But...so what has happened since Mailia's stem cell transplant this past June? This is where I will begin explaining what has transpired and hopefully bring everyone up to speed...with an update I have so wanted to share this weekend.
About a month ago, I decided to drop Dr. Randas Batista, who is a heart surgeon from Brazil, a quick hello and update on Mailia. He told me that the 30 year old female Eisenmenger patient he operated on last year in Syria, was doing well and getting married and that he would be attending the 3rd Razavi International Cardiovascular Surgery Congress in the city Mashhad Iran October 5-8 and extended an invitation to Dr. Black and I...to come see his procedure first hand. I replied back to him and also to Dr. Ahmad Rajaii-Khorasani that I was thrilled and grateful for the invitation, but after checking flights, costs and logistics, there just was no way I could do it with our limited financial resources...thinking we must save for Mailia's future procedures although this had great merit for my going and attending, so as to futher document the advantages and benefits of Dr. Batista's procedure in treating Eisenmenger's syndrome...I had to regretfully say that I could not go.
So after taking Mailia to California for her 3 month follow up appointment to see her other Cardiologist Dr. Popper, we waited with great anticipation during this past month, to see what he and Mailia's heart surgeon, Dr. Michael Black would recommend as far as a surgical option or path forward. Bare in mind, Eisenmenger's syndrome is a condition that has no viable medical fix curently here in the US, only double lung and heart transplantation which has never been an option for Mailia per many doctors recommendations and expert medical opinions.
While waiting for direction from California...Mailia had a scheduled followup appointment last Wednesday with her local cardiologist Dr. Carl Garabedian from the NWCCHD in Spokane, Wa. He was happy to see her, and asked how she was doing. We told him she was doing much better, but that after a month, we were still in limbo with our team down south...as to a path forward. He excused himself for a moment...and disappeared out of the room only to return 5 minutes later, saying he had made a call to Dr. Black, and discussed Mailia and wanted to know Dr. Blacks and Popper's plan for her and also if it might not be best to perform a new right heart catherization to measure her pressures and get good data, if she will be able to go forth with the banding of her pulmonary artery...or, the placement of a double flap patch to her VSD or...a RVAD or ????
Dr. Black felt this was a good idea and said to proceed with the cath. We thanked Dr. Garabedian and headed home, feeling anxious but relieved that we were going ahead with additonal testing to validate her potential surgical procedure(s). Mailia of course...was oh No...not again!
The following day, I placed a call into the NWCCHD to make Mailia's appointment and while waiting to hear back from them, decided to touch base with Dr. Zannos Grekos of Regenocyte, who performed Mailia's initial stem cell transplant in the Dominican Republic. I mentioned to Dr. Grekos that we had a plan now, and that was to have Mailia go through another right heart cath so a decision could be made on if or when, she could have her initial heart surgery. He asked me...to tell him, how she was doing. By that...he meant, what do you see that is different? I told him...that Mailia has more energy. Her oxygen saturations have not changed, she still requires oxygen but she has more energy. He asked again, but to what extent...would you say, a 10%, 30% or 50% improvement overall? I told him that I felt she was about 30% and that was conservative.
Dr. Grekos told me..."You need to tell her doctors that, and hopefully this will be the conduit to giving us the go ahead to band her PA, but I still think, she is going to need a second round of stem cells". I asked Dr. Grekos, this question: If after Mailia has this upcoming right hearth cath, and they then decide to go ahead as planned with banding her PA...how long after this, should she have a second round of stem cells? Dr. Grekos said...that after 6 weeks post surgery, allowing enough time for her to heal, she should benefit from having her second round of stem cells.
Great! Wow! Okay...
So now, I feel a whole lot better, but still a little perplexed about the potential nay-saying and concern surrounding the PA Banding or double flap-patch or RVAD. Dr. Black, has not yet sold the IRB (Internal Review Board) of his hospital, on the idea of treating one very special patient with this modality. Has never been done for a VSD successfully...at least with a stem cells backup...but it has been done, abroad of course.
So here I go again, my top guns who I lovingly and fondly call my angels, prompting me to contact Dr. Ahmad and Dr. Batista once again, before the conference next week in Mashhad Iran. I told them I was so grateful for their gracious invitation but would not be able to come to witness Dr. Batista's operations nor be able to validate the one Eisenmenger patient he operated on last year who would be in attendance at the conference to give her testimonial of her healing miracle. And if they could please share their clinical data or videos on their presentations with us and Mailia's doctors.
Dr. Batista wrote me back, as did Dr. Ahmad Rajaii-Khorasani and said that it was handled. Dr. Batista forwarded an email to me that he received from Dr. Joel Dunning from London England, who is planning on attending the conference in Mashhad Iran and will be interviewing Dr. Batista, for a series titled "The Giants of Thoracic Surgery" to be featured on CTSNet which is the World's Premier Website for Cardio Thoracic Surgery!
Of course, I quickly emailed back and thanked them and quickly emailed Joel Dunning to ask humbly if he would be able to focus more on questions relating to Eisenmenger’s syndrome and how and why Dr. Batista believes that banding the PA is so important to a patients regression of the disease and HOW this can be accomplished?
I explained our situation, and the need for more clinical data to substantiate Dr. Batista's stance on banding the PA in Eisenmenger's syndrome and also gave him Mailia's web site and blog in hopes, that he would agree to document not only the interview, but his patient as well.
Well, bless his heart, Dr. Dunning graciously replied to my e-mail and said the following:
I have already seen your website in my research for the interview. Do not worry. I will be putting this interview on the front of CTsnet the worlds biggest cardiac surgery website.
Wow...! I emailed this to Dr. Black in California and he too...said "The more information for the IRB...the better!
So this is where we are at. We have confirmation that Mailia is scheduled for her next right heart catherization procedure on November 2nd up at Sacred Heart Medical Center in Spokane, Wa. Next we will hopefully get a path forward on Mailia's surgical procedure(s)...this herein, reflects what we have termed Phase 2!
After Mailia's procedure, we will figure out the logistics for another round of stem cells for her. This will eventually be her Phase 3!
How will we fund all this?...I am chuckling right now because I truly don't have a clue but you know what?...We trust...and we have faith! It will happen and it will all unfold beautifully!
How did we luck out?...I am humbled and intrigued at the incredible team of doctor's and surgeons we have assembled but credit a higher power with this blessed and unique opportunity for Mailia.
Our heroes of medicine, those unique individuals who in their communication tell me "Not To Worry" my God, I have so much faith and admiration for the lot of them.
Thank you good doctor's! We love you and appreciate all you are doing for Mailia and her Miracle of healing.
Dr. Batista, Randas - Curitiba, Brazil
Dr. Black, Michael - California Pacific Medical Center
Dr. Garabedian, Carl - NW Center For Congenital Heart Disease
Dr. Grekos, Zannos - Regenocyte
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