Mailia Follows Up With Her Florida Heart Surgeon Dr. Michael Black at St. Mary’s Medical Center in West Palm Beach

St. Mary's Medical Center - Palm Beach Children's Hospital Nov. 04, 2011

We left off in our previous post arriving into Miami from Mailia’s recent adult stem cell transplant down in the Dominican Republic. Mailia had been scheduled for a follow up visit with her heart surgeon, Dr. Michael Black who is world renown and had recently accepted a new position with St. Mary’s Hospital in West Palm Beach Florida while still maintaining his privileges and connection to his hospital in San Francisco, California Pacific Medical Center.

What a remarkable opportunity for Mailia to have the best Adult Stem Cell clinic AND Cardio Thoracic Surgery expertise in such close proximity which logistically for her, works out perfectly.

After clearing customs with all our belongings, we proceeded to our rental car and tried to figure out how to get us headed north, out of the maze of traffic and freeways.  Mailia and I plugged into her computer to get us going in the right direction while Max did his best to navigate through all the hustle and bustle the end of the day usually brings. Still had to stop at a convenience mart to ask directions after getting detoured a bit.  Oh well.

I found us a hotel about a mile from the hospital…where we checked in and conveniently found a place to finally eat dinner…yep, another Cracker Barrel to Mailia's utter delight. The webkinz of the day...a black footed ferret she had to have to add to the collection.

We all got a good night’s rest and monitored Mailia for any fatigue or discomfort from her invasive procedure just two days prior. She was happy and feeling no pain.

The next morning, Nov. 4^th 2011 we got to the hospital and checked in with the beautiful administrative staff at Dr. Blacks new office.  Here we visited for awhile, checked Mailia’s vitals and all her medical records before proceeding over to the hospital for her scheduled Echocardiogram study. Dr. Black was a little surprised that Mailia had showed up with a replacement “SteelDust”…a stuffed toy that was supposed to resemble her little service dog that he went as far as noting that fact in her medical report he later generated from this visit which we will expound on shortly.

Dr. Michael Black & Mailia

After checking in at the hospital…I asked Dr. Black how he was liking his new endeavor and he was really thrilled with the opportunity and that they were in the process of building his new surgical suite and getting him the best profusionist and surgical staff to complement his team. I snagged a link to a PDF that you can click on to read about him now.

Dr. Black introduced us to one of his cardiologists, Dr. Emmanouil Tsounias who was quite interested in Mailia’s adult stem cell treatment protocol. Here she is with the two and her echo tech during her test and studies.



For the most part, this 2 hour consultation and follow up visit with Dr. Black went extremely well and we are pleased with his opinions and observations concerning Mailia.  He was quite hopeful that some variant of surgery may be possible if the stem cell therapy allows for a marked reduction in Mailia’s pulmonary vascular resistance (PVR).

He stated in his report that assuming the stem cell therapy has a positive result, that a  6-month window may be made available for possible surgical intervention.  If and when her PVR falls, a fenestrated patch closure of her VSD, a pulmonary artery band like the one Dr. Batista espouses for Eisenmengers, (see video at bottom of the Dr. Batista page) or a combination thereof may be possible with the likely use of a pulmonary vasodilator. He would also consider a right heart assistance device implantation should Mailia’s PVR remain unchanged following this second round of stem cells.

He encouraged future office visits over the next 3-6 months with Mailia’s cardiologist back home, Dr. Carl Garabedian…and that a repeat right heart cath at 6 months would be needed which has now been scheduled for June 13^th, 2012. He told us the surgical options excluding the RHC are time limited depending on the response of her pulmonary arteries to the autologous stem cell therapy.

He left us with the fact that the RVAD is the one option that we can visit at a later time.  That medical advances, both technological and pharmacological may offer Mailia further options and hope once available.  He told us we must be open to new advances and push forward but remain cognizant of our mission of – Primum Non Nocere.  First do no harm.

We also believe when Mailia is able to undergo a surgical repair, that it might be beneficial for her to undergo another stem cell treatment afterwards. Because of this, we spoke with Dr. Black about the financial ramifications this will have upon our family with anticipated costs surrounding additional treatments and mobilization not covered by our insurance. We discussed our ongoing fundraising efforts and I asked him if he knew of any philanthropic avenues that we could explore to help us.  He said he did and his recommendation was that we do a video of Mailia telling her story and journey which we plan to get done as soon as we can.

Back to our visit…we gave hugs and gratitude and said our good-byes and got ourselves headed back to Bonita Springs through Alligator Alley to spend a few days getting Mailia rested for her flight and trip back home later the following week.

We got back to our beautiful condo to remind us once again of the incredible generosity of Nahla and her family, Mailia was excited to see her little moorhen friend Stanley swimming in the pond.  We then touched base with everyone from our Regenocyte family, laid out all our gratitude and counted all our blessing and then, called it a week.

Next post...Mailia participates in a Naples fundraiser to benefit Mailia's Miracle and her nonprofit The Alliance for The Advancement of Adult Stem Cell Therapy and Research...fun times!~

Mailia's Miracle Finds New Eisemenger's Syndrome Patient in Mumbai, India

Taj-Mahal Photo for Mailia from Hari

2011 found us bringing in the New Year with a beautiful email and greeting from a young man we have fondly come to know as "Hari" who is also Eisenmenger's Syndrome like Mailia, but a world away living in Mumbai India...and with his permission granted...we wish to share his first email to us, with you:

Hi Mailia and her wonderful parents,

My name is Harikrishnan K R. I am 28 years old and am a VSD - Eisenmenger's Syndrome patient. I was diagnosed with VSD at the age of 6 which was obviously beyond surgical stage. Doctor's suggested my parents that there is a chance for the defect (ie, the hole) to close by itself as age goes by. The medical follow up facilities in the country where I live (Kerala, India) was very minimal during my childhood and my family believed the doctor's word of a self future cure. I never had critical issues with my illness apart from panting when I run or walk through slopes and a blueish tinge on my finger nails and lips. I had myself involved in all sort of sports and games despite my physical limitations due to my illness. I had only 2-3 medical follow ups done in my life and I was 27 years old when I felt the first gear change of my illness.

I started coughing up blood due to the high pressure on my lungs. It happened in Feb-March 2010. Ever since then I am in regular medical follow up and now I live in Mumbai, India. I am seeing Dr. James Thomas a famous thoracic surgeon in India. He suggests a heart-lung transplant for me. My condition is getting worse for the past 2 months. I gave up my IT job and started working as an Office Clerk in an Import Company near to my home. Due to a recent hospitalization I'm afraid of losing that job too.

It was during my idle hours in home I started searching on the net for possible modern technics for a cure from my situation. It was during one of those session's I came across "Mailia's Miracle". I felt extremely positive after going through the entire story.

I want to thank from my heart for initiating such an online resource for sharing Mailia's story. In my lifetime I haven't seen a person who shares my grief. Later I found out it happens only to 1 out of 8 Lakh people. Even the right information about this condition is very rare in India. I came to know that my oxygen saturation is only 84-85 only when I was hospitalized last year. Mailia's story gives me hope and light to an extent that cannot be expressed by words. I wish and pray for the well being of Mailia as early and smooth as possible.

With lots of prayer's and wishes for Mailia.

Harikrishnan K R

Harikrishnan "Hari"

So over the course of this past month, we have chatted and emailed Hari back and forth, covering all aspects of potential therapies and research he has inquired about, where it concerns Mailia's journey to be healed from Eisenmenger's.

One was the opportunity for us to email information to his Cardio Thoracic Surgeon, Dr. James Thomas about the path we are exploring for Mailia's future surgical treatments and Adult Stem Cell Therapy.  Dr. Thomas so graciously accepted our communication with him...and we know, Hari is in good hands and we pray, will too...have a positive outcome now and bright future like Mailia.

Adult Stem Cell Therapy is in its infancy in India...but being afforded to those wanting to obtain it.  Hari has a great support system both at home and in his medical team.  Both Hari's parents are Ayurvedic physicians in India...hence, probably why Hari has been able to survive Eisenmenger's well into his late 20's including his practice of daily yoga.  Ayurveda is considered a form of complementary and alternative medicine here in the west.

We encouraged Hari...to do his due diligence and find the means to possibly connect with Dr. Randas Batista down in Brazil so as to work with his heart surgeon with a possibility that might afford Dr. Batista to come to India to help him.  We also encouraged Hari to start a web site and blog to start documenting his incredible journey, so as to help others in his region and country.

We humbly ask all of Mailia's followers to please send prayers and blessings to Hari...he too, is so diserving of our love and help.  Thank you Hari...for finding Mailia's Miracle!

Namaste...

The Goforth's...Max, Andrea & Mailia