Gayle, I am also so sorry to hear of your loss. Lou has left you many memories that can keep him alive in your heart. Share with all of us your memories and the wonderful life you lead while Lou was still here on earth. We will meet again soon in our next life. God Bless.

Dad is not doing so good. his plts went down to 7k and heart rate down to 25 today. he is at the hospital right now getting blood and plts will get more plts tomorrow and more on thursday. his bp went up to 179/117 so they had to decrease the flow rate to try to get it back down. not good guys. I am so worried about him.

Hang in there posh. I'm sorry to hear about your Dad's status. My Mom had something similar to what we have and her instructions to me were to keep her smiling and laughing. As hard as it was at times with all she was going through and my feelings I don't regret one moment because all my memories of the last couple of years are of the enjoyment of life we had together. I know your doing the same for both of you. You know by now this ole leaky boat crew along with our God are walking each step with you and your Dad.

God Bless
Mike

Mike you are right and I could not go this journey without you guys and God walking with me. :)

Posh, hope for the best & prepare for the worst. You & your dad are in our hearts.

Lost a little more ground on blood count, back down to 10.3. Still not too shabby, & maybe next time it will pick up again.

Thoughts and prayers to Gayle--

Keep learning new things about this interesting MDS. Am curious whether you have the same information or different. Blood transfusions in our hospital are charged by the hour.
Aranesp last month was good for anemia, this month it is NOT but may help kidney disease. One hemotologist thinks it is good, the other does not recommend. Medicare will not pay for Aranesp if Hg is above 10. The charge is $1078 for 200mg.
8.3 hg for a male is low but may be good for a female.
If you want DNR you must make it specific each and every time that you enter a medical facility.

Gayle and Mocha,

I am so sorry to hear about Lou. My heart and prayers are with you. I know you will miss him greatly. Please continue to post as often as you want, you will always be a welcome addition to the Leaky Boat crew.

LaDawn

Posh, keeping you and your Dad in my prayers as well. Keep your head up and know that we are here for you whenever needed.

LaDawn

Mary, I'm still receiving Aranesp thru Medicare (when Hgb is below 12). That could change at any time, of course, especially with this lousy economy.

So far, I have reacted well to the shots, but just like the health rules, that can change at any time too. I've been very grateful for the benefits of this drug, but today I feel like I did at first--very tired & a bit muddled. Don't know if that indicates my Hgb is falling even more, or whether it's just an aberration. I see the oncol a week from tomorrow.

I too am on Medicare and the AARP/United Health care plan J supplemental. So far since March with the two combined I've not had to pay anything for doc visits, chemo, bone marrow tests, blood and platalet transfusions or the surgery last week. It's been excellent coverage so far but of course it's all based on what Medicare will pay which I have fit into. The plan J runs about $190/mo but obvously is well worth it.

You should check with the National Leukimia society as they have reimbursment programs for out of pocket expenses and for medical premiums.

I'm starting to get back to some normal from chemo week along with the port surgery last week. The did give me two units of platalets just as a precaution and all went well. Still have some of the ole chemo fog but working out of it.

Gayle and Posh you both know your still in all our prayers. Keep on keepin on, we're rowing right along side of ya.

God Bless all,

Mike

I am so happy to find this support group. I've always been a little bit anemic, but in the last two years it has gotten progressively worse. I've been under the care of an oncologist for about a year to monitor my blood. Recently hemoglobin count reached a low of 8.1 so I had a bone marrow biopsy. I knew something was very wrong because I was constantly exhausted and out of breath no matter how much I rested. Got the results ten days ago, with the diagnosis of myelodysplasia. Received a transfusion two days later, which kicked in and my count was up to 10.3 a few days later. The following week I received a shot of Aranesp and am scheduled for another shot in two weeks. I feel ever so much better and I am hopeful for the future. Thanks for listening and I look forward to new friendshipsl

Welcome aboard nanajeano. We're called the Leaky Boat Crew but as you'll see with all the support, love and prayers you'll find here we are all rowing together and this ole boat will never sink.

Your scenario sounds a whole lot like mine was. Most of my counts were down, not just the red and hgb. I too was exhausted and out of breath but have a great oncologist who with my high blasts recognized I had MDS instead of full blown AML. There is plenty of the future to be hopeful for. One doc who looked at my reports only gave me 3 months or less. My oncologist and I are now headed for the three year mark. The blood levels while having dropped a bit are still basically staying steady. In my case I'm on Dacogen which is a chemo. Several others here are on the Aranesp.

You'll surely make a lot of friends here. They along with God will walk each step with you and are here for you.

Have a great weekend and God Bless,

Mike

Nanajeano, welcome to our leaky boat! As Mike said, we all row together here.

You & I are about the same age & have about the same Hgb count (now that you've had treatment). As time goes by, tell us a little bit more about which group you fit into & what some of your other counts are.

Posh, how are you holding up?

Gayle,
My thoughts and prayers are with you at this time.
Take Care and God Bless,
Janet

birdmom I am holding up ok for now. I roll with the tide it seems. I spent yesterday with dad and we had a few laughs at our own antics or mishaps I should say. We made good memories though. I have been watching his white count slowly go down the last few weeks. last thursday it was 4.8 and monday down to 4.1 so I guess that means he is no longer making cells. just a matter of time now.