth & personal care/growth.

I'm struggling financially because I am now single. My donor & former partner left me Halloween Weekend 2020.

I'm setting up an office space where I can really pull my life together and find employment as an immunocompromised, unvaccinated 3 time kidney transplant pt.

My savings is evaporating before my eyes because I am alone w/ no help paying the bills. I know so many are in similar and worse situations.

More updates coming. I've put up a recent picture of me but, more will be coming. I really want to become more active in this blog and maybe other locations.

#MedicareForAll

April 13, 2020

Well, I've been terrible at keeping a journal evidently! I've never really been that good at it. Let's catch up!

On March 19th, 2020 I made it to my one year kidneyversary! One major hurdle down in the life of a kidney transplant. It's a big deal!

The past year has been an up and down roller coaster with health, finances and emotions. Right now I'm on day 40 of social distancing because of the Covid-19 pandemic. It's more like isolation because I can't risk anyone coming near me. Transplant patients are on some pretty harsh medications. The worst/best are the immunosuppressants. They keep my body from attacking the transplanted kidney but, they leave me at high risk of infection. Covid-19 is no joke and a real threat to those of us on these medications. I also have had asthma since I was a child. This just adds risk of infection. I know this virus will eventually slow and we'll have a vaccine but, for now, I just need to be patient and stay put.

The other issue with the Covid-19 virus, other than it's attacking the lungs of people, it's causing kidney failure! Like anyone like me needs THAT! So, please folks, do the social distancing faithfully. Even if you don't have any symptoms of this virus, you could be carrying it and can spread it. Wear a mask when you are out in public PLEASE! Wash your hands for 20 seconds minimum. Stay home if you can.

I can't end my Covid-19 comments here without thanking ALL of our essential workers. Every single one of you are heroes to ppl like me and millions of others! I wish I could give you all the PPE you need to stay safe. You're just AWESOME!

I had a couple of really bad upper respiratory 'colds' last year but, eventually they went away and I'm doing fine.

Update on the kidney! My doctors absolutely love this kidney! Casey is my lifesaving knight in shining armor. I know I've had two other heroes who gave to me in the past but, Casey is the man of the hour!

Doc calls it a 'Cadillac'. My kidney function has been so good that it matches a new born infant's function. Which, is the best it gets in your lifetime! Can you believe it?! I can and I'm feeling it! That's crazy though. kidney function as good as an infant. I just keep telling myself I have to hang onto this one for the rest of my life. It doesn't get any better!

This quarantine thing is frustrating because I'm feeling so good and want to be out and moving and living my life in the real world again. Your donations are going to help me get there and stay there.

There is so much I want to talk about. I'm doing this little update to just let you know I'm still here and still need support.

Three years post transplant, if I am off of disability, I lose my Medicare. This will effect my ability to afford my medications and other medical expenses. I need help passing along my fundraiser here. Please feel free to share to every social media platform you are on.

Thank you so much to all of my donors so far. You're the best! Altruism is saving lives. It's going to help save mine!

So much love to everyone. Stay safe, Stay well and please enjoy life!

March 18, 2019

It's tomorrow! I'm actually getting a kidney, tomorrow!

I'm speechless and excited and nervous and practically vibrating!

Thank you all who have donated and those who have shared.

I'm sure I'll post something tomorrow but, I'm not sure when.

Thank you Casey! I love you!

March 1, 2019

I got the call! Transplant date is March 19th, 2019!!!!

I can hardly believe it.

My partner of 11 years Casey, is my match!

On a whim last year, he started the process to see if he was a match. He figured since he was the same blood type, he'd try.

I'm beyond thankful for his selflessness.

Is a really great match as well as a really good kidney!

My life will get better but, the expense of transplant doesn't end at transplant.

I've spent my life fighting this disease and bankruptcy at the same time.

Anyone and everyone who has shared or donated to my fundraiser, you're all angels!

I'm beside myself with gratitude.

Until we have #MedicareForAll I continue to fundraise.

January 29, 2019

IT'S A MATCH!!!! 1/29/19

My donor, Casey, just got a call from the transplant program letting him know we're genetically a match! ✔️

December 14, 2018

This week I had my first cataract surgery. My right eye is healing well and I'm in awe at how bad it really was!

Colors are so vibrant now in my right eye compared to the foggy, muted and dull left eye.

Cataracts are common in CKD patients due to the steroids and immunosuppressive drugs we take. I'm not even 50 yet!

It's the holiday season! Lots of hopes and dreams on the minds of millions. I hope everyone gets what they wish for.

I got GREAT news about my donor! So far we're looking good. Initial blood and urine tests have come back with positive feedback!

This means so much! I'm in the cusp of getting my life back!

Thank you for visiting my page. If you've donated please know it means more to me than you'll ever understand. No matter how much it how little. Every penny is huge to me!

Great big hugs to everyone! Have a safe and happy holiday season. Stay warm and love the one you're with!

November 12, 2018

Well, I've been terrible at keeping up!

I've been approved for Medicare coverage based on my ESRD finally! Insurance panic is over and I'm still actively listed for transplant!

What a horrible feeling of panic that was. Due to no fault of my own to be threatened with being removed from a transplant list because my own government changed the rules mid game.

The weather is getting colder and the costs of keeping warm go up here in Maine. I love the seasons but, this one puts the pinch on the pocketbook!

I Might have a DONOR!!!!

We haven't gotten the go ahead yet but, waiting for initial blood work results! fingers crossed (and toes).

Cold morning today 11/12/18. they're talking about snow coming in for Friday. Brrr!

Please remember to share my page with everyone you know. Every penny helps.

The fact is, even with Medicare, my medical expenses don't stop. There are many things Medicare won't cover 100% and some things they won't cover at all.

My reality is that I may end up having to cover those costs which, over the lifetime of a kidney amount to tens of thousands. *My 1997 Transplant hospital bill was over $57,000. That was in 1997! My costs have never stopped since then. I really don't know how my parents did it with us three kids. They didn't, they had to declare bankruptcy twice and never recovered. I've not yet had to declare it but, without help I will.

Thank you again for your time and help. Please share.

July 30, 2018

Well, got bad news today. Due to the changes in Medicaid here in my state this year I'm losing my Mainecare (Medicaid).

I don't qualify for Medicare B until I either start dialysis or have a transplant before the end of August.

Without insurance, they deactivate my listing on the transplant list.

This means my next step is to find insurance I can afford on disability.

Thank all of you who have given already or just shared my fundraiser on social media.

I hate asking for help because I'm a bit proud of my ability to overcome. This is something I have no power over.

Thank you for your help and altruism. #hopeis #DonateLife

April 18, 2018

Come shake what your momma gave ya!

https://www.facebook.com/events/213915712708981/

My brother, Jonathan is host DJ'ing an event THIS FRIDAY 4/20/18 here in Portland, ME to help me with my first real live fundraising event!

I'm so excited! I've little energy to dance the way I used to but, I'll be there with my "Donate Life" T-Shirt and other goodies to hand out to some of those who show.

I'm really hoping for a good turnout! It's a great cause!

DANCE LIKE NOBODY'S WATCHING!!! *I will be! *Love you all!

February 24, 2018

I'm MOVING!

Have to move closer to my dialysis facility for when I begin treatments (unless I get a kidney first!).

I hate moving. Packing, unpacking, cleaning and then the expense!

I've already spent $150 in packing materials and I'm not even done yet. This after purging bags of clothes and boxes of family items which have been passed onto other members for safe keeping. Thanks Jon and Kendra!

Medication expenses have been high this month while I wait for my application for patient assistance to go through the pharmaceutical company's program. They wouldn't need a program if their prices weren't outrageous! $75 for 5 (five) days of one medication. It's only 20 tiny little pills but, I'm already $150 deep this week in refills waiting for approval.

So many reasons why Help Hope Live is important to me and my battle with CKD. I wish I knew of them my prior two transplants. I wouldn't have experienced such financial devastation like the last two times.

I hope everyone is well. I'm at the tail end of a yucky cold. head and chest congestion. Well, I'm off to bed. More packing tomorrow! G'night!

January 3, 2018

in 1980, I was 9 years old and I got a cold. It was Autumn and school was in full swing. By Spring of 1981 I wasn't getting any better and in fact showing signs of disease (puffiness, body aches, pains and vomiting after some meals). My pediatrician didn't know how to treat me anymore because antibiotics weren't working. They admitted me to my local medical center on April 1st, 1981. There was a severe blizzard that day, it was record breaking. Ironically, I was born in the same hospital in 1971 during a snowstorm.

Eventually, after a physician overheard the puzzled physicians working on my case they did a BUN blood test. This was after skepticism from my physicians because I was only 10 years old.

Bingo! there is was, all the signs of CKD (Chronic Kidney Failure) showing up in my bloodwork. I had gout at 10!

On November 6th,1984, my mom donated one of her kidneys to me after I spent a year on dialysis. There is so much more that happened between diagnosis to being transplanted but, I'm trying to keep this "short". Hard to do when you've been dealing with CKD for 36yrs.

High School was really rough. I had missed a lot of school from 6th to 8th grades. I didn't make those bonds in Jr. HS like everyone else. I was alone and lonely in a lot of ways but, I was an excellent student. My passion for learning, music & dancing is what got me through some of the worst times of my life in those 4 years. I hated HS socially but, loved the academics.

I learned in the mid 90's that transplants don't last forever. I was diagnosed with chronic failure of my graft and began emergency dialysis in December 1996. I spent another year on dialysis while both of my brothers were checked for donation because they were now old enough. My youngest brother stepped up and was a match so in August 1997, I received my 2nd kidney transplant that would last me 20 years!

So much has happened since then. Life has been a struggle financially and I've never really dug out from it since I took on my own care at 18 years old. I've almost always held a full-time job to pay my own way but, more importantly to cover myself with medical insurance. It's not easy and I've watched as the insurance industry, among others in the medical field, have reduced benefits and increased costs while denying coverage for potentially life-saving and, eventually, cost saving drugs and therapies.

I'm celebrating my birthday in January. I'll have lived 40 years longer than the doctors originally told my parents back in 1981. They thought I had a much more severe and incurable, untreatable disease before they found the kidney failure.