Frank is in hospital.
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July 3, 2005 at 2:56 pm #7052frankParticipant
THANKS SUZANNE,
BASICALLY I ALREADY THINK IN THIS WAY, just a time issue now. i sill had a 102 fever yesterday, but it can controled, sometimes i don’t think it will make big different for these common effction, my home is 65 miles away from Johns Hopkins, and i really don’t have good experience with them in the past, unless i have to see them every 3 months(in a chance they may have some good program i can join in), i told them about my staph infection through email, the responce from my Doc there is: “it is pretty common for MDS with a staph infection…”. they may tell me the truth, but i didn’t expect that leeter.
currently, all the doctors in my local hospital is trying to figure out my situation(the oncology groop is a good groop, some docs have 20 years experience), disease doctor took banch blood sample for virus exam, and i have to had blood transfusion tonight(less than 2 weeks), i am lossing ground on the disease, an i don’t think they have any idea what is really happen to me.
just try to grap one day and one night, fight with the unknown, i think i will be beeter, and i will come out from this.
thanks everyone.
Frank
July 3, 2005 at 3:05 pm #7053SuzanneMemberHave they checked for a fungal infection in the lungs? That caused an on going fever for me.
July 3, 2005 at 6:13 pm #7054KathrynMemberFrank, I’m thinking of you and wishing you a quick recovery.
Hugs to you and your family,
Kathryn
July 4, 2005 at 3:03 pm #7055frankParticipanthi, everyone.
yes, they did all kinds of checking(including fungal, lung, heart…), all is negtive. currently they move to the virus infection, send lab for 10 or 20 virus tests, but the result cannot come back in 4 days. the other thing may be is the vancomysin reaction(when the concentration of the drug build-up in your body, reaction happened), i may be the very small group people responce this way, especiall my whole body bloody drug rush is a sign. they already replace it 3 days ago, and accidently my fever begin go down(102) from 2 days, and i experienced the first night without fever yesterday, it must be a good sign. my cough is still, but not severe like before.
first July 4th with my twins, but i have to stay in hospital. from this experience, i have no excuse to keep them by my side(my wife is already exhuasted on both side), we will send them back to China after their birthday. it is a difficult decision, but i already have no choice.
happy July 4th for everybody, i respect everyone here fighting for this disease, you are not a patient, but a fighter in the unknown…
Frank
July 4, 2005 at 4:47 pm #7056pattiMemberFrank,
You have a very difficult decision on your hands. Perhaps you could wait awhile until you send your girls to China. Right now, they are keeping you going and fighting. Babies need their mommy AND daddy. Sending them away seems so extreme. Would it be possible for a family member from China to come here and stay with your wife and help care for the girls while your wife helps take care of you? It would be better for both the girls and your whole family if you could stay together. I know it’s hard to leave China, but for a temporary health situation like this would they allow a family member to come? Please think about this and see if it’s a possibility.
Keep a positive attitude. I would highly recommend you see a naturepath or nutritionist to help on the natural side of things if you can. Stay around with us for awhile, will ya?
Patti
July 4, 2005 at 9:06 pm #7057frankParticipantthanks patti,
basically we already think in that way, but from the INS, we are easy to get my mom & dad in here, not my brother or sister. but my mom&dad and her mom&dad all is too old, not in good health, especially no health insurence, it is hard to bring them here. we try to talk a lawyer now to see if there are a chance for relative coming, havn’t gotten any answer. back in china, it is easy to find a good care for the babies.
it is so hard to say this kind of situation won’t happen again, and it is hard to see my wife going down with me and suffering. it is so hard to deal all things together at once.the good news is i may go home tomorrow, the final conclusion havn’t come out, but some doctors think it is the drug reaction. they took all antibiotics out today, and my temperature is stable today until now, 6 days damma may end soon.
i tried to see a nutritionist already, not a luck on it, as soon as i mention the disease, it seems i need to spend half hours to explain what it is.
Frank.
July 5, 2005 at 6:15 am #7058pattiMemberFrank,
We will continue to pray. Especially that you could get someone over here to help. I am glad you are at least exploring that option. Your babies need both you and your wife.
Find another nutritionist. Even if you have to explain the disease, they will help. Or you could just tell them you need supplements that will help build your blood cells (red, white, platelets) and foods that will keep you healthy. Maybe a naturepath would be a better alternative. Most of them will at least know how to deal with cancer which is really close when it comes to what supplements to take. If you’re interested in knowing what my MIL is taking, let me know and I’ll send it to you offline.
Hang in there.
patti
July 5, 2005 at 12:55 pm #7059SuzanneMemberFrank, I know you will do what you think is best for your family. I think the chinese culture may look at sending children away to family members who are more able to help a little differently then the American culture does. I am sure we all hope it won’t be necessary and that your condition improves but you and your wife know what is best.
July 5, 2005 at 2:56 pm #7060frankParticipantstill in hospital, coughing… i cannot sleep for whole night just think for what i will do next. no method at all.
it is almost confirmed that all these are cause by the drug vancomysin, even the cough is little like alergy… hope it will go away soon. without fever already made me feel much better, just a time to wait for going home.
thanks everyone…
Frank
July 5, 2005 at 5:51 pm #7061KathrynMemberFrank, I am so glad you are feeling better and will hopefully be going home soon.
You know, everyone has to do what is best for their own particular situation. I hope that the they will allow family memebers to come here for you, especially given your situation. There is no better medicine than a family’s love.
Well, take good care and keep us posted on how you are doing.
You are in my prayers,
Kathryn
July 13, 2005 at 7:10 am #7062martinMemberFrank,
You are fighter against MDS.Because You are from China,I am chinese,maybe you know my matter,my wife got RAEB-T in Mar.and stayed in hospital till now,and she had 3 round of Chemo.I am very worried about her body,she also had a high fever during 2 round Chemo.similar situation with yours,thanks to GOD,at last she recovered from high fever.now is in 3round of Chemo,it will be finished tomorrow,i do hope she will be not fever or infection!
By the way,now My wife also eat Chinese traditional herb against MDS.it’s not too bad,do you need information about this herb?just contact with me as following:
tel:0086 571 8723 8823
h.p.:0086 (0) 137 0581 7852
e-mail:wang@tronly.sina.net
I hope you are better! -
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