Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: Ambareen on December 29, 2007, 01:52:46 PM

Title: I feel i have reached the end of my road.....
Post by: Ambareen on December 29, 2007, 01:52:46 PM
Hi and salaam......
     I used to work at the Thalassemia Centre for quite a long time,but i had to quit it for some reason, i was a very positive  thinker always hoping for the best, and fighting to keep myself to be in the best of my health, but now i feel as if whatever i do is always felt as not enough, what ever i do is not good enough even when i work very very hard to really make it work well, without wishing for anything in return but just make someone happy or bring smiles over their faces, I guess giving away smiles have made my hands left out with nothing at all in the end, I never lost hope in myself even when i lost my beloved brother Mohd Affan from heart failure. But now i feel as though i am also gonna seal on the same boat as he had a year ago, As soon as he passed away i got diebatics my ferittin is going high now adays even when im so regular with my medication, when mine was the lowest of all in the centre in the seniors group with only 400, now i have the weakest of bones and the doctors have told me not to lift anything nor walk for long, n to take extra extra extra care about my bones as i have developed ostioporosis since i have been taking steriods for a very long time as 12 years, my sugar level is always high (minimum being 280) even when i control my diet alot and stay depressed all the time and i just dont feel like a normal person any more, im feel really fed up of ppl telling me how sick or weak i am all the time, and making me fel like a handicaped so i  thought of giving my life up so many times, and i know that is not a good thing to do at all, So i thought why dont i go for bone marrow so that i can have a  normal life with no thalassemia or have no life at all instead of ppl killing me with slow poison all the time by telling me such thing day and out.

    I have also taken up some classes so that it could help me forget things but even that isnt helping me, i feel as if i have no place to go to any more and no one with me to whom i can talk to as a friend. I had never felt so broken as i feel rite now
Title: Re: I feel i have reached the end of my road.....
Post by: howard on December 29, 2007, 02:20:33 PM
Hi Ambareen,

I could understand how you are feeling at this moment. Everyone of us here is going through a long battle and I could even say a battle till our last breathe.

I have been living with Thal major for the past 30+ yrs and is also a diabetic myself for the past 10yrs. Sometimes i was wondering when can I actually relax and feel like a normal person but I dont think I'll live to that stage.

Some friends actually told me they are debt-ridden, poor etc? But at times I wish I could exchange my life to be theirs and live healthy but poor. I told them that for you people with such setbacks you can easily work hard and gain new life but for people like myself my battle will only cease when the day I lie on my coffin.

I been through a period where my sugar was unable to control high and low anytime of the day and I was in coma for quite a few times. Luckily my doctor managed to get another new drugs to replace my existing insulin which help me a great deal. I believe the current depressing mood that you had is greatly due to your sugar control. I would strongly suggest that you consult your diabetic or endrocine doc to get it treated well.

I don't deny the fact that our life is really a battle but I felt having gone through all these have help me to mature and more sensible in life and how a single life is so precious. My motto has always been Make the best out of my life.

I greatly encourage you to carry on the battle and dealt it carefully, even though we cant lead a normal life throughout but we can at time lead a life better than others.
Title: Re: I feel i have reached the end of my road.....
Post by: §ãJ¡Ð ساجد on December 29, 2007, 02:50:09 PM
Hi Ambreen,

I can't believe I am reading this posted from a senior member who everyone (including me) looks up to. Andy talks about your efforts and service to all Thals. and that has inspired me too. I myself try to offer my services to my Thal. center whether it is making funny faces for the kids during the needle fixing or doing something on the computer or taking part in the blood camps. I just want them to serve Thals. in the best possible way they can and I can be a part of it.

It is in the tough times that tests us the most. You have to feel strong to be strong. Please don't give up hope. Always give your best.
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on December 29, 2007, 06:52:42 PM
Ambareen,

It saddens me greatly to read about the problems you are having. I have to agree with Howard that the depression may be hormonal in origin and related to your diabetes. I think you should follow Howard's advice about talking to you doctor about changing your diabetes meds. I would also suggest trying the supplement, IP6 (phytic acid) as it has shown some ability to lower blood glucose levels, in addition to being a natural iron chelator that can supplement your iron chelator. You mentioned the long term steroid use affecting your bones. Are you on the steroids because of antibody reactions in your blood? If so, it may be possible to moderate the way you are taking the steroid to reduce the dose. I would also like to know what you are taking for your bones. Are you on any meds? Are you taking calcium along with vitamin D? A study I saw recently showed that the vast majority of women who cover, have vitamin D deficiencies even when they live in hot sunny climates, because their skin gets so little exposure to sunlight. Please make sure you are taking a minimum of 1000 iu of D each day. Vitamin D deficiency will add to depression (this is something I constantly battle in my cold northern climate. I have had serious bouts of depression in the past but these have been greatly reduced by taking 1000 iu D daily during the cold months).

Ambareen, you are one of my favorite people and I hope you can count me as your friend. Seeing you and your family is a must every time I travel through Dubai, and I know your parents and sisters love you dearly. I too, have had a hard time reconciling the sudden loss of Affan, and often think about talking to him in your home. At times I can't believe that he is really gone, but I know he would never accept you giving up. You know deep down that this is not you. It is the voice of depression speaking and you must find your way out of this depression, that I am sure is medical in its causes. Please remind yourself of how you have been and the beautiful spirit that is inside you and inspires you to be such a creative artist. Every day I look at the painting you gave me and smile when I think of this lovely young woman that God has blessed with such talent.

Ambareen, I hope you will remember that I am your friend and that I am here anytime you want to talk about anything. I have missed seeing you online and hope to see you on MSN again soon. I talk to your sis frequently and she knows I'm her buddy. I hope you do too. I am hoping so much that I can find myself in Dubai at some point this year and will expect to see you and your family when I am there. Please don't give up. I think we can get some more input from the older thals about how to deal with your physical problems. Your reaching out here shows that inside you don't want to give up and that you do want to find help. You are a beautiful woman with a creative soul and you have been given an artistic gift to share with others. I feel blessed to know you.

Title: Re: I feel i have reached the end of my road.....
Post by: red on December 29, 2007, 07:45:55 PM
hi!
i know i dont know you..
but i just want to say,
i know what you're going through..
and just know..
that you have an emotional connection
with someone in another land,
far away..
and that should mean something, right?
:wub
Title: Re: I feel i have reached the end of my road.....
Post by: Expecting#2 on December 29, 2007, 11:03:46 PM
Ambareen,

I am new to this message board and I have never spoke to you before but my heart goes out to you.

I don't know what it is like to lose a sibling and I am terrified that there will be a day when I have to find out. My 15 year old brother is living with type 1 diabetes and I was employeed with the American Diabetes Association for 2 years. If there are any questions you have about diabetes I have a lot of resources and Endocrine's that I ask questions of all the time for my family.

Diabetes can really mess with your hormones and could very well be a part of your depression. 280 is a very high bg to have for an extended period of time.  Are you on an insulin therapy? What type of insulin are you using?

Andy mentioned that you may be able to reduce the steroids that you are using...steroid use can cause hyperglycemia so if you there is a possible way to reduce your steroid use you may be able to help bring down your blood glucose also.

I had to leave the American Diabetes Association for some of the same reasons you have had to move away from your involvement in the Thal Center. I found that I care so much about people with diabetes and I want so badly for them to be healthy and happy that I felt I could never get a good grip on all that needed to be done. Still being away has been just as hard! 

I hope things get better for you and if there is anything I can do to help I would love to!
Title: Re: I feel i have reached the end of my road.....
Post by: Manal on December 29, 2007, 11:04:56 PM
Ambareen, i totally agree with Andy that inside you you don't want to give up and i am sure you won't too. Remember your brother and how he will be happy seeing you a strong person.  From time to time all of us pass through those depression phases, but hope is the only thing that gets us back to track again and sometimes the many problems at atime defeat us,.. so i suggest you start with only one at a time. Start with changing the endocrinologist and see what he can offer to control the diabits . After this i am sure you will feel much better.

Reading your previous posts always gave me strength so please remember that knowing that your are fine and well is so imprtant to us all.

And truly from my heart Ambareen we are all much (with the severe complications any of us suffer)  better than many people suffering from other diseases.

Ambareen, i believe that one's will can do miracles, am i right Ambareen????

Please know that we are all always here for you anytime

Much love to you
Manal
Title: Re: I feel i have reached the end of my road.....
Post by: Zaini on December 30, 2007, 12:46:43 PM
Ambareen,

Reading your post left me speechless,still i felt like i want to say something,though i am not sure what that something would be,i can't say that i understand your condition,coz i do understand it in words, but i am not really going through it,but believe me whenever i look at people like you,you grown up thals ,i feel hopeful for my daughter,bcoz i know that i always say that thal is not a fatal disease and it's a mnageable disorder and blah blah blah,but deep down i know, that if something will go wrong ,(GOD FORBID) i won't be able to reverse it,like everytime my daughter recieves her transfusion,i wonder if the blood is screened enough not to pass her any disease,she is getting her transfusions from the most authentic hospital in the city,but you can't fight fate,so what should i do? you tell me, help me here plz,should i stop doing everything which is currently with in my reach? should i consider my daughter a hopeless case? i don't think your answer would be yes to this question.

I know you've been through a lot,fighting for every day of your life must be tiresome,i can't even imagin your problems,but let me assure you,i am a mother of a thal patient,and you know what's special about parents,they always see,want to see everything for their kids in the positive perspective,they never loose hope,so just think about your parents,what would they feel if they'll know that you are loosing hope.

I am sure you must have heard that Hadith " Dua is a momin's weapon".I know it's hard to seek solace even in religion when you are depressed,but i've found that eventually it helps you.

You'll always be in my prayers,i request you not to loose hope.

ZAINI.
Title: Re: I feel i have reached the end of my road.....
Post by: Kathy11 on December 30, 2007, 05:51:09 PM
Dear Ambareen, :hugfriend
Yes life can be hard and at times and we do feel that we can't cope anymore,because our pain is so much to bare,It is good that you are able to share your feelings with us ,that in it's own, is a way of copping.you are always welcome because we all hurt sometimes
Tomorrow is another day as long as you are breathing, dont lose hope.believe that there must be a better outcome for your already fragile health,
I am sad to hear that you are currently having a terrible time,we are all pulling together for you and that doesnt seem much but it has to be of some comfort to you.
best of luck my friend and may our prayers see you through your worries :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers.
with love from Kathy.
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on December 31, 2007, 12:54:43 AM
Ambareen, please look at this post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1184.0  The study quoted in the post was done in the UAE.

If you are not getting adequate amounts of vitamin D your body cannot absorb enough calcium to maintain your bones. Vitamin D deficiency can also cause depression. If you are not already taking a high dose of vitamin D daily, show the study to your doctors and ask if they will prescribe high dose vitamin D2 for you.
Title: Re: I feel i have reached the end of my road.....
Post by: Sharmin on December 31, 2007, 07:57:47 AM
Ambareen, I hope that brighter days are ahead for you.  Only you can understand what you are going through, I hope you find the strength and will to get through this seemingly impossible situation.  I send my love and prayers to get you through this situation when you feel too exhausted to pray and go on - I know that the prayers of your friends here will help you get through this.

Love,
Sharmin
Title: Re: I feel i have reached the end of my road.....
Post by: mrtariqkhan on December 31, 2007, 09:23:01 AM
Hi,  Ambreen has written something that would crush the heart of any parent. Firstly I would say to you that all our prayers are with you to help you in this phase of life. I am not good at giving out advice but I will do so here – because I think people like me need to reassure themselves that what they believe is right? every now and then.

    Hope, is all we humans have. First thing that I learned at a very young age was this. It was something that time didn’t teach me easily. I lost my mom at a very young age , I can totally feel how you feel- my world came crashing down too. I didn’t knew what to do, who to talk to as I belong to a very conservative family-  I blamed God for this, thought about killing myself too .  But that wasn’t enough – there was something missing…  I Sat down - thought about what was the most important thing in my life – I was surprised to realize that it was a Hope to see my mom again, to fall asleep in her lap again- talk to her…. So started thinking what was necessary to do that. I found closure in religion- other wise there is nothing available on which you can believe and hope to see your loved ones again.  What would we do if there is no religion to support your thought that one day if you are righteous , you would see your loved ones and stay with them forever.  Such a beautiful thought.

    It was difficult for me to believe on this in the start as I was a so so believer of God. But as time passed I realized this was the only thread  (hope) that I was hanging on to.  God is infact someone that gave us this life and frankly speaking we people who live In a better place of the world as compared to people in war torn countries like Somalia and Palestine take our lives for granted. I know I used to do this when I was living in UAE , spent 20 years of my life there. I know the artificial life that exists there the routine makes you believe that everyone will live for ever. Do you know that the water we flush down the drain in a day is the amount that a Somalian kid gets to drink for a month.

    My sister we all are nothing but humans and mortal ones. There are a lot many kids who didn’t even see the world and die. You and me should be thankful that we have been given a chance to know why we are here – to know our creator, to know that creator of this balanced life of the universe is just in his decisions and has put everything in its place for a reason. just as you and me have a reason to live.

   You guys are what we see our kids tomorrow. You have a greater responsibility on your selves. What you say, is what our children will say tomorrow. You will have to live for all the parents, for your parents who have such miracles in their laps and hope that one day they will be living their lives normally.

  Please, understand your place in this life and hope that everything will turn out fine. It always does…. It requires great courage to speak about your problems it takes a lesserr amount to follow the right path. May God guide you and all of us in this test of life.


 I hope , I haven’t offended you in anyway. Take a lot of care – do what andy is telling you , his advices always work. And live happy and contented with what you get. What you don’t – you will.   :wink
Title: Re: I feel i have reached the end of my road.....
Post by: Ambareen on December 31, 2007, 10:55:47 AM
Hi and Salaam to all you so so so kaind ppl,

  I really dont know where to start, when i read all the replies that i got for my letter i couldnt stop crying and i still am with tears of happiness, you all are so nice i felt like i was..... i dont know what to say i just cant find words,
  Sometimes i find myself standing all alone in the dark and no one to reach to, but all you ppl are like that light in the darkness, im feel so lucky to have you as my friends whom i can open up to in the time of ...... i dont know how to thank you all.
  I will surely talk to the doctors able my insuine and about the vitamin D, Thanks a lot Andy all all of you for taking out your so praicious times for being there for me.
  I will surely let all of you know about me when i completely come out of it, Im really not that kind of a person to get depressed about something, specially regarding thalassemia, i always used to be the one who would say to this positive in life and look at the brighter side, i still am so surprised by the way i was feeling.... insha allah hu taala i will recover i try my best to never give up....

Title: Re: I feel i have reached the end of my road.....
Post by: Ironman on December 31, 2007, 11:30:56 AM
Who said that death will be better?

What about the little boy with no hands or legs and cancer all over the body? Should he give up 2?

I know you, and I know that you know that this is only a stage in life.

If there is no rain, how would you then appriciate the sun?

Giving up/Dying never helped anyone, so start fighting soldier! :hugfriend

Dont make me come to Dubai and yell at you :biggrin
Title: Re: I feel i have reached the end of my road.....
Post by: Canadian_Family on December 31, 2007, 04:43:52 PM
Ambreen,

  I will surely let all of you know about me when i completely come out of it, Im really not that kind of a person to get depressed about something, specially regarding thalassemia, i always used to be the one who would say to this positive in life and look at the brighter side, i still am so surprised by the way i was feeling.... insha allah hu taala i will recover i try my best to never give up....

I saw your latest post and very happy that you are coming over those feelings. We all have a share of good and bad feelings in our lifetime so don't be surprised. Looking at your post I realized you are an optimist, all you need is a little encouragement and help.

Please keep us in the loop because you are among friends.

Regards.
Title: Re: I feel i have reached the end of my road.....
Post by: howard on January 01, 2008, 08:31:52 AM
Hi Ambreen,

Firstly lets welcome the New Year 2008 together and embrace that our health will improve. I'm glad that we can touch your heart and I believe everyone of us here is willing to fight the battle with you together.

Cheers...
Title: Re: I feel i have reached the end of my road.....
Post by: DeMoGoRgOn on January 17, 2008, 11:23:57 PM
oi!! I found you!! you know what .. you've got mesmerizing smile .. guess karo who might I be :P
Title: Re: I feel i have reached the end of my road.....
Post by: DeMoGoRgOn on January 17, 2008, 11:31:57 PM
let me give you few hints
I once said to you , "don't worry imma manage it"
the place wasn't nice
nor the crowd was
but ofcourse I was unaware of it, being a nostalgic :P
a complete stranger in your city
Title: Re: I feel i have reached the end of my road.....
Post by: Alia on January 20, 2008, 06:22:44 AM
dear Ambreen
please dont lose your hope,reading your post have made me very sad i got a daughter who also got thalassimia major,i worry about her all the time, as how would she cop with this battle of thallasimia. One thing makes me hopful is knowing that there are pple like you out there ,who  battle so much with this sickness and still you have high sprit. so please dont think that u are alone , we are all here if you need to talk.lots of love
alia
Title: Re: I feel i have reached the end of my road.....
Post by: Ambareen on January 20, 2008, 10:05:13 AM
    Salaam to all my dear dear friendz......... it makes me feel so happy being around so wonderful ppl, and insha allah i will cop up with it....... i dont know why i got all this weird thoughts when i got so loving and caring ppl around me... you all are my inspiration and i will cherish it all my life.... Thank  you is a very small word to say......   
    Can somebody tell me something about cupping ? Which i have heard about and i guess it may help us to an extent to atleast prolong our transfusion time..!!! May Allahs blessing be showered on all of us insha allah.... ameen
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on January 21, 2008, 03:07:03 AM
Hi Ambareen,

I'm glad your spirits are higher now, and you are right that you do have many friends here. I hope you saw a couple posts from someone (DeMoGoRgOn) looking for you. I know you've helped a lot of people at the thal center and I hope you will feel that you can do that again. Serving others can be thankless and at times quite difficult to continue but every once in awhile, someone says something to you that reminds you just how much good you do, and I am speaking from my own personal experience here. For me, losing friends is the hardest part of doing what I do here and at times I just don't know how I can continue, but the people here always seem to know when I need to hear something positive, and it sets me back on my path. Serving others is a humble path but nothing is more noble. I hope you always will know how much others benefit from your actions. Your smile alone has an incredible effect. Your selfless giving is a truly wonderful thing.

One bit of advice I want to give you, as the more I think about it, the more I realize how serious this issue is. Whatever it takes, you must defeat hepatitis. If herbal medicines can control it, do so. if they are not enough, you may have to use interferon to treat it. I would suggest you talk to Shikha Mitra about her daughter's experience and what she did to fight hepatitis. What happens in your liver affects how all your other meds will work and I suspect the reason your ferritin rose is related to hepatitis. It must be taken very seriously as its effect will aggravate every other condition, If Lisa's hepatitis had been controlled, I have full faith that she would still be with us. Interferon will not work well when the ferritin is high and I am positive this is the reason that interferon therapy failed to control her hepatitis after her early success with the drug. Her inability to take sufficient amounts of desferal led to a ferritin level high enough to interfere with the effect of interferon and also insulin. Please do whatever it takes to control this.

I had never heard of cupping until your post,  so I did some searching. From

http://www.japanesehealingarts.com/japanesehealingarts/cupping.html

Quote
Cupping

In China, archaeologists have found evidence of cupping dating back to 1,000 B.C. And, the Ebers Papyrus, one of the oldest medical textbooks in the world, describes the systematic use of cupping by the early Egyptians, as far back as 1,550 B.C.

Typically, cups are round vessels, 1" to 3" in diameter, and are applied to the body with vacuum suction. The vacuum is created either by means of heating the air inside the cup or by a mechanical pump. The result is that the cup creates an area of low pressure, causing the blood to gather under the cup near the surface of the body. Through this process, the circulation is dramatically increased around and below the surface of the skin where the cups are applied.

Traditionally, cupping has been used to improve blood circulation in the underlying tissues and to stimulate the internal organs. As a result, cupping is indicated for a wide range of digestive, respiratory or gynecological problems where stagnation of "qi" energy or blood is indicated.

During a cupping treatment, the patient experiences a mild pulling sensation which calms the sympathetic nerves and allows a deep relaxation to move through the whole body. It is not unusual for someone to fall asleep during the treatment, waking up afterwards feeling relaxed and refreshed.

For more information about cupping, read "The Ancient Art of Cupping" in the Articles section.

I would also suggest looking at the article about shiatsu on the same site at

http://www.japanesehealingarts.com/japanesehealingarts/shiatsu.html  as shiatsu claims many of the same benefits as cupping.

Quote
Shiatsu

Shiatsu is the Japanese art of finger pressure. Most people associate shiatsu with massage, but actually it is quite different. Shiatsu consists of rhythmic, single point finger pressure applied along the "qi" energy channels or meridians of the body. Shiatsu is simple, safe, non-invasive and at the same time, very effective in the treatment of many acute and chronic disorders.

Based on research in Japan, it has been documented that shiatsu is very effective in calming the sympathetic nervous system and improving the tone and function of the muscles, nerves, blood vessels, lymph nodes, endocrine glands and internal organs. In addition, it has been shown that shiatsu assists the body in eliminating toxins and metabolic waste. As a result, shiatsu is effective for a wide range of problems, including hypertension, headaches, dizziness, irritable bowel syndrome, muscular or skeletal pain, insomnia, nausea, diarrhea and other gastro-intestinal disorders.

After a shiatsu treatment, one feels lightness in the limbs, renewed energy, and an overall sense of well being. In addition, most people experience improved digestion and deeper sleep. This is why I recommend routine shiatsu treatments as the basis of a health maintenance program.

For more information about shiatsu, read "Shiatsu for Stress and Health Maintenance"in the Articles section.

You can see a video of cupping technique at http://www.youtube.com/watch?v=aCCCq1jJY-w

Can this help extend the time between transfusions? I often talk about optimizing the ability of the body to deliver oxygen to the cells. Why does thalassemia damage and eventually kill? It can be explained in very simple terms.  Not enough oxygen is delivered to the body's cells for them to survive. Transfusion temporarily increases the amount of oxygen carrying capability of the blood, but can anything else be done to improve the efficiency of oxygen in the body? The answer is yes. We talk a lot about increasing fetal hemoglobin levels with wheatgrass, resveratrol, folic acid, and drugs like hydroxyurea, but there are things you can do to extend the life and improve the efficiency of red blood cells. Vitamin E can help improve circulation and is also a strong antioxidant, which can help extend the life of RBC's. IP6 is also a good antioxidant and has been proven to protect cells from the damage done by iron and is also a natural iron chelator that is also the subject of research into its effect on lowering blood sugar levels in diabetics. L-Carnitine can help extend the life of RBC's. These are things done internally. Cupping, shiatsu, massage and other manipulating techniques can all have a positive effect on circulation and may have some effect on how long you can go between transfusions. They can definitely help your circulation which will help your blood to be more efficient in delivering oxygen to your cells. Cupping may also remove some toxins so there may be an added effect. These methods can all aid relaxation and help clear the head, so there may also be some therapeutic value.




Title: Re: I feel i have reached the end of my road.....
Post by: Ambareen on January 21, 2008, 02:07:26 PM
Hi and Salaamz to all,

   Thankyou Andy for the info about cupping and shiatsu. i really appreciate for all that you do to make our lifes easier and things you do to bring smiles over our faces.

   Another good thing that i switched my insuline from Lantus to Humulin R, But still i cant understand why my Sugar goes up when i dont even eat anything sugary or stuff that would increase my sugar levels, now itz reached to 300 but it goes down when i take Humulin R. And for my bone dencity they give me calcium 600 and a yearly med through IV called Zulidronate, but i mostly keep getting crackling sounds from my bones when i wake up , sitting down or do any movement.  :dunno
Title: Re: I feel i have reached the end of my road.....
Post by: B Thal Girl on January 21, 2008, 04:46:39 PM
Hi Ambareen
Gald to see that you are in better spirits. I normally come to this forum for support as you are right...its hard at times to hope that things will get better, especially when something else happens to you. I just wanted you to know that I have included you in my prayers as well asking that God gives special strength to you.

Roanna
Title: Re: I feel i have reached the end of my road.....
Post by: Ambareen on January 21, 2008, 05:08:49 PM
You know what.... you all are those special ppl who God have send down for us....... i really feel very blessed to have you all around me...... always keep me ur prayers
Title: Re: I feel i have reached the end of my road.....
Post by: DeMoGoRgOn on January 21, 2008, 10:37:58 PM
Ambreen .. remember that guy you handed over some syringes and all stuff :/ in dubai .. weird hotel .. weird crowd .. ???
bahhhhhhhhh don't think so ...!! :/
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on January 21, 2008, 10:52:48 PM
DeMoGoRgOn,

Was this the recent needle exchange that sent needles to our friends in Pakistan?   :biggrin
Title: Re: I feel i have reached the end of my road.....
Post by: §ãJ¡Ð ساجد on January 22, 2008, 08:22:09 AM
Needles? Pakistan? :huh
Title: Re: I feel i have reached the end of my road.....
Post by: DeMoGoRgOn on January 22, 2008, 11:56:32 AM
you should have seen the look on me face when I first arrived there, but I was too tired to go elsewhere and literally fedup cause I didn't like dubai one bit .. the cabbie was a cheater took, 40 riyals/darham wahtever the currency is, from me.
And all the hotels were fully booked, been to many hotels and everywhere it was like Sorry habibi! we are fully booked..  that didnt' leave me much choice.. you see, so I finally settled there without knowing WHAT WAS GOING ON THERE, but as soon as I entered the elevator I got to know things were gonna get a bit too kinky :P, but Alhamdulilah jitna suthra andar gaya tha waisa hee saaf suthra dubai say lauta hoon and I never plan to go back, its a bad bad bad place and I have this amazing quality of catching up bad STUFF quickly but Alhamdulilah FULL BACHAT .. alright I wasn't really expecting to see any FEMALE GUESTS, so pardon that dumbfounded look on me face, and I wasn't rude .. that straight face was to hide the embarrassment I felt then, hope that explains everything ;)
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on January 22, 2008, 08:35:48 PM
Hehe.....I think I know what you mean about some of the hotels. I was a bit surprised on my first trip there to see so much "activity" in what is a fairly conservative place. My second trip it was a shock because there was some big convention in town and the hotel I was planning on staying at was suddenly overrun with workers from the world's oldest profession. Yikes! I did end up elsewhere.
Title: Re: I feel i have reached the end of my road.....
Post by: Danielle on January 23, 2008, 10:02:40 PM
Ambareen, I'm so sorry that you weren't feeling well, but I'm glad you are doing better.  :hugfriend

I'm sure that all of us feel that we are at the end of our road and feel like giving up at times (I know I do), but we have to keep going and not let this disorder win.  I'm so glad that you came here to vent, because we are all here for each other, and no one knows the trials and tribulations of Thalassemia best than others with Thalassemia.  Please keep your spirits up.  I know it's hard, but please try.

I feel the same way about my ferritin.  I keep using my Desferal, and the numbers keep rising.  It's so frustrating.  When I went to get blood yesterday, I was actually excited to find out my ferritin level, thinking that I was doing really well with my  medicine, and that the number would be lower.  Well, to my surprise, it was higher ... a LOT higher.  Now, I know that some experts say that the level in the blood sometimes increases before it falls, because it's pulling from the organs, but I just think that I'm never going to get ahead, because of all the blood that I receive.   :-\

I'm sorry, this post wasn't mean to be about me.  I just wanted you to know that I feel for you, and we are always here for you.   :bighug
Title: Re: I feel i have reached the end of my road.....
Post by: §ãJ¡Ð ساجد on January 24, 2008, 02:48:36 PM
...I keep using my Desferal, and the numbers keep rising.  It's so frustrating.  When I went to get blood yesterday, I was actually excited to find out my ferritin level, thinking that I was doing really well with my  medicine, and that the number would be lower.  Well, to my surprise, it was higher ... a LOT higher.  Now, I know that some experts say that the level in the blood sometimes increases before it falls, because it's pulling from the organs,....

Hi,

I've been facing the same issue and guess what? My doctor says the same that the Iron is now moving out from the tissues into the blood stream which is causing the elevated S.F result and it is nothing to worry about.  :huh ??? :dunno

F.Y.I My S.F has risen from Higher 7000's to Lower 9000's :quiver :wah
Title: Re: I feel i have reached the end of my road.....
Post by: Canadian_Family on January 24, 2008, 07:22:50 PM
What !!!!!! Sajid are you telling us your ferritin is in 9000 range. I can't believe what I read. Pardon my ignorance I never knew your numbers. I expect from an experienced member to have much controlled levels of ferritin. I am in shock.
Title: Re: I feel i have reached the end of my road.....
Post by: Danielle on January 24, 2008, 09:09:24 PM
Hi,

I've been facing the same issue and guess what? My doctor says the same that the Iron is now moving out from the tissues into the blood stream which is causing the elevated S.F result and it is nothing to worry about.  :huh ??? :dunno

F.Y.I My S.F has risen from Higher 7000's to Lower 9000's :quiver :wah

Sajid, :hugfriend

What iron chelator do you use and how often?  I'm very worried about your numbers, Buddy.  Has your doctor recommended anything different?  ???

My doctor wants me back on the Exjade along with the Desferal, so that's what I'm doing.  I'll see how that goes.  I just feel like whenever I get my numbers down, they go right back up again, because of all the blood I receive.   :dunno
Title: Re: I feel i have reached the end of my road.....
Post by: Manal on January 24, 2008, 11:59:19 PM
Sajid, please do take care.  I know you are much more expierenced in chelation so please do something :-\



Ambareen, when i went to one of the medical centers to give my son his treatment, i saw many people there who take ozone sessions to help them with virus C. Today i asked the doctor how ozone helps and he said that:
1- it increases the body immunity by acting against free radicales
2- helps the body to excret its own interferon to fight the virus. The natural body interferone is suitable for all versions of Virus C rather than the interferone medicine which is only suitable for version 4 of virus C
3- Virus C has something called ''motlia'' by which it can cling to the liver cells, get attached to them and then excret its RNA in the liver cells causing is replication and therefore an  increase in the quantity of the virus causing cibrosis. So what the ozone does is that it weakens or does not enable this motlia to function and therefore the virus does not get attached to the liver cells. So the virus becomes free and acts as a dorment virus. So the ozone does not get rid of virus C, but help in making it dorment by not enabling it to replicate, resulting in lower quantities.

The doctor told me that ozone is not a treatment, but it is an aiding treatment. Patients don't stop taking their liver medicines but they stop taking the interferone.

I talked to a couple of patients in the center and they said that after excessive course of ozone, there quantities had significantly decreased

Ozone is taken through the blood. About 100 ml of blood is withdrawn then the blood is mixed with the ozone gas with calculated concentration then the blood is transfused back to the body.

I just came to know this about virus C, and i hope that this could be of any help to you

Take care
Manal
Title: Re: I feel i have reached the end of my road.....
Post by: §ãJ¡Ð ساجد on January 25, 2008, 07:01:19 AM
Hi everyone,

Thanks for all your concerns :grouphug

Well, my doctor is not worried much and is telling me not to also since the previous test was taken when I had joined J.S.F and was taking 2g Desferal only once a week or two. While the newer test is taken after I have been regular on 2g Desferal (6X a week; well there had been some supplies issues for about a month or so but definitely I have been taking more Desferal compared to before joining JSF). So, my doctor's theory is that the Iron is now mobilised from the organs to blood stream from where it will go down once all the stored iron is evacuated from the organ tissues.

Let's see what happens in the upcoming months :grin
Title: Re: I feel i have reached the end of my road.....
Post by: Zaini on January 25, 2008, 08:59:33 AM
But Sajid!!

This is still high, plz do something,doctors often ask us not to worry bcoz they see patients with that high ferritin almost every day (sorry guys but this IS the sitution in Pakistan)but you know better then them, so plz do worry  :wink

ZAINI.
Title: Re: I feel i have reached the end of my road.....
Post by: §ãJ¡Ð ساجد on January 25, 2008, 10:38:53 AM
Hi Zaini,

I know what you mean. The reason why I'm contented is the sudden increase in SF level. I had been taking less Desferal for about 10 years or so and the level went up to about 7000 but when I started to take it more the level increased by 2000 in just 6 months. So this means my doctor's theory could be correct (at-least I hope so :biggrin)
Title: Re: I feel i have reached the end of my road.....
Post by: Canadian_Family on January 25, 2008, 07:33:53 PM
Sajid,

You keep watching your numbers and please let us know how are you doing.

Thanks
Title: Re: I feel i have reached the end of my road.....
Post by: Smurfette on January 26, 2008, 05:08:17 AM
 :sadno

OMG Sajid!!!!!

What has happened? In the 30 yrs I have been taking desferal my SF has never reached that high....

I hope that your doctor is correct with his theory...It is true that the SF does come out of the organs...

Hope your results are better the next time you post in here

 :bighug
Title: Re: I feel i have reached the end of my road.....
Post by: Zaini on January 26, 2008, 05:29:07 PM
I wish you the best Sajid,i think your doctor's theory might be right,bcoz we've seen this happening with the new exjade users,there S.F levels go high before coming down,i hope same is the case with you.

ZAINI.
Title: Re: I feel i have reached the end of my road.....
Post by: Hope on January 26, 2008, 05:33:08 PM
Ambreen, I am soo touched by your post. I had tears in m y eyes when I read the post. Then as I read more posts, I felt very happy that you have got back your inner strength. I pray that you stay strong and be a guide for new parents like us.

Sajid: Please take care of your ferritin. Here is US, many people have tried combination therapy (L1(on compassionate ground)+ Desferral) to quickly reduce iron overload. As you know that high ferritin is not good for your heart, please talk to your doctor to find out if you can use the combination therapy. I am soo worried for you. please do take care.
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on January 26, 2008, 08:10:53 PM
Sajid,

It is quite likely that your doctor is correct, as we see this over and over with iron overloaded patients, once they start regular chelation. I believe it is a good sign as it means the iron in the body tissue and organs is being released so that it can be chelated. This is normally a short term rise, and the fact that you are taking more desferal these days is the most relevant thing here.

Sajid, I am going to be frank with you. You are at an age when heart failure can happen quickly in the iron overloaded patient. Your diligence in chelating now  is the most important thing. I agree that you should also reconsider L1 in combination with desferal, as nothing will work better to lower your high iron load. Even if you can take a small dose of L1 daily (I know a patient who is almost 40 who has done this along with desferal and has out survived her peers in a situation where few reach her age) you will greatly enhance the chelation taking place in your body, and since L1 works so much better than desferal at removing heart iron, if at all possible, you should take a second look at L1 if your white cells are at a  normal level. Please also convince your mom that IP6 had nothing to do with the amoeba illness you previously contracted. That can ONLY be contracted from water containing the amoeba and this is common in warmer climates (even Florida).

We want to see you stick around brother.
Title: Re: I feel i have reached the end of my road.....
Post by: §ãJ¡Ð ساجد on January 27, 2008, 12:26:48 PM
Hi everyone!

Thanks for your encouraging words.

I'm trying my best to chelate provided the supply of Desferal is continuous. There was a gap of about a month before I was able to get them again due to supply issues, holidays and December tragedy. I'm due to get another stock for upcoming weeks; let's see if I am able to get some tomorrow.

My doctor isn't much impressed with my WBC counts to start L1 because she just manages the transfusions and goes by the book for chelation; however, we have a visiting (hemo) who wants to give it a shot (probably for experimental reasons) but that was before I got my latest S.F and my doctor had postponed his request till the result had come. I wonder if she will do it when the next time he visits us. ???
Title: Re: I feel i have reached the end of my road.....
Post by: Zaini on January 29, 2008, 05:59:33 AM
Quote
We want to see you stick around brother.

Please take care Sajid,you are an exceptionally intelligent and brave person,i am looking forward to meeting you someday .

ZAINI.
Title: Re: I feel i have reached the end of my road.....
Post by: Ambareen on January 31, 2008, 03:21:40 PM
Salaamz to all....

 This is the first time that im reading about combining EXJADE and desrafal together, coz in our centre its said to be dangerous to do that...!!!
Title: Re: I feel i have reached the end of my road.....
Post by: Danielle on January 31, 2008, 09:38:04 PM
Were you able to get any, Sajid?  ???
Title: Re: I feel i have reached the end of my road.....
Post by: Ambareen on February 01, 2008, 12:31:40 PM
Salaam...

 Thanx a lot Manal, i will keep that in mind and asked my doc. about it as soon as possible...
Title: Re: I feel i have reached the end of my road.....
Post by: §ãJ¡Ð ساجد on February 01, 2008, 03:19:19 PM
Hi Danielle,

I will go tomorow for my TransX and since it will be Saturday; hopefully he will vist J.S.F and examine my case. He usually vists on Saturday.

So, let's hope for the best :thumbsup
Title: Re: I feel i have reached the end of my road.....
Post by: Danielle on February 01, 2008, 10:35:38 PM
Does that mean you haven't been able to acquire any Desferal?  ???  Please let me know if you cannot get any, because I will see what I can do for you.   :hugfriend
Title: Re: I feel i have reached the end of my road.....
Post by: §ãJ¡Ð ساجد on February 02, 2008, 12:34:42 PM
Hi Danielle!

Desferal?!? Oh, I was talking about combination therapy L1 with Desferal. I got the desferal that day and boy! they sure are short! They got about 4000 Desferal instead of what they usually get and they freshed out within 10 days!

Today I had a transfusion and the Hemo visited us but he didn't seem to be convinced in changing anything for me so I am still on Desferal at the usual dose.

Thanks for your generous offer though! :hugfriend
Title: Re: I feel i have reached the end of my road.....
Post by: Hope on February 04, 2008, 09:11:16 PM
Sajid,

I think you should talk to your Hemo for more intensive chelation therapy for you. I am not a doctor but a mother with a Thal Major child and after reading available resources on the internet, I truely feel you need much more intense chelation than what you are using now.
Title: Re: I feel i have reached the end of my road.....
Post by: §ãJ¡Ð ساجد on February 05, 2008, 07:23:41 AM
Hi Hope!

Thanks for your kind words. I don't think there is anything else that can be done more extensively than what I am getting. After all, I am the only member that takes out the most of the Desferal supply than anyone else at JSF :biggrin. I can't start Kelfer due to low blood counts and I'm allergic to Desferal via I.V

Asurna(Generic Exjade) was a ray of hope but it seems to be more of a gamble than hope.

In the end it all adds up to my health and how am I feeling; and I feel like a million bucks :grin as of now I don't feel sick or anything wrong. So, everything is "Just fine" and I hope that the next S.F readings will be much better, provided I get continuous supply of Desferal.

Thanks again everyone for your concerns. :grouphug
Title: Re: I feel i have reached the end of my road.....
Post by: Hope on February 05, 2008, 04:22:43 PM
Sajid,
I hope your next SF reading comes out much lower.
Title: Re: I feel i have reached the end of my road.....
Post by: Eponine on February 06, 2008, 12:11:35 PM

 This is the first time that im reading about combining EXJADE and desrafal together, coz in our centre its said to be dangerous to do that...!!!

Hi Ambareen

Many studies are still ongoing regarding the combination therapy of Exjade and Desferal. Some think that there is not much use of it becuase both Exjade and Desferal gets rid of Iron in the liver rather than the heart. So its like taking two different types of medication for the same illness.
Title: Re: I feel i have reached the end of my road.....
Post by: Miaki on February 06, 2008, 01:41:00 PM
Hi once again,

I have also not heard of studies with Exjade and Desferal as Epomine mentioned that yes they both work the same organ (liver)

They should, if they have not started already a study of Exjade and L1, Exjade for the liver and L1 for the heart. Now wouldnt that be wonderful  :biggrin

Miaki

Title: Re: I feel i have reached the end of my road.....
Post by: Danielle on February 07, 2008, 07:23:21 AM
I thought they found that Exjade removed iron from the heart?  ??? 

Nice to see you around, Miaki.   :hugfriend
Title: Re: I feel i have reached the end of my road.....
Post by: B Thal Girl on February 07, 2008, 03:18:13 PM
No from all articles and papers submitted up to today, the ONLY chelator which has been proven to remove iron from the heart is L1 (deferiprone)
Title: Re: I feel i have reached the end of my road.....
Post by: Danielle on February 07, 2008, 06:32:09 PM
I'm on my laptop while getting blood right now, and since I have been extremely bored out of my mind, I thought I'd read a little more about it, and I found a lot of literature that suggests that Exjade does remove iron from the heart.  :)

Here's one of the articles...

http://www.drugs.com/clinical_trials/once-daily-exjade-shown-remove-toxic-iron-heart-liver-according-data-presented-ash-3005.html

And here's a quote taken from that link:

Quote
At a dose of 30 mg/kg, Exjade lowered both heart and liver iron levels in most patients," said Dr Farrukh Shah, Consultant Haematologist, The Whittington Hospital NHS Trust. "These data add to the growing body of evidence that Exjade successfully removes iron from the heart.
Title: Re: I feel i have reached the end of my road.....
Post by: Zaini on February 08, 2008, 01:16:54 PM
L1 and Exjade !!!!

It would be thunderful  :biggrin no more needles.

ZAINI.
Title: Re: I feel i have reached the end of my road.....
Post by: maryo0m on February 10, 2008, 12:40:43 AM
Hi :wavey
I just wanted to say that no matter what you should never give up I know its hard but you have to think positive and trust me that will change you and the way you feel  :wink

Its great to hear that you took classes Im so proud, But Plz re think about going to do a bone marrow transplant because at your stage it might be risky with so weak bones.

I'll tell you somthing plz plz pllllllllz dont give up I bet ur a strong fighter  :kiss :getwell

wishing u the best
Title: I feel i have reached the end of my road.....
Post by: Ambareen on March 28, 2008, 11:51:29 AM
Salaam...

 I would like to know a bit about Red Clover. Is it of benefit to the liver..? Coz i have been suggested to use it for my liver function, and i will be going for a liver biopsy very soon and hope the results would come out good insha allah coz im a bit worried about it.
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on March 28, 2008, 03:42:50 PM
Hi Ambareen,

Red clover is used as a liver tonic and is supposed to help purify the liver. The only warning about it is to not use it with blood thinning drugs like warfarin as red clover is also a blood thinner.
Title: I feel i have reached the end of my road.....
Post by: Ambareen on April 16, 2008, 07:15:43 AM
Hi Andy,

   I have done my liver biopsy and the test results would come in 2 weeks insha allah, but if the results come out saying that i have to take interferon, is it ok if i delay taking it? will it have any negative effect on my liver coz ill be travelling to India soon and taking the treatment during my travel wouldnt be a sensible idea coz of the side effects of it, i just want your advice, plz help...
 
   And i have stopped taking red clover for now coz somebody suggested me not to take red clover along with Vit D, is that true..?
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on April 18, 2008, 05:09:47 AM
Hi Ambareen,

I have no idea why someone would say you can't take red clover with vitamin D. There is a list of possible interactions at

http://www.umm.edu/altmed/articles/red-clover-000270.htm

Quote
Interactions and Depletions

Red clover may interfere with the body's ability to process some drugs that are broken down by liver enzymes. For that reason, you should check with your doctor before taking red clover.

Estrogens, hormone replacement therapy, birth control pills -- Red clover may alter the effects of any drugs containing hormones or derivatives of hormones, as well as the levels of hormones in the body.

Tamoxifen -- Red clover may interfere with tamoxifen.

Anticoagulants (blood thinners) -- Red clover may enhance the effect of these drugs, as well as herbs and supplements that have blood-thinning effects (such as ginkgo, ginger, garlic, and vitamin E).

Diabetes drugs -- Red clover may lower blood sugar and alter the effects of drugs taken to control diabetes.

The interaction that might interest you is that red clover may lower blood sugar. This could result in lowering the insulin dose, which is a good thing.

In addition to its purifying properties, it has been well documented that red clover helps prevent bone loss. The study that showed this also measured the vitamin D intake to account for the effect of vitamin D on bone density. There was no concern that there would be any reaction between red clover and vitamin D. I think you should continue to take the red clover for several reasons.

Unless your biopsy shows some extreme liver results, I don't think there would be any problem waiting until after your trip to start interferon therapy. I would suggest you keep taking your red clover during your trip and if you can find milk thistle anywhere, that you also try that. I know several patients who have had positive results using milk thistle to help control hepatitis. I have recently seen it mentioned as an iron chelator also, so it has multiple positive effects.
Title: I feel i have reached the end of my road.....
Post by: Ambareen on April 18, 2008, 10:54:48 AM
Hi,
 
 Thanx a lot big brother. I surely will continue to use red clover again insha allah and yes i did find milk thistle too in the same place where i got red clover from. That was a great help thnx again.
Title: Re: I feel i have reached the end of my road.....
Post by: mel on May 18, 2008, 08:24:30 PM
hey dont give up,i did and now im diebetic i stoped toin my desferol for 5 years now im iron overloaded and on the brink of death if i could go bak in time i would b on top of things insted of falling under !!! im only 24 years old duno if ill reach 25 ???
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on May 18, 2008, 08:26:55 PM
Hi Mel amd welcome,

Are you currently chelating and what are you using and how much/how often? Don't give up. Aggressive chelation can save you.
Title: Re: I feel i have reached the end of my road.....
Post by: nice friend on August 02, 2009, 09:59:55 PM
i want to send a post under this topic , and written a log post but decided not to post coze that is that will de-moralise people , but i wana say that , i dont know wat to do , dont want to be a reason of making some people feeling sad and de-moralised and want to yell out everything that is pinching my mind since a long time , confused , really confused .... dont know wat to do ....
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on August 02, 2009, 10:02:50 PM
What's going on Umair? I've been wondering why you've been so quiet lately.
Title: Re: I feel i have reached the end of my road.....
Post by: Manal on August 03, 2009, 01:52:48 AM
Umair  my friend, during out lives there are always ups and downs, this is quiet normal. Please feel free to share whatever bothers you just write what you feel. We are always here to  and comfort you. :hugfriend :hugfriend

manal
Title: Re: I feel i have reached the end of my road.....
Post by: Zaini on August 03, 2009, 04:57:51 AM
Umair,

Bro,look whats happening with the one who started this post,she is getting happily married,isn't that great,we all have what i like to call those gray days or rough patches in our lives,it happens with me all the time,and i am such a drama queen that i can drag everything to days  :rotfl but i know you,you are not a coward,you are a fighter,so sharing won't hurt,it will only help,and don't worry no body will get de moralized,you remember that verse "girtay hain shah sawar hi maidan-e-jang may "?,so tell us whats going on,and i know in a few days you'll just get up,dust it off and will start cracking jokes again  :biggrin.

And keep in mind we are lucky to have you here.

Zaini.
Title: Re: I feel i have reached the end of my road.....
Post by: maha on August 03, 2009, 05:04:39 AM
Dear Umair
The person who started this post was Ambareen . At that time she felt she had reached the end of the road, But where is she today? Today she is on a brand new road embracing what life has to offer....lots and lots of happiness. She just got married. When the going gets tough the tough gets going.

So get up get going buddy

take care
maha
Title: Re: I feel i have reached the end of my road.....
Post by: nice friend on August 03, 2009, 08:01:55 AM
Quote
I feel i have reached the end of my road.....
when i saw this topic i thought that its common thing with thals and thals do face this many times in their live , bcoze this stage came in my life many times and still coming back again and again and again , still fiindinng a way to COP with this kind of situation but sumtime this controle's my mind really badly and pull's me towards  give-up , yaeah i understand u people are feeling a lil shocked bcoze of hearing this to me but its true , its true that i m trying to cop with this situation , nothing is looking good to me just feeling exhausted although m in best state of health i eveer been my S.FE is around 1000 my liver reports are fine no prob with Hb but still everything is looking bad to me , dont know why  ...  but its true that now a days m not feeling good , feeling like i have wasted my life and i cant get ride of my life , i cant get back to live a normal life with a secure future , No future , no directions where to go , dont know wat future is holding for me ... just living the life day by day , no future plans , infact not sure if i did good to controle everything like Fe and etc etc or i was wrong that i can join the life and get reach the speed of the life back  ..... really ... i dont know why these thoughts are capturing my mind when i m in best state of health i ever been , these thoughts never captured my brain even when i was near to die and also not when i was on wheelchair and was disable to set my pillow for me , then why my mind is going to think that way , i  know these thoughts r not good to think but i cant stop my mind thinking this  way ... feeling really tired after experiencing many things in past 4 years ... dont know how can a person who dont like's 2nd prick and swelling kind of stuff even on Tx day , prepared himself to prick himself by his hands almost 100 times a month , can u believe it , feel's like real inner Umair has lost somewhere in the darkeness of this diseas .... but i know that ,i can pass through this time safely and will b back on track soon but when dont know ... althougt m not gonna give up, bcoze i dont wana die bfore the death  but m feeling like a last soldier standing in the battle field of life, not fighting to win not fighting to run away ( bcoze he know's he cant run away) , standing only bcoze he dont wana be a prisoner of life ... when-ever i got some time to think my mind goes this way to think i dont know why but i m trying hard to forget my past wat-ever happened to me but whenever i got some time those memories struck  hard, it feel's like those memories are stuck in my mind and blink's when-ever i got soe sapre time to feel bored ..... these summer's hot days are really boring ...
anywayz .... another thing, my fate is working hard to let me down, since a long time, wat-ever i m trying to do went wrong.. i decide to stay away to PC to avoid making more serious mistakes that i did in past 1 or 2 months .. but my fate searched me and found me awe , that is start happening on mobile too ... wat can i do ... i dont check or reply SMSs daily but this seriel of mistake is start happening there on mobile too ... AWE AWE AWE ...... :whew feeling exhausted bcoze of all the stuff happened to me in past 1 and half month , mistakes , mistakes, mistakes :whew ( i always keep doing sumthing wrong, sumthing upside down and down side up , sumthing like really serious mistakes , sumthing that show's m a perfect DUMB )

shuh :whew at-least finaly i've said much of that wat i wana say .....

@ Andy ,
all that i mentioned above is why i m quiet since a few days ..... silenece has broken and u can se the results above , deep thoughts was (and for  a few still there's still "Are" ) behind that silence ...

@ Manal ,
Thanx for reassuring me that you people are always there to hear , it feels good :)

@ Zaini ,
yeah Sis, i congrats her and saw that amazing and super news on forum ...but my prob is a lil different my grey days always chase me where ever i goes ... yeah i will try to stand up and dust off my shoulders ASAP ... Sis, i m feel more lucky than you people, to know you people and to have a forum like this to express wat i feel, its a big relief when you get an ear to listen , wat u wana say :) ....

@ Maha ,
Sis , i didn't exactly mean to say end of the road , it was frustration behind all that , frustration and tiredness bcoze of been in troubles for a long time, problemes still raising their head up and it has  been a long time since its happening its less health probleme and more others .. health wise m  fine n happy to see this much improvements , liver reports are fine , hep-C report is showing improvement , iron controled , but only  Diabetes is sumthing that nobody can say its in controle but its ok with it too its only one thing that is troubling in my health profile all the rest is fine  .... so, ther's no prob  with health ... i dont and unable to figure out wat my prob really is ...   Thanx alot Sis for encouragement and for being there it made me feel really good to see such encouraging reply, i will try to b happy always    .. Thanx Alot  :) ....

Thank You All , for being there and giving me a chance to express wat i feel .. i m really thankful of you people for being there for me to make me feel better .....

Best Regards
Take Care
Umair
Title: Re: I feel i have reached the end of my road.....
Post by: maha on August 03, 2009, 09:41:45 AM
Umair
At your age you should either be studying or working. If it is not possible to continue your studies, then you should join your dad in his business. Let thalassemia not be an excuse to keep you away from work. Remember an idle mind is a devils workshop.You had mentioned many times in your earlier posts that you would join your dad once your ferritin was in control. Now it is in control, isn`t it.

take care
maha
Title: Re: I feel i have reached the end of my road.....
Post by: nice friend on August 03, 2009, 11:54:11 AM
Maha,
when i was writing my last post that i sent under this topic i wrote this all too, but after that i edited these lines out off that post ... i dont wanted to open up pandora box of problemes but every probleme and every frustration is linked to another and there are lots of things to be fixed in my life ,, anywayz i m planning to join my father at bussinses my father , my bro, and my uncles will help me settle in that , that's wat really comforting they all wana see me settled in bussincess with them  , i have a sincere, loving and caring family  and that's wat i m blessed with by the GRACE of GOD ...... but indeed life is really dificult to live , not only for me but for every human being on earrth , every human being is working hard to survive in this jungle people .. its a blessing to have a nice, sincere, loving and caring family and surrounding of peoples  , and that's wat i blessed with , i m lucky at this front of life ... i think i also dont know wat my prob really is :) .....  dont worry  , i will cop  with it really soon ... :grin thanx Sis for giving me a chance to say that wat i've edited bfore this time to my last post , i m really tankful of you , and thanx for the encouragment and sugestion , i will join my father at bussines really soon ... yeah my Ferritin is in controle but its summer and load shedding that is stopping me to go for that ,  at the place where our shops load shedding schedule is really soo tough to bare .. and the thals i know have joined their family businesses they r on leavenow a days due to load shedding of power ... my cousin who is my best friend as well told me that i will keep thinking of joining business or i will really join business hahahaha ..... mayb in september i will b able to join , till then , time pass :grin ....

here it is wat i wrote and then edited after posting that on forum ...
----------------------------------
i cant even mention all those things i went through, i faced, and have solved ( By The Grace of GOD ) in last four years .. there's an endless list of that , not only Thal related probs but a few more like how to step into my social life and how to step and secure my future, these are the more biger probs than thal , i m not used to go out and never went out alone (that mean's by driving car or riding bike, always went out with family or someone  to drive car ) thats why it seems really hard to survive in this jungle like world , that's wat more disturbing and scary than reaching the end of the road , i never been scared of reaching end of the road and all the thoughts like this, that's why m feeling a lil bit worried how to step into life , although my bro and my parents even my uncles r there to help me out to start this all, but feeling that it would b really hard to start it .......... givig me a chance to raise more issue a thal would face in his life ,, i hope one day this discussion will help finding out the solution for thal over these issues .... hoping to help out other thals and myself too .... these r the ups n downs of the life , doesn't matter i have been through many worsen situation than this one, and got out of that , and i will get out of this one too ...

Best Regards
Take Care
Umair
Title: Re: I feel i have reached the end of my road.....
Post by: Lena on August 03, 2009, 04:43:34 PM
Umair,

I have now seen your posts in detail. What are you talking about? you said it by yourself: your health is  at its  best now. Isn't this a blessing? You achieved your goal and you'll succeed further on.
Maha is right, you should find something to occupy yourself instead of constantly thinking of thal. Get a job, go out, socialise, get new friends, new interests...DO SOMETHING! LIVE YOUR LIFE!

This is what you need right now. Everything else gets under control.

Lena.
Title: Re: I feel i have reached the end of my road.....
Post by: Emby on August 03, 2009, 06:43:10 PM
brother umair,

please be strong....please find your inner strength.....
brother umair one thing we have absolute guarantee on when we are born......death.  we all have to die one day.....meanwhile we have to live.  in what ever condition we are in we must try to make the best of it. our health...we can improve it..our lives...we can't change the past but we can shape our future..our sicknesses..we have to learn to live with it..deal with it..manage it.
death is there....a 100% guarantee....everyone is fighting their fears...their inner demons...but move that demon out of the way...find that 'sakina'...find the sukoon..inner peace..and dear brother....live your life....

emby
Title: Re: I feel i have reached the end of my road.....
Post by: nice friend on August 03, 2009, 09:46:40 PM
1st of all i want to mention that i m not affraid ofdeath i m just worried about how to live the life ... i was thinking about the way  to spend life , i never been affraid of death in my whole life.  

@ lena, yeah,  its a blessing that  everything is fine now , yeah mayb i have alot time to think thats why this happened ...
Quote
Remember an idle mind is a devils workshop
i thnk it's the main reasonof all this ... i will start doing sumthing really soon .. Thanx alot :) for encouragement :)

@ Emby ,
as i mentioned abovie i never been affraid of death and  m not affraid of death now too , but never pray for that too bcoze that come's under the mourn'nes which  is not good  ,  so its not my prob .. probleme is to live until the time come's up  :teehee just kidiing , it was a bad patch , i was surrounded by bad thoughts and i behaved like a "dramay baaz " ...  Thanx alot sis, i dont know why i behave like a"dramay baaz" time to time, i m sure it wil happen again , but not in  soon future , you have to wait for a few months for the next story ( coming soon but not very soon :P ) .... Thanx for ur support sis , that made me feel better .... thanx alot for taking time to reply this weird thread  ... lots of Best Regards for your Kids :) ....
----------------------------
i think i have to live the life as life want me to live it, i think i have to stop thinking and start living the life now, it will b better not to think and just to live it, i will try to live like i want, i will never think of give up again and cant think this as well, bcoze i have experienced the give up scene , that took me on wheelchair and that took my 2 years of my life, it took a long time to come back in life from that condition, i will live my life and will keep trying for good,  i dont wana see in my past that is  a harsh reality but i dont know what why and how that happened and won't to know as well ...

it define's this moment ver well
[bgcolor=#ffff00]Sometimes , God breaks our spirit to save our soul.[/bgcolor]
[bgcolor=#ffff00]Sometimes , He breaks our heart to make us whole.[/bgcolor]
Sometimes , He sends us pain so we can be stronger.
[bgcolor=#ffff00]Sometimes , He sends us failure so we can be humble.[/bgcolor]
Sometimes , He sends us illness so we can take better care of our selves.
[bgcolor=#ffff00]Sometimes , He takes everything away from us so we can learn the value of everything we have[/bgcolor]

i dont know why i didn't see the message of my own signature ...  dot wana say anything more. ...i dont know why i was thinking like that ....  i never been like that  NEVER , and i there r lots of people who canconfirm this that i neer been like that since i m here on  forum ... Thanx alot for bein there to make me feel fine and to help me get out of this , and to help me to be like old umair ...

i dont have any habbit of proof reading and reading post after writting and readin post bfore posting ..so , if you find sumthing upside down in this post or anything that is not good then dont hesitate to inform me , i will edit my post :grin ....

Best Regards
Take CAre
Umair
Title: Re: I feel i have reached the end of my road.....
Post by: Manal on August 04, 2009, 02:49:55 AM
Umair

I am happy that you feel much better now and i too agree that the lack of a goal in your life is behind all those negative thoughts. I am sure now it will be more easy to set a plan for your life since you  know what you need.

One more thing i want to mention. Don't ever get upset when doing mistakes, it is a way by which you learn the right way. We all make mistakes.
In the past, Thomas Edison  invented something after 8000 trails and after his achievemnts he didn'y say i did 8000 mistakes but rather said "Well, at least we know eight thousand things that don't work."


manal
Title: Re: I feel i have reached the end of my road.....
Post by: nice friend on August 04, 2009, 01:34:58 PM
Off topic:
I hope you don't mind I am posting this en public.
Umair, you are always positive. How do you do that? I mean you never really post here something that is written in a depression mood (like I do).  I can not really express this feeling into words. But I guess you know what I am trying to say.
I am curious about the way you do that.
Note: Other members from this community have this positive (or optimistic) way of life was well.
Look Dore , read the my posts of this thread i sent above :grin ..
========================================
i was looking like an angel and more blessed thal than otherz thalz ..... llike i m one  who dont have any worries and facing nothing that can break confidence ,   i feel down too as other people, although it took long time to say that i face the worries probs and other this kind of things but i think its enough to prove, i dont wanted to post like i posteed above but i did to tell that i feel ups n downs but it doesn't matter, the thing that matter is if i can cop witht these ups n downs or not , that's wat this forum is for, to make you feel better when you feel down , to teach you how to get up and starting walking with life ... nobody is perfect and nobody is in-complete as well , its all about how finely we can discover our self our confidence our strangth and our abilities to survive , all wat we have to do is that we have to do is to find our inner self's strangth , we have to find wat else GOD has given us and wat kind of strength He blessed us with to survive in this world , all we need to have to find a solution instead off stop moving forward and crying that i dont know wat to do , thats wat i have learned ...  i had to proof that i expereince the ups and downs of life as well as others do :grin m  not a superman like sumthing, all i do is to deal with it a smiley face :)  ... ii think m over-reeacting and all is fine now so NO more comment to my side ... :teehee

for the people who think that nice friend is a computer generated greeter who greet's people and always post something positive , nice friend  is a human like you , who always keep trying to not to say anything that cause de-moralisation for other members , but it was necessory to say this all to tell you people that nice friend is a human like you who is also facing lots of probleme he is not someone who is blessed more than you , all that he do is he controle posting anything that he think dis-couraging .... but this time he did this to show that he is going trough the samething things u people do , he's on same way with same probleme , my way of thinking is still the same  " dont think about the thing you cant change , and dont cry for anything if you cant fix that , live happy , stay happy, and always b happy in every condition you're livving " ... i think i have to keep making mistakes to assure new comers that m not computer m a human who is sending them greeting messages :grin :grin ....


@ Manal ,
Thanx Sis, for reallly encouraging quote, encouragement and support that you provide to help get out of this :thankyou2 ... :)

@ all thalpalz
 i reallly appreciate all thalpals supporting messages who made me feel better and taught me not to feel bad and get up and get going , n start geting ride over bad patches ... Thanx alot you all , you're really good palz ...

i hope i didn't say anything again n again int his post and nothing that you can say wrong ... but if you find anything in this plz send me PM i will correct that , and plz when-ever you find anything in my any post then dont hesitate and feel free to inform me i will never mind, infact i will appreciate that if you help me finding out my mistakes bcoze i mm bad at proof reading and re-checking posts , i needd your help in this   , plz help :)

Best Regards
Take Care
Umair :) :whew its a dificult task to Save ur reputation :whew
Title: Re: I feel i have reached the end of my road.....
Post by: nice friend on August 04, 2009, 01:46:02 PM
 :whew :whew :whew :whew :whew :whew :whew :whew :whew :whew
 i dont  know wat i said and how i wrote that much long post  :scratch :scratch :scratch :scratch , its really dificult for me to read and understand my posts bcoze my posts r too long and too dificult to understand for me too :grin ..
Title: Re: I feel i have reached the end of my road.....
Post by: Zaini on August 04, 2009, 04:24:26 PM
Umair,

All you need to do is get busy,look at Maryoom,she went bungee jumping,and i don't know why but i am really feeling excited for her,that proves that thals can do anything,you just have to have the will and belief in Allah  :thumbs

Zaini.
Title: Re: I feel i have reached the end of my road.....
Post by: nice friend on August 04, 2009, 10:05:08 PM
Zaini,
yeah , i m seriously  llooking forward to start doing sumthing and add more activities to my life. i m looking for to not to sit infront of Monitor's screen all the day and use computer time to time a day , and start some physical and mental exercises and activities ... spending all the time on Pc is a boring activity and i have to avoid feeling bored to avoid thinking negatively , i think i have to keep my mind busy in a few more activities .. i will jjoin my family business, the only reason that left behind the delay of  start going there and joining my bro there is power load shedding that is more worsen at the site of comercial area where we have our shops than the area where our home is located ...  waiting for the right weather to go and join them bcoze load shedding probleme isn't gonna fixed till the end of this year and and the minister of this sector is unable to tell when it will b fixed :grin .... i  m feeling excited to hear about maryoo's experiece bcoze it a new path way is open now for thals and happy to hear that thalz are challanging everything that people think they (thals) cant even think of that , now thalz are doing the things those even normal people cant chalange think of that ,, really glad to hear this .......  but i cant go for that :grin bcoze my knees  :grin ....  abt belief , its the belief bcoze of wat i m here , bcoze of wat i m still alive and in good shape , actuly back into good shape ..  m trying my best sis , won't to look back wat happened and how that happened but all the things that happened to has left there marks behind on me and my health , the mark's those will never fade up but i will try to forget looking at those marks and start loking on my aimz n goals to achieve them and to show all the thalz that they can get back in life to every kind of condition and all kind of damages can reverse if they comply with chelation and maintain their Hb level near normal range and to give them hope and to tell them   and encourage them to never think of give-up ... and i will proof this INSHA-ALLAH (GOD's willingly) .. :thumbs :yes

(again feeling to say : plz ignore if it sound bad and if u feel anything appropriate in it  then plz ignore bcoze i never mean/sound to b rude/harsh :grin )

Best Regards
Take Care
Umair
Title: Re: I feel i have reached the end of my road.....
Post by: aysam on August 11, 2009, 03:18:21 PM
hi how is everyone ?
update on master aysam
getting liver biopsy very soon
his iron is still very high 4000
never has his iron gotten down from last year untill today it has been over 2000
his doctor thinks he could alreday have liver damage and if his biosy shows 40 ml he ill stay in hostital for 1 year with a iv intrevein ???
can somene please explaine doctors telling me that they dont know why
maybe the exjade isnt working for him he is on 625ml
maybe its iron overload
maybe false reading all the time
maybe he always has infections wich cuses high iron lveles mmmm
maybe maybe maybe not good enough

results AST 230
          ALT 688
          BILIRUBIN TOTAL 8
CAN SOMENE EXPLAINE what is happeing
is it from exjade is it from to high iron for so long
is exjade not working
to much infections
and if his iron levels show 4000 and been high for 1 year over 2000 can it be liver damage alreday is it revesable
can he have like doctor said over 40 ml
i told doctor that hy we dont use desfral and exjade i read artical from dr ali taher and thats hat there doing if exjade dosnt work alone shhe siad it sounds like a good idea am i the doctor knw
oh yes i told u all about kids i have in my care b4 they are looking for new home for them
everytime i book to go to lebanon somthing bad  happens i am booked for 14 september
and today doctor said not advise to travel
she said if his liver biopsy shows 40 ml meens he needs 24 7 desfral
help me what should i do she said she thinks its noit that much but thinks its nearly there ?\
SHOULD I NOT DO THE LIVER BIPOSY AND JUST GO ON THE 14 SEP AND DO IT LEBOANON
or listen to her i am so confussed
help me is there another way getting rid of the iron like noit 24 7 in hostpital
please advise everyone
i was going to see professer ali taher
ive been saveing for so long for this and evertime something bad happens
should i do the test then leave do u think that the test can be bad with his iron over 2000 for one year
and no 4000
please
Title: Re: I feel i have reached the end of my road.....
Post by: Zaini on August 11, 2009, 04:26:59 PM
Mariam,

How much is Aysam transfusing,i mean how frequently? How much blood does he get in every transfusion,what amazes me is that he is very young to have that kind of iron over load,and how can his liver be damaged,it takes years to build up that much iron.???

I don't know anything about Doctor Ali Taher,may be Manal can tell you anything about him.And why are you doing liver biopsy,is ferriscan or SQUID not available in Australia?

May God bless you and your family.

Zaini.
Title: Re: I feel i have reached the end of my road.....
Post by: Andy Battaglia on August 11, 2009, 04:40:54 PM
Ferriscan is actually based in Australia and is readily available but use on young children is limited because they have to lie still for awhile. It really depends on the child. Dr Taher is a world renown thalassemia specialist and has a very good reputation.

I do agree that Aysam should have 24/7 desferal to clean out his liver. It is hard to say if the high liver readings are solely due to Exjade or if the high liver iron is a factor. But right now, getting the iron down should be a priority.
Title: Re: I feel i have reached the end of my road.....
Post by: Manal on August 12, 2009, 12:13:08 AM
I too agree that Dr. Taher should see him as soon as possible. Mariam did you rule out any other disorder that can aid in this iron overload. ?

manal
Title: Re: I feel i have reached the end of my road.....
Post by: Sharmin on August 12, 2009, 02:13:14 AM
Mariam,

I hope that Aysam's iron levels decrease very soon.  I agree that under the supervision of a good doctor exjade/desferal combination can work wonders.  I hope that the docs have his levels under control very soon. 

Sharmin
Title: Re: I feel i have reached the end of my road.....
Post by: aysam on August 12, 2009, 04:31:40 AM
we have ruled out every other illness nothing
its just his body and exjade cant fight and get rid of the iron like all others
he is a dificult case as they say
thankyou all for all ur support i am going to ali taher 17 sep ill be there and i will keep u posted
yes ali taher is adult but colegge dr suzzana kusa is there so same thing i suppose
its really scarey
i hope all gose welll
im afraid its too late for him.
he looks sick dark couler and just not like him active
Title: Re: I feel i have reached the end of my road.....
Post by: Sharmin on August 12, 2009, 05:07:50 AM
Mariam,

He is young and with the right treatment he will recover.  My prayers and best wishes are with you.  Take good care,

Sharmin
Title: Re: I feel i have reached the end of my road.....
Post by: aysam on August 12, 2009, 05:32:16 AM
thanks sweety
Title: Re: I feel i have reached the end of my road.....
Post by: maha on August 12, 2009, 09:50:12 AM
Mariam
The iron level does come down quickly with IV desferal. One of our members ( Life is beautiful ) had experienced a drop from 4000 to 2000 in just three months. His daughter was given 60 hours IV desferal every time she was booked for transfusion. Aysams ALT is very high and I am surprised he is on a high dose of 625mg. What is his weight? Wishing the best for your little boy

take care
maha
Title: Re: I feel i have reached the end of my road.....
Post by: aysam on August 12, 2009, 01:04:30 PM
hes weight is 15.8 kiilo
he gets 232 mls of blood he gets it every 4 weeks
i spoke to dr suzzana at chronic center in lebaonon
she works under professer ali taher
and she said not to do the liver biopsy he is to young and she also said that they have the mri special ma=chine wich she will book him in to get done as soon as i get to lebaonon and also she promissed she will get his iron down ,


what do you all think he is only 3 years and 2 months old oh my god i am so afraid im leaveing on the 17 september to go i hope to god im makeing the right desseion
Title: Re: I feel i have reached the end of my road.....
Post by: maha on August 12, 2009, 01:42:38 PM
Mariam
Aysam is getting nearly 40mg/kg of Exjade. Usually when the ALT rises the dose of exjade is either reduced or temporarily discontinued till the ALT comes down.There is almost a month before you leave and Aysam will have a transfusion during this time. I feel it would be good for Aysam if IV desferal could be arranged continuously for three days. You could discuss this with your doctor.

Andy
Little Z was asked to discontinue Asunra for a week when her ALT reached 231, and she was on the 30mg/kg dose. Aysams ALT is over 600 shouldn`t he be discontinuing Exjade altogether for a while.

maha
Title: Re: I feel i have reached the end of my road.....
Post by: aysam on August 12, 2009, 01:49:26 PM
you are right his alt is nearly 700 high but the doctor said that it dosnt matter and nothing is getting damaged i asked about iv desfral she said no she dosnt think its neccasary ???? see why i am levaioning to lebaonon when they saw the results of alt they showed me its nothing its ok m
he will be fine i swaer she saids i have seen higher alt so aysam will be fine ????? i told her im going to lebaonon u know what she said
are u going for treatment ? she asked i said no i said a holiday she said u know that lebanon have bad blood there he could catch something its btter i treat aysam i laughed .
so u see whats happeing i im in privet health fund so everythime she gets big money from me i acctuly think they are using him as a guinne pig to see what will happen
what do u think is the levels at this rate doing any damege
Title: Re: I feel i have reached the end of my road.....
Post by: Zaini on August 12, 2009, 04:28:59 PM
Mariam,

I think you should discontinue exjade for a while,my daughter's SGPT reached 231 and her doctor has already discontinued her exjade,we'll wait for a week,repeat the test and then we'll see what are the levels,700 is too much and Aysam is so young,can't you change your doctor while you are in Australia? One of our members Smurfette is also in Australia and she is managing herself very well,you can PM her and ask her if she can guide you to a better doctor.

Good luck,

Zaini.
Title: Re: I feel i have reached the end of my road.....
Post by: mohamed on August 13, 2009, 03:22:23 PM
hi,
    i think he had to:
        a) visit Dr Taher
        b) stop exjade
        c) go on IV desferal
        d) consider causes of this acute hepatitis due to infections:  Hepatitis A(from food) and B virus(from contaminated blood)
        e) what about fever, anorexia , malaise and appetitie?
        f) what about differential complete blood count? and retics?
        g)what about bilirubin details (direct and indirect)?
        h) what about LDH?
        i) finally what about CT scan?
thank you
Mohamed
       
       
                    
Title: Re: I feel i have reached the end of my road.....
Post by: aysam on August 13, 2009, 03:49:07 PM
.o.m.g mohamad stop u want some more shocking news u will never belive what happen my hussbasnd called and told the doctor
we are not going through the liver biopsy

we are takeing our son to lebaonon w
she wasnt happen at all u know what she said
she says i have to put aysams exjade up from 500 to 625 ml
my hussband said are u ok u put it up 2 months ago
shows u the hematoligist really knows what she si doing she said no its got 500

on my papper work hello u wrote the script for us doctor mmm?
then she said oh now i know why his liver test are redaing very high
help me man whats going on is this like a conspiricy or is my son a guine pig
Title: Re: I feel i have reached the end of my road.....
Post by: aysam on August 13, 2009, 03:50:55 PM
mohamad we asked to considir the ct scan intead of liver biopsy she said his to young and she advise to go to lebaonon she said they hae bad blood banks there walla
thsi si what the dioctor told me
Title: Re: I feel i have reached the end of my road.....
Post by: aysam on August 13, 2009, 03:57:45 PM
sorry mis type she advises NOT TO GO TO LEBANON she said the have bad blood bank
Title: Re: I feel i have reached the end of my road.....
Post by: Manal on August 14, 2009, 12:26:51 AM
hi Mariam

I suggest  that you can re-examin the blood bag again on your expense if you will need to transfuse Aysam in lebonan. I don't say that they have unsafe blood cause i don't know. But if i were you i will do this to eliminate any concerns


manal
Title: Re: I feel i have reached the end of my road.....
Post by: nice friend on August 14, 2009, 11:16:55 AM
Mariam Sis ,
Wishing you & Aysam best of health and good luck , may ALLAH (GOD) bless him with the best of everything Ameen ...

lots of best regards
Umair