Fatigue and Shortness of Breath

[Data]

I realize using the terms typical and MDS in the same sentence doesn’t make sense but what I am curious about is my degree of fatigue and shortness of breath (SOB). I was diagnosed with MDS-RCMD almost a year ago and the only quality of life (QOL) issue I have is my fatigue and SOB. But that has been a huge impact on my QOL. To give you an idea of the extent of it if I carry the garbage can (empty) from the street to the back yard I am tired and need to sit down and rest. I am also out of breath. This is only a distance of maybe 500 feet. I have discussed it with my hematologist / oncologist and her comment was that my fatigue doesn’t seem proportional to my blood counts. That may be but I don’t know what is causing my symptoms. Does anyone else have any experience with fatigue or shortness of breath comparable to mine?

I have been tested for a lot of things – some of which are listed below.

Lactate Dehydrogenase (LDH) 224 (60-200)
Erythropoietin 678.4 (2.6-18.5)
Vitamin B12 688 (240-900)
Iron 111 (45-170)
Iron Binding Capacity 320 (235-430)
Iron Saturation 35 (20-55)
Transferrin 252 (175-340)
Ferritin 120 (30-285)
Calcitriol 82 (18-72)
Cholecalciferol 82
Calcidiol 31.55 (30.0-100.0)
Copper 85 (70-175)
Hematocrit 28.2 (41-52)
Hemoglobin 9.7 (13.9-18)
Basophils 0.02 (0.0-0.2)
Eosinophils 0.13 (0.0-0.3)
Erythrocyte Distribution Width 13.9 (11.5-14.5)
Erythrocyte Mean Corpuscular Hemoglobin 36.6 (27-33.3)
Erythrocyte Mean Corpuscular Hemoglobin Concentration 34.0 (31.8-37.1)
Erythrocytes 2.27 (4.44-6.1)
Leukocytes 2.34 (4.6-10.8)
Lymphocytes 1.28 (1.2-3.6)
Mean Corpuscular Volume 107.5 (80-98)
Monocytes 0.21 (0.14-0.76)
Neutrophils 0.70 (1.8-7.8)
Platelet Mean Volume 12.4 (7.4-10.5)
Platelets 30 (130-440)

Thanks for any ideas!!

Data

[vickij]

I was always tired & short of breath when my hemoglobin would drop below 9, if I walked up the steps my heart would pound & I would have to rest. I would have a transfusion when it got to 7.

[maggiemag]

Data, I'm an RN, and one with several other medical issues besides MDS, so maybe I can help a little. The most common reason for shortness of breath in an MDS patient would be heart failure due to severe anemia, as that makes the heart work a lot harder. But your anemia isn't severe; I'm talking like 5 or 6 HB. There are many other causes of shortness of breath that are unrelated to MDS. Among them would be heart failure due to a valve problem or a heart muscle problem (like me), emphysema or other chronic lung disease. Fatigue may be secondary to shortness of breath. Are you deconditioned? My pulmo told me that one of the most common reasons for shortness of breath is deconditioning; developing a fitness program can really help some people. Have you checked in with your PCP lately? You may well have something else going on that be may successfully treated. Hypothyroidism can cause severe fatigue, for instance. I wouldn't ignore your symptoms; your quality of life is affected. Some simple blood work or some pulmonary function testing could reveal more info. You owe it to yourself to get checked out; could be something minor!

Hope this helps some, Data, and good luck in your journey.
Mags

[DanL]

Data,

When I was diagnosed 5 years ago, my HGB was hanging out at around 12.5 to 13.5, WBC was completely normal, and platelets were really low at 20k to 30k and stayed there for about 4 years. Even though my HGB levels dropped from 13.5 on the high end to about 9.5 or 10, my energy levels didn't drop as much as I expected. I would frequently have bouts where I felt like getting back from emptying the trash was more like a jog than a few steps, and other times where I felt perfectly normal. Taking out the trash literally could be a heart-pounding event.

Although it is only an observation, when I went through transplant, it seemed that white blood counts had a lot to do with energy levels as well. One measure of recovery during transplant is marked by WBC engraftment and the changes i experienced as WBC counts recovered was remarkable.

Not sure if everybody else has experienced it, but it is a working theory that I have and am still watching 1 1/2 years after my transplant. I am thinking that the low energy swings could reflect low level infection that isn't necessarily showing up easily and is depressing your immune system, causing a drag on everything else.

Long post for a simple thought, but I think that you are pretty analyticial and might see a correlation for your situation.

[mitch]

I correlate my fatigue and SOB directly to my hgb levels. And I measure myself pretty much the same as you - taking the garbage cans out to the street. Although my driveway is only about 100 feet long it is on an incline. When the Vidaza was working and my hgb level was running in the 13 - 15 range, I had good energy and no SOB and could take the garbage out without a thought. But now that the Vidaza has quit and my hgb has fallen down to the low 8's (8.1 -8.4) I get very winded going up and down my driveway, whether bringing in the garbage cans or just getting the mail from the mailbox. I would think that your hgb being at 9.7 may be a contributing factor to your fatigue, but I am in no way a doctor, just another patient.

Mitch

[bailie]

I seem to correlate a weakness/shortage of breath with my hgb levels. Not sure how valid is my observation.

Mitch, are you still discussing transplant? What regimen are you on now that the Vidaza stopped working?

[Data]

Hello,
Thanks for all the feedback. I don’t feel like the lone ranger anymore.

Vicki, Thanks. The heart pounding is something I have experienced but forgot to mention. Appreciate you input. Good luck with the BMT.

Mags, Really appreciate you expert (RN) opinion. I understand what you are saying and have read the same thing in other articles. I do see my PCP every 6 months’ and he has looked into the fatigue but says it is a results of the MDS. He has ran numerous tests and all of them have come back normal except the ones that point to MDS. As far as conditioning goes I really can’t see myself exercising. I am not being sarcastic but it seems like trying get in shape is like trying to save for your kid’s college when you are on minimum wage. Maybe it is just a vicious circle. I do appreciate your thoughts!!

Dan, What you said was interesting. I was in the hospital for 11 days recently for an infection. Normally one would expect your WBCs to go up during an infection but mine were low. In fact the first 4 days I was in the hospital my WBC counts were 1.6, 1.2, 1.5, and 1.6. On the last day they were 2.3. During my hospital stay and since is when this fatigue really got bad. I am supposed to have my labs done on Thursday and am anxious to see how they are. Thanks for the input.

Mitch, Your levels seem to be close to mine. My latest hemoglobin 9.7 and that was after 20,000 IU of Procrit. If it goes above 9, they won’t let me use the Procrit (I have it at home but they tell me not to use it). When I was released from the hospital recently it was 8.3. It has come up a little but I don’t see much change in my fatigue. I would love to have a Hb in the 13 – 14 range!! Maybe they will try Vidaza on me. Thanks for taking the time to share your experience!!

Bailie, I agree that weakness and shortness of breath correlate with Hb. I just wish I could get mine back up to 13 or more but they hold the Procrit when it gets above 10. Your counts look good now. Good luck and thanks.


Thanks again to everyone for commenting and good luck in your respective journeys.
Data

[mitch]

Bailie, to answer your questions, I am waiting for the transplant team to contact me for their initial interview to see if I'm a candidate for a BMT. Also, in the meantime I'm supposed to start Revlimid but have not heard back from them either, to see if I can get financial assistance for the drug. (My insurance only pays $2500 per year towards prescription meds, and the Revlimid is $16,000 per month - which would be all out of my pocket.) Just in wait mode right now.....

And good luck to you too, Data, along with everyone struggling with this disease...

Mitch

[Data]

I just got some of my CBC results from my lab work I had done yesterday. They are:
Hb = 8.6
WBC = 1.68
RBC = 2.24
Platelets = 21
Neutrophils = .44

These are all down from the last CBC I had.

It was the EPO clinic that called and she said I should take an injection today and definitely talk to my hema/oncol on Tuesday.

Thanks again for all the comments!!

Data