So, What's Your Anemia Like?

[Greg H]

Hi y'all!

I'm about to go in for a packed RBC transfusion (after eight weeks this time, instead of the usual six!). That means my hemoglobin is at it's nadir at the moment, in my case, 7.9 two days ago. (That's actually a bit better than it has been prior to previous transfusions; but dropping below 8.0 is where my doc and I have agreed we'll get some RBCs.)

So, for about the last week, I have blood pounding in my ears all night and I wake up feeling like I have a hangover and got punched in the face by somebody in the bar last night while I was setting up for the hangover.

I'm fatigued of course, but that's par for the course with this disease. As I understand it, if you don't have fatigue, they kick you out of the cancer club. :-) Besides, I spent the last four days setting both wooden and metal fence posts, so I ought to be tired.

So, for me, it's blood pounding in the ears, a nasty hangover, and a punch in the face. What's your anemia like?

Greg

[LynnI]

I haven't been anemic for a while now (one crash in my counts last year) and I have been tx independant now for over 2 yrs. However I clearly remember the anemia and the severe fatigue. I had the heart pounding, hard to breath and rushing sound in my ears too, according to my doc's I also came close to a coronary event when I tried to run while competing in dog agility and once while out in the barn with my horses doing chores.

[Dick S]

Ain't it fun!
I too live with the constant fatigue and shortness of breath and can't do much work. I wake up some mornings and feel all tired, rundown and "runover" even after a good night's sleep. Don't ya just just love having this disease?

[riccd2001]

I've been living with similar run-down aspects for about three years now. Not much fun for sure, but every additional day is a blessing and I look forward to the next one. I'm fortunate in having a caring support family to keep me going and remain as happy as can be in dealing with this difficult disease.

[Ryan Jay]

I always get a weird pain in my tongue, as if it's about to split open.

[Greg H]

Originally Posted by Ryan Jay

I always get a weird pain in my tongue, as if it's about to split open.

Howdy Folks!

Thanks for all those reports. Now I know I am normal. Except I do not want this weird tongue splitting open thing that Ryan gets. And I will pass on the coronary events as well.

About ten months before I was diagnosed, I had some major chest pain and arm pain and had my wife drive me (I know, not smart) to the emergency room because I thought I was having a heart attack. I wasn't, of course, but the ER Doc found I had a hemoglobin level of 9.2 and advised I see my family doc promptly.

I promptly got around to that about ten months later, when, after my brother had a heart attack and triple bypass, I thought maybe I ought to schedule a checkup. My Hgb was 6.1; I had my first transfusion that afternoon.

Looking back at some CBCs from a half-dozen years ago, my Hgb was around 13 -- I think I have probably had relatively low HgB my whole life and had long slow slide into the single digits. As a result, I'm a little more tolerant of low levels, for which I am grateful. But I think it's pretty well documented that there's a kind of fatigue that comes with MDS that's unrelated to Hgb levels (cytokines or the like mucking up the works). And that's what makes me feel like I've been run over by a truck some times.

Y'all hang in there!

Greg

[mausmish]

My counts are good now but I still get leg pains, and my heart pounds in my ears when I go to bed at night. Before, i mainly noticed the extreme shortness of breath and fatigue. I even went to a pulmonary specialist who told me my only problem is that I'm overweight and out of shape. He didn't bother doing any bloodwork. Two months later, i was diagnosed with AML/MDS.

[Susan L]

Boy can we all relate to all of these comments!! No energy, pounding in the ears, fatigued doing nothing much - short of breath - pain in the legs - and Karen - bless you - the "just being out of shape - need to do more and it'll be easier" comment. Boy that was nice to hear when your really sick. It is nice to have a place where everyone is in the same boat. Hang in there - we'll beat this!!

[Greg H]

Karen,

"Overweight and out of shape" -- and, with some serious MDS by the way!

Reminds me of the old one about "Just because I'm paranoid -- that doesn't mean someone's not following me."

Cheers!

Greg

[lotusbud]

This is an old thread, but oh well.
My hemoglobin is fine, for most part, the rest just is not exactly. However, I have sometimes serious breathing difficulties, also went to pulmonologist. Sometimes my legs seem to explode.... and it is time to rest a bit. Chest pain is new (also visited cardiologist). But simple fatigue, dizziness, and the roller machine they use to flatten asphalt - that seems to be the friend mostly visits me... or made a too close render vouz with a truck...

[dsandrock91]

I have been told i have anemia since 2009, was just diagnosed with Aplastic anemia last year in September. My current numbers are WBC 4.1, RBC 2.54, HGB 9.0, Platelets 27. The other numbers from the CBC I don't know what they are or what they mean. When ever I went to the doctor they would tell me my iron is low but wouldn't offer any treatment or made it out for me to believe it was nothing to worry about. When I was diagnosed my platelets were at 14 I think and now they are at 27. Was told that my numbers have been dropping since 2009, but just found out about it because the doctors never told me my levels or that I should be concerned about it. Even though I'm diagnosed my current Dr had hard time coming to a conclusion about what my issues were. She told me that I meet most of the criteria for aplastic anemia but not all, and currently not doing any treatments except monthly CBC. Every time I go to get a new CBC and the numbers seem even lower to me the doctor and nurses don't seem as worried as I am. I feel like I'm the only one concerned and worried; and its extreamly frustrating.

[Sally D]

Originally Posted by dsandrock91

I have been told i have anemia since 2009, was just diagnosed with Aplastic anemia last year in September. My current numbers are WBC 4.1, RBC 2.54, HGB 9.0, Platelets 27. The other numbers from the CBC I don't know what they are or what they mean. When ever I went to the doctor they would tell me my iron is low but wouldn't offer any treatment or made it out for me to believe it was nothing to worry about. When I was diagnosed my platelets were at 14 I think and now they are at 27. Was told that my numbers have been dropping since 2009, but just found out about it because the doctors never told me my levels or that I should be concerned about it. Even though I'm diagnosed my current Dr had hard time coming to a conclusion about what my issues were. She told me that I meet most of the criteria for aplastic anemia but not all, and currently not doing any treatments except monthly CBC. Every time I go to get a new CBC and the numbers seem even lower to me the doctor and nurses don't seem as worried as I am. I feel like I'm the only one concerned and worried; and its extreamly frustrating.

Delesa,

Have you had a bone marrow biopsy? Do you have doctors who are very familiar with possible AA treatments? We all have individual blood count numbers but yours remind me of mine before I had my first treatment at Stanford in 2008. I live in a rural area and my doctor here wanted me to go to a hospital that had lots of experience with AA. I responded well to an ATG with Cyclosporin treatment, and was able to be transfusion free in about three months with blood counts rising again to a decent level. I feel very fortunate to have a caring team of doctors and to have treatment options available that allow me to go on. At your age I would think you might be a good candidate for a bone marrow transplant?

Good luck to you and tell your doctors you would like to hear about treatment options. It's not easy, but it is worth the fight!

Sally D

[dsandrock91]

Sallly: yes I have had two bone marrow biopsies and all the labs and tests the Dr can think of. What was/is the hard part in my diagnosis is that my red and white cells are not drastically low like you would expect in a typical aa diagnosis. Just my platelets are extremely low. Seen my doctor today and as of right now we are not doing any treatments because according to her my numbers have some what stabalized but to me they seem really low and worrysome. I don't know if you are familiar with the Ohio State University medical centers or not but my Doctor is supposedly one of the top Hemotoligist in the state and works for the James Cancer institute through OSU. She has gone over the immune serpressiant treatment and the different medications but as of right now we are going to see if my number are going to drop or stay about the same. Since getting diagnosed my highest platelet count was 39 and as of today I am at 26 so they are dropping and she sees that. I do trust her she just doesnt seem concerned about how I feel and at times talks to me like I understand and know all the terms and I don't.

[Hopeful]

Hi dsandrock91,

I would strongly encourage you to find a way to the Cleveland conference somehow. The conferences are invaluable for talking to experts and meeting many people like yourself who are faced with the same disease.

Also, you should check out the aplastic anemia videos at:
https://www.pathlms.com/aamdsif/categories/363/courses

They are excellent and some start out pretty basic in describing the disease and treatment options. You will be learning the lingo in no time If you find a good one that is easy to understand, share the link with your family so that they can understand what is going on with you. It helps to have the support of family and friends but often times they don't understand the seriousness of the disease because "you look fine".

If your ALC and ARC are good (from your CBC), that is a very positive sign that you will likely respond to ATG/Cyclosporine treatment. Being young is also a very positive thing. If you are transfusion dependent, you don't want to delay treatment even if you don't fit the exact definition for SAA, in my opinion. If you are not transfusion dependent and not SAA, then watching and waiting is a reasonable approach. Sometimes aplastic anemia is triggered by a virus or chemical and the body is able to fight it off eventually. Although watching and waiting is stressful, if your body can fight back on its own, that is really the best case scenario. It will take time though...

You mentioned that you were anemic in another post. If your BMB shows absent iron stores and you are not getting RBC transfusions, then you need to talk to your doctor about supplementing with iron. This is especially true if you are a young female with low platelets! Ask them to write you a prescription if you don't know how much to take, and be sure that they monitor the iron levels in your body. This will help your energy level tremendously and may bring your HGB up to normal levels.

Also, I think you mentioned that you have health insurance issues. if you are under 26, you should look at getting on your parents' health insurance coverage.

Be strong

[dsandrock91]

Thankyou for the link for the videos. I don't think I am transfussion dependent I have only had two and that was when I was first diagnosed or realized I was sick back in September or October. Haven't had any since. My levels have some what leveled out since then in the high twenties and thirtys but now they seem to be slowly dropping again so the doctor is going to monitor me for a month or so and see if they are dropping and if they are then we will proceed with the immune surpresive therapy. I think that is what she called it, still not used to the lingo, lol.
My parents have medicaid in a different county in ohio than where I live so I can't get on to there case. I have gotten in touch with a case worker from the hospital that is helping me to get my insurance back.