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  • allenclabo 12:33 am on June 26, 2015 Permalink | Reply  

    Another update, 6/25/15 

    We have realized in the past month or so that this whole journey has a lot in common with a roller coaster ride. Moving unbelievably fast, unexpected twists and turns, tedious uphills that you know will be followed by sudden drops, breathlessness and confusion about what is actually happening. So we were at Duke on Wednesday, 6/24, for a regularly scheduled follow-up with the transplant cardiologist. (We also had another visit at the research clinic and a planned echocardiogram as part of that protocol, even though Tami isn’t taking the trial drug anymore.) The transplant cardiologist (yes, Tami’s favorite, favorite doctor! :-) ) asks how she’s feeling (still not as much stamina as before), arranges (with some difficulty and several consultations with a nurse) to get Tami’s next Hepatitis B vaccine, answers a few questions Tami has about her medicines and condition (all good), checks the PICC line (it’s in really good shape), puts in prescriptions to modify a couple of medicines to try to help with congestive heart failure symptoms (ok), then says “let’s get some blood cultures so we can be sure the infection is still gone” (remember that this was the reason for our last hospitalization) “and then we can get you listed.”……….Wait, what? Wasn’t she already listed?!?? Well, yes and no. Huh?? They can’t/won’t transplant with an infection (of course), and all of the cultures we have had done before were while Tami was on antibiotics. Right, and the antibiotics had already cleared the infection before we left the hospital, and that’s why we were told that she was listed. Well, sort of. (You got that roller coaster feeling yet?) Tami has been on a “side list,” and, as it turns out would not have been called in the past 19 days even if she had had a match because she hasn’t been on the “active list.” Which we had never heard before. And that final move to the “active list” requires that the blood cultures are still clear after finishing the antibiotics. Which we had never heard before. Sigh. So, as long as the cultures are clear (again, for the third or fourth time again) by Friday, then Tami WILL be on the active list and could (then, finally, yes) actually get a call any time if a matching donor heart becomes available.

    Well, that discussion was at the end of a long day that seemed to be made longer by lack of communication among various players in the research unit where Tami had previously been doing a drug trial. When she started the at-home IV med back in May (during our first hospital visit this year, when we did all of the transplant work-up stuff), she was no longer qualified for the trial (ok, that’s fine, just a few less trips to Duke for those follow-ups, but we’ll be going more often for transplant follow-ups, so it’s kind of a wash). But some time after that, the nurse coordinating the drug trial called to say that the drug company still wanted additional blood samples, EKGs, echocardiograms, etc., even though Tami is not taking anything at all (either trial drug or placebo), so could we still keep the last two research unit appointments? Well, since we were coming up anyway, they scheduled a visit for Wednesday – no problem, come in the morning, have some blood drawn, have an EKG and an echo, let the dr see you for a quick evaluation, complete the paperwork, get paid for a visit, and still have time before the afternoon visit to the transplant cardiologist. Sounded easy, didn’t work out that way. Let’s just say lots of communication problems, and, in the end, Tami will still have to do an echo at the next (and last) research appointment. Which, of course, can’t be the same day as the next follow-up with the transplant cardiologist. (Are you tired yet?) And we got onto the freeway at 4:55 which was a terrible idea! :-(

    News? None really – Tami should be on the active transplant list by the end of the day Friday, a couple of new and modified meds, return visits in 4 and 8 weeks and about every 4 to 8 weeks thereafter until the transplant. Be sure to collect all of your personal belongings as you exit the ride. And thank you for continuing to pray for us and to support us in every other way as well on our journey.

     
  • allenclabo 5:51 pm on June 15, 2015 Permalink | Reply  

    Update on Tami – Monday, 6/15/15 

    Many people are asking regularly for an update on Tami’s condition, so I thought it was worthwhile to give a summary.

    Generally, Tami is doing well. Now, I have to clarify some what that actually means. In fact, I did a blog post on 12/17/08 with the title “Yes, she’s fine” and other misunderstandings that addressed the same issue. The infection that put her back in the hospital at Duke from 5/31-6/5 has been cleared. She has been doing IV antibiotics by way of her PICC line since we got home and will continue that for a couple of more days. Her stamina is still pretty low. We have learned that for each day in the hospital it takes 3 days to return to your normal activity level. We were in the hospital 7 days the first time, home for only 11 days, and back in the hospital for 6 more days, so there are still a lot of post-hospital recovery days to go before her stamina will be back to what ever “normal” may be. This is frustrating but is part of the current reality. In addition, Tami is still experiencing some congestive heart failure symptoms, especially being tired and out of breath. Of course, this is on top of being tired and having no stamina from having been in the hospital, so the whole “tired and out of breath” thing is doubly frustrating right now. Tami is not hurting in any way, her appetite is fair to good depending on the day, and she is sleeping as well as normal.

    There is also Tami’s PICC line, the permanently installed IV line through which she is receiving 24/7 infusion of the heart medicine milrinone to support her heart as the “bridge” to the transplant. We have to change the pump and the IV bag of medicine every 48 hours. So between the daily IV antibiotics and the every other day pump and bag change, Allen has turned into an acceptable nurse. :-) There’s nothing difficult to do, especially after practicing every day or two, mostly keeping the access ports clean, but, again, it’s part of the current reality. And, yes, it is annoying to walk around all the time (and shower and sleep and anything else you do in a day) with a tube and a pump and a carrying case attached to you, but, yep, that’s what “normal” looks like right now.

    Thank you, as always, for your prayers, friendships, and support in every way! We continue to pray for the donor family as well, in addition to praying that God will continue to be glorified in our journey!

     
  • allenclabo 11:31 pm on June 9, 2015 Permalink | Reply  

    Fundraising, part of the reality of preparing for a heart transplant 

    One of the many people that we talked to during the week of testing, interviewing, etc., for Tami to qualify to be placed on the heart transplant list was a financial adviser. Besides giving us a review of our insurance (it’s apparently pretty good :-) ) and estimating our recurring costs for hospitalizations, medicines, etc., he also mentioned that it is almost always a good idea to consider fundraising. Apparently, the cumulative financial burden over the months and years to come of medical, travel, and not uncommon “unexpected” expenses can be significant, even with good insurance. (Honestly, without good insurance, I think it would likely be totally devastating.) So, he said the typical recommendation is to raise $50,000 to have available as an additional resource, outside our own ability and beyond insurance.

    (Now I have to say that even having to consider the possibility of asking others for financial donations to help us is a terribly humbling consideration. But that is the reality of what’s down the road on this journey, and it’s likely that removing our pride and allowing us to be blessed by many, many people is also part of what this journey is about.)

    As of now, there are already 3 different fundraising activities in the works. First, Tami’s good friend Julie is organizing a fundraiser with silent auctions, etc., etc., for later in the summer. I don’t know a lot of details, but I will share as much as I know as soon as I know. But, believe me, Julie and her team are already hard at work on that. So, stayed tuned for more on that event. Second, we (and that really means Julie, again) have started selling red bracelets that say “PRAY FOR TAMI” and “EPHESIANS 3:20″ (which many of you already know is Tami’s favorite verse). Many of you saw these at church Sunday. The good news is that they sold quickly, and the other good news is that more have been ordered. So, if you are in Florence, ask us who has them – if you are not nearby, we can get you some if you let us know. At even $3 apiece (the recommended minimum), it makes a difference for us, and we appreciate the support and attention these have already brought.

    But tonight the big news is the third prong of the current flurry of fundraising activities. Tami’s friend Reneé has set-up and launched a crowdfunding website to support Tami on her heart transplant journey. To see that website and to donate that way, go to http://www.youcaring.com/PrayForTami , our personalized funding website. Please share this web address, share from the website to social media, and help us get the word out that this is yet another way that we will be raising the funds that we anticipate needing before, during, and after Tami’s heart transplant.

    As always, thank you for your prayers and friendship.

     
    • Tammy Maxson 8:12 am on June 11, 2015 Permalink | Reply

      Tami, Allen and Alexander you have blessed so many lives and inspired so many that now it is our turn to return the favor. We are praying for you always and have added to the caring.com fundraising site as well as shared the post publicly asking for others to bless you as well. May God continue to be your rock and provide you the continued strength both physical and emotional that you need for this journey. Love and miss you all. Craig and Tammy Maxson

  • allenclabo 6:46 pm on June 4, 2015 Permalink | Reply  

    Duke 2015 – Day 5 

    Thursday, June 4, 2015

    I am blogging earlier today because we had some unexpectedly good news today and because I am tired of it being so late before I get around to blogging every night.

    We actually got more and better sleep last night that we recall ever getting in a hospital. Even when the nurses changed at 7:00, they didn’t bother us until we opened our door at 8:30. (Yes, they drew blood and did vital signs at some crazy time like 4:30, but we ignore that because there is nothing you can do about it.)

    Eventually the doctor team came by. After discussion with the infectious disease team (remember them from last night?), the transplant doctors decided that we would only need one set of negative cultures (yay!) and that the IV antibiotics at home would only need to be for 2 weeks (yay!). Even better, the cultures they began yesterday are showing nothing so far! Since the infection has responded to the antibiotics so well, everyone is thinking that there will be nothing tomorrow either – so that will be the one completely negative set of cultures that we need to go home! Yep, that’s right, as long as the cultures stay negative, they are planning for us to go home tomorrow afternoon (the doctor said, “do you think you can  handle that?”)! But looking ahead, some time tomorrow they still have to place a new PICC line and the infusion company will teach us about how to do the at-home antibiotics, so tomorrow will be a crazy, chaotic parade sort of day. So look for a late night update tomorrow from home :-).

    Besides that they also want Tami to start on an accelerated Hepatitis B vaccine. Apparently, it’s one of those things that everyone knows you should do before a transplant but no one makes a point of emphasizing or double checking. But the infectious disease doctors were all over it (there’s a specialist for everything up here!), so Tami should do the first shot tonight and have two more shots in the next 3 weeks to complete that vaccination series.

    Otherwise, a truly quiet day. We went down for lunch today and even sat outside for a few minutes. The field trip was interrupted by the fact that it was rather cool today and that Tami’s IV pump battery got low.

    On the way to get dinner, hopefully our last one for this trip up here. Thanks for continuing to pray for us!!

     
    • Danna (Goines) Shirley 8:52 pm on June 4, 2015 Permalink | Reply

      Great news! I’ll be praying for a good report and a safe trip home. Loveya, Danna

    • Myra 9:00 pm on June 4, 2015 Permalink | Reply

      Wonderful news! So excited to know that y’all will be headed home so soon. Give that sweet lady a hug from me. Take care and may God bless.

  • allenclabo 12:33 am on June 4, 2015 Permalink | Reply  

    Duke 2015 #2 – Day 4 

    Wednesday, June 3, 2015

    Today was pretty uneventful. The doctors told us that Tami seems to be responding well to the antibiotics. Her white blood cell count was back to normal, her kidney function has improved, and she hasn’t had any fever for a day and a half. They have identified exactly what type of bacterium has caused the infection, so they will make a decision today exactly the course of antibiotics to begin today and to continue whenever we get home. In addition, they confirmed that the Hep C test came back negative, so the only thing between Tami and being listed on the heart transplant list is clearing this infection.

    The only downside is that they want to have two blood cultures that are clear of bacteria before we leave. They drew blood for cultures this morning, but it takes 2 days to be sure that nothing is growing. Then they want to do another one (so that will be Friday) and wait to be sure it is clear. Or not. If not, then return to the beginning and repeat. Then, of course, after they have the negative cultures, they will put in a new PICC line and then we might be able to be home.

    But, of course, Tami will be listed as soon as the first cultures are negative, so then we could just stay or just turn right back around and get a heart!

    The next visitor today was Tami’s transplant coordinator. (Ok, just on this whole hospital time distortion thing again, I just mentioned that I was going to talk about this. Tami said “Was that just today? Oh my goodness, that seems like days ago!” So we actually had to think about who we had called and when and what she was feeling like at the time and the whole process just to convince ourselves that that was actually today…Scary…) So, anyway, each transplant candidate is assigned to a specific coordinator. Another one had been on rounds when we were here before, so we hadn’t met the person who will actually be the one who will call Tami when her new heart is available. (There is always somber, serious consideration whenever we actually think or say that.) So we talked to her, she answered a few more questions, and Tami re-signed a form that was lost somehow.

    Then we had a visit from 2 volunteers – a sweet older couple who come on Wednesdays and visit and encourage pre- and post-transplant patients. They stayed for a while telling old stories and talking about his 5-tuple bypass 17 years ago and telling us about other places to eat in the hospital and all kinds of stuff. Just sweet.

    Tami spent most of the day sitting up in the recliner. Not that she couldn’t before, but it made a big difference in her attitude and general well-being to not just lay in the bed all day. We even got in a quick (ok, not quick :-)) 2 laps around the floor this afternoon.

    Then we had a visit from the infectious disease team (that sounds like a gang of bad guys on some old-school Saturday morning cartoon or something, doesn’t it?). Anyway, they were just verifying for us that the bacteria that was found was a very common one that can be treated with a once-a-day IV administration both here and whenever we get home. (Ok, for those who want technical details, the bug is Klebsiella and the new anitbiotic is Rocephin.) We are waiting for the first bag of the new drug tonight.

    I really think that’s all – I guess, having written it all down, that it wasn’t really a quiet day. Maybe no procedures and no complications and no really bad news makes for a good Duke hospital day even if we have a parade in the room all day.

    Thanks, as always, for reading and praying!

     
    • kathy 6:39 am on June 4, 2015 Permalink | Reply

      Thank you for keeping all of us so well informed. I love your sense of humor. Love and prayers for you both.

  • allenclabo 12:33 am on June 3, 2015 Permalink | Reply  

    Duke 2015 #2 – Day 3 

    Tuesday, June 2, 2015, much later than it should be for me to not be in bed yet…

    Really not a lot of news today. We actually got a decent night’s sleep with only the normal “morning” interruptions at ~4:30 for blood draws, EKG, and vital signs. (How could your vital signs be bad from 12:00 a.m. to 4:00 a.m.? You are either sleeping or dead – either way, leave me alone until it’s daylight. Seriously.) The nurse didn’t even come back at all until almost 8:30, an unheard of late hour in the hospital world.

    The doctors had mostly good news this morning – Tami’s white blood cell count is lower today, so that means the infection is decreasing and the antibiotics are working, and her kidney function has improved, so that’s good and helping to eliminate the infection. They don’t know exactly what kind of “bug” she has, but from what they can see from the blood cultures so far, it appears to be a common type that can be readily treated with normal regimens of antibiotics. The only concern still (not bad news, really) is they want to be sure that the bacteria aren’t sticking to Tami’s mechanical valve or pacemaker wires, so they still want to do the TEE. (See last night’s post if you missed all about that.) Oh, and speaking of good news, by the way, the doctor said that he had heard, but hadn’t had confirmed by a piece of paper, that Tami’s last lab work to get on the heart transplant list – the check that her hepatitis C is still gone – came back negative! So maybe getting listed will happen while we are here, too.

    So the morning stress was waiting and worrying about the TEE procedure with her stomach kinda of woozy from the pain medicine she got for her headache which was almost but not quite gone while not being able to eat or drink.

    The doctor’s comment about the schedule was that the procedure would be around “today o’clock.” Another doctor, from the echo lab came in about 10:30 to explain more about the procedure (nothing new except that they do have you rather significantly sedated) and to say it might be in the next 30 minutes or so. And about 5 minutes later they were on the way to get her. (For another blog: Time is a funny thing in a hospital. Not only is there no day or night, hours become minutes and vice versa, and days that seem to have nothing planned are just as long and get just as little accomplished as days that are a parade of doctors and nurses and procedures. I’m wondering if maybe the clocks are fake….)

    So Tami was gone for just over an hour to have the TEE. We haven’t had any official report about it yet, but Tami, in her semi-conscious condition, thinks that she asked what they saw and thinks that they said that they didn’t find anything – which will be great once the doctors confirm that.

    After that, Tami spent most of the rest of the day napping off the anesthesia and narcotics and whatever else she got. She was immediately less stressed, her heart rate was down significantly, and she generally felt better. Oh, and she hasn’t had any fever at all for over 24 hours now, so that’s a big sign that the antibiotics are definitely helping get rid of the infection.

    For the future and coming home and stuff, that’s the big question. The best we can understand, they need to run some more blood cultures that show the bacteria are gone (and the cultures take 24-48 hours to do, remember?), and then 24 hours after they are sure of that, then a new PICC line can be inserted, and then maybe we can see about coming home. We  haven’t even tried to ask that question, honestly, since the infection and the necessary procedures have been first priority for the past two days. Yes, for those of you playing along at home, we got here Sunday night and it’s now Tuesday night (ok, really early Wednesday morning…) – remember that thing I said about time being an odd thing? yep, that again.

    We are sure to know more tomorrow morning about the kind of bug (not that anyone except Alexander and few of you medical/biological types will care at all) and a possible schedule for getting out of here. We aren’t holding our breath or being in any hurry, of course, but we like to have a plan and a goal.

    More as we know it, of course. And thank you all for your continued prayers!!

     
    • sonya 12:48 am on June 3, 2015 Permalink | Reply

      thanks for all the updates Allen. We are all praying!

  • allenclabo 10:32 pm on June 1, 2015 Permalink | Reply  

    Duke 2015 #2 – Day 2 

    Well last night (and by that I mean Sunday night for those of you who are as confused as we are about what day is what…) the excitement started about the time the blog was posted. We were hoping for some kind of sleep since it had been a liiiiitle bit of a long day between 2 hospitals and a drive…. Well, no…. Lights out at 12:00, at 12:15 transport arrives to take Tami to do an x-ray (can you tell where this story is going?), at 1:00 labs are back and everything is out of whack so they start an iv of calcium to help reduce potassium, then they wanted an EKG (but, then, no, in fact, they didn’t…), then the iv pump is done so it starts alarming (it’s 2:00 by now), then it gets blurry and then it’s 4:30 and they are drawing blood, and then Tami had another spell of shivers, and then it’s morning and by 7:00 the first dr comes by and the nurses change….We finally decided that sleep in a hospital is overrated. Maybe sleep deprivation is actually good for your heart. So it seems sometimes.

    On the other hand, we are grateful to have great nurses, doctors, and so many others caring for us. We are grateful for access to good medical care. We are grateful for strong medicines and a strong God who knows about infections, knows every bacterium by name (even before the cultures get back), and has a plan that He is working out in our lives every day for our ultimate good and for His glory. In fact, I am grateful and thankful for a recliner to sleep in.

    As of this morning, the doctors didn’t know very much yet. It takes the blood cultures 24-48 hours to grow, and it hadn’t even been 24 hours since we called and went to the ER at home. They are, of course, concerned that whenever there is an infection in the bloodstream and a patient has implanted metal pieces, that some bacteria like to stick to metal things – like PICC lines and mechanical valves and pacemaker wires – oh, yeah, Tami has all of those. So to eliminate the likely source of the infection and also to remove the one thing that is removeable that could help the infection grow and be harder to treat, they removed the PICC line. No problem, just add two normal IV lines in the other arm, swap the meds, pull the PICC out. No, really, no problem.

    The less likely landing place for these bad bugs is Tami’s valve. But they want to be sure. So they have scheduled another echocardiogram (ultrasound of the heart) for tomorrow to look specifically at the heart to be sure, as we heard more than once today, that there is no “vegetation” on the valve. That sounds easy enough. But to get the look they need, they will do a transesophogeal echocardiogram (TEE). Of all the procedures Tami has had over all these years, the TEE is without question at the top of her list of least favorites! No question. Heart surgery is a piece of cake. Blood draws and IV line placements get no reaction at all. Heart caths are boring. She did the last cath with no sedation at all (yawn). But the TEE, that’s another story. Simply put, they place the ultrasound probe down your throat because that’s the best angle to see the top of the heart where the aortic valve is. The problem is…read that last sentence again…”they place the probe down your throat”…while you are awake (sort of)…and it stays there awhile while they take pictures and measure stuff. Tami has had it done once before – she hated it – she was told that she did much better than most patients do with it – didn’t matter, she still hates it. Honestly, the doctors think the chance of the valve having any bacterial growth is very, very small, but this is the prudent thing to do to be absolutely sure and to be sure, too, that the antibiotic regimen to follow is the correct drugs and the correct length of time. So, the big prayer request for tonight is for Tami to have peace tomorrow about the procedure, that it goes well, and that there is no infection on the valve. No idea what time  – I’ll blog/FB/etc. when we know and/or when she goes.

    The rest of the day was actually really calm. Tami got several 15-20 minute naps, and we actually both slept for about 45 minutes late in the afternoon. Tami’s fever has been very low, around 99 to 100.5, and her chills and shivering have not been a problem after this morning. She has had a pretty bad headache all day that hasn’t responded to Tylenol and even something stronger. We are hoping that gets better as the infection gets more under control.

    The resident dr did come in tonight to tell us that the blood cultures are actually growing, so, yes, there is definitely a bacterial infection of some kind. They can’t tell exactly what type of bacteria they are, yet, but, by the shape of them (I’m not doing any microbiology here, just repeating what we were told :-) ), they appear to be common and readily treatable with a normal, short (=2 weeks) regimen of antibiotics. They will know more exactly what kind of bug and, therefore, what antibiotics are best to use in the next day or so.

    I think that’s it – there is a bacterial infection, they are doing a TEE to be sure there’s no infection on Tami’s mechanical valve, the PICC line is out for now, and the antibiotics seem to have Tami’s fever under control.

    Thank you all for reading and, most of all, for praying for us every day!!

     
    • Randy Newbrough 11:21 pm on June 1, 2015 Permalink | Reply

      Keeping Tami and you in our prayers! Thanks for the updates and letting us all know what is going on. Praying that the doctors get this under control quickly and the two of you can get back home!

    • Carter's 11:23 pm on June 1, 2015 Permalink | Reply

      Love you guys and praying!

    • SALLY HONEYCUTT 3:41 pm on June 2, 2015 Permalink | Reply

      FOLLOWING ALONG WITH YOUR BLOG…PRAYER’S FROM ARIZ.. THINKING ABOUT YOUR FAMILY AN WILL CALL ZELMA . GOD’S LOVE TO YOU BOTH

    • Gail Garrison 7:04 pm on June 2, 2015 Permalink | Reply

      Following your blog. Thanks for taking the time to do it. Prayers for all of you.

    • kathy 7:30 pm on June 2, 2015 Permalink | Reply

      That procedure sounds awful. Your sms family prayed for you both this morning with pastor Cribb leading in prayer for God’s care for you both. He prayed boldly and we all agreed that our Lord is caring for you and will give you grace and comfort during these difficult days. We all love you and can’t wait for the news of your healing. Love and prayers are with. you. Kathy

  • allenclabo 11:27 pm on May 31, 2015 Permalink | Reply  

    Duke 2015 #2 – Day 1 

    Sunday, May 31, 2015

    Tami’s quote of the day: “I don’t think that Allen was thinking that he’d be blogging again this soon!”

    True.

    But, as you see, I am. So, more than likely, that means that we are back at Duke again for the next part of this journey. Not what we had planned for this Sunday, but it’s God’s plan playing out in His time in His way. As a friend commented today, “He goes before us and behind us.”

    So how did we get back here since we were sort of getting used to our “new normal” as Tami has been saying? Tami had a bit of a chill last night, but we didn’t think anything of it. But when she got up today, got dressed for church, and was shivering uncontrollably, we decided to see if she had a fever. Yep. First 101, then 102, then it settled at 102.5. Not good. A probable sign of some infection. And since with a PICC line the possibility of infection is real, and with a severely compromised heart an infection is a major concern, we knew we needed to call Duke. We very quickly spoke to one of the doctors that we had seen when we were just here last (a comforting and God thing – “He goes before us” to make sure a dr we know (and who knows us) takes the call today :-)). They wanted to see Tami but didn’t want us to make the 3-hour trip without having seen a dr at all, so they suggested we go to the local (McLeod for you Florentines) ER,  have some blood drawn, start some IV antibiotics, and then get transferred up here.

    So, that’s pretty much what we did. Got great service at McLeod ER (ok, health professional friends, I know it’s the “ED” now, but you’ll forgive the commoner’s jargon), they were in contact with Duke right away, and Tami got med and fluid for fever and big-gun antibiotics to squash any sort of unfriendly bacteria (well, probably the friendly ones, too…). We were reminded again of how many amazing friends we have in Florence, as several of them came by to visit while we waited this afternoon. The transfer didn’t happen until Duke had a room become available, so we hung out at McLeod until Tami got an ambulance ride at 4:15. I followed soon after, and here we are.

    They have taken some more blood for cultures, and that’s really the end of the story. We did find out that Tami’s transplant cardiologist is on hospital rounds this week (again, “He goes before us” :-)), so we will be glad to see him in the morning (in that odd, surreal, glad-to-see-a-dr-in-the-hospital kind of way…).

    Again, many thanks for all of your prayers for us as we are here again.

     
    • Danna (Goines) Shirley 10:23 am on June 1, 2015 Permalink | Reply

      Oh, Tami, I was just going to email you at home to see how you were doing and decided to check the blog first for any updates. Allen, thank you for being such a conscientious reporter. Paula and I have been praying for Tami and I put her on our prayer list at church, Napa Valley Baptist (CA). Send our love…Danna

  • allenclabo 12:14 am on May 24, 2015 Permalink | Reply  

    Duke 2015 Day 7 and following… 

    I have been reminded some (NO, a lot!) that I haven’t updated since last Monday. Ok, alright, I give up…It’s important. I’ll do it. Here we go.

    Quick summaries:

    • Tuesday=Day 7 – saw drs., transplant coordinator, transplant financial adviser, home transfusion nurse [big event here: Tami was taken off of the hospital IV and onto her own infusion pump that she will wear, presumably until her heart transplant and that she must change the IV bag on every 2 days], trial drug dr. for final physical, trial drug nurse for final EKG and paperwork, PICC line dressing change, oh, yeah, we got to go home, even though it didn’t seem like it since we would be able to because it was CHAOS in the room all day again!
    • Wednesday – home – really enjoyed sleeping in our own bed again!! Calls all morning from home health nurses about the infusion pump and all sorts of other things (ALL new stuff to us!), visit from a home health nurse, etc. Tami’s comment all day was about our “new normal” – how do you do normal, daily things with an infusion pump that can never be disconnected? [Think getting dressed, showering, etc., with an IV line in your arm attached to a pump…] And several friends came by just to see Tami with their own eyes and know that she is ok. On that note, Tami is feeling much better – sleeping well, eating well, not out of breath, etc. It’s just the mental and emotional adjustment to all the newness and the transplant in the not too distant future that are difficult.
    • Thursday – first official home health nurse visit to draw blood (weekly) and to help with the first bag change on the pump (actually, it’s a change of pump at the same time) – easy conceptually, very difficult emotionally – now it’s really real – this pump isn’t going away and it’s going to be an every second day task to change out the pump and bag of IV drug solution. Tami didn’t handle it well – and that was the beginning of a long, emotional afternoon and evening. Lots of phone calls from friends and family included tears – nothing physically wrong, just the realization of all of the new routines. The day actually included a good lunch visit with a friend. Top news of the day: Tami was approved today “essentially unanimously” by the transplant team at Duke to move forward toward being put onto the heart transplant list. We are still waiting on one lab result, and the medical information has to be submitted to our insurance company to approve, before Tami will be listed.

    *Friday – Before I forget, we have already been blessed by SO many friends bringing meals and offering to bring meals and to do so many other things for us. We can’t begin to say “thank you” enough (although we will definitely try to thank each person individually and personally)! Again, today, lots of visits from friends and an unexpected re-visit from home health. Tami got out by herself today for a little while, and that went ok,  too. Tami’s Mother’s Day present is coming together – the dirt was delivered for a raised bed garden for some vegetables and flowers – Allen and  Alexander will have to work on that during this weekend. Surprisingly, Tami got a message from Duke that our insurance has already approved the transplant, so we are one step closer to be finally listed. We should know next week when Tami’s is actually, officially, finally listed. (There is a lot of emotion and a lot of detail to put our little heads around with the whole transplant process – that may be the topic of another “random thoughts” blog someday.)

    • Saturday – Each day makes the reality of this new normal seem a little more normal, even as abnormal as it actually is. In fact, Tami’s favorite word this week has been “surreal” – it just doesn’t seem to be real – the magnitude and ramifications of every part of being placed onto a transplant waiting list, of having a continuous infusion pump, of being blessed by so many people in so many ways, of being prayed for by so many people in so many places we can’t even imagine, of just adapting to living everyday life in this new way, are just beyond grasping and believing. Yet, here we are. [A quote from the book I am reading now, “Jack Staples and the Ring of Time,” by Mark Batterson and Joel N. Clark (no doubt the subject of some future blog :-)) seems relevant: “It wasn’t the normal Jack was used to, but even insanity, if experienced long enough, can start to feel like a certain kind of normal.”] Second bag change (yep, it’s been 2 days already since the first one) was much easier mechanically and emotionally.

    So here is the even quicker summary: we are home and back to normal (yeah, that word again) activities; Tami is feeling much better, definitely MUCH better than last Wednesday when we ending up staying at Duke; Tami is on a continuous infusion pump as a “bridge to transplant” (best we can tell that bridge may only be 3 or 4 months long); Tami has been approved at Duke and by the insurance to be listed on Duke’s heart transplant list, and we are just waiting for one result to be listed. We will see all of our friends and fellow believers at church tomorrow, so we are sure there will be lots of questions, hugs, tears, and prayers. We will be mostly humbled, considerably blessed, and more than happy for all of that and more.

     
    • Danna (Goines) Shirley 3:33 am on May 25, 2015 Permalink | Reply

      Hi Allen and Tami,
      Aunt Sue gave me your blog so I could keep up. Allen, you’re doing a great job with all the “info” that’s coming down the pike. We’ve been praying for you…as I’m sure everyone is who has ever known you. God gave you a new heart when you got saved and He’ll do it again…YEA!
      Love ya’ll, Danna

  • allenclabo 12:54 am on May 19, 2015 Permalink | Reply  

    Duke 2015 Day 6 (=Monday, May 18) 

    Today has been a bit of a roller coaster. We suspected that it might be busy, but, boy, we had no idea!

    After the standard beginning of the day with blood draws at 5:00 a.m., vital signs and weight at 6:30 or so, and a new day shift nurse at 7:00, the day was off and running. Right away, we were told to expect that Tami would go “pretty soon” for a couple of transplant-related tests. In the meantime, the first visit was actually from a Duke volunteer who had received a heart transplant only 16 months ago. You would have never known that he had had any heart trouble, especially not 0a transplant so recently. His job is to go around the floor encouraging those who are needing or who have just received a transplant. As he was talking to us, the entourage of doctors came in – the attending cardiologist, the normal fellow (doing all the real work as far as we can tell in the past week), the floor resident, the transplant coordinator, a pharmacist, and another resident. (There may have been one or two more.) As they finished up (more on that later), there was a patient services rep, a medical psychologist (more on him later), and two transport nurses. Off for a mammogram and a pulmonary function test on an almost 2 hour tour all the way to the new clinic building. Back in time to see the social worker (does Tami have supportive family and friends to help with post-transplant care? :-)). Then the medical psychologist (think sitcom psychiatrist a la Frasier or Bob Newhart and you have the right picture…). Does Tami have bouts of depression that last days or weeks? How often does she completely forget to take her medicine? Aside, I know, sadly, that there are many people who do not have stable families, who could not handle the daily regimen of drugs that follow transplant, who have no social support network, who would be overwhelmed by the stress of waiting for a transplant, whose financial situation is so fragile that the long term cost of care would be overwhelming, so I recognize the blessing of having these things, and I don’t discount at all the medical value of assuring that transplant candidates increase their viability by having these things as a part of their pre- and post-transplant care. So we are blessed that both of these members of the transplant team said that clearly Tami had considered the magnitude and difficulty of the transplant process and that she obviously is very loved by many family and friends.

    Oh, yeah, back to the doctors. Not really any news, just that it seems pretty likely that we will get to go home tomorrow. (Whaaaa?) Yep, they were serious. A few interviews still with the coordinator and financial services (and maybe that’s all…). Then the transplant committee meets on Thursday and we should hear by Friday whether Tami has been approved to go onto the heart transplant list.

    But back to the parade. Cal and Renee Orr came to visit for the afternoon. We are blessed, again, by more friends who make the long trip to spend time and encourage us. They arrived just as the psychologist left. And, just as they got settled in to visit, the representative from the infusion/home health company came by to tell us a little about the pump Tami will have and how it works.

    I think this has been the biggest challenge for us this week. Not even the shock of having to unexpectedly consider the transplant work up and all that that means has bothered us as much as the challenge of having a 24/7 IV infusion pump and PICC line to manage. Keep praying for us as we figure out how to adapt and adjust to what can and can’t be done and how to maneuver this new season of life. So the infusion pump rep showed us the pump, the carrying case, how to feed the new iv line into the pump, how to push some buttons to operate the pump, how often the pump and iv bag must be changed and roughly how that’s done. We will get another, more detailed teaching session about all of this tomorrow (that’s the other person that’s coming), but let’s just say that we are more than a little overwhelmed by the whole process.

    Oh, and lest we had nothing else to do, we got a call from the nurse in charge of the clinical trial that Tami has been a part of, and she came by to collect the remaining pills, etc. (Have I mentioned before that when she started the new IV med, that Tami was disqualified from continuing the trial drug?) The nurse ended up coming back much later to drop off some end-of-trial blood work to be drawn in the morning. Hopefully, she will bring the specific research trial-approved EKG machine in the morning, as well, and also get the lead doctor over this drug trial to check Tami in the morning before we leave. (I guess that’s even two more people, so you can see that tomorrow will be a crazy chaotic day, too!)

    Oh, somehow we had a great, long visit with Cal and Renee, too! Tami even got to leave the floor, and we all had dinner in the outdoor courtyard together.

    We are exhausted, and since the morning starts by 4:30 or 5:00 and it’s 1:00 now, I need to go to bed!

    Thank you all for continuing to pray for us in every way!!

     
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