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  • 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!!

     
  • allenclabo 11:36 pm on May 17, 2015 Permalink | Reply  

    Duke 2015 Day 5 #2 

    I know that some of you anticipate seeing the blog every day (or night), so I figured I’d at least give another quick update.

    Really nothing to report today. No tests, procedures, etc. The doctor did say (as I mentioned this morning) that Tami’s fluid output is still good and her kidney function seems to be significantly improved, probably because the new medicine has already begun improving the heart’s pumping efficiency. As I mentioned before, tomorrow should be a parade of various people from the transplant team: transplant coordinator, social worker, psychologist (I said psychiatrist before, but that’s probably not correct now that I think about it :-)), financial counselor, eventually a transplant surgeon, etc. No doubt a few more blood tests and whatever procedures we have forgotten from last time, but nothing dramatic, we don’t think.

    The big prayer request is still for the call tomorrow to our insurance to determine whether they are going to require another heart cath to demonstrate that the new medicine is effective (and, therefore, worth having them pay for!). Pray for God’s work to be seen, regardless of the outcome, that we would be at peace, regardless of the outcome, and that we will glorify God in either not having another heart cath or in waiting here another week watching for God’s hand and His work and His plan and to do another heart cath.

    We did have visitors again today, Becky Ulrich and her daughter, Karis. Becky and her husband, Mark, were friends of ours in Auburn, and they live near here now. Sadly, two of the last three times we have seen her have been here in the hospital. We should change that… Nonetheless, they are good friends and prayer warriors, and we were blessed by visiting with them today.

    That’s it. Maybe I’ll be asleep before 12:00 tonight! :-) Thanks as always for your prayers, calls, etc.

     
  • allenclabo 12:28 pm on May 17, 2015 Permalink | Reply  

    Duke 2015 Day 5 (=Sunday, May 17) 

    Just a quick update and a prayer concern this morning…

    First, Tami does seem to be getting better. Her fluid output is still exceeding her input by a pretty good amount, and her kidney function has improved significantly in the two days on the milrinone. The drs say that’s probably partly from the fluid load being down but also partly from the milrinone helping her heart to pump better and, as they said, “the kidneys are happier that they are getting more blood.” (Somehow I envision a picture here of a smiling kidney, but I don’t think I’ll waste any time try to find that :-))

    The prayer concern is this – try to connect the complicated dots… – The milrinone is very expensive, so insurance companies like to know that it is actually helping before they continue to pay for it. To be sure it’s working, they would need to have another heart cath and see that the pressures are actually decreasing and the pumping efficiency output is increasing. It’s much easier, as we learned this week, to have the cath through the arm instead of the groin. But, Tami now has the PICC line in the major right arm vein where the cath would go. Her pacemaker/defibrillator is on the left side and the wires to the heart run through the main vein from the left arm and left side of the body into the heart, so they can’t use her left arm, either. Well, that means they would have to do the cath through the main vein in the groin. But, to do it through the groin, her INR has to be low (because there’s a greater risk for bleeding from that larger vein), and it takes about 3 days for the INR to come down before the cath and about 3 days to get it back up to the normal therapeutic level after the cath, so that option would add at least 6 days to our stay (which is already working on being at least 8 or 9 now!). So, needless to say, that is a terrible (no, TERRIBLE) option. Ok, quick summary – insurance company might want another heart cath to be sure med is working, can’t use arms for that any more, using groin makes the hospital stay ridiculously long! (Now the good news is that we have already been told once that we have good insurance, and there was an earlier suggestion that we might not need another cath, but we don’t think the question has been officially asked or answered yet.)

    So, you need to pray for Blue Cross/Blue Shield of SC and the representative there that talks to the representative from Duke tomorrow (and pray for the Duke representative who calls tomorrow) that BC/BS-SC will continue to approve Tami’s use of milrinone and that they will NOT require another heart cath. That’s the request – no heart cath needed. Pray.

    Thanks. More probably later! :-)

     
    • Linda Navorska 3:53 pm on May 17, 2015 Permalink | Reply

      Thank you for the detailed information and prayer requests. You have been in my thoughts and prayers all week.
      This all makes Alexander’s message on Day 1 even more relevant.

  • allenclabo 12:35 am on May 17, 2015 Permalink | Reply  

    Duke 2015 Day 4 

    Tami just told me that she looks forward to reading the blog, so I guess I’d better get to it!

    Saturday is normally a day off for most people, but not Duke University hospital. Since we are in the middle of all that is involved with the transplant work-up, there were several things for Tami to do.

    But, first, I realized after last night’s blog that I haven’t made it clear that we are working through 3 sort of unrelated processes while we are here. First, they are trying to get rid of as much fluid as they possibly can. That means that Tami is getting two IV bags of diuretic per day – they had wanted to do 3 per day, but Tami’s output has exceeded her input each day, so that (along with a few scheduling and other technical difficulties) has kept them happy with only 2.

    Second, Tami is doing a whole looooooong list of things to attempt to qualify for the heart transplant list – heart cath (already did, so check), echocardiogram (already did, so check), lots of blood draws (14 the first group and maybe 5 more this morning), and it keeps going – more on that in a bit – stay tuned, we’re likely to have a parade of visitors and procedures and what-not on Monday.

    And, third, Tami is starting a new medicine – it’s called milrinone, and it’s an IV med that Tami will take by continuous IV infusion for a while. We learned today that they call this a “bridge” – the bridge from not doing so well on at-home diuretics (now) to…transplant. That third process will include, before we go home, a lot of training about the IV infusion pump that Tami will carry around, about keeping the PICC  line clean, etc. For now, they are watching for any sign of heart arrhythmias, the only serious side effect and pretty much the only thing that would prevent Tami from continuing on it. So far, no sign of anything, so that’s good! We also learned today (it’s a lot of getting one bit today and another bit tomorrow and connecting the dots to figure out the whole story…) that the “bridge” is probably a pretty short bridge – patients stay on milrinone weeks or months – in an exceptional case maybe a couple of years at the most – so after that short “bridge” is, as the doctor said today, the “life-changing event” of a transplant. We hadn’t really ever considered that from qualification to transplant was that short a time, but it seems like that maybe that’s the case.

    Ok, for today, Tami was told that she needed to be NPO for a gall bladder ultrasound reasonably early this morning. In the mean time, though she was told that she would do a lung scan first, then be taken for the gall bladder scan. So, with a few transportation delays, she was off. Lung scan, no problem. Problem with gall bladder scan is she doesn’t have a gall bladder – it was surgically removed, “kicked my butt” the surgeon said at the time since it was pretty inflamed and a good bit complicated to remove – so the ultrasound nurse realized that the insurance would balk at paying for an ultrasound of an organ they paid to remove…hmmm, smart thinking…again a delay while a dr rewrites an order for a “liver” scan that can be slightly off-center and verify that the non-existent gall bladder hasn’t regrown or anything…ok, transplant work-up check box checked… Followed by yet another ultrasound of her carotid arteries (in the neck). Tami was told that she has “beautiful,” “model” carotid arteries, ones that the nurse wished she could use for teaching students :-) Check and check. So, this “quick” 2 (now 3) procedures plus plus plus takes 2.5 hours – and Tami found out that she didn’t have to be NPO after all. Grrr… Oh, and a nutritionist came by to make sure Tami knew that with a new heart she should still follow a heart-healthy diet…

    Well, that was the end of the medical part of today. Well, a new bag of milrinone tonight and another bag of Lasix and vital signs and stuff they have to do, but nothing else really moving the story forward. And as far as we know, the same for tomorrow – nothing new, just continuing milrinone and Lasix and hanging out until Monday.

    But the big news today was the party in Tami’s room! We had visitors all day – Richard and Crystal Fields were here not long after 9 this morning. By mid-afternoon, James and Julie Munn and Katelyn and Madison arrived to visit. And another hour or so later, Kyle and Tiffany Matthews and Vivi came also! So it was quite the crowd all afternoon! I missed the Munns and Matthews since I went home to Florence and back to restock clothes, etc., for us for the next 4 or 5 days or so, but did get to visit with the Fields while Tami was having procedures and then for a minute when I got back from Florence. (Yes, they stayed allllllll day since they didn’t want Tami to be alone while I was gone! :-))

    We are so blessed to have so many good friends who are willing to make the long drive from Florence to Durham!! We remember that one of our official appointments during the transplant qualification is with a psychiatrist (no, I’m not kidding) – one of the questions last time was whether Tami had supportive family and friends nearby. We kind of overwhelmed him last time with the numbers of phone calls, visitors, etc. we get every time Tami is up here, even though it’s not close, and with the numbers of email recipients and blog page readers (thank you :-)) about our updates. Our friends today reminded us of that blessing that overwhelms us with gratitude each day too.

    Good night! Thanks for reading and, more importantly, for your continued prayers on our behalf.

     
    • kathy 10:34 am on May 17, 2015 Permalink | Reply

      Allen and Tami, thank you for all the information about what is happening in Durham. Your faces have come across my mind so many times over the last few days which reminded me to pray for both of you. When a spouse is in such medical situations both are affected. I am praying for both to know God’s grace mercy, and strength. You both have touched so many people with your love and this new chapter will be used to touch all of us and so many more. I know God’s grace is sufficient for all your needs. Love you both and in prayer for God’s strength. Kathy

    • Marcia Knight 10:54 am on May 17, 2015 Permalink | Reply

      Thank you for your daily blog. I use it to direct my prayers. What a blessing to have loyal friends who care for you like the Fields, Munns, and Matthews. I know you have made an impact on my family. To God be the glory! My sister will be at Duke Tuesday to see Dr. Thomas. Don’t be surprised if she pops in to say hello.

    • Gail Garrison 8:32 pm on May 17, 2015 Permalink | Reply

      Tami – I just want you to know that Blaine is rallying all kinds of prayer support for you at church. He told both Woody and I that he needed us to pray for you because you were going to get a new heart. I asked him to try and get someone to help him send you a message on FB so he could talk to you himself. He loves Miss Tami!

    • Sterling Zalewski 10:29 am on May 18, 2015 Permalink | Reply

      Jeff and I and family send our thoughts and prayers with you and your family. God always has a plan. Your faith and strength in Him will guide you through. Tami, love you and can`t wait to see your smiling, sweet face! Okay, your culinary blessings are always somewhere in there too….thanks Alan for keeping us all posted.

  • allenclabo 11:50 pm on May 15, 2015 Permalink | Reply  

    Duke 2015 Day 3 

    As the morning began today, we were just waiting to hear about the results from Tami’s heart cath yesterday, find out how much Tami’s heart function had decreased, and find out what to do next to manage the fluid retention and other symptoms. Well, hang on….that’s not the way it turned out….

    Last night, the floor resident had tried to tell us that the results weren’t good (not surprising, really) and that we needed to start thinking, um, down the road about, um, advanced treatments, and, um,…she didn’t want to say “transplant.” She was relieved that we had heard that before, so she left it there.

    Well, this morning, when the cardiologist came in, he said the numbers they measured were high (bad) and they had decided that we needed to consider “advanced therapy” because Tami was “refractory to treatment.” Yeah, we were confused, too. (Bedside manner, C-) Then he said, you know, we need to be getting you on the transplant list. Loooooooong pause. Tami didn’t like hearing that with no lead in or advance notice but managed to say, “you mean right now?” Well, long story, lots of questions, some more tears later, the answer was yes, we need to start doing the transplant workup.

    Oh, and if that’s not enough, Tami needs to start a new IV medicine that she will have to continue to do by IV infusion after we get home. Maybe more on that later.

    Of course, we have been down this road before. If you’ve been following the journey and/or the blog very long, you know that we did the heart transplant workup in October-November 2008. (If you didn’t know this, scroll down the blog through all of the older posts to the very beginning and start reading there if you’d like :-)) And, yes, (SPOILER ALERT IF YOU ARE GOING BACK TO READ FROM THE BEGINNING…), we were disappointed that Tami couldn’t get a heart transplant then! So, despite the shock of not having considered that we would be there again today, we have already once been at peace with having a heart transplant! So, fast forward a few minutes of wrapping our minds around the idea again, and we told the doctors that we would think about whether we should go ahead with starting the transplant workup now, while we are already here.

    But first, we had told the doctor this morning that, if it was possible, we would really, really, really like to talk to the two cardiologists that Tami has been seeing for the past 8 and 9 years. Well one was on rounds and one they didn’t even know if he was in town at all, but they promised to text them and ask them to come by if they could. Well, it wasn’t too long until one – then the other! – came into the room – yes, both of them at the same time! – Well, that is definitely a God thing!! We really wanted to draw on the long-term relationships that we have with these doctors to have them explain and discuss the results, meaning, and plan with us. So after a longer discussion – you know how you can have a long, hard discussion with a friend and ask questions, knowing that that will give the best result and the relationship won’t suffer? – well, after that discussion and asking all the questions swirling in our minds, we were a lot more at peace with going ahead with the process.

    Another thing we have learned about Duke is that when things get rolling, a lot of things can happen fast! So within another hour, the resident had called the transplant coordinator, someone had called our insurance, the coordinator had called Tami, and the resident had placed a whole bunch of orders for blood work, other labs, etc.

    That was about 1:00 this afternoon. In the meantime, Tami has had 14 tubes of blood drawn, a PICC line inserted for the new IV med, another IV bag of Lasix, the first dose of the new med (still going), continuation of the IV of heparin (another IV med that keeps the blood “thin” – ok, “anti-coagulated,” it keeps it from clotting easily :-) – until the INR gets high enough from her normal oral anticoagulant), an x-ray (to confirm the placement of the PICC line, also killing the second bird of being needed for the transplant workup), and a CT scan. We thought she might get a lung scan, but I guess the day just got away from us :-)

    Interestingly, the biggest hurdle today after the initial shock was the PICC line and new IV med. For definition purposes, PICC means peripherally inserted central catheter. Essentially, it’s an IV line that can stay in place for weeks or months to make it easy to have regular doses of antibiotics or heart meds or chemotherapy or whatever. Along with that, apparently Tami will have a little pump that she will carry around to infuse this new drug continuously for some unknown time into the future. Tami doesn’t like and isn’t yet comfortable with the idea of having a permanent IV and continuous infusion of a drug. So, maybe that’s the first thing to begin praying about. Tami says that she thinks that that will make her “look sick.” No response, just to pray for acceptance and peace.

    It’s late and we need to sleep since we expect a blood draw around 1:30 and we know the day starts by 5 or 5:30 most days! :-)

    Thanks for your comments, calls, texts, and prayers!!

     
    • Janice 4:35 am on May 16, 2015 Permalink | Reply

      Tami, just a quick note to let you know that the Estes clan is following your journey and praying fervently for you all the way in Florida! You (& your famy) are so special to us! We’ll continue to lift you up. MUCH love to you, Allen, & Clabo!

    • lala 8:04 am on May 16, 2015 Permalink | Reply

      praying and trusting

    • Gail Garrison 10:13 am on May 16, 2015 Permalink | Reply

      Prayers going up from the Garrison family. I know this is so unexpected and you are very anxious. I think Tami will look sexy with a pump and PICC line. Taking care of business! Allen, prayers for you and Alexander to hang in there. Our God can do all things.

    • Terry and Allicyn 10:34 am on May 16, 2015 Permalink | Reply

      Tami and Alan…

      We are praying for peace right now!
      Psalm 41:3
      The LORD sustains them on their sickbed and restores them from their bed of illness.

    • Tiffany Matthews 10:34 am on May 16, 2015 Permalink | Reply

      We believe in miracles! God performs them daily! Praying sweet lady!

    • Toni Harris 11:25 am on May 16, 2015 Permalink | Reply

      Tami and Allen, it is encouraging, faith inspiring and heartwarming to see your faith and trust in our mighty God …. Even when His plan does not match our desires. He is good and faithful to us even when the prayers from our hearts are in conflict with His ultimate purposes. Jesus prayed that His Father would not require the weight of all our sins to be placed on Him. Yet, in God’s design it was necessary so that you and I can have free and direct access to our Heavenly Father. Tears immediately stung my eyes when I read the post. Jesus is holding you close and my prayer is that you feel Him in tangible ways. I’m so sorry you have to face this frightening procedure. You have my love and prayers. Working in oncology, I insert PICC lines and many of our patients have them. They are pretty easy to hide even connected to a pump. It just requires the right clothes. So I see a shopping trip in your future! 😊

    • campbellscorner2014 11:33 am on May 16, 2015 Permalink | Reply

      Journeys can be frustrating and exhausting and journeys are usually lengthy with unexpected twists and turns. I can imagine that missionaries must experience these same types of things on a different level. Though we are not close friends, I have followed this journey of yours for years and have been faithful to pray for y’all, as I will continue to do. I believe that Tami will adjust to whatever she needs to, because her life is all about giving glory to God and being there for you(Allen), and for Alexander…for family and friends. Your lives come in contact with people that you never would in any other way….sometimes to be a blessing to them and sometimes for you to let them bless you. That second part can be more difficult for some of us because we want to be the giver of blessings rather than being a receiver of blessings. Thank you for the openness with which that you share…it really helps in how to pray for y’all. >

    • Jo Ann Warr 6:22 pm on May 16, 2015 Permalink | Reply

      I am praying for you guys. Love you!!

    • caroline (PEGGY) Tisdale 9:42 pm on May 16, 2015 Permalink | Reply

      Tami you are in our PRAYERS. WE walked that road at Duke a few years back when we were waiting on a double lung transplant for our son JOEY. He has CF. RECD THEM THE DAY AFTER HIS 28TH birthday. We had to rent a place near the Hospital after he was accepted. His mom,Stady there. Jimmy and I worked thru the week and travel to Duke on weekends. Unless there was a set back with his health. The family was there for almost a year. I’m. Not telling You this to upset you,but to let you guys know we understand some of what you are going through I also when through a kidney. Transplant. at MUSC with my sister. We are praying for you.

    • Donna von Rajcs 11:22 am on May 17, 2015 Permalink | Reply

      Tami~ You are so loved! The von Rajcs family is following this blog and want you to know how much we love you all. God will give you the strength to get through this one and you KNOW in this journey, He will be glorified! He has been your provider for your entire life …and continue to trust that he has better days ahead for you all!

  • allenclabo 10:40 pm on May 14, 2015 Permalink | Reply  

    Duke 2015 Day 2 #2 

    Pretty busy day today for Tami. As I noted earlier (scroll down if you missed the earlier update today and want to catch up…) Tami lost about 4 pounds of fluid overnight last night, so that was progress in the right direction. So we figured we were just waiting for the INR to get low enough for the heart cath that they want. So, we were somewhat surprised – but ultimately pleased – when the doctor mentioned that they can do a heart cath through the arm instead of through the groin, and that that method doesn’t require the INR to be low at all! So they can do the procedure sooner, there is less risk of bleeding, the recovery after the procedure is faster, and there is no need to wait days for the INR to come back up before going home (since it didn’t have to be down in the first place!)

    So, in a whirlwind grand tour of the hospital today, Tami had an EKG in the room, an x-ray, a heart cath, and an echocardiogram! Needless to say, she didn’t get a nap today that she needed after about 2 hours’ sleep last night.

    Tami also got a surprise visit today from two special friends from Florence, Debbie Quick and Tonya Lee. Special thanks to them for making the long trip and visiting for a while tis afternoon! :-)

    We didn’t get any real results from any of those procedures today. The floor resident mentioned that, based on the cath results, that the left side of Tami’s heart is probably weaker (that’s already the weaker side of her heart) and that the right side of the heart appears to perhaps be a little stronger than it was the last time she had a cath in January 2012. We will know a lot more, including what else they want to do (procedures, meds) when we see the cardiologist tomorrow morning.

    So we are going to try to get more sleep tonight that last night, even though Tami will get another bag of IV Lasix around 11 or 12 or so –

    Thanks for all of the calls, texts, comments, and, especially, your prayers. More updates tomorrow as we know more. Good night!

     
  • allenclabo 12:04 pm on May 14, 2015 Permalink | Reply  

    Duke 2015 Day 2 

    Quick update from this morning…Of course we got very little sleep last night. The IV of Lasix finished about 1:15 (yep, that’s a.m….), and for the next 5 hours, Tami was up once or twice an hour getting rid of fluid. So she didn’t get to sleep until about 3:30 and was up by 5:15 with blood draws, weight check, vital signs, EKG, etc., etc. I was sleeping some (probably poorly) and. obviously, regularly disturbed, but for a hospital chair bed, I can’t complain about sleeping from about 1:30 to about 7:15 off and on.
    We didn’t see the doctor until about 10:30, but, as normal, we were very impressed. The doctor said right away that Tami was not a normal case :-) However, they were all very interested in her case and in being aggressive to understand and to treat the current symptoms.
    So, the interesting news is that they can do a heart cath through the arm instead of through the groin. One of the doctors who pioneered that technique is in the cath lab today, so there is a good chance that Tami will have the heart cath done sometime today. This procedure also doesn’t require that the INR be low, so whatever it is today is fine. So it can be done sooner, with smaller risk, with quicker recovery afterwards, and with sooner discharge (no waiting for INR to come back to therapeutic), so that’s all good.
    She’s off to an x-ray now, waiting for an echo later, then, apparently the cath sometime, too.
    I’ll post more as soon as we know more.

     
  • allenclabo 11:39 am on May 14, 2015 Permalink | Reply  

    Duke 2015 Day 2
    Quick update from this morning…Of course we got very little sleep last night. The IV of Lasix finished about 1:15 (yep, that’s a.m….), and for the next 5 hours, Tami was up once or twice an hour getting rid of fluid. So she didn’t get to sleep until about 3:30 and was up by 5:15 with blood draws, weight check, vital signs, EKG, etc., etc. I was sleeping some (probably poorly) and. obviously, regularly disturbed, but for a hospital chair bed, I can’t complain about sleeping from about 1:30 to about 7:15 off and on.
    We didn’t see the doctor until about 10:30, but, as normal, we were very impressed. The doctor said right away that Tami was not a normal case :-) However, they were all very interested in her case and in being aggressive to understand and to treat the current symptoms.
    So, the interesting news is that they can do a heart cath through the arm instead of through the groin. One of the doctors who pioneered that technique is in the cath lab today, so there is a good chance that Tami will have the heart cath done sometime today. This procedure also doesn’t require that the INR be low, so whatever it is today is fine. So it can be done sooner, with smaller risk, with quicker recovery afterwards, and with sooner discharge (no waiting for INR to come back to therapeutic), so that’s all good.
    She’s off to an x-ray now, waiting for an echo later, then, apparently the cath sometime, too.
    I’ll post more as soon as we know more.

     
  • allenclabo 12:03 am on May 14, 2015 Permalink | Reply  

    Duke 2015 

    Well, we didn’t plan on spending a few (or more) days in the hospital at Duke, but here we are.

    Tami has for the last 4 or 5 weeks been having a lot of shortness of breath and has noticed a significant weight gain. Those two things together are symptoms of a flare-up (“exacerbation” the resident on the floor called it tonight) of Tami’s congestive heart failure that causes fluid retention (kidneys not doing their job getting rid of fluid since the heart isn’t pumping enough blood and the kidneys are the most sensitive to that). So, after a clinic visit up here last Friday for an IV push of 100 mg of Lasix (a diuretic, to get rid of fluid), the fluid (and symptoms) returned immediately, and Tami’s transplant cardiologist wanted to see her up here today. So, back we came, knowing that at least she’d get more Lasix but that there was the possibility that he’d want to keep her for a few days. In short, he said that Tami never complains of symptoms or of feeling badly (even though her heart condition is clinically pretty ugly – my words, not his), so when she does say she’s feeling bad (like she has been for the past few weeks) and when her normal, daily, aggressive diuretic regimen isn’t working, he listens and wants to do something significant. He also said that he has just been waiting (for a long time, actually), knowing that Tami’s heart was likely to either start getting worse or to at least start having more symptoms at some point. So, he “voted” to have Tami stay for a couple of days of IV Lasix and then (while we are here and since our insurance deductible and out-of-pocket maximum are taken care of now – my editorial again, sorry) for a right heart catheterization, hopefully on Friday.

    Long waiting story short, we finally got a room about 8 tonight. We have a very sweet nurse and a typically-awkward floor resident. (I have to say here that it has been entertaining today watching both the cardiology resident in the clinic and the floor resident tonight be completely bewildered by both Tami’s medical complexity and her ease and competence with her own medical condition and care. She also had the cardiology fellow on call quickly admit “You know the drill. Tell me what we are going to do for you” – the standard admission that Dr. Tami is really in charge :-))

    OK, so going on midnight here, we are still waiting on normal evening meds to come from the pharmacy and the first IV bag of Lasix. They are doing NPO (no food intake) after midnight on the outside chance that her INR (blood “thinner” level…we’ll chase that incorrect, yet commonly spoken, medical terminology another time…) is low enough to do the heart cath tomorrow (although that seems very unlikely to us). Oh, and remember she got 100 mg of Lasix last Friday? Tonight’s bag will be 120 mg, with another 120 mg expected tomorrow. So we will be up most of the night…And since they draw “morning” labs about 4 a.m., it will be a short and not very restful night. All part of the Duke hospital experience! :-)

    We’ll post more tomorrow as we know more! Thanks for all of your prayers, texts, Facebook comments, actual telephone calls, etc.

     
  • 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.

     

     

     
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