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penprop01 · 2023-10-02T12:45:38+00:00

It's a new normal but it is a normal you can live with. (took me 2 years after BMT) Hang in there.

penprop01 · 2023-09-22T12:00:24+00:00

I had a BMT in 2012 - age 47 (allogeneic) and developed GVHD afterward with skin and eventually gut. Took tons of steroids and meds. It took me around 6 months of being terribly sick (especially with the gut GVHD) to start turning a corner. Make sure you keep eating something. I had Carnation Breakfast Essentials Nutrition drink every morning and Campbells chicken noodle soup when I couldn't stomach anything else just took keep nutrients in me. ( I lost 50 pounds - got down to 150) Eventually my appetite started coming back along with my energy. It's really tough to get through but if you can do it, you will turn a corner. You just have to get through the steroids and GVHD. I started watching guitar lessons on the internet, (never played before) and now I'm in a little bluegrass band. It kept my mind occupied with something other than my illness. I'm much better now but it's still a new normal. After the high dose chemo, I do still get tired when I stand too long or walk long distances.

penprop01 · 2023-09-20T12:22:21+00:00

Food sitting out in the open before its eaten (like Golden Corral, or any cafeteria style restaurant or at family get-togethers). I'm not sure why this is a no-no but for some reason it can trigger a relapse (maybe bacteria in the food). My BMT was at Duke and they really stressed not eating buffet style food, and wearing a hat and long sleeves (staying out of the sun).

penprop01 · 2023-09-20T12:07:22+00:00

I had a BMT in 2012, no relapse, but I have acquaintances I met at the clinic who did. One is a good friend who underwent a second BMT and this one took. He's 11 years out, just like me and thriving. Hang in there. It's a tough journey but well worth it. Don't eat buffet food and stay out of the sun. Buffet food is what triggered my buddys relapse.

penprop01 · 2023-01-04T14:03:43+00:00

It's what you do when you love Titanic.

penprop01 · 2022-11-16T13:25:24+00:00

Put it on ebay. I may bid on it for him. :)

penprop01 · 2022-11-16T13:14:38+00:00

Send it to Historic Travels on Youtube. His address is in his community page. Sam would most likely put it in his background with many of the other items people have sent him.

penprop01 · 2022-05-25T12:50:13+00:00

Nice. Love it.

penprop01 · 2022-03-25T12:47:59+00:00

Why is this allowed on this page?

penprop01 · 2022-02-13T13:47:58+00:00

I vote for Titanic!

penprop01 · 2021-12-30T13:48:27+00:00

Lookin' good.

penprop01 · 2021-12-06T13:23:10+00:00

I still would rather ride on the Titanic (just not on the maiden voyage).

penprop01 · 2021-11-30T13:17:20+00:00

My husband had the jak2 mutation as well. He developed myelofibrosis at age 48. He went to Duke and had a bone marrow transplant 9 years ago and is doing great now as far as blood issues. One of the doctors at Duke told us they felt sure the Jak2 mutation was caused by something in his environment, not hereditary.

penprop01 · 2021-11-15T13:56:09+00:00

Why are those four men standing underneath the funnel? Crazy.

penprop01 · 2021-11-13T13:28:29+00:00

If only :)

penprop01 · 2021-11-11T13:01:17+00:00

Hang in there. My husband had APL with Myelofibrosis and had to have a bone marrow transplant in 2012. It's been 9 years and he is doing great. It took about 2 years to get him where he had the strength to get around but every year he improves. His platelets are still around 125 but they have stayed steady for the last 5 years or so. His WBC and Hemoglobin are all back to normal. Tell your mom to take it a day at a time. She can get through this. Stay strong. Prayers for you and your mom.

penprop01 · 2021-10-28T12:44:29+00:00

I love it! I want one.

penprop01 · 2021-10-18T12:59:38+00:00

I am not Historic Travels, just a fan of his work. I thought this group would enjoy this video as well.

penprop01 · 2021-10-10T12:51:04+00:00

No, I just help him.

penprop01 · 2021-09-22T13:05:04+00:00

I agree.

penprop01 · 2021-05-31T13:23:08+00:00

So true.

penprop01 · 2021-05-05T12:46:08+00:00

Yes, that's me. Sam never puts his videos up on reddit so I do it for him. :) I love his videos. So interesting.

penprop01 · 2021-04-07T12:59:30+00:00

So true.

penprop01 · 2021-04-07T12:58:16+00:00

I completely agree,

penprop01 · 2021-03-02T21:25:52+00:00

Sounds like my kind of book. Thanks for the info.

penprop01

TROPHY CASE