As you know, Powerful Patient works with individuals and families with many different conditions, working to empower them to manage their own health. We help them find the resources they need, usually in their own country, within their own healthcare system, and as near as possible to their personal support network of family and friends.
You know too that my particular interest is von Hippel-Lindau disease, which affects about one in 32,000 people worldwide — every country, every ethnic group. For the past 30 years I have worked with families in the United States and in many other countries to learn how to manage this complex multi-system disorder — how to find issues as early as possible, seek constructive treatment, and maintain their quality of life. It has been my joy to watch as families in those countries undertake to work with their healthcare systems to improve care for all people with VHL. It not only benefits the families doing the work, but it benefits the physicians in that country too, and countless more people with this and related conditions in that country. Patients ask the right questions, doctors seek to find answers, and everyone benefits. What Athina has accomplished in Greece, for example, is delightful to see.
For the last ten years I have been working with a family in Algeria, in hopes of doing there what Athina has accomplished in Greece. But the healthcare system there is seriously underfunded and understaffed. Government corruption has undermined what once was a quite good healthcare system in the 1990’s. Many doctors have left the country, discouraged that they can no longer deliver the best care of which they are capable.
I met one family with VHL there are have worked with them to find care — in country when possible, but increasingly outside the country. At first we could get them to France. But in the last few years the government and private funding for sending people with rare conditions abroad has been cut, and COVID has complicated everything.
A year ago it became clear that the father in this family would need another brain surgery. He had successful surgeries in Algiers in the 1990’s, but at this point that hospital has been decimated by continuous budget cuts. That lead neurosurgeon has emigrated to France, and most of his students also left the country. We asked every neurosurgeon in Algeria whether they could undertake this case with hope of a successful outcome. Every one said no. The two who said they had done such surgeries in the past said if they were in France they could do it. but that Algerian hospitals do not have the technology needed for this delicate microsurgery, and do not have the skilled nursing care needed to take care of such a patient following the surgery.
We were not able to get approvals to take him to France because of COVID. Belgium too was closed. One doctor in Germany agreed to take his case, if we would pay up front. At that point I thought, if it is going to cost anything in that dimension, we are better off bringing him to the U.S. where we have other friends and options to care for him outside the hospital as well.
He is 60 years old. He has a rare disease, von Hippel-Lindau (VHL) which has already caused his blindness. Now he needs brain surgery for a hemangioblastoma, a rare tumor made up of blood vessels, for which treatment is not available in his home country. We have arranged for the surgery to be performed here; your help is needed to help with travel and housing. Can you please help?
In March the NIH agreed to take his case under their research protocol. It took us four months to get his visa, and then only with the help of Senator Edward Markey’s office. His visa has been granted, and he is due to arrive in the U.S. on September 13, for surgery in early October. He is fully vaccinated and we are working to take all precautions around COVID. He will quarantine here in Boston for several weeks before entering the hospital.
We will appreciate your donations to help with his travel and housing. We have a GoFundMe page at https://gofund.me/2b9762bd or you can make donations here at PowerfulPatient.org, or you can send a check. We are 501c3 organization. All donations are tax deductible. Thank you so much for your partnership!
- Joyce Graff
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Update 9/23
The last week has been a roller-coaster ride.
When Ferhat and his son Merouane arrived at the airport September 12 to board the plane for Paris, they were denied boarding – communication was very unclear and upsetting, but the bottom line was that the U.S. had instituted a new rule that people coming from outside Europe could not transit through Europe on the way to the U.S., as a way to minimize exposure to COVID. We were able to rebook them on a flight from Algiers to Boston by way of … Qatar, a mere 7000 mile detour.
By the time they arrived Ferhat was exhausted and not in good shape. We thought he would perk up once he was with his daughter, able to eat proper food, and to get a good sleep. By the second day, however, it was clear we needed help. I approached Dr. Othon Iliopoulos at the Mass. General Hospital, asked him to see Ferhat and evaluate the situation. He found him to be “severely neurologically compromised,” and put him into the hospital. The pressure in his skull was severe. We began talking about possibly having surgery in Boston.
On Monday the 20th they sounded hopeful that they could remove the largest tumor (7 cm) and treat the smaller 2 cm tumor with drug therapy. On Tuesday the surgeon was much less hopeful of a good outcome. On Wednesday we cancelled surgery in Boston, as the surgical team was concerned they might do him more harm than good. They had convinced us that he was in the “final chapter of his life,” and would be better off in palliative care as his condition continued to degrade.
As you can imagine, a week and more in ICU at Mass. General is going to be pretty expensive. We had purchased a travel insurance policy for him that will help a bit and are requesting financial aid from MGH’s charitable program so we don’t yet know the total, but your assistance will be greatly appreciated.
In addition to the total seen here online, we have received checks from donors for more than $13,000. We are very grateful for your support for Ferhat in his fight to live. He is a very strong man who has endured 60 years and 10 surgeries for VHL. He is determined to get better. We will see what the next week brings.
- Update 10/3
In anticipation of the surgery Wednesday, they installed a breathing tube and a ventilator. He had been breathing on his own quite well, but they were concerned that he would need this support during the surgery. After we cancelled the surgery, they had a whole procedure for cautiously removing the ventilator that stretched into days. Finally on Sunday they removed the breathing tube so he could talk more easily with his daughter and son, and with family at home in Algeria via WhatsApp.
The next day he passed the “bedside swallow test,” and subsequently had an imaging swallowing test where they watch on ultrasound imaging as you drink and eat, making sure that the food and drink are going down the right throat and not into the lungs. He did reasonably well, as long as the food was not too think. Thick juices or milkshakes, not water.
We asked Medical Records to send all his records to NIH and also to Dr. Lonser in Ohio to check with them one more time before giving up. Can they help him? or is this tumor just too big and dangerous? Is it best to call the game over?
Meanwhile Asma worked with the palliative care team to get him into a regular room. Without all the machinery in the room it was much more pleasant for him and his family.
Friday October 1 Asma brought him home from the hospital. Now we had to plan for the next phase. In speaking with NIH it became clear that the MRI had not been sent to them, only the CT! This meant that they could not decide whether to accept his case until the MRI was received. We will work on this on Monday.
Without the IV medications and fluids he is not doing very well at home. It is clear that we need to take action soon. Monday will be the Decision Day.
Monday morning Asma, her father and her brother will all go for COVID testing in anticipation of airline travel Tuesday.
We will also pick up that MRI disc from MGH and send it over the internet to NIH for their review and final decision.
Tuesday we will put him on an airplane — either to NIH and one last chance at life, or to Algiers to be with his wife for this final chapter in his life.
We will appreciate your continued support and good wishes.
Update: October 12, 2021
