Food

First of all...Danny's 3rd biopsy was negative meaning still no sign of rejection. And, his white blood count on labs was back to normal. Yaaay!! One of the anti-rejection meds was a little high on bloodwork, which can apparently be toxic if it's too high. So, they decreased that dose a bit today. Just as we grew accustomed to everything being fluid with the LVAD, medications with a transplant patient, particularly in the beginning, are also quite fluid! He has labs again in the morning to see if that anti-rejection dose is correct now. Labs are tough now because they need to fill on average 6 vials now, but his veins "blow" after only a small amount of blood is drawn so the have to stick him over and over again. Before all of this heart stuff Danny's veins were fine and drawing blood wasn't a problem, but now it's like his poor veins shrink up and wiggle out of the way anytime a needle comes near!! Danny also has big bruises all up and down his arms. Most of them are from the IV's before, during, and after transplant, but some of them are new. I know he will be so excited when it doesn't hurt to touch his arms! 

Here's some irony. One of Danny's least favorite words is food...and now, because of the Prednisone and other meds, it's one of the main things he thinks about. He is always hungry! We have discovered that he really needs to eat a small meal with some of his meds or he will get sick. The thought of him vomiting this close to transplant makes me cringe!! Him thinking about food more than me is quite a change for us. I'm completely addicted to food. Thankfully, I don't suffer from any other forms of addiction...but my struggle with food is every but as real as a struggle with smoking or alcoholism. Food for me is emotional and physical. I turn to food for a variety of emotions and trying to eliminate sugar feels like what I would imagine detoxing being like. Anyway, because of the medicines, Danny is hungrier than I am and the terrible and completely selfish part of me thinks that's nice for a change! I think this is probably the first time he has ever felt consumed with hunger in his life and I think it will cause him to be more compassionate with my food battles in the future once he's out of this hungry stage. 

Danny's face is getting puffier. He doesn't like it at all but I think he's as handsome as ever. 

Facial puffiness timeline #1

#2

#3

#4

We are going to write to the donor family tomorrow. Finding the words that best express how thankful and blessed we are in the midst of their sorrow will be tough, but I'm looking forward to trying! 

On January 1, many LVAD patients (along with many other Americans) lost their health insurance. The medical costs associated with an LVAD are staggering, not to mention the thought of being on a heart transplant list without insurance. I don't know how anyone could possibly pay for that. I'm not sure what Medicaid or Obamacare pays toward LVAD/transplant (if anything), but I know it's not as much as a reasonable private policy would pay. Danny and I gave his dressing change kits we had left over from when he still had the LVAD (about 2 months worth) to a woman who lost her insurance and she cried she was so appreciative. We are also donating his LVAD equipment to someone who won't be able to afford it anymore. We need to never forget to count every single blessing we have because there are people all around us who have so many more needs than we do. I take three medicines every month and the highest copay I've ever had to pay was $25.00. I refilled one the other day and it was more than $45.00. I thought geez...that's just one medicine and I have insurance! 

~Tricia 

Pad Choice

Life post heart transplant is all about getting used to medicines. There are a lot. Danny takes them at 8:00, 10:00, 12:00, 6:00, 8:00, and 10:00. It's pretty hard to remember all of those times so we decided to make a time list and hang it above the medicine section. I feel like I'm a pharmacist when I'm pulling all the meds and it's pretty fun! At 8:00 am and 8:00 pm, the pills fill up a medicine cup and Danny swallows them all at once with water. He's a medicine beast as the kids say these days... :-) 

Danny's meds under TV with med schedule hanging above. The blue card is a table of what and when to take. 

We have ventured out to a couple of restaurants and boy do the people stare at Danny wearing his mask! Honestly, it would be better if they would just ask why he's wearing it instead of gawking. 
I already had a pretty good sense of how most people with some sort of physical or mental disability or handicap want to be treated...but watching Danny adjust to life with a mask makes it even more real. People just want to be treated normally and most people like to talk about themselves. For instance, some time ago I was walking down the hall from the Brent House Hotel to the hospital when I passed a man walking slowly, wearing PJ's, and carrying some sort of black bag. I knew it wasn't an LVAD bag, but it was definitely something medical. So, being the curious and pretty direct person that I am (sometimes definitely a short-coming), I said "Hi...what's in your bag?" He seemed happy that I asked and told me about his recent kidney transplant. I walked with him to the hospital and it was really a pleasant conversation! I think that's probably how most people with something out of the norm going on would like to be treated...either don't stare/ignore, or show interest and ask. I think learning about different medical conditions is fascinating. Last night as I was doing some laundry in the hotel laundry room, I saw a woman who was very interesting and with whom I really wanted to strike up a conversation, but I chickened out either due to subconscious wisdom or just fear. She is of the religion/culture that wears the head covering and long black "dress" where the only skin visible is a slit for the eyes. As I was walking to the laundry room, I saw her sitting on a bench with her son in a baby carriage. While I was in the laundry room, she came in, saw me, checked the clothes in the dryer, and then quickly left. A little while later her husband (I assume) came in to get the clothes from the dryer. I desperately wanted to talk to her and learn about her religion/culture/life. We made eye contact when she was in the laundry room for a moment and her big, brown eyes were beautiful. I think it would be fascinating to get to know someone with such different religious and cultural beliefs. I was worried that talking to her might be offensive and I didn't want that. 

Maggie and Charlie stayed with us Thursday and Friday night and it was great to have them here. We went to a small restaurant (at a non-peak time--important to try to stay away from crowds) and had what felt like an emergency at the time. Things were going fine and then Danny said "something's wrong, I'm leaking, I'm wet, my shirt is soaked!" I went in to "fix this" mode and instructed the kids to get ready to leave and wait in the car. Without thinking, Danny stood up to leave and began to fall. Without thinking again, he caught himself on the table, which is a bad move because he's on sternal precautions for at least 6 weeks I believe. The sternal precautions are no pushing or pulling, no lifting over 5 lbs, and no raising arms over the head. Catching himself to prevent a fall is definitely not following those guidelines! I helped him back into the chair and helped him calm down. He wasn't hysterical...but was getting close. He was shaking badly and very stressed because it seemed like maybe his chest incision had come open to allow fluid to come out. I helped him to the car and drove back to the hotel. He laid the seat back to the fully reclined position for the ride because it relieved some of the chest pain...which leads me to my painful mistake. As I was helping him get out of the car, I thought that moving the seat back up would be helpful...nope! When I pulled up the lever to move the seat up, the seat went down instead, which jerked Danny even lower. The pain was unbelievable...sternal precautions strike 2! We finally got back to the room and we worked up the courage to pull up his shirt, which was drenched by this time. 

Wet shirt from chest fluid

Pretty thick gauze pad soaked through

Fluid draining out of the incision

Thankfully, all incisions appeared to be intact. The fluid was/is coming out of the bottom of the sternal incision when he sits up or walks. I called the clinic and told her about the leaking, but forgot to tell her about the two accidents and subsequent chest pain. At first, she just said to try to keep the area covered with some gauze and to keep an eye on it, but then she called back and wanted to see him. Staying in the Brent House is such a blessing because from our room to the clinic is about a 5 minute (indoor) walk. The nurse wasn't happy with the amount of drainage and called the surgical team to come take a look. The surgeon that did Danny's LVAD, but was (sadly) out of town the day of the transplant, came to the clinic to check the drainage. It was so great to see him! He briefly considered putting in a small drain at the leak site, but decided against that. He said to just keep doing what we are doing (catching the drainage with gauze) is fine. He was more concerned about the sternum because he felt some grinding when he had Danny cough. He ordered a CT scan, but we haven't heard any results from that. I asked the surgeon if there was a problem would be be fixing it, and he laughed and said "no, the guy who did the transplant would fix it!" They are partners, and both very good at what they do, but definitely have different techniques. Surgeon #1 (LVAD) used 2 chest tubes and stitched closed the chest tube incisions upon tube removal. Surgeon #2 (transplant) used 5 chest tubes and prefers to allow the holes to close on their own from the inside without stitches. Apparently both techniques are considered proper, but to be quite honest, I think the 5 chest tube method is thought to be a bit excessive around here. Every nurse and doctor commented about having 5 chest tubes when Danny still had them in and the surgeon #1, Danny, and I had a good laugh about how Danny looked like an octopus. Personally (and I think I speak for Danny too), I prefer the holes to be stitched shut. However, the transplant was completely successful and Danny is doing well so far...so we are not about to complain about something as trivial as chest tube holes!!!! 

The nurse suggested that we use maxi pads to put over his chest incision to catch the fluid. She said they're the right size and shape, absorb a lot of fluid, and would be an easy way to try to keep track of about how much fluid is draining. Danny didn't say anything to her but when she left he made a pretty funny face...I don't think he's going to go that route!! I suggested that nursing pads are also very absorbable! This will be something we will laugh at for years to come I suspect... 

Patiently waiting for CT scan orders Friday. The heart pillow for splinting purposes is invaluable during the painful recovery!

Today Danny is still draining fluid from his incision. A little whole ago I helped him sit up and it began squirting out like a hose. He screamed "Tricia, I'm peeing out of my chest!!!" It's pretty bizarre and we have no idea if it's okay...but it is funny looking!

Chest fluid squirting out...amazing!!

Chest fluid squirted out onto his pants and the towel!!

Warning...Personal details ahead so skip this paragraph if you choose :-)... After talking about the chest fluid a little, I realized it might be similar to the pressure from engorged breasts while nursing. Our first baby was born with an unexpected heart defect (unbelievable coincidence) and died 25 hours after birth. That was during a time when the medicine used to "dry-up" milk was not thought to be safe, so my milk came in the night before Daniel Jr's funeral. It was so incredible painful because my doctor told me not to express the milk because that would signal my body to produce more. I had to wrap my chest tightly with an ace bandage to help stop the milk. My breasts were so engorged, they were like huge, square bricks. The only relief I had was to stand in a hot shower and let the heat from the water naturally express some of the milk. Even a little less milk was a huge relief in painful pressure. Danny and I decided to try the same thing with his chest. I helped him in the shower and when he bent over a little, fluid shot out of his incision half way the length of the tub. It was amazing. As more fluid came out, Danny was surprised to discover that it was easier to breathe...He didn't even realize he was having some shortness of breath. I applied some pressure to his lower abdomen and sides to help get some of the pressure out and he pushed with his abdominal muscles. We did that for a few minutes, until it slowed down some and he became very tired. He's back in the bed now, the painful pressure is a little better, and it's easier to breathe. I also shaved his beard and moustache for him and wow!!!! He looks as cute and handsome as he did when I fell in love with him in high school :-) He hasn't shaved since the transplant, which was 18 days ago...I forgot how great he looks when he's hairless!! Danny did say that after he laid down it became a little harder to breathe...that's the fluid settling back down around his lungs as he lies
horizontally. 

Hairless, slightly puffy face...less fluid after shower

Hairy, but still handsome!!

Something very funny happened the other day. Danny got some jeans for Christmas that have some growing room. The next day I gave him some slim cut, smaller sized jeans to wear and they were a bit tight. He commented on his jeans being tight, his puffy face, and overall weight gain throughout the day and it was apparent he was worried about weight gain. I kept telling him that with the amount of Prednisone and other steroid-based drugs he's on, it's an absolute guarantee that he will "fill out" and that everything is ok and he looks great. That didn't seem to help him feel better and I didn't realize what he was thinking until he said "my jeans are just so much tighter than yesterday. It can't be healthy to gain this much weight overnight." I cracked up laughing because it was two different pairs of jeans, the first are two sizes larger than the second. He was so relieved and we had a good laugh together. However, he's still not very happy with weight gain. I'm going to take frequent pictures of his face to have a visual timeline of increased puffiness. 

Danny just started laughing and said "are you excited to sleep tonight and I can chest pee on you!?1?" :-) 

He's amazed at how constantly hungry he is now (due to steroids). He told me the other day that he doesn't ever remember feeling the feeling of hunger before. Prior to this, Danny could easily go all day without thinking of food. He eats because it's the appropriate time and because he's with other people. That's certainly not a problem I've ever had!! 

I was pretty neutral about the Saints prior to "living" in New Orleans for much of the last four months. However, the people here are passionate about their team. I thought LSU fans were serious...but these New Orleans people are super serious!!! It's hard not to catch the Saints fever and I've had fun watching the games with Danny and then discussing the games with the hospital staff. Today's playoff game against the Eagles was great!! Geaux Saints!! Another nice note about New Orleans...Driving down St. Charles street (the residential section closer to Tulane & Loyola and the zoo) at night during Christmas time is amazing. The houses are already beautiful, but you add the Christmas lights to them and they are breath-taking!! 

~T

Surprise Discharge

Well...the charge nurse came in this morning to tell us she thinks Danny will be discharged today. With no time to process the news, a social worker comes in (whom we have never met) and spends about a minute and a half giving us instructions in a dry, uncaring, unpleasant tone. Danny mentioned something a transplant coordinator had told us about communicating with the donor family and she quickly shut him down (not easy to do) and disagreed...then asked if we had any questions! Unbelievable. When she left we went to the nurse and asked for the other social worker to call us. The other one is usually LVAD and pre-transplant and this one is typically post transplant. But, we have a wonderful relationship with the first one and she told us long ago that we can request to keep her if we wished. Well, we wished and we received!! In this incredibly stressful, overwhelming, and scary four months that we have been at Ochsner, I think we have dealt with maybe 3-4 people we could have done without meeting. Everyone else has been an absolute delight and truly a blessing in so many ways. The people associated with the LVAD clinic are people who I truly miss and wish that we had a friendship with on a personal level outside of the hospital. The good news is that the transplant clinic and the LVAD clinic are in the same area, so we will see them routinely for a long time and less frequently for the rest of Danny's life! 

Danny almost fell apart with stress about being discharged today...we were prepared for Thursday. However, the transplant team reassured him, we have many direct-access phone numbers, and the hotel is down a hallway not too far from the current hospital room he is in!

On a sad note, he is scheduled to have his favorite meal tonight...as shocking as this may be, the hospital cafeteria food is not very good~even in New Orleans. We are considering hanging out in the hospital until after dinner. After you've been in the hospital for a while for a serious, life-changing event, the hospital becomes the comfort zone and it is truly scary to walk away. I've cried at every discharge. I don't know if that's normal or not, but it's definitely how we feel!!

I forgot to mention the one "issue" with his biopsy yesterday. After the surgeon feeds the tube through his carotid artery down to his heart, the nurse is supposed to flush the line. She didn't attach the flusher device properly so the water sprayed all over Danny inside the "tent" he was in. He laughed and thought it was a nice shower...remember he hasn't had one in over 2 months since the LVAD. The nurse was really embarrassed and said she had never done that before. Then, when she went to flush it again the water went all down Danny's back like a bath. They just laughed and decided it was something cooky with Danny and that lab.

I found out something I am so excited about I just can't hardly stand it. We get to see his old heart!!!!! We can touch it and hold it. One of the pathologists will set it up so Danny and I can go. The transplant coordinator said that his first heart was truly amazing looking. It's about the size of a dinner plate and it a grayish, greenish color. She said when you look at it it's hard to understand how he stayed alive as long as he did. I am so excited about this "field trip" that I have butterflies in my stomach!! This coordinator (who is one of the most positive, uplifting, and wonderful people ever) also told us that Danny's new heart could not have been a more perfect match in terms of size, age, strength, and of course blood/tissue type. We are praying that the donor family will want to meet us and also that we will feel content if they do not. They have given us such an amazing blessing. 

Here's Danny all ready to go...real clothes, no needles or wires anywhere. Stay tuned to see whether we stay for hospital lasagna or leave for cafeteria something else...Or, we could get in a car and go to a restaurant. Yaaaay!! He will have to wear a mask the whole time except when he is actually eating. I saw a little girl a while back downstairs who was wearing a mask decorated with bedazzled jewels...I sure did have a lot of fun decorating his driveline dressings with the LVAD. I need to find a way to express my creativity in a way that he will wear on his mask!!

Quick nap before leaving...Lasagna or not? Big decisions :-)

We will need a cart :)

Still Here continued...

Today reminds me of why I learned when this all started to blog in the evenings because things change so much during the day!!

They did take the chest tube out today...yaaaaayy!!! He was draining still, but they felt it was enough to remove the tube. Also, when he stands up and moves around the fluid will come out of the hole until it heals shut. So now the only needle or tube in him is the IV that's in his arm for protocol purposes...it's not connected to a medicine. 

We will probably get the biopsy results tomorrow, if the lab gets to it. They are swamped since Wednesday is a holiday. Danny also has to have a heart cath again before discharge. So, the word is that discharge will probably be on Thursday...assuming all is well with the biopsy and cath and subject to change, of course!! :-)

We talked with the transplant coordinator for a long time this afternoon about the realities of life post heart transplant. As far as his diet goes, he will eat a heart healthy diet, but he pretty much did that before. Beef must be well-done...no pink at all. He likes his steak cooked medium, so he will have to learn to change his taste! No grapefruit, in any form, ever. It counteracts one of the immunosuppressant medicines. That's it as far as food goes!

He will wear a mask outside of the hospital room, hotel room, or home once we are back in Baton Rouge for at least the first six months. Sick people should not intentionally come around Danny for at least six months also. Obviously the kids and I will be around him since we live with him, but we will try to stay in a different room of the house as much as possible when sick. We will need to keep hand sanitizer by the door for any visitors, and not go in crowded places at peak times. Mostly it's all common sense stuff. In time, he will be able to do all of the outdoor physical activities he enjoyed before end-stage heart failure and get back to a fairly normal life! We are very blessed indeed. We are going to write a thank you note to the donor family soon. We were instructed to do it with no expectations from them. Some donor families want no contact. For them, donating the organ is closure enough. Other families want to communicate, and some maintain a lifelong friendship. My personal prayer is that the donor family wants to meet us and maintain a relationship. Danny hasn't completely verbalized his deepest wish, other than how incredibly thankful he is. At any rate, once our letter is given to them, the ball is in their court. If they have decided that they do not want to hear from us, I assume the organ procurement agency would not even give them our note...and that's okay! It's been said that the best way to say thank you to a donor family is to take excellent care of the organ we have received we will certainly do that! 

Danny was so excited to get out of bed and strut his no chest tube and no wire self around the room...until the pain hit!! Then he crawled back into bed doubled over in agony. Poor thing. It will be a long recovery but one filled with lots of joy and hope for the future!! He even put on a real pair of pajamas instead of the hospital gown! When I took his picture I realized he does have a few wires, but they're all external so I didn't think of them. The wires poking out of his PJ top are for the telemetry thing (heart monitor) he has to wear as long as he's in the hospital. 

Still Here

Well...We got hopeful too soon. Danny's chest tube drained over 80 cc this morning between 3-9 am. The nurse was quite sure that it drained out when he got up to walk or use the restroom, but it actually was before he had gotten out of the bed for the morning. Wisdom said to not try to explain that to the nurse because this one isn't a great listener! Anyway, he has drained over 200 cc in the last 24 hours...it just wasn't obvious to the nurses who chart the amount in the computer because they are not all recording the amounts at the three routine times a day like they are supposed to be doing. A nurse from the surgical team came up this morning to verify that the tube was ready to be pulled and was not happy when she looked at the actual amount of fluid in the box compared to what had been charted in the computer. As much as we want the chest tube out because it hurts so badly, it's vital that as much fluid be drained out as possible. Though the tube (connector) is not fully clogged, it must be partly because of the way fluid is constantly sitting in the tube rather than draining out completely. The surgery nurse saw the logic in that immediately and agreed that it doesn't make sense at all for fluid to stay in a tube unless there is some sort of clog. I don't know of they are going to change out the tubing or not. First step is to get them to accurately chart the drainage! 

Danny was scheduled for his daily chest x-ray this morning...he has one every morning as long as he has a chest tube to check for proper placement and fluid levels. His limousine (stretcher..lol) came to get him and it wasn't the x-ray techs. Instead it was the cath lab nurses. The doctors changed his biopsy that was scheduled for tomorrow to this morning. We were surprised but both a little glad (me more than him I'm sure) because that doesn't allow Danny much time to stress out over the biopsy. Heart biopsies hurt even when done by an expert! Needless to say, he isn't going to be in a very cheerful mood the rest of the day and he will sleep. The pain and stress takes everything out of him...

I don't know if they're going to do a chest x-ray or not. Since the fluid amount prevents him from having the chest tube removed today, they might as well skip the x-ray today, but who knows!! 

I took a pic of Danny pulling his morning meds and them all spread out. Then, he takes more throughout the day. I'm scared to see what insurance will cover. The anti-rejection medicines can run up to about $3000 per day. That's scary!! 

Pulling meds

This is missing 3 medicines...

I need to figure out medicare...Other transplant patients have told us to get started on all of that because medicare covers the amount of the medicine that his primary insurance doesn't. ...but they are on disability too. Danny will be going back to work full time and doesn't need disability. Trying to understand all of that and knowing where to go to get correct answers is overwhelming. Definitely a matter or prayer because I know that the Lord is able to guide us in the right place!

Danny just back from the biopsy and it was much easier this time...Danny still had the same complication (PVC...I don't know what that is other than it's some type of shock or nerve issue when they take the biopsy) but a doctor did it who has done thousands so he knew to talk Danny through what would happen and what it would feel like, so it was much more tolerable. Danny requested that doctor for all future biopsies 
:-)

Looking good after the biopsy today! 

Probable Last Night in TSU

Being silly...

Having fun!

Danny's chest tube is only draining a small amount now, so we think he will be discharged tomorrow. Then we go to the Brenthouse Hotel (attached to Ochsner) for 6-8 weeks. 

The chest tube is hurting him a lot and I am so excited for how good he will feel once it's out! The chest tube has been doing something really weird today. The tube appears to be clogged because the fluid is visible in the top part of the tube, but after the connector piece there is no more drainage. So, the obvious conclusion is that the clog is in the connector piece. Well, it's not! The nurse took it apart today and flushed the connector with sterile saline water and the fluid is still not draining out of the top part of the tube (between his belly and the connector). Danny and I have decided that it's about pressure, not a clog. The chest tube is connected to a box that collects the chest fluid by using a water suction technique. If we squeeze on any part of the tubing, the pressure in his chest is horrible. If he breathes in our out with force, bubbles and fluid go up and down the tube...but only to the connector, and it hurts. If I put my ear to his belly near where the chest tube comes out, I can hear the fluid moving around. It sounds like a caffeinated beverage that's been shaken. He can feel the fluid fizzing around in there. I've tried to convince him to let me undo the top part of  the tubing from the connector and let it drain out onto a towel, but he won't let me. I think it's a great idea but he gets to decide since it's his chest tube!!!  I'm so excited to watch them pull out the chest tube tomorrow. 

I took a picture of the chest tube. You can see the top part of the tube, the connector, and the bottom part that attaches to the collection box. If you look closely, you may be able to see the fluid that's mysteriously stuck in the top part. It's really taking a lot of self-control to not pull that connector off and manually drain out that fluid!! I would definitely do it if it were my chest! 

Fluid stuck in the upper tube above the connector

The transplant coordinator explained the reasoning behind the chest tube to us the other day. It's really interesting. When Danny's first heart was incredibly enlarged, it pushed his lungs out of the way to make more space. Now that he has a small (normal size) heart, and no LVAD or pacemaker/defibrillator, there is a lot of empty space in his chest. Until the lungs re-expand to their normal size, his body produces fluid to fill up the empty space just because bodies don't like empty space. Pretty cool!! 

Finger dexterity therapy :-)

Looking Great!!! LVAD driveline exit site to (his) right of belly button. Other holes are chest tubes holes.

Some of the meals here are pretty funny!!

Thanks for reading the blog and for your prayers and comments. It's so encouraging to know that so many people are praying for us!

~Tricia

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 does...my 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 pain...so 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:

Paypal.com 

click on: Transfer, send someone money

email: helpdannysauer@gmail.com

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