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Change of plans, details and words of appreciation

I will start with the change of plans. Last week I had to do all the medical examinations required before the transplant, except for the PET-CT , which shows how my disease is behaving since  the last checkup of this kind until now,  after the last chemotherapy session.
 
Most of the results are perfect, there are no visible signs that the treatment from the last two years (2 years on 29 august , damn it !) put its toll on any internal organs. My heart looks exceptional and it functions even better then it looks.
They also performed a CT examination in order to plan the total body irradiation (TBI), that I will have to receive before the transplant, combined with high dose of chemotherapy, in order to destroy and remove my bone marrow and to make room for the new cells that will save my life.
 
I don’t know yet what kind of cells they will use. The stem cells that were harvested from umbilical cord, cells that are already stored for me, which, as I told you before, are not the best option for me, or the cells that could be harvested from one of you.
 
Until today the situation stands as follows:
 
- We have all the results from Vienna. None of the 44 persons that were tested are a match.
- Synevo tested 79 persons. I have 55 results. None compatible.
- At the Hematologic Institute in Bucharest 148 persons were tested. I have 51 results. Nothing.
 
Tests will continue at the Institute.
 
The testing continues because at the meeting with the transplant team coordinator they told me my hospitalization was delayed until the  2nd of September.  Right on my birthday! When he saw me laughing, he asked me, bedazzled why, , and I told him. He offered to move the day further in the calendar, but I insisted to get in as scheduled because it has to be a sign, although I have never believed in such things.
 
Where do I intend to get with this? Considering the fact that now I have earned another week and a half  and because the tests at the Institute, being done using a different method compared to Synevo, are showing after only a couple of days per test, the tests can continue for me till Friday 27.08.2010 . So I’m still waiting for your emails.
Also, please, resend this message to friends, colleagues, relatives, make it public on blogs or sites that you might be administering . If they won’t help me they will help for sure some other desperate peole in need of  stem cell transplant.
 
After that date, we will start a large campaign, together with the Health Ministry and the National Stem Cell Donor Registry, in order to succeed puting the registry on its feet, so that no other person will have to go through what I have experienced.  At least regarding the part of donor  search.
 
Why can’t they search the International Registry, like I did? It’s simple:
 
- The costs are between 30 000 and 50 000 euros, depending on the transplant center and the additional tests needed during the search process.
- the search is performed through the transplant center  where the procedure will take place and it’s useless to mention that  you won’t get into the transplant waiting list unless you were treated for a while in their medical system or unless you have your file approved by the Health Ministry. 
- an eloquent  example:  I don’t have strange genes but strange combinations between the genes. This was told by specialists, based on international statistics, statistics that failed to include a representative number of Romanians, because we are not tested, nor registered in any registry,etc.
But, surprise! From the first 15 results received from Synevo , 2 persons showed up with one of my “ strange gene combinations”. So the statistics don’t fully apply to us. Which means we have chances of finding a donor among us.  That means we can save eachother’s lives.
Also, in general, patients with cancer don’t have my luck to function during treatment and they also don’t have the luck that I had with you.  Because of that, unfortunately, many Romanians who need a donor  - no matter how dark it sounds, this really happens – die running between the hospital, for the terrible specific treatment, the institutions allowed to offer financing in order to get treated outside the country and NGOs to help them get some money through fund raising campaigns, as an alternative solution. 
Although I am quite a skeptic, although I have moments when I think that nothing can be changed here, I strongly believe that we can do something so we won’t be condemned just because we are born and live in Romania.
With the risk of repeating myself, I want to thank everybody that went through the testing phase because even if some of you were afraid of the needle sting you understood how important your gesture is and you acted accordingly. You have my full gratitude for that!
 
I will repeat below all the informations you need in order to be able to decide, fully informed, if you want to do the testing or not, to get registered as a donor in the Registry, and maybe to SAVE A LIFE.
 
Although many of us were disappointed by our medical system, my opinion is that, with proper information, we can manage this situation and besides that, why not, try to change something when someone offers a helping hand? Why not do something? Why won’t we try to invest a small amount of trust in some good people that I personally got to know, when this minimal trust can save someone of us s life?. Because, believe me, this can happen to anyone!
 
We can do something and we have to start somewherein order to quote someone dear  to me !
 
I’m doing everything in my power, I can reassure you of that, but I need your help! I know that this will sound like a motivational speech, but it is very sincere: ONLY TOGETHER WE CAN DO THIS !
 
There are already 140 registered people in the Romanian Stem Cells Donor Registry (some of the people that know me had done the testing only for my benefit, refusing to get registered in the registry), and if you add my sister, 141. We will take the signed forms and her test results to the Hematologic Institute in order to register her into the registry by the end of this week.  We’ve reached this number in only 2 weeks, considering the fact that the institute has the theoretically testing limit of 15 people per day, during 2 hours per day, from Monday to Friday.
Considering this, I want to call out for any specialized medical personnel that wants to help, as a volunteer, to draw blood samples from anyone that is interested in joining the registry, in order to increase the number of people tested per day.  For this I’m waiting for your e-mails. Specific hours and days when you could help will be discussed.  Nothing is established. ?????
 
We have the full support of the Austrian Stem Cells Donor Registry. They want to help us have our own functional registry, interconnected with international organisations and accredited accordingly to international standards. But for this we need to start it up!
 
Tomorrow I have a new appointment, this time with the director of the Austrian registry.
 
If you have any ideas or if you are willing to help as a volunteer, please contact me !
 
I will stop here and I will paste some useful information from the last blog post below, so you can track the info easier :
 
HLA Test are ongoing! Each day, Monday to Friday , for now only between 12:00 and 14:00 , in Bucharest, at
 
The National Institute of Transfusional Hematology  “Prof DR. C. T. Nicolau” – National HLA laboratory – EFI certified center
 
On 2-8 C. Caracas Street, sector 1 , floor 4, room 13, under the coordination of doctor Dutescu Irina Monica .
 
As I said before, tests are done only with the registration in the Romanian Stem Cells Donor Registry.
 
You won’t be able to register the registry if:-
 
- You had hepatitis B or C
- You have hepatitis A now. If you had it in the past and it is cured, there is no problem.
- You have HIV/AIDS
- You have syphilis or any other sexually transmitted disease 
- You have  recently had an accident or underwent a surgery that affected your flat bones(hips, sternum or spine) because damages to those types of bones can affect the bone marrow, where the stem cells are produced. 
 
Some of the autoimmune diseases can represent an impediment for the testing and for joining the registry.
 
Details about the testing procedure and the stem cell harvesting, in case you are compatible, chances that this will happen are 1/80 000, you will find here : http://cristinalilianadinu.blogspot.com/2010/07/se-cauta-donator-de-celule-stem-pentru.html
 
A map of the area where the testing is taking place you can find here: http://3.bp.blogspot.com/_8xtPL2Gat74/TFVphfWWTcI/AAAAAAAAAHY/9YwwZzJp9oo/s1600/harta.png
 
In order to read how the search started and why it’s so necessary, follow the link below: http://cristinalilianadinu.blogspot.com/2010/07/se-cauta-donator-de-celule-stem-pentru.html
 
The accounts for receiving donations or sponsorships, in order to supplement the limited stocks of reagents, needed for the testing, are mentioned here : http://cristinalilianadinu.blogspot.com/p/cum-ma-puteti-ajuta.html
 
You are allowed to eat and drink before the test.
Blood group and RH factor do not have any relevance.
 
It is necessary that those among you that wish to help, bybeing tested and, in the happy case that you will prove to be compatible, to donate the stem cells, will send to my email address the necessary infos ( name, CNP – identification number, email address, phone number), and also mention the days when you will be able to show up for the test. We will centralize all the data received and we will send each one of you a confirmation SMS.
 
You also need to understand that in order to get tested you have to agree to be registered into the National Stem Cell Donor Registry.
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