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Kathryn,
My dad was diagnosed a few years ago with diverticulitis. No problems once he started watching what he ate. Then when MDS came on, his diverticulitis flared up and they made him get a colonostomy (spelling?? a bag) He was undergoing a transplant and they told him once everything was done and well he could get it reversed. I’m not sure what happens if he can’t do surgery. I wish you luck.

Lori

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Carrie,
They should be able to give you the preliminary results soon. We would have my dads BMB done in the morning and then they would usually be able to tell us something by that evening. Please hang in there and keep us posted. I’ll be praying for you!!

Lori

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Butch,
I am so sorry for both of your losses. What a terrible day. Please try to take care of yourself and your girls. Don’t worry about being strong just be there as a family. I am sending lots of prayers your way.

Lori

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Butch,
That is truely an amazing story!! I think you both should email this to Oprah, she seems to love to help people in difficult times. Make sure you state in there that time is of the essence. May God bless you and your family in this difficult time.

Lori

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Concern
I am so sorry. I couldn’t imagine what are you going through. I am sending prayers your way for you and your family. Please keep us posted.

Lori

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Oh Kate,
I am so sorry to hear about George. Please know that we are all thinking about you and praying for you. Please take care of yourself through this difficult time and the road ahead of you.

Lori

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Hi all,
After a couple of weeks of the workshop, I find that all of these “lost” feelings, feeling like your “losing your mind”, anger, and guilt are the same with every person sitting in that room. Like I said, I lost my father, which is no where near the same as losing a spouse, but everyone has/had the exact same feelings. On one hand, I have learned that I am “normal” and on the other hand, all the chaos with the hospitals and doctors is the same everywhere. So I find myself being able to get past some of the anger that came from the doctors and nurses. We did address our problems and anger to them about our personal situation with Hospice, she was extrmemly upset and swore she would get to the bottom of it. In all honesty, its over, my dad has passed, nothing will ever change the fact of what a horrible situation we had so I’m not real sure what she can do for us. But we will see.
John, I did reccomend that book to my stepmom, she read it and liked it. I have it sitting on my desk to read next.

TAke care,
Lori

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Hi Butch,
I know your having a hard time and I’m not sure how to help you cope with any of that. But is there any one that can sit with her to give you a break?? I can’t imagine doing everything your doing and still holding down a job. My dad and stepmoms situation sounds a little similar. they got married (had been dating for 11 years!!) but finally decided to get married so she could have power of attorney and everything right before his transplant. I know she is going through a really rough time right now but try to keep in mind that the dr’s told my dad that if he had GVHD then he had a less chance of reacurrance. I know she is miserable but maybe there is a positive side to all of this horrible stuff she is going through. Try to keep your hopes up. I will be praying for that much needed honeymoon for you two!!

Take care,
Lori

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Hi Barbra,
I was wondering how you are doing. I wanted to let you and everyone else on the board know that Hospice offers a “Grief workshop”. I went last Monday for our first visit. I have to be honest with you, my dad passed away almost 8 months ago. After the first visit I am wishing we would have started it sooner. They do recomend waiting 6 weeks, but we had just heard about it. It might be good for you since you lost your husband recently. For me, it brought back so many emotions that I thought I had gotten through/past. We had a VERY HORRIBLE experience with Hospice (which we will be dealing with tonight when we discuss “anger”) but I have heard good things about this support group. I just wanted to make everyone aware of it. I hope your doing as well as can be expected. Please take care.

Lori

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April,
My grandma went through the swame stuff before she passed. I remember the one day I stayed with her while my grandpa had some errands to run. I was down stairs doing laundry for them when I heard some strange noises. When I came upstairs she was gone. She couldn’t move with out a walker and her chair was empty but her walker was still sitting there. Here, she was in the back bedroom trying to get a broom stick out of the closet because there was someone in her bedroom. She was so scared. I just kept telling her that I will get him. She was so afraid that one of was going to get hurt. Then she told me about a guy that was standing in her hallway. She said that he would sit and watch TV with her and sometimes she would wake up in the middle of the night and he would be sleeping on her couch. At the time we thought maybe the cancer had moved into her brain, or she was taking to much medicine. couldn’t figure out why else she would be seeing things like this. But when my dad was in his final days we read the book by Hospice and I realized what was happening. I’m sorry to say that she is getting close. I don’t know why it has to be so scarey. We tried to take comfort in the fact that the guy on her couch was her guardian angel. I will continue to send prayers your way. Try to stay strong.

Lori

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April,
I’m so sorry. My dad threw up all the time. As I told Barbra on another topic hospice told us to not push them to eat. In the beginning of the week he would get up and walk to the bathroom all by himself but by Wed. he started going in a bottle and then with in a couple days he wasn’t even going to the bathroom at all. He was in so much pain and we kept fighting wiht Hospice to give him somthing stronger. But he was in so much pain and so figidy. Even though he couldn’t move by himself there were times that the pain would bring him straight up all by himself. It was the most horrible thing to watch. I’m sorry if I give you to much details but I wasn’t prepaired to see everything that I did. and the fact that he was my father, the strongest person I had ever known made it so much worse. Hang in there and I will pray for you and your family.

Lori

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Barbra,
I don’t post much at all since my dad has passed but when we had Hospice come in they told us to let them know when he was in need of a transfusion. My dad was getting transfusions of blood and platelets every 1 to 2 days. and we were scared to take him home and him not get the transfusions for fear of him bleeding to death or who knew what else at the time. as it worked out he only lasted for a week and we never did get a tx. but I guess what my point is, is that we were told that we just needed to let them know. Also, I remember the nurse telling us not to force him to eat. It is about the only thing a caregiver can do but sometimes it just causes to much stress. they will eat when they want to. My dad lost so much weight in that last week that he was litterally a skeleton, a picture I will never forget. I’m sorry you both are going through this. But you need to figure out a way to get hospice involved and make sure they are there with you. We had a very bad experience with hospice. But this isn’t something you need to figure out or deal with on your own. They have liquid forms of medications if you need them (I had to fight to get them but they do have them) I will continue to keep you both in my thoughts and prayers.
Lori

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Hi Carrie,
I’m sorry that your going through all of this. I understand the “borderline depression”, it seems like ever since my dad passed I have been the same way. Can’t seem to get out of bed, running late to work at least 3 out of 5 days a week. When I’m at work I can’t seem to concentrate on my job, my work habbits are slipping…I completely understand. I am not sure how you feel about this but what about taking out a home equity loan on your house? you can usually get it at a pretty low interest rate and can usually take it out for 5/10 even 20 years. I just bought my house 4 weeks ago and after I closed on my loan my loan officer told me that I am now eligable for a home equity loan. Because I did put money down I already have equity in my home. Like I said, just a suggestion. Please feel free to vent any time, everyone has been through so much, dealing with MDS and also on personal levels, I think that is what makes everyone feel even closer. Please take care of yourself.

Lori

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I’m sorry to hear about your mom. My thoughts and prayers are with you.

Lori

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April,
I will be praying for your mother in law and all of you. I’m sorry that this is happening.

Lori

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