What to expect before transplant and after

Hi

Everyone is different and some people will have different experiances but this is drawn from mine and if you have any questions please ask. I had Aplastic Anemia and my bone marrow was failing all lines down my whites were always around 1.9 4-9 is normal my hemeticrit was 28 when they gave me blood and 22-24 in 2 weeks i got blood every 2 weeks to keep me alive to everyone that gives blood your unsung heroes. And my platelets fluctuated from 7,000 to 15,000 ><

Unfortunately for me i had no match it seems our dna goes back to the dawn of time and of course mine was funky after going thru so much it was a blow to hear that. The great Dr’s decided to use umbilical chord stem cells or chord blood stem cells for my transplant. I only know it was a baby born in 2005 that saved my life with her umbilicol chord and her parents decision to donate it. Thankyou to them for this great gift they gave me. It’s a great thing that this option is available to patients it saves lives like mine that had no other option.

Going into the hospital they give you 2 hickman lines these are 2 headed lines each put in thru your chest just below the shoulder and pulled thru your chest above your nipple they put you out you don’t feel it and the pain meds they give you after make it bearable think of it as chest jewelry

Now each patient is different and depending on your cancer or diagnoses you may not have to have all the chemo or radiation i had to have so these are factors in your transplant but below is what they gave me.

They started me on 2 different chemo’s followed by 7 total body radiations 1 in the morning 1 in the evening the effects of this cause you to lose your tastebuds so eat what you want before you go in it will be a few months before your taste makes a comeback. Mine still aren’t fully back but i can taste a lot better now than then. You will lose your hair mines finally growing i have a shadow now on my head and thats after 4 months so it will come back. You will feel naushus but they give you stuff for that that works very well and you won’t feel like eating much but try to it’s important i lost some weight i drank a lot of chocalate shakes and yogurt and water. With your immune system knocked down to nothing your at the most risk for infection so they give you a chemical immune system while the transplant takes. Youll get some mouth sores and a sore throat during this time all normal you will make it thru this you have the strength and courage!! for the next week your weak you’ll lay in bed a lot they get you up to walk the ward but you really don’t feel like doing anything. Then slowly your graft takes and starts working and the dr’s let you know your progress. When your counts are high enough they let you go home. At home you will be weak from spending 3-6 weeks in the hospital. I was lucky and was in 3 weeks when you get home climbing stairs is hard when you take a shower your wiped out. After you rest alot the first month or so and then you start to feel stronger every day. That is how my new lease on life has gone so far and i hope yours goes as good as mine did.

When you get home the first milestone is 100 days at 100 days you get to eat food that you could not have after transplant. Your limited in the food you can eat after transplant just to keep bacteria out of your system believe me 100 days is huge you can get takeout food pizza fruit things you’ll be craving by then and your tastebuds will have a lot more taste to them then when you first got out. After i got out i lived on carnation instant breakfasts cerial like total and cheerio’s gatoraide for electrolytes only 2 types of filtered waters allowed for the year disanti or aquafina (grab the cases when there on sale stock up you go thru alot of it) t.v. dinners and i found these great chiccken sandwiches called pierres at bj’1 10 bucks for 10 individually wrapped chicken sandwiches they are tasty and have alot of protein in them i chow on them all the time still. Also soups are great to you have to cram even if you don’t feel like it your marrow needs protein and carbs for blood production and energy i also ate veggies i could microwave to. You will eventually feel stronger and better as time goes on. Another good thing i found was press and seal to wrap my hickman line for the shower they take out 1 hickman when you leave the hospital and you’ll have 1 for a while  the press and seal sticks then just tape around it and take your shower it keeps it dry then just toss it after instead of trying plastic bags and such.

It’s a scary process to go thru but you can’t think negatively you have to fight for your life back and you can do it. Don’t get me wrong i had my weak moments of breaking down in my wifes arms we all go thru that sometimes it overwhelms you. But you have to steel yourself to be strong and tell yourself i’m gonna get thru this i’m going to survive!!

I think it’s important to talk about your experiences the Dr’s tell you so much on what to expect but because everyones different your experiences can help prepare other people for this journey. I had some Graft vs host on my skin in the hospital legs back and arms i now have some on my face but with prednizone and ointment it’s alot better i know a little GVH is what they want to see and i know it takes 1-2 months to clear up thats what it took on my legs back and arms but it did clear up so i take this as normal things that happen after all it’s another persons stem cells that are doing the job mine was not. Is it not a truly amazing thing that they can do this to save peoples lives it’s an incredible science with some brilliant minds behind it. My big dream in life was to be a bum sit around watching springer and the judge shows and not have to work! I worked 6 days a week forever and now that ive had this downtime my dream is shattered!! I realize being a bum would get boring fast and now the judge shows are mostly repeats >< so now i have to think about what i want to do with the rest of my life. (chipindale dancer keeps popping into my mind but i realize humanity will never be ready for that lol )

Thats my story on my transplant i hope it answers some peoples questions and it will bring back memorys for survivors i’m sure

Please leave comments or questions if you have any.

My best to you all

Scorp37 AKA Scott