Thursday, December 26, 2013

First heart biopsy

The resident who was on call the first night Danny was admitted to Ochsner in New Orleans is who did the biopsy on Danny today. This resident, Sean, is really great and has been one of the reasons our experience at Ochsner has been so wonderful. However, Sean is a student, and students do need to learn somewhere! Unfortunately and fortunately, Danny has been the practice/learning patient for Sean during quite a few procedures and experiences over the last year or so. It's a good thing Danny really likes Sean! 

A heart biopsy is similar to a heart cath in that they go in through the carotid artery in the right side of his neck. A long tube is fed down through the artery all the way to the heart. The cath just takes pictures but a biopsy is taking a scrape or little chunk from the heart. 

Both of these procedures have to be done without any sort of sedation because the patient needs to be able to communicate quickly and clearly any potential complications...the carotid artery is not a place to be playing around in!! 

Sean begins the biopsy with the supervising doctor (Dr. Patel) watching (who has also been one of the cardiologists we've worked with throughout our time at Ochsner...after some point you feel like family!!). 

From Danny's perspective..."Lab techs get me straight, pumps right, put me on table, elevate feet a LOT, put me in a tent." This whole time Sean is saying "Oh we gotta do this..." and the lab techs are correcting him. Sean is remembering from what he learned in a textbook, which is not always exactly what real-world is.

They start doing the ultrasound and getting all measurements taken care of. The lab techs who always work in this lab know me and know how much I hate right heart caths...they know how anxious I already am and now that I realized Sean is doing the procedure, my anxiety level shoots even higher. I can't be knocked out, so they do Lidocaine. They position my neck just right and then they put the tent on. The textbook doesn't say how to put the tent on just right because they differ depending on the manufacturer. This ones window has a lot more adhesive, so he plastered the whole tent to the side of my face and head. The tech corrected him and told him how he was supposed to not take all the tape off because the tents have so much glue. Sean got numbing medicine and told me to tell him when it still hurts. The rule is when I'm in pain I'm supposed to tell him, but I'm glued inside a tent with machines humming. The thing is clamped on wrong and glued on my face and they can't really hear me talk. I'm told to tell them if I can feel anything. They said "this is gonna hurt, here comes the sting", and I feel a lot of water...I'm thinking they cut my jugular and Sean said "oops." Instead of injecting me with Lidocaine, he injected me with a flush, so water went everywhere. "Sorry...wrong one, let me try that again." It's usually a little prick, like a yellow jacket sting, that eventually goes away. But this was not like that. Patel said if you felt that then at least we are using the right medicine instead of a flush. Somewhere in all this everyone thought we were good to go. Sean is to go down in through the incision he just made with a tube and camera down into heart so the person doing the ultrasound can do what he needs to do. I remember them telling me to say when it hurts and I've been saying "yeah, it still hurts!" Sean tries to put in more Lidocaine and Patel says "make sure you are watching the monitor and go with what you see on the monitor and not what you think." The next thing I know is I got punched in the face. I kept saying "yeah that hurts, yeah that hurts", but I stop talking after the punch. The lab tech asks me if I'm still hurting and I say "yes". Patel asks if he's right or left handed and Sean says left. He's going in my neck from the wrong direction so they have to start over. So, I'm thinking, "Oh man....this has hurt the whole time and I've been saying so, I got punched in the face on purpose, and now we have to start all over..." Patel gets Sean back on track and they say "ok you're gonna feel a lot of pressure on your neck." It jugular feels like it's being smushed and the tech looks like she feels sorry for me. After many attempts, Patel says it's all good. They start talking about injecting dyes and what they see on the ultrasound machine...Sean is learning the old way of looking at an echo with bubbles and the new way with dye. Patel always uses the old way with the bubbles and the new way with the dye so he doesn't miss anything. He said sometimes the dye masks something important so he always uses the bubbles too. They took measurements and pictures of my heart. I'm still thinking "I couldn't have been punched...something fell on my tent, nobody's screaming so everything must be ok." Sean says "so now I do this?" and the ultrasound tech asks him "did you just ask that?" Patel reminds him that he needs to go in straight because he only wants to do this once. "Do you see it, do you see it? You're going in crooked, stop! Straighten up." Now I'm scared because it hurts and I don't know what's going on. I felt three different things inside my body. The tech had created a little hole in the tent so she could see me and I'm saying "Ow! Ow! Ow!" Patel says "That could be a complication, so stop." I'm thinking "oh no! This is a brand new heart and I have a complication already." Patel took over and said "You feel that?" I said "Yes, but it's not as bad." He had to start over. The three things are three cuts on the inside of my heart. I'm saying "it hurts" but Patel said "we have to do it again because I need to know exactly where it starts hurting because this may be a potential complication." Patel is giving me the steps we are going to do and I'm to tell him when I feel something. I say "it feels different." So he does it again but it does not feel like the same three things. Patel tells Sean the three things i feel must be a PVC..I have no idea what that is. But it's something they have to watch in the future because it may be a potential complication. Patel left and Sean started to do all the post-op stuff of getting tubes out of my neck. The tent is glued to my face. The techs can't really oversee what he's doing because they are looking through a small hole. The tech says "ok he's bleeding now." Sean says "that's not new blood" and she said "yes it is. Did you nick him or something?" He said "Well maybe I did during the PVC or something." They're looking and trying to figure out what to do about the liquid stuff I feel on my neck. It really hurts because they're pulling things out of my neck, and it feels so wet. Sean has to put pressure on my neck to stop the bleeding but he has to take the tent off first. "Ok Mr. Sauer, this is gonna hurt to pull the tent off because it's glued too much to your face and neck." It sounds like I heard them say the sutures from the swan (hole in the carotid) from the other day got pulled out with this procedure. So Sean is leaning onto my neck to apply a lot of pressure to stop bleeding. Patel comes back into the room and asks what they're still doing. Sean says "I think there was a problem with the first suture because it came open, so I'm trying to apply pressure to both openings." After what seemed like 15 minutes of Sean standing on my neck, he pulls the dressing off and the nurse says "that's still blood." Sean says "no, it's just old blood." He starts scraping my neck with gauze and it hurts so badly. The nurse says "Doc, that's blood...he's bleeding, you gotta keep the pressure on!" Patel comes back in and explained that "we could have waited until Thursday to do this procedure but I wanted to go ahead and show you the outpatient procedure for biopsies because you will have these weekly for a long time. I want you to start feeling more comfortable with the procedure. (hhhmmmm) I need to practice this PVC thing because it's a rare complication that we don't see often. The next time we do it we will talk about what we are going to do and I'll know to talk you through it and tell you when it's going to hurt." Patel is ready to move on to the next patient but they're still trying to get the bleeding stopped on my neck. Now I have two pressure dressings on my neck. I ask the lab tech if it's over and she said she thought so and to just relax in the dark for a minute. Sean comes over to help the lab tech (because he's a super helpful person) and starts taking the arm boards off. The tech starts fussing at him because I'm still on the table and I would fall off without the boards holding me on. I teased him some and the techs gave him some paperwork to do to get him out of the room. Patel came back into the room and said "Boy, that was really something huh?" I asked "how often do I have to do that?" He said "oh, we will do that once a week, but don't worry we'll get better at it." He offered to take me back up to my room and the tech said "No, I got this." He said "I want to go talk to his wife anyway" so Patel takes the front and she takes the back. We were all joking about him being drunk because he was talking and swerving and moving people out of the way. Doctors we pass in the halls say "oh man, you're out drinking and driving again!!"

I get back to the room and all I could tell Tricia is that I got punched. I don't think she believed me so the next time Patel and Sean came in my room I asked them if I really got punched during the biopsy and they laughed and said "Yes, you sure did! I sucker punched you to get you to be still!" 

Needless to say, Danny is not looking forward to the next biopsy. I've watched Sean learn (on Danny) through successes and mistakes for a long time now, and I think he is the most humble student I've ever seen. I know that Danny has certainly felt pain through Sean's learning, but he's handled it with grace and kindness. It's been fun to watch Sean learn how to do all of the procedures transplant cardiologists do. I wish more people learned from their mistakes and accepted positive criticism as well as he does. His future patients will be fortunate to have him as their doctor! 

Danny and I finally learned what the deal with with chest tubes. Danny's first heart was incredible enlarged and grew vertically and horizontally. To make room inside of his chest cavity for his huge heart, his lungs were pushed to the side. Now that he has a heart that is the perfect size for his body, there is a LOT of extra space. It takes a while for the lung tissue to expand back into its proper place. Until then, the body doesn't like empty space, so it fills up that space with fluid. That's the fluid that is draining out of the chest tube. The last chest tube is still draining so much because that's how enlarged his first heart was...Sometimes they take out the chest tube and just let it drain out onto a dressing. I know that would feel better...but they're going to do whatever they think is best. Currently Danny is away having a chest x-ray to see where the chest tube is. It's probably moved since the surgery and that may determine whether they take it out now or continue to let it drain. 

I think that last chest tube is the source of most of his letting the excess fluid drain out onto a dressing would be a blessing for him! 

If they don't take the chest tube out today, we should be discharged to the hotel Monday. If they do take it out today...maybe tomorrow?? 

I've never been the type of person who is super traditional about holiday meals. I've never wanted to be in the kitchen a long time and plan a big, fancy feast. I think that's been something that has maybe made the kids sad over the years...but it still wasn't something I wanted to do. It's been okay anyway because we usually go to some family member's house for the feast. 

This year, as Danny and I are stuck in the hospital over Christmas, I've really missed the festivities. My dad brought the kids to the hospital on Christmas and it was so wonderful to see them! I cried as I watched them leaving...that's sort of out of character for me too. Something in me has changed and I am so excited to cook huge feasts and make a big deal out of every holiday from now on! We should never take one day for granted and definitely make the most of each one we are blessed to have. 

We have been paying on the medical bills as they've come in with the money we have saved and has been provided. The expenses will continue for the rest of his life in the form of anti-rejection medicines, future routine check-ups, and potential diseases/illnesses that come with a suppressed immune system. If you feel led, you may donate through: 

click on: Transfer, send someone money

Thank you for your prayers and support! God Bless You!

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