Duke 2012 – Day 7 – The End

Although there is a much longer and MUCH better story to tell about today, let me just get the basic stuff blogged. Tami’s INR this morning was 2.0. At 1.8 we could have argued to please, please, pleeeeease let us go home. At 2.0 (the preferred minimum) the doctor’s comment (yes, the one from yesterday with no personality) was “I’m sorry, we are going to have to throw you out of here.” So we got cleaned up,… (here’s where the other great story or two gets put in later…), waited for discharge papers, and got out of Dodge, um, Durham. Home now, both of us getting ready to go back to the “real world” tomorrow. Glad today for a good God, good doctors and nurses, and good medicines. Keep praying that Tami’s new diuretic keeps working and that her energy and strength return to normal.

Duke 2012 – Day 6

Monday, January 9, 2012
INR=1.5
New attending dr. has very little personality.
Hoping to get out of here tomorrow. No, going to do everything possible (even going home to do some shots for a few days, if needed) tomorrow.
Enjoying some stress-free time together.
Nothing else to report!
Thanks for your continued prayers!

Duke 2012 – Day 5

Sunday, January 8, 2012
Shorter than yesterday.
Nothing goes on at this hospital on Sundays. Probably a lot of gradually going crazy and feeling walls close in on you. Not much else.
INR this morning was 1.3. Since it was 1.2 yesterday and it has to be 2.0 before we come home, you can tell pretty quickly that we didn’t get the progress we wanted. To keep the story short, this slow progress was due, at least in part, to not getting an appropriate dose of warfarin last night. Tami did get another dose this morning and a larger dose tonight, but since it does take a few days to gradually increase the INR, the bottom line is that we will most likely be here until Tuesday. Outside chance for tomorrow. Don’t bet anything valuable on it.
Obviously, God still has us here for a reason. Today, Tami was able to share with her nurse about her daily read-through-the-Bible. Sometimes it’s frustrating to sit here with nothing to do and nothing to anticipate except the next morning’s blood results. But God is still good, so here we are. No doubt, by the time we are done, we will have seen God’s hand somewhere and will be glad that we did.

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! )

Duke 2012 – Day 2

Day 2, Thursday, January 5, 2012. First, I need to make a correction and an addition to yesterday’s blog. The small correction is that Tami only had one syringe of furosemide last night in her IV. It was 80 mg, but it was all at once, not in 2 doses. Just for the sake of accuracy… I also forgot to mention that we had visitors last night. Just as we were getting settled, Cleve, Vaughn, and Jackson Calcutt came from Wake Forest just to see us for about an hour. Their visit was greatly appreciated, and they are always such a blessing and encouragement to be around.

So, it seems like we are done for today. Yep, just past 12 noon and they have done everything they are going to. Tami had another dose of IV Lasix this morning and had an echocardiogram. (I was told that I need to clarify my abbreviations and technical word usage. So, “ekg” or “ecg” from yesterday’s blog is an electrocardiogram, a strip chart recording of the electrical activity of your heart. Attach 12 leads to various body locations, let it record a few seconds, done. The echocardiogram is an ultrasonic test that measures the size and function of the heart – think of the “sonogram” pictures of unborn babies, but in color and more like a movie than a still shot. End of non-medical-Dr. Clabo’s lesson today in cardiological medical terminology.) We finally met the doctor later this morning. They are most concerned that the diuretics that Tami takes every day – even the new one she tried this past weekend – aren’t working as well as they should be. So whether it is just the fluid retention (the result of congestive heart failure, which is one of Tami’s conditions) or whether Tami’s heart is pumping significantly less well is hard to say. So that is what they will determine from the heart catheterization tomorrow. (ok, one more time… they insert a tube into a vein in your groin and run it up into the heart and measure the pressures inside the heart chambers – if the pressures are high, it’s because the heart isn’t pumping as well as it should be) The results of that procedure will tell the doctors a lot about whether Tami’s heart is the same or whether it is weaker than it has been before.
So here is what you can pray for. First, that Tami’s heart is still as strong as it has been and the heart cath shows that. Second, that we don’t go stir crazy just sitting here until tomorrow morning and then again all weekend while she starts back on warfarin and her INR comes back up (Ok, that can be tomorrow’s lesson ).
Oh, and by the way, just because I am posting the majority of the news here on the blog doesn’t mean that you can’t call or text or email or Facetime to communicate with us directly. We don’t mind chatting when there is nothing going on (most of the time), and we are encouraged knowing that you are thinking about us!

Duke 2012 – Day 1

It has been a busy first day (1/4/12) for us at Duke. We got here about 4:00 to be admitted. We met the cardiology resident, a transplant cardiology fellow, and the day-shift nurses. They did an x-ray and an ekg (yes, I know it should be ecg…). They finally got an IV started after the first tech tried and missed 3 times, so Tami will have some good bruises to show for that. They also drew 7 vials of blood to check for pretty much everything. They gave Tami 2 syringes of Lasix (furosemide) in the IV (total of 80 mg if you are following the medical details). Of course, they are measuring her fluid output, so Tami asked how much they expected to get. Of course, it’s different with each person, etc., so she asked how much they had collected so far. The nurse checked and said they had collected 1000 cc (about a quart) so far and that he was amazed that they had gotten so much already and that he wouldn’t have expected nearly that much from just looking at Tami. So I’d say that’s some good news so far. They are planning to do an echocardiogram tomorrow just so they have a recent one here to compare with the one that was done in Florence a couple of weeks ago. They have scheduled Tami for a heart catheterization tomorrow (1/5/12), but that will depend on her anti-coagulation level tomorrow – today her INR was 2.4, but they want it down to at most 1.5 before they will do a procedure. Most likely (we think) that will be Friday, instead. So, we will try to get some sleep, meet the transplant cardiologist who is handling Tami’s case tomorrow morning some time, and see where we go from there. So, not an exciting first day, but it seems like good first progress with eliminating the excess fluid. Thanks for your prayers. I’ll be sure to blog more tomorrow.

Duke 2012 – Day 0

As most of you have heard or read by now, we will be going back to Duke tomorrow (1/4/12) for Tami to be admitted. We were there last week for a visit with her cardiologist – a regularly scheduled appointment, but more urgent because she hasn’t felt her best for a couple of months now. She has had some shortness of breath, a dry cough, and some steady weight gain, all symptoms of a flare-up of her congestive heart failure. Normally her symptoms, especially the water retention that is evidenced by the steady weight gain, is managed with an additional diuretic pill (metolazone, if you want the medical details ) a couple of times a week, but that has been ineffective recently. So, after a new diuretic that they gave her to try for the past few days (torsemide, along with metolazone) also hasn’t had much effect (in terms of weight loss, usually a good indicator), they told her today that they’d like her to come back and be admitted. They told us last week that that would be the next step. In fact, her cardiologist here in Florence recommended that a couple of weeks ago, but we wanted to get the Duke doctors’ opinion first. So, we are going with two things in mind: first, IV diuretics (furosemide (Lasix) based on past experience) to get rid of the fluid that she seems to be retaining, and, second, a right heart catheterization to see how her heart is working. This procedure, which she has had before in October 2008, is the best way to see how well her heart is functioning and whether anything has changed in her heart’s condition since 2008. (Yes, for those of you following along, it has been over 3 years since we were at Duke being told first that Tami needed to be put on the heart transplant list and, then, that she couldn’t be on the transplant list. God is good for providing over 3 years since that time without significant deterioration of Tami’s heart function as far as we know!) So, we will get there tomorrow, go on IV furosemide, go on IV heparin to manage her anti-coagulation (“blood-thinning”) while she comes off of her warfarin (Coumadin), probably sit around doing the same on Thursday (it’s about 2 days to get off and 2 days to get back on the Coumadin from past experience), probably have the heart cath on Friday, if all goes well, then sit around some more for the weekend and see what Monday holds. That’s a long 5 days or so, so keep us in your prayers. And stay tuned to the blog for daily (or more frequent) updates.

Writing adventure, Day 7

Well, I haven’t posted since Day 2. That’s because I haven’t had the paper out since then. Day 3. Zero. Likewise for Days 4-6. But it’s a new day, so make today successful anyway, even if I have been so busy grading papers…don’t get me started…
Day 7 – completed editing to chop word count from 7351 to 7104! So a bigger cut tonight than Days 1 and 2 combined!! So 86 + 78 + 247 = 411 words removed via re-writing, eliminating redundancies, etc. And, by the way, I am up to page 17 of 25, so about 2/3 done with the editing chunk. The last 3 pages are references (yes, a little tweaking is needed). Then I have a Supplemental section of additional Tables and an Archive section that will both be tedious and time consuming. More on those when I get there. But for today, progress. See you tomorrow!

AlPaWriMo Day 2

Well, I’m not writing a novel, and it’s not a national phenomenon, but Allen’s Paper Writing Month is off to a successful start. Day 1 I made the editing changes through page 5 of the manuscript and reduced the number of words from 7515 to 7429. Two things – the NaNoWriMo goal of 50,000 words in 30 days requires 1667 words per day. So, in contributing -86 words toward my completed manuscript, I guess I am technically 1753 words behind. But that would be if I was writing a novel. Which I’m not. Second, that much progress may not seem like a lot – to you. But to me seeing edited pages falling to the floor (and then into the garbage) is worth more than the mere 86 words that were lost. So Day2. 7429 words to 7351. Another 78 words removed and editing changes finished on another 8 pages. I think I can. I think I can. See you tomorrow.