tag:blogger.com,1999:blog-11029725618344592702023-11-16T03:42:09.051-07:00Broken HeartOur family's journey living with heart failure and transplant.Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.comBlogger120125tag:blogger.com,1999:blog-1102972561834459270.post-70294453342385682042017-12-12T12:10:00.001-07:002017-12-12T12:10:03.576-07:00Day 12<p dir="ltr">Got good news yesterday, which was his ejection fraction improving to a normal range.  He was at 30% on admission 12 days ago.  Now at 58% so woot!</p>
<p dir="ltr">Had a nice visit last night with the girls and I.  I was on call all weekend so was pretty tired from a 3am delivery but we all laughed a lot.    It was good :)</p>
<p dir="ltr">Today, we are just waiting to hear where he's at with antibody counts.  They said plan is dependent on those results.  If he needs to have plasmaphoresis today, then sounds like discharge would be tomorrow.  If he doesn't need it, then discharge might be today!  He's very ready to go home and I think will be disappointed if its not today.  I told him to prepare for the worse and hope for the best 😋  Unfortunately, creatinine increased to 2.0.  Wrong direction!  Blood pressure control is still an issue as well.....is kidney function affecting blood pressure or vice versa?  Chicken or the egg?  They are increasing meds to try and control blood pressure but doesn't seem to be helping a lot.  He was in 150s over 108 this morning.  Yuck.  He's still got a good bit of swelling as well, so retaining fluid still but weight is dropping very slowly every day, which is good.....He's trying to get rid of fluid.</p>
<p dir="ltr">We will keep everyone posted when we get some answers.</p>
<p dir="ltr">I wanted to thank everyone again for all the help, love, and support!  You are all so wonderful!</p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-37912434040963040642017-12-10T10:42:00.001-07:002017-12-10T10:44:00.204-07:00On the 10th Day of Carlos' Hospital Stay....<p dir="ltr">Carlos got moved to 4w last night finally.   It's a newer room and very large, which is nice.  The light was broken so they couldn't turn it off.   Finally got someone to fix it in the middle night.   Unfortunately he got very little rest due to this so he's tired today.   They had a full house so took awhile to get a bed.   </p>
<p dir="ltr">Today is a "quiet day".  Just watching vitals,  tweaking meds,  etc.  We don't know if he's doing plasmaphoresis today or not.   His blood pressure has been creeping up so they are adjusting meds.   His creatinine remains at 1.8 so they aren't liking that.   We are hoping to see that come down.   There are still plans for echo tomorrow,  so hoping to see improvement in his heart function.   </p>
<p dir="ltr">I seriously doubt discharge will happen tomorrow unfortunately.   We weren't really getting hopes up cause we know how this works.   </p>
<p dir="ltr">The girls are competing together in a sand tournament today.   That starts at 11am so we will use periscope to watch them play.   Robin is covering me this morning so i could come visit.   Dr Guzman covered me yesterday for a bit.  So its been super nice to come visit even while I'm on call.   I'm off tomorrow afternoon so will head here to hang out the rest of the day.   I told Carlos I'm kinda missing him at home.  Just a little.   Lol!  My mom is doing a great job being the other parent but not quite the same :)</p>
<p dir="ltr">We continue to receive meals,  love, and support.  If you want to call Carlos or text him, let me know and I'll share his number. Thank you! </p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-22732749849846822202017-12-07T11:56:00.001-07:002017-12-07T11:56:12.058-07:00Day 7 - ICU Fatigue<p dir="ltr">He had a rough night last with minimal sleep. They gave him a big dose of Lasix after we left so he was up all night peeing off fluid. They said he put out 3 liters! So he's exhausted and crabby today. </p>
<p dir="ltr">He's getting lots of oral meds to control <u>blood</u> pressure, etc. They did turn off the Nipride so yay for that. That had to go before he can exit the ICU. They turned done the milrinone again so they are trying to get rid of that. There's a small possibility he could get moved out of ICU tonight but the nurse said don't bank on it. His blood sugars continue to improve so getting less and less insulin. He's still not therapeutic on his tacrolimus but the plasmaphoresis may be filtering out some of the meds along with his fast metabolism of it. Still have the goal of discharge by the 15th. We shall see.</p>
<p dir="ltr">I had a really rough day yesterday. Going to the office was a bad idea. By last night, I was exhausted, anxious, and stressed. Definitely flaring. I'm so appreciative of all the help and support from everyone! </p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-49485135767445376532017-12-05T13:02:00.001-07:002017-12-05T13:02:12.938-07:00Buh-bye Pump<p dir="ltr">Yay!  The pump is out along with the catheter they were using for plasmaphoresis.  He's doing well thus far without it.   He's maintaining his cardiac output with the help of meds only.   They are trying to wean off one of the meds, switching to oral,  so he can transfer to 4w.  Hoping that will happen tomorrow.   He has to lie flat for 8hrs after removal of pump then hopefully can get up and moving around a little.   He's been quite the trooper given he's been in this position for 5 days now, but getting a little crabby now. Says it feels like he's back at day 1.....sore, tired, uncomfortable. </p>
<p dir="ltr">He's doing another dose of thymoglobulin (immunosuppressive drug) later today so they pre-medicate with benadryl.   So much for sleeping tonight!   He's been snoozing the last couple hours from the light sedation for the pump removal.</p>
<p dir="ltr">They placed a PICC line but placement isn't optimal for some of what they are needing so he has to keep the catheter in his neck - I guess the PICC line won't work for the plasmaphoresis tomorrow.   Boo.</p>
<p dir="ltr">I'm going to play with the periscope app next so that maybe he can watch the girls practice a little and see Libby's band performance Thursday night.   </p>
<p dir="ltr">That's about it for now!   Thank you again for all your support.   Had meals the last two nights from one of Libby's teammates from last year and one of the fab doulas I know.  We have received gift cards from two other families so help fill in blanks... big help for this weekend. Daja and Libby are doing a sand tournament Sunday so I know they'll be hungry afterwards! I'm heading back to work tomorrow so things are going to be more complex but my mom is super helpful. I'll probably take a couple days off once he's discharged to help him get settled in.</p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-71645062825575510942017-12-05T12:18:00.001-07:002017-12-05T12:18:43.821-07:00Day 4 in the Batcave<p dir="ltr">Carlos continues to do well.   They are starting his second plasmaphoresis right now.   This will probably be the last as well.   The plan is to pull the catheter for that and the balloon pump at the same time around 6pm.  Which means he can get up and move around!  And hopefully means he can move out of the Bat cave tomorrow! </p>
<p dir="ltr">His creatinine continues to decrease,  now at 1.8.  Yay!  Liver enzymes are normal.   Yay!  His blood pressure is now starting to run high,  which is a good thing.   Means his heart is working more.   They did echo this morning but haven't heard about those results. </p>
<p dir="ltr">He continues to be in good spirits.  We appreciate the love,  support, meals, and visits!   All 3 kids are coming to visit shortly. <br><br><br></p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-29656651950618378492017-12-03T13:41:00.001-07:002017-12-03T13:41:33.146-07:00Going in the Right Direction<p dir="ltr">Carlos had a great night. He got some rest and his numbers started to improve a good bit. Yesterday after posting, I ran into Dr Steidley, and he was very positive. Nice to start seeing that reflected in labs and vitals. The girls and I came to visit last night after Libby's sand tournament. Carlos was quite chatty, lots of volleyball talk (big surprise) but I made them all shut up because I could see he was getting fatigued. His cardiac output index was dropping. Endocrinology visited and he got his plasmaphoresis done during the afternoon. </p>
<p dir="ltr">Today they have started weaning down the balloon pump. It now only pumps every other beat. He's tolerating that well so far. The hope is to have it shut off by tomorrow so he can get up and start moving around a little more, which will lead to getting out of the bat cave and on to 4w. His labs are improving as well. His creatinine is down to 2.3 so hoping to see that continue trending downward. His liver enzymes have decreased as well. Yay! They are continuing high dose steroids but that well skew down a bit tomorrow and he continues to have milnirone, which helps the heart to pump more effectively. Will probably be a few days on that once balloon pump is gone. I think he's going to have echo tomorrow to look at his heart function. No one knows whether function will improve or not, that remains to be seen. He will also have his second round of plasmaphoresis. </p>
<p dir="ltr">His type of rejection is the 'good kind' I guess. Comes on fast but able to get rid of it fast. I guess the other type tends to smolder and never fully resolve.</p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-54774580076895476012017-12-02T10:56:00.001-07:002017-12-02T11:20:46.418-07:00Blog Revival and Update<p dir="ltr">I haven't posted in a long time cause there really wasn't anything to blog about.  Carlos had been doing really well aside from some hiccups here and there, like diabetes (common 'side effect' of transplant).  The kids have been getting their yearly cardiac screenings without incident.   Life goes on and you start to forget about how bad things were.  You start to become complacent.   </p>
<p dir="ltr">Carlos had returned to work back in October, working 40 hours a week in a physically demanding job.   Disability had determined he was capable and no longer met criteria for disability.   Fair enough.   Unfortunately, not always great at self care and speaking up when not feeling well, he became very tired.   We all assumed it was just adjusting to working again and the physicalness of the job (hello 80k steps on the fitbit!).  I figured he would get in better shape and start losing some weight (he did initially).  He was enjoying the work as well.   But the tiredness didn't go away.   I thought,  well he's got diabetes and is overweight so it is what it is.   Then he was so tired,  that even on the weekends with no work he wasn't moving much from the recliner.   I even thought recently,  is this working thing really worth it but that's the money to pay for volleyball.   And he would be off all summer (he works at ASU so only works during the regular school year).</p>
<p dir="ltr">Wednesday morning,  Carlos texted me and said he was going home after only working about 90 minutes because he wasn't feeling well.   He said he was tired,  experiencing cold sweats,  dizzy, and body aches.  I thought damn, sounds like flu.   Told him to go home, check temp, and let me know.  Surprisingly he had no temp.   I was a little surprised cause he and the kids are dramatic usually.   They get a cold and run high temps!   He rested and seemed to be doing ok as long as he just stayed in bed.   The next day,  he stayed home and rested but was having a but of shortness of breath with exertion, still dizzy when up,  and tired but no fever.   I told him to call the transplant nurse.   Unbeknownst to me,  he has been having trouble earlier in the week with the walk from the parking lot to the dining hall,  having to stop and rest.  The nurse talked to the doc and they wanted him to come in the next day (Friday) for labs and testing.   I started to suspect rejection as I started googling  (lol).  And Mayo must have been thinking the same thing. </p>
<p dir="ltr">Yesterday we spent the day here,  starting with labs then ECG.  No appt with the doc was scheduled so I told him we will call the nurse before we leave because his heart rate wad in the 130s with walking.   Fortunately,  the ECG tech called for us as he had an abnormal heat rhythm.  They wanted us in Dr Scott's office next.   We discovered his BP was low as well.   Meanwhile, I'm using the Mayo app and looking at his labs..... his creatinine (kidney function) was 2.4!  New personal high for him.   Woot.  His liver enzymes were high too.  I knew something was going on and the chance of a weekend getaway at Mayo wad looking very likely.   Dr Scott wanted him to have the echo (which was scheduled for today originally)  and a heart biopsy (one way of checking for rejection).  So yesterday afternoon,  he had that done.   When they took him to the cath lab they said it will be about an hour.   When almost 2 hours had passed,  I knew things weren't going to be good.  Dr Hardaway came to talk to me.  It's never good when they take you to a private consultation room. </p>
<p dir="ltr">Basically, Carlos is <a href="http://https://medlineplus.gov/ency/article/000815.htm">rejecting the heart</a>.   He ended up with a heart cath, an intra-aortic balloon pump was placed to help improve heart function, as well as a catheter in his neck (you can refer back to old blog posts to learn more about these things if you so desire), and a catheter in his groin.   As a result his kidneys and liver are angry.  They anticipate those organs will be ok once they get the rejection under control and get his heart working better.   So we are in the ICU, also fondly known as the batcave.  He's on lots of meds and monitors.  He will start <a href="http://https://www.healthline.com/health/plasmapheresis#purpose"><u>plasmaphoresis</u></a> this afternoon to filter out 'bad' antibodies in his blood and add 'good' ones.  We learned his rejection is grade 3.  The worst is 4.  😕  He has a 50% chance of pulling out of this and then we will have to see if the damage to his heart is permanent.  His ejection fraction was previously 55-60%, normal being 45-75%, and is now 38%.  His old heart was 10% when he was implanted with a LVAD.  However, the sudden change has caused him to be in <a href="http://https://www.mayoclinic.org/diseases-conditions/cardiogenic-shock/symptoms-causes/syc-20366739">cardiogenic shock</a>. </p>
<p dir="ltr">He's in good spirits today. We just have to take it day by day and hope for the best. We will keep things as normal as possible for the kids.... They will do what they are supposed to do - keep getting good grades, go to practice, etc. We do not want to think about what happens if his heart doesn't recover. I cannot cope with that right now. </p>
<p dir="ltr">We appreciate all the love and support we have gotten so quickly. I will update here regularly and share on Facebook. Those that wish to help in some way, Ramona has started a meal train for us, for the next couple weeks, which is hugely helpful. Not having to worry about keeping the kids fed is a big relief. The link is on my Facebook wall. Once we see how things are going, we may extend the dates. I think Carlos will be here at Mayo for a couple weeks at least. Carlos does have his cell phone and has looked at all the wonderful comments on my facebook post. He very much appreciates it! That's it for right now! </p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com1tag:blogger.com,1999:blog-1102972561834459270.post-24904731925759073192014-08-26T20:18:00.001-07:002014-08-26T20:18:37.388-07:00Pediatric Cardiology<div dir="ltr">
Long time no post! Again this is a testament to how boring life is now with Carlos and his health status :) I'm not complaining! </div>
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Carlos started back to school this week and is moving forward with completing his degree, which was interrupted by a downward spiral in his health back in 2011. Only he's changing tracks. I encouraged him to do something he is passionate about. He can't waste this gift of a second chance at life. So he's moving forward with becoming a coach, reffing for volleyball, and becoming a PE instructor. I am so excited for him!</div>
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At a pediatrician appointment last month with Libby, the doctor recommended that the kids be evaluated by a pediatric cardiologist. They are at risk due to a significant family history and concern that this could be hereditary. Carlos' mother died after childbirth, when he was 2 weeks old. She was 19. Her father also died from heart failure in his 50's. Given that the girls are athletes (I'm sure you have heard about athletes dropping dead on the court from undiagnosed heart conditions that no one would have expected) and may also have babies someday, he felt it was especially important to have them screened.</div>
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Both Libby and Daja were seen today. Chris will go next month for his evaluation. The girls had EKGs done and echocardiograms (ultrasound of their hearts). I honestly expected everything to be normal and felt like this was a touch of overkill. Low and behold, they found something. Daja has a small <a href="http://www.mayoclinic.org/diseases-conditions/atrial-septal-defect/basics/definition/con-20027034" target="_blank">ASD</a>. It's small enough to not be of any concern. Libby has one also, somewhat larger. She also has some mild thickening in her ventricular wall, but not a cardiomyopathy. Both girls will have it re-evaluated in one year. </div>
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I had a moment during Libby's echo. All I could think was 'Omg, I have to do this again'. But how did I get two kids with a congenital heart defect, mild as it is? The cardiologist wants to see if they will close over time, because there's a thin membrane in both of the ASDs. Libby definitely had more shunting of blood then Daja's defect did. I wonder if Chris will have this too. Even though it's all mild and not causing any problems, it's a little scary for me, the thought that their hearts aren't perfect.</div>
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I'll post more once Chris is checked out.</div>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com1tag:blogger.com,1999:blog-1102972561834459270.post-49741840495708926902014-05-19T08:09:00.001-07:002014-05-19T08:09:39.096-07:00One Year Anniversary for Transplant<p dir=ltr>It's been a long time since I've posted....since June of 2013 I believe.  What's happened in that time?  Not much, which is a good thing.  Carlos has done remarkably well aside feom some weight gain issues.  He's been the picture of health since receiving his gift of life.  He's even weathered a cold and a stomach virus without any difficulty!</p>
<p dir=ltr>This week he has a full evaluation.  Today he had a ton of blood drawn....10 tubes.  And now he is waiting for his left heart cath.  I guess the plan is to evaluate his heart function, pulmonary function, etc.   He normally only has a right heart cath, which they do for biopsies to evaluate for rejection.  Tomorrow he has a bunch of other less invasive tests then follow up with the docs and nurses on Wednesday.  We anticipate a clean bill of health.</p>
<p dir=ltr>I remember when I used to get so nervous about the heart caths, I would ask a friend or family member to sit with me.  Seems so ho-hum now.  I told Carlos it's hard being the family member.  When he would have surgeries, he would get to sleep or get really good drugs.  They should consider drugging the family members too...at least provide an ativan lollipop or three!</p>
<p dir=ltr>I just got done giving him a hug before he goes back and gets the good drugs. It's very cool that one of his nurses is the mother of one of my patients. There's a little extra comfort in that :)</p>
<p dir=ltr>So now that it has been a year, I'm contemplating writing a letter to his donor family. I would ask the kids if they want to write as well. It's a very emotional thing and I worry that it will be difficult to adequately express my gratitude in a written format. But I think it's worth trying.</p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0Mayo Clinic Hospital 5777 East Mayo Boulevard, 5777 E Mayo Blvd, Phoenix33.658558 -111.95606tag:blogger.com,1999:blog-1102972561834459270.post-75493428540712569912013-06-17T10:09:00.001-07:002013-06-17T10:09:38.946-07:00Some Fun Photos<p dir=ltr>Just some fun photos I took while hanging out at the Mayo. </p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQSjZ3CUoCximB2IKJ2E2Xx8-VDaXy4Y0X_TA5gPI0nUr9G6NQt3Skb8X3q5h0Th_vwv1rdN_GHewBdXzuSZYOj0T5SRda0wt3s6GJSp_4BjQvDH7n_65_6swLyzDVgs6X3UJ7NvJ-l7_Q/s1600/20130605_110513.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQSjZ3CUoCximB2IKJ2E2Xx8-VDaXy4Y0X_TA5gPI0nUr9G6NQt3Skb8X3q5h0Th_vwv1rdN_GHewBdXzuSZYOj0T5SRda0wt3s6GJSp_4BjQvDH7n_65_6swLyzDVgs6X3UJ7NvJ-l7_Q/s640/20130605_110513.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt4mAt2k2TulzJopR-BVJEtVOdnU7FwDSVoUKgnB3Eiu61Lp1CUNpVjNn-4Qww5XU0h4c7bLInY6U2m9Q9u9HzpS0MGMRgTLjGDrUUSG2Gu1kOoBu4CJO6IDxWB1byjDXchjEGKGpeibKc/s1600/20130605_110456.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt4mAt2k2TulzJopR-BVJEtVOdnU7FwDSVoUKgnB3Eiu61Lp1CUNpVjNn-4Qww5XU0h4c7bLInY6U2m9Q9u9HzpS0MGMRgTLjGDrUUSG2Gu1kOoBu4CJO6IDxWB1byjDXchjEGKGpeibKc/s640/20130605_110456.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwYhswYjUa7azmQZqgtgcj93El8We7jFGH2qyXrQzl3-hd_1Wgd4kPmlQCAarSvvLfADe3oE4477lbeSSuxLyoN9-Wh04NLFLUBAgafk62qa-JsoJERNkGcRWKmOuuVwntQKEZ5k0fG_Oa/s1600/20130605_110434.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwYhswYjUa7azmQZqgtgcj93El8We7jFGH2qyXrQzl3-hd_1Wgd4kPmlQCAarSvvLfADe3oE4477lbeSSuxLyoN9-Wh04NLFLUBAgafk62qa-JsoJERNkGcRWKmOuuVwntQKEZ5k0fG_Oa/s640/20130605_110434.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpWfPEYvwnmqcEl-ThOyI4jhMDr1rW9SK9fa812uKYHEJB_29p-MUTtWMxwd32zOZS9h55pkyvGZ1_QjN5LR7uxwtstUv9-ZvDxHkm25YJLF05gPshk8HJ9Lv3D6kkj6AUZnz3uNJkm1dZ/s1600/20130605_110426.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpWfPEYvwnmqcEl-ThOyI4jhMDr1rW9SK9fa812uKYHEJB_29p-MUTtWMxwd32zOZS9h55pkyvGZ1_QjN5LR7uxwtstUv9-ZvDxHkm25YJLF05gPshk8HJ9Lv3D6kkj6AUZnz3uNJkm1dZ/s640/20130605_110426.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHUxW_X1yKtJ6DBAvuYDCq1VSGxRQTKYJOymflRawFIam3AYJXV2aaxA0Fp13h6jkXn0uZ0Z13cu0rSQWhvNQ8Rv8BTSxH5XmYo9HW0b7B8qlgQmGBbGDqpXQjBTT_v_zZF-wivRqxrOVm/s1600/20130604_150404.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHUxW_X1yKtJ6DBAvuYDCq1VSGxRQTKYJOymflRawFIam3AYJXV2aaxA0Fp13h6jkXn0uZ0Z13cu0rSQWhvNQ8Rv8BTSxH5XmYo9HW0b7B8qlgQmGBbGDqpXQjBTT_v_zZF-wivRqxrOVm/s640/20130604_150404.jpg"> </a> </div><div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHlxYJjMWjVtDBiPzgp86OA4JkKaHhEyrycDls_h6GuDKsVhOtDAoH-ZPZH_OFkVjvsg9ehAvA0dQE80p-MOPWnUsxAUxnWUoLyDpGvle5A098stNu7j0EvUNRTRCI3W4BofQhZJiwdIIL/s1600/20130604_150240.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHlxYJjMWjVtDBiPzgp86OA4JkKaHhEyrycDls_h6GuDKsVhOtDAoH-ZPZH_OFkVjvsg9ehAvA0dQE80p-MOPWnUsxAUxnWUoLyDpGvle5A098stNu7j0EvUNRTRCI3W4BofQhZJiwdIIL/s640/20130604_150240.jpg"> </a> </div>Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-73130818044566870872013-06-17T07:13:00.001-07:002013-06-17T10:03:20.729-07:0024 Days Post Transplant<p dir=ltr>I can't believe I haven't blogged in 12 days!  I think it's mostly because there isn't anything exciting to report and that's probably a good thing.   </p>
<p dir=ltr>The biggest thing going on is continuing to tweak his meds.   His prograf levels are still high but slowly coming down to a normal level.   The last check was 14+ (therapeutic is 8-12).  He had a day where he had the shakes.  Apparently that's a common side effect especially when your levels are high.    I had found some heart transplant facebook groups and there was a whole thread about this.   Of course,  in typical Carlos fashion,  he didn't mention this until we were at a check up.   He got the lecture about calling if anything came up.   It's the 'if you even think about calling us,  call us' line of thought. </p>
<p dir=ltr>He had one day,  where he was dizzy every time he was standing up.   Despite no unusually low blood pressures, they opted to stop his cardizem.  There hasn't been a repeat since.   Dizziness can also be a side effect of prograf.   His blood pressure is high when he first gets up but then drops as the day goes on.   He keeps a log of his daily weights,  temps, a couple blood pressure checks.   His weight has continued to drop everyday except for today.   He has lost 12 pounds since discharge. </p>
<p dir=ltr>We are at Mayo today for weekly biopsy.  He's having xrays, Labs and an echo done as well.   His biopsies have all been a 0 so far and we hope to continue that.   That indicates the amount of rejection of the new heart.   A 0 is none and 3 is major rejection.  A 1 is common and nothing gets done with that. </p>
<p dir=ltr>While we have felt very supported by family and friends,  it came to my attention that there are those out there who think that the heart failure Carlos had was his fault and that he hasn't been getting good care.   I guess they think he wasn't taking very good care of himself.   Obviously they haven't read his story or maybe don't believe it.   It makes me mad because this wasn't his fault.   He didn't smoke,  wasn't doing drugs, rarely drank alcohol.   He may have been a little overweight but that's it.   Never had high blood pressure.   Never had high cholesterol.  In fact,  when he was first diagnosed,  they couldn't find any reason why this happened.  No coronary artery disease, nothing!  The doctors have always felt it was genetic.   They have isolated a gene associated with dilated cardiomyopathy and suspect it runs in Carlos' family.  I wish people would mind their own business or talk to us directly instead of speculating based on second or third hand information.  I also take this stuff personally because it implies I haven't taken very good care of him.  We accept only positive voices in our lives,  no negativity.   Fortunately there are many who contribute that positivity :)</p>
<p dir=ltr>We have been receiving meals almost every night and want to thank everyone for your assistance!   Those meals make a huge difference for me.   Last week was a very hectic week and I really started to struggle by the weekend.   A major meltdown occurred and I'm embarrassed by it.   It was just a combination of stress,  poor rest,  and feeling overwhelmed.   I'm anticipating a lighter week this week so expect things will be more manageable.   Only two trips to Mayo this week!   Yay!</p>
<p dir=ltr>The kids are handling everything well.   It's amazing what we all can adjust to... </p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com1tag:blogger.com,1999:blog-1102972561834459270.post-67982833918448425262013-06-06T17:37:00.003-07:002013-06-06T17:39:31.301-07:00Got Drugs?<p dir="ltr">Carlos had to go through his meds and place them in his pillbox for a week under the watchful eye of Stacy (one of the nurse coordinators) and myself. It's a 30 minute production! You can see the volume of bottles and amount of pills in the pictures. It's pretty amazing! </p>
<p dir="ltr">He's still getting IV antibiotics for 5 days for the cellulitis. The home health nurse came and showed me how to do it. I had to dredge up some old school skills. As a provider I don't do much with IVs anymore. It's like riding a bike though. </p>
<p dir="ltr">Carlos is doing well. He said he had a decent nights sleep for the most part. He woke up a couple times looking at the LVAD equipment. I figure it will take a couple nights to adjust to his own bed and schedule and no LVAD equipment.</p>
<p dir="ltr">I went in the pool today for the first time this year. The water is perfect at 83 degrees. The kids and I had fun playing volleyball. Can't wait until Carlos can join us! </p>
<div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPscUCf9Ou-AAf8rMYKar-NoRsxK60boPzCf-XaqKhoEQgX_JhygtvgEtp0h-N1dNrBEpSnZm0JOfvhDQ6GWwBdC_9vu0DOFUmlyKI0BLU3ZwAyYW8HU5VbYPksslpSBZoVBUs75ofgSr0/s1600/20130605_164059.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPscUCf9Ou-AAf8rMYKar-NoRsxK60boPzCf-XaqKhoEQgX_JhygtvgEtp0h-N1dNrBEpSnZm0JOfvhDQ6GWwBdC_9vu0DOFUmlyKI0BLU3ZwAyYW8HU5VbYPksslpSBZoVBUs75ofgSr0/s640/20130605_164059.jpg' /> </a> </div><div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkAOVdaT3AF0ZNJBqqpdtmp8dhtoeeughWsHKBVgGZD3XIQbJwMV3krGkQ-RkkspPaqOvdAtX0MvdOQdPKFdXNSF0jn6v_mFRZDgWFU9TclakPhBXy5alXktuHZNTtNZydRNZjkAzmlIfD/s1600/20130605_171006.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkAOVdaT3AF0ZNJBqqpdtmp8dhtoeeughWsHKBVgGZD3XIQbJwMV3krGkQ-RkkspPaqOvdAtX0MvdOQdPKFdXNSF0jn6v_mFRZDgWFU9TclakPhBXy5alXktuHZNTtNZydRNZjkAzmlIfD/s640/20130605_171006.jpg' /> </a> </div>Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com2tag:blogger.com,1999:blog-1102972561834459270.post-62695899285393494412013-06-05T12:42:00.001-07:002013-06-05T12:42:11.736-07:00Discharge!!!<p dir=ltr>Today is discharge day and we are so excited!  It won't be until later today but we don't care :)</p>
<p dir=ltr>His prograf levels are therapeutic now after giving him extra prograf along with increasing his dose.  </p>
<p dir=ltr>His potassium is high so they started a couple new meds yesterday to decrease it.  He has to go home on a low potassium, diabetic, and heart healthy diet.  I wonder if they have a website for that combo of restrictions!  Fortunately the potassium and diabetic stuff is temporary.  It's looking like no need to check blood sugars at home but don't know about that for sure yet.</p>
<p dir=ltr>We are going to the transplant support group shortly and then the transplant coordinator will come by to do the discharge teaching and organize meds.  They supply him with a month worth of meds upon discharge and help him fill his pill box the first couple weeks.  </p>
<p dir=ltr>More later</p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-55347699671413354792013-06-03T20:33:00.000-07:002013-06-03T20:34:43.387-07:00Bad News But Not ReallyWe were told that discharge for tomorrow was a no go. It's a bummer but not really disappointing as we both kinda didn't believe he would really get discharged. We were prepared for that news. Now they are saying Wednesday but we wouldn't hold our breath. Instead, we will focus on Thursday or Friday. Much better to get things handled than to go home and him get re-admitted.<br />
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He has not reached a therapeutic level for his prograf. The goal is 8-12 I believe and he's just into the 5's today. They keep upping the dose. They said that different people metabolize differently and this is also common in men and black people. They really need his levels to be stable before sending him home.<br />
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He had his first <a href="http://www.nlm.nih.gov/medlineplus/ency/article/003873.htm" target="_blank">heart biopsy</a> this morning. No big deal as it's not much different from getting a plain old right heart cath. Results from that tomorrow but they say rejection this early is very unlikely.<br />
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His arm looks much better today. The IV <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a604038.html" target="_blank">vancomycin</a> is doing the trick plus he's on the bactrim. Using vanc for cellulitis is like killing an ant with a sledgehammer :p Definitely on the mend although his white blood cell count remains elevated. The blood cultures aren't growing anything though which is very good. That means no blood infection.<br />
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His potassium level is on the high end of normal as a side effect of a couple of his meds so they are watching that closely as well.<br />
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Last creatinine from yesterday was 1.0 :)<br />
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He's in pretty good spirits as are the rest of us. It's a lot easier to be positive than last time :) He is gonna get to shower tomorrow - that's pretty exciting because it was such a production with the LVAD and he hasn't showered since May 23rd! They tell us he can be in the pool at 8 weeks post-op. He will have to be super careful with sun exposure since the meds can increase his risk for skin cancer among other things.Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-83573664517314696902013-06-01T16:16:00.001-07:002013-06-01T16:22:37.418-07:00Happy Birthday and Cellulitis<p dir=ltr>Well, I texted Carlos to wish him a happy birthday when I woke up this morning.  The response I got was less than chipper.  Of course, I ask wtf is up?  He decides to be coy and says I'll tell you when you get here.  My stomach churns the entire drive to Mayo.</p>
<p dir=ltr>Unfortunately the arm Carlos has been having trouble with (numbness, pain, stiffness) now has cellulitis from the wrist to the armpit.  They started him on Vancomycin.  We saw an orthopedic surgeon as well.  He came to look at the arm and evaluate the nerve pain and numbness issues.  He said at this time, we would continue with current treatment.  If that didn't seem to be resolving the cellulitis and/or if the pain and numbness seemed to be worsening, he would order an MRI and consider surgical options.  We are very much hoping that will not be necessary.  His white blood cell count shot up to 15 so they did collect blood cultures and urine.</p>
<p dir=ltr>The only other less than positive news is that he still has not reached a therapeutic level for the prograf.  So they gave him <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a684027.html">diltiazem</a> which helps the prograf to reach higher levels :-)   They have weaned the prednisone again.  He's done to 15mg twice a day.  He was on 25 a couple days ago.</p>
<p dir=ltr>He went to the third floor for cardiac rehab and rode an exercise bike for ten minutes.  I didn't go but I hear there's all kinds of cool stuff down there, like Dance Dance Revolution, etc.  They have a kitchen for patients to practice in as part of their occupational therapy.  Pretty cool.</p>
<p dir=ltr>We were very excited to learn his new ejection fraction is 65%!  That had us in awe.  His previous EF was 10%.  Dramatic difference and we are so thankful.</p>
<div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGTem9naW8WEhVsN7sxLHkSpg5-Le_iM5SEe16eXwY5QUkRpi6UO9cf_3rmrVbsLrVB3GHetxNDqiKqDPL9z5RU8SIyGZGKujcrxJFl8lSbzFT2NvHWchKEc3mcuoRb0jhBCpIsvMEn5a1/s1600/1370128542042.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGTem9naW8WEhVsN7sxLHkSpg5-Le_iM5SEe16eXwY5QUkRpi6UO9cf_3rmrVbsLrVB3GHetxNDqiKqDPL9z5RU8SIyGZGKujcrxJFl8lSbzFT2NvHWchKEc3mcuoRb0jhBCpIsvMEn5a1/s320/1370128542042.jpg' /> </a> </div>Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-37523213604780450182013-05-30T20:39:00.000-07:002013-05-30T20:39:11.676-07:00I'm Tired and Can't Think of a Post TitleCarlos had another great day. More walking. A little bit of very unmanly crying when seeing Stacy, the transplant coordinator we have always kinda favored. A couple units of blood due to a drop in his hemoglobin (7.0, was previously steady at 7.2). That's probably from all the blood they draw!<br />
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His creatinine is an amazing 0.7! Haven't seen that in years! I almost wonder if it was a lab error because it's a dramatic drop from 1.2 yesterday. But he is still needing a little lasix to give his kidneys a boost to pee :)<br />
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He has now started on all the transplant meds since they started <a href="http://www.valcyte.com/patient" target="_blank">Valcyte</a> today. The meds are valcyte, <a href="http://www.pfizer.com/products/rx/rx_product_diflucan.jsp" target="_blank">diflucan</a>, <a href="http://www.drugs.com/bactrim.html" target="_blank">bactrim</a>, <a href="http://www.cellcept.com/cellcept/" target="_blank">cellcept</a>, <a href="http://www.prograf.com/" target="_blank">prograf</a>, and <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601102.html" target="_blank">prednisone</a>. He pretty much knows the names and what they are for. Now he will start learning his doses, etc. There will be a good bit of education over the next few days.<br />
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They are estimating discharge for mid next week. We will hold out for early next week but not too stubborn about it. We want to be safe of course. But, me being a nurse, I worry about hospital infections. <br />
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He will have an echo tomorrow and I am excited to hear what his new <a href="http://www.mayoclinic.com/health/ejection-fraction/AN00360" target="_blank">ejection fraction</a> is. He'll have his first heart biopsy on Monday. He will get that done every week for the first four weeks then every other week for awhile. <br />
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He starts inpatient cardiac rehab tomorrow :) <br />
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Someone from endocrinology came by but they are holding off on teaching him how to check his own blood sugars. He has had very little need for insulin. They are cutting the dose of prednisone down on Saturday so may not need any at all. They said they will wait until early next week to teach if it's necessary.<br />
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We had visits from Kim and from an LVADer that we had previously only talked to online. Pat is an amazing woman with an unbelievable story! We really enjoyed meeting her and chatting. Daja and Libby hung out at Jenny's house with her ten year old daughter. They enjoyed themselves :)<br />
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I am just so tired by the end of the day. I'm not sure but think it's a combination of my RA/fibro and the stress of everything going on. The meals have been helping hugely - as many of you know, I don't like to cook and it's just one less thing to deal with. Thanks everyone for your help!Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-22715103594017371342013-05-29T21:11:00.002-07:002013-05-29T21:11:22.093-07:004west!Carlos got moved to 4w - woot!<br />
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He had a good day for the most part. He was up pretty early so was sleepy by this afternoon. He walked laps about 0530! He had PT and is getting up and down from the chair much smoother and easier. They shut off the <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682861.html" target="_blank">dobutamine</a>. They use it to keep the new heart pumping as strong as possible then wean off it. It also keeps the blood pressure up, which sometimes runs low secondary to the volume depletion. His hemoglobin is chilling at about 7.2 (normal is 13-17). Unfortunately, when he walked a second time, he experienced <a href="http://www.mayoclinic.com/health/orthostatic-hypotension/DS00997" target="_blank">orthostatic hypotension</a>, and wasn't feeling well. They opted to give him some albumin and left the dobutamine off. That seemed to help a bit.<br />
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He started prograf today. They pulled the remaining chest tubes. He has the PICC line and still has the pacing wires in but those haven't been used. That's it! <br />
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We saw the nutritition lady to review dietary precautions and restrictions for transplant patients. She also reviewed the diabetic diet which he will need to follow for awhile. He did get a dose of insulin today, which I think was the first time since they stopped the insulin drip. His sugar was 149.<br />
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His creatinine is 1.2 - wow! Haven't seen that number in years! He's still hanging onto fluid. The arm with the clot is so swollen :p<br />
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Heading to bed - I'm beat!Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-83166107914656246652013-05-28T14:50:00.001-07:002013-05-28T14:50:27.034-07:00Batcave<p dir=ltr>We are stuck in the bar cave another day.  His kidney function isn't fantastic yet despite the <a href="http://www.nlm.nih.gov/medlineplus/ency/article/003475.htm">creatinine</a> dropping to 1.3.  He hasn't seen a normal creatinine level in a long, long time.  They gave him some IV lasix as he has some noticeable swelling, and not just in the arm with the blood clot.  His weight has gone up despite the fact that he continues to have decreased appetite.  The lasix worked well and he started producing a lot more :-)   </p>
<p dir=ltr>The appetite is slowly increasing.  He's working hard to get the protein in, which helps with healing.  He walked four laps this morning and is ambulating to the restroom without assistance, unless you count someone pushing the IV pole and carrying the chest tube drainage collector thing.  </p>
<p dir=ltr>Blood sugars remain in great control.  He's getting a third dose of the thymoglobulin.  They want to continue to hold off on the <a href="http://www.prograf.com/">prograf</a>  until his kidneys perk up a little more.</p>
<p dir=ltr>They took out the arterial line so now he only has a PICC line and the chest tubes.  He's doing very well!</p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-5128328156744744302013-05-27T13:05:00.001-07:002013-05-27T15:09:07.730-07:00Can We Go Home Yet?<p dir=ltr>Carlos is doing great!  Yesterday he got up to the chair a couple times.  He was moved to a clear liquid diet.  They removed the <a href="http://en.m.wikipedia.org/wiki/Pulmonary_artery_catheter">Swan-</a><a href="http://en.m.wikipedia.org/wiki/Pulmonary_artery_catheter">Ganz</a><a href="http://en.m.wikipedia.org/wiki/Pulmonary_artery_catheter"> catheter</a> in his neck and replaced it with a <a href="http://picclinenursing.com/picc_why.html">PICC</a> line.  </p>
<p dir=ltr>Today has been a little more exciting in terms of progress.  He walked three laps around the ICU pod.  I posted a picture on Facebook of that.  Libby video'd  the whole event with her Nintendo 3DS.  He's on solid food now although his appetite is still poor.  I reminded him about the need for protein for healing and strength.  They took out two of the four chest tubes.  I took Libby out for that as it can be pretty painful.  They removed the ladder catheter so now he's on his own to pee.  I'm sure he'll pee everywhere now :-)   He's off the insulin drip and has sliding scale insulin ordered if he needs it but his sugars have been good so far.  The prednisone can cause elevated blood sugars since it is a steroid.  Steroids are used to suppress the immune system so it doesn't attack the new heart.  He will stay on prednisone for about 9 months.  He's still on do but amine and some IV antibiotics.  They want to give him one more dose of thymoglobulin today.  They are considering more blood products as well.  Tomorrow, he will move to 4w. He had a small blood clot in his arm but it is superficial and they don't seem too concerned. </p>
<p dir=ltr>I'm disappointed to be missing the Mercury game today.  We had bought a Living Social deal to get box seats and photos on the court with the team afterwards.  I gave my ticket to Joy so Kim was talking Daja and Joy.  But Carlos, Libby, and I are gonna watch it here from his room :-) </p>
<div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPRXUBthGhsGQhZ9Cr_Bf1y78gg9KcbBqv69bKzULMWQt4OXyp7A08KJj4hpkLqQT4vUJvyF4hcZrQ5Qvy9mO5ZcR38w7fUddzmUKMIqPHFbDpRhVIcuy0wTMrP9l7c1YpgXIyfmf36Rb2/s1600/1369683928115.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPRXUBthGhsGQhZ9Cr_Bf1y78gg9KcbBqv69bKzULMWQt4OXyp7A08KJj4hpkLqQT4vUJvyF4hcZrQ5Qvy9mO5ZcR38w7fUddzmUKMIqPHFbDpRhVIcuy0wTMrP9l7c1YpgXIyfmf36Rb2/s320/1369683928115.jpg' /> </a> </div>Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-31170956770000405242013-05-27T12:44:00.001-07:002013-05-27T12:44:27.039-07:00It's Just a Piece of Paper<p dir=ltr>Carlos and I had a moment yesterday.  It involved Kleenex :-).  I was telling Carlos that we would go to the transplant support group on Wednesday and maybe he could talk to some LVADers who were having a hard time.  Unbeknownst to me, he was asked to come talk to an older couple last Tuesday, where the husband was being counseled on an <a href="http://www.mayoclinic.com/health/lvad/my01077">LVAD</a> for destination therapy.  So Carlos talked to the couple about life with an LVAD and all it had done for him.  Carlos felt that this was what God was waiting for him to do before he could receive his gift.  It was an emotional moment for us.  </p>
<p dir=ltr>Last night, my mother and I chatted over a glass of wine or three.  Prior to transplant, I always rationalized transplantation.  I felt like a person was going to die, whether we took that heart or not.  People in the LVAD groups would talk about 'the gift'  and it sounded so cliche and trite.  That was me rationalizing the whole process again.  It's a medical procedure, not something spiritual and mystical!  But then it happens to you, and your perspective changes.</p>
<p dir=ltr>Before getting married, I always felt like a marriage certificate was just a piece of paper.  We didn't need a piece of paper to tell us we were committed.  But then you take the leap and get married.  And it is different.  I felt a stronger connection to Carlos.  Being committed in the eyes of the law added a new layer of intimacy.  It was no longer as easy to walk away if things didn't work out.  Getting the gift of a new heart changed my perspective.</p>
<p dir=ltr>Even though a person can choose to be an organ donor and indicate their wishes to family and friends, this doesn't mean a family has to follow through.  By law, the family can deny organ donation.  And many families do because of grief, religious beliefs, etc.  I really began to think about where this heart had come from and the family members of the person who died when the heart was removed.  How can you ever thank someone for making that decision in the midst of their despair?    I am now amazed and astounded at the generosity it takes to extend this lifesaving gift.  It was very emotional last night, and even now as I type, to contemplate.  </p>
<p dir=ltr>I want to thank the family who agreed to save our family while theirs may have been falling apart.  Organ donation is much more than a medical procedure and triumph.</p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-32235838278520002002013-05-25T21:42:00.001-07:002013-05-25T22:07:07.632-07:00It Was a Good Day in Transplant Land<p dir=ltr>It was a good day.  Things are looking as they should.  When I walked in he was much more alert than yesterday.  I figured since he was a captive audience with no ability to grab the remote, I'd chatter away at him.  He responded with nods to questions and was just more engaged than your average unconscious patient :-) </p>
<p dir=ltr>He saw the PT and OT ladies.  They did some range of motion and he showed off.  They were asking if he had a cane or walker at home.  I looked at them like they were crazy.  I told them he had been going to the gym up until the day prior to The Call.  They were surprised.  I told them, we don't play around.  We've got a volleyball dynasty to grow!  We discussed any potential issues once he goes home...like stairs, etc.  Fortunately our bedroom is on the first floor so he won't have any issues there.</p>
<p dir=ltr>They did start the <a href="http://www.drugs.com/cdi/thymoglobulin.html">thymoglobulin</a> but at a much slower rate.  He tolerated that fine.  The plan was too extubate if he passed RT's tests once the med was done.  It took a little longer to make it happen and in fact, I thought the ICU intensivist was going to not order it.  But when I got back into the room he was off the vent with just a little oxygen nasal cannula, smiling at me :-).  Oh happy days.  I can always handle just about anything as long as he can talk to me.  Him being heavily sedated and on a vent are just not things I tolerate well.  Anyway, I didn't have to lay the smack down so all is well...lol.  </p>
<p dir=ltr>So kidneys are improving with creatinine at 1.8  and good output.  Minimal drainage from the chest tubes.  They say those stay in an average of 3-5 days.  Still no need for the pacing wires and the <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682861.html">dobutamine</a> is being weaned down.  The epinephrine was shut off much earlier today and he has kept his blood pressure up.  He's been getting his anti-rejection and anti-infection meds by IV but tomorrow they will start transitioning to oral medication.  He will start to get up tomorrow and move around a bit as well.</p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-25692319177021351062013-05-24T19:14:00.001-07:002013-05-24T19:32:08.768-07:00Drama Mama<p dir=ltr>Carlos had a bit of drama.  They started him on a medication called thymoglobulin that he really didn't like.  I wrote this whole long post and this stupid program didn't save it.  So here's the short version.</p>
<p dir=ltr>He had some unpleasant side effects that are common so things were feeling a little intense.  Blood pressure dropped, there was projectile vomiting with something that looked like blood at first glance, etc.  It was exciting to say the least.  He was stable again when I left.  He was nauseous but communicating more, not liking the lying flat on his bed, and the tube in his throat.  They have him back on minimal vemt settings so hoping maybe he will be ready to be extubated this evening as originally planned.</p>
<p dir=ltr>Then I'm going home to sleep.  Its been a lot of hours since I last slept.  Its like working a busy weekend!</p>
Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-23555504301002221582013-05-24T14:25:00.000-07:002013-05-24T14:48:43.385-07:00Deja Vu<p dir="ltr">Kim and I are sitting here chilling with Carlos.  He got into his ICU room about  1050 this morning but we didn't get back here until about 1215, once they had him tucked in.</p>
<p dir="ltr">One of the transplant doctors came and talked to us after surgery.  They had a tough time getting in and getting the old heart and LVAD out.  There was a lot of scar tissue which, considering how he keloids on external scars, didn't surprise me.  Because of the that, he had quite a bit of bleeding.  He received a bunch of blood products.  See picture below :-)   They got the new heart in and it immediately started beating.  In fact, its right where they want it and he's not requiring any pacing.  They removed his BiV pacemaker as well. </p>
<p dir="ltr">He's already breathing spontaneously on the lowest vent settings.  They want him to wake up a little more before extubating but sounds like it will be by tonight if not sooner.  He has lots of other stuff hooked up as you can see in the picture...chest tubes, various lines, and the event.  His kidneys got a little ticked off so creatinine went up to 1.9 from 1.6, but output is great and they aren't concerned.</p>
<p dir="ltr">I love watching his heart rate.  Not a single PVC or other arrhythmia.....just very steady beat.  Unfortunately, I did not get a picture of his old heart.  They wouldn't let me have it in a jar either :p. The nurse said it was pretty amazing to look at the difference between the two hearts though.  She said his old heart was big and floppy while the new was tight and smaller. </p>
<p dir="ltr">We don't know anything about the donor at this point.  I think there will a lot of time later to think about that but I'm so incredibly thankful that despite someone else's suffering we can have this gift. </p>
<div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG8QWApy1Rit0K8_rCjV2WQyJNSqCkxar2CV4XYryBfIFrMpsjN_yG8LucfGmLZWUZXBps40e6ThAX8owbmJkQoP-vjE5WIC0uo2pRxTiQgFSL2wnIRtQWw8bHjXlfD1poRV04Q3fe6yjF/s1600/20130524_124030.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG8QWApy1Rit0K8_rCjV2WQyJNSqCkxar2CV4XYryBfIFrMpsjN_yG8LucfGmLZWUZXBps40e6ThAX8owbmJkQoP-vjE5WIC0uo2pRxTiQgFSL2wnIRtQWw8bHjXlfD1poRV04Q3fe6yjF/s640/20130524_124030.jpg' /> </a> </div><div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnCDdFyvNYJy8zmeQuOSUDdPxmlDUySyhuyYP2v4_gniYT6PHbRuySv5lbA-hMiBGPTzRtEjfn3TljbWHfFrR-euPDxrqp7Db6auxRMjblG_YOV7g4XM5DTHidWauzbTgGmGJMekfYxcn0/s1600/1369432016118.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnCDdFyvNYJy8zmeQuOSUDdPxmlDUySyhuyYP2v4_gniYT6PHbRuySv5lbA-hMiBGPTzRtEjfn3TljbWHfFrR-euPDxrqp7Db6auxRMjblG_YOV7g4XM5DTHidWauzbTgGmGJMekfYxcn0/s640/1369432016118.jpg' /> </a> </div>Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com1tag:blogger.com,1999:blog-1102972561834459270.post-2361785477862033382013-05-24T01:51:00.000-07:002013-05-24T01:51:04.859-07:00The Call part two9:30. Beth arrives. The inappropriateness reaches new levels.<br />
<br />
10:15. My mom arrives. We keep cracking jokes at Carlos' expense. But it keeps the mood light.<br />
<br />
10:35. The nurse comes to take Carlos to pre-op. We follow like groupies then head to the waiting room to set up camp. We'll get to see him once more before he goes back.<br />
<br />
12:00. The witching hour. We go back to sit at his bedside until it's time. Carlos is a little woozy from his visit with Dr Feelgood. He now has a Swan Ganz catheter in his neck and an arterial line. He's in good spirits so we continue with the inappropriate jokes. <br />
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12:40. They took him back and now the wait begins. We have heard anything from 6 to 12 hours.Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com0tag:blogger.com,1999:blog-1102972561834459270.post-64413253038922960262013-05-23T21:10:00.001-07:002013-05-23T21:20:43.328-07:00The Call<p dir=ltr>3:07pm. Carlos comes walking into the bedroom crying and hands me his cell phone.  The girls follow behind asking what's going on.  Two of the nurse transplant coordinators are on the phone and tell me they have a heart for Carlos.  I accuse them of playing a joke.  This really felt out of the blue for both of us.  We really had resigned ourselves to a two year wait and it's not been a year and a half yet.  </p>
<p dir=ltr>4:20. Arrive at Mayo to check in.</p>
<p dir=ltr>4:40  Someone finally checks him in.</p>
<p dir=ltr>4:55. We get to the room.  And stuff starts getting done.  Chest X-ray, bloodwork, etc.  </p>
<p dir=ltr>7:55 The chaplain comes in to chat.  That's disconcerting when you are waiting for open heart surgery.  We pray holding hands.  Then we burned some incense and chanted.  Haha.  We did pray though.</p>
<p dir=ltr>8:00 Kim's mother , who passed away 6-7 months ago, sent a message that all would be well and don't take the fentanyl (inside joke involving hallucinations and fentanyl).</p>
<p dir=ltr>8:45   I put the nurse through the third degree regarding surgery length of time, did the surgeons sleep today, etc.</p>
<p dir=ltr>8:50. Heidi arrives with supplies (Powerade, Xanax -lol, and food).  We are laughing our asses off.  </p>
<p dir=ltr>Latest info - he heads to preop at 1030 and surgery at 1130.  More to come....</p>
<div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGlWi304Y5HvbY9WIzZoVWIIwhWfzl92WcDWTLAUXpwrFGtDEjHXWTDakBQR0ZUVokoyjOpjg5JZuQaC5qQCJoQR6ZTFnzuEOfi66_NSerWlyCATDmMbAUt5et79vzK5EAEg6Akc9QuSU9/s1600/2013-05-23%25252018.09.11.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGlWi304Y5HvbY9WIzZoVWIIwhWfzl92WcDWTLAUXpwrFGtDEjHXWTDakBQR0ZUVokoyjOpjg5JZuQaC5qQCJoQR6ZTFnzuEOfi66_NSerWlyCATDmMbAUt5et79vzK5EAEg6Akc9QuSU9/s320/2013-05-23%25252018.09.11.jpg' /> </a> </div><div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd2jmWmVU2VtFmGQAcM85n3T5wb8Qg62juFrSrwmrmkJWAtYZKPUQ4qigunScRDVkqjeu5_PhKCG44LeSczjYBH_N-lRrZgxwUXc4k_5617DP-EruI2TJDnW7H7An50wBDQ9mm8SpSHNVv/s1600/2013-05-23%25252018.30.03.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd2jmWmVU2VtFmGQAcM85n3T5wb8Qg62juFrSrwmrmkJWAtYZKPUQ4qigunScRDVkqjeu5_PhKCG44LeSczjYBH_N-lRrZgxwUXc4k_5617DP-EruI2TJDnW7H7An50wBDQ9mm8SpSHNVv/s320/2013-05-23%25252018.30.03.jpg' /> </a> </div><div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPLc9tVbjvqwwzKSf4IMjqZMeqw8XyGnKXKAUaf2jQBqYyoDWzcq34ktF7rffjsx9wdMbYb1EbwIqxoJ_PU9U7CLfvPNziwEVFYdokfKINfEluZ_P-FOcAhJpwV79GKsLI_GAuGFIbolYf/s1600/20130523_171333.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPLc9tVbjvqwwzKSf4IMjqZMeqw8XyGnKXKAUaf2jQBqYyoDWzcq34ktF7rffjsx9wdMbYb1EbwIqxoJ_PU9U7CLfvPNziwEVFYdokfKINfEluZ_P-FOcAhJpwV79GKsLI_GAuGFIbolYf/s320/20130523_171333.jpg' /> </a> </div>Tiffanyhttp://www.blogger.com/profile/15620271975224848265noreply@blogger.com1