MDS Patient - How Long Can I take Care of My Home, Yard, etc.

[Catherine63]

I would like to know how every day life will be in the future. I will probably start procrit in the near future. I know this disease affects everyone differently but is there any literature that can tell you at what point you can expect certain things to happen? I live alone and would like an idea of how long I can expect to be able to take care of my yard and home, etc.

[Neil Cuadra]

Hi Catherine, and welcome.

Your doctor is the best source of medical information, especially information that applies to you personally, but as patients and caregivers we can share our experiences with each other.

How you feel, what you can do, and how that changes over time depend on the state of your MDS (how serious and how it progresses) and on how successful your treatments are.

The common symptoms of MDS are due to low blood counts. Patients may have low red cell counts, low white cell counts, low platelet counts, or a combination of 2 or 3 of these. Low counts can range from slightly below normal to dangerously low, and some patients feel the effects of low counts more than others, so every patient is different. Have you kept track of your blood counts from the "CBC" (complete blood count) tests they give you?

If your red cell count is low (you are "anemic") then you may experience fatigue and a generally low energy level. If it's minor, not severe, that wouldn't stop you from cleaning the house or gardening, but with less stamina you wouldn't get as much done as quickly. (If you are getting transfusions, you may feel more energized after you receive blood.) The lower the red cell count, the more likely severe symptoms become.

If your white cell count is low, you have less protection against infections. You may not feel a low white count, unless you get an infection, but it may make it advisable to take more-than-average precautions to keep yourself safe, by paying additional attention to sanitation and by avoiding possible sources of infection.

If your platelet count is low, you are more likely to bruise and bleed, because your blood won't clot as well. You won't feel this, but you might get nosebleeds or large bruises from small bumps. That makes it sensible to avoid activities that involve excessive bumping or a risk of injury or bleeding. For example, patients with low platelets should consult their hematologist before going to the dentist.

Therefore, a low red count is most likely to affect how you feel, causing you to have to pace yourself, while a low white count or a low platelet count won't necessarily stop you from doing anything, but they make it smart to limit your risks. Once you understand what your blood counts mean for you, common sense is often the key, as is asking your doctor whether to limit certain activities based on your current condition.

I haven't mentioned side effects of treatments, since they are all over the map. Every medicine has a long list of possible side effects, but you don't know which of them, if any, will actually affect you. What you can do from day to day certainly depends on whether your treatment and any side effects interfere.

I hope that gives you some idea of what it's like to live with the low counts from MDS. Please continue to ask questions. I'm sure that's good for you!

[Catherine63]

Thank you Neil for your reply. My doctors have pretty much told me the same thing. I haven't posted a "My Story" account because my doctors caught this so soon I have not had any severe problems from it yet. I am sub-type RA and have been since I was diagnosed. Only the red blood cells are involved at this point. After reading so many stories, including yours, I feel pretty good about where I am at this point. Thanks again.