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Jerry
MemberPatti …
Debbie and I will be thinking of your MIL and praying for her numbers to come up so that she can have the port procedure that she needs. We will also pray for a recovery to better times for her. Good luck.
Jerry
MemberNeil and Jeff …
Thanks for the suggestions … will try them if I drink a little Miller Lite before letting Deb try the stomach …
Jerry
MemberCaroline …
Debbie gives me the shots in my arm and even though we warm it for 1/2 an hour it still hurts. It hurts when the liquid goes in as if it is really thick or syrupy. My former Procrit shots, also given by Debbie, barely hurt at all. I get Neupogen every two weeks and it hurts about 1/2 as much as the Aranesp. BTW, the first Aranesp shot I got was by a nurse and it hurt just as much.
Do you think it could be because she dulls the needle on the counter when I am not looking?? LOL!! Any suggestions?
Jerry
MemberHi Jeff …
I too sleep a lot but frequently my sleep is in the form of naps after a fairly good night’s sleep. Your HGB is obviously low at 8.5 when the low average for men is over 13 … my doc at Cleveland Clinic tells me that sleeping so much is my brain’s way of shutting down my body so that the brain will get the oxygen that it needs to function. If the oxygen is used doing other functions, the brain needs more. You asked about the fatigue. I also take Aranesp (hurts like crazy!) to help the reds, but if I were at 8.5 of HGB I would need a transfusion of a couple of bags of A Pos blood. Hope this helps a bit.
Jerry
MemberMaureen …
SUPER numbers …. with his Hgb that high he must want to go play golf or jog a bit … keep it up … good luck …
Jerry
MemberFran …
Debbie and I cruise a lot … when I was younger we did not mess with trip insurance at all but since I have been diagnosed with MDS I have the same worries as you do about booking in advance … on our last cruise, our travel agent found us a travel insurance policy that covered ANY cancellation including pre-existing condition problems … it was more expensive, but not prohibitive considering the cost of the cruise … maybe you could look into such a policy … Good luck ….
Jerry
MemberDennis …
I think Marla is really onto something about worrying. My Dad taught me that if you have a problem to worry about there are 2 things you can do. 1. Fix the problem and not have to worry about it any more. 2. If there is nothing you can do to fix the problem, quit worrying about it because there is nothing you can do about it. So, a convoluted way of saying that worrying is an unnecessary waste of time and effort. (Now, I am gonna worry that this made no sense in writing!) Hope this helps a bit. Now where did I put that Pink Panther movie?? Hmmmmmm…
Jerry
MemberD …
I wear a necklace and a bracelet with info on it … only problem is that my son who is a cop tells me that medics don’t always read them … hope I am well enough to tell ’em that I could bleed to death from a mild cut …
Jerry
MemberHey Dennis …
I used to continually think about this too until I found that filling my day with other things took my mind off it even for a little bit. For example, I go to the pool and watch the kids and enjoy their frolocking … Debbie and I buy movies (current one to watch is Pink Panther with Peter Sellers … “that’s not my dog !”) and try to amuse ourselves. I really enjoy myself when I cut the grass on my tiny John Deere and I try to take as much time as possible doing it.
When we travel, I rarely think of this … so go up to Sedona and look at the Red Rocks …
Enough from me … Jerry
MemberMaureen …
Just for the other perspective … my docs at Cleveland Clinic just moved me from once a week CBC’s to once every two weeks … I am thrilled to not have to drive all the way down to the docs office and lose a little blood in the process … I need to make and keep as much as I can … Neil is right, talk to the doc and go with what you feel is best … Good luck …
Jerry
MemberD …
There WILL BE a long run ….
J
MemberDennis …
I have traveled to Hawaii and to St. Martin with counts similar to yours (my Hgb was actually lower) and each time I caught a cold. I assume it was from the plane. So, I decided that no matter how stupid it looked, I would get a mask for the next trip. I have also seen air filters that you hang around your neck which are supposed to provide you with clean air.
I also agree with Jimbob … I pay guys to carry my bags (unless it is just one roller) and I move more slowly so that I don’t take a chance on getting cut. However, Debbie and I carry band-aids and I wear a bracelet that tells medics that bleeding could be sorta serious for me. (I think it says “bleeding = life threatening”).
I refuse to let this disease keep me confined to my house. But, each of us has to make that decision for themselves. Good luck.
Jerry
MemberShari …
Dennis has done it again. Completely stolen my thunder. (LOL!) I agree with him 100%. I certainly would ask your Dad’s doctor for his opinion, but I would be reluctant to change without a very good reason. Good luck !
Jerry
MemberJoy …
I do not know much about Medicare, but did you explore Neupogen (same as Neulasta, but shorter acting) and did you ask if your shots would be covered in the doctor’s office. If you have explored those options, I would contact the MDS Foundation (log-in page here) and ask for help. This cannot be the first time this question has come up. Good luck to you.
Jerry
MemberBety …
The blasts in the bone marrow are diagnosed through a bone marrow biopsy and the blasts in the blood stream can be determined with a blood test. A patient is generally thought to have leukemia when the blasts are greater thasn 20% in the bone marrow. Hope this helps a bit.
Jerry
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