Kidney with Bone Marrow Transplant

[jeannea]

It's easy for them to say the side effects aren't bad! Good luck with the next steps.

[cassandra]

We're thinking of you

   

Lots of love, Cas

[noahvale]

*

[Ninanna]

Yesterday started out so great, but quickly turned into a nightmare. The chemo went quick and smooth, and compared to the ATG I thought it was a walk in the park. I was walking around the unit, talking to people, making friends. Then I came back to my room and this monster headache from no where started building and building. They gave me some Tylenol but that did nothing and it only kept getting worse. They didn't want to give me anything else as I was in the middle of dialysis.

Since the headache started before dialysis, they didn't think it was the cause of it, and they needed to keep cleaning my blood to get the chemo out. Longest 2.5 hours of my life. At one point the headache was so bad I was vomiting. Once dialysis was over they gave me something that was supposed to calm me down and get rid of nausea and hopefully let me sleep. After that I don't remember much, the night was just an awful blur of pain and feeling like my brain was on fire. At some point they gave me blood. My headache is still here, though not as bad. Every 4 hours they are giving me Tylenol.

My second round of chemo is hanging right now. Let's hope tonight was better than last.

[jeannea]

Sounds awful. I hope today is better.

[noahvale]

^

[cassandra]

Good luck, and strength my darling

     

[Ninanna]

Last night was a little better, but this process is definitely draining. The chemo is kicking in and there is lots of vomiting and diarrhea. The only thing that really super bothers me though is the headache. Did dialysis for 4 hours last night, and let me tell you, diarrhea every 15 minutes doesn't work we'll with the machine. They had to bring over a portable toilet for me... I felt bad for the tech lol

Anyways, from here it's pretty much one day at a time as best I can.  Here is to day -4! 

[cassandra]

OMG it's ticking girl   

I hope today goes better

   


Love, Cas

[jeannea]

Day -4 ? Getting closer to the finish line. You can get through the awful part!   

[noahvale]

^

[cariad]

Girl, you are almost there. If I am calculating correctly, tomorrow is Day Zero! Sadly, it seems you are having a somewhat similar experience to me right now. I had two different types of chemo, the first one I tolerated quite well, the second flattened me. It did not help that the arrogant little neph in dialysis tried to take off fluid during treatment when I had none to take off, so I had to demand to get saline put back. I had TBI the last day and remember very little else, by the time I was wheeled into theatre I wanted nothing more than to be knocked out. (If they put a mask on you in the operating room and say 'This is just oxygen' they are lying! Grab that mask and breathe deep, for it will soon be over!)

One other thing that I want to warn you about: everyone else on the transplant floor has not been through this, so try not to compare yourself to recipients who are doing cartwheels and grands jetés past you in the corridor. The most calming words I ever heard on this subject were when a clinical trial nurse coordinator told me that one of their earliest participants in that trial had said that it took him about 2 months to feel like he hadn't actually made a horrible mistake. I'd say that timeframe was bang on accurate for me, with me feeling fully recovered at around the 3-4 month mark.

Oh, and the hair loss - people will never treat you so well again. I never explained - too complicated - it was easier to just take people up on the little favours they offered me each day. 

Good luck and fast recovery. We are pulling for you.

[cassandra]

   


                         

[Ninanna]

I'm still here. Transplant went well. My mom is doing well and her little kidney is a rock star. Very exhausted, just wanted to check in

[lainiepop]

  XXXXX

[jeannea]

Yay!! Congratulations! I hope you heal quickly and feel great. Good to hear about mom too. 

[cassandra]

Fantastic news!!!!

Speedy recovery wishes to both of you


     

[Ninanna]

True to your words Cariad, after the second day of chemo and dialysis I was ready to be at the transplant day already so they could put me out of my misery. The morning of the TBI I was actually feeling ok, and thought maybe I could get some food and a shower, but then TBI happened. I threw up more with TBI than with anything else combined. In fact chemo didnt make me throw up, it was mainly dialysis.

In recovery I don't remember much other than I was constantly clicking the pain button until they figured some other drug out. I don't remember the marrow infusion, other than they said I tolerated so well it took only half the time they were anticipating.

Up until the surgery I was inpatient on their bone marrow transplant unit. After the surgery I went to the kidney unit for 2 days, and now I am back (thankfully) on the bone marrow unit.

Other than this pain in my side I can't tell I got a new kidney. It's working and everything, but that is all overshadowed by everything else that is out of wack at the moment. The first couple of days after the surgery was filled with the embarsent of me shitting myself and the bed from all the chemo. Plus the first time I stood up my platlets were so low and I had no underwear on and this giant blood clot from my vagina just plopped on the floor.

Yesterday was my last post-transplant chemo, so what that means is things are slowly going to start to get better, hopefully without too many hiccups!

Today I start the anti-rejection meds prednisone, cellcept and tacrolimus. After 6 months they will start the taper.

[cariad]

Aw, Ninanna, I'm so sorry you've experienced some of the harsher side effects but it appears that you've made it through the worst. I don't remember if I had chemo after the transplant, I must have had one dose as I definitely had that 24-hour IV of some drug that prevents bladder infections I think it was. It's to counteract the chemo. Gah, I'm getting flashbacks now! Props to you, darling, this is not an easy procedure to get through. You are already doing better than I did if you can type messages and sound so optimistic so soon after the operation.

There is so much to monitor in these early days, I'm sure they've told you everything you need to report to them. They say that if you make it through the first 100 days, you are unlikely to come down with GVHD which is one of the overriding concerns with this procedure. I counted the days. The chemo destroyed my veins, but then I had decades of blood draws before that transplant that didn't help. They want so much blood in a clinical trial like this one, so drink lots especially before blood draws (it helps apparently) and learn which are your best veins. I've learnt all sorts of special requests I can make when it comes to blood draws to preserve my veins as long as possible. I hope you won't have the issues with that that I've had, but I'm more than happy to pass on any information in that (or any other) regard should you need it.

Keep the updates coming, it's exciting to hear that you've made it this far! 

[Ninanna]

Today is kind of a frustrating day. I don't feel particular worse or anything, but I don't really feel better, and the realization that things aren't going to get better for probably at least another week, or until my bone marrow starts producing cells again is kind of a frustrating prospect. I knew going in it would be like this, but it's still frustrating to be at this juncture. At least I can feel notable improvements in healing at the surgical site which is nice. Hopefully they will remove my JP drains soon. That would nice to not lug around anymore.

[jeannea]

I'm sure it's frustrating but I'm glad to hear you have some improvement. Keep getting stronger!

[Ninanna]

So after 18 days in the hospital I finally get to go home!  I still have to report to their inpatient center everyday for all of the blood products and various other thing I need associated with a bone marrow transplant. But then I get to go back to my own home at night as long as nothing is wrong!  I am so sick of being connected to this IV pole 24/7 that it will be nice to be free!

We did have a scare where they thought they were going to have to biopsy my new kidney because of a high amount of protein, but luckily my bone marrow team talked them out of it as I had a lot of blood in my urine from the chemo. Everyday the creatine/protein ratio continues to drop so they no longer need a biopsy.

The last two days all of my hair fell out, except a little is left, so first thing when I get home is to cut/shave the rest of it off. The funny thing is I find I could care less about it. I would much rather have my cell counts recovered.

[jeannea]

Home!! Sleeping in your own bed! Congrats! 

[Ninanna]

I am so exhausted. The thought of getting up to do anything is just too much at times. Every day at clinic it seems there is some new issue that they have to run a bunch of tests for to rule out things that could become a very serious issue. Still waiting around for my counts to come up, hopefully soon so I get off some of these meds and start to get some energy.

[lainiepop]

Thnking of you, glad u are home xxx