Kidney with Bone Marrow Transplant

[Ninanna]

Thanks so much everyone. All of your support has really helped me through this!

 

[Ninanna]

Today I have kind of a good/bad update. First the bad:

I have been in the hospital for the last week. I came in with a fever and some tightness in my chest that was causing a cough. After a CT of the chest they determined I had an incursion in my lung and started treating me with antibiotics and anti-fungals. They also wanted to stick a tube down there to get a sample. That ended up not happening as the pulmonary people were concerned about sedating me when they saw fluid around my heart. So I had an echo of my heart done and it was determined that the fluid was enough to constrict my heart and effect it's function. Next step was placing a tube in my pericardium. Worst. Procedure. Ever. I screamed (loudly), cussed, and even started hyperventilating. None of the drugs they gave me during the procedure helped at all.  They ended up draining about 550 ml. At least they hooked me up with a pain pump afterwards.

The good news is, since I'm having all these infection problems, they have bumped up my anti-rejection tapering schedule. Like way up. I was supposed to finish in February of next year, but now it's looking like October of this year. I have a kidney biopsy scheduled for Wednesday of next week, and as soon as that's clear, I will stop the rapamune. I am already done with the MMF, so then all I will have left is the prednisone, of which I am down to 5mg of.

Ironically with all this crap going on, I hit a personal best with my creatinine today lol

[cassandra]

OMG what an awful thing to happen to you. I'm so sorry you had to go through that. But like you say, your creat, and the speedy tapering are some positive 'consequences'

I hope you're not in pain anymore now, and that you get to go home soon.

Get well my darling, sending healing vibes, and lots of love, Cas

         
                         

[jeannea]

Holy crap! Ouch ouch ouch. I hope that they can get you better fast.

[PrimeTimer]

I imagined something like that scene from the movie Pulp Fiction when John Travolta had to stab a large needle into the heart of that girl to save her...or at least a very very painful experience. Hope you never have to go thru anything like that again and are breathing much easier now. Once you are over this hurdle, sounds like another occassion for Thai Arroy..

[SooMK]

Wow! Just when it seems the worst is past there's something else to endure. There must have been a box for optimist when you were picked for this. You seem always to be able to see the upside. Wishing you a clear path ahead!

[Ninanna]

Cass, Jeannea, PrimeTimer, SooMK, you guys are the best. Your support and well wishes really mean a lot.

I think this whole fluid around the heart and infections are much more serious than how I was taking it. I mean they had to write a major deviation to their protocol that they spent a lot of time on, because they feel it's in my best interest. Also today, one of the doctors asked me today if this recent experience made me feel different about the trial...like if I had any regrets. To me it was a strange question, because I felt mostly fine before I went to the hospital, and I feel fine now. But I guess he wouldn't have asked that if it wasn't serious. Of course my answer was no.

Since I'm off the cellcept and my rapamune dose is almost zero at this point, my cell counts have done a complete 180 in 36 hours. Quite incredible really. My kidney biopsy is this Wednesday, hopefully they get the secondary reading faster than they did last time so I can stop it all together. At least some good can come of this for future patients.  I may have shown that if you have full chimerism and no signs of GVHD, it might actually be riskier to stay on these drugs for a whole year. This could potentially shorten the process, so that it's done in 6 months instead of a year.

Ironically I have been telling them since April, "You know, September 26th is my 30th birthday, it would be nice if you guys could have me off the drugs by them."  I've said it so much they are probably sick of it. But now, it looks as if they are going to meet that deadline!   

[jeannea]

That's the same birthday as my niece/goddaughter. She started college this year at George Washington. I miss her. She texts me occasionally.

Regret is such a crazy question. How do you know what will happen in your life? You could have been healthier or a lot sicker or who knows. You made a decision and gave yourself hope. Regret is for when you do really stupid things that you should have known better about. And your experiences will help others. They'll know more for the next patient.

[Deanne]

You've had an incredible roller coaster ride through all of this. I bet will be awesome to be "normal" again. In the meantime, you probably qualify for an honorary medical degree.

[PrimeTimer]

Along with your box of optimism and your honorary medical degree, bet your employer is thrilled to have you. Any employer would be lucky to have you. I'd be sure to point that out next time you want to toot your own horn and ask for a raise or promotion.

[PrimeTimer]

Cass, Jeannea, PrimeTimer, SooMK, you guys are the best. Your support and well wishes really mean a lot.

I think this whole fluid around the heart and infections are much more serious than how I was taking it. I mean they had to write a major deviation to their protocol that they spent a lot of time on, because they feel it's in my best interest. Also today, one of the doctors asked me today if this recent experience made me feel different about the trial...like if I had any regrets. To me it was a strange question, because I felt mostly fine before I went to the hospital, and I feel fine now. But I guess he wouldn't have asked that if it wasn't serious. Of course my answer was no.

Since I'm off the cellcept and my rapamune dose is almost zero at this point, my cell counts have done a complete 180 in 36 hours. Quite incredible really. My kidney biopsy is this Wednesday, hopefully they get the secondary reading faster than they did last time so I can stop it all together. At least some good can come of this for future patients.  I may have shown that if you have full chimerism and no signs of GVHD, it might actually be riskier to stay on these drugs for a whole year. This could potentially shorten the process, so that it's done in 6 months instead of a year.

Ironically I have been telling them since April, "You know, September 26th is my 30th birthday, it would be nice if you guys could have me off the drugs by them."  I've said it so much they are probably sick of it. But now, it looks as if they are going to meet that deadline!   

  Happy (belated) Birthday! Hope you are continuing to do well!

[cassandra]

Ooh lala, a belated

     


How are you doing?

       

[robinj2]

Congrats on the new kidney.  I received a new one on June 10th of this year and came back to work exactly 3 months to the day.  That was with no complication other than leg swelling.  I work in a large office and 2 weeks in, I had a bad cold.  I got my flu shot early and will be wearing a mask all winter and I just might keep my gloves on in the office.  You have to be careful and you don't want to be sick all winter and put extra strain on your new organ.  Listen to your doctor. 

[Maggie and Jeff]

Looking for the post saying your total off the meds.

[inga]

Any updates?

[UkrainianTracksuit]

Hi inga,

I hate to be the bearer of bad news but Ninanna passed away shortly after her last post.  I really didn't want to say anything here out of respect for her familiy's privacy (who may not know about an account here) but I learned through social media.  I'm really sorry.

[lainiepop]

Oh my goodness i am shocked and saddened by ninanna's passing. I cant believe it. When i saw thus thread pop up i was interested to see how she is doing. Her poor family.

[DialysisGoneFOREVER]

Wow! I'm shocked! Condolences to her family.

I see she had her kidney/bone marrow transplant at Hopkins. Anyone know if the programs at Northwestern or Stanford are doing any better?