Day by Day

A mama blogs the journey to transplant and beyond...

Monday, January 19, 2009

Not Going Down That Road


Sorry to have just left this blog hanging after I was posting so much. We arrived back in Reno on Wednesday afternoon and left Thursday night to come down to Las Vegas to visit Chris's family.
Tuesday before being discharged we made a plan with Dr. Alexander to stay overnight and do labs again in the morning. Joaquin's Prograf level was very high and he was on a very low dose of Prograf. The doctors were thinking that the steroids he was given may have artificially raised his levels, since that can happen. The lab that we go to in Reno is not able to do the Prograf levels for us and they fly it down to Las Vegas. So the turn around time is longer than at Stanford where they can receive same day results. On Wednesday his level was back in his "range" but they kept the dosage the same and so we had to do another test on Thursday morning. We won't know about the results until tomorrow.
So basically what we know and what Chris and I have been able to understand is that when looking at the preliminary results on Saturday from the biopsy on Friday the pathologist saw inflammation in the kidney which would lead them to think rejection and/or infection. Since he also tested positive for donor specific antibodies (DSA) they thought it would be one of two types of rejection: 1) cellular, or 2) humoral. Chris and I are thinking they thought it was humoral since that's the type that corresponds to a kidney transplant patient having the DSA's present. Dr. Grimm was still optimistic about it but I could tell that he wasn't totally optimistic just by his voice and face.
I really thought that it was humoral, unfortunately, since there were the DSA's present and they said he was having a case of rejection. We had to complete three days of steroids and 14 days of antibiotics. Monday he finished his last dose of the steroids and Dr. Alexander wanted us to stay in the hospital until we heard back on what type of rejection it was since if it was humoral rejection we would have had to do an IVIg. I guess you're supposed to wait a day between the steroids and the IVIg. So we would have started that on Wednesday and it would have taken 10 hours to complete the full treatment via IV, of course.
So in the late morning Dr. Alexander came into the room. Looking back on that I don't know if it was as he walked into the room or later after he had left that I noticed he was in a good mood. At the time it didn't really affect me because we were coming to peace with this whole rejection business. We start talking to Dr. Alexander and he said that there was no humoral rejection and gave us a big smile and thumbs up. I looked over at Chris and he looked at me. We were catching a break! He went on to say that upon closer look and more testing they were thinking that it wasn't rejection at all but infection. He also had a positive urine culture. Now, if y'all remember, back at the end of October Joaquin was sick and also had a urinary tract infection. Since then he had tested negative, but apparently Dr. Alexander did not know about that. The certain type of bug he had tested positive for is a tricky guy that is hard to get rid of. I remember Dr. Alexander said, "That's it!" when we put all the puzzle pieces together. In a sense it's both a good thing to have so many doctors and a bad thing since all the information about one patient sometimes does not get to all the doctors. But that's what we parents are for, right? We keep all the information straight.
Dr. Alexander was saying that there was no need to keep Joaquin in the hospital anymore. We are planning to go down to Stanford in another month for some more tests, specifically one to see if he's refluxing into the his kidney. Joaquin's always had "plumbing" issues - it was the whole reason for his kidney failure in the first place. Dr. Alexander said that no surgeon would ever admit that his plumbing didn't work but that it sometimes happened that way. The refluxing could be the reason that he's having so many UTI's. And since Joaquin did test positive for DSA's, there's a chance that we will most likely go down and do an IVIg. The reflux test and the IVIg can all be done in the same visit when we go down again.
This all just felt like a miracle to me. I didn't think once the words "rejection" were spoken they could ever be taken back. I thought we were going down that path, that we'd have a rejection under our belt. I just never thought that we could go back to not being in rejection. I was worried that even if he did have little to no scarring that once his body started trying to reject my kidney it would be a bumpy road. I couldn't believe that Joaquin's kidney was rebelling. Turns out it wasn't.
We are flying back to Reno tomorrow morning early and I imagine I'll have a lot of unpacking and resettling to do so I'm not sure when I will be able to update again. I plan on putting up some pictures of our time. The one I posted is from the night we were released from the hospital and we're all in our hotel room. Good times. Joaquin was so excited to be out of the hospital. We were too.
Thank you again for all your thoughts and prayers and for helping us get through this.

3 Comments:

Blogger Lea Bee said...

thinking of you and joaquin and yay for the good news.

6:14 PM  
Anonymous Anonymous said...

I had IVIg before my transplant almost 3 years ago. They did the IVIg at Cedars-Sinai in Los Angeles. I'd love to know what they told you at Stanford about IVIg. Did you meet Dolly Tyan? She is the other person, other than Dr. Jordan (Cedars-Sinai) who patented IVIg for use in Kidney transplant. I'd love to talk to you :)
Soraya

9:34 PM  
Blogger Unknown said...

♥♥♥

4:21 PM  

Post a Comment

<< Home

patio furniture store
patio furniture store