New Member

[BethW]

Hi Everyone, My husband just got his diagnosis of MDS yesterday. We talk to the doctor tomorrow about treatment plan. I’m 65 with 16yr chronic illness and my husband is 68 better than average health until now. We have lived long enough to know each day brings it joys and troubles and that we will move past the fear we feel right now. Glad to find this group and hope you can all put up with my questions and whining until I adjust to this strange named disease. Sure does seem frightening and technically challenging looking at the internet info. We surely do need your support folks and hope we can offer support to all of you too. Beth

[Zoe]

Beth,
Welcome to the group. I am glad you were able to find us. What type of MDS does your husband have?

Zoe

[choijk]

Welcome Beth. I am a new member to this forum too and I can tell you that you will find support, encouragement, words of wisdom, and most of all, love, from everyone on this forum. It is a scary experience but continue to research and try to learn as much as you can. I would be more than happy to share what I’ve learned thus far with you.

[Alice S]

Beth,
Welcome to the forum. As June says it is a scary disease because we in general have never even heard of it. But it time, armed with information, support on this forum and ‘time’ you will be able to get on top of things.
Take care of yourself as a caregiver, you have to maintain your strength, not only physical but mental for both of you!
Alice

[jaxem]

hi, beth
welcome to the group

my wife & I are in your age group & I can sympathize with what you & your husband are going through. snoop around the forum & come back with your questions. I learn a lot from it!

[BethW]

Thank you all for your replies and welcomes. My husband’s type is RA but we don’t know much else right now. Some tissues were sent to the Mayo Clinic for the genetic and ? part. Not back yet. He got his first red and white boosters last Wed and having some light fevers, lower body pain and light bleeding gums last night. Why do these things always happen on the weekend? Our next appt next Wed. In workup they discovered a tumor on the kidney so we are being directed back to same hospital for what to do about that. Frankly I am even more scared now.

I haven’t checked back here with everything going on and thought I would be notified if a reply was made to my message. I must not have clicked the right thing. Just happened to check this morning. Love to all of you for reaching out to me.

Beth

[eve]

beth

please don’t regard any fevers as light – they must be attended to immediately or before you know it they run out of control – ask the doctor what temperature warrants a trip to the ER

my dad was instructed to go to the ER with any temperature over 100.4

good luck
eve

[Sandy M]

Hello Beth,
you’ve found a very caring and knowledgable family of forum members that have either been through what you’re going through and folks who have had to learn so much so quickly about these class’s of disease, but we’re all here for you

[faith’s daughter]

Hello Beth,
Life never is what we expect, is it? I’m a caregiver to my mother who’s in your age group. I too have a chronic illness. I was having some new symptoms and my husband insisted I keep my doctor appointment. My doictor recommended yoga and to avoid stress. 2 hours later we got Mom’s diagnosis and because her house was being remodeled she came to live with me and my family. So much for avoiding stress!
Welcome, take a deep breath and hold on. Don’t worry about learning all our names–just know that we’re all on an incredible journey together.

[Author]

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