Living with MDS

He is doing very well now. The confusion from the infection is subsiding and the sodium is leveling out but he continues to go several times during the night. But he is able to walk around our block now without his walker. So I hope we are on a steady coarse now. Will continue to limit our interactions outside of family but will mask up and go see family.

Thank You so very much for doing that!!!!

Brenda, I moved your recent post to your existing discussion about living with MDS (myelodysplastic syndromes). You're asking great questions. I'm tagging members @lorieafoote @smetzing @jrwilli1 @nbadry @rrivory @honeymae who can share their experience with treatments and what tests or symptom changes led to their needing a change in treatment or how long they've been on watch and wait.

I'm sure you've read this already, but just in case, here is info from Mayo Clinic about diagnostic testing and treatment https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980

His being up so many times yea probably due to old man prostrate but currently on urea sodium packets to help increase his sodium and these cause him to go more. Hopefully won’t have to take these forever. Just 4 x last night. 👏🏻

Probably an "old man's" prostate... I will be getting an ultrasound in elarly November.

What causes the 5-6 times getting up at night?

That is so wonderful, although it takes a lot of courage. But hopefully being close to familly will make it well worthwhile. I kid about the fact that my not abnormal 5-6 get up at nights, are a great "excercise". But being tired as you are, makes it all difficult. Enjoy the day tomorrow.

Thank you for your encouragement. Well after him being up 8+ times last night I decided we were still going to drive the 2 1/2 hours to see our grandsons soccer game. Yes I’m worn out and going to sleep now to see what tonight brings. But I have to keep him hoping to do things and keep up his spirits. The grandson didn’t know we were coming and he was excited to see us. 😘

Hello @jrwilli1,
I am sorry that your husband's situation is so difficullt. I can only suggest that from my brief time with MDS, it does bring nothing but uncertainty. I was diagnosed one year ago, and must admit feeling pretty discouraged, even depressed, and expecting a relatively quick "exit". I am 76. But over the past few weeks, I simply decided that I was going to live another 10 years. I am too old to get a transplant apparently, but in any event, I will keep living... So I encourage the two of you to hope for the same, and even more! I thus encourage you to follow the medial advice at this time...

He has been out 1 week now and slowly getting his strength back. With his sodium still being out of wack the medication makes him still get up a lot during the night so we are both exhausted. We are just taking each day as it comes. Thanks for asking.