On 23rd of January, more than 10 months ago, Eli was left with 20 sm small intestines, as a result of rare illness and heavy operation. In the first days after the operation, the doctors didn't give her big chances to wake up again...but she survived. She woke up with an open stomach after a week of unconsciousness, smiled and asked for a herbal tea.
To keep her alive without small intestines, she had to be delivered with food and water through parenteral (intravenous) nutrition with big needle stabbed into her chest. The total parenteral nutrition is dangerous, painful and can not last long. Every month without normal food brings risks for Eli's liver and kidneys.
Eli's family and her doctors franticly looked for a way to organize the only ( as we thougt at that time) solution then - small intestines transplantation. As early as February, several hospitals in Europe and America were contacted. The foundation of the Fund for Transplantions was impacted and speeded up in relation with Eli and at the end of April, Eli was the first case reviewed by the Fund's commission. The Fund covered only part of the money needed and the rest had to be collected with the help of charity campaign.These few sentences summarize several months of awfully tensed activity for the people who care about Eli In the meantime she was fighting. She started living in the hospital, made her first step, ate her first bit, stabilized, danced with her stand in the corridors of MMA, learned some Italian.
And when in August, finally everything seemed ready for the transplantation, her body already had decided otherwise. In the first months after the operation, the doctors didn't give much chances of her 20 sm small intestines to absorb food. Elena, as always, helped whether by her smile and optimism or whether from above, turned the odds and started to feed herself more independently. At first they decreased her parenteral nutrition to two thrids, then to half and finally it reached one third of her nutrition. Eli's 20 sm of small intestines proved to be enough to deliver more than half of the food she needed, which dicreased the risks for her life. Her indicators became to look as the indicators of the healthy person, she didn't have kidney and liver crisis.
If there were no needles and hoses attached to her body, no one would have said that this smiling girl lives in a hospital…
And the new hope arrived – it is called STEP procedure (serial transversal enteroplasty) for lengthening of the intestine. This is the surgery, which have already returned the smile of the parents of little George (google translate). The difference between STEP and transplantation is that the transplantation is dangerous surgery because of the risk of intestine rejection from the body and this can be fatal. STEP doesn’t pose such a risks. After the transplantation, the patient lives all his life under immunosuppressants. During the STEP, 20 cm intestine can be lengthened up to 40 cm and then the person can assimilate two times more food with the new intestine. If this will be not enough, then another STEP can be implemented and intestine can be prolonged up to 80 cm and then the person can start normal life.
Eli needs to go to Boston for the STEP. The medical team in Boston have examined all preliminary medical exams and appears that STEP procedure is possible. In case the doctors decide in the last moment that STEP is too complicated for Elena, then she will have to go to Bologna for small intestine transplantation. However, her body have so far shown miracles and most probably the STEP will be the option.
Elena continues to live in the Bulgarian hospital. She has already longer apprenticeship than some of the nurses… Although the MMA team of doctors and nurses make miraculous efforts, the current state of Eli is not normal. All over the world patients on parenteral nutrition live at home, move freely and even work. In Bulgaria there is no legislative base for that and hence no provision of funds for parenteral nutrition at home. Even now, some of the medications have been paid by MMA using semi-official ways (we thank them!) and from Elena’s charitable account (we thank all the donators!).
The Ministry of Health have launched initiative to change the legislative base so that Eli can live at home, be able to travel to the mountains and not to be forced to return to hospital room at 9:00 pm (21:00 o’clock) every evening.
STEP procedure doesn’t lead to immediate improvement of Eli’s state and Eli will have to be on systems for more months. It is not acceptable that Eli will have to spend all this time at the hospital again. The medical team in Boston is discussing the latest details regarding the STEP surgery and most probably in the next couple of weeks Eli will have to go in Boston for examinations. The offer for 320,000$ is already uploaded in the Documents section.
Eli is trying to eat as much as possible and to keep her weight above 36 kg (79 pounds). She walks around the city for 3 hours a day, this is what she has been allowed. She tries not to get bored and to take care of herself. Eli started to practice the English language, got a haircut and looks pretty and smiley as always…
The small intestine transplantation in Bologna costs about 600 000 leva (400 000 $). Bulgarian Fund for transplantation provides 500 000 leva (330 000 $), the remaining 100 000 leva (70 000 $) have been raised through charity. For the STEP procedure we received the offer for 480 000 leva (320,000 $). Up to now, the government hasn’t provided any funding for the STEP. The parenteral nutrition and medications are extremely expensive – 12 000 leva (9000 $) a month. Most of these expenses have been provided by MMA, but some 3 000 – 4 000 leva per month have been from Eli’s charitable account.
Elena’s case have been discussed many times at all departments of Ministry of Health, Fund or transplantation, National Health Insurance Fund. Each instance passes the buck to other instances and often we run in a circle. On every table the Eli’s documents and letters lay untouched and gather dust for more than a week, and after that the documents are sent to other tables. The government institutions have to cover all 12 000 leva monthly expenses and to give guarantees to Boston hospital for the STEP. All instances in the Ministry of Health agree that these funding are Elena’s right, but there is no legislative base for funds to be assigned. The Ministry sent its statement to the financial minister Diankov, but still there is no answer two weeks later regarding parenteral nutrition and medications. The offer we have been waiting from Boston will be sent to Diankov, as well. So far, in our history it looks like there is no case where the government covers all the expenses for the treatment abroad. For the little George, government paid only half of the 400 000 leva expenses for the STEP procedure in Boston, and this is after the huge discount offered from Boston.
We expect very soon the decision of the Bulgarian authorities regarding the offer from Boston for STEP procedure. Eli has to go to United States for preliminary exams. We hope things to get done quickly so that Eli could stay in Boston and have a STEP surgery if medical examinations allow that. This is the good variant. The bad variant is Eli to return back to Bulgaria and then to wait for funding the government doesn’t cover for now. Meanwhile, Eli continues to spend money from her charitable account for surgery for the needs of parenteral feeding and medications. So far, from Eli's account 20 000 leva have been spent for medications and parental nutrition and many thousands leva from her personal and family savings. Most probably we will have to start again the charity campaign for Elena.
Many people and organizations helped Eli. Some of them are the foundations “Kiril Vajarov” and “Raina Kabaivanska”, famous Bulgarian and foreign doctors and surgeons, sport men like George Mladenov and Titi Papazov, the musicians from P.I.F. and Ostava, companies like Vivacom and AVAir; the entire Faculty of Chemistry at Sofia University, where Elena finished her high education recently, took participation in Eli’s campaign; and many, many other people…