Alexander’s blog

Alexander has now started his own blog. He plans to comment as often as he can on his life as a Clemson student. So far (in the first 3 posts) I am amazed by his insight and humor and commitment to his new venture. So, check it out at asclabo.wordpress.com and send him comments!

Another prayer request

I am hoping to post an update on Tami a little later today, but in the mean time we want all of you to also be praying for a friend of ours. Many of you will remember that we have mentioned before a friend that we met first at Duke in 2006. Dalton and JoAnne Thompson were there, and Tami and Dalton got their pacemakers the same day (yea, I know, they are ICD’s, but you’ll forgive me…). We have shared stories over the last 3 years as Tami and Dalton have had their improvements and setbacks with their hearts. Most recently, we knew that Dalton had been readmitted to Duke on the same Monday that we left. He had had a heart cath at home in Greensboro and had been sent (again…) to Duke. Well, they completed the heart transplant work-up (that we went through last October) and went home this past Wednesday – the apparently standard 10-day stay at the “Duke Hotel” as Jo Anne calls it. On Thursday, they received a call that Dalton had been put on the transplant list. Then, amazingly, on Friday (yesterday) morning they received another call that a heart had been located for him! WOW!! He was not even on the list for a day!! The doctors had never seen a person get a heart that quickly before, but they hurried back to Duke yesterday, and when Jo Anne called us last night, Dalton had been taken to surgery for the heart transplant! She said he was scaed and excited (no kidding!) and that everyone else was just excited (I’m sure I’ll still have some “scared” too if we ever have to get to that place!). So, although the surgery is now probably over,  please pray for Dalton’s recovery and for his family. This touches really close to home when a person with whom Tami shares so much in common medically has actually now done a heart transplant. WOW! And, of course, God is still working around us in the whole thing…they saw our transplant cardiologist yesterday a couple of times, and the surgeon is also the one we met in October. We’ll post more about Dalton’s surgery and recovery later but wanted everyone to be praying – beyond the surgery, the first days of recovery are obviously the most difficult. We are excited for our friends and thank you for your prayers for them!!

Day 6 – another end

Wow!! What an amazing day! What began with nervousness and uncertainty has ended with rejoicing and reassurance of what a mighty God we serve!

So, one of the young doctors that we have come to recognize came in just to speak this morning right before 6. In fact, she apologized for disturbing us. We had mentioned to the doctors yesterday that it was hard for Tami to sleep, especially during the weekend when she is feeling bad, when there is so much traffic checking vital signs and drawing blood and everything else during the night. So they wrote an order and posted a sign on the door “Do not disturb patient from 12-6 a.m. per physician’s order.” So when she came in at 5:55, she said, “I’m sorry I made the rule and now I’m breaking it! I hope you had 5 hours and 55 minutes of uninterrupted rest!” She also said that it looked like Tami was still in a-fib, that the attending doctor would round after 7, and that the procedure might be between 8 and 9 – just guesses on times.

The nurse came in after 8 and asked if Tami had eaten. Since she hadn’t, she said they would be by to get Tami in a few minutes. We still hadn’t seem the team of doctors, but they came by at 8:30 and quickly took Tami to the cardiac intensive care unit where they do these procedures. They said it should be about an hour and a half until she was done. So I made a few calls, emails, and Facebook/blog posts, picked up some, and went and got some breakfast.

About 9:25 the nurse came in the room and said that Tami was done. I said, “Really? That was quick!” And she said, “They didn’t do the procedure, because…her heart was in normal rhythm!” I said, again, “Really??” And she said, “Yes, sometimes God does things in His own way!” She went on to say that she had checked the EKG at the nurses station at 8:00 and had to call in that Tami was still in a-fib then. In fact, she reached into her pocket and found Tami’s strip and looked at it again and said, “Yes, she was in a-fib at 8 and she isn’t any more!” So, the great God that we serve had taken Tami’s faith all the way to the procedure room before showing everyone there that her heart had been converted “on its own.” One of the doctors in the room said, “It’s a good thing we have good medicine like Tikosyn,” to which Tami replied, “Yes, and a God above. You have no idea how many people are praying for me.” Yep, God is pretty much amazing!

OK, I’ll finish the rest of today’s story later. For now, we are actually going home tonight. Maybe not all the way home since it’s already 6:30 and we aren’t actually going anywhere yet. But we are done here. God is good and today He has shown Himself mighty again, and we are grateful and give Him all the glory for Who He is and what He continues to do in and around us!

8:35 Day 6

8:35 – Tami was just taken for her procedure. Please be praying. She should be back in about an hour and a half. We’ll post/blog/email when she is back.

Day 5

Day 4: P.S. I forgot to mention last night that Daniel and Lori Dulaney drove up here yesterday and brought Alexander to visit for a few hours. Tami wasn’t up to visiting much, but that is because it was Saturday, not because we didn’t appreciate the visit or the visitors. You’ll have to ask them sometime (Lori especially) about PF Chang’s, Durham drivers, the wrong side of the tracks in Durham, and hospital streaking.
And pray for Alexander this morning as he is driving to Georgia to spend a few days with his grandparents until we get home.

Day 5: Once again, more today is about managing the side effects of the interferon/ribavirin than about any new heart news.  We thought we had the headache/nausea under control last night, but Tami never really felt better this morning.  Finally this afternoon they changed the iv nausea medicine and that was finally the trick.

Here’s how good the medicine was… Within about 5 minutes, Tami started to say something, then she looked at me and kind of smiled. She said, “Am I slurring my words?” I smiled and said ,”Yes.” So she managed to get through that thought, but didn’t move again until she was sound asleep.

She slept really well for over 2 hours and woke up feeling much better. A little later this afternoon she had a shower and is almost feeling normal (at least her last-17-weeks-during-treatments normal…). The day nurse was amazed at how bad Tami has felt for the past two days (the whole time we have had him as a nurse) and asked if this was normal and how we managed at home – we said, “just like here – she stays in bed and takes as much tylenol and phenergan as she can and eventually gets over it!” He was very glad that Tami had perked up before he left tonight. The doctor, too, asked if this was normal and how Tami managed to work during treatments and whether she planned on working when school started back. Well, I guess she doesn’t know Tami too well, yet, does she? We will have a new attending doctor tomorrow, but Dr. Ward said she will still be sure to come see us at some point to see how the procedure went.

As far as heart items go, things are still as anticipated. She is tolerating the new a-fib meds just fine. She is scheduled for the electrical cardioversion in the morning. And assuming all goes well (and there is no reason to believe otherwise), we should be home Tuesday.

We ask that you pray specifically tonight and in the morning for the procedure tomorrow morning. The doctor guessed it might be around 8 or 9 (I’ll try to blog/email when they take her). Pray for the nurses, anesthesiologists, and cardiologists who will be working with Tami. Pray that the procedure is painless and that it is successful in getting Tami’s heart back into a normal rhythm. Pray that Tami has a quick recovery and that the Tikosyn works to keep her heart in rhythm.

We are planning on a (relatively) early night since we may have doctors, etc. in here earlier than normal tomorrow in advance of the procedure. I’ll blog, too, as soon as Tami is done with the procedure, so keep praying until then. Thank you to all of you again for all of your prayers, in addition to the calls, emails, blog comments, etc.

Day 4 = Saturday = beginning of HepC treatment week 17

Isn’t it amazing that whatever you are going to do, you enjoy it more after a decent night’s sleep? Again last night we were almost completely uninterrupted for most of 6 hours – a long time in the hospital world where drawing blood, doing EKG’s, and checking on everything else knows no night or day.

As normal, the day began with a big headache – everyone knows that’s the standard Saturday since Tami has been doing the interferon injections on Friday nights. So Tylenol at about 6 helped and oxycodone about 9:30 took some of the edge off. The headache continued worse through the day until they increased the oxycodone, when Tami finally got some good sleep. Unfortunately, that wasn’t until about 6:30 p.m., so the day had been very long. The nausea also bothered her as normal, but she thought it would be tolerable without any drugs. Well, actually, no. Unfortunately, she had vomiting about 9:00, but that was followed immediately by an iv injection to prevent any more. Little late calling for that one… Well, now she is resting somewhat again, has had more pain meds, and has had her normal evening pills, including the 5th of her new drug Tikosyn, the one to treat (and hopefully help to prevent) the a-fib. So that would be a good end to the story except that we still have an injection, and EKG, and another pill before we are done for the night at about 12:30 a.m., I’m guessing.

Otherwise, today was pretty uneventful and without much news. The doctor explained more about the cardioversion, how long it lasts, how often it may need to be re-done, etc. The big thing, I guess, is that if all goes according to plan, we should be home on Tuesday. Tami will be this doctor’s 5th patient in the last week for this regimen of Tikosyn/cardioversion, and she expects this one to be successful as the first 4. They changed their minds a couple of times about how they are going to keep Tami anti-coagulated (her blood “thinned”) before Monday – hence the new 2-a-day injections in her stomach (no fun), but that’s a detail, not really new or important information.

Obviously, we are hoping for a better day tomorrow, so we’ll see how the night is and where we are and how Tami is feeling after that. More about hepatitis treatments and less about heart stuff, but that’s normally what Saturdays have been about for us for the last 17 Saturdays. 7 to go…

Day 3

Today was a good day, full of good news and seeing more of God’s hand at work around us.

The day actually began, I guess, with a pretty decent night’s sleep last night. Tami had drugs, I got the recliner to recline further, and the nurses didn’t bother us too much. So by the time the first doctor came in at 7:30, it was almost time for it to be morning. Thankful to the Giver of sleep and the Maker of night and day for even these little things!

Our favorite cardiologist (though it’s getting to be a large pack and a tight race!) came in about 9:00, closed the door, and said, “I need to tell you some good news.” Remember yesterday’s echocardiogram (the heart ultrasound – we were asked to do a “normal person translation,” so I may add a few more clarifying parentheses…)? Well, one of the things it measures is how efficiently the heart is pumping blood – a normal person is maybe 55%, Tami has been around 20-25% for the last 3.5 years, and the dr. didn’t expect Tami’s to improve…. well, yesterday, according to a world-renowned cardiologist who read the results, Tami has “significantly improved” heart function… now the EF is 45%!! Amazing. What a mighty God we serve, who continues to do the unexpected and the impossible for those who are willing to give Him glory as He works through and around us!!

So, when the attending cardiologist and her team came by about 11:00, there wasn’t much else to talk about. Because Tami’s heart function is obviously better than when we were here in October, there is no reason to do the heart cath Monday. So they are starting her coumadin (“blood thinner”) back tonight. The new medicine for the a-fib (irregular heart rhythm) worked with no problem last night. They originally lowered the dose and gave her only half this morning, but the cardiologists re-calculated a number from the EKG and gave her the other half of the dose when they were here. The EKG’s still look normal, so she has had her third dose tonight. If the rhythm is still off by Monday, they will do the small electrical shock (cardioversion) to try to get her back to a normal rhythm.

A liver doctor came by about 11:00 to get the story about the HepC treatment. Again, so very nice, so interested in what you have to say, always asking good questions, and explaining many things much more clearly than we could so we understand more details much more clearly than we did before – that’s the pattern of encounters with all the doctors here at Duke. She returned about 2:30 with the attending hepatologist (liver doctor) who was extremely compassionate, extremely knowledgeable, and understood exactly what she needed to tell us. Long story short Tami will need to finish the last 8 weeks of her HepC treatments. What you don’t want – even though the virus is “undetectable” – is for the virus to be hiding out somewhere and to come back in 6 months and to have to start the treatment again from the beginning. Or to be hidden and undetectable and to come back after a heart transplant when the immune system is suppressed and when it would then be very difficult or impossible to get rid of! So, in the end, 8 weeks of treatment, rough as it has been sometimes, is the best option. As we decided later, this is not bad news, it’s what we knew we were already doing any way. Tami had hopes of better news (stopping these mean medicines) – that just didn’t happen.

Oh, the hand of God is in this part of the story, too!! The doctor asked who was managing the HepC treatments at home, and Tami said Dr. Spurling. The doctor stopped, looked funny at Tami, and said “Would that be Tim Spurling?” Tami said yes, and Dr. Diehl said “I worked with him in Bethesda. He’s a great guy.” So is it a coincidence that Tami from SC meets a dr. in NC who knew her SC dr. in MD 20 or so years ago?? No way!! Just another reminder that God is in all the details and orders all of our steps!!

That’s it. Tami will get her Friday night injection at 11:00 tonight. So that would be a great time to be praying!! They have ordered all sorts of pain/sleeping/nausea meds to be available for Tami this weekend. So I don’t think there can be any way this will be a bad weekend when a ring of the call button will immediately bring drugs of all kinds! Tami did say, too, that we might figure out which of these meds we can take home to prevent all the bad stuff at home for the next 7 weeks, too!

That’s it – a great day of being reminded Who is in control and to Whom to give glory and honor as we watch Him work and rest in Him!!

Day 2 p.m.

Really an uneventful day today. After they decided against the TEE, the next thing was to get some blood chemistry right to start the new medicine (Tikosyn or dofetilide are the names). So they drew more blood, gave her several more potassium pills, did an IV of magnesium, drew more blood… They did a baseline EKG since they compare some measurements on the EKG’s after beginning the Tikosyn with those from the baseline to adjust the dose down or discontinue it. They came and got her for an echocardiogram. Not sure why, they just always want one – just keeping track of any change in heart function, essentially, even though they don’t suspect there’s any change right now. They interrogated her ICD so that they have a full record here of all the fibrillations and stuff that Tami’s heart has been doing since January (when all the afib stuff actually started). Otherwise, really, that’s it. We had a quick visit from 3 friends (Thank you Julie, Sarabeth, and Terri!). We took an excursion downstairs to the cafeteria. (Do you sense the excitement?)

Unless the potassium and magnesium have come up in the last hour or so, they can’t start the Tikosyn tonight. But whether they do or not, they won’t do the electrical cardioversion until Monday, so there is really no hurry getting that started.

Other stuff, including whether they will chose even to do the heart cath also on Monday, will wait until we ask some questions of the hepatologists (those are the liver doctors in case some of you have been wondering). Hopefully that will happen tomorrow.

By the way, if you want to call, use either Tami’s cell phone or call the hospital room directly, 919-681-7319. Allen’s phone is apparently non-functioning…Turns out that even new cell phones don’t do well when they fall into water…don’t ask…

More tomorrow. Thank you all again and again for the many, many prayers!!

P.S. On further examination, it seems my phone is now working again. So you can try it, too…

P.P.S. Tami’s potassium is still too low, so they’ll check it again tonight and in the morning and see about starting the Tikosyn…

Quick update from Day 2 a.m….

After waiting all morning with no food, in anticipation of the TEE, we finally saw the doctor about an hour and a half ago. She is amazingly personable, just like pretty much everyone here, and she brought her whole team with her: a fellow, an intern, a pharmacist, a pharmacy student, the nurse, and a patient resource manager. The doctor sat on the bed, had a nice conversation with Tami, listened to everything (liked her nice strong artificial valve opening sound!), and went over the plans again. She decided, given that Tami has been on coumadin for three and half years, that the risk of clots has to be so small that there was no need for the TEE. Yeah!! Tami is very excited to avoid that yucky procedure!!

The doctor went on to say that they should be able to start the new medicine tonight (they have to get her potassium and magnesium up first, but they are working on that now with some extra pills) and that they would want 5 doses done before they do the electric shock to correct the heart rhythm. So that means Monday (as we suspected yesterday). We also found out that there is no problem to do this electrical cardioversion multiple times – in the same day, a few days later, or some time months or more later – to put the heart back in a normal rhythm.

They also don’t anticipate her INR to be down any time soon (certainly not by tomorrow), so the heart cath (if they still want to do it by then) also won’t be until Monday, So that means (yes, as we suspected) lots of sitting around from now til then. The couple of extra EKG’s per day to monitor the new medicine won’t be any excitement at all.

The cardiologists are wanting to have the hepatologists weigh in on the interferon/ribavirin treatment since the cardiologists are tending to think all of Tami’s symptoms (except the afib) seem to be related to the interferon. So now the cardiologists are wondering whether there is any way to consider cutting back on or stopping the interferon. Obviously that will depend on seeing the hepatologists and having them consult with Tami’s doctor at home, but Tami would be more excited about that than anything else they might think of.

I think that’s all for right now. I’ll blog again tonight. It won’t be posted so late tonight. We stayed up too late and didn’t sleep well with all the hospital noises last night. So we are planning to be in bed by the time the 11 p.m. EKG is done. More before then…

Day 1 again…

Well, here we go again. As expected, our visit with the cardiologists led to Tami being admitted to Duke University Hospital this afternoon. Here are some of the important details…

Tami’s symptoms of fatigue and shortness of breath could be due either to side effects of the interferon (HepC injection) or to heart failure (possibly related to the weakness of her heart and possibly made worse by the afib). So all they can do to try to sort it out, then, is to try to treat the afib and see if anything improves and to see what condition her heart is in (compared to what it was when we were here in October).

So, they want to start  Tami on a medicine called dofetilide. It is supposed to help correct the afib. It may (though they think it’s unlikely) correct it on its own. Or, after she has had a few doses, they will try to shock her heart back into a normal rhythm, and the medicine hopefully will help it to stay that way. Again, they are not optimistic that any of this will be successful given the weakness of Tami’s heart. But, before they can start the meds, they have to verify that there are no clots in her heart that might come loose when the heart starts beating normally. If they had documentation that she has been therapeutic with her coumadin for the last 6 weeks, they could proceed (since on anti-coagulation (“blood thinners”) you wouldn’t have any clots). But, more likely, since they don’t have that at hand, they will probably verify  the absence of clots in her heart by a TEE. In this lovely procedure (that Tami had once at McLeod Hospital in Florence), they put a probe down your throat so that they can get an echocardiogram (essentially an ultrasound) of the heart. Interestingly, from that perspective, you can get a clearer picture of all 4 chambers of the heart. OK, all that, and a little blood work, too, and they can start the dofetilide. After that, she gets a pill at 9am and 9pm every day and EKG’s at 11am and 11pm. The EKG’s and some blood work help decide if it’s working and if the dose needs to be reduced. Some time later (Monday it seems most likely to us) they will do the electrical shock to correct the afib and get the heart back in rhythm if it isn’t yet by then.

The other big thing they want to do is a right heart cath. This will, among other things, measure the output of the heart. If the output is essentially the same as in October, then most of what she is experiencing is related to the interferon therapy. She doesn’t seem to be having any other new or worsening symptoms of heart failure, so this would be the best result – it’s the interferon, we’re sorry, stick it out 8 weeks, and see how you feel. Oh, but she has to come off her coumadin for the cath. Arrrrgh! That’s what takes forever. That’s why we were here 8 days the last time… 3 days for the INR to come down, wait through the weekend, procedure, then 3 days to get the INR back up.

Oh, wait, she has to be ON the coumadin for the new meds, but she has to be OFF the coumadin for the cath. Hmmmm. So, they are starting her right now on heparin. That way she can be anti-coagulated while she starts the dofetilide but they can stop it quickly to do the cath whenever that is.

So, at some point, maybe Friday, more likely Monday, they’ll do the heart cath. Not painful, no big deal, Tami had that done here in October. Nothing to be afraid of in advance. (On second thought, there is nothing to be afraid of afterwards either. Either her heart is the same or better or worse. That’s what it is. We’ll just know, that’s all.)

But, since she will be anti-coagulated (and, therefore, prepared for “procedures” – one of our least favorite words…), we are guessing that they will also want to talk about doing the liver biopsy that Tami has kept avoiding. More on that topic when we see a hepatologist some time.

Then, after all the procedures are done and however long it takes to get the coumadin back up to therapeutic, and we’ll be  home.

Simple, huh?

Thanks for the prayers. We’ll keep posting as we know more specifically.