Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hello, everyone. I just joined your group & read everyone's posts. I was diagnosed April 2008, but know that I had anemia at least during the previous October, because I tried to give blood & was turned down.
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I am sorry to hear about your brother-in-law birdmom. I hope the transfer to a new facility helps him. I have been fighting a nasty stomach virus since july 4th weekend. I attended a family reunion in Houston and despite my best efforts picked up a bug from the little ones. Maybe I should have worn a mask. also went in for my doc appt and hmg is back down to a 10.7 so had an iron infusion.
I hope everyone is enjoying the weekend. Think good thoughts and try to enjoy the day no matter what happens.
LaDawn
The question has come up about the wisdom of receiving any type of live vaccine. A few members wonder if the vaccines worsened their loved one's MDS.
My family Dr asked me to check that out with the oncologist when I see him next (early August). I had asked my regular Dr if I should get the swine flu vac. Can any of the crew shed some light on their Drs' advice about this?
Regarding my bro-in-law, the outlook at the moment is grim. His oxy levels are dangerously low, & he either has pneumonia or his lungs are full of blood. They can't put a tube down for fear that he will bleed to death. He is on a full mask now, but will probably be intubated soon.
The hospital transfer was a good idea. My sis says she saw more Drs in one hour at KU yesterday than she did at the other the whole time. She has been assigned a social worker, and there's been some blunt talk about the outlook with both sis & her husband.
I have some thoughts on the new caregivers group that's been formed. Interestingly enough, many of us are both patients and caregivers. My husband has his own medical problems, and I support him, just as he supports me with MDS.
I don't have AML (knock on my wooden head), but I research it for my sis, so that she will have more information when she talks to his Drs. I'm sure many folks have similar stories.
LaDawn, is your white count very low? Chris wore a mask on his flights because of the risk of infection. I don't quite understand about your hemoglobin being down to 10.7, resulting in an iron infusion. I've never had an iron infusion, even when my hgb was in the 9's.
LaDawn I'm curious too about the iron infusion being related to your hg count. Mine has been around the 8-9 level for some time and was down to 7.2 this week and that was never mentioned. I've seen folks being treated for excess iron due to transfusions.
I've not become a total germafob but am more aware of my surroundings. I avoid anyone that looks sick. After seeing a couple of specials on the infectious germs left on things like shopping carts, food boxes and virutally everything I use a lot of care. We wipe cart handles and parts we would touch with a santizer or germX pad. We both regularily us germX on our hands especially if we shake hands with anyone. It's just become a part of our lives now.
Have a great weekend everyone.
Mike
My treatment has always consisted of iron infusions for my low hemoglobin (HGB). I know in the previous post I abbreviated it wrong. I have been told that my red blood cells and iron stores in my body are consistently low, even if my hemoglobin gets close to the normal range which is 13. My body does not make enough iron on its own nor does it store it well. Oral iron does not help. Insurance rules have changed based on recent studies, so I no longer can have procrit injections to help increase my counts. Studies have shown that if your body does not have a sufficient amount of iron stored then the shots are not helpful.
In the past, i was able to get the injections and only have iron infusions maybe 3-4 times a year. I now get them every 4 weeks. I have only had one blood transfusion and that was about 2 years ago now.
Interestingly enough, my white blood count was normal this week and it is always high (about 13.8 to 15 with normal being 4.8 to 10.8). It has not been in the normal range for about a year.
I started my Animal Studies course last week and I have a work experience placement at a Kennel and Cattery close by. And they have some gorgeous little Labradoodle puppies!!!! 8 of them. They're so lovely and cute u just want to eat them. It really made my day to meet them. Just wanted to share that...
This is me LIVING my life. Doing what I've always wanted to do. Thanks for the encouragement Captain Chris! Still miss u.
xx Jules
Jules, how wonderful! I often wish I had gone into animal care in some way. There's nothing like caring for another living creature to take your mind off your own problems. But do be careful about scratches and infection. Have you talked to your oncologist about this?
But please know, I'm not knocking what you've said Sharon. I appreciate your care. And I do need to take care. But everyone around me has had enough of my chronic health issues... including me! So I either have to give up, or move on with gusto!!!
Have a good week, my friends.
xxoo Jules
Rachael
We're off to Las Vegas in the morning to celebrate our 32nd anniversary. We got married there in 1978.
Gayle & Lou