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willie
MemberTia My wife’s sores were treated topically with Neosporin but I don’t think that they would have had a solution for an internal issue other than prednisone. You can get on a Sweet’s website but her family doctor had to look it up since he did not know what it was. In my opinion, your grandfather was probably unlucky. I know that that is not a very satisfying statement but that is all that we were given. Willie
MemberTia My wife was originally diagnosed with Sweet’s and prednisone was the only apparent treatment. It was a precursor to MDS and 6 months later the sores outbreak came back. Throughout those 6 months all 3 of her blood lines had been decreasing and a BMB determined that she had MDS. Her doctor said that she could have had the disease for 15 years and it just now manifested itself. I would encourage all who have Sweet’s to get a BMB. Willie
MemberJ.claire My wife was given a life expectancy index of 3 1/2 years if untreated. Your doctor can give you the same info. She opted to go for the transplant when we knew her brother was a match. She never looked back as it was described to us as the only potential cure. I wish we would have been given info on more of the sustaining options but I do not think she would have had it any other way. Her % by the way was set at 70% for success to 1 year. She never doubted her desire to go for the potential fix. She also did not pay attention to the numbers either. She was 55 and on the cusp but the good centers will deal with the age. Willie
MemberKristy My thoughts are with you and your family. You and your family will make it through this tough time. Willie
MemberArmansa I think that all of us are angry at some point either at ourself out of guilt, family that do not seem to care or at our loved person who has the bad luck to have these diseases. The anger may go away only to come back in another way at another time. I cannot do anything about the family or friends who did not care enough through the last 21 years let alone the last 2 yaers. I will move on without them and so will you. It is very natural for you to feel sorry for your brother and angry with your father. You may find that you will become angry at someone that you do not know about now. Patsy is right, I believe, that time will help get through what probably will not ever heal. I also agree with you to live every second effectively even though I do not always manage to do it. Look forward to your next few steps and do not worry too much about those you will take in a couple of months.
WillieMemberKWJ Your dad couldn’t be at a better place. Did they tell you how long the overall stay at the SCCA will be? I know it is hard but try to get a second caregiver to help. You do not appear to be far away but when you are housed in a condo by yourself all the distances seem far. Good luck to him. Willie
MemberArmansa It may be that your brother had a sense of what was going on in his body that those on the outside wouldn’t know. Do not hesitate to talk out your feelings with your family, his family and your friends. There are people who are willing to listen to you even though you might think that they wouldn’t want to. Willie
MemberKaren That is pretty terrific news! Willie
MemberGloria I cannot begin to tell you how I can cope. I think that I am just numb. My grieving started when Terry was first diagnosed 1 1/2 years ago. Pror to that she had Sweet’s. When her regular doctor told us to see a hemotologist/oncologist, I knew we were in for a rocky road. It was really tough on me and I think my wife was strong and positive for both of us. Now I am lucky that my work has been very understandinf for the past 1 1/2 years and continues to do so. It keeps me somewhat busy and connected. I try to shut out the memories where I think I could have done more and concentrate on the good ones. I truly do not know how I will progress without the other 1/2 of me but I know that I will.
Your family and friends will really help you. Do not be afraid to talk about your loss and the memories you had – it will help. WillieMemberJack Good luck to you! You may encounter some speed bumps but plow right through them. There are many aspects of your healing that will occur in the next 3 months. Willie
MemberGloria I am very sorry for your loss. Willie
MemberFran You do not need to ask for forgiveness. What you have been doing is very tough. I will continue to hopr for the best for both of you.
WillieMemberEngel Have the doctors done any scans (chest) to see if there are any nodules in the lungs. This is a fairly consistant marker of a fungal infection – which is tough. If he is not responding to the antifungal he might be on now ask if they can change to or add a different antifungal. Remain as tough as he has been. I am hoping for the best and my thoughts are with you. Willie
MemberKWJ Call the SCCA. You will get a return call from a doctor who will question you as to what is going on. That doctor will give you a realistic opinion on an SCT. They appear to be willing to take riskier clients.
WillieMembermaureen Have him get the BMB. It is somewhat tough for the 10 minutes and is sore for the rest of the day but he will get more definitive information.
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