Day 110

[Laura]

Things here are going good. My day 100 BMB showed my cellularity had dropped to only 5 percent (from 30 at my previous one post transplant). My counts had also plummeted down for awhile. So needless to say we were worried that we would have to do a stem cell boast as my bone marrow showed 95 percent donor and my blood showed 100 percent donor. Thank goodness my counts are starting to rebound (although my last set was a little lower)...so we are cautiously optimistic that things will improve. They are weaning me off the Prograf in order to see if that was suppressing my marrow from producing cells too. I get my labs again tomorrow and pray they are higher or at the very least the same! I also meet with my dr so we will see what he says. The biggest things for me is they can't keep my Magnesium up. I get 4 grams iv every day and it is always low every day regardless. The doctor states as I get off the Prograf it will get better but have yet to see that. I also have burning in my feet that was being controlled by Lyrica but for some reason it has come back so now I am using a topical cream in addition to the Lyrica. I still take the Budesonide for gut GVHD but have no symptoms of it. Also I have Bursitis in my shoulder that is painful but because my platelets are so low (from the drop) they can't really do anything about it except pain medications. The doctor says as soon as the platelets come up I will get a steroid injection. I really honestly can't complain and just can't believe that I had a transplant a little over 100 days ago.

[Ruth Cuadra]

Hi, Laura.

Sounds like you're pretty much on track. I had the same magnesium and burning feet problems until my Prograf was substantially reduced. I can even remember my feet burning most while standing in a lukewarm shower! Expect those symptoms to go away and your counts to go up as the dosage goes down.

Regards,
Ruth

[Laura]

Hi Ruth,

Thanks for the post.

Yeah the weird thing is my feet burning is worse now that we are decreasing the Prograf? My main dose was 2 mg in the am and 1.5 mg in the pm (if I remember correctly...geeze I can't even think of it right now). Right now I am at 1 mg in the am and 1 mg in the pm. You would think it would be getting better along with the Magnesium but no such luck yet.

But honestly, I really can't complain as things could be worse than burning feet and Mag problems!

Laura

[squirrellypoo]

I'm not familiar with prograf, but when I was on cyclosporin it made my hands and feet burn and be REALLY sensitive but that went away almost immediately when the cyclo was stopped. I feel for you with the magnesium drips - I hate that stuff! It always makes me SO hot!

[tserdogan]

Hi Laura,

I am happy about your 110 day counts.I am at day 85 and my counts change everyweek.Last week my plt was 115,today is 88.I understand that this changings are part of these days.I don't know when will our counts stabil at safe zone.

[Laura]

I am still waiting for those counts to recover. They did come up for a few lab draws but now they seem to be dropping again. I try to tell myself look at the trend not the day to day lab work.

I have been battling this headache for almost two weeks. The intensity changes day to day. Anyone have any thoughts as to what this could be from? We are at a loss.

Laura

[tserdogan]

Hi Laura,

How is it going?Any news?

[launch]

Laura,

I know this is way in left field, but, I was wondering if you're being treated with Acyclovir or something to prevent Shingles? The reason I'm asking is, although my friend did not have MDS, she had shingles in her head, and it still causes intense headaches... she had some rash on her face & head, but, when the rash went away, she still has a headache frequently.

I just wanted to ask if that had been considered at all, especially with low immunity during the transplant and the possibility of shingles.

I will keep you in my prayers.
Cindy

[Laura]

Tserdogan (sorry I don't know what your real name is),
I just got back from the doctor today. My labs have plateaued. WBC mid 2 range, Plts 70s, HGB has been dropping (dropped 1 point in a week), ANC 1000-1300.

The doctor said they see patients where their counts plateau like this and he is satisfied with where my counts are now. I am just frustrated because right after transplant my counts were basically normal and now I am back to worrying about "low" counts again.

Tonight is my last dose of Prograf and he is hoping once I get off the Prograf my counts will increase. Today is day +131.

I also have major issues with low Potassium and Magnesium. I receive 4 grams iv daily of Magnesium and 100 meq of Potassium daily. He hopes that this will get better too once I am off the Prograf.

I was started on a BP medication and since then my headaches are pretty much nonexistent. They are blaming my high BP on the headaches.

Cindy, thanks for the information!! I will tuck that away for future reference.

Laura

[Laura]

Cindy,
I forgot to mention that yes, I am taking Acyclovir twice a day to prevent Shingles, etc.
Laura

[tserdogan]

Hi Laura,

Yesterday i went my doctor.My counts are decrease for 20 days.my counts are like yours except my hemoglobin.i still transfuse red blood.My doctor said to me if your donor cell is ok(last donor cell score %99),no need to frustrate.He also said to me, may be viral infections and medications role decrease your counts and two years need to get your counts to be normal.
Patience is our medical:)

Serkan,

[squirrellypoo]

Hi laura. I had BP related headaches, too, for a while and they were absolutely excruciating so I really feel for you. They attributed my raised BP directly to the cyclosporin, and lo, as soon as I came off the cyclo a month or so ago my BP. Returned to normal and I didn't need the BP medication anymore.

(2 weeks later and I've still got those hives though,argh! I'm hoping the skin biopsy result comes back today so they can start treating them!)

[Laura]

Day +134 counts!!! (Yesterday)

WBC 3.2
HGB 12.1
PLT 91
ANC 1150

I am so happy to see them increase finally!!!
I just can't wait for the day for when my counts are nice and high like they were right after transplant!

Laura

[tserdogan]

Hi Laura,

I am very happy about your counts.Go Laura.:)

[Laura]

I know I shouldn't complain, but I can't help but worry about my labs. I don't understand why they aren't increasing faster and I don't get why my ANC is starting to consistently drop again (990 today). I worry it is going to keep dropping or that this will be my new normal. I guess 990 is better than 200 where I was before transplant. It is just disappointing because I had such wonderful counts right after transplant. Where did they go?

Laura

[tserdogan]

Laura,

Are there any decreasing about red blood and plt?May be viral infection or medicals?What is your doctor saying?

[JEZ]

You have been so helpful to me in your posts. I am by nature a do it now type of person and this journey with AA requires so much patience. Even when I try not to think about those labs, the concern about what they will be lurks just below the surface. I think your big picture looks great and you are in my thoughts .... peace and relief from worry are what I wish for you!

[Laura]

The last three labs my platelets have been 91, 88, 89, so they are staying about the same. But they are up from the 50s of where they used to be during the last time my counts all dropped off. (At that time my ANC dropped to where I needed to get Neupogen.) My HGB is 11.4 from 12.1 but this has been pretty steady in the 11 range. The doctors say they see this sometimes after transplant and they don't seem worried or concerned at this point. I guess I will just have to see what the trend is.

Thanks Jez!

Laura

[tserdogan]

My opinion the doctors want to find optimal medical ratios.İf the labs change they decrease or raise some medicals for me.İt is like matematics.So patience is needed at least one year for us labs stability.

[Laura]

Bummer news today...I have dropped to 70 percent donor cells down from 100 percent. That probably explains the labs. I see my main doctor on Monday and can't wait to have a discussion with him on this. But I talked to another BMT staff today about it and she told me different thoughts on what could happen. Request more cells from the donor, wait and see, etc. So I have to wait to see what my main doctor says. I just had scope with biopsies and it still shows gut GVHD and waiting for CMV to come back.

Laura

[JEZ]

Bummer news today...I have dropped to 70 percent donor cells down from 100 percent. That probably explains the labs. I see my main doctor on Monday and can't wait to have a discussion with him on this. But I talked to another BMT staff today about it and she told me different thoughts on what could happen. Request more cells from the donor, wait and see, etc. So I have to wait to see what my main doctor says. I just had scope with biopsies and it still shows gut GVHD and waiting for CMV to come back.

Laura Stay strong and don't give up... our mantra ... It is so hard to face the ups and downs... I know another "up" is just around the corner for you! Keep us posted re: your doctors' take on it all..

JEZ

[squirrellypoo]

Oh I'm sorry to hear that laura! What a drag after you'd been doing so well. But try not to let it get to you, after all, you might just need that boost from the donor to get everything moving again.

Hang in there, and try to remember all the good things you're thankful for today. Counting up the good stuff always helps me to focus on the positive even when things seem bleak. I wish I could give you a big hug!

[Laura]

Sorry to leave everyone hanging. I don't have any news yet. My counts are the same (PLTs in the 70s, ANC bounces but latest was around 1100, HGB 10 range) so the doctor is encouraged they aren't dropping. He is testing my CD3 and CD33 chimerism. If the CD3 (T cells) is low, he might ask the donor for more cells. Hopefully will get the results back this week! The waiting is crazy.

Laura

[squirrellypoo]

Fingers crossed it's good news, Laura!

I merely found out today that it might take upwards of two weeks for my lung biopsy results to come back, as fungus takes forever to grow in the lab... :/

[Laura]

The waiting is the worse!!!!

I just found out I have zero donor T cells and 100 my own T-cells...will wait and see what the dr says later today...bummer.

Laura

[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]

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 (http://www.marrow.org/JOIN/Med_Guidelines_Join/index.html#Asthma):
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

[squirrellypoo]

Hi Laura.

Yeah that seems kinda worrying to me, too... I hope someone else can shed some light on this for you.

melissa

[Laura]

Yesterday I woke up sick and with a fever. They found I have an infection in my lungs. Caught it early thank God. Although, I can't help but worry especially after Vera. I pray that it doesn't become serious.

Laura

[squirrellypoo]

Oh geez how scary! You were right to run to the doctors, they've drummed it into my thick head now to go in at the slightest temperature.

Fingers crossed the meds will take care of this asap. I'll be thinking of you!

[Laura]

Thanks Melissa! I'll keep you updated.

Laura

[tserdogan]

Hi Laura.

May you recover soon.Is your blood counts affected negatively about this fever and infectios.Did you check it

[Laura]

They were checked but I didn't get the results. Thanks!

[Laura]

My counts have been holding great. Just those darn platelets that won't budge from the 90,000 range, oh well. I have another spot in my right lung and they aren't quite sure what is going on. But I feel so much better so they are thinking maybe it is residual inflammation?? I am itching to go back to work. Once I had the taste of work, it is crazy to be off once again and sitting around. I have been off two weeks now. I hope to return Thursday or so?

Laura

[evansmom]

Hi Laura,

Glad to read you are feeling much better. Are your asthma type symptoms improved as well? I am sure the docs are keeping an eye on the spot in your right lung through repeat chest xrays etc. but is there a point when they may do a bronch and get a closer look?

[Laura]

Hi Nicole,

I actually don't have a repeat xray for two weeks (at my next appointment) because the doctor feels since I feel fine and am no longer having fevers it must be fine. I guess I am not too crazy with that response at all and I actually had to request the repeat xray at my follow up. I do see the pulmonologist tomorrow in regards to the possible asthma flareup or whatever it was that was going on. The ER had put me on five days of 50 mg of Prednisone to help with it. I was worried because of the spots in the lungs but my transplant doctor was fine with this. I made them check with him first. So I am not really sure what is going on? At least I feel well, right? But then again my doctor seems to think that I was okay in the first place (in regards to the asthma stuff) and it was just esophageal spams I was having. I also don't agree with this as why would my chest feel tight and I had coughing fits and couldn't breath? And by using the albuterol 30-40 times a day helped. Honestly, it has been a back and forth thing the past week and I am just really frustrated with things right now. I felt like my concerns weren't being addressed and were being brushed off so I just went to the ER and that is who suggested an asthma flare up. The symptoms I was feeling have been completely gone since I have been on the Prednisone too. I guess I will just see what the pulmonologist says tomorrow. Anyhow, so I am not sure if the infection, lung spots are related to the possible asthma flare-up or they are two completely different things?

Laura

[Laura]

Nicole,

I should probably clarify things a little bit...

I originally had woken up sick with a fever, etc. They ran all their tests they normally do for fever and found a nodule on the 4th rib and some opacity. So I was put on an antibiotic. Still felt sick for days after. Headaches, nausea, general feeling of not feeling well, fever. Then I started having those chest tightness, coughing spells, shortness of breath. At first it was once to twice a day. Then I had a follow up appointment and xray. It showed the nodule was still there but I had another one inbetween the 6-7 rib too. I told the doctor about the symptoms I was having but I felt like it was brushed off. I felt daily it was progressively getting worse and worse. I also felt like drinking cold things or going outside and even taking the Flovent really triggered an episode. I kept calling and I felt like they were brushing things off. Seriously, it was the worst feeling I have felt through my entire transplant. I was sick of them brushing it off so one morning when I woke up and had one of those spells I said forget it and just went to the ER. That is who thought maybe it was an asthma flare up or what not that was triggered from the illness or allergies that I was feeling. And plus the fact that if I took tons of albuterol the feeling went away. So they put me on the Prednisone and I have not had issues with those spells since. So we will see what the pulmonologist says tomorrow. I don't feel like I could fully express what was happening on my page since I feel like I am downing Mayo and since I work there too...I even feel bad expressing my frustrations about what has happened on here but I guess I am just stating the facts too.

Laura

[evansmom]

Hi Laura,

Geez, how frustrating. I can appreciate your position in terms of being critical with your treatment centre/employer however, you are stating the facts, you are not naming names and you are entitled to seek emotional support from your friends here and vent your frustrations.

I cannot lie, I am a bit concerned about your pulmonary issues and the fact that you responded so quickly and favourably to the high dose pred.

Your immune system is still very young and you are still somewhat suppressed on the gut GVH med ?budoneside. The two things I would be on alert for are:

1. Fungus in the lung
2. Bronchiolitis Obliterans (relatively rare post BMT complication of a gvh nature, Mark Yates had this) which can become even more symptomatic +/- serious if a pneumonia develops over this, which is then called bronchiolitis obliterans organizing pneumonia (BOOP).

Each condition has a very specific treatment.

I sure as hell don't mean to alarm you but knowledge is power. No one on your medical team is losing any sleep over your situation, you know what I mean?

At the end of the day, you are not seeking a gratifying friendship with these folks. It doesn't matter if they think you're annoying or a pain in their ass. They would be no less concerned than you are if this was them or their loved one. If something doesn't make sense or your gut tells you they are on the wrong track, say so. Push hard for what you need, you ARE worth it!

I don't buy this sudden asthma diagnosis either.

Take care and please keep us posted.

[Laura]

Nicole,

It is very interesting what you wrote because it was pretty much exactly how the pulmonologist felt too. I know I have been a pain in the ass to the nurses the past week but you are right, I need to push for things that I don't feel is right and I am not there to be their friend.

Anyhow, so I meet with the pulmonologist and he was AMAZING!! I loved him; he was great. He expressed great concern over the symptoms I have been having and basically flat out stated "it is not in your head". DUH, that is exactly what I have been saying to my main doctor but no one was listening to me. He ran a chest CT and another set of pulmonary function tests. Every pulmonary function test I have had has come back lower (and again today, lower). This concerns him greatly. The chest CT also showed the nodules and infiltrates in the right lung, which was also concerning. According to the CT report it could be an infection but the doctors don't seem to feel this is the case because I am "well". He basically stated he thinks I could have bronchiolitis olbliterans. He said it is hard to officially diagnosis this but states that it very well could be this and I need to be followed very closely. I am going to have follow up chest CT and PFT in a month and go from there, unless of course things become worse. He also increased my Flovent to 4 puffs twice a day. He is also going to have me take azithromycin M/W/F. I guess research has shown that this keeps the lungs healthy and happy. Interesting, huh? I have to admit that I am nervous about all of this especially since I do know what happened to Mark and the fact that I feel like my BMT dr is brushing this off. I wish I had an official stamp of a diagnosis too but I will take what I can get. It is not that I want to take Prednisone but I worry that the treatment they are doing isn't enough?? I need to do some research on this. He told me that any damage that is done is not reversible, so why wait for the damage to be done? Then again, what if it is an infection and they are not treating that? However, I do honestly feel good, but do I just feel good because of the Prednisone? Yesterday was my last day taking that. So he didn't officially make a diagnosis but stated it could be B.O. and just needs to be followed carefully incase that is what it is. AHH frustrating. Anyhow, I am going to go back to work tomorrow because I feel good and I don't feel like there is a reason not to go unless you have different thoughts???
I greatly appreciate any advice/ideas/etc you have
Laura

[evansmom]

Laura,

Great, great news on the pulmonologists' attitude and approach. Azithromycin and prednisone (I guess Flovent instead?) are the appropriate therapy, bang on.

If it is BO, it's critical that they get a jump on it now. It's also real important for you to become very well versed on this condition. Know it inside and out. If it ends up not being BO, then hey, no harm done. But if it is, YOU can be the expert and help determine the course of action. Very empowering.

I know a 16 year old boy who, 2 years ago, developed BO post BMT for relapsed leukemia after a life threatening and prolonged bout with severe GVH (grade 4 skin and eyes, grade 3 gut). The BO emerged 2 years after he became stable with the GVH. His lung function was really low, like 25%. He had to be hospitalized for a few weeks at the peak of this condition for azith and solucortef IV but I want you to know he is GREAT today. In grade 10 and getting good grades, loving life. And this is a boy who was supposed to die in the ICU several times over.

Go back to work, it's keeping you busy and fulfilled. It's important to keep active, eat really well and drink lots of water. Nuture your immune system by doing all that you can to keep it healthy, including plenty of rest. Just be aware of the dangers in your department and take appropriate measures to protect yourself from the kiddies that are potentially contagious. Remember, kids are cesspools at the best of times!

Your health comes first. I believe your instincts will tell you if/when it's time to back off from working and focus on your health.

You are a tough and smart girl, you'll be alright.

[Laura]

Nicole,
Yes, I will definitely have to take the time to research and get to know what is going on with this. It will be interesting to see what my BMT dr feels about this possible diagnosis since he seems to think they are "esophageal spasms" or at least the last I talked to him that is what he thought. At least the pulmonologist seems to think there is something to what I am saying. Thanks again for all your advice, I always feel better after hearing what you have to say.

Laura

[evansmom]

http://erj.ersjournals.com/cgi/reprint/25/3/490.pdf

[Laura]

Thanks!

[squirrellypoo]

Hi Laura.

Oh that sounds like such a good result with the pulmonologist! Funny that he says Azithromycin is to keep your lungs happy - I wonder if that's why my team have said I'll be on it for life? I'm relieved to hear that they're not suggesting you get a lung biopsy - I don't want to scare you, but mine was HARDCORE. General anaesthetic, two solid weeks of being totally reliant on super strong painkillers, and it resulted in 3 rather large scars and the permanent loss of sensation in my right breast (apparently they hit a nerve while in there, thanks guys!). And they went in to diagnose what they thought was a fungal infection only to get no result whatsoever. So don't be bullied into having one just on the off-chance it might reveal something - if they do it, make sure it's for a really really good reason.

I'm off to reply to your PM now...

[Laura]

Melissa, Thanks for the info. On a side note. I always wondered what the RIC stands for in your signature? Thanks :) See pM

Laura

[squirrellypoo]

Ahh it's Reduced Intensity Conditioning, aka a mini-transplant. :)

[Jen B]

Laura,
Almost a year after transplant and still having to worry about this.
Makes me wonder at which year after BMT we get to shelve the worrying and continue on with normalcy.
Please keep us posted!

[Laura]

I had my appointment today. All my labs are about the same (normal except PTLS at 93). I don't go back until my 1 yr post transplant follow up. It is unbelievable to me that I had the transplant one year ago. I just can't get over that. I am feeling great and doing good. Just still having issues with Potassium. I had to go up to 140 meq daily today (14 pills daily). I meet with the lung doctor in a few weeks to recheck everything too.
Laura

[squirrellypoo]

14 pills a day?? omg! I'm only taking... (counts) 6 each day. Though 3 of those are Aciclovir so it's only 4 different ones.

Yeah the time has just flown by. I was saying to the life coach yesterday (my last session, waaaah!) that the time up to Day 100 just crawled by, and then as soon as you hit that, the time just flies...

Wedding planning is going very well! I'm in the middle of sewing the two bridesmaids dresses right now but I hope to finish those by the end of May. I've got to organise a tasting session with the caterers and finish the wedding website so we can finally send out the invites, but it's all good. I'm such a chilled-out opposite of a bridezilla it's very funny. I think after a BMT you just can't get too caught up on little things going wrong in life any more. (Though, to be fair, we were both pretty low-key about the wedding before I got sick, too!)

[Laura]

Ha! Well I take more than 14 pills a day. For just the Potassium that is 14 pills. Then 3 pills of Budesonide, 2 of Acyclovir, 2 of Lyrica, 2 of Protonix, 1 of Azyithromycin, 1 of multivitamin. So that equals 25 pills a day. Yeah, needless to say I am sick of the Potassium pills.

So happy to hear the wedding plans are moving along. I bet it is exciting to finally be able to move on to normal things and get back to your life.

What tests are you doing for your 1 yr follow up? Just curious. Also, after a year post transplant what precautions are they still going to have you take?

I am just finishing working a night shift (11p-730a) so I can't wait to go home and crawl in bed!
Laura

[squirrellypoo]

Oh I don't know the details of my one year tests yet - remember I'm a month behind you so my anniversary is in the first week of July. All I know is that I have to get a BMB *grumble grumble* at least it's the last one!! I'm definitely scheduling that for AFTER my race, as I always feel pain in my hip with every step after one, and a 10k would be excruciating right after a BMB...

I think I'm getting a few immunisations and they're going to evaluate whether to keep me on the Aciclovir past then, but other than that, I don't really know.

I'm just planning on celebrating with some rebirthday cake and my race. :)

[Laura]

Yeah, I am throwing a mini party at my place to celebrate my one year. I have to work the weekend of my one year :( so I am throwing it the weekend before. I also am having a BMB/BMA but under sedation, bone density, pulmonary function tests (early), chest xray (early), have to have a dentist check my teeth (in July), different labs. I thought I was supposed to get shots too but no mention of that?? So I am not sure??

I might have to be scoped in the next week or so to check for GVHD in my esophagus, stomach, and to see if it is worse in my gut. I have been having some issues. The diarrhea has returned since Friday. For awhile now my stomach and esophagus have been bugging me with possible heartburn like symptoms and just plain upset. I already take 40 mg of Protonix twice a day so we are going to also add Pepcid 20 mg twice a day to see if that helps. If not, it's a scope. UGHH just when I am starting back to work.

Laura

[squirrellypoo]

I just had a look through my big post-BMT info packet and it says to have inactivated viruses at one year IF you're not on immunosuppressants and there's no sign of GVHD. So I'm guessing the latter is the reason they're not gearing up to jab you yet.

Since I have it here in front of me, here are the inactivated (1 year) and live vaccines (2 years):

Inactivated:
pneumonia
influenza (if Sept-Dec)
Hib (haemophilus influenza??)
Neisseria meningitides (is that meningitis?)
Diptheria
Tetnus
Polio
Hepatitis B if required

Live vaccines:
Measles, Mumps, & Rubella (MMR)
Chickenpox (though this isn't standard, I'm going to fight and pay privately if need be to get it!)

[Julianna]

Congrats on your one year post transplant Ladies!

Thanks so much for being so informative. I feel like I'm listening in on someone elses conversation :) ...but I guess you wouldn't post it up if you wanted it private. Thanks heaps. I've learnt a lot.

Jules

P.S. Hope you're getting better every day Laura... you seem to be struggling a bit.

[Laura]

So I ended up getting scoped yesterday because my esophagus was hurting so bad. They took biopsies for CMV and GVHD so we will wait and see what it shows.

Laura

[squirrellypoo]

:( Big hugs, Laura. I had an endoscopy earlier in the year and it was decidedly NOT FUN. I hope you can snuggle up in bed and watch crap tv for the rest of the day today rather than have to go in to work...

[Laura]

Yes, I took today off. Deciding to work the rest of the week or not. I am still having pain, waiting for the results.

Laura

[Laura]

Below is a copy and paste from my caringbridge as it pretty much sums it all up :)

Day +342

I can't believe that this time a year ago I was preparing for transplant and now here I am almost a year later. I just am in awe and disbelief that it was a year ago. I will be having a party at my house June 12th to celebrate my one year post transplant anniversary.

I met with the pulmonologist today. Prior to the appointment I had pulmonary function tests. My lung function has improved since starting the treatment for the possible B.O., which he also calls GHVD in the lungs. So I will continue with the treatment for a few years minimum. The doctor says that the hope is after a few years my body can co-exist with my cells and therefore we won't have to worry about my lungs at that time. I will have followup pulmonary function tests a minimum of every four months. If I get bronchitis or any other illness related to the lung I need to let him know right away as this could trigger a response that could cause an increase in GHVD in the lungs (because once the bronchioles get irritated it causes room for the GVHD to occur) and a significant drop in lung function, which is the main concern.

Work is going great! We are so insanely busy. It is very crazy at work but I am loving every minute of it! It is so great to be back at work doing something that I love to do (pediatric nurse).

In three weeks I will have my one year testing. Then Ryan and I will be heading to Canada for a vacation. It's time to get back to normal life...thanks to a generous donor whom I will forever be grateful and the almighty Lord.

[Marlene]

Congratulation Laura! Have a great celebration!

Marlene

[squirrellypoo]

That's great news about your lung function, Laura! It sounds like they should be able to keep it under control without too much interruption to your daily life, so that's very good!

[tserdogan]

I am very happy for you Laura.I am from Turkiye and you know USA is far away from Turkiye.I can not come your celebrate:)Conratulations....

[Laura]

Thanks everyone.


Serkan, I have been thinking about you. How are you doing? Are your counts any better? What is the game plan?

Also thinking about Vera who should be celebrating with us at this time too...

Laura
P.S. I just realized you can upload pictures. Here is one from this past weekend. I went to a friend's cabin and it was a blast. My hair is growing like crazy too and I actually like it short...debating to keep it short :)

[tserdogan]

Dear Laura,

My last counts are great for me.First time my all 3 counts increase slowly.
Hgb:93 Nearly 40 days last transfusion.
Plt:82
Wbc:2,4

Thanks God for this counts...

[Laura]

Serkan,

That is WONDERFUL!!!!!! I am so very, very happy for you. I am so happy to hear it.
Laura

[squirrellypoo]

Laura, you look great!! Heehee, we have the same haircut, too. :)

And Serkan that's fantastic news abut your counts!

[tserdogan]

Same haircut too:)

If i can succeed,i put my before and after photos to site.I will try it this weekend.

Melissa,

USA is far away but England is closer than USA.If your wedding area is near to London and if my health is ok,maybe i and my wife want to join your wedding ceremony...

[squirrellypoo]

USA is far away but England is closer than USA.If your wedding area is near to London and if my health is ok,maybe i and my wife want to join your wedding ceremony...Hi Serkan. I'd love to meet at some point, that'd be really nice! But I don't think the wedding would be a good time - I've got a bunch of family and friends flying over for it (including 6!! people staying at ours!) plus the stress of organising everything plus sewing my gown plus organising the US reception the week after the wedding... yeah, I'm going to be so stressed out that I don't think you'd see the best side of me! Perhaps it'd be better to meet after we're back from the honeymoon and things have calmed down a bit, perhaps this fall or winter sometime?

[tserdogan]

Hi again,
Wedding time is generally stressfull time for everyone and i guess your organisation is more diffucult.We will talk it again after wedding and honeymoon.

My last cbc update is;

HGB:12.2 last transfusion is 47 days ago
PLT: 115
WBC:2.37

[Laura]

Wow great counts Serkan!!!


I was scheduled 68 hrs this week (Fri-Fri). I am beyond exhausted and don't think I will be able to finish off the week. My whole body aches and my legs hurt really bad from "overuse". Just when you think you are getting your energy level back then you backslide. I guess I don't have as much energy as I think.

Laura

[tserdogan]

Same aches and leg hurts i have too.But everyday it is decreasing.I change my shoes,i prefer comfortable and soft shoes.it works sometimes for legs.

[squirrellypoo]

My god, Laura, no wonder you're tired!! I'm literally working HALF that many hours per week (4 days at 8 hours = 32!). Don't be hard on yourself - any fully well person would be shattered after that!! Is there any way you can get your shifts reduced a bit? Surely this isn't normal, is it just covering while others are ill or on holiday or something? If you keep that up, you're going to pick up a cold from being so stressed and weak...

[Laura]

Melissa,
This was rare. Mayo's pay period is Wednesday-Tuesday so that throws things off sometimes. Then it was my weekend Fri-Sun (12 hr shifts each) and my holiday, Monday, (Memorial day, 8 hr shift) to work. So I had to work that 4 days for the one pay period. Then I had Tuesday off. Then I still had to work my time for the following pay period (Wed-Friday, 8 hr shifts). I took yesterday off. I was so exhausted and my legs and right shoulder hurt so bad. I could barely walk. I literally slept until 4 pm. I debated not working today, but I felt better so I went to work. But now I am home and sore and exhausted. So I ended up working 60 hours this past week since I took yesterday off. Now I have three days off thankfully! Work three days and have three more days off. I usually work 72 hours a pay period (per two weeks). I had to return full shifts or I couldn't return. I work 0.9 FTE. It doesn't help that we are SO short staffed and so extremely busy. We literally had one bed open when I left work today. I run my butt off every day and hardly sit down. But boy do I love it (being busy, not the tiredness). They ask me every day to stay overtime (even today) because we are so short. Oh well, I do love my job, but it is very, very tiring.

[Laura]

Almost one year post transplant and here I sit in the same place I had it..the hospital. One year to the day (yesterday), I was admitted for GI issues. I have been having issues the past three weeks. At first it came back + CDiff and I got treatment for that. But the GI problems never went away and now the CDiff is -. So now I am getting scoped tomorrow to check for CMV and GVHD. I don't feel like it is either but I could be wrong. Since I was on treatment for CDiff, couldn't it be false negative? It is just frustrating. So my bone marrow biopsy and bone density test has been delayed until they get things figured out. Frustrating... Laura

[squirrellypoo]

Oh no! What a bummer... And another scope, too. :(

I don't think I like the way they're celebrating!!

[Laura]

DAY +365 ONE YEAR POST TRANSPLANT!!!!!!!!!!!!!!!!

Wow, I can't believe this day has actually come!! It seemed like it would take forever to get here and now when I think back it seems like transplant just happened not too long ago!!

On this day, I want to celebrate my donor who graciously gave up her time to donate bone marrow cells for my second chance at life. I will forever be grateful to her. I hope she knows and realizes how special she is. At this time most people can find out who their donor is, if both parties consent. Sadly, my donor comes from a country were we have to wait five years. So four years to go.

The past year has been filled with many ups and downs, but I am forever grateful for just how well I have done. I remember those who did not fair as well...Mark Yates, Vera...etc.

I can still feel the emotions of a year ago..emotions of uncertain, of fear, of what was to come...and here I have passed all that and now I can "worry" about moving on with my life.

Thanks to everyone for their love and support.

I got discharged from the hospital last night after getting more iv potassium. I feel much better but my gut is still acting up. I have a follow up check on Monday.

I have all my one year testing rescheduled and that will happen soon. I will update results as I know them. I did find out that my blood chimerism is back up to 70 percent donor and 30 percent my own cells. (Remember we want 100 percent donor cells.) So it seems like my cells are co-existing pretty well with my donor cells. Pray this remains so for the rest of my life. As it has the potential to become an issue later on (ie. my cells take over and need another transplant).

Does anyone know of any precautions we still need to take after a year? Can I go in rivers and lakes and public water? Do I have to be so germ obsessed? Can I clean the house now? Etc, etc.

But for now I leave you as I celebrate my donor, celebrate God, and celebrate my second chance at life.

[CDChilds]

Hi Laura,

I'm very new to this site and I'm so happy to see and hear your testimony of how a BMT can change your life.

My son Gage (13 yr) has had two ATG treatments so far. One Horse and one rabbit. He's in partial remission right now but if his count continue to decline we may be looking at another round of ATG. He has no BMT donor right now and he has been considered moderate AA since he was 3 years. Gage has only had about 12 transfusions since he was diagnosed.

Does anyone know about the sucess rate with a BMT after having multi ATG treatments? I'm concerned because on some web sites they talk about his chances of engraftment becoming slimmer.

[squirrellypoo]

:D Congratulations, Laura!!! :D Happy rebirthday!!

Does anyone know of any precautions we still need to take after a year? Can I go in rivers and lakes and public water? Do I have to be so germ obsessed? Can I clean the house now? Etc, etc.I think that's decided on a case-by-case basis, so it's worth asking your doctors when you next see them. Mine finally said I can eat sushi and soft cheeses again (woohoo I'm going to eat my bodyweight in chevre in Paris next weekend!) since my counts have been firmly in the normal range for months now (with the exception of lymphocytes, of course). I'm still avoiding super crowded places like sweaty clubs and gig venues, and the tube at rush hour, but that's more my hesitation than anything the doctors have said. But it's probably still a good idea to be liberal with the hand santiser even if you haven't had a transplant - nobody likes getting sick!