Pune o fapta buna la temelia Clinicii Nera

duminică, 26 septembrie 2010

Sa salvam o viata!

Cristina are nevoie de ajutorul nostru.
Revin cu rugamintea.

... Cristina nu s-a dat batuta, a sunat la Minister, a luat legatura cu cei din conducerea registrului si se pare ca a reusit imposibilul... de ieri, 2 august 2010, Registrul va testa zilnic cate 15 persoane. Statistic, sansele de a gasi un donator compatibil sunt extrem de mici (1/80.000 pentru persoane intre care nu exista legatura de sange), dar Cristina nu se lasa, lupta pentru viata ei si e increzatoare. Haideti sa-i fim alaturi cu ceea ce putem: 2 eprubete de sange!

Toti cei care doresc sa se testeze sunt rugati sa trimita datele personale (nume complet, CNP, adresa mail si nr. de telefon) pe mailul Cristinei dinucristina8223@yahoo.com, pentru a fi inscrisi pe lista si programati pentru recoltare. Aceste teste vor ramane in Registrul Roman al donatorilor onorifici, urmand sa fie de folos si altora aflati in situatia Cristinei.


Detalii puteti gasi si aici sau, direct, pe blogul Cristinei.

Update cu raspunsul Cristinei Dinu: Nu stiu daca ai reusit sa citesti toate informatiile relevante de pe blogul meu, daca nu, te rog mult sa citesti, ca sa nu te plimb degeaba pana la institutul hematologic.
Iti voi da doua linkuri cu informatiile importante, ca sa nu mai stai sa cauti in blog :
http://cristinalilianadinu.blogspot.com/2010/08/schimbare-de-plan-detalii-si-multumiri.html
http://cristinalilianadi
nu.blogspot.com/2010/08/detalii-privind-inregistrarea-in.html
Ce este foarte important de retinut este ca testele se pot face pentru mine, dar nu numai pentru mine. Adica se fac numai daca esti de acord sa fii inregistrata in Registrul donatorilor de celule stem si sa fii disponibila sa donezi pentru orice alt pacient care ar fi determinat ca fiind compatibil cu tine.
Este o conditie impusa de ei pentru a ma ajuta, pentru ca testele presupun costuri foarte mari (aprox 1000 euro de persoana testata), si este singura varianta de a cauta un donator compatibil.
Dupa ce citesti informatiile, te rog sa imi spui in ce zi/zile ai putea si vrea sa mergi pentru testare, de luni pana vineri intre orele 12 00 si 14 00.
Eu iti voi confirma programarea in functie de preferinta ta.
Multumesc mult, inca o data!




Details on how to join the Stem Cell Donor Registry

Stage 1
Information
First, by going to the testing center, you will have to solicitate informations about what it takes to register into the stem cell donor registry, about the principles of stem cell donation, about the rights you have and about the stages you will go through. Also you will need to be informed about the stem cell harvesting procedure and you must take into consideration that, although you can change your mind any time, even after you signed the agreement form to join the registry, doing so when you are identified as a compatible donor for a patient that needs a stem cell transplantation means that there are big chances the patient will die, , finding a matching donor being extremely hard.
Stage 2
Filling in the agreement form and the medical questionnaire
A. The agreement form
The agreement form contains fields where you have to fill in your personal data and by signing it:
1. You agree:
- To have a sample of your blood taken (same procedure as for any test that requires blood sampling), in order to do the HLA typing – molecular-biology test that will determine the level of compatibility between the donor and the patient who will receive the stem cells, and also in order to have some tests that will determine if you suffer from any disease that would put the patient’s life or your life at risk.
- To join the National Stem Cell Donors Registry
- To remain registered into the registry, if possible, until the age of 60
2. You declare that you are aware of the fact that you can withdraw your consent , and as a result to be deleted from the registry.
3. You confirm that you were informed that:
- The donation will be voluntary, anonymous and there will be no financial rewards.
- The harvesting of the stem cells will be guided and watched over by a hematologist doctor from a specialized center .
- You are not allowed to find out who is the patient that received your stem cells and vice versa, the patient can’t find out who is the donor on very rare occasions, you might be asked to donate again, after a short period of time from the apheresis moment, for the same patient;
You will have to notify the registration center any changes of your address, phone number, or significantly changes in your medical condition.
B. The medical questionnaire
Filing in the medical questionnaire helps evaluate, together with the virology tests, your medical condition at the moment of registration in order for the medical staff , in case you are compatible with a patient, to know about any particularities that could affect the harvesting process or to determine if any special measures are required during harvesting or during the transfer of the stem cells to the patient.
Stage 3
Blood samples will be taken in order to perform the HLA typing and the virology tests.
Stage 4
Harvesting the stem cells
If you will be identified as a compatible donor for a patient in need of a stem cell transplant, a rare occurrence, (chances to be compatible with a patient are, according to statistics, 1/80 000 so some of donors are never asked to donate because of that), you will be contacted, you will be asked for your consent again, and you will be called in for a medical exam and blood tests in order to determine your health condition at that exact moment.
If you don’t suffer from any disease that would put your life or the life of the patient in danger, you will go through the process of marrow stimulation. This will be done by injecting a substance called stimulation factor ( most frequently used is filgrastim, a substance that imitates the natural stimulation agent present in our bodies) that will determine the marrow to produce stem cells and then will determine those cells to migrate to the peripheral blood stream, in order for the apheresis to take place (the collection of the stem cells from the peripheral blood is called apheresis).
***Filgrastim is used based on a standardized protocol, its testing started in 1966; since then numerous clinical studies were performed, now its use is approved as a standard protocol in USA, Europe and Japan since 1991.
You can do the shots yourself after specialized training or somebody close to you can be trained to do them. Of course you have the choice to go to a medical center in order to receive the shots from specialized medical personnel.
Shots are administered during a couple of days, in the meantime your blood will be tested periodically to determine if the number of the stem cells have reached the optimal number for performing the apheresis.
Some of the people receiving the stimulation factor accuse a mild bone pain, muscles pain, headaches, for which the doctor can prescribe painkillers.
The apheresis procedure, which is similar to the blood donation procedure, has some particularities: it starts with placing a needle into the vein on each arm and then connecting the needles to the apheresis machine.
From one arm the blood goes out and through the apheresis machine and returns through the needle in the other arm. During any moment of this procedure there is only a small amount of blood outside your body.
During the procedure you are monitored by specialized personnel.
You will be administered an anti-coagulant substance, in order to prevent blood clot during harvesting. You can also pay attention and request a replacement when the substance is almost depleted.
Also, you will be administered calcium, because the anti-coagulant is assimilated by bonding to the calcium molecules in the body and reducing the amount of calcium that is necessary to the organism, during the procedure.
If the administered calcium dose is not enough, you will feel a mild numbness in your lips or nose, in which case you will need to tell the medical staff around you to tune up the dosage.
The apheresisprocedure takes between 3 and 5 hours.
The collection of the stem cells doesn’t require hospitalization, when it’s done using the above procedure, most common case.
Before you leave the harvesting center, some routine tests will be performed on a blood sample taken just before the needles in your arms will be removed.
Regenerating the lost stem cells will be done by your body in a natural way with no side effects or symptoms.
In some very rare cases, the hematologist of the patient that will receive your stem cells could decide, based on the patient’s condition, to harvest the cells directly from the marrow.
The procedure, in these rare cases, will be done, if you agree with this type of harvesting, under general anesthesia in the operating room. Harvesting is done by inserting a needle in one of the body’s large bones. Usually it’s the hip bone.
But I repeat, this procedure is chosen by the doctor only in rare cases, the preferred method is collecting the cells from the peripheral blood stream because it’s less invasive and it requires less recover time.
Some donor cell registries, from various countries, being formed long time ago when the procedure of harvesting stem cells from peripheral blood stream was not a standard, are still called Bone Marrow Donors Registry and the transplant was called bone marrow transplant.
Testing costs are supported by the National Registry of Donors and the costs for stem cell stimulation and harvesting are supported by the Health Ministry or, in special cases, by the patient or his insurance company.
What does finding a compatible stem cell donor means for the patient and his family? A new chance to live!

Although I never wanted to say it, this can happen to anyone, please believe me!
According to international statistics, in countries that have a stem cell registry, many of the cancer patients or any similar diseases, can get cured by doing the stem cell transplant.

Etapa I
Informarea
Mai intai, mergand la centrul de testare, trebuie sa cereti sa fiti informat despre ceea ce presupune ca inregistrarea in Registrul Donatorilor de celule stem hematopoietice, despre principiile donarii de celule stem, despre drepturile pe care le aveti si despre ce etape urmeaza sa parcurgeti. De asemenea, trebuie sa fiti informat cu privire la procedura de colectare a celulelor stem si trebuie sa stiti ca, desi va puteti razgandi oricand, chiar si dupa ce semnati formularul de consimtamant cu privire la inregistrarea in registru, este important sa luati o decizie asumata si responsabila, pentru ca, daca va veti razgandi in momentul in care ati putea fi identificat ca fiind compatibil cu un pacient care are nevoie de un transplant de celule stem sunt sanse mari ca acel pacient sa moara, fiind extrem de dificila gasirea unui donator compatibil.

Etapa II

Completarea formularului de consimtamant si a chestionarului medical
A. Formularul de consimtamant
Formularul de consimtamant cuprinde o rubrica in care trebuie sa completati datele personale si prin semnarea lui
1. va dati consimtamantul pentru:
- A vi se lua probe de sange (ca la orice analiza de sange), pentru a se face tipajul HLA – test de biologie moleculara specific pentru determinarea compatibilitatii intre donator si pacientul care urmeaza sa primeasca celulele (recipient), precum si teste prin care se va determina daca suferiti de vreo boala care sa faca imposibila donarea de celule stem, fie pentru ca pune in pericol viata recipientului, fie pe a dumneavoastra, ca donator
- A fi inscris in Registrul National Roman de Donatori Voluntari Neinruditi de Celule Stem
- A ramane inscris, daca este posibil, in registru, pana la varsta de 60 de ani.
2. Declarati ca sunteti constient de faptul ca va puteti retrage oricand consimtamantul, urmand a fi sters din registru.
3. Consimtiti ca ati fost informat ca:
- Donarea este voluntara, anonima si neremunerata;
- Prelevarea celulelor stem va fi facuta sub indrumarea si supravegherea unui medic hematolog dintr-un centru specializat;
- Nu va este permis sa aflati cine este pacientul care a primit celule stem prelevate de la dumneavoastra, asa cum si datele dumneavoastra sunt confidentiale si pacientul nu poate afla de la cine a primit celulele stem
In mod exceptional, ati putea fi solicitat pe parcursul unei perioade scurte dupa donare, pentru o noua prelevare, de completare, pentru acelasi pacient;
Trebuie sa semnalati centrului de inscriere orice schimbare de adresa, telefon sau orice modifcare semnificativa in starea dumneavoastra de sanatate;
B. Chestionarul medical
Completarea chestionarului medical este menita pentru a determina, impreuna cu testele virologice, starea dumneavoastra de sanatate la momentul inregistrarii in registru, pentru a putea ca, in eventualitatea in care sunteti compatibil cu un pacient, personalul medical sa cunoasca orice afectiune care ar putea sa afecteze procedura de colectare sau pentru a determina eventualele afectiuni ce necesita o gestionare speciala in timpul colectarii de la dumneavoastra sau in timpul infuzarii celulelor catre pacient.
Etapa III
Prelevarea probelor de sange pentru efectuarea tipizarii HLA si a testelor de virologie.
Etapa IV
Colectarea celulelor stem
Daca veti fi identificat ca fiind donator compatibil cu un pacient care are nevoie de transplant de celule stem, ceea ce se intampla foarte rar (sansele de a fi compatibil cu un pacient sunt, statistic, de 1/80 000), unii donatori nefiind niciodata contactati, veti fi contactat, vi se va cere din nou consimtamantul pentru donarea propriu-zisa si veti fi chemat pentru efectuarea unor teste de sange si examinari, care sa determine starea dumneavoastra de sanatate la momentul respectiv.
Daca nu suferiti de vreo afectiune care sa puna in pericol viata si sanatatea dumneavoastra sau a pacientului recipient, se va trece la procedura de stimulare a maduvei. Aceasta se face prin administrarea subcutanata a unor injectii cu o substanta numita factor de stimulare (cel mai des folosit agent de stimulare fiind filgrastim, agent care imita agentul natural de stimulare care exista in organismul uman) care determina maduva sa produca celule stem si determina migrarea celulelor stem in sangele periferic, pentru a se putea face colectarea (denumita afereza).
*** Filgrastimul este folosit pe baza unui protocol standardizat, testarea lui incepand inca din 1966, fiind realizate numeroase studii clinice, folosirea sa fiind aprobata ca protocol standard in SUA, Europa si Japonia inca din 1991.
Aceste injectii vi le puteti administra singuri dupa instruirea specializata, sau poate fi instruita o persoana apropiata pentru a vi le administra. Desigur ca puteti sa mergeti la un centru medical pentru a va fi administrate de personal specializat.
Injectiile sunt administrate pe parcursul a cateva zile, timp in care vi se vor lua probe de sange periodic pentru a determina daca ati ajuns la numarul de celule stem ideal pentru a se trece la afereza.
Unele persoane care primesc factorul de stimulare acuza usoare dureri de oase, muschi, dureri de cap, pentru care medicul va poate prescrie medicamente pentru calmarea durerii (analgezice).
Procedura de colectare, care este asemanatoare cu procedura de donare de sange avand insa anumite particularitati, incepe cu plasarea a cate un ac intr-o vena din fiecare mana si conectarea la aparatul de afereza.
Din una din maini sangele iese si merge in aparatul de afereza unde, prin centrifugare, sunt retinute celulele stem, iar prin acul din cealalta mana, sangele se intoarce in organismul dumneavoastra. Intr-un anumit moment din timpul procedurii este putin sange care sa fie in afara organismului dumneavoastra.
n timpul procedurii sunteti supravegheat de personal specializat.
Se administreaza o substanta anti-coagulanta, pentru a preveni coagularea sangelui in timpul colectarii. Trebuie sa fiti atent ca aceasta substanta sa nu se termine, caz in care perfuzia trebuie inlocuita.
De asemenea, se administreaza calciu, din cauza ca anticoagulantul este asimilat legandu-se de moleculele de calciu din organism, reducand astfel cantitatea de calciu, necesara organismului, pe durata procedurii.
Daca doza de calciu administrata este insuficienta, veti simti o usoara amorteala in buze sau nas, caz in care trebuie anuntat personalul medical care va supravegheaza, pentru a vi se va regla dozajul calciului administrat.
Procedura de colectare poate dura intre 3 si 5 ore.
Colectarea celulelor stem nu necesita internare, atunci cand se face din sangele periferic, adica in majoritatea cazurilor.
Inainte de a pleca din centrul de recoltare, vi se vor face analize de rutina pe o proba de sange luata inainte de a va fi indepartate acele.
Recuperarea celulelor stem colectate se realizeaza in mod natural in cateva zile, in acest timp dumneavoastra neavand nicio problema si niciun simptom.
In cazuri cu totul exceptionale, medicul hematolog al carui pacient va primi celule stem de la dumneavoastra poate decide, in functie de starea pacientului, ca recoltarea celulelor stem sa se faca direct din maduva.
rocedura de colectare se face, in aceste cazuri extrem de rare, daca veti fi de acord cu donarea in aceasta forma, sub anestezie generala in sala de operatie. Prelevarea se va face prin introducerea unui ac in unul din oasele mari, in care exista multa maduva. De regula prelevarea se face din creasta iliaca (oasele soldului - bazinului).
Insa repet, aceasta procedura este aleasa de medic numai in extrem de putine cazuri, in situatii cu totul exceptionale, procedura colectarii celulelor stem din sangele periferic fiind preferata celei a prelevarii celulelor direct din maduva, tocmai datorita faptului ca aceasta din urma este mai invaziva si necesita perioada de recuperare.
De aceea, uneori, registrele de donatori din diferite state, fiind infiintate cu mai mult timp in urma cand procedura colectarii din sangele periferic nu era standardizata, poarta denumirea de registru al donatorilor de maduva, iar transplantul se numea transplant de maduva.
Costurile testelor sunt suportate de Registrul National al Donatorilor, iar cele de stimulare si colectare de Ministerul Sanatatii sau, in cazuri exceptionale, de catre pacient sau de catre societatea la care acesta are asigurare de sanatate.
Ce inseamna pentru pacient si familia lui gasirea unui donator compatibil si primirea celulelor stem de la un donator neinrudit? O noua sansa la viata!

Desi nu am vrut niciodata sa spun asta, se poate intampla oricui, va rog sa ma credeti!
Conform statisticilor internationale, in tarile in care exista un registru al donatorilor de celule stem, foarte multi dintre bolnavii de cancer sau alte afectiuni se vindeca prin transplantul de celule stem.

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