Help Tomeka Eat Again

Update as of 03/19/2024

Hey everyone. Happy New Year. I do hope each of you is well and in good spirits. I also hope that the first 3 months of 2024 have been rewarding and amazing for each of you.

On April 23 - May 1, 2024, I will be going back to Ohio for more medical treatment and see Dr. Chakraborty and the surgeon, Dr. Perry who performed the Heller Myotomy.

I wanted to give an update that I have been holding off on, but I made this journey public to raise awareness and funds around Achalasia.

Since the surgery in 2021, I have continued to go back and forth to Ohio, to receive specialized care from Dr. Chakraborty and his wonderful team at Ohio Wexner Medical Center.

The last I spoke with Dr. Chakraborty, I completed more testing to see how my upper, lower, and pyloric sphincter muscles were doing after LES Heller Myotomy surgery.

It was discovered that all my sphincter muscles, including the lower one the surgery was completed for, were still not opening properly, which has gradually led to more difficulty and discomfort in eating soft foods. I am constantly having esophageal spasms, in my chest, which lots of liquid lidocaine helps to control. This week, I have chosen to go back to puree foods and shakes. it still gets stuck but it is a lot easier to force down with water.

So I am going back to Ohio to see what the damage is now. I am also working to find a good Gastroenterologist here who is not just about experimenting on women, especially black women, dealing with Achalasia. The truth is it is such a specialized autoimmune dis-ease, that you need doctors who are well-versed in Achalasia and Gastroparesis and have excellent bedside manners. Achalasia and Gastroparesis rob you of a very essential organ in the body, the esophagus. Never in a million years, would I think I and countless others would be dealing with this dis-ease.

Thank you to all who have supported me in the past. I am still fighting to eat and not be on a feeding tub like many I've seen and know of.

Please continue to keep me and my family in your thoughts and continue to educate and share my message to help save someone else.

For those who have donated, thank you again. If you would like to contribute to my trip in April, please consider making another donation.

Thank you again.

Hugs and kisses.

Peace and balance.

Love, Tomeka & Josh

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THANK YOU! THANK YOU, to all my supporters and donors around the world. None of this would have been possible without each and everyone on you. 

I appreciate and love and heart ❤️ everyone who has donated to my #HelpTomekaEatAgain campaign as I continue to tackle #Achalasia. 

We are still in Phase 5: Phase of Recovery in our #HelpTomekaEatAgain Achalasia Journey.

I still have several procedures to complete from last year that were put on hold, due to a number of things like lack of funds and knee surgery. The goal is to get back on track and complete this coming April/May of 2024 for it was discovered that my upper, lower, and pyloric sphincter muscles are still closing up or not opening as they should. In addition, Gastroparesis has been officially diagnosed and it's has been a whole other level of medical dis-ease we have to deal with, in dealing with Achalasia. 

We will have to continue raising money for transportation, hotel accommodations, and incidentals, along with her 20% of medical costs of the bills that are coming due.

We still have $3,925.00 to go. Thank you to everyone who has donated so far.

Remember...

ACHALASIA HISTORY

From Tomeka: "Bottomline, my life has to change again. The esophagus & digestive tract is starting to fail. All I can do is do what's being asked of me to prolong my life & help me (& others) bear these autoimmune dis-eases while we are alive. I also have to keep praying & chanting.

Thank you to all my donors and supporters all over the world. Together we will continue to help me #eatagain and also help someone else's live who may not know or is just starting to learn about this Achalasia Autoimmune Disease.

Peace and blessings and THANK YOU FOR ALL THE PRAYERS & EVERYTHING!!! ❤️❤️‍"

 ~Love, Tomeka Napper #HelpTomekaEatAgain

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Update as o 05/11/2022

We are entering a new Phase of Recovery (Phase 5) in our #HelpTomekaEatAgain Achalasia Journey.

 We will have to continue raising money for transportation, hotel accommodations, and incidentals, along with her 20% of medical costs of the bills that are coming due.

We still have $4,230.00 to go.

 From Tomeka: *Bottomline, my life has to change again. The esophagus & digestive tract is starting to fail. All I can do is do what's being asked of me to prolong my life & help me (& others) bear these autoimmune dis-eases while we are alive. I also have to keep praying & chanting.*

Thank you to all my donors and supporters all over the world. Together we will continue to help me #eatagain and also help someone else's live who may not know or is just starting to learn about this Achalasia Autoimmune Disease.* Peace and blessings and THANK YOU FOR ALL THE PRAYERS & EVERYTHING!!! ❤️❤️‍

~Love, Tomeka Napper #HelpTomekaEatAgain

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Update as of 05/10/2022-

Tomeka is back from Columbus, Ohio after her Phase 4 follow up appointments on her #HelpTomekaEatAgain Achalasia Journey. Results and Revised Game Plan from Gastroneurologist and Achalasia Specialist, Dr. Chakraborty, is as follows to prolong and adjust Tomeka's Quality of Life:

 1. Her entire Esophagus is still tightening after #Achalasia surgery, especially the upper esophageal sphincter muscle, which wasn't happening before

 2. The motility (ability to move) in her esophagus & stomach is gone. A lot of mucous, liquid, & Food was found in her esophagus & stomach after a 3 day fast & emptying of bowels. Have to speak more with her Neurologist on this as there are more concerning underlying issues causing the Achalasia

 3. Dr. Chakraborty had to dilate all her esophageal sphincter muscles: her Upper (by wind pipe), Lower (lets food/liquid into stomach), & the Pyloric (let's waste out of stomach) because they are not closing or opening properly according to the medical guidelines & standards. The Pyloric Sphincter Muscle is only opening to 4.2 cm in diameter, *after* being dilated. Its should naturally open to 10+ cm in diameter. *ALL OF THIS IS A HUGE PROBLEM.* She cannot eat & go lay down. Must eat upright or standing.

 4. Her rectum & lower intestines are also not opening, closing or relaxing properly, just like her esophagus.

 5. In addition to Achalasia, *Gastroparesis (delayed Gastric emptying) has "OFFICIALLY" been diagnosed.* With Gastroparesis, the food is taking too long to empty stomach into intestines & just sits for days before being released into intestines. There is no cure for either.

6. Have to speak w Surgeon in Ohio who did her Heller Myotomy surgery back in Nov 2021 to understand why Lower Esophageal Sphincter muscle is still closing. Dr. Chakraborty thinks they may have wrapped the stomach too tight around it.

 7. She was recently hospitalized upon her trip for massive internal and external rectal bleeding caused by fissure tears and hemorrhoids in her lower bowels, due to Gastroparesis, which also leads to impactation of waste in intestines. Dr. Chakraborty (GI Specialist) and Dr. Hussain (Colon Surgeron) are still assessing next steps for this. She will be on strong stool softeners, laxatives, and a specialized compound medical cream that comes directly from pharmacist for the next 6 months.

 8. She cannot eat anything 4 hours before bedtime due to Lower esophageal Sphincter muscle still closing & not opening properly. It can cause aspirating in her sleep by food coming back up because it doesn't get into stomach, which can lead to death.

 9. She's been put on a Gastroparesis Diet. ‍♀️

10. She goes back to Ohio for another procedure to address the three 3 Esophageal Sphincter Muscles not relaxing. *The date has not been set, yet.*

 

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05/01/2021

Imagine not being able to eat any of your favorite foods like pizza, popcorn, beans, salads, steak, anything liquid or solid for that matter. This is currently my life.

This fundraiser is for my life-saving esophagus surgery that will be performed at the Ohio State University Wexner Medical Center, under the guidance and direction of Dr. Subhankar Chakraborty. Without this surgery not only am I denied the opportunity to eat a normal diet of solid foods but there is a good chance that I can choke to death in my sleep.Raising funds to pay for this procedure is of the essence. This surgical procedure is a three-month ordeal and I am in need of all of your support and love, monetary assistance, in-kind, and shares to get through the next three months and come out the other side in better condition than my current difficult state.

BACKGROUND

In 2019, after 5 years of misdiagnosis and telling doctors I was having difficulty swallowing, an Esophagram Barium test finally confirmed I was suffering from Achalasia, a rare esophageal motility disorder. Achalasia has caused a partial blockage in the lower part of my esophagus, causing the inability to consume anything near a normal diet, and putting my life at significant risk 

My quality of life has been severely impacted. I suffer from daily/nightly vomiting and constant aspiration leading to recurrent pneumonia. I can only eat once each day and have difficulty keeping that one meal down. As you might expect, my nutrition has suffered greatly as a result. I currently cannot sleep flat in any bed. For 2 years now I have been sleeping on a sofa at a 90° angle. This is my life. My current diet is liquids only. I have lost 50 pounds and will continue to lose more. I would not wish this on my worst enemy. This is why my friends, family, and I are calling the campaign “Help Tomeka Eat Again…”

ACHALASIA HISTORY

According to the National Center for Biotechnology Information, “Achalasia is characterized by esophageal aperistalsis and impaired relaxation of the lower esophageal sphincter (LES) during deglutition (i.e., swallowing). The annual incidence of achalasia is approximately 1 in 100,000 people worldwide, with an overall prevalence of 9 to 10 in 100,000 people.

Patients often present with progressive dysphagia (i.e., problems swallowing certain foods or liquids) to solids and liquids, heartburn, chest pain, regurgitation, and varying degrees of weight loss or nutritional deficiencies.

Achalasia is a heterogeneous disease categorized into 3 distinct types based on manometric patterns: Type 1 (classic) with minimal contractility in the esophageal body, Type 2 with intermittent periods of panesophageal pressurization (i.e., contraction of both sphincters and the esophageal muscle), and Type 3 (spastic) with premature or spastic distal esophageal contractions.”

Since 2019, I have suffered from Type 2 Achalasia and my esophagus is now approximately 12 cm in length instead of the standard size of 2 cm. After 5 postponed surgeries due to COVID-19 and dangerously low TSH, T4, and T3 levels confirmed in November 2020 (for my thyroid gland was removed in February 2015, due to thyroid cancer), things have gone downhill fast. While hospitalized from April 5 through April 8, 2021, my current GI Doctor and Thoracic Surgeon failed to provide me with adequate patient care and due diligence.

Knowing my esophagus was several centimeters larger than in 2019, it became evident to me that they did not care about my well-being or were truly invested in making sure the proper surgical procedures would be performed. I was told, “some surgery is better than no surgery and the window of opportunity is closing before we have to do a full esophagectomy.” This was unsettling to me, causing me to seek a second opinion, resulting in my decision to move my surgery to The Ohio State University Wexner Medical Center, a facility that specializes in motility disorders and esophageal diseases.

NEXT STEPS

If you knew what I have been through and the back and forth with numerous medical professionals here in South Florida concerning this disease, you would understand why we are here. Nevertheless, whether the surgery was in South Florida or not, the costs to me and my family concerning this surgery are going to be astronomical.

I am in dire need of your love, monetary support, in-kind, and shares to get through the next seven (was originally three, but COVID-19 rose again) months from when campaign started.

We are raising funds to cover the following expenses:

●     Travel and accommodations back and forth from Fort Lauderdale, Florida to OSU Wexner Medical Center in Columbus, Ohio for tests and for surgery. Surgery finally scheduled for November 10, 2021.

●     Direct financial assistance to cover the 20% of medical costs not covered by insurance.

●     Direct financial assistance to cover out-of-pocket Nurse and Personal Care Assistants during the estimated six (6) to (8) weeks of recovery.

WHAT YOU CAN DO TO HELP

1. Donate. No amount is too small. You may remain anonymous if you wish.

2. SHARE, SHARE, SHARE, even if you are unable to donate.

I just want to eat again and to go to sleep without the fear that I may not survive the night. Though there are no guarantees, my having this surgery, with your generous assistance, offers me my best and last chance.