Thalassemia Patients and Friends
Discussion Forums => Miscellaneous Questions => Topic started by: Bappy on November 10, 2013, 01:09:01 PM
-
Hi, friend i hope you having a very good time with your family . Dear friend from last month I faced very difficulties and fever . every fever attack me one by one but i do not know why . Now i facing a critical situation .last 8th November i feel acidity pain in my Stomach and immediately my eye turned into dark yellow. i already drink lot of water but it progress slowly. i try a lot to make it normal but a little acidity pain on Stomach turned my eye yellow again . i complete my hepatitis vaccine and do my HCV test .
I do not know what i have to do now ......!! i do my every thing to make it normal but i unable. please friend mention a suggestion and Sir,Andy please guide me how can i recover it ......plz
-
Bappy,
Is the pain in the upper right quadrant of your abdomen? It is possible that you are having trouble with your gall bladder (stones or sludge) - and you may be having an infection.
If it is not the gallbladder you may need to have your liver investigated carefully. How is your liver function? Your ferritin levels?
How is your appetite? Have you had an ultrasound or mri of your liver recently?
Please keep us posted,
Sharmin
-
I do not know about gallbladder but I talk about gallbladder with my doctor .Today i visited a hemoglobin specialist Doctor and he give some test like CBC, SGPT, S.FERRITIN, RBS, USG OF W/A and ALICO BLOOD ELECTROGRAPHY . I'm preparing to do those test and i hope it'll clear me what is happening. please pray for me ....
-
I am certainly praying for your Babby. You are right it is important to determine what is causing your symptoms so that the doctors can address them. Have you recently had an ultrasound or MRI of your abdomen? If you press gently on the upper right hand side of your abdomen (just under the ribs) is it painful?
I am glad that your doctor is looking in to your symptoms, I hope that you will be better soon.
Sharmin
-
I'm also facing similar problem since May 1st week.
I've undergone gastroscope a and ultra sound testing.
Gastroscope results showed a part of my stomach is eroded and red in color because of H.pylori infection. So doctor have advised me to take antibiotics along with ranitidine tablet.
My ultrasound result revealed that they are multiple gallstones in my gall bladder. So doctor advised me to remove gall bladder thru laparoscopy.
Due to dehydration eyes may turn into dark yellow. Drink plenty of water (1 liter) once you wake up from bed in the morn and have buttermilk. This will reduce yellowing of eyes.
-
Is there any weight loss? And r u feeling stomach pain when u had oily food?
This are the symptoms of gallstone. Better meet an GI specialist too and do ultrasound test.
-
@Sharmin
thanks Sharmin for your message . i don't have MRI yet but thinking to do it as soon as possible .May be tomorrow or day after tomorrow i'll be able to get my total test report , then i will confirm what exactly happened with me . my S.ferritin is 1793 tested on 7-3-2013.
-
@Tamizha
thanks Tamizha for your message . yes i lose my 7 K.g weight within two week and some time feel uncomfortable pain after eating oily food .
-
Better take a ultrasound test.
-
I hope you start feeling better Bappy and it's nothing to serious.
-
Saddam,
Any updates? how are you doing?
-
Hey Bappy,
Please take utmost care of yourself and keep us updated. You're in our prayers and hoping for nothing serious.
Best,
P.
-
I just received my all blood test report . Everything is alright but spleen, S.ferritin are not good. my spleen size is 16.1 c.m and s.ferritin is 2900 ng/ml now . my gallbladder is normal but some sludge is seen in gallbladder . My SGPT(alt) is 93 U/L . please pray for me .............. thanks
-
Bappy,
Andy and your doctor will be able to give you a much better explanation.
The good thing is that you don't have any organ abnormality, masses or scarring. Sludge is common in the gall bladder for thalassemics - my son has it too. I can guide you on clearing that once other things are settled.
I am not sure if your ferritin is elevated due to the stress your body is going through from being unwell or if in fact you have iron overload.
Are you presently on exjade? Combination chelation is an absolute must for your right now - it will solve many of your problems.
I see that your hemoglobin is very low. Low hemoglobin is bad for many many reason - and prolonged anemia will enlarge your spleen. I think that hypertransfusion is necessary to to reduce the size of your spleen. A large spleen reduces your hemoglobin. Low hemoglobin results in heavy increased absorption of iron in the gut - which is a a negative cycle re-enforcing low hemoglobin, large spleen and iron overload.
If your doctor agrees, perhaps look into:
increased transfusion - keeping above 10 at all times.
combination chelation exjade/desferal or ferriprox/desferal or ferriprox/exjade (if approved where u are)
If this does not help you the doctor may suggest removing your spleen - but I think it is worth a shot trying to decrease the size of your spleen by hyper transfusing.
I think one problem is feeding into the next - low hg = large spleen = greater breakdown of red blood cells = sludge in gall bladder and yellowing and iron overload....and so on.
You will be ok Bappy all of these problems can be managed.
If you are on exjade - be sure to split the does (1/2 in am) and (1/2 in the pm) - that may help with your SGPT.
Best and please keep us posted,
Sharmin
-
I have talked with Bappy about this on Facebook and told him the same thing Sharmin has. It will help a lot if you can raise your Hb level, Bappy.
And once again, I will ask that if anyone has excess of Exjade or desferal, please let me know. We've been getting some Exjade for Bappy occasionally, but we need more.
-
If I am able to get any I will definitely let you know - the hospital rations it out so carefully here that it is difficult to get any extra.
I wonder if there is another way to enlist the help of medical centres close to Bappy so that he can get exjade.
-
Saddam,
C'mon. Dont worry so much.
Enlarged spleen and gall bladder are our issues. Mostly for us who were on ineaequate transfusion.(my Hb never exceeded 5gms).
Dont worry much. You are getting good advise here. Talk to your doctor to decide on your spleen.
Coming to your yellow eyes, my eyes were always 'very yellow'. Some people would give me lot of unsolicited advice to get the blood tests for Hep A.
As I know, why it was so, it didnt bother me.
Dont worry, be happy .
-
Rashmi,
That is such a lovely attitude. I am very glad that you are all reaching out and asking questions - that is the only way to make things better. Bappy you are doing well right now - with the improvements in your health that Andy has indicated you can live a better life and remain healthy.
Thalassemia can be managed, and as I have mentioned in another post - the goal now is not just survival - the goal is to feel good and energetic. It is to be healthy, vital and have a good quality of life with some maintenance.
With such low hemoglobins people feel fatigued, unwell and their quality of life is low as well. As I have mentioned earlier, it leads to increased spleen size, heart troubles, increased hemolysis and increased iron absorption.
I hope that both of you will discuss keeping your hemoglobin higher for the future - I would say 10 and above - but keeping it above 9.5 is acceptable.
I know that it is difficult when the decisions are not in your hands, we sometimes struggle with hospital staff but if you are informed and have valid information to back you up doctors begin to listen.
Lena is the perfect example of how a patient can take their health into their own hands and live a healthy and balanced life. She is maintaining good hemoglobin levels and near normal/if not normal ferritin levels. That is my aim for my son - and in whatever way that we contribute - that is thalpal's aim for all of you as well.
Sharmin
-
Sharmin.
Thank you,
At 45 years of age, with a kid and family, in a place like where I reside, it is not possible to maintain an HB of more than 9 gms, for me at least. Pre-transfusion Hb most of the time shows at 7 (luckily this time it was 8)...even while on a 4 weekly transfusion regime. Advice was for a 3 weekly regime....but no, quite difficult for me.
As a child, till infact 30 years of my live, I was not on transfusion.
Once or twice, it even went down to 4......but still I survived.
My parents never panicked or made me feel nervous at any point.
I had a very normal childhood......but my mom took great care of me.
True the spleen size became big, my bones are very bad today, I get exhausted easily And I live with the worst pain on earth.....but still the spirit of living is more important.
Most people around don't even know that I go through the monthly pains of transfuision, that I have such a bad back etc.
Worrying will not do Bappy any good. He ll feel more sick.
All thals and their parents must realized that there is a thing called "THE PROTECTIVE LIFE FORCE OF THE UNIVERSE'. If we can attune our lives to it through our thoughts, words and actions.....then the protection we receive is immense and inconceivable.
To take a few deep breaths and surrender to the protective life force is very imp. for a happy heathy life...to overcome our problems.
Doctors are there. We must pray to attact the best doctors and the best advice.
Thalpal is there, Andy is there and beautiful people like you are there, no here too:)
-
hopefully next day I'll be able to go for transfusion and also able to get a Discussion with doctor . I want to keep my HB% up to 10 to avoid operation .
In Bangladesh there are many problems to get blood ..... in case i have to pay extra to both staff and doctor to get 2nd or 3rd transfusion . which is main cause of my inability. Thanks for your inspiring massage. I'll give you update......
-
Dear friend,
I've visited my hemoglobin specialist on 17 November and we has been a discussion with him . my doctor give me two option after read my report ,he suggested me to remove my spleen or keep hemoglobin up to 10%-12% minimum . I choose 2nd option . i'm trying to maintain my HB% 10-12 minimum .This month i take 4 blood transfusion and I manage desirox for two month .
Dear friend i need your prayer and help. friend my request to everyone if you have extra medicine please help me . friend please please help me .
Thanks for your support
-
I wish you the best Sadam. Splenectomy was the usual thing to do in early days. I had my spleen removed when 2,5 years old which was too soon, however my growth was normal. Nowadays things have changed and doctors suggest not to remove your spleen as long as it does not annoy you. Keeping an Hb of above 10 is required non the less. Goog luck to you.
-
Bappy,
I am constantly praying for you - I think you made the right choice. I wish I had extra medication to sent you. I will try to help in whatever way that I can.
Sharmin