195
195
30

Transplant for Brandon Mouw

$25,189 of $250,000 goal

Raised by 195 people in 12 months
Created July 9, 2018
-- To understand the whole picture, please read the entire letter  :)
-- Ways to give are located at the bottom of the letter

From Brandon:


I am writing this letter to you out of pure humility because I have ran out of options, time is of the essence, and I require funds to cover a life saving surgery. Doctors have given me a limited time to live, less than 2.5 years, if I do not receive a pancreas transplant due to my severe hypoglycemia unawareness and brittle diabetes.

Health Insurance, Medicare (which I am not approved for), and Medicaid do not cover a PANCREAS ONLY transplant, even though it is considered medically necessary. As part of the Affordable Care Act, insurance companies were forced to adopt a minimum standard of care. A PANCREAS ONLY transplant was not considered a minimum standard of care at the time the Affordable Care Act was passed.  

In trying to get the transplant covered by insurance, I've gone through all the appeals processes, have had legal counsel, and worked with a lobbyist, however it is a procedure that is denied, and shall not be covered—even with all the help I received in getting the procedure covered. At the end of the day, I am currently not able to purchase ANY health insurance that covers anything related to a PANCREAS ONLY transplant. The insurance companies must cover kidney, kidney AND Pancreas, lung, heart, liver, liver AND pancreas, etcetera, but not PANCREAS ONLY transplants. 

During open enrollment for insurance, starting in November, I may be able to find an insurance plan that covers part of the PANCREAS ONLY transplant, but there is no guarantee of anything. 

The major issue is that my doctors do not think I can live/survive long enough, without further irreversible damage, to wait for the eight months to get possible insurance coverage and begin the transplant process. 

Therefore, I am left with the only option to fundraise the cost of the transplant surgery, aftercare costs, and medication costs because no insurance will cover what I require to live.  The amount of $250,000 is the Mayo Clinic Transplant Hospital’s estimate of cost for the transplantation surgery, aftercare, and medications. 

BACKGROUND AND HISTORY

Ever since I was diagnosed with Juvenile Type I Diabetes at age three, I have always been able to be a well controlled diabetic with no complications. Low and high blood sugars were a regular and ongoing thing, but they were correctable and manageable. Since January 2016, after my seventh surgery to remove scar tissue from my kidney and to reconnect it, I began having extreme low blood sugars. In December 2016, I was in kidney failure and septic again, and had a lesion growing off the kidney because it couldn't drain. Was taken into surgery and had my kidney removed, which was supposed to solve all my blood sugar issues. However, it only solved the kidney issue—not the blood sugar issues. 

I graduated law school in May 2017, and began working at a law firm in Phoenix. However, it quickly became evident that I was having issues remembering important things, being able to wake when my blood sugar was low, going unconscious and losing track/time at work, and not being able to perform the work I was hired to do. Therefore, in August 2017, I had to stop working, and began to focus on finding out what was going on with my health. 

NEW FINDINGS AND WHY I REQUIRE A TRANSPLANT

Since January 2017, I have continually had more and more low blood sugars. I do not recognize or feel the low blood sugars happening because they happen suddenly, without explanation, and without pattern. Each time my blood sugar goes below 70, my brain starts to shut down non-essential functions. So, I lose my ability to think clearly, logically, or normally. Moreover, the longer the blood sugar stays low, the brain shuts down other non-essential functions in order to reserve the energy for heart and lungs. Everyday, with no reason, my blood sugar goes 40 or below. The issue is that my body can only restart so many times before it can no longer recover.

After going to doctor after doctor, it has been determined that I have insulin anti-bodies, which hold onto insulin thinking that it is a danger to my body because it is a foreign substance, then, once the anti-bodies decide that the insulin is not a threat, they drop the insulin all at once instead of letting it work as it is supposed to over hours at a time; in turn, causing my instant low blood sugars. There is no treatment for the anti-bodies, but for a pancreas transplant. In addition, I have developed hypoglycemia unawareness, which means that I cannot feel or notice when my blood sugar is dropping because it happens so fast. Therefore, I am now considered a brittle diabetic, which means that I cannot control my blood sugars no matter the treatment. 

Since having the hypoglycemia unawareness, I have died and been resuscitated twice. The low blood sugars are not a joke. The diabetic doctor says that it is the riskiest disease to deal with because one low blood sugar will cause death, whereas high blood sugars take years to cause death. Unfortunately, I have low low low deadly blood sugars every single day. 

I live with the fear of going to bed each night and not waking up. Because I am at the mercy of what my body unexpectedly does, there is no consistency or trends or preventative treatment. Every low blood sugar is random, and hits me hard. To understand what an extreme low blood sugar feels like, imagine yourself at your absolute sickest, sweating, falling, passing out, not being able to think, walk, talk, while being dizzy, and in a state of absolute confusion. That is just a small taste of what a low blood sugar does. It sometimes lasts for six plus hours, and takes me hours to days to recover from a low blood sugar. I cannot drive, think, answer the phone, or do anything productive while hypoglycemic or recovering from an episode. All I am able to do is lay down and wait for my brain to start back up to function. 

Everyday, I eat, drink, and medicate the exact same way, however everyday has a different outcome. There is no consistency, which is the perfect example of hypoglycemia unawareness and brittle diabetes. At this point, I have gone through every type of treatment to help prevent the low blood sugars from happening, but all have been unsuccessful. Due to all the low blood sugars, I am have long term brain damage because parts of my brain that get shut down everyday cannot recover. In turn, the amount of gray matter in my brain is continually growing and will never be able to be reused. Furthermore, I am continually low in sodium because of the hypoglycemia and autoimmune issues, so my body doesn't break down essential elements, which means that at I am at extreme risk for seizures. In addition, my one good kidney is starting to leak protein, which is due to the stress of the low blood sugars on my kidney. All of this was not an issue before January 2016. It continues to be a downward spiral because my body is failing and cannot recover between each hypoglycemic episode. 

Right now, the only form of treatment—and my only hope of survival—is to get a pancreas transplant. The pancreas transplant will, if my body does not reject it, solve all the issues I have. My diabetic doctor said that I will not be able to survive longer than 2.5 years at the rate of my deterioration without a transplant. With a successful transplant, I will be cured from diabetes, hypoglycemia, and all the other issues that are causing my demise. Therefore, I must get a pancreas transplant as soon as possible for my survival. However, my insurance will not cover the procedure, and I do not have the funds to pay for the surgery. So, I require your generosity. 

TRANSPLANT OPTION

Here is where I am at with these issues; and, that is I must have a pancreas transplant to live. Went to another appointment with the diabetic doctor on May 16, and she said that I have to get the transplant by any means necessary because she does’t know how much more damage my body can take before it cannot recover, and by waiting until I can possibly switch insurances might be too late. Said to beg, borrow, or steal (jokingly, but being serious) to get the money; and, when I am fully recovered, I’ll be back to normal and fully functional, then can repay people’s generosity somehow someway. So, here are the facts:

Since insurance is not an option at this time and unreliable, I can only pay cash to receive that pancreas transplant in a timely manner. Phoenix, where I currently live, is where the Mayo Clinic Transplant Hospital is located.

All my doctors say it is the best place in the country to have the pancreas transplant. Mayo Clinic has a 91% success rate for pancreas only transplants. 

Because of an anonymous generous donation of $20,000, I have gone through all the pre-surgical tests and consultations, and am approved for a transplant. However, I need to provide the Mayo Clinic $250,000 to put me on the transplant list. 

The waitlist is short; there are currently only six people on it. As soon as I have the money transferred to the Mayo Clinic, then the pancreas can be available very quickly. 

CONCLUSION

I did not ask for this to happen to me, I did not do this to myself, I have always taken care of myself, I do not drink, smoke, or use drugs, this is just something that happens after 30 years of having a chronic disease; and, am extremely embarrassed that I do not have the money or insurance that covers this procedure and have to ask for help. 

Therefore, after going through all the options and knowing I cannot wait for a long time, I am asking for your financial generosity to get this transplant done as soon as possible—as my life is literally on the line.

The Mayo Clinic Transplant Hospital requires me to prove I can afford the surgery, medications, and aftercare; which is approximately $250,000. With the Mayo Clinic financial department’s recommendation, I have set up a special needs trust that all donated funds will go into. All funds will go directly to the Mayo Clinic, medical bills, medical related costs, medications, etc., which is what a special needs trust is used for. The special need is uncovered medical costs. A trustee has control of the funds to pay the medical bills, and the Mayo Clinic accepts this payment arrangement. 

HOW TO GIVE

There are TWO WAYS to DONATE:

1) THIS GO FUND ME PAGE.  

AND/OR

2) Check written to the special needs trust:

If you would like to provide a check, then it must be written and sent per the following:

Written Out To:
B.M. Special Needs Trust

Mailed To: 
Brett Mouw, Trustee
8443 Ranger Ln.
Chino, CA 91708

ANY amount will help. Thank you for your consideration, thoughts, and prayers in helping to save my life. Sharing my story will also greatly help. 




All the best,




Brandon Mouw
+ Read More
From Brandon:

Had my first appointment at the new transplant hospital in California on Friday. Cedars-Sinai had all my records and everything went smoothly.

My bloodwork shows that everything is working well, and based on the levels and anti-rejection medication they changed the dosing amounts. Which happens almost every appointment.

However, we discussed the issue of having two biopsies that showed mild rejection. Because they were treated with steroids, the doctor believes that if they did another biopsy that it would show mild rejection again. The only way to see early, or mild rejection, is through biopsy because the pancreas is working, so the levels will always return good until the rejection gets deep into the organ—which we are trying to prevent.

So, they want to do another biopsy in a month and see what the results show. If it shows mild rejection, then they will go the nuclear option (this can only be done a few times, and they did it the first time the night I had the transplant) and infuse me with a medication that completely destroys my immune system for a minim of six weeks. Which, will make my body unable to fight against the organ, the pancreas can heal from attack and inflammation, and be accepted by the body completely...which is the hope.

So, I have weekly lab work until my appointment in a month to let me know if the doctors want to down that path. The goal is to protect the organ, so it will last for a long time. Weighing the risks and benefits are what is being considered. For now, I just keep trying to stay healthy, focus on letting my body heal, stay away from stress, and play the waiting game.

All is well, I feel great and am alive; this is just the update on what I found out on Friday. It’s all baby steps for the first year.
+ Read More
Brandon is still in Arizona and going to 1-2 appointments a week at Mayo. He had a biopsy done on Wednesday to see how the new pancreas is doing. Unfortunately, Brandon found out today that the biopsy showed signs of inflammation. Inflammation means that white blood cells are collecting, and the body is trying to protect the body. Which means that Brandon’s body is in mild rejection of the pancreas—again.

This is most likely because he and the doctors have been trying to get him on the lowest doses of medications and stable, so he can transfer care and move back to California. However, because there is mild rejection, Brandon has to do three infusions of steroids, then take high doses of prednisone that gets tapered down over 10 days to fight the inflammation.

In order to fight further rejection, the doctors started Brandon on stronger medication. The stronger medication and steroids should put him back on track, but he has to stay in Arizona for at least another month to be watched closely by Mayo.

The good news is that this was caught early. Over the next few weeks, the doctors will know if the treatment is working. Once everything settles, and there is no sign of rejection, then the Mayo doctors will allow Brandon to move back to California.

Brandon wanted to update everyone on the new information just in case anyone was wondering what was going on.

Even though this doesn’t sound like good, Brandon feels great and is in good spirits. As the doctors have always told him, it is at least a year of healing and everything is done in baby steps. It’s only been 4 months since the surgery.

Thank you for your continued prayers and support. Brandon would not be alive if it wasn’t for the transplant team, organ donor, and, most importantly, all of you who prayed and helped raise the funds to make it all happen. I will update you if there are any major changes. Thank you, again.
+ Read More
Brandon has been going to 3-7 weekly appointments at the Mayo Clinic since being released from the hospital on December 31st. This is common practice for a pancreas transplant because they want to make sure that the surgery was successful.

Things have been going well, but Brandon hit a hiccup last week when a biopsy showed mild rejection of the organ. The doctor’s said this is common, and the treatment was immediate daily infusions of steroids for five days followed by oral steroids for a month as they are slowly tapered down to low dose a day. As of today, the steroid treatment stopped further signs of rejection, which is great news. They also started Brandon on stronger anti-rejection meds.

Tracie was allowed to finally go home after six weeks of being Brandon’s caretaker. She went home on Wednesday. Brandon is able to drive and care for his basic needs, so he doesn’t need a full-time caretaker. If something comes up, then Tracie will go back to Arizona to be his caretaker again.

As of now, the doctor’s feel like Brandon is stable enough to stay on his medical regimen, care for himself, and keep stress free to allow his body to adjust and heal properly. They say it was a major, major surgery, and that he just has to take baby steps for the first six months to a year to get completely better.

He will soon be released from Mayo of the many weekly appointments with just a weekly blood test and once a month appointment to make sure everything is working as it should.

Thank you for being there for Brandon (and his family) with your thoughts, prayers, and support. There are still a lot of unknowns, but they will be handled as they arise. This transplant has been the greatest blessing for Brandon. Without all of you, Brandon would not be alive, nor have been able to receive this life saving surgery; and, Brandon is grateful beyond words can express.
+ Read More
Brandon wishes you a Happy New Year!! Here are all the medications Brandon needs to take daily to prevent rejection. And since his immune system is so repressed he needs to take meds to fight off infection. He needs to wear a face mask to help prevent any illness. He is on a strict daily 6 week recovery program that includes follow up appointments, blood draws, urine samples, consultations, biopsies, and testing to make sure pancreas is working sufficiently.
+ Read More
Read a Previous Update

$25,189 of $250,000 goal

Raised by 195 people in 12 months
Created July 9, 2018
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
$30
Anonymous
6 months ago
JS
$100
Joshua Sarkin
6 months ago
CR
$300
Cody Reitsma
6 months ago
$100
Anonymous
6 months ago
$100
Glenda Celigoy
6 months ago
CH
$100
Cheri Honderd
6 months ago
JL
$200
Julie Locke
6 months ago
AS
$20
Albert Sweigart
6 months ago
NP
$20
nicole perez
6 months ago
$50
Anonymous
6 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.