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My MDS: It’s Fatigue Again …

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Published: May 14, 2014 3:39 pm
My MDS: It’s Fatigue Again …

Fatigue in my opinion is always an excellent subject matter for a column, be­cause so many of us MDS patients are experts in the various aspects of fatigue and its annoying and bothersome symptoms, which are often as­so­ci­ated with a low hemoglobin level.

The Mayo Clinic defines fatigue as follows:

“Chronic fatigue … is … profound. It’s a nearly constant state of weariness that develops over time and diminishes your energy and mental capacity. Fatigue at this level impacts your emotional and psychological well-being, too.”

Yes, that’s it. I absolutely agree with this definition.

All well-informed MDS patients, all the medical specialists, and all the literature give you mainly three prac­ti­cal pieces of advice for daily living when suffering from fatigue.

The first is to learn to be more in tune with your body.

The second is to be active and positive.

The third is to simply move.

I definitely feel better when I follow these pieces of advice, but I cannot force myself to follow them all the time. Can you?

These are wonderful pieces of advice, but very often only of theoretic value. It’s as if you ask a phlegmatic character to be spontaneous. It will work very rarely to completely develop new behaviors that supersede or superimpose themselves on existing behavioral patterns.

I am going to share with you how I feel with my fatigue and how I try to cope with it.

When I am fatigued, my brain is still working perfectly, unless my hemoglobin level is below 8.0 g/dL.

If it falls below 8.0 g/dL, however, I have difficulties doing simple calculations. Here is an example: My hus­band and I sometimes play Scrabble in the hospital cafeteria while we are waiting for the blood bank to prepare the transfusion I receive in the outpatient center of the hospital. I still can build new words, but I can­not sum up my points, such as 7 plus 8 or 37 plus 25. My hus­band has to lend me support in counting. And he mostly wins the game!

Concentration is hard work for me when my hemoglobin level is low. However, I have learned over time to simply accept help when I feel this way.

When I am fatigued, my body seems to be very heavy. It feels as if I am going to get the flu; I feel dizzy and I can hear the blood pumping in my ears.

Since stair climbing and even normal walking are big efforts when I’m fatigued, I try to be as efficient as possible and do several things at once so that I don’t have to go a distance of a couple of meters twice. For example, I have a little basket at the bottom of the stairs in my house in which I collect everything that needs to go upstairs, so that I can carry everything up in one trip.

I frequently need to take a break – or even two – when walking longer distances. For example, the walk from the hospital cafeteria to the transfusion center normally takes about five minutes, but the corridors seem to be much longer than normal when I’m fatigued.

There are wheelchairs in every corner in the hospital, but out of pride I still refuse to use one. I know the time will come when I can’t afford to be proud anymore, but I’m not there yet. For now, I just sit or lie down as much as I can and wait until I have enough stamina to continue. I know that within a few hours I will get my transfusion and will feel much better afterwards.

When my hemoglobin level is low, I sometimes don’t find the right words to express myself. I find it ex­haust­ing to talk. When I realize somebody does not understand what I’m saying, I easily get upset. In fact, I don’t like to talk and give explanations at all in these situations. The sentence my loved ones have to put up with most is: “Please, leave me alone”.

Since I am not communicative at all when I’m fatigued, it is not a good opportunity to visit me at home. I can­not listen to a person for more than a few minutes. Telephone calls are not comfortable anymore. In sum­mary, I try to avoid conversations of all kinds when I’m fatigued.

The lower my hemoglobin level is, the worse I sleep. I lie awake in my bed and wait for dawn to arrive. These sleepless nights are particularly long because I am too tired and exhausted to get up and distract myself. It’s during those sleepless nights that I worry the most about the state of my health and everything else. As co-MDS Beacon columnist Pam Wishart does, I sometimes allow myself the luxury of a sleeping pill to avoid these sleepless nights.

Fatigue has been haunting me not only in situations when my hemoglobin level is low. It has been part of my health for years, and it has been increasing since my MDS diagnosis. I have the impression that my body has been wearing out slowly but steadily while fighting disease progression.

Due to fatigue, I had to retire, quit power walking, and cut back on travelling. I frequently have to tell family and friends that I cannot make it to an appointment if I had one before, or that I cannot stay late at night.

I have difficulties to hurry in any imaginable situation. I need more time for personal care and everyday tasks. When I go out with people, I need to know whether there are benches or other possibilities to sit down near­by, I prefer elevators over stairs, and ….well, I could go on and on, and so could you, I bet.

So what do I do? The answer is simple: I abide by the rules of fatigue. I try to adjust my lifestyle according to the level of fatigue I experience.

If I ignore it, the price I have to pay is high. On various occasions since my MDS diagnosis, I have felt so weak that I could not stand up again after a short break of an exhausting walk or event. Over-exerting is dan­ger­ous for me and it’s useless, because it may take me until the very next morning to recover.

It may also happen that I feel fine and full of energy but, five minutes later, all my energy is gone. Fatigue can seize me at any time and in any situation of the day. I have noticed that the fatigue may disappear when I move for a while, especially in fresh air, but there is no guarantee that this will help.

Being a long-time MDS survivor is of course a good thing. It is the second best thing to a cure. Having the choice between a rapidly progressing illness, and a more chronic and slower course, who would not humbly and thankfully take the latter?

So sometimes I feel ungrateful and a hypocrite because of being lucky in my misfortune. Although I complain of fatigue, there are certainly MDS symptoms that are worse.

I nevertheless feel that many physicians don’t take fatigue seriously enough yet. I therefore recommend that you change your doctor if you ever hear him or her utter the sentence “pull yourself together.”

Fatigue dominates my day and affects my quality of life significantly. A lot of my vigor and drive already have gone forever. However, I still have a tremendous urge for life.

Bergit Kuhle is an MDS patient who was diagnosed with the disease eight years ago. Her column is pub­lished once a month at The MDS Beacon. You can view a list of all her columns here, and a list of all pre­vi­ous Beacon patient columns here.

If you are interested in writing a regular column for The MDS Beacon, please contact the Beacon team at .

Photo of Bergit Kuhle, monthly columnist at The MDS Beacon.
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40 Comments »

  • Jerry said:

    Thank you for your article.

    When reading these I typically focus on quoted blood counts and then reference my own trying to equate how I’m feeling compared to my peers with this disease. My own hemoglobin count is running between 8.5 and 8.9. I am trying very hard to live by the three practical pieces of advice you reference, almost to the point of being compulsive in my daily exercise walks. They DO reward me with a positive mental outlook, albeit a tired one.

    I smile at your stair basket as I find myself pausing and thinking about what I need (whether standing at the head or the foot of the stairs).

    Again, thank you for all your articles.

  • Lynn Hale said:

    Bergit you have just put all my feelings of fatigue into your own words, I feel exactly the same symptoms even as far as the not wanting to talk! Currently my HB is 7.8 having transfusion tomorrow, thank goodness, but physically and mentally I feel like a clock that’s needing to be wound up. Well done on a great article.

  • Diane O'Brien said:

    Thank you so much for telling my story in your words. It is comforting and reassuring to know that we are not alone on this journey.

    Like you, I was always busy and active, fatigue did not belong in my vocabulary!!

    I even started to wonder if I was imagining the fatigue and just becoming anti-social. My HB had dropped to 7.5 and received 3 bags blood transfusion. However, a few days later, fatigue was back with a vengeance. Another blood test was done and it showed platelets and neutrophils had dropped significantly. Am continuing with chemo. & “watch & wait begins” again.

    Thank you again for putting our story of fatigue out there.

  • Bergit Kuhle (author) said:

    Dear Jerry, Lynn and Diane,

    Thank you for supporting my column. While I write this I have my next transfusion appointment scheduled for Monday. Here is another fatigue-related example: When I was still healthy, which seems to be centuries away, my daily routine was e.g. have a long working day, afterwards shop food, then cook a meal and in the evening have another business meeting or go to some social event.

    Today I manage to work a few hours OR shop food OR cook a meal OR go out in the evening. I can only do one activity per day, at the very most I can do two with an appropriate break in between … I know you know what I mean.

    Thank you for giving me the feeling that you understand so very well.

  • Eleanor Balsitis said:

    I know all the drawbacks of fatigue. I was diagnosed with anemia in May of 2000. After 14 years, I ignore all comments from people, and stares, when I use the electric carts at the grocery store. It is really hard trying to explain why the disease saps all my energy. My family has accepted that no amount of exercise is going to make me walk any distance.

    Vidaza didn’t work, and when my transfusions were 2 weeks apart, my spleen was removed. Now my platelets are good and my transfusions are 3 to 4 weeks apart.

    Thank you for addressing this issue.

  • judy said:

    Bergit, thank you so much for your article on fatigue. I have been so bothered lately by my level of fatigue that I was questioning myself with the idea that I may just be lazy. I was going to write about this, but you have already supported my feelings.

    My fatigue is heavy even when my hemoglobin is up as high as 8.6. It was not like that at the beginning of my diagnosis. I was diagnosed in 2011 with 5q deletion, took Revlimid 10mg for 18 months, but it stopped doing it’s job 15 months ago. Since then, I receive 2 units PRBC every three weeks. At first I felt a few days of energy, but the last three months I don’t feel any at all. My doctor said my vital organs are getting what they need even if I don’t feel energized. I have iron overload and it has nested in my liver and caused changes in my heart. I am not a candidate for chelation therapy.

    Your statements regarding communication with others, either by phone or in person, was so on target with me. This fatigue business is a strong reality for those of us with MDS, but is difficult to explain to others since most of us look healthy even tho we don’t feel that way. I too feel like I have the flu most days and have learned how to adapt to my symptoms without giving in to them.

    We may have MDS, but MDS doesn’t have us!!

  • Joyce butler said:

    Thanks for the article! Because it seems like doctors, friends, and family do not realize what the impact of being fatigue is. Everyone gets tired at some point, but it’s just not the same! This article has helped me even to the point of how you think. But I still remain grateful to the Lord because I know there are folks that’s dealing with much worse than I am.

  • Bergit Kuhle said:

    Dear Eleanor,
    I like this sentence best “no amount of excercise is going to make me walk any distance”. Yes, that is it and no healthy person will really understand that, even if he or she accepts.

  • Bergit Kuhle said:

    Hi Judy,

    Thanks for your optimism and spirit of solidarity ! Do you mind telling me why you are not a candidate for iron chelation?

  • Bergit Kuhle said:

    Dear Joyce,

    Seems that fatigue is quite a synonym for MDS, as it is for cancer. Unfortunately.

  • Marilyn Paul said:

    Dear Bergit,

    Thank you so much for sharing. You describe fatigue so well. You also confirmed a few things I have figured out on my own, such as when I move the overwhelming fatigue lifts. I often find mornings really bad. I have only been diagnosed for 4 months and you mention 8 years. That seems like an awfully long time. My doctor is very slow and I have not had any treatments prescribed, so I find the waiting frustrating.

  • Joanne Persch said:

    Loved your article on fatigue. I have been fighting MDS for four years now. I always say my body and my mind don’t work at the same pace. I do try to pace myself; it seems to work in most cases. I also know when my numbers reach 8.4, for me, I request a transfusion. If its gets any lower, it has a effect on my body and mind. I also make it a point to get up everyday (and sometimes it’s not easy), to shower and get dressed. It makes me feel better. Rest when need be and live life as full as I can. Wonderful article.

  • Derek Palmer said:

    Thanks for a wonderful article. It is so good to know that the fatigue is not,as I was concerned, a state of mind.

    I must admit that if my hb was as low as 8 g/dL I would be a wreck, and certainly not fit to make reliable decisions and, importantly, not fit to drive.

  • Bergit Kuhle said:

    Dear Marilyn and Joanne,

    Indeed, mornings can be bad and especially showers can be very exhausting, so that you feel to lie down again after having taken one. I try not to give in. Once I really get going it gets better over the day … mostly. Wish you all the best!

  • Bergit Kuhle said:

    Hi Derek,

    Also for me 8,0 g/dl is the point of no return. It seems that currently the transfusion guidelines will be changed, because some trials found out that transfusion-dependent people have a worse prognosis (what a surprise!). So they want to give patients less transfusions in general, for this purpose a lower transfusion threshold is recommended by ASH: 7,0 g/l. Well, I can hardly move with 7.5. In my opinion, these new recommendations only will lead to less QOL among the patients and not necessarily increase OS. I hope that you get blood, whenever you need it, take care.

  • Judy said:

    Hi Bergit, in answer to your question, Exjade is out of the question for me because I have congestive heart failure (early stage), and my kidneys have problems.

  • Judy said:

    Bergit, I am so appreciative for all the responses to your article. Makes me feel part of an important Whole.

    I too began to feel very bad at 8.3 and under. My hospital is changing it’s treatment policy to the 7s, but my doctor said they will have to go with his orders for his patients because it’s a proven fact that debilitating fatigue doesn’t follow the rules of blood count but by individual needs.

    I seem to be progressing in this fatigue business so much so that I don’t really have an interest in any social activities, nor do I have the stamina (?) to watch much tv or read, which was my favorite pastime. Is this part of MDS? I am on a low dose of antidepressant — I’m not depressed, just uninterested to put any energy into anything. I seem to be content with these limitations, which seems odd to me, because I was always very active, sociable and fun to be with. Now I feel like a dud, but I’m okay with it. Odd??

  • Susan said:

    My MDS involves the white blood cells. Any advice for this??

  • Judy said:

    Susan, please explain.

  • Bergit Kuhle said:

    Hi Judy again,

    Thanks for answering my question. There are two alternative drugs, not as comfortable as Exjade, but nevertheless … did your doctor suggest one of them? Being as uninterested and indifferent as you describe normally is atypical for MDS, but typical for anemia. Possibly your HGB is still too low even after a transfusion? Having a good QOL and still enjoy life should be important for you, you’re deserving it, having a disease like MDS is hard enough.

  • Bergit Kuhle said:

    Hello Susan,

    Wash your hands religiously and stay away from crowds. That’s all I can say. How low are your whites? I have been at 1.7 – 2.0 for two years, previously on around 3.0 for years …

  • Sharon Thompson said:

    Dear Ms. Kuhle,

    Thank you so much for putting into words what I cannot right now. I was diagnosed with MDS 3 months ago. After 3 years of transfusions & IV Infed infusions due to anemia believed to be caused by internal bleeding (despite clean colonoscopies, endoscopies & stool tests), I landed in the ER over a recent weekend & a fresh doctor finally did the bone marrow biopsy so many other doctors had asked if I’d had yet. It was positive for MDS.

    My anemia was first diagnosed when I was admitted to the cardiac ICU in 2012 for CHF with RBC in the 3′s; I had my second thyroid cancer surgery last year, after 20 clean years since my first thyroid cancer, & had high dose radiation/ablation. Since then I’ve had numerous transfusions, & despite this & the Infed my ferritin levels remain in the 15 or lower range, & my other relevant levels also remain low. I started weekly Procrit in March & for 4 weeks, nothing, but weeks 5 & 6 showed slight improvements, then weeks 7 & 8 my Hgb & RBC have “plummeted” & “are in the dust”. My doctor says give it time, but I’ve given 3 years away to this energy vampire, and I could likely be much further along.

    My onc/hemo doctor kept saying I didn’t need the bone marrow biopsy, even tho my endocrin, gastro, GP said I should have had it long ago, but I wanted to have faith in my treatment, but it’s getting harder. The sleepless nights & couch time you describe sound like you have a window on my world, & I spend those hours when I cannot move effectively wondering what I should do about this. Second opinions have been suggested. My doctor says not to give the whole MDS diasnosis “too much thought” but his P.A. is very good & generally orders new tests & treatments, so I usually request appointments with her as opposed to the doctor.

    My apologies for writing a book, but this is the first article on MDS that I have felt held any relevance, & I cannot thank you enough. I plan to print your article & use your words to say what I’ve been unable to express. And I look forward to reviewing the rest of the material on this site, so thanks, and best wishes to you!

    Sharon Thompson
    Sanford, Florida

  • Bergit Kuhle said:

    Dear Sharon,

    Thank you so much for sharing your story and your thoughts, I appreciate that very much. Reading your lines I find that you maybe have not yet met with the right doctor whom you really trust, although second opinions are essential. As far as I understand you possibly suffer from a t-MDS due to former cancer therapies. To go to a MDS Execellence Center would be helpful for you, they will take care of you and maybe can solve some of your problems. I don’t know where you live, but you can easily google the center which is close to you. I hope your thyroid cancer is under control? No wonder you are a fellow sufferer concerning fatigue. My thoughts are with you!

  • Sam Tasker said:

    Berjite, I like your sentence about fatigue haunting you for years even before your hb was low. I have had mds/aplastic anaemia since may 2001 so 13 years. I have had the low hb and related close relationship with my couch. For the last few years thankfully low hb has not been an issue. On the contrary, my hb is often 12 and up. I do have low ferritin but this doesn’t seem to have much effect on hb. Viruses etc drop my counts incl hb but it soon rises. Anyway what I wanted to say was I still suffer with fatigue even with good hb. I know when my wcc is lowering as the fatigue increases. Similarly I know when my platelets are low (not only obvious outward signs)but also as my fatigue increases. My platelets usually run around 8-10 but when they drop below this I feel so low and if my wcc and neuts are also low then I feel so wiped out and dont have any interest in doing anything. I have been to CBT but they focus mainly on thought processes and whilst I understand that how one thinks about and perceives the impact of mds or chronic illness on their life, it is not to be looked at in isolation. I believe (from 13 years experience) that fighting an illness like mds on a daily basis does have an impact on your body. Humans are wonderful adaptors though and I feel that my body has adapted itself somehow to cope with the low counts which is fantastic but the drawback is it uses up lots of energy so even when I have a modest drop in my counts (either wbc, rbc or platelets) I know about it before it is confirmed. Of course, this could have a lot to do with low grade infection, viruses etc which always seem to just be there as the immune system uses its limited resources to continously fight but can,t eliminate the buggers entirely. I have to ask what your thoughts are in regards stem cell transplantation in chronic mds.

  • Sharon Thompson said:

    Dear Ms Kuhle- Thank you very much for your reply. As you suggested, I searched & found an MDS Center of Excellence at Shands Teaching Hospital in Gainesville, Florida, about 2 hours drive from my home; I had my first thyroid cancer surgery there in 1991. As I also have a recent diagnosis of Chron’s, it was suggested I see a specialist at Shand’s, so I will seek a complete evaluation there for all these issues, as they are likely related, but the link just hasn’t been found yet. A fresh set of eyes can never hurt.

    Theoretically, my thyroid cancer is managed, as I’ve had both lobes removed, and had follow up radiation, and see an endocrinologist quarterly, who now reluctantly prescribes Armour Thyroid after I begged to be switched from Synthroid, which doesn’t sgree with me.

    I greatly appreciate the MDS Beacon site & look forward to reading your future contributions! I shared the site with my weekly ‘neighbors’ while getting Infed & Procrit yesterday, all who were excited about having a new resource for MDS information. With a new plan to get some much needed answers, I am already feeling more hopeful, and thats a good start. Best of luck with your ‘condition management’, may we all find comfort soon!
    Sharon Thompson

  • Bergit Kuhle said:

    Hi Sam,
    13 years of MDS are long journey. I have had 8 years on this bumpy road so far and I agree with your point, although we are long term survivors, our body loses a lot of stamina while fighting. Like you I see obstacles coming before they are really there and very often counts and state of feeling do not correspond. Since my diagnosis SCT has been in my mind and an option in my doctors’ therapy strategy. For more information read my column ” watch and wait”…all the best for you, would be nice to read you again sometime.

  • Bergit Kuhle said:

    Dear Mrs Thompson,
    thanks for your informative and kind feedback . Now I feel more at ease, because I realize that you are in good hands in your Center with an interdisciplinary approach for your different morbidities. Being hopeful helps a lot to go through all the challenges. I like to imagine you and your fellow patients sitting or lying together in some kind of infusion room, reading and discussing Beacon articles! Good luck for all of you and best response to Procrit!

  • Sam Tasker said:

    Thanks Berjit. I will read up. Take care x

  • aviv said:

    My dearest fatigued MDS friends.
    Have you tried supplements such as CoQ10, L-carnitine, lipoic acid and also perhaps MSM as supportive treatment?
    I recommend giving it a try (three/four month.
    My personal experience and some other patients is generally positive (not always).

  • Bergit Kuhle (author) said:

    Hi aviv, I have tried CoQ10 and folate for some time: No effect.

  • Kat Stewart said:

    I have had MDS since 2007. The type I have is very rare (11Q with deletion of MLL gene.) All my blood counts are dropping. My Hgb is 8.3.
    In two weeks I go to Stanford for a bone marrow transplant. I was told by my Stanford oncologist that without the transplant I have 1 to 3 years. And the percentage isn’t high that the BMT will work. I am now 61 years old and am expecting my first grandchild in October. I want to live, but with a quality of life. For me, it’s not at all about length of life, but quality of life.

    I live in California and do wish we had euthanasia here. I would love to be in control of my own end. I truly believe we move on to a much better place!

  • Bergit Kuhle said:

    Dear Kat, for the forthcoming transplant-procedure I wish you all the best. Once it is decided most of the patients I have known so far tend to appreciate the chance of a cure,focus on it and also trust in whatever will come….On the other hand I can very well understand the demand of being in control of everything. It is a bumpy road and nothing can alter this.

  • Jeremy Lansman said:

    Hello all. I have been writing a memo that would go toward a doc to be selected. In the piece, I ask about bone marrow transplant (BMT). I just found an interesting piece supporting earlier BMT in older people and want to share it here. Here is a snip from my memo… “From my reading, BMT often results in complete remission, sometimes azanucleosides result in cure. What about considering BMT? One fellow recorded at ASH 2013, sounded much like a hands on cure preacher almost pounded the desk proclaiming BMT should be used far more often. Having offered no evidence, I searched and found only this. What more do you know? [When Azanucleoside Treatment Can Be Curative: Nonintensive Bridging Strategy Before Allografting in Older Patients With Myelodysplastic Syndrome/Acute Myeloid Leukemia, Michael Lübbert,Hartmut Bertz, Michael Josef Müller and Jürgen Finke, http://jco.ascopubs.org/content/31/6/822.full

    I want to know more, if there is more to know.

  • Bergit Kuhle said:

    Thanks again, Jeremy, for sharing parts of your memo and for the link leading to the article where
    lots of German medical knowledge is involved. In Germany transplant decision strictly follows risk stratification. Are you considered to be high risk?

  • Mdk said:

    Beloved mother-in-law was just diagnosed with mds a month ago—thank you for describing all you feel and endure…I keep wondering if we are doing all we can to help Mom…and wondering if she will ever get better, ever be the super enegetic volunteer and gardener she so loved being in her retirement (she is now 83)…she wants her life back…the promise of medication may return some of that back to her (has not started yet)…but for the interim, at least I now understand why she sometimes is not keeping up with our conversations and discussions, why she struggles with her own conversation at times — am so grateful it is the mds and not dementia, or something that may not become better with the transfusions or the promising medication..thank you for giving us hope and understanding—and thanks to all who responded to this article…it will make us wiser in helping her journey with this illness…thank you, thank you.

  • Bergit Kuhle said:

    Dear Mdk,
    very sorry to hear about your beloved mother-in-law and I hope that the promised medication (EPO ???) will help her for a long while bringing back her QOL.

  • Jeremy Lansman said:

    Bergit: TO answer your question – Last visit doc said my bone marrow makes me IPSS-1. (what… not an -R scale!!?? Ha) I think I want to answer you this way…that I have found a lot of stuff that suggests departure from the “standard of care (SOC)” used by many doctors. I think of the SOC being pretty much like an auto mechanics repair procedure. You know? A list, a recipe to get the car working again. Yet every month there are new research papers published which tell us every so more clearly how little we know about the working of our cells.

    I have read about this months popular cancer diagnostic craze, molecular diagnostics. Individualizing treatment, modelling prognosis, treatment using a medication created just for your, and only your wayward cells. I am impressed by it. Why can’t I just jet to 2045 and get Star Trek’s Bones to treat me?

    Me? I am still, as they say, asymptomatic, healthy and feeling ready to rock… well… maybe the occasional infections are a bother.

    I want prognosis at least as good as tomorrows weather forecast. If I KNEW I would progress to leukemia, I would want to rotor rooter my marrow ASAP. While I can still take the body slam that goes with transplant. If I knew my condition would stand still for another 10 years, I could ignore this problem and stay away from doctors. Which is it? What should I do?

    Of all the hours of my study, reading, I believe the IPSS-x model is not good enough model to make me feel comfortable killing my blood making organ in order to replace it, or to rush down to the demethylazation clinic. Not just yet. Yet… and I want to make this clear… some suggest hitting this deadly nail on the head early, before it goes wild. Here I am. Life or death. My life or death. What to do?

    What I do know is that I want a molecular analysis, and a comparison of my stem cells to the master DNA chart which has not yet been written. At least I can connect with some people working on the chart. No? I ain’t goin fer this watch and wait.. not just yet.

    I hope my ranting makes some sense.

    P.S. One day about 4 years ago I was looking at the most recent CBC and wanting to understand it. While doing that, on the TV came a program, “Neutrophils, Defenders from Infection”. That UW class was where my education started, the statement came that my reading was CRITICAL, setting off alarms. Better get on that, I said.

  • Richard Kilgo said:

    Last September my father was diagnosed with MDS. His insurance coverage was through Kaiser P. the doctor at Kaiser told us not to worry, that MDS wasn’t life threatening but also said don,t look it up on the Internet as it would just scare us. When I queried thr doctor her response was “to many questions”. She started my Dad on a daily injection procedure that she assured us was the correct treatment at that stage of the disease. She never told us what that level was. My Father followed her direction while I attempted to get another doctor to review his diagnosis. He turned 80 in mid October. He passed away of Acute Myeloid Leukemia on November 25, 2013. Don,t believe everything the doctors tell you! Don,t hesitate a second if you are diagnosed, I did and it was the worst mistake I ever made. My Dad worked in the Chemical Industry for over 40 years, if you had contact with chemicals go have your blood tested. Maybe you,ll have a better doctor than we had. May God Bless you and your families.

  • Bergit Kuhle said:

    Jeremy, I have to tell you something you already know, you cannot really control this kind of blood cancer! Recognizing this has kept bothering me since I have been diagnosed 8,5 years ago.

  • Bergit Kuhle said:

    Hi Richard, you are right. A second opinion should be a must. Unfortunately it is an open secret that long-term exposure to chemicals can cause MDS and/or leukemia.