I have a new birthday!

[4bcsboys]

After 7 days of medium intensity conditioning,I received my transplant today. I'm tired and slightly dizzy,but all is good. I am so grateful to the anonymous donor who went to the OR to give me the requested marrow.

[sstewart09]

Happy new birthday!

[SLB]

Happy birthday.. and good luck with your journey!!

[Neil Cuadra]

Congratulations on your new immune system, and congratulations to that anonymous hero.

Even with "medium intensity", seven days is a lot of conditioning. I hope it went OK.

Please let us know how things go for you. We're on your team!

[vickij]

I have a new birthday also. After 7 days of chemo, I had my transplant @1 am on June 25 th. It took the cells longer than expected to get here. I am so grateful to my donor. The nurses & staff here are great.
We will be able to keep up with each others journey on here.

[4bcsboys]

Happy birthday to Vickij!

I understand things are going as expected for me, no bumps in road at present. My goals today have been to keep ahead of the nausea and to eat something. Eating a whole yogurt was so exciting!!!! (It may be one of those "had-to-have-beeen-there" moments.)
Also eye coordination is slow, which I didn't expect. Why did I pack so many books? Maybe for later.
Thanks for your encouragement! The nurses here have been great!

[NLJabbari]

Congratulations & a Happy Birthday! Looking forward to following your journey and praying for a smooth and quick engraftment.

Do you mind letting us know what kind of match you had. 10/10, 9/10?

Thanks

[4bcsboys]

I was very fortunate to find a 10/10 match. Actually, there were several in the database, so the hematologists had the luxury of using other markers such as age, gender, etc.

[4bcsboys]

Yay! My platelets have risen on their own. Minor increase in WBC today, tomorrow's test will show if it's a real increase. MAYBE home before weekend

[Sally C]

Dear Vickij and bcsboys,
You are both so brave and strong. You are an inspiration to all.
God Bless,
Sally

[Cheryl C]

Congratulations to both of you. I hope it all goes well. Your positive attitudes are inspiring!

[4bcsboys]

My hemoglobin was 12.9! It hasn't been that high (without a transfusion) in 6 years.
The most bothersome problem at this point is an ongoing gagginess. Sometimes I do vomit, but mostly I fight it. It seems that slushies and water ices go down easy, so I forsee becoming good friends with my blender. Any other suggestions? Water feels like lead in my stomach. Eating small meals, trying to avoid a completely empty stomach.

2 weeks until next appointment--I get a week off!

[Cheryl C]

Peppermint tea with a little honey if you are allowed to have it, can be quite soothing for nausea.

[4bcsboys]

Thanks,Cheryl. I've also found my blender crushes ice very well and I can add a few drops of flavoring.

I found out this morning than all my blood is male in the sample from last week--100% engraphment! What a joy to share with my husband on his birthday.

[SAA Mom]

When you feel up to it, ginger is known to decrease nausea. Ginger Ale might be something you can sip on. As you feel better I have heard that Ginger Snaps can be very helpful. Great to hear that you are doing so well

[vickij]

Congratulations on your engraftment. They haven't told me if mine is engrafting. My main problem has been pain and numbness in my arms & legs, they can't seem to find the cause. I don't have any problems eating but I don't have much of an appetite & most foods taste like cardboard.
My blood counts have been good, hmg 8-9,white count & platelets going up every week.

[4bcsboys]

Today I'm 118 days old. I developed skin GVH which went to 2nd grade. We are VERY slowly tapering steroids to prevent it reflaring like it did after the initial short burst of steroids. So, I'm continuing all the prophylactic antiinfectives, including the activation which tastes like tempura paint. Yuck! But it's better than PCP pneumonia, which I've helped treat before.

Overall, I've had it easier than I ever had any right to expect. My children are happy and adjusted, even though they continue to ask when I will be completely better from the transplant. The family has learned to depend on each other more and realize that we each have a role to play, whether you're a parent or the youngest child (7).

This is definitely a journey, and not one for wimps.

[Cheryl C]

Well done, 4bcsboys and vickij! You are in my thoughts and prayers.

[Relentless Against SAA]

"

I developed skin GVH which went to 2nd grade. We are VERY slowly tapering steroids to prevent it reflaring like it did after the initial short burst of steroids

".

Hi 4bcsboys,
Congrats on things going so well. What an amazing gift: someone who is willing to give their bone marrow is truly a hero in my book!
Question: tell me about your GVHD of the skin. How did you first notice it, do they think it will go away over time or will you likely always need steroids?

[4bcsboys]

Dear relentless (live your pen name!!),

The skin GVH started about 3 weeks after I got home, I think. It started as a itchy rash on my wrists, under my breasts/upper abdomen, and in leg creases. Because it was NOT on My palms and soles, the on-call hematologist that saw me was more inclined to call it a skin fungal infection. We treated topically along with the oral I was already on. It continued to spread and before the week was out I was on steroids and making another trip to see my hematologist (fortunately both mine and the one who was on-call were both in the office that day).
I digress, it started as a red, bumpy rash--not always but not bright,but reddens with heat or flushing. Then it has turned a darker, almost tanned color, and the skin dries. Some areas (toes have turned almost purplish rash in the knuckles). Then the peeling begins; this is like dry flakey skin, not coming off in sheets.
Before we got it controlled with steroids, the itching was maddening and would wake me up at night.
We are having to taper the steroids very slow because more rapid dose decreases exacerbated my symptoms.

BUT, I know I'm very fortunate not to have ANY GI symptoms of GVH.

[Chirley]

I haven't had a BMT but that sounds very much like the reaction I have to copper. Starts our red, angry, itchy and burning. Then turns gradually brown then dries out and skin flakes off. It never quite goes away and then I'm due for copper again and it all happens again. This one is about 3 inches by 3 inches and it's been two weeks since the last lot of copper. I have them on my arms, front, back, buttocks and thighs. Oh, and one on my face.

[4bcsboys]

I got a message from my hematologists office that my bone marrow sample from a week ago is "normal." Well, if male bone marrow in a female body is normal, I'll take it! Now just to deal with the fallout from the treatment. Yay! No MDS!

I'll see the hematologist tomorrow. I suspect he'll want to go down on my steroids again (as planned), but I'm dipping into the Benadryl the last few days. We'll see.

[Neil Cuadra]

Originally Posted by 4bcsboys

I got a message from my hematologists office that my bone marrow sample from a week ago is "normal." Well, if male bone marrow in a female body is normal, I'll take it! Now just to deal with the fallout from the treatment. Yay! No MDS!

I'll see the hematologist tomorrow. I suspect he'll want to go down on my steroids again (as planned), but I'm dipping into the Benadryl the last few days. We'll see.

This is great news! With a little help from your donor, you've shown us how to beat AA and MDS! I hope tapering off the meds goes well and that effects of the treatments will fade.

[Whizbang]

Congrats 4bcsboys!!!!!

God bless and only the best on the rest of your journey....

[DebS]

That is awesome news! You are definitely a success story! Congratulations.

Please keep us posted. We LOVE to hear success stories!