Post Transplant Regimen - It does get better, RIGHT!?!?

[MooseMom]

Thank you so much for the update.  I haven't been able to get you and Tony out of my mind all day, so please forgive me if I'm asking too many questions.  I don't mean to be intrusive, particularly at this very chaotic and difficult time, and the last thing I want is for you to feel obligated to answer my silly questions.

I agree with you...if Tony has an undiagnosed genetic condition, you really need to know for your son's sake.

I'm still hoping that the docs will be able to come up with something. 

[smcd23]

He's put out almost a liter of urine since they put the cath in, but most of that was when they did the cath.

I'm camping out in his room till they kick me out, wonder what time that will be...

[okarol]

I am so sorry about all you've been through. It's just so hard to believe the problems! Do they know if scar tissue has forned where they sewed on the artery?
Poor guy. Poor you. I wish there was a solution to this. They don't let you stay with him? I insisted on sleeping in my daughter's room (she was 21 at the time.)
I am thinking about you, wishing there was more we could do. 

[willowtreewren]

 

[cariad]

Just checking on you and Tony and grasping onto the small ray of hope that I see in your updates, hoping that the doctors decide it is too early to give up on this kidney. As for the zero native kidney function, that is quite common for people on dialysis. Makes matters a little more challenging, but does not mean he would have to spend all of his time hooked to the machine. They really need to get to the bottom of this clotting issue so that they can properly advise you what is and is not feasible for him. I so want to believe that there is a way forward for him.

I sit in awe of the strength that I am reading in your posts. Hun, I think any doctor with a drop of sense would think twice about trying to kick you out of that room. Is there anything you particularly need right now? Perhaps we could problem-solve with you if there's an issue you've been trying to handle on your own? I'm wittering on because I am just so sad that you are going through this, and just want to be able to carry some of your burden for you. 

[smcd23]

They just came in, apparently the kidney is coming out. I just wish they'd make up their darn mind! First it's out right away then it's try to save it for 3 days now it's out first thing in the morning. Which still leaves him no way to do dialysis. Oh and he has not told his family.

I wish my mom was here. 

[lainiepop]

I am So so sorry to hear your news. Thinking of you all

 

[MaryJoe]

I am stunned by these developments, my heart literally hurts for the three of you.  Please know that you are in my thoughts and that I am praying for the doctors to come up with an alternative treatment.  I hate that you are there alone.  I wish your mom could be with you too.  I wish someone could be there with you to hug you and let you know that you are not alone.  I wish I could comfort you in a more concrete fashion than words on a screen.  I know things are so very dark right now, please don't loose hope.

[noahvale]

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[smcd23]

Depending on the outcome of today I may call back to our old facility. It's a larger hospital they may have more resources. Now that we are married and he's on my insurance they can't put him on status 7 hold. I will move across the country if I have to and he wants to in order to find someone who can fix this. I just wish it wasn't him, I wish it was me instead. He's never gotten a chance to travel or enjoy being young. He's honestly never been able to do much, he's always had this hanging over his head. He actually had hope and dreams last weekend and it just amazes me how quickly they were crushed.

He's in surgery now, we will see what happens.

[willowtreewren]

I'm utterly speechless with grief for all of you.

Keep fighting to find a solution.

 

Aleta

[jbeany]

 

Thinking of all 3 of you.

[smcd23]

He still has the kidney. He's been on high dose of steroids. They went in and it was still pink which means it still had blood flow. They did a biopsy. They think it could be a reaction to the heparin so he's off that and on a different thinner. They have no real answers. The surgeon says he's "cautiously optimistic" I told him how the previous hospital went through my kidney with a fine tooth comb after it clotted and could not get an answer either. I haven't seen him yet, they are doing x-rays and stuff before I can see hi

[jbeany]

Pink is a good color!  Keeping my fingers crossed for you.

[willowtreewren]

I will continue to hold my breath in hopes that the medical profession can find a solution for Tony.

I'm glad that he still has the kidney.

 

Aleta

[smcd23]

He's not making a lot of urine yet though and what is coming out is very dark. I am having our friend Bill drive me home so I can get a shower and a nap. Then I'll head back up. They have my number I'm sure they will call if there is a big change but so far it looks like its hurry up and wait.

[KarenInWA]

I am sending my prayers and positive thoughts your way so that this kidney finds a way to be strong and healthy for Tony. I have been keeping track of this thread for a while now, and I was devastated when I read that the kidney had to come out. Hoping and praying that this will not be the case. You all deserve health, energy and prosperity for many years to come!

Thank you for the updates. You are a very strong woman, and I am glad you are there for Tony. He is very blessed to have you by his side.

KarenInWA

[lainiepop]

Hoping  &  praying he can keep the kidney 

Lots of Love xx

[okarol]

 

[smcd23]

They are transfusing him plasma. They are going to give him hemo tomorrow to pull fluid off. They are treating this as an episode of acute rejection and a reaction to the heparin/lovanox. They also said the kidney could be in shock now, like it just realized that it's now in the right body. They won't be writing it off until Wednesday and I guess they won't be worried until then. They said he will be up here for at least a week.

[cariad]

OK, this hospital has 4 days to show you what they can do. I sure hope they deliver. This on again/off again is making me bonkers on your behalf, Shauna. Try to remember to take care of yourself through all of this. It is just so hard. We are standing by your side through every moment.

[noahvale]

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[smcd23]

Noah I am do happy to hear that given your clotting issues also. He's on thyroglobulin and cellcept for antirejection and he had solunedrol this morning. They are also testing for heparin induced thrombocytopenia but those tests are not back yet.

This has been such a roller coaster. Up and down its in it's out it's dead it's alive. I'm so freaking exhausted. A family friend got me a hotel across the street from the hospital which I am so thankful for tonight. I'm not leaving here for awhile, I am willing the kidney to start peeing. Hasn't worked yet but I am determined! This kidney better be ready for me! It has no idea what I am capable of haha!

[MooseMom]

I'm relieved to hear that the docs are not giving up just yet.  Tony should be given every opportunity to get this kidney working.

It was so thoughtful of your family friend to get you a hotel room.  The travelling back and forth is in and of itself exhausting.

Good luck to you and Tony.  We are all praying for him.

[smcd23]

I just got to the hotel - Tony was sleeping and stable. Still no pee though.  Hoping the urine will be flowing in the morning.

Realized when I got to the hotel I didn't bring pajamas. Good thing I'm sleeping alone! And I just want to say I never realized how much bigger a king bed is, I think we need one at home! Tony, the dog, the baby and myself could sleep so comfortably in a bed like this!

I'll be going back to the hospital in the morning, the nurse said shed call if anything came up. I'll post an update in the morning. I thank you all so much for your support and kind words, it means so much. I can't put my gratitude into words, but it means a lot and can't wait to tell Tony when he's feeling better!