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Viewing 6 posts - 1 through 6 (of 6 total)
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  • in reply to: my father has low grade mds what should i do? #29223
    vishal srinivas

    Hi Mrs.LeAnn, how are you. Sorry it has been long time , actually i forgot my password and username to access this site. I was a bit lazy to reset the password and all. Hope you r feeling better and had good days all this while. I see from your last post that you were going for a transfusion hope that has gone well and i would like to ask you if you had checked your Iron levels and hope it were under control.
    Thanks for your previous posts i know you understand the feelings a parent towards their children. I am sure your words do express all the feelings of a mother towards her kids especially when dealing with sickness.
    Last month January hasn’t been that good for me. I had to go for a couple of transfusions it took me totally 6 bags of blood transfusions last month at regular intervals.
    Actually i usually go for blood transfusions for every 15 days but ending with december month of last year to the beginning week of January this year i had waited for more than 15 days and that resulted in very lower levels of my blood. The count went down to 3.63 Hb. So i transfused two bags of blood on 4th Jan and it didn’t increase as expected ( usually , when we take a pack of blood transfused it is expected to increase by 1 unit ) meaning from 3.63 Hb i though it should increase by 2 – units. But unlike to my logic , it didn’t increase as expected it only increased by 1 unit that is from 3.63 it increased to 4.5 only. That was shocking for me I thought some thing seriously went wrong ( i was just trying to recollect what did i do wrong , and i was trying to find answers for this unlikely thing ) very soon after a week, i took another two packs of blood transfusion and even at that instance it didn’t increase by expected figure of two units ( for a 2 packs of blood transfusion of red blood cells ). then after applying a lot of thought towards this atypical thing i thought , its because of low blood counts. What i presuming is when ever there’s a low blood count, the rate of increasing the blood per transfusion is less and similarly in my case the rate of decrease of blood levels ( especially Hb ) per day is more when the blood count is lower like bleow 5 .
    What i observe is when ever the blood counts are higher that is beyond 6 or 7 Hb that decreasing rate per day is around 0.1 per day unlike the days when the blood count goes lower than 5 decreasing rate per day is high approximately 0.5 per day. This was my analysis over the data that i note down for every transfusion that i had till date.
    From now on i’ll try to maintain the higher blood levels, and see if this is going to work in observing the lower decreasing rate of my blood levels per day.
    I would like to ask you Mrs.LeAnn that how often do you go for transfusions and what blood levels do you maintain. What does your doctor advice you for about maintaining the blood levels.
    As per my doctor i was told that i go for blood transfusions symptotically when ever i feel the symptoms like heart beat palpitation, hearing the sound in my ears or when i feel the severe shortness of breadth. All this is because i have higher Iron levels in my body . But i think i am having to suffer and compromise on my day to day to life style for waiting until i feel those all very worse symptoms.
    By doing this way, i am only having to see more number of transfusions per month which is very worse thing to happen.
    I do not understand how and when i will get over this hurdle of my life, i don’t know , how my life is going to be in the coming days and how long will i live. I can’t discuss the actual intensity of my health condition to any one at home ( with my parents, i pretend before them as if its just another bone marrow depression and not as a big thing as a pre-leukemia, just to keep them from breaking down ) nor my relatives. Back in my home & family no one is aware of how worse this MDS is because there’s very less awareness about it. No forums on internet ( from India ) nor websites like this nothing.
    I don’t know why god has chosen me to deal with this, i don’t know what his thoughts are for me. I hope and pray that he gives me strength and faith to live and become strong and lead my life , take care of my parents. I haven’t seen any life at this age of mine. back in India we lead a life as if on racing track all through the childhood and teenage. The race for education while in schooling then in college /university and then Job hunt all we are leading a very typical stereotype life style in common the aim of every young guy especially from a very middle-class life style is same to finish his graduation get good grades and then secure a good job and take up the family responsibility .
    I was one of such guys i don’t even know how i lived all my life of 27 years till date. when i turn back and see my past life i can only see that i was all the time in race against time to grow up big and take up family responsibility , this is what my parents taught me , this is what they expected from me. It is the same story in every middle-class family living in India. But , this is the age , now that i am settled in my life had good education and secured a good job which brings me great opportunities, when every one of my age is living their dreams having settled in their life. I , an unfortunate human being , sitting down in my room around four-walls all the time.

    All my friends and relatives in the beginning days used to visit me often and talk about how am i doing with my health , now days passed and slowly slowly i see my friends and relatives visiting my home less often . Feel alone at sometimes seeing how my life has changed all of sudden in just a span of few months.

    I think i should stop it here. I am getting emotional . I hope you don’t mind , about me speaking out my heart and emotions i feel. which i am unable to share with parents ( just scared , if i do so , they would break down seeing my agony ) . I was just thinking to add you up in my Facebook , if you wouldn’t mind , just to better stay in contact over a message/chat away whenever needed than the message board ( i might forget the password or username again ) . Here’s my facebook id
    Hope god gives strength to us !

    in reply to: my father has low grade mds what should i do? #28890
    vishal srinivas

    LeAnn, i don’t know which part of the USA you belong to , how do you spend in your time through the day after your husband has to leave for work. Is there any one else at home to take care of you like your children ?

    in reply to: my father has low grade mds what should i do? #28889
    vishal srinivas

    Hi LeAnn, belated new year wishes to you and your family. I hope you were doing well all these days. I had read from your last two posts about how you are feeling low even after having blood transfusions. Feel sad. Age factor also matters. This time before i had transfusion , i was feeling very weak and fatigue, almost energy less. Just one day before the transfusion was very horrible this time somehow. I have this problem , when every my blood levels go low i start to feel my heartbeat through my ears and that sounds more clear and clearer when the levels keep going low. And this make me really irritating. It was very irritating last week and my parents did support me all way through, i feel very lucky to have such a caring and understanding parents ( because they just bear my irritation, when i go helpless looking at myself ill-fated and yell at them on certain things, at some times with my mood swings ) and some times feel very un-lucky and a unfortunate kid of my parents to have them serve me at their old age, perhaps i should be taking care/serve them now.
    I am glad to know that you have explored on the Wheat grass the boon and bane about it. Yes you can try Wheat grass in the form of capsules (that’s available ) . Back in India, i have this wheat grass available in powder form. So i am using that for now. But i am planning to grow the wheat grass and consume it rather that in the form of its extracts ( either pills/ powder form) .

    I have come to know that, having a fresh Wheat grass juice works way better than an other form available for better results especially for people like us who are in extreme need of blood substitute ( blood transfusions ). Wheat grass is a blood builder and purifier.

    I am also reading on the Diet in case of disease like MDS ( Pre-leukemia /leukemia )and especially diet also plays an import role in managing/curing such disease there are studies/research that say so. It is read that, the cancer cells also called as free-radicals have lack of proper oxygen content in them which make them go running in your body direction less and causing problems and more so such kind of free-radicals get their help in the acidic environment. Our body has a parameter called pH, this measures our bodies acidic /alkaline levels.

    Assume if your food intake is acidic in nature the pH parameter reaches lesser number towards ‘ 0 ‘ which is problematic on the other side if the food intake and your body is alkaline in nature then pH levels go rise . the Median/ the right level of pH is 7.3 ( i suppose, i read it but don’t remember exactly ). So its ideal to maintain our pH level above 7.3 -> that is to be alkaline.

    To maintain a alkaline pH level , the primary factor is your diet, this alkaline level/environment of your body helps in detoxification and evacuating those free-radicals from our body making it an environment which is less or no suitable for these free-radicals/cancer building cells. A very simple example for alkaline diet is fresh food , less cooked/ deep fried, more of vegetables and fruits and less/no non-vegetarian.
    You can please go through about reading on Alkaline diet and how it helps in managing such diseases. Things like this gives HOPE ! Doesn’t matter how big or trivial that it may be. We shall do our every bit in fighting it, never know which can work our way. More over being in ” low-risk ” category is a gods choice, leaving us a little hope to clinch over this if we are generous and he’s kind on us. I am fighting it in every possible way, for myself and most importantly for my beloved parents. I ask god this one chance in my every prayer.

    And yes about my work, i was a very energetic one at work and had got my share of recognition for my work over last two years in form of awards and certificates . I am very simple person, and always loved my work as a programmer. In fact, my boss/mangers had good impression on my work and they had offered me onsite opportunity at my client in USA, Ohio. I was there in Ohio, at my clients work-place in the year 2013. I am Business travel visa holder for USA. Recently , back in the year 2015 January i was proposed for H-1 visa to work in USA for my same client and suddennly , this unfortunate thing happened in my life, i came across this disease in April and i went on suffering it with improper diagnosis until November month of last year that’s when it got diagnosed as MDS . Getting an onsite opportunity to work in USA is very fortunate thing to come across in ones life, working in India. I got such an opportunity my way and i lost it because of my health condition. Bad luck ! Well, that’s life.

    I’ll end my post here, don’t know just went on writing out my heart. Just before ending following are the links to the sites talking about Wheat grass.
    there’s also a case study in one of the threads in MDS Beacon that i found , he was from Geneva and also low-risk MDS patient and found some good benfits using Wheat grass ( Though he used it , he isn’t quite sure it was only because of wheat grass alone, it was mentioned that , he was also using lenalidomide a medicine along with wheat grass and says’ he doesn’t know really which has helped him but he’s now transfusion independent and hemoglobin levels now are 13.5 itseems. ) But he says in the end that he’ll not let go off his habit of consuming Wheat grass. Have a nice day..!

    in reply to: my father has low grade mds what should i do? #28869
    vishal srinivas

    Hi LeAnn, thanks for all the explanation it really means a lot, especially appreciate your efforts in making me explain the things. Yes, i am exploring on many things about this disease back in India like alternative medicines ( like Ayurveda, Homeopathy etc ) available. And yes , i hope the research in this area of disease and its management should be improved and i hope one day it does so , at least for the sake of generations coming up. About your question to me, on the medicine i take for iron chelation, I use ASUNRA – 400mg ( 20mg/kg body weight) its from Novartis labs and i guess this medicine is available as Exjade in countries outside India. I have also read about this medicine in MDS Beacon website and have some good things to read in connection with Iron chelation and effects of Iron overload, like reducing the iron overload from ones body helps in being transfusion independent to an extent by reducing the number of transfusions required for given time period. side-effects / after-effects per say i didn’t experience or have much difficulties just happen to have my stomach upset some times after taking the medicine. Apart from that i didn’t experience much of the after-effects. And as part of Iron chelation , i started reading over the internet and other websites like this ( MDS Beacon etc ) and found that , there’s a herbal medicine , that can act as Iron chelator,naturally, and that’s Wheat Grass juice/extracts.
    I have also read some interesting things and research papers about the Wheat Grass , you can please look through it over the internet and find some interesting facts about this natural herb, i also came to know that its called as green-blood because of the chlorophyl content in wheat grass, and the molecular structure of it matches or is close to that of hemoglobin ( which has Heme ). have a good day..!

    in reply to: my father has low grade mds what should i do? #28832
    vishal srinivas

    Hi LeAnn feel glad to see a forum or message board like this to share the thoughts . I was really feeling alone until yesterday considering my health condition and not knowing about this group to share words. my Dr did discuss with me about EPO ( ERYTHROPOITEN ) injections and I have gone through a blood tests to find my EPOlevels and found that I have more than sufficient and thus would not need the injections. My kidneys do produce the EPO but still my RBC count doesn’t improve. I am just left with the choice of blood transfusions and iron chelation as I have iron overload due to multiple n continuous transfusions. I am unable to sit like this and want to find a way out of this. I even discussed about bone marrow transplant thing with my Dr . but he said it’s not adviced for my condition as I am at very low risk stage . though he admits that BMT is the only cure for this MDS but he says its big thing to think after at a situation in which I am considering the risk factors in going through BMT. I don’t know what are my options. I really would like to talk to the people who have gone through Bone Marrow Transplant and understand the process and life after the transplant. Back in India there’s a very little awareness and support forums/ groups like this to interact with similar ppl suffering like us. And yes , Thanks a lot for your thoughts , yes I am a young guy just 28 yrs old and I am cornered by this MDS in my life. I don’t know how to keep up with my spirit n lead this life , I am only son to my parents n they are taking care of me now at the age of 60 yrs . this is the time for my parents to rest having worked hard all through their lives.

    in reply to: my father has low grade mds what should i do? #28829
    vishal srinivas

    Hi LeeAnn Duke,

    This is vishal from India, Hyderabad. I have been recently diagnosed with MDS – RCMD ” Low risk ” stage. with 1% blasts ( as per the Bone marrow aspiration readings). and other cytogentic , Fish panels for MDS showing all the cells to be normal. Currently i am transfusion dependent and typical experience same symptoms of fatigue, heart beat palpitations when ever my HB counts are low. Otherwise my WBC, Platelets counts are running normal as of now. I happen to take 2 to 3 units of blood transfusions every month to keep my self up and doing my stuff on my own. I have been told by my doctors ( Hematologist, in India ) here that there’s no medicines for ” low risk ” MDS patients other than Blood transfusions and keep checking Iron overload specs. right now my iron levels are overloaded ( 1541) so i have been put on Iron chelation process by taking tablets. I was initially happy to learn that i have ” low risk ” MDS but later i was shocked to understand , though its low-risk , there isn’t any medicine or solution to this very typical problem. I am 28 years old software engineer working for company in India, and always had many goals towards my career and profession but with disease i feel very depressed. Feel depressed to know that there isn’t any medicine for this disease at such early stage, in such a modern world . How pathetic it is . Please let me know if there’s any solution or alternatives for better living in such situation.

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