Kidney with Bone Marrow Transplant

[Ninanna]

I am officially in count recovery!  I went from 270 white blood cells yesterday to 850 today. I am still super exhausted, but the dr. keeps telling me I'm doing and looking good.

[cassandra]

Time for that bit of positive news! Now eat, and drink as well as you can. Maybe that makes you feel less exhausted?

Keep   


Lots of love, Cas

[Ninanna]

Well it's  been a really rough couple of weeks, filled with hospital stays, a kidney biopsy, countless MRI/CT and various other tests.

However things seem to be going well now that I am no longer on tacrolimus. The kidney is healthy and my first chimerism draw came back >99% donor.

[jeannea]

Good to hear you're doing well and they figured out your problem. The chimerism sounds great! Hopefully your ordeals are over.

[cassandra]

Good news !

     

[cariad]

Durable chimerism is the key! Time will tell, but you're off to a  superb start!

[noahvale]

^

[Ninanna]

We'll, I officially got GVHD of the skin.  It's not too bad, just a rash all over that's a little itchy. Honestly I've had poison ivy that's been itchier. They said it was classified somewhere between a grade one and a grade two, depending on the % of skin the rash actually covered. All the doctors saw it as sort of a positive thing as they said it indicates long term graft survival, however it annoys the shit out of me as the treatment sucks. Which is high dose steroids. I'm on 140 mg of prednisone and after one day people can't hardly stand to be around me. I've yelled, ived thrown things, slammed doors, and when I'm not doing that I'm crying. And then I'm sooooo exhausted I can't sleep. They said after a week they would start the taper, but I'm not sure people are goimg to live that long around here. Also I weigh abou 145 lbs, so 140 mg really is a lot.

[jeannea]

Wow. The most I've ever been on was 120 mg. i weighed about the same. Good luck. Watch the munchies.

[cassandra]

Oh girl, I'm so sorry for the 140 Pred (my 'record' was also 120 orally, and 1000 on drip) ,and the people around you will still be around by the time you are back

to normal       Just pretend nothing happened, as you remember nothing.
I remember calling a council-member to take me out of the hospital , cos they were trying to kill me.

Stay strong, and cool, love, Cas

[Ninanna]

Yesterday they started the taper and moved me down to 100 mg. I still can't sleep, and we are going on day 5 now. They gave me some ambien, but so far it hasn't helped any

[cariad]

Oh, hun, I'm so sorry for the GVHD and all that it's put you through with that evil, evil concoction prednisone. 140 mg is insane!!!! Thankfully it doesn't sound like you'll be on it much longer. The people around you will just have to deal, this is all about you and your health right now. Ask for Ativan or Xanax for sleep, far more powerful than Ambien. I cannot take Ativan because I would sleep for days!

If you don't mind my asking, will this bout of GVHD affect how they move forward with your post-transplant treatment and the clinical trial? Will you still be coming off all immunosuppressants in time? (that was the goal of the trial, yes?)

Hang in there.... 

[Ninanna]

The bone marrow people were not concerned about the GVHD at all, in fact they were slightly happy, especially because it was so mild and contained only to the skin. For their cancer patients they said it's usually indicative of long term graft survival/chimerism. So I guess that probably makes my new kidney the happiest organ in my the body. They said the graft usually settles down and accepts the rest of the body, so as long as there are no flare ups I should be able to start the immuno taper in August.

At this point I personally feel the immuno drugs are there solely for the bone marrow and are doing nothing to the kidney. I also think the GVHD was able to get a hold only because they had to switch me from tacrolimus to sirolimus and I probably didn't have enough level built up yet.

[Ninanna]

Today is day 60 post transplant, so I thought I would give an update.  It might be long, so apologies in advance.

I am still being seen in the in patient/out patient clinic almost daily.  The last couple of weeks they have started to give me days "off", and this weekend is the first time I have had 2 days in a row off.  This week they also sent me to discharge class, although I'm not sure how soon that will happen as I still have one issue that really needs to be taken care of first.  I also still have my Hickman catheter.  I sorta dread having to go back to needle sticks lol.

About week into my high dose steroid treatment for the mild skin GVHD I had, my CMV activated.  They routinely check for the virus twice a week, so it has been kept in check and has not caused any problems.  However the medication (Valcyte) that I am on for it suppresses cell counts.  So it's been frustrating to say the least to have had really good cell count recovery, only to watch them steadily drop week after week.  I was off of blood products for while, but now I need them again.  I got 2 units yesterday, so hopefully I should be good for at least week.  My platelets were doing really good, but now I'm back down to 48k as of yesterday.  I'm so excited to have a dry, bloody, cold nose again (not).  The white cells were holding out, but those finally tanked this week too.  The stupid CMV just won't go away!

As far as the prednisone goes, I am down to 25 mg.  Monday I drop to 10 mg, and that's where I will stay until they are ready to try the drug with drawl part of this protocol.  I'm still not sleeping as much as I used too, but I don't feel like such an emotional wreck which is good.

My vision has also severely changed, and it's frustrating because at this point I feel it is permanent damage and it is not going to ever be what it was before.  After transplant, I was put on Tacro, like pretty much every other transplant patient is.  Turns out that drug and I don't get along as it gave me PRES.  It also caused a high amount of pressure in my head.  The weird part was I really had no symptoms beside the visual disturbances.  No headache, no confusion.  The papilloedema is gone...it's been gone, but there hasn't been any changes in my vision.  It's not that things are blurry, it's more a dimming.  Light just looks different.  There is also alot of holes.  It's like an older TV/Computer with a lower resolution.  It makes it hard for me to enjoy movies/games because I know I can't see all the pretty graphics.  I guess on the bright side the Wilmer Eye Institute said I was legal to drive.  And I feel I can get around fine.  But it's frustrating knowing what I'm missing out on, and part of me worries for when I go back to work too.  Part of my job requires visual acuity to see a little tiny spec in a vial.  Which was hard to see before all this lol.  I don't blame the trial for this.  It was a complication from Tacro which I would have been on anyways if I would have my original surgery.  So it probably would have happened anyways, but who knows. 

On a more positive side, my 2-month chimerism came back >99%.  The bone marrow people are extremely confident that I have engrafted for life.  Especially because I had the mild GVHD.  My antibody level is also zero, which is great too!  I'm still amazed to think to that if someone drew my blood and ran a DNA test it would perfectly match my mom.  I told her I was going to go on a crime spree and leave blood behind to frame her lol. 

Speaking of my mom, I'm still amazed at what she did and how quickly she recovered.  She was probably the first person to ever have a combined nephrectomy, the repositioned on the table and had a bone marrow harvest.  (It's my understanding the other trials involved getting the stem cells from the donor's blood weeks in advance of the surgery.  She was out of the hospital in 3 days, and by the end of the week was even shopping.  Don't get me wrong, she was exhausted, and had lower energy levels for 4-6 weeks, but I've never seen anyone recover so nicely.

The team at Hopkins has been nothing but outstanding, right down to the nurses and techs.  I must admit I can't really comment much on how their kidney floor/clinic operates as I haven't really spent much time there.  I was on the kidney floor maybe 3 days after the surgery and I was pretty out of it.  My kidney team has been absolutely amazing though.  The rest of my time has been spent at the Sydney-Kimmel Comprehensive Cancer Center.  They've been wonderful and the center is really great.  Even though they are a part of the hospital, they are mostly self-contained, in that they can pretty much do all the testing that needs to be done, and everything is close, so I don't have to go walking all over the hospital.  And they are fast.  All of which is important when you feel like crap and have no counts. 

Also, here is a link to the trial, I don't think I ever posted it.

http://clinicaltrials.gov/ct2/show/NCT02029638?term=NCT02029638&rank=1

[jeannea]

Wow. For the easy part, you can buy saline spray at the drugstore and use it frequently in your nose. It may help and you can use it as often as you want.

This may not sound right but you're lucky they found your PRES. Mine was not diagnosed until I was in a coma on life support. Did you have any seizures? I did not have any permanent vision changes but between PRES and a really bad case of CMV I lost my first transplant. I also lost a lot of my memory and concentration abilities. Are you totally off Prograf now? If your vision affects your ability to do your job you can get disability if needed. I'm sorry this happened to you. That CMV can be a real devil too. It will calm down in a few months hopefully.

All this crap at once can be really tough. Hang in there. I hope you have something fun to do with your time too.

[talker]

I am officially in count recovery!  I went from 270 white blood cells yesterday to 850 today. I am still super exhausted, but the dr. keeps telling me I'm doing and looking good.

Hello Ninanna,

Have read all the posts in this thread, and I see I need to do more research in order to fully understand it all.

So will just settle it with saying :

Best of recovery to you, and if you have no objections , will slip in my prayers.    

talker

[Ninanna]

Wow. For the easy part, you can buy saline spray at the drugstore and use it frequently in your nose. It may help and you can use it as often as you want.

This may not sound right but you're lucky they found your PRES. Mine was not diagnosed until I was in a coma on life support. Did you have any seizures? I did not have any permanent vision changes but between PRES and a really bad case of CMV I lost my first transplant. I also lost a lot of my memory and concentration abilities. Are you totally off Prograf now? If your vision affects your ability to do your job you can get disability if needed. I'm sorry this happened to you. That CMV can be a real devil too. It will calm down in a few months hopefully.

All this crap at once can be really tough. Hang in there. I hope you have something fun to do with your time too.

Thanks Jeannea

I feel very lucky they found the PRES fairly fast, and really it's probably because of the trial that they did. They keep a very very close eye on me.  As soon as they found the PRES they took me completely off the tacro/prograf. I am on sirolimis(rapamune) now instead.  The CMV it's self I don't really think has done any damage because the tests they do twice a week for it are pretty sensitive, so the. virus levels are low. However they are only being kept low with this medication that suppresses cell count. It sucks, but at the same time I am grateful for it. It's a love/hate relationship. It's also the most outrageous expensive drug I've taken. My insurence paid $7811 (copay was $25) for a 30 day supply. I believe its a lukemia drug that was adapted to kill CMV.

I believe the twice a week checks for the CMV and the medication I am on for it are standard of care for Hopkins bone marrow transplant program.

[Ninanna]

Also, obligatory bald pic. Losing my hair has actually been one of the easier things  I could actually care less about it. I have bigger fish to fry.

My big accomplishment for the weekend was taking a shower two days in a row for the first time since this all started. Baby steps lol.

[jeannea]

You look pretty good! I would have thought you'd be more emaciated. A shower two days in a row is good. You'll get stronger soon. Sounds like you have good docs.

[SooMK]

Had to go back and read this whole thread again. It's one thing reading it as it unfolds but put it all together and I find it amazing. You are such a trooper. Wishing you well and hope all the toughest stuff is behind you!

[cassandra]

You realy look well, I hope you are sleeping a lot better now.

Love, Cas

[Sugarlump]

CMV is a bitch
I caught it from my transplant donor
and it finished the kidney off very quickly.
A difficult balance between lowering the tacro to allow my body to fight it but
then encouraging rejection...

Stay strong and keep fighting 

[Ninanna]

Thanks so much for all the support and words of encouragement guys, I really appreciate it!

Kidney function is doing well, it hasn't moved at all through all this. One of the requirements of the trial is that both donor and recipient both be CMV+.

[Sugarlump]

I was negative and donor was positive and of course no-one gave me this information prior to transplant.
When I arrived, I had to don a gown and go straight to theatre!
I would have liked to have been able to discuss the significance of this first with transplant team.

[jeannea]

Sugarlump, that is something they usually discuss during the process of getting on the list. Your people dropped the ball. Unfortunately, statistics are not on our side. If I remember right, approx 80% of the population is positive for CMV. So it is very likely that any donor will be positive. I was negative and my mom was positive. I have struggled with CMV colitis ever since. Others don't really have symptoms.