Thank you for the Welcome. It will be nice to actually talk to people that understand really what we go through with side effects of anemia. Sometimes I think people look at you and think you don't look sick. Mds seems invisible on the outside. Although I first notice something was wrong when I looked in the rear view mirror in my car and my eyes looked lifeless to me.
Had my blood test today my count is 8.3 and anc is 1.0. Just was transfused last week.

Saw my Dr today My anc is 1.0, hct 8.8, platelets 171 not so bad. I found out this week 2 of my sib's are almost perfect matches and 1 unrelated donor 100% match. See transplant doc on Friday to find out how to proceed.
Other than that Happy fathers Day to all the Dads here.We are having a very small cookout Sunday

Laura

Hi Laura,
I am so happy to hear that you have found a donor. What wonderful news! Good luck with your appointment on Friday and let us know the next step. God Bless all of us.
Jean

Laura, that is exciting news! Keep us posted.

Jean, I love your photo.

Hello everyone,

I often read but do not always have time to post. Welcome to our new members and I am so sorry to read about Posh's dad passing. I am holding steady with a hemoglobin of 12.5. I often feel bad when the numbers are suppossed to be good. The fatigue is what gets to me the most but i keep on going. Hope everyone is well and keeping cool as it is very hot in the Atlanta area. Be blessed and try to stay positive.

LaDawn

Just a note: I watched the video for "Blessings" and it was very inspirational. I enjoyed it alot. Thanks for sharing it.

LaDawn

Good to hear from you, LaDawn. Hot, yes--about 103 on my trip to Fresno for my blood draw/shot.

Not happy about my Hgb--9.7, a new low. But lately the numbers have been bouncing up & down a lot rather than just a few tenths. I don't understand this, but oh well.

How's everyone else doing?

Hi all,

Chemo week here again. Will also have to get a transfusion Friday. RBC 2.9 and HGB 7.8. Thought I could wait until next week after the chemo but huffin and puffin to much so moved it up. I had about a week and half of low grade fever then another week of night sweats. Other than it smelling like a locker room around here everything is fine. The doc said that even though the counts, compared to normal (I've never been normal) that I'm at least maintaining or holding steady for now. I.E the glass is half full and the ole leaky boat is riding higher in the water LOL.

LaDawn Blesssings is a great song. If you get a chance listen to Grace also. That one is the story of this ole boys life. Basically in spite of all our goofs , if we keep seeking His face we will walk through it all together.

A couple more days of the ole chemo juice mixed in with a couple of units of hi test and I should be good to go LOL

Have a great weekend everyone.
God Bless
Mike

Hi everyone. Hope your are feeling better Mike. I'm still getting the Arnesp shots every two weeks, but my hgb level has been dropping lately, with the latest at 8.8 I am very tired and short of breath, but doctor says no transfsion yet due to the Red Cross having a shortage of blood. Emergencies only. My next appt. is the July 5th. I had hoped for a transfusion so that I could enjoy the long weekend. Oh well! :o(
Sorry if I sound like I am complaining, but I'm just a little low today. I should feel better after my afternoon nap. Take care everyone and keep writing.
God Bless

Thanks. I ended up having to wait until Monday for the transfusion as the day surgery unit was booked solid but got two units of hi test. I'm at the time when the WBC will be at it's lowest after chemo so other than dinner this evening with family am pretty much just hangin out. It was interesting to find out that we have "bugs/critters" in us that our immune systems keeps at bay in a normal world but if the WBC gets real low they sometimes get the upper hand. Doc suspects that's what happened with last fever bout. So far only a couple of minor night sweats so keeping fingers crossed.

God Bless, feel better all and have a great weekend.
Mike

Jean, you are allowed down days, you know. We all have them. With your Hgb count, I'd be feeling pretty low too. Here I was complaining about 9.7, and you're in the 8's!

Then there's our Mike, who's toughing it out big-time.

I hope everyone has a great Independence Day.

Heck Birdmom, I dont' know if I would call it toughing it out. Your right we all have our down days. I get up each morning, put my feet on the floor, thank the Lord and ask what's next. I have to be honest in there are some days I ask back REALLY Ary you sure Lord ? LOL LOL And He says yup and takes my hand and off we go. That makes the "tough" if there is any a whole lot better. And when I"m down just because I earned a down day He just sits there with me and gets me back up again. This Thursday I felt the very nearest to normal that I have felt in a very long time. Had an extra thank you there and yesterday and today.

It's all good and just right. I had three weeks or so with various fever junk but hey gang, you know how your appetite is witih a fever, so I lost just over 10 pounds -- and according to those in the know I needed that and maybe some more LOL. So even when it's not good it's good. And I've managed to keep the reduced eating level down so am probably losing more.

What really sucks about this junk is the care we have to take around others. Yesterday our daughter called (we were supposed to meet her and the kids for dinner) doubled over in stomach pain. They had sprayed her apt the day before and her dog eveidently got into it and died so she was afraid she had been affected too. She was headed to the ER. The end of the week after chemo my WBC is always in the mid to sometimes low 1's which means ER's are big no no's so we had to wait to hear from her. Had masks, gloves, etc ready to go but she called and was headed home. Turned out she had a bad reaction to some extra tylenol she had take with her other meds to get rid of a headache.. Used to be we would have been in the car headed that way. Now we have to take a bunch of caution which don't get me wrong, I'm still here and enjoying life but there's lots of things like that which are the real part of toughing it out..

Keep bailing gang. The boat is riding high in the water and doing great. Have a great weekend all

God Bless,
Mike

Hi Everyone,
Glad to see everyone is holding up. Mike sorry you sound like it's pretty tough for you. Looks like know one got a 4 of July holiday blood. Jean I wanted blood before the weekend to. I'm waiting for next thursday I was at 8.5. My ANC at .6 got thrush in my mouth. The pharmacy isn't open until Tuesday!
Go next week for some more test and consults as they have chosen my sister as my donor. Don't know a date for SCT yet soon though.
But I will enjoy the weekend. Happy 4 th of July everyone.
Laura

Hello all leaky boat occupants. Read your comments quite often but haven't replied in sometime. Mike, I am so sorry to hear about your situation. I haven't started taking chemo yet, Doc wants me too but I am still putting it off. At this time I am on aranesp shots and blood transfusions a little too often. Have you been told that when you start on that chemo you cannot quit? That is my concern. Oh well, hope everyone has a nice 4th of July.

A clarification needed. It would appear that many think I am in some sort of dire situation or suffering through something. I have shared my counts, and some concerns such as being a new germaphobe LOL with you all just so folks have a view of someone elses path. As for toughing something out or having a bad situation life is good here. My WBC, for the past year or so has been, as a normal in the ones, my last one just before chemo, was at 2.9. My platetes have been as low as 30 and the last one was almost 90. Now for normal folks, of which I have never been accused he he, those counts are obviously low but for me they are better than in quite a while. My last BMT showed my blasts had dropped from 23% to 16%. Some folks look at 16% and feel bad but w/MDS at 23% for the last three years I've kept on trucking along. I've had 125 Dacogem chemo treatments and have not had nausea, hair loss, in fact other than the chemo fatigue in the week after the worst I've had is the plumbing getting clogged up and a couple of times with a bit of fever that cleared up fine.

Bottom line is like I said we all have our days that we don't feel good or even get down in the dumps, but compared to other folks fighting cancer, Alzheimers, Aids our soldiers and their injuries, and so many other really nasty diseases I'm doing fantastic.

So if I came across as being some really tough or bad position then I shared wrong. We all would like to just not have this junk but when I look around the world at all the suffering, and things so many go through compared to how good I have things and most the time how good I feel, less the fatigue junk, I realize how blessed I am.

Again I just try to share my experiences with you all as a part of our support for each other. Everything is going fine. We're all just one germ away from tough times but it's all good.

God Bless all
Mike