Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: Danielle on February 11, 2006, 05:57:10 AM

Title: Poll: Blood Transfusions
Post by: Danielle on February 11, 2006, 05:57:10 AM: All votes are anonymous, so if you would like to add something to your vote, please reply below. :biggrin

I go every 2 weeks. :)
Title: Re: Poll: Blood Transfusions
Post by: Ayesha on February 11, 2006, 06:04:01 PM: Every 3 weeks... :)
Title: Re: Poll: Blood Transfusions
Post by: Richard on February 12, 2006, 03:01:13 AM: You should of make a section for the people that don't have Thal. So we could vote... i am also interested to see who gets what.. :huh
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 03:43:58 AM: Quote from: Richard on February 12, 2006, 03:01:13 AM
You should of make a section for the people that don't have Thal. So we could vote... i am also interested to see who gets what.. :huh

People without Thal don't usually get blood transfusions. :huh

:rotfl
Title: Re: Poll: Blood Transfusions
Post by: Richard on February 12, 2006, 06:30:44 AM: Quote from: Danielle on February 12, 2006, 03:43:58 AM
People without Thal don't usually get blood transfusions. :huh

:rotfl

Ugh.:mad

I meant make a poll option for the people that don't have thal. So we can vote up there and see the results. I can't see the results unless i vote. Understand?? :huh
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 06:34:25 AM: Ohhh! I'll turn that on then (where you can see the results if you don't vote). Sorry. :(
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 06:36:38 AM: Ok, now you should be able to see it. :biggrin
Title: Re: Poll: Blood Transfusions
Post by: Richard on February 12, 2006, 07:21:24 AM: I still don't see it... can we get an admin that knows what she is doing please... :mad :mad :D jk
Title: Re: Poll: Blood Transfusions
Post by: Richard on February 12, 2006, 07:22:04 AM: I see it now.. :wink
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 07:54:09 AM: Quote from: Richard on February 12, 2006, 07:22:04 AM
I see it now.. :wink

Nice, blame me for your own stupidity! I told you I fixed it! :mad

:rotfl
Title: Re: Poll: Blood Transfusions
Post by: Eponine on February 12, 2006, 01:34:04 PM: I go every month, but at the way things are going, I might have to go more often. My pre-transfusion Hb, at it's best is about 9. I know it's probably way lower than any of you would accept. I feel find at 9 so I let it be.
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 01:41:20 PM: Actually, I would love to have a 9 for my pretransfusion HgB. Except for recently, I had been going in with a 7 or 8 HbG after only 2 weeks, and I was getting two units each time. I don't know what's going on with my body recently, but my HbG has been higher, but I was in the 7's and 8's for years. I don't think a 9 is bad at all, especially after a whole month. That's awesome! :biggrin

Are you a Major, Eponine?
Title: Re: Poll: Blood Transfusions
Post by: Poirot on February 12, 2006, 01:45:13 PM: Quote from: Eponine on February 12, 2006, 01:34:04 PM
My pre-transfusion Hb, at it's best is about 9. I know it's probably way lower than any of you would accept. I feel find at 9 so I let it be.

Not necessarily, :biggrin mine usually hovers between 8 and 9.5, too .... but, it is trade-off between the extra iron and some tiredness.
It's also got to do with body weight and I have put on some weight in the last few years, which has increased my "consumption" of blood. But, so far, I have resisted my doctor's advice of increasing the transfusion regime ... I go abt once in 15 days.
Title: Re: Poll: Blood Transfusions
Post by: Poirot on February 12, 2006, 01:50:37 PM: Quote from: Danielle on February 12, 2006, 01:41:20 PM
I don't know what's going on with my body recently, but my HbG has been higher, but I was in the 7's and 8's for years.

Do you have your spleen? If yes, is it enlarged? If yes, then you have probable cause right out there. The spleen is eating up your RBCs.
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 01:56:28 PM: Yes, I still have my spleen, and its enlarged. However, the past few months, my HgB has been higher than normal, which is odd to me. I haven't had a pre-transfusion HgB of 10.5 since I was in my teens, and that is what I went in with last week. :huh

I have been seeing doctors about my spleen, and we've been talking about removing it, but I want to make sure it's really necessary before its done. :sadyup
Title: Re: Poll: Blood Transfusions
Post by: Poirot on February 12, 2006, 02:08:30 PM: Quote from: Danielle on February 12, 2006, 01:56:28 PM
I have been seeing doctors about my spleen, and we've been talking about removing it, but I want to make sure it's really necessary before its done. :sadyup

Yeah, it is a bigger surgery than having your gall bladder removed (although, your story was a pretty fearful one) - and, recuperation takes a while. But, if it is enlarged, then taking it out is probably the best decision.

The other thing that having an enlarged spleen does, quite weirdly, is that it makes your bones thinner and weaker ... this is because the marrow tries to produce more cells, as the spleen keeps clearing them out. Quite a vicious cycle :(

You could look at a hyper-transfusion regime to reduce the spleen ... ie pre-transfusion HB of at least 11-12 gms. But, then you have to deal with the iron. :(

Hobson's choice .....
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 02:52:21 PM: Yeah, it's a hard decision. I already have Osteoporosis, so I don't need my bones getting any thinner than they already are. :(

I don't mind the surgery itself, because I've had plenty of them. I've had two major abdominal surgeries already, so one more won't be a big deal to me (besides the pain lol). :dunno

I actually wish I could find out how well I can live without it. Does anyone know if the life expectancy of a Thal is the same when they don't have their spleen? Is it any shorter? You can become septic very quickly without a spleen, and I'm very worried about that. :sadyup

Does anyone know how "big" is big, in centimeters? My spleen is 14cm, and I've been told that's pretty big. However, I've also been told that it's not big enough to need removal. I'm so confused. :huh

Someone enlighten me! :wah
Title: Re: Poll: Blood Transfusions
Post by: Poirot on February 12, 2006, 03:02:00 PM: Quote from: Danielle on February 12, 2006, 02:52:21 PM
Yeah, it's a hard decision. I already have Osteoporosis, so I don't need my bones getting any thinner than they already are. :(
I don't mind the surgery itself, because I've had plenty of them. I've had two major abdominal surgeries already, so one more won't be a big deal to me (besides the pain lol). :dunno
I actually wish I could find out how well I can live without it. Does anyone know if the life expectancy of a Thal is the same when they don't have their spleen? Is it any shorter? You can become septic very quickly without a spleen, and I'm very worried about that. :sadyup
Does anyone know how "big" is big, in centimeters? My spleen is 14cm, and I've been told that's pretty big. However, I've also been told that it's not big enough to need removal. I'm so confused. :huh
Someone enlighten me! :wah

You may want to take some calcium supplements if you already have some problems with your bones.

You don't mind the surgery?? Apart from the pain?? Excuse me for my ignorance, but I thought that was the big deal about surgery. The pain and maybe, the post-surgery complications ??? :biggrin

I had my spleen taken out abt 18 yrs ago ... so have lived half my life without one. Not a very big deal, if you ask me :biggrin
Re: infections, you take the pneumococcal (I think) vaccine before you undergo surgery, and then take prophylactic pennicillin life long. Easy peasy .... :biggrin

But seriously, I think I have felt much better after my spleen was out - my quality of life definitely improved (higher energy levels, no worries about getting a spleen rupture from an accident, less of being a vampire!)

14cms is big - normal is abt 3-6cms, if I remember correctly. But, mine was even bigger when it was taken out.

Don't know if that helps ???
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 03:43:23 PM: lol Nooo, I just meant that I wasn't afraid of the surgery. I've had so many surgeries, that the only thing I'm worried about is the pain afterward, because pain meds don't work on me very well. It takes enough medicine to kill a horse to ease any kind of pain in me, and half the time, they need to use very strong doses of Fentanyl, Morphine, and Dilaudid to take the edge off. And abdominal surgeries are the worst. You can't do anything without being in pain. You cough, sneeze, laugh, breathe, and it hurts so bad. :(

As for the calcium supplements, I've been taking them. I've tried taking Fosamax, but it caused severe musculoskeletal pain, and I couldn't walk for a week. :sadno

I'm glad you are doing fine now without your spleen. I wish that I was able to have a guarantee that I wouldn't need as much blood anymore after getting it taken out, because if I'm going to get just as much blood, I'd rather keep it. The only thing that bothers me is that I get a very uncomfortable feeling after I eat on that side, because my stomach pushes up against it. :(

Thanks, Poirot. Your info was helpful. :)
Title: Re: Poll: Blood Transfusions
Post by: Prince on February 12, 2006, 03:51:29 PM: I go for BT once a month. Earlier it used to be 20 days (About 2 yrs ago)
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 03:59:31 PM: Hi Prince! :biggrin Can you tell us what your pre-transfusion hemoglobin usually is?
Title: Re: Poll: Blood Transfusions
Post by: michelle0630 on February 12, 2006, 05:11:15 PM: i go every week right now 18 weeks pregnant!
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 05:13:26 PM: Hi Michelle! I'm so glad you joined! :yahoo
Title: Re: Poll: Blood Transfusions
Post by: Poirot on February 12, 2006, 05:13:57 PM: Quote from: michelle0630 on February 12, 2006, 05:11:15 PM
i go every week right now 18 weeks pregnant!

Congratulations! :cheer
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 05:16:59 PM: Quote from: Poirot on February 12, 2006, 05:13:57 PM
Congratulations! :cheer

Isn't it great?! And this is her SECOND one! How awesome is that? :biggrin

I remember when us female Thals were told we'd never have children. :rolleyes
Title: Re: Poll: Blood Transfusions
Post by: Poirot on February 12, 2006, 05:19:08 PM: Quote from: Danielle on February 12, 2006, 05:16:59 PM
Isn't it great?! And this is her SECOND one! How awesome is that? :biggrin

Pretty awesome :clap

How old is the first kid?
Title: Re: Poll: Blood Transfusions
Post by: Poirot on February 12, 2006, 05:20:54 PM: Quote from: Poirot on February 12, 2006, 05:19:08 PM
How old is the first kid?

I should put this in the other section about coping with Thal. In the past, any reference to "kid" meant us .... the thal kid ... now, it refers to our kids!!!

:cheer
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 12, 2006, 05:24:57 PM: Quote from: Poirot on February 12, 2006, 05:19:08 PM
Pretty awesome :clap
How old is the first kid?

I think he's going to be 5 soon. :huh Correct me if I'm wrong, Michelle.

And yes, I think it's pretty cool that the references to kids can actually be our (the Thal's) kids, instead of us now. :biggrin
Title: Re: Poll: Blood Transfusions
Post by: michelle0630 on February 12, 2006, 05:43:43 PM: yes he will be in five on july 17 and im due with my second july 18.
Title: desforal during pregnancy
Post by: michelle0630 on February 13, 2006, 01:38:56 AM: is it safe to use desforal during pregnancy? I didnt use with my first son
Title: Re: Poll: Blood Transfusions
Post by: Richard on February 13, 2006, 02:06:08 AM: Congrats on the baby Michelle. Hope everything turns out great!! :clap
Title: Re: Poll: Blood Transfusions
Post by: Tarique Qureshi on February 16, 2006, 05:19:49 PM: wish you a healthy and cute baby.
Title: Re: Poll: Blood Transfusions
Post by: baal on February 17, 2006, 04:35:16 PM: i am in same pos. as dani...
my spleen is xxl-large and the rest off the disstruction
work is doing cause off all the anti-killers in the unetis
(anti wra..anti kell and so one) but this must be normal after 2000
of bloodtransfusions...
however i hab a hb-level of 6-7 and go 2weekly for it.
sometimes i get 3units..but never helps a lot.
before 10-15 years thinks are better....
10-12 hb...4-5 weeks period..
panos
Title: Re: Poll: Blood Transfusions
Post by: betathalpenpal on February 20, 2006, 02:08:55 AM: I've had so many surgeries, that the only thing I'm worried about is the pain afterward, because pain meds don't work on me very well. It takes enough medicine to kill a horse to ease any kind of pain in me, and half the time, they need to use very strong doses of Fentanyl, Morphine, and Dilaudid to take the edge off. And abdominal surgeries are the worst. You can't do anything without being in pain. You cough, sneeze, laugh, breathe, and it hurts so bad. :(

Danielle:

I am a beta thal intermedia. I had my spleen removed when I was sixteen. I have had six severe infections in the past thiry-five years. I have briefly read that there are ways to limit/block off the spleen without removing it. If it could be saved, I think that I would find out. However, I did have hypersplenism and my HgB was 5. - 6. before they removed my spleen and after it increased to 8.2 - 8.6. The best measured day that I have ever had is 9.3. I don't and have not had transfusions except three times when I was critically ill. I don't know where the trade off is because there are plus and minuses on both sides. If you leave it, it will mass produce and destroy RBCs and if you remove it you risk the possibilities of infections.

I also have had my gall bladder and appendix removed when I was 30. I badly injured my leg in a motorcyle accident and about ten years I broke my ankle in a farming accident.

I have had the same issues with inadequate pain medications. The doctors look at like your crazy. For me, morphine is like taking baby asprin. It doesn't do much. I think Dilaudid is a step above Morphine and it does takes the edge off for me. On a good day it lasts about two hours. On my last visit to the hospital they rotated Didaudid with Tylenol 3 every two hours. This is the best that it ever worked.

Have you ever heard of other beta thals having the same problems with paid meds? Also, if you don't mind sharing, who is your hematologist?

Thanks to Andy and you for your hard work keeping tihs site going.

Barry
Title: Re: Poll: Blood Transfusions
Post by: Danielle on February 22, 2006, 06:32:01 AM: Hi, Barry! Thanks for the info. I really appreciate it. :biggrin

I am trying to hold on to my spleen for as long as I can. That's why I keep stalling. :(

As for the pain meds, I have heard many Thals say that they have a tolerance for them. It might have to do with the fact that our liver is so used to medication, from being on Desferal and other things practically our whole life, so it doesn't metabolize meds the way it should. The amount of Morphine/Dilaudid/Fentanyl they need to give me to take even a small amount of pain away is enough to kill a horse. :sadyup

My Hematologist here in New York is Dr. Richard Ancona.
Title: Re: Poll: Blood Transfusions
Post by: Prince on February 23, 2006, 06:22:48 PM: I go once a month
Title: Re: Poll: Blood Transfusions
Post by: joanne on February 25, 2006, 10:00:13 PM: My spleen is 20 cm
My HB is never higher than 9.8
and I dont get transfusions
Im 37 and had my son 15 months ago
I was very sick in pregnancy my hb was 5.0 :wah
Title: Re: Poll: Blood Transfusions
Post by: Bharat on February 28, 2006, 11:16:43 PM: Hi Guys

My wife is Thal Intermedia. Danielle, her spleen was 17cm. She had the surgery in India. Recovered very well, BUT, it did not help her Hb level. :(. Doctors said there are rare exceptions when it does not help the Hb level. Surgery was done through traditional open method. Anyone looking to have a splenectomy should try to have it done laproscopy. Also, the longer you wait, and the larger the spleen the less chances of having the spleen removed through laproscopy.

Its been five years since she had the splenectomy done and several blood transfusions in 5 years. She is now in the USA. Daily doses of antibiotics and folic acid and fosomax. No major infections. Doctors in USA disagree with daily doses of antibiotics. Her doctor in the USA is from England and states that doctors from both countries have their reasons but he advised to continue daily dose of antibiotics.

Nice to see Thal moms posting their experiences. We are thinking of having a child and this site offers us hope. . Doctors have told us it will be a high risk pregnancy. I do not have the thal trait.
We are trying Wheatgrass and will keep this site posted of the results. Her Ferretin is 475 right now.
Thanks and see you later.
Bharat
Title: Re: Poll: Blood Transfusions
Post by: joanne on March 01, 2006, 12:58:02 AM: Dont worry I had a heathy thriving baby boy who is now 15 months old.
His father doesnt have thal...I was very tired with the pregnancy and very nauseous but I never threw up...The worse that happened is I had a small transfusion during my C section
The C section was not related toThalassemia.
Title: Re: Poll: Blood Transfusions
Post by: farfora on March 03, 2006, 09:29:42 PM: for me i took every 2 wks & sometimes every 3 wks ,& my Hb pre transfusion about 8 -9
Title: Re: Poll: Blood Transfusions
Post by: Eponine on March 10, 2006, 04:11:05 PM: Quote from: Danielle on February 12, 2006, 01:41:20 PM
Are you a Major, Eponine?

Yes I am. I'm from Singapore
Title: Re: Poll: Blood Transfusions
Post by: faibe10 on March 10, 2006, 08:20:34 PM: for me it takes 2 packes for every 3 weeks my HB 7-8g :rolleyes
Title: Re: Poll: Blood Transfusions
Post by: baris on April 06, 2006, 02:28:40 PM: I go every three weeks and my pretransfusion Hb is about 9-10. I'm trying not to be lower than 10. However, it's hard to find blood at that time when I need.

Is Michelle thal. major? If she is, congratulations then. I admire her courage. It's wonderful.
Title: Re: Poll: Blood Transfusions
Post by: jzd24 on April 07, 2006, 03:48:07 AM: I usually get transfused every 4 wks. with a pre-transfusion hemoglobin of between 9.7 and 10.9. I have intermedia and have just started regular transfusions 3 years ago, although it should have been much earlier because I have had much pain and health problems. I had my spleen out about 12 years ago at age 42. It was extremely big (20 cm.),and I was very ill. I couldn't walk 4 feet without being very short of breath. The doctor said my spleen was right above my pelvic bone when it was supposed to stop at the bottom of my ribs. I also have difficulty with pain meds. It seems I am sensitive to all drugs except pain medication. After my spleen operation, I was fine until I went home. They gave me darvocet or something like that, and I remember just lying on the couch for a week in terrible pain and just waiting like a junkie for my next pain pill, which didn't help that much. When my husband called the doctor to get stronger medicine, he said no.
I did feel much, much better after I recuperated, with my spleen out. Because I live in the rural midwest of Illinois, where no one had hardly heard of Thalassemia, I didn't start regular transfusions for another 9 years, although my hemoglobin would many times be 6.7. I had to travel to Oakland to see Dr. Vichinsky to get the medical help I needed. My hemotologist was never able to help me, even though I told him I would travel anywhere. I was so exasperated; I finally took my health care in my own hands and found Dr. Vichinsky, called him and went to see him. Luckily, my brother lives near there. Dr. Vichinsky was the one who said I should have my spleen out, none of my doctors were able to ascertain if I should have it removed. I do not take any routine penicillin.
Enough rambling.... For me, having my spleen out was a good thing. I think it gets to a point where it is really working against your body. Thanks for listening, Jean
Title: Re: Poll: Blood Transfusions
Post by: Rudeboy on April 07, 2006, 09:47:54 AM: I now go every 5 weeks with a pre transfusion HbG of 7 give or take. Two units each time and I am exhausted as this is the 5th week. I would actually try 6 weeks, but I'm not daring enough, but if I were to travel, it would be a carefully thought out option.

Jay
Title: Re: Poll: Blood Transfusions
Post by: Miaki on April 25, 2006, 03:18:01 PM: Hello all,

My pretransfusion Hb usually sits about 11.5 and I have been going every 3 weeks, but now I will go back to the 4 week intervals. I fluctuate alot betweens trans.

Miaki
Title: Re: Poll: Blood Transfusions
Post by: Poirot on April 27, 2006, 04:39:56 PM: Quote from: Miaki on April 25, 2006, 03:18:01 PM
My pretransfusion Hb usually sits about 11.5 and I have been going every 3 weeks, but now I will go back to the 4 week intervals.

Just curious about how many units you transfuse at one go? Pre-transfusion HB of 11.5 every 3 weeks on one unit is very good!!

Cheers
Title: Re: Poll: Blood Transfusions
Post by: Miaki on April 28, 2006, 12:10:45 PM: I wish I was only getting one unit. I receive 3 units every 3 to 4 weeks, which is about 800 mls of blood.

cheers Miaki
Title: Re: Poll: Blood Transfusions
Post by: Canadian_Family on April 28, 2006, 02:39:36 PM: My daughter is getting 220cc. every five weeks. She is not ready for second bag as per hopital staff.
Title: Re: Poll: Blood Transfusions
Post by: HUANG on May 08, 2006, 02:16:42 PM: I usually go blood transfusions every two weeks and my Hb about 10.
Sometimes I will go three weeks but if I do that I feel tried than go two week.
The doctor suggests me that I can try to keep my Hb at 9 that is good for me.
So maybe I will change to go every three weeks.
Title: Re: Poll: Blood Transfusions
Post by: TyPhOoN on July 18, 2006, 01:38:09 PM: I usually go 3 weeks receive 2 units. My pretransfusion hemoglobin of between 9.5 and 11 . I hear some patient use a "hydrea" and they are go to 5 weeks or more for blood transfuse, Do you know a HYDREA ? So much sorry, I little speake english and I dont know some word.
Title: Re: Poll: Blood Transfusions
Post by: Miaki on July 19, 2006, 03:48:13 PM: Hellooooooo to all

I was reading through the posts here and realised that Michelle was due to have her 2nd baby on the 18th july.....does anybody know if she had the baby and how mother and baby is doing?

Hope everybody is well.

Miaki
Title: Re: Poll: Blood Transfusions
Post by: §ãJ¡Ð ساجد on July 20, 2006, 06:34:47 AM: Quote from: TyPhOoN on July 18, 2006, 01:38:09 PM
I usually go 3 weeks receive 2 units. My pretransfusion hemoglobin of between 9.5 and 11 . I hear some patient use a "hydrea" and they are go to 5 weeks or more for blood transfuse, Do you know a HYDREA ? So much sorry, I little speake english and I dont know some word.

Hello Typhoon!

I think you are refering to Hydroxyurea! It has a seperate thread in "Working Towards a Cure" forum at Use of Hydroxyurea in Thals. (http://www.thalassemiapatientsandfriends.com/index.php?topic=253.0) Please check it out. I hope that you may find the information usefull
Title: Re: Poll: Blood Transfusions
Post by: riya on August 02, 2006, 06:02:23 PM: Hi everyone!
I go for blood transfusion every fifteen days when i get one pack and if I get two packs of blood I go in three weeks.
Title: Re: Poll: Blood Transfusions
Post by: hippievamp on August 18, 2006, 04:25:54 AM: I go for lab work every 2 weeks and my hgb determines how much I am transfused. The orders are 11 and under 1 unit 10 and under 2 units.

My original hemotologist always said to keep the levels above 10 that it was heathier. And I read in one of the treatment for thalassemia books that I got from www.cooleysanemia.com "that as long as your hgb is 10 or above your body doesn't store away as much iorn esp from foods eaten."
Title: Re: Poll: Blood Transfusions
Post by: §ãJ¡Ð ساجد on August 18, 2006, 05:50:40 AM: Hello!
Welcome to the family! You are doing great keeping your HB above 10. Keep it up! :thumbsup :clap
Title: Re: Poll: Blood Transfusions
Post by: Touta on August 18, 2006, 02:47:55 PM: My Hb level before transfusion is always in the average of 5 to 6 maximum and i get transfusion every 6 weeks as i try to hardly not it gain much iron into my body through the blood transfusion as i'm not using celation currently and waiting to get the Exjade from Europe as it is not available into my country yet. :-\
Title: Re: Poll: Blood Transfusions
Post by: sahil on September 03, 2006, 06:16:53 PM: Hi to all,
I am Sahil 18 years old male and a Thal major. i go for my blood transfusions in every 15 days and my pre transfusion haemoglobin is between 8.5 n 9.0.
Title: Re: Poll: Blood Transfusions
Post by: Andy Battaglia on September 03, 2006, 11:34:12 PM: Hi Sahil,

Welcome to our group. :biggrin
Title: Re: Poll: Blood Transfusions
Post by: akka1981 on September 07, 2006, 04:09:04 AM: I check hb by 3 weeks and if blud count is less than 9 i go for blud transfusion. Mostly its every 3 weeks, rarely 1 ce a month.
Title: Re: Poll: Blood Transfusions
Post by: Maako on September 08, 2006, 01:15:23 PM: Hi friends,

I have already voted in this poll, but i was wondering about the poll.

When it says every week, every three weeks, every month, more than a month it doesnt say how much you take each time. For example, I take two units of blood every three weeks.. but there are many thals in Maldives who cant take two units together due to various reasons so some of them take as frequent as every week and some a week and half, one unit each time. What do you guys think about this?
Title: Re: Poll: Blood Transfusions
Post by: sahil on September 09, 2006, 10:14:53 PM: U are right......i take 1 unit of blood every 15 days So twice a month......
Title: Re: Poll: Blood Transfusions
Post by: Sadia on October 14, 2006, 11:48:22 PM: I go every 4-5 weeks or usually when I feel the fatigue weighing on me.
Title: Re: Poll: Blood Transfusions
Post by: Nur on October 15, 2006, 03:05:09 AM: hi all,

I am a 31 years old Beta thal. I had my first child two years ago and my pregancy was the happiest time for me. I did not have the morning sickness and the cramps like others do. I tried my best to maintain a HB of 7 & up thoughout the pregnancy and went for transfusions every 2 weeks. The Doctor who is treating me said that i can have a normal delivery but when at the last minute, I had to be operated. Everything is fine now and I have a very active daughter to keep me on my toes.

Now, I have my transfusions every 3 weeks and each time i received 2-3 bags of blood. My Pre tranX HB is between 5-6 :whyme and i still have my spleen.
Title: Re: Poll: Blood Transfusions
Post by: §ãJ¡Ð ساجد on October 15, 2006, 05:12:49 AM: Hi Nur,

Pre tranX HB between 5-6 not a good result with 3 weeks TransX gap and each time receiving 2-3 bags of blood.

It can be tolerated but that should be only once or twice. Better ask your doctor to let you come every 2 weeks. But still 2-3 bags are too much and HB should be more than 5-6.

I'm worried. You need to consult your doctor about this.

Take care, Peace!
Title: Re: Poll: Blood Transfusions
Post by: jzd24 on October 15, 2006, 05:18:22 AM: Hi Nur,
Do you get tired or sick a lot with your hemoglobin being so low? Jean
Title: Re: Poll: Blood Transfusions
Post by: Mei Ren on November 03, 2006, 07:12:03 AM: My sis and I don't transfuse anymore... Don't know why or how it happened it just did.. :dunno
We both had splenectomy, mine was when I was still in junior high (1994). And my sister had hers a year after mine.
Title: Re: Poll: Blood Transfusions
Post by: Nur on November 04, 2006, 03:09:47 AM: Dear Sajid and Jean,

I have no choice other than what I am receiving now. I have a rare blood type and this is the best that the doctors can do. If i'm lucky, i will receive more than that but usually the blood are hard to find and i am mostly feeling so tired. It really is an obstacle to me. Imagine on my wedding day, I have to go though it all only on a HB of 5! A truly memorable day i should say for both me and the medical world if they would want to study in the miracle daily life of Thalassemics!

I feel miserable when my HB is so low. Negative thinking would come and i am mostly sad and becomes angry easily all the time even for a small reason. I hate it. I tried to contol my bad feelings thinking that it is just a normal thing if i'm not that tired but that doesn't really works. I spend my time laying down and be useless. A hard way of living, and I can't have a productive life.. I mean, how can I work and have a future as an indipendant women if i can't even sit up for more than 30 minutes? :( I am myself worried. And to have a daughter to take care of, I can't imagine how my future will be.

The strange thing is, I feel hungry most of the time. I can only eat a bit each time so I eat my meals often. Does anyone else feels easily hungry too?

Nur
Title: Re: Poll: Blood Transfusions
Post by: Mei Ren on November 06, 2006, 01:27:42 PM: Quote from: Nur on November 04, 2006, 03:09:47 AM
I have no choice other than what I am receiving now. I have a rare blood type and this is the best that the doctors can do. If i'm lucky, i will receive more than that but usually the blood are hard to find and i am mostly feeling so tired. It really is an obstacle to me. Imagine on my wedding day, I have to go though it all only on a HB of 5! A truly memorable day i should say for both me and the medical world if they would want to study in the miracle daily life of Thalassemics!

The strange thing is, I feel hungry most of the time. I can only eat a bit each time so I eat my meals often. Does anyone else feels easily hungry too?

Nur

I'm just wondering what is your blood type? That's really amazing you survived your wedding day with the Hb of 5...Once my sis had a Hb of 5 she already had a mild paralysis.
About your question about being always hungry, you might want to check your blood sugar. That was how I was diagnosed to be one.
Title: Re: Poll: Blood Transfusions
Post by: Ayesha on November 06, 2006, 03:22:32 PM: Mei Ren am really happy to see a patient who no-more needs transfusion and I pray that you and your sis never needs a transfusion in ur life Ameen and please pray for the thalassemics :) every thalassemic is waiting for this day! and I know that day will also arrive (InshaAllah)

Nur: can I contact you on msn or email? I wanna know these pregancy issues, am 19 years ago and am getting treatment from a endocronologist but i want to prepare myself for the future, can u please guide me?

Take Cares, Bye
-Ayesha
Title: Re: Poll: Blood Transfusions
Post by: Mei Ren on November 06, 2006, 04:00:23 PM: Thank you Ayesha :smile2
I'm sure that day would come too for you & the other thalassemics :winky
Just hang in there & keep praying... :pray
:kissy
Title: Re: Poll: Blood Transfusions
Post by: Nur on November 06, 2006, 05:46:45 PM: Ayesha: do send me an email. everyone else who wants to are welcomed too. I'd love to hear from you guys..and i'll try to help as much as i can. :hug

My blood type is B+ but the difference is in the thing they called an 'antigen'. i don't know much about it beside being difficulties in finding the right donor. I am myself finding it hard to believe that I made it through my wedding day with such a low HB. The most bizzare part of it is, me and my family has been calling up the hospital trying desparately to make sure that they understand my situation and hope that they can find the blood before the wedding day. It didn't happend, and during the ceremony (wedding), the phone rang...guess what, it's the hospital and they called and want me in the hospital for transfusion! It turns out that my blood was finally available during the wedding day... :doh

I only went for ransfusion the next day with henna still clearly visible to every one and it caused quite a stir amongst the staff and patients :crackup

....there is another story on the day i had my baby delivered. I have to be operated and there is no blood too in case something happened. Miracle once again...and I safely went through the operation without any unwanted incident.. It is scary to go through it all but when it's over, You find it a blessing that you get to expirience these things and survived. these things can make you realise that everything in this world is precious and appreciate it a bit more.
Title: Re: Poll: Blood Transfusions
Post by: Ayesha on November 07, 2006, 01:51:20 AM: Nur: I cudnt find your email am sending you a private message, kindly give me ur email in the reply of message :) and you know what? by hearing your expriences I now belive more that GOD is up there and helping us and I know he will help us till the end (InshaAllah), am really happy to hear abt you :) I hope you live a long happy healthy life Ameeeeeeen!

I hope we all live a long happy healthy life Ameeeeen :)!
Title: Re: Poll: Blood Transfusions
Post by: Nur on November 07, 2006, 04:26:26 AM: thanks for those kind words Ayesha.. :hug

:heartpink :heartred
Title: Re: Poll: Blood Transfusions
Post by: jzd24 on November 07, 2006, 05:43:53 AM: Nur,
What an incredible story! How you could make it through your wedding, and then the birth of your child on such low hemoglobin levels, is truly amazing. Your are a very strong and brave person. Good luck to you and your family. :flowers Jean
Title: Re: Poll: Blood Transfusions
Post by: dani75 on November 09, 2006, 08:57:32 AM: every 3 weeks... :biggrin
Title: Re: Poll: Blood Transfusions
Post by: §ãJ¡Ð ساجد on November 09, 2006, 10:20:39 AM: Hello Dani,

Welcome to the site! Feel free to share your experiences and ask anything to all the members.

Hope you find this site useful.

Take care, Peace!