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my father has low grade mds what should i do?

Home forums Patient Message Board my father has low grade mds what should i do?

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This topic contains 22 replies, has 10 voices, and was last updated by  Peter Buss 3 months, 3 weeks ago.

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  • #28792

    ivy tumacas
    Participant

    what does lowgrade mds mean?

    #28795

    LeAnn Duke
    Participant

    Ivy,
    My name is LeAnn and I have low risk MDS. Not sure if the Drs terms would be the same or not. my MDS is low risk because for the time being my red blood cells are involved and the white blood cells and platelets are not involved. I also have a low percentage of cancer cells(blasts) in my blood (which every one already has) and as long as my blasts stay low, it isn’t necessarily called a cancer but more of a syndrome (that’s my interpretation of it as I understand my Dr.) I have what is called Refractory Anemia with Ringed sideroblasts. So that is Red blood cells that are not producing as they should or dying before they reach maturity. They are not carrying as much oxygen to my organs as I need so I have rapid heart beat or as I like to call it, hard heart beating, because when my hemoglobin is low and with exertion I feel like I have run a marathon when all I did was walk across the room. That’s the genreal description for the refractory anemia. The ringed sideroblasts means that I have iron deposits around what few RBCs that do live and they are abnormally shaped. In general there isn’t enough of the RBCs and they aren’t living long enough to keep my hemoglobin count where it needs to be. I have had dizzy spells and feel lightheaded and ezperience general fatigue and just don’t feel like doing anything. I was diagnosed in June of 2015 and the Dr. started me on Aranesp/Erythropoietin injections. WE did those injections for a little over three months, one shot every three weeks. He told me when we started that they might work, but they sadly did not. Now I am tranfusion dependent and only have to have transfusions every 3 1/2 – 5 weeks. For MDS according to my dr if we can keep the transfusions to one per month I will stay in the low risk category. He says he has patients who have been doing transfusions for years and have done well. Since I have the ringed sideroblasts that has made my iron levels higher than normal. So with the transfusions I will soon develop what they call iron overload and have to start on a medicine that will pull the excess iron off my body because too much iron can be hard on the heart and liver.

    My Dr. reminds me often that MDS is an unstable disease, which I have taken to mean that it can change at anytime. I do know that it is unpredictable. I feel different after every transfusion. Not in big ways but the symptoms come and go differently. In general I feel much better after the transfusion and my energy levels are much better and some days I feel like there is nothing at all wrong with me. So the benefits of the blood are great! My husband and I have recently taken a different look at the word unstable and thought that perhaps unstable can also be taken in a good way because, for instance, this month I have gone for 5 weeks before needing to go back for blood. My hemoglobin level usually does not come up beyond 10.4 or 10.6 with blood. So this time it only dropped to 9.2 in 3 weeks. Normally it drops into the low 8s or into the high 7s. I can usually tell when it is dropping because of my heart pounding or hearing my heart beat in my head and ears when I am just sitting still.

    If you know what stage your dad has been diagnosed at I would be interested in hearing. I have not yet found anyone who has exactly my same diagnosis so some of what i have written my not apply to your dad. But if so and you feel like writing I will be happy to correspond. You can read all sorts of things on the internet that can scare you and sometimes trying to find others out there with the exact same thing can be almost impossible.

    I recommend finding a good hematologist/oncologist if he doesn’t already have one. This is not all that common of a syndrome from what I understand and there are several different stages and types of it. I wish you all well in your journey and if I can be of any assistance please let me know!

    #28829

    vishal srinivas
    Participant

    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.

    #28830

    LeAnn Duke
    Participant

    Vishal has your doctor considered or recommended a drug called Aranesp or erythropoietin? It supposed to help the bone marrow to produce more red blood cells and for some it works well. I did not respond to it but you might ask about it. Here in the US it is very expensive so I don’t know what the cost would be in India. It sounds like we have about the same type of MDS. You are much younger than I am. I am sorry that you have to deal with this at such a young age. Stay in touch and let me know what your doctor says about the Aranesp injections. I took them every three weeks for three months but as I said they did not work for me.

    #28832

    vishal srinivas
    Participant

    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.

    #28833

    LeAnn Duke
    Participant

    Vishal, this was definitely a shock for my husband and I to hear that MDS is not curable except for having a BMT that can extend our lives. Our. Holden are all grown and we have grandchildren that I would love to watch grow up. At this point I don’t know of anything for low risk MDS patients other than the transfusions. My doctor also says the transplant brings on too many risks because at this time only the red blood cells are affected. With chemo and BMT it will bring the other cells into problems before the disease affects them and the risk of chemo and the transplant is greater than than the risk of the disease. My brother in law had a bone marrow transplant for multiple myeloma and he said that basically they give you chemo to kill all the bad abnormal cells and that will affects everything, the WBC and platelets as well. The chemo takes your immune system down to practically nothing and then they bring you back with the transplant. I have had nurses that worked with transplant doctors that say it is really hard on the body. The disease will have to progress before any doctor would consider a transplant. It is definitely hard to go through, much harder than what we are facing right now. For me the blood helps me to feel better during the month. It is rather unpredictable and my doctor says the disease is an unstable one but I have seen that some months are better than others. Can you function ok at your job when you have the transfusions? How low does you hemoglobin usually drop before you go in for your units of blood? I have only had to have 2 units at a time and have been doing this since June 2015. So far my ferritin level is at 927 as of November. They will check me in March to see how high the iron is then.
    Now I will mention this to you and let you perhaps do some research. I recently talked with an elderly woman who’s husband had a higher risk MDS. He was 72 when they diagnosed him. He went through two years of chemo and he didn’t get any better or any worse. Since the major hospital called Vanderbilt in Nashville, TN doesn’t do transplants on people older than 70 his only choice was was to continue chemo treatments. But they had been doing their own research as well and there is a hospital in Houston, Texas, called M.D. Anderson Cancer Center, who is on the cutting edge of research for different kinds of cancer and they have specialists who deal with MDS. This hospital does transplants after the age of 70 so this couple travelled there to have a consult to see if they would consider her husband. They searched for a donor for him and while they waited, the doctors suggested a clinical trial drug for him to try, while he waited for a donor. That was 7 years ago and he is still alive, in his 80’s and doing well. He had one transfusion when he got to Houston and they started him on the medication and he hasn’t had another transfusion since then. She said his side effects were very minimal, no nausea, vomiting or usual chemo side effects. He has a few minor skin issues but that is basically all he has trouble with.

    I have written to a lady on this site named Beth Pilot who has MDS and hers is high risk as well. She has had the transplant and has some issues now with GVHD (Graft versus Host Disease). She would be able to tell you more about her experience. You can look at this site and find her name. I know she would be willing to answer any of your questions if she is feeling well enough. You might have to wait a bit for her to feel like responding but she is a year out from her transplant.

    Do you have a sibling who is a match for you when transplant time comes? I have a twin sister who has sweetly offered to be my donor.

    Vishal, I know it can be discouraging to plan for the future and then find out that plans may have to change because of health issues. And it isn’t easy when. You don’t feel like putting one. Foot in front of the other. But I urge you to try to stay positive and find out all you can about this syndrome. Even though there are days I don’t feel like doing anything I try to just take one day at a time. We don’t know how long our lives will be in even the best of circumstances so knowing I don’t have tomorrow promised, I am happy that I have today and try my best to be joyful and do meaningful things for today!! I can hope that while I am dealing with this syndrome or that by the time I need the transplant there might be a medication that can reverse this disease. I pray that God will give you the courage and physical strength you need to live the life you want for yourself and be able to sustain your health while research is being done. Feel free to contact me anytime. It definitely makes it easier to talk to someone who totally understand what you are going through and I do understand!!! Hope you have a good day tomorrow!

    #28834

    LeAnn Duke
    Participant

    Vishal, one other thing. My erythropoietin level was perfectly fine as well, but the one thing that EPO does is increase RBC in the bone marrow. Athletes take it to increase their performance levels. So it might be worth your while to talk to your Dr again and see if he will research it a little deeper or consider trying it on you to see if it could work to cause your bone marrow to produce more RBCs. As I said earlier we tried it for 3 months and then they did a blood test on the reticulocytes (baby blood cells) to see if there was an increase. If it is working there would be a considerable increase in the number of baby RBCs being produced and it might mean that you didn’t have to have as many transfusions which might help your iron overload. Another question for you – What is the name of the medicine you take for chelation? Do you notice any side effects from it?

    #28869

    vishal srinivas
    Participant

    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..!

    #28870

    LeAnn Duke
    Participant

    Hi Vishal, I’m glad to hear from you! I’m glad your spirits seem to be a bit higher than your last post. This is definitely a hard disease to understand. It can be so unpredictable at times even when we get the blood transfusions. I feel different each time I get blood. Some times it seems like I must have gotten super power blood because I feel really good. But this transfusion was different. I have felt more tired this past two weeks since the transfusion and find that I feel more heavy in my legs and arms than at other times.

    Thank you for the information on the Asunra/Exjade. I haven’t know anyone else who has iron overload and who is on the medication. I will. Know what my Ferritin/iron levels are when I see the hemotologist in March. My hemotologist is about 1 hour and 45 min away so he and a local Dr close to me are working together so I can get my transfusions closer to home. I go to the local Dr and they check my blood and then I let the hemotologist know the level. The hemotologist calls the local Dr and they set things up at the local hospital for me. It sure helps not to have to drive so far since it is an all day thing to get only two units. But I am thankful that I can do this closer to home.

    I have also read information about wheat grass for iron overload. I am interested in trying it especially since I am not yet taking the medication for high iron. I think it must be good for a body as I have heard of people using it for many years for good health. I believe it can be bought in capsule form and I plan on ordering some soon. I did read of one man who took it for quite some time and it did raise his hemoglobin levels for a good period of time, but then there were other difficulties, perhaps an illness that just helped the MDS to progress. I’m sorry I can’t remember exactly what happened to him, but he was more high risk and as the disease progressed he had other problems and passed away.

    I don’t mean to sound negative but when bone marrow is involved and there is a genetic cause for failure, there may be some things that can help to make us feel better for a time, but I don’t think that chemo drugs are the answer to cure this particular type of disease. I believe they can slow the progression or perhaps help in the body utilizing new stem cells but the body also suffers in other ways from the harshness of chemo. I have hope that when I get to the stage where I need the transplant my twins stem cells are just like mine and will work just like mine did when they were healthy. I am frightened of the GVHD as a side effect of the transplant. Most people that end up having GVHD say it is definitely not as bad as how they felt with MDS. Of course I am low risk and they were all high risk and I haven’t suffered with it as they did. But the idea of those side effects which seem almost as debilitating still scare me. I am lucky that I don’t have a job outside of my work at home so I don’t have to get up early or produce for a boss. I can rest when I want and my husband is very understanding of this condition and helps me so much. I am glad that you have your parents to help you and hope your boss at works understands your fatigue and weakness when you are feeling bad.

    As we communicate you will find that I am not a dreamer but a realist and like to face facts. I am also a Christian and have faith that there is a reason for everything that we face in this life and that God is in charge of life and death. That being said I pray that God will heal me if that is His will. I believe that can happen! So I pray in faith and according to His will. But I will also do my part and seek all the medical help I can and will look for natural aids as well. That is my part and I will leave God to do His part!

    Thank you for staying in touch and I will look forward to hearing what you find out from your doctors and how you are doing. You are a very brave young man! Stay well and I hope you have a bountiful New Year!!

    #28882

    LeAnn Duke
    Participant

    Vishal, I thought I would let you know I am going to start using Wheat grass slowly at first to make sure I can tolerate it, but to see if it helps my iron levels. Will let you know how it goes. Hope you are doing well today!

    #28889

    vishal srinivas
    Participant

    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.
    http://www.mdsbeacon.com/news/2009/06/02/study-shows-iron-chelating-properties-of-wheat-grass-juice-asco-2009/
    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..!

    #28890

    vishal srinivas
    Participant

    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 ?

    #28901

    LeAnn Duke
    Participant

    Hi Vishal,
    Thank you for sharing your heart!!! I know that this must be so difficult for you especially since you had the chance to come to the US for your job and now because of MDS you cannot come. I am sorry that this has happened!!

    You asked where I am from and what I do when my husband goes to work. I live in the Middle Tennessee area of the US and. We live in the country as opposed to city living. It is a beautiful state and with the many seasons it is beautiful to see the changes of the leaves in the autumn and the beautiful flowers blooming in the springtime. I am thankful that at this time I am able to care for myself. I have good days and not so good days but those not so good days don’t come so often and I can just lay down and rest during the hours that he is gone. Our children are all grown and only one son lives close, but he works and his wife is a stay at home mom with an infant and a young two-year-old, so she has her hands full. So I cannot depend on them to care for me. I have friends who have told me that when I need help to please be sure and let them know and they will do what they can to help me. But I am pretty independent and like to do things for myself, and as I said I am still able to do that.

    I know the frustration of the heart beating in your ears and in your head. There is a swishing sound when I bend over that reminds me even when I might be feeling ok physically that something is not right. Often I feel my heart beating in my stomach as well and when I am trying to sleep at night it is very bothersome. I cannot go to sleep because it is beating harder than normal. And sometimes it beats hard for no reason. I can be just sitting very still and be resting and my heart begins to pound very hard and fast and will do that for 10-15 minutes and then it goes back to normal. The lower the levels go the harder my heart beats and the more out of breath I can get. It is a very strange and frustrating feeling especially when I am doing nothing. Sometimes just walking outside my house to my mailbox will make my heart thud, thud, thud, just as if I had just walked a brisk mile walk!

    I understand very well about having to feel dependent on another person, and feeling guilty about causing someone else an extra burden. It doesn’t seem fair, does it? I am not use to having someone wait on me or asking for a lot of help. Often I feel like I am rested until I get on my feet and then I feel as if my feet and arms weigh 20 pounds heavier than normal. And then I just want to sit down again.

    I have also heard that the more acidic a body is the better the chance that cancer can take over and the more alkaline a body is the less chance cancer has. It has actually been difficult for me to have any appetite for food. I rarely can think of anything that sounds good to eat. I don’t crave any foods and cooking has become a real chore because nothing sounds good to eat. I don’t mind eating more alkaline, but it is just hard to find anything appetizing to eat anytime!! The funny thing is that I am not losing any weight. I still eat what I want and when I want. I know that doesn’t make a lot of sense: that food doesn’t sound good and I don’t crave food, but that I eat what I want. It is hard to describe because I used to like things like vegetables and chicken but now they don’t taste the same and when I think of cooking them I just don’t feel the same about them because of the way the food tastes. It’s not just the tast of the food, but I also tire quickly when I have to stand and cook and that doesn’t help anything either.

    I have started the wheat grass capsules and have worked my way up to 6 capsules a day. I will be anxious to see in March if my iron levels have decreased any at all. As I said, I haven’t started on ExJade yet so if I can do anything natural that will help hold that off a while I am willing to try it. My husband and I do what we can to stay healthy and we also do probiotics. Mainly we drink something called Kefir. Have you ever heard of it? It is good for digestion and the gut. We have done this for many years so I know of the benefits for me as well as my husband.

    I also crave ice most of the time. They say it is a symptom of anemia. My mouth stays dry all the time and I carry a cup of ice with me almost constantly!!! Do you notice that you have that same symptom?

    Vishal, I hope this might help you a little. Before I stop posting tonight I wanted to say that I am a mother and a grandmother and so I can tell you that I am sure your mother would have it no other way but to help you all she can. It is the most natural thing in the world for a mother to want to care for her child when he is sick. I know that I would do it gladly and easily for any one of my children or grandchildren. And though she might get frustrated like you do sometimes, I think she will probably even not mind when you snap at her or your dad out of your frustration and anger at your situation. They know you are angry and sad and frustrated and scared and feel helpless. They know when you don’t feel well that those feeling are even more intense. A mother knows!! If you have not already done so, let me encourage you to share your feelings with them and let them know you don’t mean to take out your frustrations on them because they are trying to help you. I know they love you very much and it hurts them to see you feeling angry or helpless or frustrated. I know as a mother, your mother is probably trying to find any way possible to help you to first feel better and second to encourage you to fight this in any way possible! And no doubt your father feels the same way!! So as hard as it is, let them help you in whatever way they can because it is a parent’s joy to help their child!!!

    I am praying for you as well that your symptoms will become easier to handle and that you can cope with this disease. I know that as I go through this I have seen already that there are so many people out there with worse diseases and situations that I am in, so I am trying to use my situation to help as many people as I can.

    God bless you as you learn to deal with this blow that life has dealt you!

    #28985

    LeAnn Duke
    Participant

    Hi Vishal, Just checking on you to see how you are doing? I was wondering if you have started growing your wheat grass yet? I am due for another transfusion probably tomorrow or Tuesday so I though I would touch base this evening to see if you are doing ok.

    #29223

    vishal srinivas
    Participant

    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 http://facebook.com/vishal.srinivas.
    Hope god gives strength to us !

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