Duke 2012 – Day 4

Saturday, January 7, 2012
Today’s blog will be two things: earlier and shorter than it has been so far. Earlier so you don’t have to stay up past midnight or be anxious until tomorrow to get the update (and so I can get in bed earlier). Shorter because there isn’t anything new to report.
The doctors told us again this morning what we thought we understood yesterday – that the excess fluid has been taken care of by the IV diuretics and that Tami’s heart is slightly weaker than it has been previously. They are going on the assumption that this episode of fluid retention is just a hiccup, not a dramatic change in her condition. So we are going to try the new diuretic for a couple of weeks to be sure that it keeps the fluid off. Then we will come back for a follow-up and for Tami to do the special treadmill test that she has done several times and that is used as one of the primary indicators of he need to consider heart transplant. You may recall that the last time she did this test she did so well that she was told she didn’t need to do it for a while. So, now, since they think her heart has weakened some, they want to re-check it on the treadmill.
Now we just have to stay until her anti-coagulation medicine (warfarin or Coumadin) becomes therapeutic. That is, it needs to be working to achieve the desired result, namely, that the blood does not clot like normal. This anti-coagulation treatment is used in many conditions, but, for Tami, it is used to prevent the formation of blood clots on her mechanical aortic valve. In the hospital, they manage this a different way, with the fast-acting IV drug heparin that can be stopped so that there is good clotting (i.e., not excessive bleeding) during procedures or surgeries. After the procedure, however, it takes a few days of taking the warfarin by mouth to reach the desired effect, measured by what is called INR. There is the possibility that we may get to come home before the INR reaches its desired value (at least 2.0 if you really care, and Tami’s today was 1.2) by doing a couple of days of injections at home. We are also going to ask in the morning if they can’t give her a larger dose of warfarin tomorrow to speed up the process (when she is at home and the INR falls below the normal therapeutic range, she takes an extra dose or two to bring it back up – that’s not what they are doing yet, so we are going to ask – there’s really no point in just sitting here extra days just for one pill and one blood test per day – really!).
That’s all – I’m going to bed – you can pray either that we get to come home tomorrow (I even said I’d give the shots if that would help us go home sooner! ) or that we don’t get totally stir crazy and come home Monday. Good night.

Duke 2012 – Day 3

Friday, January 6, 2012
Well, today I have been reminded how many people anxiously anticipate the daily updates on Tami. After posting a couple of Facebook updates early in the day and sending a few people text messages with various and partial updates, the afternoon got a little hectic (it’s all good, just trust me and stayed tuned and don’t skip ahead…). I didn’t get everyone re-texted or Facebook re-updated, and I got a barrage of texts of the “is there any news/is she done yet/have you heard from the doctors?” type. Yes, yes, and yes. And I’m sorry it’s late getting blogged again tonight.
So it was a long and tedious morning. We saw the intern, they drew blood, the nurse checked everything, and we waited. And no one knew or could affect the schedule of the cath lab, so we waited. And Tami hadn’t eaten since midnight, and we waited. So you can tell how fast the time went. About 11:30 the doctor came and said that Tami was the next case and would be taken in about 10 minutes.
(Now I have to tell a side story here. When we first came to Duke 6 years ago, we, of course, knew no one here. So after arriving at 11:00 p.m. on Friday, we met our first Duke cardiologist at 7:00 a.m. on Saturday. He spent the entire day on Saturday – his day doing rounds at the hospital – running tests, explaining results, confirming the diagnosis, and generally reassuring us. After that amazing first impression and seeing him on follow-up clinic visits for the past 6 years, we have developed a great respect for him, and he has always been genuinely interested in Tami (and in Alexander, too). But we have never seen him in the hospital, except for dropping in to check on us a couple of times. His specialization is not congestive heart failure and congenital heart disease, it is adult catheterizations. So when we knew that Tami would actually be having a heart cath on this visit, she wanted nothing more than to have her favorite cardiologist, the one with whom we have the best personal relationship, to be able to do it. But in a hospital this big with as many cath proceduress as they do each day, what are the chances of that? Well, however big the odds, we are reminded that our God is bigger than that. So, the doctor who came in, personally checked Tami before the procedure, brought the consent forms to sign, and did the entire procedure himself, was Tami’s favorite doctor! That definitely made Tami’s day!! )
So they took Tami and had her back within an hour. Tami said that the doctor told every person individually how important Tami was and to do their absolute best and take complete care of her! She even had the opportunity to choose the music they listened to (someone can explain to me some time – a guest blogger or something – why doctors like to listen to music during surgeries and procedures). Of course she chose Christian music, so the entire cath lab staff got to listen to a contemporary Christian radio station for an hour!
When she got back, the doctor said that Tami had done well and that there weren’t any problems. (He made a point of saying that he doesn’t actually do many procedures any more since there are fellows (that’s doctors learning a specialty) to do them for him, but he did this one himself!) He said there were what he would call “good” results and “just ok” results. On the “good” side, the pressures inside the heart were completely normal (not something we usually hear about Tami’s heart!), and that means that the excess fluid has been completely removed by the IV diuretics the past 2 days. YAAAAY!!! The “just ok” news is that several other measurements that they did confirmed what the echocardiogram showed yesterday, that the “pumping ability” of Tami’s heart is less than it was before. That is not a surprising result, and it is not a dramatic or excessive or sudden decrease in pumping efficiency.
The transplant cardiologist that we are seeing in the hospital came in a few minutes later and explained about the same thing. He said the good part about the “ok” results is that this is only the first time that Tami has been hospitalized for congestive heart failure and excessive fluid retention. If this were happening every 2 or 3 months, then the situation would clearly be much worse and we would have to be thinking about much more aggressive therapies and solutions. (Yeah, as the transplant doctor we normally see said recently, “that same conversation we had once before.”) But, for now, we can do the easier and less complicated things first to keep the symptoms under control and to maintain as much normal activity as possible. So, we are going to go home and take the new diurectic that Tami started last week (torsemide) and see if that keeps the fluid off for a few weeks. If so (and under normal circumstances it should), then good. Keep doing what works and let them know again up here when it’s not working again. While she is still feeling well and the fluid is under control, they will want Tami to do the special treadmill test that she has done before that is one of the best indicators of the heart’s output and whether a transplant is coming into the picture again. That’s Plan A. That’s at least the way we understand it right now. Plan B is for if, in a couple of weeks, the fluid retention has become a problem again. Then they will probably do more IV diuretics again and tweak the other meds some more, and we will have to start talking about some stronger at-home meds to help support the heart’s ability to “squeeze.” But we are thinking that is still down the road some. As are some other things they like to mention a lot just so you aren’t surprised later…
Oh, yes, Tami was a little nauseous after the procedure, so between the anesthesia she had during the cath procedure and the meds for nausea they put into her IV (zofran), she was pretty groggy and out of it for pretty much the whole afternoon and evening. (So a lot of the ignored phone calls and not updated texts and Facebook were while I sat watching Tami rest not so restfully and hoping she wasn’t going to get sick any more… ) She slept off and on and felt woozy (is that a word? does it work in Scrabble?) when she got up. She finally had some applesauce and crackers and jello a couple of different times and finally came around to feeling almost normal just in time to go to bed.
So that’s the story as of now. I’m sorry again for being so, so, SO late blogging again, but in the hospital, there’s just not a good time to sit long and write for a while. As we have said a couple of times in the last couple of days, for as little as we actually do and for as much sitting around as we always do in the hospital, we are interrupted a lot any time we do try to get anything done! More tomorrow, I’m sure, as we clarify the “what’s next” and sit around waiting for Tami’s warfarin to become therapeutic. (Remember, I promised a lesson on INR! )