Newbie with MDS

[Caroltri]

Hi everyone:

I have been lurking on the site for a couple of weeks and now have officially registered. I was dx last month with MDS as I was preparing for Total Hip Replacement in May. It was cancelled the day before because my blood levels were all over the place. I was insisting they were low because I had donated blood for myself prior to the surgery and I had a really bad swimmer's ear infection the month before. No one was buying the story that I was spouting. So after more blood tests and a BMB I was dx with MDS. I was promptly sent to a specialist to see if I could be a canidate for a sibling stem cell transplant. After the appt I was deemed a "perfect candidate" for transplant. Considering that I'm "healthy"and have no symptons outside the fact that I need a new hip and have can have my 2nd cataract surgery when ever I want, and glaucoma stemming from steroid use 25 years ago to treat RA and Graves Disease. At the initial appt my sister and I were tested to see if she was a match and lo and behold on Tuesday of this week found out she is a "perfect match". I thought I had time but I have now jumped on the transplant train and had pre-transplant test yesterday to submit for insurance approval.
I was planning on doing a charity swim in the SF bay for cancer research on September 25 but told I shouldn't plan on it. I have my next appt on July 19 to address the transplant the doctor told me we should move quickly because of my complex chromosones.

[ann]

Best of luck to you on your transplant. God bless.
ann

[Neil Cuadra]

Caroltri,

It sounds like this is happening at a dizzying pace. I know several patients, including my wife, who expected to have more time to prepare for a transplant, but had the doctors tell them "let's go, the sooner the better." It can leave your head spinning.

It's lucky that you had the blood test in which they discovered your low counts, lucky that your sister is a perfect match, and lucky that they consider you a great candidate for a transplant. But you can't depend solely on good fortune to get you through your treatment, so be sure to ask lots of questions (of your doctor, or even here in at Marrowforums) so you'll know what's going on and why. I think that well-informed and involved patients have the best outcomes. They "make their own luck."

Please let us know how next week's appointment goes. I hope we can be part of your support team.

[Caroltri]

Thanks Ann and Neil:

You have already been a big support! Reading the stories has been awe inspiring, you realise you are not alone that many people have and will continue to make the journey.
As you can tell Neil, I'm a little challenge, posting twice while I try to add the signature line that I created but failed to get it on the post. How do I do that?
I have my list of questions ready to go and keep adding to the list. The doctor has been very responsive and assuring to my emails. I have gotten alot of answers by reading the post and have done quite a bit of research, so much that the original hemologist/oncologist kept telling me to stay from google but I add narrow my dx to 4 items and MDS being one of them.
Hey I'm excited I added the signature line! I take great pleasure in the little things:)


Carol