August 7, 2020

Now pneumonia has settled into my right lung and part of my left. I have a very high platelet count, my white blood cells keep going up and hemoglobin keeps going down. Now we are waiting for the results from Infectious Disease and Oncology to weigh in with their results.

Per the doctor…You are too sick to be home but not sick enough to be admitted.

Looks like we have to wait for my health to take another turn for the worst before more invasive procedures can be taken.

Time to wait and hope they find out what is going on.

One problem is that I have no immune system to help my body fight.

Thank you for keeping me in your thoughts along with my husband Rich.

Sincerely,

Jason

August 7, 2020

So the latest is I have 2 bacterial and 1 viral infection(s) in my gastrointestinal system. My immune system is gone and I am not able to fight these infections. They have had to greatly reduce my anti-rejection meds in an attempt to help my body fight without harming the transplanted organs.

After we get the infections under control then we will be able to focus and address other issues that are occurring.

Further updates will be posted.

July 7, 2020

It’s time for me to give a slight update on my current health situation. Today is not a good day emotionally but I will be fine, so just let me vent.

As you may or may not know, having an organ transplant can take a toll on your entire life…I have had 4.

I’ve had 2 operations on my left arm this year to try to give me the full use of my left hand as well as some feeling. However, after speaking to the surgeon this morning both operations have failed. She has truly done her best but, now must turn the issue back over to my Neurology team for them to see what if anything can be done.

My right shoulder must be replaced but it is an operation another surgeon does not want to do at my age. It’s not looking good to me that I will make it to the acceptable age for him. So now to me it becomes a case of giving me the best life possible. Can I at least have the full use of 1 arm?

I have had nothing but ongoing issues with my gastric system. I have been on both feeding tubes and central lines to help me get the nutrients needed. My team appears lost as to how to proceed further. So this weights heavily on my body and mind daily.

I was invited and hoping to ride the Donate Life RoseBowl float on January 1st 2021 (as of now it is still going forward). However, as of today none of the companies asked to sponsor me ($10,000) have confirmed or agreed to move forward. So this has me seeing this as a dream that will go unfulfilled.

Those who are chronically and critically ill will understand the toll your body and mind get hit with 24/7.

Thanks for letting me vent and get some of my challenges off my chest.

Take care of yourselves and each other!!

May 6, 2020

Stay Home and Stay Safe!!

Hello Everyone…I hope the above applies to you and your family (if at all possible).

I was and still do follow the instructions by the Illinois government. However, I did just yesterday get released from 12 days in the hospital. I unfortunately had another blood infection containing 3 different bacterias. This required the removal of yet another central line and am know eating via a NJ tube

On, a positive note…I for the first time in over a year, eating solid food!!! If this works I may be able to eat some food while eventually getting a new GJ tube!

Wish me luck!!

I wish nothing but good health and valuable time together with family and friends if and when possible!

Stay home and Stay safe.

Jason Enyeart

April 24, 2020

Good Afternoon-

We are now in the world. So many lives has been changed forever.

With all the focus on the Covid-19 virus. The news has forgotten that their are people/patients who need help. Transplant patients are still waiting and dying while organs are not available.

Chronically Ill patients are in danger of getting worse or dying because the equipment and procedures needed to help us stay alive.

So much need and so little help and supplies.

I am in the hospital again. My nursing staff is great and does not appear to be overwhelming or stressed. This is great to see.

However, supplies are low and the house keeping (EVS) is either short staffed or unable to full clean a room in the time they must be giving.

My doctors are calling to see how I am doing. But how do you explain something you have never had to someone on the phone?

To me. It feels as if the hospitals want to ensure they have the least amount of deaths by the Covid-19 virus but making us the #forgottenpatients

Stay well and stay safe!!

Sincerely,

Jason Enyeart

March 26, 2020

Well, I just got out of the hospital following a Covid-19 scare. I did test negative but it was a little too close for comfort. PLEASE follow the guidelines and stay inside if ar all possible!!

Stat safe!!

Jason

March 1, 2020

It’s been a week since I was admitted back into the hospital for a possible infection. Ended up being 2 different forms of bacteria that decided to cause a very dangerous blood infection. So after fighting for a week. I have finally received my new Hickman central line so I can again start TPN feedings, as well as a picc line for administering antibiotics at home every 8 hours for the next 10 days.

So, it looks like tomorrow morning at 10 AM I will finally be able to return home!!

#provethemwrong

March 1, 2020

Today, February 16th 2020, I am alive because a 22 year old female lost her life 1 year ago. Either she was an organ donor or her family made the decision on her behalf. I have also not been able to locate my donors family or perhaps they would prefer to remain anonymous.

I thank them for the gift of hope via a pancreas transplant on February 16th 2019, in Chicago at the of University of Chicago. I am sorry for their lost, however thank them for saving my life and that of others because of the organ donation decision that was made.

While this is my 4th organ transplant these types of messages are difficult to write. I however believe it is important to care for the gift I was given as well as thank my Hero and her family for continued life.

Thank you.

March 1, 2020

My doctor’s called yesterday, wanting me to go to the ER for bloodwork to see if anything showed up infection wise. I was in the ER from around 6 PM to just after 5 AM.

Woke up to a call from an ER doctor saying, that my cultures are already positive and I must return to the ER ASAP. So I am being admitted, now with a very dangerous blood infection.

This is my 4th admission to the hospital this year…UGH!!!

Stay strong!!

Jason Enyeart

#provethemwrong

February 7, 2020

Good Evening,

I was readmitted to the hospital on Sunday, February, 2nd due to ongoing issues with my feeding tube. A central line was placed into my chest which will now alkow me to receive nutrition via TPN. I was released today and my nurse and supplies arrive tomorrow.

Keep pushing forward!!

#provethemwrong

Jason

January 31, 2020

Well, ww are almost to February and I have already had my feeding tube changed twice and surgery on my left arm.

I am happy to report that the operation on my left arm appears to be a huge success!! For the first time in almost 2 years I can make a fist and open my hand back up. I can also feel my fingers again! It is truly amazing!!

The feeding tube however, remains an issue…I have not ate solid food since April of 2019 and the feeding tube has leaked since it was placed. They will be doing additional testing to see what the next steps may be. Please keep me in your thoughts as I am not sure where this is heading.

Sincerely,

Jason

#provethemwrong

January 5, 2020

Happy New Year Everyone!!

Thanks. To your generosity and kindness I made it to 2020!!

It’s hard to believe and very emotionally challenging. So much is going on in the month of January. Surgery on Monday, January 6th to see if function and feeling can be restored to my arm and hand. Surgery on Monday, January 20th to take out my current feeding tube and replace it with a different type.

In between, a biopsy of the tumor in my neck lymphoid, injection in my right shoulder to hopefully avoid surgery, and a 2nd Ketamine infusion.

However, my goal has always been to #PROVETHEMWRONG so that will continue to be my goal.

I will keep pushing forward until my body and/or mind say “that’s it”.

I will then take my Walk of Honor like those before me and donate whatever is left in/on my body to help as many as possible.

My other goal is to make it to ride the 2021 Donate Life Rose Bowl Parade Float.

I wish nothing but a great and happy 2020 to all of you.

With Love,

Jason Enyeart

December 10, 2019

Happy Holidays Everyone,

I wish you and all in your lives nothing but the best possible!!

My transplanted organs continue to do well which is great news.
I’m in O.T. to see what can be done to help with the nerve damage to my left arm and hand. I see another Orthopedic Surgeon on November 12th to see if my right shoulder needs surgery.

Either way, I am up for the challenge and will continue to live the best life possible!!

Happy Holidays!!

Jason Enyeart

November 30, 2019

The liver and pancreas continue to do well.

I am now struggling with unexpected challenges, I was not prepared to deal with.

The nerve damage to my left arm and hand may be permanent. A new group of surgeons is seeing what can be done to surgically correct this damage.

My right shoulder has experienced damage that may require a shoulder operation/replacement.

I am unable to get enough sleep no matter how much time I spend sleeping.

I also continue to be on a feeding tube 24/7. It is looking more and more possible that this is permanent

No matter what. I continue to find some joy each day and I continue to volunteer to help others with being critically ill patients.

I am hoping to gain donations to assist in the coverage of medical expenses not covered by insurance.

Anything you can do to help is greatly appreciated!!

Sincerely,

Jason Enyeart

November 2, 2019

So my journey to find out the results of the recent MRI’S began today. As many of you know since my liver transplant, my left arm has been numb and weakening.

The first specialist, advised today with disappointment that the main nerve is damaged and therefore, may be impossible to fix. He advised that one option remains but it would require a trip to see a specialist at the Mayo Hospital.

This decision is currently on the table but on hold until I see the next specialist on the 18th of November. They may be able to provide a possible resolution via a tendon transplant

I will keep you posted but this was a blow to my system as I was hoping for positive results.

However, I will not give up I will just ask for help and support from my friends.

Sincerely,

Jason Enyeart

September 28, 2019

Hello Everyone,

Well it’s been an interesting ride as of my last update.

A mass was found near my esophagus and a tumor in a lymph node in my neck.

Surgery was done on the mass last Thursday morning. With luck the doctors said is nothing to worry about as it is nothing.

A biopsy was performed on the tumor today. Six samples of tissue and fluid were taken. The pathologists now have the samples and advised the results will be back early next week.

Now we wait…

Thank you for your help and support.

Jason Enyeart

September 2, 2019

Jason has been unable to eat so a G-Tube has been placed in his left side. This allows him to tube feed until he can (hopefully) once again eat food.

Medicine changes continue to occur.

Jason will undergo surgery on his throat September 19th so that biopsies can be taken. More will be updated after the results are back from that testing.

In the meantime, Jason has been trying to get out and enjoy Chicago as much as possible with the help of his husband and friends from Indianapolis. Hopefully, friends will be made locally in the near future.

July 30, 2019

Jason was able to spend the 28th of July at home enjoying his 42nd birthday with his husband Rich after spending another week in the hospital.

Jason has now gone a little over 40 days without eating but the newly installed feeding tube seems to be working.

July 12, 2019

Hello friends…well, Rich and I made the move to Chicago. This way we are closer to our medical teams when assistance is needed.

Needed is is an unstatemet this time. It’s been 23 days since I last ate food. We finally all agreed a feeding tube will be inserted to provide nutrients. Side effects from the transplants continue to arise but my liver and pancreas remain strong.

We do however, need assistance with new and existing medical expenses that insurance won’t cover for a variety of reasons. Anything you can donate would be greatly appreciated.

June 12, 2019

After much thought and discussion, the decision has been made between my husband Rich and I that after 4 transplants. It is time to relocate to Chicago. This does not ease the financial burden placed on us by the refusal of the insurance companies to pay for what I consider the basic and life saving needs. However, this move will allow me to be closer to my doctor’s by several hours.

Just when the sun decides to shine a big cloud shows up but, one day the clouds will get smaller.

I continue to thank each and every one of you who takes a moment to make a donation.

Sincerely,

Jason Enyeart

May 19, 2019

Life continues to have it’s ups and it’s downs. Still recovering in Chicago, and it looks like I might still be here for a little while longer.

My body decided that dealing with both transplants and the Norovirus and Thrush wasn’t enough. But in Sunday the 12th of May I had to go to the ER by ambulance and then spend some time in the ICU. Not only had I drank too much water and dangerously lowered my sodium levels causing swelling in my brain but I had also caught Para Influenza.

Luckily. I am back at the apartment in Chicago to continue recovering. Hopefully one day family or friends will be able to visit.

In the meantime we continue to hope to see the available funds grow so that items not covered by insurance and/or caused by my extended stay can be covered.

Thank you for your continued support and prayers.

Sincerely,

Jason Enyeart

April 29, 2019

Good Evening Everyone,

I hope you all are doing well. The norovirus is still kicking my ass along with thrush. We are now trying to identify the potential infection responsible for raising my white blood count to over 17. So my stay in Chicago has been extended until at least May 22nd. I have also been removed from nearly all my immunosuppressants, to assist my body in fighting the viruses that keep attacking my body.

All of this is taking a huge hit on my body and mind. Rich’s body and mind. So please keep us in your minds.

Sincerely,

Jason Enyeart

April 13, 2019

The norovirus got the upper hand and I ended up in the hospital for a few days. My immunosuppressants had to be lowered to almost nothing in order to allow my body to fight. I have also developed thrush. The combination of meds has had one unpleasant side effect…for the moment I cannot taste. My stay in Chicago has been extended for another month I have no idea how I am going to pay for it. But we have made it this far…can’t give up now, Right!

As I always say…Prove them wrong.

Thank you,

Jason Enyeart

April 7, 2019

One day, Jason will post a positive message. He has been sleeping and trying his best to stay out of the hospital, as his body somehow contracted the the Norovirus. His transplant team is doing everything as well but this is a tough thing for his system to fight.

Jason continues to be extremely grateful for the guests, The Liter House, and the artists that showed up to put on an make the art show so successful. Help Hope Live continues to be amazing to work with as we struggle to maintain a place to stay in Chicago and our home in Indianapolis. Without continued assistance from them and the community or another source we have not found. We may be losing both. We will keep you posted. We appreciate all of you so much but we must continue Jason to stay strong and fight regardless of what else is happening around him.

Thank you everyone.

March 16, 2019

4 week post transplant update…

The pancreas is working well and is keeping my blood sugar levels down and stable at around 75!!! However, as my doctors put it “she is a bitch” so while we celebrate we don’t let our guard down. This organ is extremely important to my survival and we must do everything possible to ensure that she survives.

The liver is still working great so we just need to keep taking the medications and keeping an eye on it.

My stay in Chicago has been extended by another 4 weeks due to what may be some unexpected damage or injury to the bladder and prostate. I undergo additional testing next week to see if it can be repaired and how.

The side effects of the medications are making their presence known. There is nothing to do but deal with them, so I apologize now. I am trying my best.
I greatly appreciate those who continue to take this journey with me as I have a long way to go and it’s not an easy path. Help is still needed but help comes in many forms. Emotional support, financial support, sharing my posts with others, offering words of advice and kindness, etc..

I again thank you all.

Jason Enyeart

March 5, 2019

On Friday, we went for what was to be a follow-up appointment. However, bloodwork showed I needed to be admitted to the hospital for a variety of reasons. Luckily, both the new liver and the new pancreas are doing well. Other signs of infection remain which is why I remain in the hospital still today. I am glad however that we caught things early and that the team was right on top of things. Hopefully. I will be released in the next couple of days and continue my healing at our home away from home. Thank you for keeping me in your thoughts.

February 21, 2019

So far the pancreas transplant has been a complete success. I was moved to my first solid meal this afternoon (February 21st). I am still in shock there is not a pump controlling my blood sugars. They have been perfect and only the new organ is now is control.

If all goes well, I am getting released tomorrow and sent to my extended care stay property.. Keep looking for updates, new pictures and opportunities to donate.

Thank you!!!

February 16, 2019

We got the call at 6 AM to standby as a pancreas may have become available. At 7:47 AM we were told to get in the car and head to the hospital which is in Chicago (4hours). We made it and the surgery is in 1 hour. Here we go.

January 29, 2019

It’s official.. I am on the transplant list and the search is on for a pancreas. I am both excited and nervous as that means the surgery is hopefully closer to saving my life.

Also, a big announcement will be made in the next few days regarding a benefit event that will be taking place.

Thank you all for your continued support and for helping to spread the word of this campaign.

January 16, 2019

All the tests are done. Now we wait for the call that says my place on the transplant list has been activated. That means the active search for a pancreas to save my life is on. Once an organ is found we will have 4 hours to get to the hospital. As you know we live 3.5 hours away so we must be ready to go 24/7.

Where do your donations go and why is your help is needed?

All donations go to help pay for things I am having trouble paying for while trying to fight for my life (medicine, doctor bills, extended 8 week stay in Chicago, and other items not covered by insurance). I am not allowed to work and my husband is my caregiver meaning his ability to work is extremely limited.

Yours donations help more than you know!

December 31, 2018

Happy New Year everyone! I’ve been back in the hospital since Thursday with more uncontrollable blood sugars. The lows hit in the 20’s before I would go into a seizures.

They hope to send me home yet today. Let’s hope 2019 brings a successful pancreas transplant. I hope each and every one of you enjoy a great and healthy 2019.

Jason Enyeart

December 26, 2018

Hello Everyone. Merry Christmas and Happy Holidays. Thank you for all the positive vibes and well wishes. I was released from the hospital Sunday afternoon and we returned back to Indianapolis. It was a quiet Christmas but a nice one.
So far the feedback from the doctors is that the seizures were caused by low blood sugars. We have taken extra steps to help prevent them but will also be pushing forward toward the transplant.

Please keep spreading the word for assistance.

Thank you,
Jason Enyeart

December 22, 2018

The appointments did not go as well for Jason as planned. While in one of the appointments, Jason suffered a seizure and was admitted into the University of Chicago Hospital. Currently, he is awake but they are having issues managing his blood sugars. They have gone low and so high that several times the machine could not register the results. We hope this is resolved quickly and he is able to be home for the holidays.

December 21, 2018

A big day today! Today we visit several specialists in their fields to hopefully get their okay to proceed with the transplant. So a long trip to Chicago, an even longer day there and then the drive home..

Fingers crossed for all go test and scan results so that we can keep moving forward.

December 10, 2018

We have two final appointments before they should be able to activate me on the organ search list. December 21st and January 7th. Provided these appointments show no new surprises and the finances are in place it should be a go for this life saving operation. Thanks for everyone’s help.

December 6, 2018

Well Jason’s campaign has gone live. We hope his friends continue to share his story on social media to help him get the word out.

We all thank you in advance for being a part of this.

December 5, 2018

Just spent 3 days in the hospital with a very high fever reaching 103.7. After several rounds of antibiotics and days of testing fever broke, labs returned to normal and I was released. Blood sugars continue to be out of control ranging from 46 to 489. They continue to use the pump to assist in providing the best treatment possible. Still trying to find an affordable insurance plan for we 2019.

On a positive note, the dentist approved the transplant. Next week I should have the signature for the eye doctor.

Thanks for your help.