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Dawn, I signed the petition. The video was so heart breaking and brought tears to my eyes. I have a friend with a little girl who is 6 who suddenly came down with a fever and petechaie. Took her to the doctor right away and she has aplastic anemia. She’s had several tx’s of platelets and doesn’t understand it all. Our heart breaks when little children suffer. I pray God will give you strength and thanks for the petition.
Dee

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Light the Night Walk in Portland turned out good. This is the first year I had to miss because of weather and health. I was all ready to go but….. They raised $250,00 that they’ve tallied so far and are hoping to get to $285,000.

Dee

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I will definitely put Chris on the top of my prayer list. I know from experience that prayers are answered and I will pray for God’s healing hand on Chris. Don’t give up. Dee

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Stacyl, I would rather have a port. A friend of mine has one and loves it because people can’t tell you have it and it’s painless to get the blood or take blood. She said about 1 1/2 hrs. before her appointment, she applies a little lidocaine cream (called Emla) and she doesn’t feel a thing. Dee

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Chewgie, My husband could surely relate to what you are going through with your dad. Six years ago after my stem cells transplant I just kept going downhill. I was in the hospital so much with infections, pneumonia, etc. I had gone from 120 lbs. to 74 lbs.and the doctor couldn’t help me because I wouldn’t help myself. I am normally a very happy, upbeat person but this just wasn’t me. I believe so many people praying for me is what caused me to start on the road to recovery. Having a wonderful husband helped and those sweet grandkids. My doctor says I’m a walking miracle. I think what really got through to me was how much I loved my family and I didn’t want them to hurt anymore. I will pray for your family and your dad. Dee

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You guys are all so helpful, you bring tears to my eyes. Dee

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It sounds like your husband is not easy to get to the doctor and is in denial about his problem which makes it extra hard on you. I know my husband had to deal with me not wanting to do things either because I didn’t want to admit I could now have MDS. Lots of luck to you.

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Hi Sandy, I know what Mike feels like about being poked so many times. I’ve had the needle left in too since I was going back for more transfusions, but the third time they had to find another vein. I almost cried esp. when you go with the discomfort to save getting poked again. My platelets were only 2000 and hgm 8 when I had to go to the hospital yesterday. We didn’t get home until 11:30pm. Had 2 units of red and 5 of platelets. I was pretty wiped out when we got home. I sure don’t want a Portocath. but the ones that have them say they love them and you don’t see them. Good luke to Mike. We sure have to learn patience, including the spouses that are with us. Diner

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Ensnee, Thanks for your encouragement. I have become a stronger person through all of my problems and appreciate each day more. We planned on going to church yesterday but I woke up with Petekiae all over my body and whishing sound in my head. Called my doctor and woke him up. He sent me right to the hospital and we didn’t get home until 11:30pm last night. We sure have to learn patience and my husband, Jerry sits with me all the time. My platelets were only 2,000 and my Hgm was 8 (which was causing the head problem). Got 2 units of red cells and 5 of platelets. Am feeling much better today. My doc said we are going to take this treatment with caution according to my body. Jerry doesn’t know how to use a computer but like Hans, I tell him everything and he’s very interested in what’s going on with everyone.
Diner

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Hi Chip, It’s hard enough having our problems without worrying about how to pay expenses. I sure hope some of the good suggestions have helped you some. There’s a lot of helpful people on this forum. God bless. Diner

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Eve, Neil, Kathryn, Jules & Sandy, Thanks, thanks, thanks for getting right back to me on my delima. I knew in my heart I’d have to call the doctor but it was so early and I was led to the computer to get on the forum for comfort. I almost cried when I saw your replies so fast. I waited until 8am to call my doctor and he sent me right to the hospital. We were there until about 11pm last night. I got 2 units of red cells and 1 bag of platelets which he said is equivilent to about 5 units. The doctor came to see me and said I may have to start having 2 tx’s of platelets a week until they build up. I am not going to get a Vidaza shot yet and I’ll have to have platelets high enough to put a Portocath. in. He still thinks the Vidaza will help me but we will go at our own pace as my body allows. I am not a very big person but pretty strong. ha Oh, my platelets were 2,000 when I went in and my hgm was 8. He said that’s why I had the rushing in my head. Thanks again everyone!!! Diner

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Ensnee, I’ve only been on the forum since Sept.
I try to keep you all in my prayers. I didn’t know there were so many people out there with similar problems. I sure hope Hans does well. I know what you mean about waiting around just to get some platelets. My husband took me to the hospital for 1 bag of them. They said to be there at noon and I didn’t get them until 10pm that night. Normally I go to the Infusion Unit and they take care of me right away, but their not open on weekends.
We are leaving now for more platelets and red cells. I am normally an up person and very happy but this can sure put a damper on my spirits sometimes. Take care of Hans.

Diner

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Sandy, I haven’t posted to the forum a lot but I was just reading again about Mike. I started my Vidaza in Sept. also. My platelets and red cells are way way low (platelets 3000). I was told by the doc that I will have this problem for awhile until the Vidaza start working, if it’s going to. I woke up this morning with Petechaie all over my neck, arms, etc. and couple of blood pockets in my mouth. I called the doc at home and my husband took me in for blood draws and now we’re leaving because the blood bank called and said my platelets and red cells are in. UGH! Does Mike have a portocath in. I’m thinking of doing it since I’m running out of veins to get. I have to get platelets up of course before they’ll put it in. Good luck to Mike. Diner

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Sarah,
I pray you have good success with Charlie on your trip.

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Hi Kathryn,
I saw your message about doing Light the Night Walk. I have always done the one in Portland, Oregon but was unable to this year due to rain. It was the first time it rained at our walk and the first time I missed. It is uplifting to go and I usually run into one of my doctors I had at OHSU and a couple of the Infusion Unit nurses. I’m sorry about your dad. I also lost my dad a couple of years ago but he had been in pain so much but died peacefully.

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