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  • allenclabo 11:32 pm on May 2, 2012 Permalink | Reply  

    Duke 2012 #2 – Day 1 (finally) 

    Well, the “late morning” time to report to the hospital wasn’t a real problem. We made a late night run for a big pre-midnight snack/meal. Tami wanted Taco Bell, but it wasn’t open at 11:45 p.m., so we had to settle for Domino’s Pizza. Not a bad pizza, actually – thin crust, light sauce – and it worked great to keep us up late. So we had very little trouble sleeping in, way past Tami’s normal early morning. Slowly getting ready and packed got us out of the hotel right at noon. Lacking anything else really to do, we were at the hospital by 12:30 or so.

    Getting checked in was also no problem. They were ready for us, and we only waited a few minutes to go back to the pre-procedure holding area. Where we stayed and waited for over 4 hours.

    Yep, over 4 hours. No problem starting 2 IV’s, drawing blood, getting some antibiotic going, answering all the same questions again (and again). But the schedule – well, one nurse finally said that today’s schedule was really no longer a schedule. It would be a “while” longer. Don’t know how long. It would be a “lot” longer – sounds like more than a “while.” Eventually, the EP (electrophysiology, see previous blogs :-)) nurse said we could choose to have another doctor do the procedure instead of waiting until maybe 6 or 7 o’clock to have it done. That didn’t go over well with Tami at all. Then, while we were deciding whether we wanted to do that, the nurse came back and said that because of Tami’s “extensive history” they thought it was better to stay with the doctor that had originally planned to do the procedure. Good answer. I think they must have rescheduled a bunch of other people, too, because pretty soon it was “not long now at all.”

    Long story somewhat shortened, the anestheiology nurse came just before 5 and took Tami to the procedure a few minutes after 5. He was typical of the GREAT service and care that we have come to expect here. Tami said he took great care of her before, during, and after the procedure. He also came back with her to the room and talked to us some more. I also talked to the doctor after the procedure, and he said it went absolutely fine. No problems, no complications. He did apologize for the late start because of an emergency in-patient procedure that was more complicated than expected. Once again, we were reminded how blessed we really are and that there are many other people here who are much worse off than we are.

    Tami has felt fine since the procedure. No nausea, no pain. God is good!

    And this has been a very long two days, so we are going to bed! Quick update I’m sure tomorrow after we are home. Thank you all for so many prayers for us this week.

     

     

     
  • allenclabo 11:00 pm on May 1, 2012 Permalink | Reply  

    Duke 2012 – visit #2 – Day 0 

    As expected, there was no news today, no developments, nothing much to report. Today was about doing various pre-admission things. Sort of Day 0. (So I guess that means yesterday was Day -1.)

    We started at 7:50 a.m. with Tami giving several tubes of blood. No problem. Next stop, just upstairs from the first lab for the formal pre-admit paperwork, etc., at 8:30. Four page info sheet, medical history (!), insurance co-pay, height/weight/pulse/bp, talk to a couple of nurses, a few more details about the procedure and getting ready for it. All done.

    Then we had the rest of the morning free before a 1:30 p.m. appointment at another clinic a few minutes away. So we did a little shopping, got a bite of lunch, and got to the clinic by 1:15. The news here is that we have NEVER had anything go wrong with anything at Duke. Every detail, from appointments to nurses to janitors to doctors and everything in between is a smooth, well-oiled machine. Everyone here is pleasant, competent, friendly, has access to information, knows what is going on, etc. So at 1:45, a nurse comes out and says that we are supposed to be at the main clinic by the hospital – where we already were this morning – that she can’t do the test there that they want – basically that they had made the wrong appointment for us and that they had changed it but hadn’t told us (that’s 2 mistakes, actually!) – and that we needed to get back to the clinic by the hospital (about 25 minutes away) for a 2:00 appointment (yep, it’s 1:45). So back we went for a quick echocardiogram (ultrasound image of the heart) and were finally done for today.

    Last bit of preparation was for Tami to call and find out what time to be at the hospital tomorrow. The doctor said it could be early or possibly “late morning.” Well, I’d be curious to know which this is…we are supposed to be at the hospital at 1:00 p.m.! And, no, Tami isn’t supposed to eat or drink anything after midnight, either. So, the current plan is to stay up REALLY late, have a serious midnight snack/small meal/dessert of some kind, sleep as late as possible, check out as late as possible, waste a little time, and eventually get to the hospital.

    So it will be pretty late tomorrow afternoon before there will be any news of any kind at all. Just pray for us. As normal it’s the waaaaaaaaaiting that is the hardest and most tedious. Then pray for Tami and the doctors and the others who will be working with her. I’ll post and blog as soon as there is any news.

     
  • allenclabo 10:53 pm on April 30, 2012 Permalink | Reply  

    Duke 2012 – visit #2 

    As many of you already know, we are back at Duke this week. Tami is not having any problem now like she was during our first visit in January this year. Instead, about a month ago, her pacemaker reached a “low battery” level, so she has to have it replaced. We were told in April 2006 when it was implanted that the ICD (pacemaker+defibrillator) would last 4-5years. Well, since it lasted right at 6 years and a month, we are pleased that it hasn’t needed to be replaced before now, and we are not complaining about having it done now.

    So, today we saw the electrophysiologist (the pacemaker doctor :-)). We had seen him once before, in September 2010. He was just as nice today, so Tami is feeling as comfortable about the procedure as possible. He will do the procedure sometime on Wednesday morning. He will completely replace the device. Tami will be awake – just sedated enough to not care :-) . The doctor says it’s better to have Tami stay overnight in the hospital just to be make sure everything looks good, so we should be home Thursday.

    A nurse ran a series of checks on the device and whether the leads are still well-placed in the heart. The doctor said the wires were still good, so he won’t bother them at all. In fact, he said he probably won’t even test the device (i.e., force the heart to go out of rhythm and make the device shock the heart back to normal), since that is more a check of the wire placement. So, that actually makes the whole procedure less scary for Tami!

    Tomorrow, Tami has blood work done at 7:50 a.m. and a consultation with the anesthesiologist at 8:30. That’s at the clinic by the hospital. Then, at 1:30 p.m., she has an appointment for an echocardiogram (ultrasound image of the heart) at another clinic back across town, closer to where we are staying.

    Then, I’m sure we’ll get some shopping in and hit one of our favorite restaurants later tomorrow afternoon.

    We don’t expect much news, but I will keep blogging each day to keep everyone updated. Thanks as always for your prayers for us this week. We are looking forward to seeing God work this week like he always does when we are here.

     

     
  • allenclabo 11:45 pm on January 10, 2012 Permalink | Reply  

    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.

     
  • allenclabo 9:19 pm on January 9, 2012 Permalink | Reply  

    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!
    :-)

     
    • Sheila & J Harrison 7:17 am on January 10, 2012 Permalink | Reply

      Keeping you both lifted in prayer <3

    • Debbie 9:47 am on January 10, 2012 Permalink | Reply

      I love your positive spin on going stir crazy…”enjoying some stress-free time together.” Hang in there. Ya’ll are doing great! Love you, Debbie

  • allenclabo 11:54 pm on January 8, 2012 Permalink | Reply  

    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.

     
  • allenclabo 11:14 pm on January 7, 2012 Permalink | Reply  

    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.

     
  • allenclabo 1:11 am on January 7, 2012 Permalink | Reply  

    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! :-))

     
    • Jen 10:45 am on January 7, 2012 Permalink | Reply

      Thanks for sharing and hope that all goes well once you are home. Not the most fun way to spend the end of break. I will keep you guys in my thoughts.

  • allenclabo 2:48 pm on January 5, 2012 Permalink | Reply  

    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! :-)

     
  • allenclabo 1:15 am on January 5, 2012 Permalink | Reply  

    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.

     
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