Dore's appt

Dore ,
  on good test results , Keep up the good work  , you're doing well ...

Best REgards
Take Care
Umair

Dear All,

I recently post something about making blood from stem cells. I can not find it and I don't have more time to do more search to find where I have post it.

Last night it was picked up by Dutch journalists and it was on teletext. Those daily awake bosses don't seemed too smart to understand what it meant or to call someone to explain it. It just disaappeared for the news!

Anyway, I did not understand the benefit of it too so I asked my father. When he heard I could only hear his voice and he sounded so happy.

If they can make blood from stem cells, they would be able in the future to do that also with your own stem cells.
If they succeed there comes a time that they can make those blood cells better than the ones your body makes....

In other words: It's a very good development!!!

Dore ,
here's your post's link, regarding stem cell .
" New Research Sheds Light On How Stem Cells Turn Into Blood Cells "
http://www.thalassemiapatientsandfriends.com/index.php?topic=2697.0

yeah its a realy good Development , No doubt ...

Umair

Hi All,

It doesn't seemed that my last blood transfusion has worked for me. I want to sleep day and night. My eyes falling to shut when I read longer than 10minutes. So studying is a very hard job. Nothing stays in my head. It might be a combination of low hgb and the stress of the last weeks. Who knows?
Anyway, today I went only to Amsterdam do give them blood for the blood transfusion at monday. I am a bit angry at them, because they only give me papers for hgb and hemacriet (in English?). Why not a completely blood work? Yes, I am curious about lymfocyten because they were high the last time. I want to see what happend to my trombo's and above all what is my RDW? 

I went again through my bloodwork of the past 2 years. I came across something strange what happend between oct 2007 and march 2008. I haven't noticed that before because my father was very ill at that time. I will give you more information about so soon as that is over. My doctor ordered strange blood tests and I never saw the results - they were blocked for me.

I will give an example:
What is monocyt? Mine were pretty high in that time. What does that mean? (Doctor never did this test again, but the doc let them measure for 5 months long. Why?)

 

Have a good weekend,

Dore
p.s. this afternoon I lost my sight in my right eye for almost an hour. I could not read at all. I was pretty scared, but it seems to be OK now. Owh, my right eye is my good eye. My left is bad and is also a lazy eye -that's how they call it.

Dore

Here is a definition for monocytes
http://www.medterms.com/script/main/art.asp?articlekey=4426


As for your eye sight, is this the first time that happened to you, do you have any idea what is the cause for this, did you consult with the doctor???

Please take care and update us

manal

Dore,

Did the sight in your right eye go black - or was it like a light flash which blocked a visual field?  The later would indicate low blood pressure, the first one would need more investigation.  Either way, you should consult your doc immediately.

Sharmin

Dore,
Best of Luck for all of your treatments , and please Take Good Care of your self ...

Best Regards
Take Care
Umair

no, I did not consult a doctor. And also not the docs in my family. I keep waiting untill it went back to normal.

It's like a mist. I have had it more, but that was years back.

Thank you Sharmin, I got those light flashes daily. I never knew what they were. They are very annoying. No, thanks it did not went black.


 

Hi,

I have had my last tx at monday. At friday i had a hgb of 5.5 mmol (x1.8 = gl/dl). So I couldnt have wait any longer. I have no idea what is causing this fast hemolysis. An hour after i was home the pain came, but it was gone when i woke up in the morning
I did make it to the exam at tuesday, but you dont want to know how. The pain visit me in the train. I had panadol, but no water. So i had to wait atleast 40min. Since then I have had backpain and chestpain. My chest pain has left me a bit. I dont feel it all the time, only when i take a very deep breathe. My back pain is still here and my joints are hurting like i dont know what. I am also very sleepy. I am glad it is really blue and sunny (18 degree celcius). So I sleep a lot outside (in the sleepbag). Yesterday I read out 'Thanks for the memories' by C. Ahern (Zaini). But all this illness does not let me studying, so I have decided to not make the exam of European Law at friday. I hope I feel better at wednesday 8th April so that I can attend the Dutch Day of Rare Disease. I have convinced one other pk def. patient that she should go, so I really want to meet her. She is actually the lady of 36yr who want a bmt. She has been told she is too old and her sister can not be her match

To be honest, i am very thankfull that I have a working Iphone now. Nevertheless I am going to put me off the notifications. I want to rest so much as possible.

Next week are there exams as well, but I dont have one. So I am gonna try to (do) rest (sleep), read and recreation (enjoy).

Owh, the 10th is my birthday, the 13th i celebrate my bday for family and the 16th I got an other blood transfusion. Dont be suprised as you dont see me posting during that weekend. I have decided to stop playing the hero and if they decided i should stay in the hospital because of the pain, I will do that.

Take all good care of yourself and your love ones,

Dore
p.s. tomorrow 20 degree, saturday 18 degree and sunday only 14 So my advice: enjoy the weather (if possible).

Dear Dore,

Please have a chest xray if you are having pain and tightness in your chest, my dear.  I hope that you feel better really soon.  I am glad that you have decided to stay in the hospital if you have pain.  We will miss you over the weekend. 

I wish you the best with all of your exams, you are incredible - everything that you do. 

I am very excited about your birthday - you will have to tell us all about it!

Sharmin

hi, i read the leaflet of Exjade yet. I think I will take one pill of anti allergic medication tomorrow. Only to see of the thing will disappear. I feel very nauseau also, lots of hunger too (lol) and my dad talked about exjade to me. I think he already thought what I think now. at 14th april i have to go to the hospital to prepare for the transfusion. i will asked for an other full panel of exjade test and ferritin. if the ferritin is under the 1000 i will reduce the amount of it.

Sharmin, that is not possible. I am looking forward to the summer to have the t2* done.  And yes, I will tell you all about my birthday. Hahaha, i really must thinking what kind of present I want. My parents and some family asked me about it. Books, books, books lol. (i need almost an other bookshelve LOL)

Hi Dore,
i m sorry to hear to wat you've been through a few days ago ...  i m back to site after a whole day break to PC , (bcoze my PC waas playing a joke with me yyeah  this time it was a little difficult prob... it wasn't booting the cd finally, i re-installed and fixxed the prob .. anyways back to the topic.... ), soo i m unable to read all and long posts , as i m a little tired as well ( yeah, it was Tx day , but a good day ).... soo ...

Best Regards
Take Care
Umair

Hi Dore,
i m sorry to hear to wat you've been through a few days ago ...  i m back to site after a whole day break to PC , (bcoze my PC waas playing a joke with me yyeah  this time it was a little difficult prob... it wasn't booting the cd finally, i re-installed and fixxed the prob .. anyways back to the topic.... ), soo i m unable to read all and long posts , as i m a little tired as well ( yeah, it was Tx day , but a good day ).... soo ...

Best Regards
Take Care
Umair

I am glad your tx went fine. Since 7 months (a guess) I am knock out of tx. I keep asking this question to everyone, but the people I spoke to are all saying they feel great afterwards. 

take care, Dore

Thanx Dore

To make a long story short: I did bloodwork in local hospital today: hgb 5.6 (7.5-10.0) & leudocyte? 25.5 (<10) remember i had a tx last monday! That bloodwork was done on friday before; hgb 5.5. Our conclusion is that i am fighting a virus. We called hospital in A'dam: i"ll meet my doc at friday.Indeed my birthday. If I fell well at end of week i will canceled that meeting. X