Hello- New here

Hi there,

I recently became a member of this forum and I think it's wonderful that we can actually be incontact with people all over the world who have something in common.

I was and born and raised in South Africa and have been here in Cyprus for 11 years now. I have Thalassaemia Major and go for regular blood transfusions. I recently had my spleen removed surgically (7th Oct 09) and still have the drainage pipe in me as there is still fluid. I have had alot of discomfort and wish to ask anyone who might know if this is normal (Intestine wise aswell).

I have also had alot of pain in my bottom right pelvic area and was wondering if anyone has experienced that aswell.

When they removed my spleen they had also taken a liver biopsy and found that I had a few spots that were "dead" and that I have the first stages of hepatitis.

My Doctor said that I have to put in my desferal 5 times a week and in about 2 months time do a combination with L1 (ferriprox). I used to take the L1 but (10 tablets a day) and found that it bothered my stomach aswell. It also at one point made my WBC drop so I stopped it.

I would also like advice of what vitamins we should take and if we really need to follow a kind of diet as I have never been told anything like that even though our doctor says that she's all clued up with everything as she constantly goes to the seminars etc etc (She is right now in Greece for a semiar)

I also have 2 little children and thankfully they are healthy as the father did not have the stigma.

Life is tough sometimes and there are days like now with all my pain etc etc that I feel totally lost, afraid and depressed, that life won't be "normal" again and ask myself on many occassions "why me"!! But I know that there are people in worse situations......

Andy, if you read this, I think it's a wonderful thing you've done here in the memory of your friend Lisa, God Bless her and you and everyone who keeps up her memory.

Kats
x x x x

Hi Kats,

Welcome on the forum I don't know much about splenectomy ,i think others who have had that might be able to help you out,About L1,we have heard that the liquid form is more suitable for people who have had stomach problems with the tablet form,so check it out if liquid form is available where you live.And yes L1 can cause neutropenia so you'll have to monitor WBC count while you are taking it,start with a low dose and gradually increase your dose,hopefully it won't create any problem for you then.

About vitamins,please try to read through Diet and supplements section as much as you can,thal majors do need vitamins a bit more then normal people as their body depletes them fast.An iron free diet is advised for thal majors,especially iron in form of red meat as it is more readily absorbed in the body,taking tea with meals help inhibit iron absorption from food.

Life do seem tough sometimes ,but good days are never far .

Zaini.

Hello Kats and welcome to the site

Concerning the pain you feel after spenctomy,it is advised by doctors that you have to do abdominal and pelvic ultrasound to make sure everything is normal. Sometimes after the surgery, tiny blood clots happens (thrombosis) in the intestine area and this may be the reason for the pains.

The son of one of the members here had these pains also but took there time and were gone and had nothing. So the only thing that will reassure you is doing the ultrasound.

One more thing i want to comment on is that thalassemia major is not a ''stigma'' any more. Since you became a member here, you will get aquainted to other members who are livig a totally normal life and have achieved so much in their practical life and doing very well. Thal is like blood pressure, diabits,....  some disorder that you deal with through your life but it does not describ you.
We were just discussing this point a couple of days ago, you can read our discussion in this link
http://www.thalassemiapatientsandfriends.com/index.php?topic=3167.0

Anyway feel free to discuss anything that might concern you and we will be there to give you advise, support and love.

Happy to have you here

manal

hi kats

welcome to our site......
ive made the spleenectomy for 3 years ago in oct. 2006
my was 4,5 kilos heavy and after the surgery it comes for weeks a lot of
fluids....then the doctors give me lasics in conbination with spirolacton.....
and then it stops after a few days.

i take now torem with inspra togehter cause its good for the hearth to
to put the to much  fluits away.....
please speak with ur docs.....        
and for the stomach archs......
take 1 pantozol in the mornig and no more stomach-archs again.....
                                                                panos

Hi there Panos, Zaini, Manal...

Thank you for your replies!

I went and did an ultra sound yesterday, the one where you have to drink this liquid and then they inject colour in your veins. They seem to be satisfied with the results and the pain I had was a cyst that broke. I guess it will just take time to recover and I must just have patience.

The surgeon wants to see me next week again and then decide what to do with the fluids as it's a month tomorrow and has no signs of going below 100cm3 / dy.

Yes, we do have the liquid form of the L1 and she has put me on the list to take it. I will probably start in about 2 months time again.

I've never really been effected or thought oif having Thalassaemia until I was about 25yrs old, at that age, alot of things starting to get to me and got me pretty stressed out aswell. I also miss having a father as he was murdered in South Africa when I was 5 yrs old and my brother 3. Life does go on yes, but there is a void that won't be filled.

Thank you uys for listening and being there.

Take care and god willing, insha allah, we'll speak again....

Kats

I am so sorry for your loss Kats,you are right ,some voids remain with us our whole life.But i am sure your father would have been proud of you and would have wanted you to be happy and healthy .

Zaini.

hi kats,
we have to do a lot of things in our life that we dont want to......... but still we do them to keep the cycle of life running. isnt it??