I'm sure you all know that Cat Johnson passed away last week. She did have a BMT but never really recovered from that. Cat is the gal who suggested I take Joe to a specialist. So sad!

Sorry Guys, I've been away so long, it really is a long story. My computer crashed and to be truthful I forgot the name "Daily Strength". It was when I received notice about Cat's death that I read some of the back messages, one written by Millie mentioned "Daily Strength" and so here I am.

I haven't read back messages to catch up on everyone so not sure if you know Sandra Grosbeck died as well. She and Cat went through the transplants about the same time. She died July 15, 2013 at 69 yrs. Following is the last message to Cat from Sandra:
Mar 24, 2013 11:06pm

Cat, Why can't we be Robin Roberts....oh well, I am glad that she is doing well and back to work.

1/23/13 my husband and I went to U of M for my annual check up. I have been having severe back pain and had taken a couple of falls. I was using a walker. Well, I fell backwards going into the elevator at U of M...what attention did I get. No, camera men tho. Hit my head so they ran all kind of tests. When they told my husband and I that I had a tumor the size of a grapefruit and leukemia in the right hip and there was no cure for me. My husband and I just looked at each other with our mouth open. I spent a few weeks at a w/c. Here we went to Ann Arbor thinking we were staying overnite and was there over a month. I had radiation, chemo then sent home.My blood work is improving slowly,plattes 83.

I guess they will do a petscan and BMB, keep me in remission. I tell every one that I gave up cancer for lent and I am living. It is so great to be home, near my church family and frients. Sorry to have to give you this news. But, it is what it is. God is good and I am ready anytime to go to the home of glory. My daughter lives nearby and has been a great help.

Cat. You hang in there and don't give up, I am not...I believe in miracles. Peace of Christ be with you. Sandra
Sandra Groesbeck

I'll bring you up to date next time. Tecia & Millie, Thanks for thinking of me. Hugs!

Oh Becky Jean I was so very happy to see your smiling face back here. When someone is missing, I tend to think the worst. Please keep posting so we know you are doing OK.

I have received so many messages from Joe, gone over a year. Unbelievable! Mostly when I am the saddest or angriest, Joe comes through load and clear.

Thanks Millie, I just didn't remember "Daily Strength". It wasn't that I didn't think of you guys all the time. I'll post over on the "New Member" that seems to be what everyone follows. Hugs!

I am alone. My husband has MDS, all relatives are in Michigan and we are in Florida. He is 81 and I am 68. He also had a stoke in Oct 2013 and it has changed him. My tears are just below the surface for me. I suck it up every time we go anywhere. He does understand what he has, and I feel selfish in being so emotional. I wish he was the same partner I have had before. He has had quadruple by pass, two colon cancer surgeries, a colon blockage surgery and 5 back surgeries. He was always him! We could get thru it together. Now he is no longer that man, and I am truly alone and feeling sad, selfish and like the whole world is on me. I just need someplace to vent.

Hello Epeer,

I am also in Florida, SW. If there's anything I can do for you, just ask. I experienced the same things you are going through. Frustration, anger sadness. I ran the whole gamut. My husband passed away in September 2012 and so I am going it alone. It is sad what I have to say, it is almost a relief. It was awful.
Millie

Hoping for some ideas on how to support my husband. He is recently diagnosed with low level MDS but it is still a big change in his life. He is getting Procrit shots weekly and has had several transfusions. Last week he got four units of packed red cells instead of his usual two. Hemoglobin was up to 10.4 on Monday. Glad for the improvement but it took almost 2 liters of fluid to get there. Today he told me that his feet and ankles are swelling. Is this normal? I can tell he has balance issues and his thought processes are not sharp. I also notice that he gets very out of breath with very little exertion. We are in this together. I want to know how to support him without "mothering" him too much. We have not been told anything really about what to expect. Do we just keep getting Procrit shots and transfusions indefinitely? Is there something else available? I feel so badly for him. He has never been sick or in the hospital so this has hit him pretty hard. He really resists going for the transfusions and I worry that if he waits too long between them that he is doing damage to his organs that can't be reversed. This may be a totally unfounded worry, I don't know. If you have a similar story or can share any information, I would greatly appreciate hearing from you.

Don't know if this group is still active, since the last post was quite a while ago. I am in need of someone to talk to, someone who understands this illness. My husband was hospitalized right before Thanksgiving for a severe pneumonia, he spent several days in the ICU on a breathing machine. Then the dr said that his heart was weak and there is some kind of heart condition, but they couldn't do the heart catheter because his blood count was low. After several tests they decided to to a bone marrow test. Then we were told that he had MDS.
First we had no idea what it was, the dr didn't even explain anything to us, we were just told that he needed chemo.
He was released home, but after a few days he got so weak again with breathing problems that I took him to the hospital again, this time another one. He received already several blood transfusions. The oncologist explained to me that my husband has therapy related MDS (he had chemotherapy 24 yrs ago for testicle cancer), and that in his current condition they could not do any chemo therapy. Even with chemo they give him only 8 month.
I feel completely overwhelmed and devastated. His last physical was 2 yrs ago, everything was fine. He started getting short of breath and fatigued earlier this year, but didn't go to see the doctor.
It is ironic that something that saved his life 24 yrs ago is now bringing him down.
I am also struggling to find help to take care of him at home. I have to work, it's the only income that we have left now and it's where our health insurance is coming from. Just have to continue to have faith and to fight.

I am brand new to this group. I am the caregiver for my husband, while keeping a full time job that requires leadership and responsibility for a lot of other people.
We are only 4.5 months post transplant, and while the blood tests show things are working well, he doesn't really feel well. Staying positive is hard when I always feel so tired. Is this normal?

I was searching for a support group for MDS and found this one. I was wondering if this is still an active group. I hope so because it seems like it would be helpful for those that are caregivers.

Please let me know. Thank you W

I also just found this group. My mom was diagnosed with MDS probably close to 5 years ago. She has taken blood transfusions regularly and has used several different types of chemo. Her condition is getting much worse, which is really scary. At the beginning of April her platelet count had fallen to 0 and she was hospitalized for almost a week. After coming home she started getting much stronger and then all of a sudden we are back in the hospital fighting pneumonia. We ask ourselves all of the time if we are being selfish by continuing these treatment path. The alternative is something none of us are ready to face. It is so frustrating at times. I hope that there are still some active people in this group. It is nice to share with someone who truly understands what you are facing.

I am new to the group, but it looks like it has gone kind of dormant? ssomers0313, I'm not sure that by posting this it will notify you or not, but I would love to connect with someone like yourself, as we are the same age and both dealing with our mom. My dad and I are dealing with this by ourselves and feel like the blind leading the blind.