Joe needs a new Pancreas

For: Joe Doetsch
Organizer: Angela Doetsch
$7,388
of $15,000 goal.
Raised by 95 donors
49% Complete
This fundraiser is closed. Thank you for your support!

The Story

My 29 year old brother Joseph has been a Type 1 insulin dependent diabetic since he was 15 years old. He has spent many years struggling with this disease. Over the past year, the disease has taken a turn for the worse. After years of specialists, insulin pumps, and insulin therapy, his Endrocinologist has exhausted all treatments and therapy and has determined that my brother is suffering from Hypoglycemic unawareness, the inability for his body to respond to low blood sugar which results in dangerous life threatening low blood sugar resulting in a deficient pancreas and has determined through C-Peptide Tests that his Pancreas has stopped working to the point of needing a Transplant.

This diagnosis in conjunction with years of non-compliance to insulin therapy & treatments leaves only one viable option for survival, a Pancreatic organ Transplant.

In order to be approved for the transplant surgery, weekly visits to Houston are mandatory for testing, education classes, and meetings with Transplant teams at the Hospital. 3 Caregivers are required for pre & post-transplant needs for my brother. I am one. Once approved for the transplant, relocation to Houston is mandatory for him & his caregivers for a minimum of 4-6 weeks but could be longer depending on my brother’s recovery time & new organ cooperation.

What fundraising would assist with:

  • Travel to Houston for appointments and evaluations (Gas, Food, Lodging, Hospital Parking, Pre-Surgery Medication & treatments, Specialist costs not covered by insurance)
  • Surgery itself is around 130k. Insurance will pay majority of surgery costs minus the following:
    • $10,000 maximum out of pocket expenses
    • $1,200 insurance deductible
  • Post-Surgery Medications up to $500-$700 per month for the first year, then around $200-$300 for the rest of Joe's life for Anti-Rejection Medications.
  • Other Misc Medical Bills for treatment and Surgery including regular follow-up appointments with the surgical center in Houston for the rest of my brother's life.
  • 4-6 Weeks relocation costs to Houston post Transplant. (Lodging, Food, Gas, Medications, Specialist costs not covered by insurance)
  • Bills at Home post-transplant during recovery. (Utilities, Food, Mortgage, Car Bills etc.) 

What is my Brother’s life like now?

  • Has been diagnosed with a Severe End Stage case of Type 1 Diabetes that includes:
    • Pancreas is at a 0.2 percentage of functionality
    • Hypoglycemic unawareness - inability for the body to respond to low blood sugar which results in dangerous life threatening low blood sugar.
    • Severe Hypoglycemia (Low Blood Sugar) Which frequently causes Black Outs, Seizures, Memory Loss and can cause Comas and Brain Damage.
  • Has frequent Diabetic Seizures
    • His License has been revoked due to multiple car wrecks involving diabetic seizures
  • Has Diabetic Neuropathy (Nerve Damage in the legs and feet)
  • Is Unable to work
  • Has Lost 5 jobs from diabetic low blood sugars and seizing while working as this is a liability for employers
  • My brother is an amazing photographer which he has a great passion for that he is unable to do any more due to his physical condition
  • Has a Wife and 2 young children (8 year old son & 1 year old daughter)
  • Joe's Wife Nikki is currently the sole provider of income for the household with minimal contributions from immediate family members who help when they can
  • My mother currently lives at their house during the week to help take care of my niece and my brother since his seizures are so frequent
  • Family/Neighbors have placed over 60 emergency 911 calls for help since  5/1/2012
  • Cannot walk around the block with kids without passing out/collapsing due to low blood sugars
  • Diabetic Endocrinologist has exhausted all treatment options and a pancreatic transplant is the last hope for survival

What will my Brother’s life be like after a pancreas transplant

  • Pancreatic Transplant has the potential to 100% cure his diabetes
  • Blood sugars will stabilize
  • No more fear of seizures, passing out, collapsing or injury from diabetic episodes
  • No longer needing to take insulin injections
  • Being able to return to work
  • Extending his life expectancy & Quality of Life
  • The elimination of the constant fear of death

And most importantly!!

  • Being able to play with his kids

Fundraiser Updates

Posted on October 23, 2013

Posted on October 23, 2013

10/16/2013 - 10/21/2013:

The Good News- Dr. Sadhu whom is a world Renowned Endocrinologist who specializes in rare disorders may have finally Diagnosed me with something!! After seeing so many doctors and so many specialists that were shocked at my condition and had no answers I may finally have the answer we have been looking for. (More Below)

The Bad News- This new diagnosis may put the Pancreas Transplant at risk. (More Below)

Day 1 - I was Admitted into the Hospital onto the Dunn Tower Level 4 Transplant Unit. I met a few of the Transplant Nurse Team and was told a little about what Dr. Sadhu ordered for the First Night which included hooking me up to an Artificial Pancreas which would mimic what the Transplant was thought to do for me minus the Human Insulin Aspect. Dr. Sadhu arrived a short time later to hook up the machine. It's kinda like an insulin pump but can mimic the Pancreas in the small amounts of Insulin it can pump into the IV and the short interval of times it can do it mere seconds. It required the nurses to come in every 50 minutes, check my blood and adjust the settings. Very high tech. Through the night I still awoke with high blood sugar like I always do. 

Day 2 - In the morning they picked me up for some standard labs after the test the previous night and then shipped me to MRI for a look at my Pancreas. The Dr. Came to my room and told me to switch my correction factor of Insulin to 1:80 which means in theory for every 1 unit of Insulin it will drop my Blood Sugar 80 Points and that my target Blood Sugar will be 150 and to only correct if my Blood Sugar hits 300. Then she put me on a 1:40 Ratio for Food which means 1 unit of Insulin should cover every 40 grams of Carbohydrates I ingest. Being Diabetic is fun, Huh? Lol. 

Day 3 - After noticing my sugars were still fluctuating dramatically, just high instead of low the doc ordered some odd labs to rule odd some rare disorders and diseases and put a rush on them after she had a chance to see me for herself over a 48 HR period. Dr. Sadhu returned later in the day and said and I Quote "Joe, You have opened Pandora's Box." She then started to explain one of the tests she ran was for Insulin Antibodies. The normal range for the test is between 0-0.4 My result came back 35.8 which means I have a large amount of Antibodies to Insulin in my system which is a new Auto-Immune Disorder on top of Type 1 Diabetes. It is pretty rare and hard to treat. The Antibodies cause problems requiring large amounts of insulin to bring down High Blood Sugars and causes Delayed Hypoglycemia which can be many, Many hours after taking an injection where the insulin is supposed to be gone but in fact it is still in my system since it did not bond to my cells properly and in fact was just sitting in my system not being used. When the cells finally do pick it up much later my sugars can be normal and then I get this boost of insulin that I don't need that in turn causes the crazy dangerous life threating low blood sugars. 

Day 4 - Dr. Sadhu came in and explained some of the treatments which are dangerous as she said this is a rare disease and even rarer in Type 1 Diabetics. We have to wait for confirmation from a specialty lab in Europe to see which cells and which receptors are under attack and under attack by which cells in my immune system. The treatments usually involve High doses of Imunno Suppressants for the rest of my life and Corticosteroids for the rest of my life. During the time in the hospital I continued to go up in blood glucose readings as high as 580 and as low as 24. Dr. Sadhu decided to add regular insulin to my routine hoping the antibodies wouldn't be as high. She prescribed 4u at 12:00am. 

Day 5 - Woke up with really high Sugars again. Dr. Sadhu came in and added a medicine as off label use called Acarbose which is never prescribed to Type 1 Diabetics, It's given to Type 2. The point of this medicine is to stop the food you eat from breaking down into glucose which in turn lowers the amount of insulin you need to take and prevents high blood sugar. The first day it didn't work. 

Day 6 - Dr. Sadhu changed my dosing for like the 4th time while in the hospital. In the middle of the night I got really low requiring the second IV push of D50 since being admitted. By lunch time Dr. Sadhu realized there was no way she was going to be able to stabilize be and began the discharge preparations with Home orders. I was discharged Ambulatory with Blood Sugar at 350 at 5pm. 

Discharge Orders:

1:40 Ratio for food only if sugars are above 200. If below, wait an Hour recheck and then give a Bolus. 

Take 25MG of Acarbose before every meal as long as my sugars are above 80. If below it can cause dangerousness hypoglycemia and anything I eat won't be absorbed because of the pill and i will need emergency treatments of Glucagon injection or D10 IV

1:80 Correction Factor - Correct to 150 only correct when sugars are above 300. 

Log of everything for a week and call Dr. Sadhu with results and we will go from there. 

I will ill return to Houston in 2 weeks for the important blood draw for Europe to confirm Disease and Treatment options. 

Posted on October 2, 2013

Posted on October 2, 2013

10/02/2013:

Went to Houston Methodist Smith Tower 5 to have my labs drawn. I got a total of 30 vials pulled today just after 7:00am. A new Fiscal Year started yesterday on the Insurance so a new Deductible and Yearly Maxes will have to be paid. It is a little frustrating that these labs were ordered now and not a few weeks ago due to the fact that the Financial Guy told me that this lab draw will cost around $10,000 due to the rare tests being ran and being shipped over seas. I will have to pay $600 deductible upfront and then 20% after that. I guess I will see what the insurance pays once I receive the bill in a few weeks. 

I have a follow up appointment with the Endocrinologist Dr. Sadhu in 3 Weeks and she will be ordering more expensive tests then from what she has told me including an Adrenal Test Biopsy Scan, A Pancreatic CT, A Pancreatic MRI and possibly a Thyroid Ultrasound. I will let everyone know when those are upcoming. 

For now I am just going to try and stay positive, put my faith upstairs and take each day as it comes and wait for the results of these crazy rare labs. 

Thanks everyone for your continuing love & support and any donations (Even $1.00) will really help out during this new round of testing over the next month or two. 

- Joe

Posted on October 2, 2013

Posted on October 2, 2013

10/01/2013:

Dani and I went to Houston Methodist today for our first appointment after I have been placed on the waiting list for Pancreatic Transplant.

First, We saw Dr. Knight (Head of Transplant Surgery). He wanted to go over his findings thus far with me and tell me of his progress on his end and explain the surgery in a little more detail while getting a little more background medical information from myself. He was happy that I have lost close to 20 pounds since May but feels that the Pancreas Graft can cause complications with my current BMI including Clotting and Death. He wants to speak with Dr. Gaber (Head of Pancreas Transplantation) to come up with a good weight for me to be at since they know I have been gaining weight lately due to the severe low blood sugar episodes I have been having. Other than my weight loss goals, everything is on track for transplantation and moving smoothly from the Surgeons perspective.

Next, We saw Anju (Transplantation Dietitian). Anju was awesome! She was fun to be around and understood exactly what I have been going through. She knew that I have been struggling with having to eat poorly in order to keep my blood sugars somewhat stable. She wants to try a long shot to see if it helps. Anju is putting me on a short term super high protein diet hoping to stabilize my sugars somewhat to encourage my weight loss. If it doesn't work we will be trying something else. I will be eating things like eggs and plain oatmeal in the morning, hummus and cheese for snacks, whey smoothies & lots of meat for dinner. If I get low I will try peanut butter with bread or crackers. Soda and candy are still in play for severe lows. We are going to try this for a week and let Anju know how this goes while we log all food and insulin intake.

Last, We saw Dr. Sadhu (Transplant Endocrinologist). This Endocrinologist is by far one of the most intelligent I have ever met. After getting my background and reading through the notes she agreed that transplantation is the way to go but offered some insight as to what may be causing my problems. This is quite a change as I am still not diagnosed with anything that could make my Diabetes worse and she feels I may be a candidate for 2 possible rare conditions. One is a adrenal gland problem and the other is a autoimmune disease that either creates a sensitivity or blockage of the insulin receptors which is more in line to what I have been going through. Due to this she wants to have me run tests in the morning so I am staying in Houston another night so I can have special lab work drawn in the morning.

The lab tests are extremely rare and only a few labs in the world test for it so my blood will be traveling to the UK to undergo the test and it takes over a month to get the results back. I have to be fasting for the labs so that is why I have to go back tomorrow morning.

These tests are very important due to the fact that if I have the autoimmune disease with the sensitivity receptor issue then a transplant won't cure me and the surgery will put me in a worse situation then I am in now. If the test comes back negative than we just continue not knowing what's wrong with me and continue with the surgery.

I will post another update in the morning after I have the lab work done.

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