Day 110

[evansmom]

Oh damn Laura,

So sorry to hear this. What will the next step be?

Thinking of you and saying some prayers as well.

[Laura]

Okay, so if I understood everything correctly....here goes....

I have 0% donor T-Cells (CD3) and 100% my own T-Cells. My CD33 (Myeoid cells) are 100% donor and 0% mine. These are the cells that make the blood cells....so why are my counts still low?!?!? The answer, some people just never have high blood levels. That is not satisfactory to me because their has to be a reason. I had such high blood levels right after transplant and I was told that was an inflammatory response causing that, which I don't quite believe. Anyhow so my whole blood is 70% donor and 30% my own cells. Right now because my labs aren't dropping they want to wait and watch. They are really worried if they put more cells into me, especially since I have 100% my own T-Cells, that it will cause such severe GVHD. So they don't want to give more cells until it is needed. So over the next two weeks they will see what my labs do and then in two weeks they will check another blood, CD33, and CD3 chimerism to see where we are at. If my CD33 starts dropping or the blood starts dropping more we might have to do the donor leucocyte infusion (DLI) to prevent things from getting too far. I am assuming that if things get too far, it could mean another transplant I would need.

It is all so confusing and stressful. Wait and watch and maybe need another transplant. Wait and watch and nothing happens and I live my whole live as a mixed chimerism, which he said he has only see one other person to be able to live with mixed chimerism and be okay.

Laura

[squirrellypoo]

Ugh more waiting!! And with two equally blah choices at the end of it. What a bummer, laura. I'd love to give you a big hug right now.

[tserdogan]

Hi Laura,

I see your position,and i see it is very hard.My labs also decrease today PLT(33),WBC(3),and hemo still transfuse.And i asked my doctor to chimerism(blood and bmb also).I alsowill wait and see protocol nearly ten days.If it will need,they put me more cells.All chimerism tests to 110 days is %100,now 150 days we will see......

[Laura]

Serkan,

Sorry to hear you are in the same boat. Your counts are much lower then mine so I shouldn't complain I hope that things come out good for you! You may have said this already, but where did you have your transplant?

Laura

[tserdogan]

Laura,
I was in Turkiye.My donor is my mother,she is 63 years old.Her blood type a+,mine is 0+.all my labs are low but my doc still positive,but l don't.My mothers age,abo group and gender may be the problems of not still healty engraftment.my doctor tells me you may have a little gvh.we will see ten days later after chimeri

[Laura]

Serkan,
Keep me updated. That stinks that your cells start aren't recovering. I hope it is not engraftment issues.
Laura

[Laura]

Tomorrow is six months since transplant. I just honestly can't believe I had a transplant 6 months ago.

My counts today were AWESOME.
WBC 3.5, ANC 1380, PLT 90, HGB 11.3

I hope that means my chimerism is well. It will be rechecked this coming week.

Laura

[squirrellypoo]

Wow those counts are great! What a nice boost for your anniversary.

[tserdogan]

Awesome counts.The good news of last two or three weeks i heard

[Laura]

WOW!!!
Today's HGB was 13!! The highest I have ever been since original diagnoses!! I am so shocked, I don't know what to say. Plt's are also 97!!! WBC 3.8 ANC 1350!!!

Hopefully this shows they are on their way to rising even higher!!!

It still feels so surreal that I had a transplant. I can't wait to put this all behind and start my new life.
Laura

[Laura]

P.S. I have had this nagging cough since November. I can't seem to get rid of it. Chest x-ray's keep coming back clear. So what is up?

[Ruth Cuadra]

Great counts, Laura! Congratulations!

Are you taking meds for high blood pressure? There are some that can cause a nagging cough that can't be otherwise explained. I assume you've been checked for the usual sort of cold/flu symptoms that are typical at this time of year and that it's not a lung or throat issue.

Ruth

[Laura]

Hi Ruth,
Thanks, I am so excited about the labs


I am not on any BP medications. I take PCN, Acyclovir, Lyrica, Budesonide, Potassium, Multivitamin, Protonix.

I don't feel like it is a cold but maybe I am wrong. It is just this nagging cough. Some days are worse than others. My doctor had me do pulmonary function tests. I got the results today but don't understand fully what they mean and will have to wait until my appointment next week to hear the verdict. I assume they are okay otherwise I would have been told so?? He had them done to see if that could show something about the cough.
Pretransplant results/ Sept results/Tuesday results
FVC 106%/104%/95%
FEV1 111%/103%/98%
DLCO 89%/82%/72%

Laura

[Laura]

So things here are good. I finally got my hickman out last week. No more iv Magnesium. Labs are looking great. Wbc 4 range, plts 90 range, anc 1500, hgb 12 range. I can't complain. The weirdest thing though is that they are testing me for asthma to see if that is why I have this cough that won't go away. I have never had asthma before. I was told that if my donor had asthma that it could transfer to me through the transplant. WEIRD. It is so interesting how the immune system works.
Laura

[Neil Cuadra]

Originally Posted by Laura

The weirdest thing though is that they are testing me for asthma to see if that is why I have this cough that won't go away. I have never had asthma before. I was told that if my donor had asthma that it could transfer to me through the transplant. WEIRD. It is so interesting how the immune system works.

Laura,

Your donor doesn't have serious asthma because if she did then she wouldn't have qualified to be a donor. But that doesn't rule out a lesser, more manageable type of asthma.

According to the donor health guidelines:

Asthma

If you have asthma that is exercise-induced or is well-controlled using an inhaler (including those containing steroids), and have had no attacks requiring oral (pill) or intravenous (IV) steroids or emergency care in the past five years, you are able to register to become a potential volunteer donor. If you have asthma requiring regular/daily use of oral (pill) steroids, you will not be allowed to register.

Your donor is anonymous but I wonder if the Mayo Clinic would be able to ask your donor's donor center if her records show that she has asthma.

[Laura]

Thanks Neil for the information. I'll have to ask about that at my next appointment.

The results show I have borderline Asthma. They gave me a albuterol inhaler to use to see if that helps.

Laura

[Laura]

So being central line free was short lived. I got a picc put in today for iv antibiotics. I woke up with my eye all swollen. They don't know if it is cellulitis or not. I have a trip to CA coming up for a week (leaving in a week). I hope I can still go.
Laura

[squirrellypoo]

Oh Laura, I'm sorry to hear you've got another infection, it's SO hard to feel you're going backwards after making some gains. In my experience, though, the PICC line was much easier to handle than a Hickman line, as it's in a better concealed place (get some of the stretchy bands from your hospital to go over it, too, and the line stays in place), the recovery from the insertion was way faster, the dressings were smaller and easier to keep clean, and the removal was really really easy and absolutely pain-free for me. And IMHO, any line is preferable to weeks upon weeks of cannulas!

Fingers crossed for your holiday! I know how much you must be looking forward to it - we haven't been anywhere since Feb 2008 and we're absolutely gagging to get away - anywhere! - for a little bit.

[Laura]

So it's official! I am heading on my first trip since June 08. I am going to CA. I am excited for the break. I was told to wear a mask on the plane and wash my hands good otherwise things should be fine. My counts today were awesome. WBC 4.9 HGB 12.4 PLT 84 ANC 1840. They are going to draw another chimerism in a few weeks. I got my PICC line pulled today as I am off iv drugs and my eye looks a lot better.

Laura

[squirrellypoo]

Hooray!! That's all fantastic news and great counts! When do you go?

[Vera W]

Where are you going in California? My BMB is still normal bone marrow. they had to draw more blood for the chimerism and my NP Told me that everything going on with me is normal. She did my BMB in a different spot, closer to my spine and it hurt less during the procedure but my hip really hurts and if I get too close to the spot it spasms. You guys ever have this? then to make matters worse I was lying in bed with my legs crossed and I rolled off the bed, a good 2 feet!! Have a fun trip

[Laura]

Counts today WBC 4.0, HGB 12.9, PLT 94, ANC 1740!!

Things here are great! I am starting work Monday. I am a little nervous because my doctor isn't too thrilled about me returning but it was return or lose my job. I hope it goes well. The reason why he isn't too thrilled is because I work with sick patients. He is worried about me picking something up. I will just have to be really careful.

So they have decided that I have mild asthma that I received from my bone marrow donor. Ever since I started a steroid inhaler I have not coughed once. I have been coughing since the beginning of November.

My trip to Disneyland was AMAZING! I had the best time ever!

They drew another chimerism today but that won't be back for a bit!

[Laura]

My chimerism is now down to 60 percent donor and 40 percent my own. I am worried what this might mean. My doctor still wants to "watch and wait" since my counts are okay. I am worried if we wait I might lose my donor cells all together. Thoughts?

Laura

[Laura]

I met with my doctor and he is not worried about the 60/40 chimerism. This just seems odd to me? Or maybe I am overreacting??? He also said there is not point in checking the chimerism anymore. What? I mean my doctor is a brilliant man but maybe he doesn't have experience with split chimerism in aplastic anemia. All he tells me is it is extremly rare and mainly happens in kids. He said there is no reason to do anything either. I would just like some guidance in this.

Laura