[Laurie H]

Hi there, I want to tell you how sorry I am for your loss. My mom who’s account this is just passed away on 10/23/09. Her MDS turned into full blow acute lukiemia. She did chemo and it worked. She was set to come home 2 weeks after the completion. I went and saw her the day she gave me the news and gave her a big hug as I thought things would be ok. I then talked to her on the 20th and she was getting platelets to do a lung biopsy. She aquired a lung infection and within 2 days her organs too began to shut down and she passed away with me holding her hand and rubbing her head. I am devistated. I feel that she wasnt taken as seriously as she shoul have been by doctors and myself. I saw her as industructable because she always pulled thru. I plan to dedicate my life to her cause and wont ever stop helping others with MDS. I loved my mom, she was my best friend and Ill miss her.

[Laurie H]

I always get Benedryl via IV before platelets because I get hives. Even with the Benedryl I still get a few hives but not as big and not as many. From what they tell me, it is pretty common to have a reaction to platelets—more so than red blood cells.

[Laurie H]

Renee, Thanks for your post and my thoughts are with you and your families in dealing with all of the illnesses.
I don’t think anyone was deliberately trying to be mean to Cathie—atleast I would hope not.
MDS is treated so differently through out the world that I have read about treatments & procedures that I have never heard of since I began treatment in 2007 (had it about three years prior). Most of those questions have to do with infections—like don’t eat shrimp, don’t eat fruit without peeling, wash hands alot, don’t take certain antibiotics that kill of the good bacteria in your stomach. ect. It never hurts to wash hands but no one has ever metioned any of these other things. In reading these posts I have come to believe that it is just part of the protocol in each part of the world that ideas come from. Not to say that any of them are good or bad. Anyway, Best wishes to Cathie and your families.

[Laurie H]

This forum is indeed where you should be! In my experience it is the only place you can find people that are also dealing with the ups & downs of MDS on a daily basis. Often times our families just do not get it—we look normal on the outside –we’re a little more tired, have to go to the Dr. a lot, have transfusions but we don’t necessarily look "sick". When we don’t look sick, in their eyes, we are not. I don’t know whether it is denial or just not wanting to deal with it period. When I try to talk to friends or family and they are not reseptive I turn to the forum. I have even found that the Dr.s do not always know what it is really like to have MDS. They know how to treat it but they don’t really have answers when you ask them how to deal with getting through each day the best we can. All of you live the MDS life everyday, either yourself or a loved one and bless you for being involved and supporting them. It always makes me feel better when I browse through the postings–sometimes I post a reply and sometimes not but at least I know that I am amoung people who know and care.
Bless you All.

[Laurie H]

Katydid & all those with MDS,
You have come to the right place for information. While you are not getting a medical professionals take on your diagnosis, you are getting enough information that you can make an informed list of questions to ask. MDS even with in each sub-type manifests itself in so many ways—no two are a like it seems. I was given misinformation when I received my diagnosis which in turn delayed my need to search for information. When things didn’t add up and my health was going down the tube I began questioning. When I didn’t get the answers from medical professionals I searched the internet and what I found wasn’t pretty–it scared the devil out of me. I found this website and I spent days pouring over all of the postings and came up with a huge list of questions to ask simply taken from the experiences of those I read about. My Dr. said that I shouldn’t depend on this information but I disagreed. It was my feeling that Dr.s do not deal with MDS first hand and all of you have lived it so you know what you are talking about. Dr.s usually don’t go into MDS & all of its ugly little secrets…all the things on the side that can come up that can be related or caused by MDS. Each time I read new post I learn more and add more questions to my list. I have recently changed oncologist and the new one is very aggressive and not put off by my unending questions and need for more information. I question every thing they say and every form of treatment. I was diagnosed in 2007, however, I played the wait and see game for 2-3 years before that. Now that I have changed Dr.s I am more at ease about what to expect and able to make informed decisions about my health care. I am no longer afraid to ask questions and even more so, I am not afraid to hear the answers.—Thanks to all who post in this forum.

[Laurie H]

About your serious rash, twice I have had mysterious and severe rashes that after all biopsies were said to be "dermatitis"—just a fancy name for a rash and it means they just could find out what it was or what caused it. I had it from head to toe and I thought that I was going to go bezerk from the itching. It took nearly 2 months for it to clear up. The first time it wasn’t nearly as bad as the second. They also told me that it wasn’t related to MDS, however, my dermatologist told me that when your immune system is haywire you can experience all kinds of odd things like the rashes I had.

[Laurie H]

Sorry, the RBC number I gave was actually HCT.

[Laurie H]

I haven’t been able to begin Revlimid because I already had blood clots that went into my lungs after back surgery. I questioned whether or not I would be able to even try the Revlimid and was told that when the time came, I would be on a blood thinner as a precaution. From what I have been told it is not uncommon for the blood thinners to be prescribed along with Revlimid. Anyone else have any information about this?

[Laurie H]

I am not yet on Revlimid—trying to get to that point. I have had unstable HCT since last June with HCT at or around 25 sometimes lower and sometimes but rarely higher—usually after tx. I am having trouble with being winded all of the time—can’t walk far and now they tell me it may have had some impact on my heart. I would guess that they will be holding off on the Revlimid until they find out the condition of my heart.

[Laurie H]

Thanks for the information–I welcome all that I can get.
plantcollector I would like to compare notes with you and my email is on my profile.
This doesn’t have anything to do with MDS but I find it interesting that the first two person to respond to my post have plant related names.—Apparently, I wasn’t thinking clearly when I registered because I usually use seedlady or plants0000. So–are you plant(native plants for me) finatics like me?
I have to admit not knowing anything much about MDS when I found this website. I was pretty much taken aback when I read the posts.—It was a bad week to say the least. However, I have more information and I feel pretty good about it. I also have an appt.at the end of the month at OHSU in Portland,OR–the only center of excellence in our state. I hope they have given me a long appointment since I have two pages of questions to ask.
Zoe, I do know what you mean about getting discouraged and grouchy at family.
I also have severe degenerative joint disease along with the MDS. One makes me not able to get up and the other makes me too tired to want to get up! The treatment for joint disease actually made the MDS go balistic but without that incident Dr.s may not have been inclined to do BMB. The steroids to control my back pain suppressed my bonemarrow to the point I couldn’t do anything except sit like a zombie. I am still waiting for 2 back surgeries but my hematacrit is too low. I’ll look forward to any more information and email.
Laurie

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