Update on Tony and "The Little Kidney That Could"

[smcd23]

Sorry for such a late update today! Tuesday is my standing appt at the salon to get my nails done. Tonight I got to enjoy my bi-weekly "me" time with a two year old in my lap and my beagle at my feet (yes, they let me bring the dog inside so he wouldn't sit in the car and bark the whole time). I was also 15 minutes late to my appt because I had to pick everyone up, and I couldn't even have her paint me tonight because I would have ruined them as soon as I tried to put everyone in the car. Just got done painting them myself, and it looks like a 5 year old did it. *sigh*  I just keep telling myself this will get easier, it will get better...

I didn't even think about what all the meds might be doing to his mental status. Oops I feel bad for thinking he was being a wussbag. But I know this must be very hard for him not being near our son or in the comfort of his home. As crazy as things are for me, I at least get our son every night and to sleep in my own bed.

Anyway, Tony had hemo last night and they took off another 1.8 liters. Then around noon they took him down to get a cath in his chest wall instead of his neck so he will be more comfortable during hemo treatments.

Then he called me as I was heading out of work. The transplant head came down to see him. They got the results back from Boston. Tony's body is obviously fighting the kidney. They did find an antibody in the sample from Saturday that was not in the original 48 hour crossmatch. I know Tony got a unit of blood during the transplant, so I wonder if the antibody came from that (I should write that down and call and ask in the morning). They still believe the kidney is viable. Their plan of action is to treat this like any other cross match positive donor/recipient paring - plasmapheresis and immunosupressants (currently thymoglobulin, cellcept and solu-medrol). Only difference is the kidney is already IN Tony. But the Doctor said the kidney is 10x smarter than us - as soon as it started being attacked it shut itself down to protect itself, and the Doctor is confident that as long as it has adequate blood flow, it will be fine.

He said they are going to stay this current course for 1 week. There is another, stronger immunosupressant for situations like this, eculizumab, which they may decide to use instead. But it makes you more susceptible to meningitis, so they don't want to use it unless there is no progress with the current plan. He did say that the meningitis risk would be slightly lower because he'd also be on antibiotics which is part of their post tx protocol. He said he believes the plasmapheresis will work, it just may take a little longer than it would if they used the other drug.

So when Tony called to tell me all of this, he sounded pretty happy. I think he was just relieved to hear *something* new. They are also undecided on whether the clotting and reduced blood flow is part of all of this. They are still thinking and leaning toward it being heparin induced thrombocytopenia or something to do with arterial cuts, as he has 3 clotted fistulas and he clotted my kidney within hours.

So I am just trying to stay positive, focus on their optimism and not think about all the stress at home - organizing daycare, finding weekend babysitter, trying to figure out when I could possibly go up to visit since I don't have a babysitter etc. As much as he makes me crazy when he's here, I do sort of miss having company that can speak in full, coherent sentences and doesn't hog the entire bed.  And I am going to keep praying for a quick and successful outcome to all of this. I hope to escape with my sanity!

[jbeany]

 

Men are wimps when they are sick though!   

Having a plan of action, even if you don't know if it will work, is sooooo much better than not knowing anything!  Hope this works for him.

[MaryJoe]

And the roller coaster ride continues!  At least they seem to have a plan, and an alternative med if this one doesn't do the trick.  Maybe things will smooth out a little on the medical front.  Now you just need to figure out the messy, stressful details of home an work!(sigh... )  I honestly don't know how you keep from screaming.  You're doing an amazing job of keeping everything together.  I know your son must miss having Daddy home and it's good that he has been able to be with you to reassure him that while everything may be confusing right now they  are going to be okay. Hang in there, I know you're tired, worried and stressed, but it will get better. I'll keep sending positive thoughts and prayers your way.

[lainiepop]

thinking of you all & praying the treatment works to Stop the rejection. Hope you get some sleep too x

[smcd23]

They are giving him another transfusion today. His hemoglobin was 5.2. I wonder how all these transfusions may effect his antibodies... I am going to call up there in a few and ask I think. He said they told him the low hemaglobin is caused in part by the anti rejection med and also by HD. He still says he's wicked puffy but the nurses told me with te chest tube it will be easier for the fluid to be pulled off. I guess they can pull more blood through the chest port than they could through the neck cath.

[Cordelia]

Oh my goodness. I'm so sorry to hear all of this!! I will keep Tony and you and your beautiful little family in my thoughts and prayers!                       

[Poppylicious]

Thinking of you both Shauna.  *huggles*

(And men ARE wimps, bless them! ... But I actually think he's being very unwimpish right now, and so are you, and I really hope that in a few months you'll be ale to look back on these first few weeks and have an insane chuckle occasionally.)

[smcd23]

On my way to the hospital. Nurse called at 4. Ultrasound is showing no blood flow. Taking him to surgery for removal. Praying that the ultrasound is wrong. Praying for a miracle because if it clotted it's hemo or death.... No possible transplant ever again. I'm completely devastated but I'm not going to cry. Just praying. Im still an hour away. Wish I could fly. Wish I could fix this. He's devestated I know he didnt even want to talk to me. I understand he feels like this is the end.

Thank you all for your support and prayers. Heaven knows I need that now more than ever. I'll keep you all posted.

[cariad]

Oh, Shauna! I'm devastated for you. Hoping right along with you that the doctors have another trick up their sleeves, but if not, it will be hemo. Tony needs to hang in there until science can offer him another option. Many are working on it, he just needs to stay strong until the next big thing arrives. Hugs and more hugs.

[jbeany]

 

[amanda100wilson]

Oh, I am so incredibly sorry to hear this.  I have been following your news closely and was hoping that it would work out for your husband.

[jeannea]

I'm so sorry. That is really bad news. Allow yourself to cry if you need to. I'm sure it's very overwhelming.

[smcd23]

I'm in the waiting room waiting to see the doctor. I'm usually calm in these situations but 3 times in less than 2 weeks? My nerves are shot! I can't take much more!!! He's been done supposedly for 45 minutes and they checked to see if I was here. I may need to go t the bar after this!! I got a long drive home still too, and a little boy who is  freaked out because daddy hasnt been there for bedtime for 2 weeks and now mommy is gone too

[smcd23]

No more kidney. I'll need to talk about this when I get home and I'll elaborate. His body just doesn't want him to live.

[Jelena]

I am so sorry! My heart goes out to you all. 

[MooseMom]

Oh, God...I am so sorry.   I just don't know what more to say that can heal your heart.

[lainiepop]

So So Sorry to hear this. thinking of you all xxx

[KarenInWA]

Shauna, I am so sorry to hear all of this. I wish we could all be there for you to give you hugs and support.
 


KarenInWA

[MooseMom]

No more kidney. I'll need to talk about this when I get home and I'll elaborate. His body just doesn't want him to live.

Keep us updated only when you feel like it.  Like Karen said, I wish we could be closer so that we could be of more support.

[jbeany]

 

Wish there was more we could do.   

[MaryJoe]

Oh Shauna, I'm heartbroken for you both.  Praying for peace of mind and comfort for you.   

[Poppylicious]

Shauna sweet ... I'm so sorry, for both of you.  How completely crushing and heartbreaking. I'm sorry I can't offer more than *huggles* but I am thinking of you all. 

[cariad]

So sorry.  Can you possibly take FMLA leave in order to give yourself some time with your family and allow yourself to start healing from this trauma?

[WishIKnew]

My heart is breaking for you.  Thank you for keeping us updated, but don't let us add to your burden.  Like the others I wish I could be there to physically help.  My only advice, breathe, just breathe and try to only think about the next immediate thing, not beyond.  Praying for you!

[smcd23]

It was a HLA antibody rejection. Despite the thymoglobulin and other meds, the plasmapheresis they couldn't stop them or get them all out in time to save it. The antibody was in response to the organ. They reviewed his labs from early June and he didn't have them then. I asked if they could have come from the unit of blood he got in the original surgery but they said it was unlikely because he was already on immunosuppressant meds at that time. I really don't know what he's going to do. I'm sure I'll survive either way. I don't think anyone has died from crushed hope and broken dreams yet.