This Is Jersey Guy

[ramey2148]

Sorry I have not been posting. I was having alot of trouble with my mouth for a while but just started eating (THANK YOU LORD) They have me on all of theses meds now that make my hands shake and its tuff to type so I kind of let you all down. I am sorry for that. I did have Braylon Edwards from the Jets donate $1700 and he gave me a signedd Jersey. Go to Lehighvalleylive.com and they did an article in the paper.
As for how I am feeling. I am still posiitive and reeady to beaat this disease. I have some skin GVHD that they medicate me for that makes me not be able to sleep to well. I go to the Dr. twice a week and we are starting to get that under control. I need to get some strength in the legs yet. Folks when they tell you to walk you need to walk. I know I have a LONG road ahead and am ready to continue the fffight. I expect ups and downs but thats how it goes. It made me feel gooodd to know peoople on the sighgt were still wandering how I am doing.

[Mary4Mike]

Bob,

SOOOOOO glad to hear from you again! I was beginning to imagine the worst. Just read the write ups about your Braylon Edwards signed jersey and donation……pretty special treatment.

The mouth stuff will get better…..really. You have really taken a nosedive on the scales……if I read the article correctly, you have lost 65 pounds!!!! Mike lost 40 and a year later he has kept it off. I am sure that you want to gain some of yours back. It took quite awhile for food to taste good again and Mike preferred cold food for a long time. He drinks a LOT of water because of dry mouth, but it isn’t as bad as it was at first. Your hand shakes reminded me that Mike had that also, but it is gone now. That could also be from weakness.

One word of advice. If you notice ANYTHING different or changing, tell your doctor immediately. It will most likely be GVHD and the sooner they can get on top of it the better. I am sure that they have told you all this, but really, anything…..rash, bump, dry eyes, itchy eyes, stiffness, soreness, ……get the picture???

What do you take for immunity suppression…..Tacrolimus? Did they send you home with an arsenal of scripts? Antifungal, antiviral, stomach meds, gall bladder meds?????? It really does get better and better and better .

So glad to hear from you and keep up the good fight. You are in my prayers.

Mary

Is this DAY 49?

[jimkufis]

Hi Jersey Guy. Jim Kufis here. Its good to hear from you. When you get through this fight and knock out this disease you are going to be my hero. The fight you are going through is the toughest I have heard of but due to your initial physical conditioning and young age the odds are on your side. I believe that God is in your corner and that you will be better soon. Keep your spirit up and believe that you will win.

[simplistic007]

Jersey Guy, I am so happy to hear from you. We were all worried and concerned. Save your strength and concentrate on getting better. You are almost there. Thank you for taking the time to keep us posted throughout this trial period. God Bless You and stay strong. Look forward to hearing from you with more good updates soon. For now our friend, rest, and leave the rest to God. You are in good hands.
Ciao,
Simplistic007

[ramey2148]

Mary yes they do have me on tacro and all of the other meds you stated. I take 15 pills just to start the day. Thank God I have great health care insurance. I do want to put on at least 35 pounds. I still have to fight the bad guys when I go back to work so I dont want to be to light. To everyone else thanks for caring and all of your support and I hope everyyone has a GREAT DAY. My hands are shaking too much to type anymore but I will be in touch.

[Kenneth_In_Va]

Good to hear you are doing Ok! You should have signed up for the Biggest Looser before you went into the Hospital, just kidding! Keep up the good fight. We are all pulling for you Bob.

Gene In Virginia

[Rachael]

Bob,

I’ve been following your thread for awhile now and have been really impressed by the way you’ve managed your MDS journey. There are many of us that don’t write on a regular basis, but those who do their words inspire us with hope. Keep up the good fight Bob.

Rachael

[heather de boer]

I think your state of mind has a lot to do with how you fight illness. I send you my best wishes, and thank you for letting us all know how you are doing, it is a great help.
Kind regards, Heather.

[ramey2148]

Went to the DR. today and everything looked great. I actually tried to golf yesterday (BIG mistake). It was my 33rd Birthday and I have no leg streength too be trying that. Lesson learned LOL… I have to stick to just walking around the block. They are starting to drop the amount of steriods I am on now so guess we will see how that goes. Other than that they didnt change much. Hope everyone had a GREAT day and haves a GREAT day tomorrow.
Bob

[Mary4Mike]

Bob, Happy belated birthday! What the heck are you doing trying to golf??????? Must be part of the recovery process…..pushing oneself. At about the same time out from transplant, Mike went out and cleaned the gutters on the house. THIS did not please the doctors because of the possibility of exposure to mold. Keep up the walking around the block and don’t push yourself too hard.

YOU, have a great day.

Mary

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