written on October 13, 2014
Sorry it’s been a week since I posted anything. Last week, as you can probably imagine, was not an easy one.
Last Monday started out so well – my excitement level was reaching a peak intensity. The reality of having to get up at 3 am on Tuesday morning was tempered by the hope in the new kidney. All of our relatives were coming to help take care of us, both my wife and I had been getting emails and texts of encouragement all day. At dialysis, all the nurses and techs were coming over and congratulating me. They even gave me balloons to wish me well – as the social worker put it, “we don’t get too many success stories here.” So I was leaving my dialysis center as a success story.
Then the phone call came from my wife’s surgeon; at 3 pm, with a little over an hour left in my dialysis session. My parents and my sister had already gotten on their respective planes, my wife’s parents had arrived the day before. The surgeon calls and it’s over. He said he was reviewing my wife’s CT scan from June, the one they do for final approval that lets them know the condition of her kidneys and determine which one would be the best to remove and give to me. In his review, he noticed a small calcification in her right kidney (the one she’s keeping) and he immediately ordered a 24-hour urine test from her to make sure she is not prone to kidney stone formation. The surgeon told my wife that if she is naturally prone to kidney stones (even though she has never had one before) and if she has one in the future with just one kidney, she could go into renal failure herself. It’s a good decision on his part, to make sure she’s a “safe” candidate as a living donor. The problem is, I'm pretty sure he was supposed to have reviewed this CT scan the week before, when we went for our PreOp meetings. Maybe he had been too busy so he put it off until the afternoon before the surgery, thinking since the radiologist passed her in June it would be okay. But the radiologist either didn’t notice the calcification in June, or decided it was no big deal, and he passed her for living donation.
Unfortunately this turned the entire week on its head. I went from being so excited and happy to being extremely upset and very pissed off.
To top it all off, my cough, which started from the IVIG treatment, has gotten progressively worse. Yesterday I felt like I was coming down with something. And on top of all of this, my blood pressure has gotten high again. I’ve been living with my blood pressure around 170/100 since last Monday now. Is it a side effect of the IVIG, or something else? And why have my medications decided to stop working after being so effective for an entire month?
Another cause for concern, because if I can’t get the blood pressure back under control, it won’t matter if Cedars reschedules the surgery - they won’t go through with it. And they also won’t go through with it if this cough turns out to be some kind of infection. Neither one of us can be sick before the surgery happens.
We still haven’t received the results from my wife’s urinalysis, so we’re still in the dark as to whether or not Cedars will even reschedule the surgery. We’re still hopeful that they will and that the drug therapy I’ve already gone through will still be good. But what if my blood pressure doesn’t come down? What if I’m sick with some kind of lung infection?
I feel like we missed the best window of opportunity for the surgery last week. I can say I lost a lot of respect for the surgeon, the radiologist and Cedars in general. How could this have happened the day before the surgery? I understand the cause for concern, but this is something that should have been noticed/caught at least a week earlier.
Oh, and one more topper to the entire situation. On Tuesday, my wife’s social worker and her nurse called her to tell her how sorry they were and they apologized to her that this happened.
But no one called me.
She called her social worker on Wednesday to tell them that someone should call me because I was very upset that no one had thought to call me directly. So my social worker and the nurse coordinator called me later that day to apologize, both of them saying that they figured my wife would have just told me they were sorry.
Clearly this means the recipient is not the most important person in the transplant procedure at Cedars. Again, something that makes me lose some faith in their policies and procedures. I don’t want to be singled out for anything, but the truth is without me my wife would most likely not be a living donor candidate, surgery would never have been scheduled and none of this would be happening. I understand the need and desire to take care of living donors – it takes a lot of courage and strength and willingness to donate a kidney to another human being. But without a recipient, the donation would never happen. Maybe the staff at Cedars needs to remember that I’m more than just a number on a piece of paper – I’m a person too, with feelings and emotions and a dedicated interest to make sure this surgery happens without any complications.
Hopefully we’ll get some good news in the next couple of days. And hopefully I’ll feel like writing a more positive blog entry soon.
Thanks for reading – I still had some issues I needed to get out. I think I’m on the other side finally.
Now if I could just get on the other side of the surgery…