JERSEY GUY

[Zoe]

I could never figure out why they have to wake you for all those vitals. I mean they have machines hooked up measuring everything, can’t they just look at that? Must mean they like you and can’t get enough of your great personality. :^) Hospitals are not good places for rest.

Seriously, glad to hear your counts are good. You are doing great!

[ramey2148]

Mary if you can find out the name of the mouthwash I will ask for it. I am a little nervous of the stories I hear abouth the mouth sores.
They have been giving me medicine around the clock for nausea but I still get it. Alot of Ginger Ale and crackers to help out. Slept pretty good (for a hospital)last night for once. Hope today is a great day for all of us out there fighting the fight.

Hi Zoe good to here from you.

[simplistic007]

I have true respect for the strength and the way you are handling this. You sound optimistic and positive. My prayers and thoughts are with you. Thank you for taking the time to keep up in touch with your progress. God Bless.

[ramey2148]

Well now they have me on a drug called Methotrexate. I am only on a small dose because they used Atgam on me before the transplnt. I can’t eat any of this Hospital food but I am BLESSED to hhave a great wife who makes me food to eat. I have been walking Mary. Figured you would be happy to hear that. So far so good but I know there will be some challenges ahead. Just have to get through the next few months of some challenges for a lifetime of enjoyment. Hope everyone is having a good day today.

[Mary4Mike]

Sounds like you are having a better day today…….probably the better nights sleep. The mouthwash used as a preventive for the mouth sores came from the hospital pharmacy and the bottle says: Salt and soda mouthwash / ML 1000ML bottle (Sod. chloride/sod. bicarb ) Dose: 15 ML /15 ML
Route: PO
Freq: QID 0800,1200,1700,2200

The staff really stressed the use of this mouthwash ESPECIALLY after eating. Remember that not every one gets mouth sore. They have to tell you every possible side effect and you have to tell them immediately about any new "thing" that pops up so that they can get on top of it before it becomes a full blown problem.

Glad to hear you are walking. It helps to keep your mind positive and often you will see patients that are much worse off than yourself.

It sounds like you have a great wife, Bob. Does she have to travel very far to and from the hospital?

Did they tell you what the methotrexate is for? I don’t remember them giving that to Mike, but perhaps I have forgotten this. I would be interested in knowing about this.

Take care and keep up the good report!

[Mary4Mike]

One thing I didn’t mention is that Mike used the mouthwash religiously (even after he came home and still does once in awhile) and he never developed mouth sores. It is worth a try.

[ramey2148]

Mary,

I do have a great wife. She has to travel 1.5 hours (one way) to come and see me. Sometimes if another family member comes she will give them the food because she wants to make sure I eat.

The methotrexate is given to prevent GVHD. My dose is smaller (i think 9.8) because I was given ATGAM. The normal dose they give people after transplant is 18.

Thanks for the name of the mouth wash. I will ask my doctor about it tomorrow.

[ramey2148]

Today I am not feeling so bad. Mouth sores area a little bit of a pain but managable so far. Mary my doctor gave me a mouth rinse that has Maalox Plus, Liducaine Viscious,and Diphenhydramine in it. Seems like it works ok. They call it the Magic Mouth Wash. Other than that I am still only able to eat food that people bring in buts thats ok. While I am here its alot of Jello and Italian ICE. Life could be much worse, likr they could tell me I had no chance. Remember folks we have a chance and it is up to US to fight for it!!!!! it’s funny they tell you to walk (when you bearly have the energy, they tell you to eat, (and sennd out the crap they do), and they tell you to get a good nights sleep (when they wake you up every other hour. Oh well its all part of the plan.

[Mary4Mike]

Mike was given a similar mouthwash when he got mouth sores from doing Dacogen. They called it Ann Arbor mouthwash. Probably each center has their own recipe.:)

It sounds like you still have a sense of humor…….keep walking, keep eating, and oh yeah sleep tight!! The Italian ICE sounds yummy. They didn’t offer that to Mike, BUT there was plenty of JELLO, yogurt, ice cream, etc. The food never looked that appealing to me either…..just another incentive to work hard at going home.

Hope things keep going this good for you. Keep in touch.

[ramey2148]

Mouth sores are getting worse. I have rinses to help out but my throat is what hurts the most. It is making it hard to eat now so thank god for cup of soup and jello. Other than that I feel pretty good. My counts should bottom ouut tomorrrow and then starts the road to getting better. Well going to bed now hope everyone had a good day.

[simplistic007]

May the Lord continue to give you the strength and support you need. It sounds like you are a very strong person. This is what will make your healing process better. Hang in there. My thoughts and prayers are with you. Thank you for keeping us all posted. God Bless.

Regards,
Simplistic007

[ramey2148]

Today much of the same. I feel ok other than the mouth sores. They have me on a morphine pump and it only helps a little. I think i have bottomed out with my blood levels. There is only one way they can go now and thats up which makes me happy because that means one day closer to feeling normal again. Hope everyone is having a good day today and type to you tomorrow.

[Mary4Mike]

Bob,
Things WILL begin to look up now. Once your counts climb, you will feel human again. Have they given you neulasta or nuepogen yet for your whites and neutrophils? Maybe you won’t need it. They told us that the platelets are the last thing to return to normal and that proved to be true for Mike. At least low platelet count doesn’t effect the way you feel.

Our prayers are with you and your family. Discharge day is around the corner!!!

Mary

[ramey2148]

Mary,
I have not been given neuphedren but ia have been getting platelets. Besides the mouth sores i feal good. I expected much worse and maybe i just didnt get it yet but as for now I will not complain.

[simplistic007]

Jersey guy,

God be with you. We are hanging in there with you. Great attitude.
God Bless.

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