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List of people and details for the testing that will take place on 27.07.2010

July 26th, 2010 admin No comments
 
Thank you very much for your feedback!
 
The following people will be tested tomorrow, TUESDAY, 27.07, 10:30 AM, BUCHAREST, at the Synevo laboratory on 1 Bibescu Voda street , apartment build 4, sector 4 – near Hotel Horoscop, according to the list that was attached to the contract signed today :
 
Dinu Liviu Marian

Dinu Laura Elena

Vlaicu Alexandru

Neagu Victor

Lisievici Andreea

Mihaela Popescu

Andreescu Violeta Margareta

Andreescu Cristina

Adrian Bir Barbuliceanu

Rosca Octavian Nicolae

Paraschiv Carmen

Necula Marius

Moianu Nicoleta Madalina

Anca Tudora Mihaela

Mirela Scaunasu

Irina Senarea

Popaene Daniela

Petra Narcisa

Cruceanu Bogdan

Costea Bogdan

Iulia Craiu

Gabriela Potop Irimia

Costea Angelica

Ilie Andra Roxana

Dinu Vlad Alexandru

Barbulescu Rocsana

Cechi Cristina Valentina

Lucian Oprea

Renata Holmes

Antonio Dumitrescu

Dana Vereanu

Andra Stefanescu

Anamaria Martin

Gogarla Tiberiu Andrei

Mihai Dobos
 
We have to mention that the 35 people limit was imposed on us, but they promised that today they will try to organize another testing session for Wednesday, with a new list of people that are willing to get tested.
 
In the meantime, people from the list above are expected to show up at the specified address on Monday at 10:30 am. Test tubes with each other’s name are already prepared. !
 
You can eat and drink before the test. It won’t affect the results.
For questions and other info, the following people will be at the laboratory to help you:
 
-Cristina Pelteacu, from Synevo
-Alina Popa, a friend of mine
They will make sure everything will be ok.
 
Tomorrow you will have to sign a consent form that says you agree to be tested and 2 test tubes with your blood samples will be collected.
I’m here to answer your questions at any time.
 
For Wednesday, the list is still open, I will get back to you when I’ll have more details.
 
You can’t imagine how much all of this means to me !
Thank you very much!
 
 

We are looking for a stem cell donor that could save my life

July 25th, 2010 admin No comments
As some of you already know, I got to the point when I have to ask again for your help.
Let me inform you about the current situation.
 
I am scheduled for the transplant on 23 august 2010. Because we cannot wait any longer and because my disease cannot be controlled anymore. My sister was tested but the compatibility between us is only 50%, percent that excludes her as a donor, I wouldn’t survive a transplant with her cells.
 
So the doctors, after searching for more than one year through the international stem cell registries, advised me to start looking for a donor on my own, amongst Romanians. It seems that Romanians have better chances of finding a donor in the same geographic area.
 
I will try to explain to you what the testing is all about, but also the harvesting procedure of the stem cells, in case somebody will be found to be a compatible donor.  Because you need to know all the details before I will ask you for your help.
 
The test is named HLA typing (goggle for HLA Typing or Human Leukocyte Antigen)
 
When the testing should take place:Tuesday , 27th of july 2010, 10:30am
 
Why  now?Because the results are ready in two weeks (that’s the minimum technical required time with no administrative delays so I cannot have it sooner than 2 weeks). Only this way everything can be organized so that the blood samples will leave to the laboratory in Germany with the first and only specialized transport.
 
Why the hurry? Because on the  23rd of august I have to go through the transplant procedure, with or without an adult donor. I have already stem cells taken from 2 newborns, from the international stem cell database = 70000 E
 
Why is that not that best solution anymore?  Because in the case of a progressive disease (like mine), there are chances that after the transplant, when the immune system  is completely gone, I would need chemotherapy in order to stop the disease, in order to allow the stem cells to go towards the bone marrow, establish a base over there and eliminate  the cancer. The difference between stem cells taken from newborns and those taken from adults is that the adult ones are doing their job faster and they can bring back my immune system 2 weeks sooner. Assumed risk while doing the procedure with newborn stem cells – great, of decease….
 
 
Stage I
 
The name of the test is HLA typing . It’s a simple blood test procedure from the donor’s point of view. The complicated part is the one taking place in the laboratory because it’s a DNA analysis. It’s a test that is performed for any kind of transplant (organs, tissue or cells), in order to determine the level of compatibility between the donor and the patient.
For those who wish to find out more details about this test :http://www.surgeryencyclopedia.com/Fi-La/Human-Leukocyte-Antigen-Test.html.
How is it done? They collect two blood test tubes. Same as for any blood tests. Nothing special. It’s just a sting.
 
After the blood samples are taken, from the people that want to help me, they will be sent for analysis at a laboratory in Germany that co-operates with the Synevo laboratories – the only ones I could find in Romania, that were able to do this kind of testing.
 
They will do a HLA A, B and DR typing, at 1140 E for each tested person. The costs are supported entirely by my family. 
 
Anyone can be tested , no matter of the blood type. Chances to find a compatible donor are extremely low, 1/80 000 for non-related donors, but if I want to save my life I have to try this, no matter the costs.
 
We decided to do the tests in these laboratories after many failed attempts to do something similar at the Romanian Stem Cell Registry that was formed last year. Becauseit’s not functional, they don’t have funds, they don’t have the necessary substances for the test, they don’t have… Please believe me that I’ve done everything that was possible. They promised they will try to do something. They don’t know for sure what.  And most important when. And because the results are ready in two weeks  the minimum technical required time with no administrative delays, and because we know how our country is , offering us no chance , I can’t afford to wait for an answer from the specialists that are on holidays right now.  So I will have to do it on my own.
 
The registry from Vienna already offered me a series of free tests, Blue Air and Bostina si asociatiiLaw Office help me organize the plane departures from Romania .Wehave already started the testing in Vienna. Many people are expressing their wish to help me and are asking for details . Useless to say how frustrating it is to see  that you are getting help outside the country border, from strangers, rather than the home country. Although they intensively mediatize any action that has been started and not finalized . I know that many of you will say “ we have our own registry, I saw it on TV, many people from the press and our ministry Bazac were tested….”. Some of you even went there to get tested for the registration protocol with the hope that you could save somebody’s life. You know what happened with your blood? They told me it is refrigerated in the location where the test took place and they are waiting to get money allocated so they would be able to do the actual test.  So , with all the good will of everyone that got registered , the blood is not yet tested, therefore   a search in our registry, which was denied anyway or at least delayed until the person responsible for that will get back from holidays, would be useless.  And in order to find that out, to realize you need to find other ways to save your life, you have to run to different places, make lots of phone calls and pull strings for couple of weeks. I contacted every center that was supposed to be affiliated to the Registry, I’ve tried everything.
 
The only thing left for me to do is taking care of the testing myself with all the expenses that come with that, the best way I can. Only one laboratory in Romania . Bottom line : I will sign the contract with Synevo on Monday morning ; on Tuesday , 27.07.2010 everyone who wants to help will be tested .
 
You cannot be tested if :
 
- You are a minor
- You had B or C hepatitis
-You currently have A hepatitis
- You have HIV/Aids
- You have any sexually transmitted disease
 
For everyone else, the only thing required is the desire to save my life. It will cost you only 1 hour of your time, a sting and the strong commitment that if I’ll be lucky enough to be compatible with any of you, you will agree to continue with stem cell donating procedure, that I will describe in the details below, with photos taken when they’ve harvested my own stem cells for my first transplant that extended my life. If you need any more details, you can contact me anytime. It’s important to keep in mind that if we get to donating stage , this will take place in Vienna, in one of the best hospitals in Europe, where I did the transplant myself, in very good conditions, costs being supported by my family and the help I received from you.  I do trust them and I would never ask anyone to do any medical procedure in Romania, based on my personal experience.
 
About the stem cells harvesting procedure
 
Trip to Vienna and accommodation on my expense.
 
A stimulation procedure will begin using an agent called Filgrastim. This substance will be administered using injections during a couple of days until there are enough stem cells to be harvested. . I did the shots myself. The shots are not painful…just plain shots.
This stimulation also makes the stem cells migrate to the peripheral blood stream, making this procedure much easier and less riskier compared to older procedures where the cells where collected directly from the marrow by performing  a surgery.
 
During the stimulation procedure, at certain intervals, blood samples will be taken from you , in order to determine if there are enough stem cells in order for the apheresis to start. When the number is optimal , the stimulation procedure stops and the apheresis  starts.
 
Collecting the stem cells is done by having two needles inserted in a vein of each arm . Those are connected to a collecting device, which uses acentrifuge,that collects and counts the stem cells. Blood goes back into the system through the other needle.
 
The procedure is not painful at all, just not very comfortable because it takes a few hours and during that time the donor has to stand still until there are enough stem cells collected.
 
If we manage to get to the phase where the collecting of the cells would be possible, which I hope we will, the risks are minimum, same as having an  infusion.
 
You are monitored during the whole procedure, and you will be administered calcium to replace the one you lose while having the anticoagulation substance in your blood ( needed for obvious reasons  - not to have your blood clotted in the collecting device)
 
I  had no problems during this procedure.
 
After collecting the cells you will be sent home . Your cells will be given to me and they will save my life. You won’t miss them because the ones you donate are fresh cells and you will still have the adult cells to protect you. And stem cells regenerate after only a  few days.
 
This procedure is frequently done in all the civilized countries, there are impressive statistics regarding how many human lives were saved per year using the stem cell transplant. And the risks of the procedure are not greater than those from a regular injection or infusion.
 
I hope I will be one of those saved by this type of transplant, I still believe in my chance and that’s why I’m asking for your help.
 
So, I NEED A DONOR!
 
If you want to try save my life, and you are determined to go all the way with the procedure, please contact me at dinucristina8223@yahoo.com as soon as possible.
 
I need  list of persons ( name , address, personal numeric code, phone number, email – in order for them to label the test tubes and in order to be able to contact you), until early morning on Monday.
 
I repeat, tests are done on Monday, 27.07.2010, 10:30 am, Bucharest. The exact location will be announced on the blog on Monday morning. (It will be somewhere around PiataUnirii)
 
I can also get help from people who already took this test and have their results.
 
Also any kind of sponsorship is helpful!
 
To those in need,I’m posting my sister’s test results. She’s willing to save a life anytime.
 
Thank you!