Have any of you patients been able to work full-time or return to work.

[lindajo]

I am a 44 year old single female with RCMD and an IPSS score of 2 or intermediate. Initially my diagnosis was erythremic myelosis. Diagnosed in 1991 I had multiple transfusions the first year and a half and then I improved to the point where my last one was July 1999.

I have only recieved supportive care. Transfusions and antibiotics as needed. In 1999 I went on numerous vitamin supplements and my bone marrow improved.

This year for the first time I have iron overload, possibly due to the Vitamins supplements. No chelation therapy as yet. I discontinued vitamins.

I still have unpredictible fevers and fatigue. My goal is to return to a more normal life and eventually work full-time. Has anyone else achieved this?

How do I get there? lindajo.

[Suzanne]

At this point I have a very normal life and feel that I could work full time physically without a problem. I have chosen to work part time just so I have free time to do things I want to do just in case the time I have of being “well” is limited. But I am a lot older then you are & close to retirement age anyway. If I was your age I would be working full time.

[gemloyear]

Hi Linda, My husband has RCMD also and has worked full time up until 3mo. ago,when he developed blood clots in his legs,and then cellulitis. The only time he has taken off is when he has been hospitalized,once for a splenectomy and once when he had pneumonia. He still works occasionally to repair equipment for his sons business. He is now 75 and is on s.s & a pension, but he likes to keep a hand in the business, and to feel needed. I think he should quit and just visit once in awhile. I think you should try to find part time work in your field first to see how much you can tolerate without becoming too fatigued. It’s good to be able to work enough hours to receive benefits and possibly a pension. I’ve gotten a lot of satisfaction out of working during my lifetime and wish I could still do it. I think that vitamins help a lot to over come fatigue, just don’t over do it.Good luck with your endeavors You can do it!! P.S. I worked full time
until age 71 and part time until 75 !
Ellie .

[Suzanne]

what is RCMD. Is it in the MDS family of diseases?

[Neil]

RCMD is Refractory Cytopenia with Multilineage Dysplasia. It is one of the classifications created by the WHO. Not in the FAB system.
It is something of a “catchall”. It puts many of those who were unclassified under the FAB system into a classification. It seems to need the IPSS scoring also since a patient with RCMD can be a low risk or high risk patient.
I am one of those that was unclassified under FAB and am now RCMD under WHO. The issue yet to be decided is my risk level. Platelets of 10,000 would probably indicate a intermediate to high risk. But with no symptoms of low platelets, I feel my risk level is low—-as long as I am not involved in an auto accident.
HGB runs around 10.5, WBC 1.5 and RBC about 3.5
on those days I have a CBC before a procrit shot. At the mid point between shots HGB has gone to 12.0, WBC to 2.0 RBC to 4.5 and platelets have gone to 18,000. Seem to have some carryover effect from procrit on my WBC and platelets. The EPO apparently has an effect on those lines also. A rare, but temporary event according to my doc.
HBG/RBC has been slipping over the last few months. They kicked up my dosage last week. Am curious to see the effect next week.
Still feel good,but want to respond to the decline before I feel rotten.
Neil

[sgoodman]

I am a 41 year old woman with MDS/myelofibrosis and I have worked full-time since my diagnosis in 2001. I have ongoing fatigue but have had no transfusions. If your work place is flexible,you can do it if you choose. At some point, I may make the choice to go part time, given the likelihood of a transplant, but have not yet.

Good luck.

[frank]

i worked as full time, but have to get transfusion frequently…
Frank

[lindajo]

Thanks for all of the responses. I had no choice but to go on disability initially becasue an infection caused brain swelling and it took several years to recover from that.

After being off work for 14 1/2 years going back seems like a monumental task. I have tried several times through trial work periods but with a white cell count of 2.0 I always ended up picking up infections that would put me back where I started.

I have been very stable the last two years and almost feel an obligation to try again. My doctor thinks that is nuts.
My main problem with even part-time work is that when the fatigue hits, it completely incapaticates me. I feel like no one should count on me, during that time.

I have never found anything that works to head off the fatigue or brain fog that hits at least every other day. If I could minimize those episodes I might be successful at least part-time work. Any suggestions?

Right now I limit myself to volunteer activites just to have the positive experience of being useful to someone.

Neil thanks for explaining the WHO vs. FAB classification difference for me, you did it so well. I was unclassified for a long time also.

I am just learning to use this site so bear with me. Thanks everyone for your patience.

[JulieMarie]

Lindajo,

My mother worked as an RN all of her life. She’s been off work since May 25th, but due to reuturn to work only 4hours / day / 2 shifts per week starting on July 26th until we go back to the doctor again on August 3rd.

If you can live without the extra pay check, I would just do the volunteer things. We always need Voluniteers for this or that and if you’re willing that’s great!! How ever, if you’d like the extra income try work only a few hours a day ever other day so you still have plenty of time to rest.

Hope that helps! Keep up the positive attitude and you’ll do just fine!

[Suzanne]

You can do some part time work and still collect disability . I did that when I was at risk with low white counts and with the brain fog from chemo.Just answered phones in an office where I knew people, 6 or 8 hours a week-2 days 3 hours each- in the evenings when there were not a lot of people with germs around. I felt better for getting out and doing something. And the little bit of extra money helped. I tried one trial Work period with increased hours when I was still on the Zarnestra but the chemical fog and stress were too much so I went back to the part time until I had been off drugs for long enough for the fog to clear.

[Neil]

Would really think about returning to work. If fatigue sets in is it worth it? If your WBC is low and you get frequent infections, the exposure to other people is a risk you really don’t need.
Is it possible to work out of your home. There are a number of opportunities to work from home on a computer. Just a matter of making the right connection with a legitimate employer.
Seems a bit unusual for your iron to be going up without transfusions. What is your feritin level?
Remember it takes about 14 years of iron overload to effect organs. That would put you at about 58. You should be considering chelation earlier rather than later. It can take a bit of time to get it back down if feritin levels get a foothold. Would discuss with your doc.
Neil

[lindajo]

Thanks for the ideas. I have looked into training to do computer billing and dictation for medical offices this fall. I have a neighbor that does that from home.

I think I’ll see how I do in class before I look into the formality of filing for job retraining and trial work period.

Neil, I have never heard that iron overload takes 14 years to effect the organs. Where did you get that information? My doctor doesn’t want to do chelation until I hit 1000. Last year was the first time we measured the ferritin level since 1999. It started out around 450 went up to 562 and is now down to 362. The only thing I changed was dropping birth control pills and all of my nutrition.

NO one has any idea why my iron level went up without transfusions. It has confused several hematologist, nutrionist and chiropractors. I didn’t have iron in any of my supplements. They think maybe too much Vitamin C.l

[Neil]

The 14 year time frame has been mentioned frequently on this and other sites. The last “official” comment came from Dr Eric Nesbit-Brown of Dana Farber Cancer Institute. He was giving a presentation on Iron Overload Management at an MDS conference I attended.
A Ferritin level of 1000 seems to be the common point to start taking Desferal. Have a friend who has been cheleating for a number of years. He didn’t start till he was at about 2000. His hemo now recommends beginning at 700. Can be tough to get it down once it gets a foothold.
Saw some comment that the cause could be genetic.
Found it in an article on Hemochromatosis on the net.
Neil

[Suzanne]

when mine was measured after I went into remission at my request it was about 2000. My doctors said they would not recommend doing anything for a least a year because I am no longer getting tx’s and my body might take care of it on it’s own. It was measured again-can’t remember how myuch later- to look at the trend and it is slowly going down on its own. I am not particlarly careful about what I eat but stay away from anything that is iron fortified.

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