Don't feel alone and don't sit and cry, because there are lots of us who UNDERSTAND!
I pray daily for strength and courage on this new journey. It's something none of us would have chosen for our loved ones or ourselves.
Im thankful for all the new treatments that are out there and the clinical trials that are being conducted. Hopefuly soon a cure will be found.
Linda

I am the caregiver....my husband has MDS and I'm really trying to understand what I can do, I have done a lot of research, but it only makes me more afraid of what the future holds. Right now he is holding his own, has his blood checked every two weeks, it goes up and down, about the time they start talking chemo, it goes up and they wait, until the next time. He is 75 and has had this for 3 years. I will be glad to hear from others......Janet

Very comforting for some reason to know that others are experiencing similar misery. As my husband said this morning he would not have chosen this way to die. I am very encouraged when some of you say you have been doing this for 3 years-I think. To see this extreme fatigue and scary shortness of breath go on and on is so tough and its only been a few months . We believe a transfusion is imminent but WAIT (again) for blood work. I rarely cry but did yesterday then read 20 pages on acceptance and serenity-amazing there are some things I cannot change and may as well get on with those I can.

this has been a really good week for my dad. Since December he has had probably over 50 units of blood and recently took a real dip and started having to have 3 units per week and 1 unit plts. this week his numbers held fairly well comparitively. We didn't think he would make it 2 weeks ago. Really up and down illness here. Dad was only diagnosed in March this year but looking back he has probably had it more like 4 yrs. not alot of treatment available to him as he only has one kidney and chemo would hurt that too more than it already is.

I am happy to see everyone here although not the reason I like to socialize.

My mother was diagnosed Nov 2008 after almost a year of "anemia" problems. In case it helps with someone else to know what numbers can be had and still function enough to drive, here's her stats.

Aug 2009 in hospital for a week with pneumonia, 1st transfusion 2 units of packed red cells, Oct 2009 transfusion 2 units, Dec 2009 transfusion 2 units, 12 Jun 2010 transfusion 2 units, 2 Jul 2010 transfusion 2 units, plus 2 units platelets
9-14 Jul 2010 in hospital for urinary tract infection and transfusion 2 units.

Nov 2009 first of monthly chemo (Vidaza, 2 shots/day, 5 days, followed by 5 days of Neupogen). May 2010, increased chemo to 7 days

I've only been keeping track of her numbers since mid Apr 2010. Whites (s/b 4.0-10.5) have ranged from 5.2 in April, down to 0.7 during last week's hospital stay. Reds (s/b 3.80-5.10) range from 2.86 to down to 2.17. Platelets (s/b 140-415) range from 99 down to 12

While she still drives to grocery store, pharmacy, chemo, doctor, and weekly lab work, she usually only does one or two of those a day as more makes her too tired.

"Dr Vampire" as she affectionately calls her blood doctor, told her this last hospital visit that it's time to get on record what various measures she does and doesn't want. She's been putting off that decision but has said she is ready to do so. We're getting together today or tomorrow and work on that and updating her will.

If "will to live" counts for anything, she will make it past her 83 birthday Nov 1st, as her sister died at 83 and she's determined to outlive her sister. Her spirits have always been, and still remain, quite good, even when she's exhausted.

She has a wonderful gal in two days a week for cleaning and laundry. The newest goal is to fix up the spare bedroom for her to spend nights whenever Mother goes to hospital, as my stepfather has Alzheimers. Violet has taken care of Alzheimer's patients before, but the "foot in the door" was a general cleaning as Mother didn't want to admit she needed help. Now she says she couldn't do without Violet.

Fortunately, I'm self employed, so when I need to drive her because she isn't strong enough, I can work my schedule to accommodate hers. Also fortunately, she now admits when she needs help.

I've rattled on for my first post, but hope it shows others how she still functions ok, even with low numbers.

Forgot to add that she's under strict instructions to head to the ER whenever she has a fever that hits 100, since she's got nothing with which to fight infection.

well it looks like my dad's good week is at an end. he got 2 units of blood on friday and he has gone downhill again. I hate this rollercoaster we are all on!

Best wishes, I have hated roller coasters since I was a child and this is the worst of all. Take care of yourself as well. Do hope for some comfort for you and him.

I am so glad this string for caregivers was started! I have been reading this forum since Birdmom started her new member post about 1 years. I havent logged on for awhile and was truly saddened to hear about Chris. He was around the same age as my father (almost 75) and truly inspired my expectations of quality of life for him.

My father was diagnosed with MDS around November 2006. At his last appointment his counts were: WBC 1.5, HCT 18.9, HGB 6.4, HCT 18.9, and PLT 105. His platelets have actually gone up since he started this whole thing but his white and red keep going down. He started getting transfusions probably close to a year ago. In the beginning it was every 6 weeks. He now goes in about every 3 weeks. The Dr. mentioned Vydasia several months ago but nothing since. Any suggestions?

I have done extensive research but I dont think either of my parents really understands this disease. All they know is he gets tired and needs to stay away from people who are sick. I dont know how much to say because I dont want to scare them. His Dr. finally got tired of me asking about his counts and started giving him a printout to give to me.

It saddens me just seeing them get old but for my father to also have this is heartbreaking. He has always been such a go-getter.

same with my dad hon. always did everything he wanted. he has lost so much weight already. I too get the printout on his numbers 99% of the time. I think you have to sit them down hon and let them know how serious this illness really is and what he would want. Dad said right off the bat he did not want the chemo to which I totally agree with in his case. He only has one kidney and it is not at full function. Cost was also a factor for him.
Good luck hon. Hang with us and together we can all make it!

This site helps me so much...it is my husband and he is about the same age as your dad's. It is such a roller coaster, with his counts going up and down, this spring his counts were down and they were going to start chemo, that day they were up. He was told he couldn't work in the garden which is his passion. Counts were up so was told to go ahead and put in his garden. His blood is tested every two weeks and we haven't heard anything, so I guess they are staying up, he don't ask and don't want me to ask, he said if they are down they will call him. Anyway, thanks for being there, it's hard not knowing what will come next. Do I make plans for when he isn't here or just worry about it.....Janet

hon I play things in my mind constantly. fortunately I know dad's counts every week now. or at least every 10 days. it really depends on each week. Dad opted not to do chemo since he only has one kidney so time is short right now for him. Let your dad do whatever he feels he can. I know for Dad losing his independence is taking it's toll on him.

I don't know whether it was a coincidence or effect but hemotologist recommended Vitamin D and daily multiple vitamin. Weight stabilized and appetite improved after losing 10 pounds in 3 weeks and he started at 145.

What a wonderful forum! I was one of the primary caregivers for my mom before she passed in 1981. Back then, MDS was even rarer, and it took over a year for her diagnosis. She had several blood transfusions over the remaining 18 months of her life. I moved back home with my young daughter, and cherished the time we had left.

In 1999 my dad was diagnosed with MDS. I moved back again, and became his primary caregiver. In addition to transfusion-dependent MDS, he also had congestive heart failure and insulin-dependent diabetes. But he insisted on staying in his home until his death in 2006. He outlived the odds, and just missed the approval of Revlimid. He was stubborn and tough, and at times I just wanted to quit, but I am grateful to have had that extraordinary opportunity to grow, to heal, to forgive each other, and to share his final journey.

My prayers and thoughts go out to all of you here. I know what it's like. Blessings to you!

hi camp and welcome! I hope you stay around here with us. I am so sorry you have been thru this 2 times. My dad has mds and honestly not sure what to expect. he has been transfusion dependent since dec 09 but wasn't diagnosed until march 2010. it is a roller coaster for sure.