[lindajo]

Sorry, I am new to the website and didn’t realize that doctors were already recommending BMT. I just think that it should be a last resort after two or three opinions.

MD Anderson is an excellent center but research is movng so fast that you might want to consult with another center of excellence team before going for the transplant.

A second opinion is always a good idea. I will pray that she goes back into remission as soon as possible.

[lindajo]

I was 29 when I was diagnosed in 1991. To date I have only had transfusions and antibiotics as needed. My sister is a perfect bone marrow match.

Initially doctors thought I would need a BMT but after 14 plus years they no longer think so. I have been up and down so many times that I recommend you learn to expect that and not freak out at every blood count.

Is it possible that she is just sick and MDS is not the issue? Did they do a bone marrow tap?

Her working in a hospital is not going to help her stay healthy. That is where all the bad germs are. At least she is constantly reminded there of proper hygiene.

Can she quailfy for disability or retrain for a less stressful job, less risky position? She has time on her side. She doesn’t need to go for the BMT immediately. A lot of promising research may make BMT unneccessary. Good Luck we will pray for you and your family.

[lindajo]

Each hospital has a department of social services that is trained to help patients with all of the insurance rules for that state. Their billing department can also be very useful. They are your best resource.

If you look in the yellow pages your state insurance department probably has a toll-free number and a website that would provide free information for you. Most departments also have free booklets that answer the most frequently asked questions. Use them to explain anything you don’t understand from the hospital. Good Luck

[lindajo]

Patti, Don’t get so hung up on the heart rate. Your MIL might be telling the truth, that she does feel fine. Sometimes I feel my worst when my counts are closest to normal. My heart always slows down when my hmg drops but it isn’t a warning sign, I feel like my body is just going into a conserving mode. Kind of like a computer that powers down or when a person is drowning their body powers down to maintain essential functions.

She probably tanked this week because her hmg is so low. If she isn’t doing a lot her heart rate will be lower than if she is active. Her heart rate might go back up as soon as she is transfused.

She how she feels after the transfusion. I know that sometimes I don’t know how bad I feel, until I feel better.

This is hardest on you. You want to help and feel powerless. She has you and room service from the nurses. Just having you there to keep her company is so valuable.
Hope this helps. Linda

[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

[lindajo]

You might also want to get an information packet from the aa-mds foundation.Their website is http://www.aplastic.org They are a separate group and primarily provide patient education.

A center of excellance is the best idea. Second or third opinions are sometimes needed.

Make sure that she doesn’t have another health issue that can be causing her symptoms. A good internist or general practionier needs to be on your team.

I recieve a lot of pain relief from chiropractic treatments and therapeutic massage. Consulting a nutritionist is also recommended by most doctors at the centers of excellence. Nutrition is not their area of expertise so they don’t make recommendations as to diet and supplements.

I will keep you all in my prayers.

[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.

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