Emotions

Yesterday and today (so far) have been fairly emotional for me. Yesterday, a pastor and a member of a church of which we don't belong came to visit and pray with us. To drive to New Orleans for people they don't know is such an expression of God's love and I am humbled and overwhelmed! 

When Danny had the LVAD, we had direct contact (direct phone numbers) to the doctors and nurses on call. Both Danny and I were in the clinic on a regular basis and the staff was very involved with how he was doing and feeling. They also placed a lot of emphasis on the role of the caregiver and therefore included me in all discussions and visits. A large emphasis was put in the area of social work because the pressure on an LVAD patient and his/her caregiver is enormous. The social workers were incredible and both Danny and I truly appreciated the wonderful conversations we had. She cared about how Danny was doing, but also cared about me. We were spoiled...The team of doctors is the same now that Danny has had a transplant, but the nurses and coordinators are different ladies. Danny was discharged from the hospital (to the Brent House Hotel connected to Ochsner) on 12/31. If I'm not mistaken, he has been seen in the clinic one time since then…and that's when we called because fluid was squirting our of his chest incision. The nurse that is assigned to Danny's case while he's here in New Orleans does call him at least every couple of days--and sometimes daily to check on him. He does routine blood work in the lab at Ochsner, which the doctors and pharmacists follow closely and then the nurse calls to change medicines as needed.(which is often) We were told before being discharged about specific problems to call immediately for--to include if he feels anything that's not the same or just feels weird…He body can (and will according to them) reject at any point and any tiny change can indicate rejection. The nurses told me to be very aware of how he is acting/feeling because I will probably notice changes that he doesn't that may be an indicator of rejection. 

Again, totally spoiled. I've only met the nurse the one time he was in clinic. Danny has had pitting edema in his ankles and feet for a couple of days now and his blood pressure has been running higher than it should be. These are issues that would have been caught already when he had the LVAD because they spoke with both of us often and returned calls immediately  The truth is that the patient doesn't always give completely accurate information for whatever reason…which is why it's important to have the care giver present. Danny didn't call about the edema two days ago because even though he knew I was concerned, he wasn't. I had a minor melt down last night because his legs and feet were close to the same width from his knees to his toes--which is a LOT of fluid retention for Danny…he's a skinny man!! In his effort to "fix" my "meltdown", he paged the doctor on call (who was happy to hear from him.) She wasn't pleased with his edema and told him to call the clinic first thing this morning. He has left two messages from the nurse so far, and it's 11:31 and she still hasn't called back. I'm not feeling happy! Honestly, if it is so vital that we stay within 30 minutes of Ochsner for 6-8 weeks after transplant, why aren't we able to talk to the nurse when we feel there is a problem? 

If I'm honest, I'm feeling sad because I'm not intentionally included in his health care…by that I mean the nurse just talks to him on the phone (on her terms apparently) and doesn't see him in clinic when I would be with him. I"m sure that's because he is doing wonderfully (overall) and they don't need to see him. So I feel like maybe I'm feeling sorry for myself because I'm not included…shame on those LVAD people for making us both feel so special!!! :) Anyway, it's hard and I know it seems selfish, unimportant, etc… Also, LVAD's are meant to be a bridge to transplant meaning the idea is to only have an LVAD for months-a couple of years at most while waiting for transplant. A transplanted heart has a life span of longer than that so it makes sense that the level and type of care we receive would not be as intense and "special" as it was for an LVAD. It would be super hard for the staff to give that kind of attention to patients and their caregiver for a long term thing. Still…I'm sad! 

While I'm typing this, the nurse has called and Danny has asked many good questions. I'm excited for him to get off the phone and fill me in with the details. 

Details: 
Swollen legs and ankles: He is okay as long as in the morning when he wakes up the swelling is down some. If he wakes up and they are just as swollen, it's a negative and dangerous indicator that one of the immunosuppressants is not as a correct dosage. If the swelling persists over night, it indicates that blood vessels are bursting in his legs. But…that's not happening, so he's okay.

She said to remember that he's been through two major surgeries in the last four months and his body is all out of whack. The fluid will figure out were it's supposed to be at some point. 

Blood pressure: The high BP is a result of a medicine that they were changing the doses for frequently…it takes a while to determine the best dose for each patient. According to blood work, they feel like they've found the best dose for Danny and therefore his BP should stabilize over the next couple of weeks. They may go ahead and give him a short term BP medicine to help him feel better quickly…they haven't decided yet. 

Going home plan: Depending on the biopsy next Tuesday and labs, we may be able to go home next week! They won't have all results back in until Thursday probably, so I wouldn't think he could leave New Orleans until Thursday or Friday at the earliest. Again…that is completely dependent on good results!! yaaaaaayy and scaaaary!! We know from experience that it's hard to leave the safety and comfort of being in the hospital. 

So, my concerns have been addressed and I feel better about that. And, it's okay (and good) that I have to lean on the Lord for my comfort when I'm scared and lonely--who needs nurses and social workers!!!! 

~T

Barber Day

Today began with labs and then a visit to the barber. This hospital & hotel feels like a small (very small) city…2 cafeterias, tons of vending machines, gift shop, pharmacy with shopping, barber, beauty salon, fitness center, PJ's coffee, art shows, live music…Today the labs went better than they have been because they only had to stick him once and no veins blew out. He decided to use his right arm today..he hasn't been using it because of the major bruising and pain he had. It;s taken almost 3 weeks for the bruising on that arm to get better.

Arm getting better!!

Nice haircut :-)

The medicines Danny's on are so powerful…the side-effects are unbelievable! He has severe mood swings, weight gain, fluid retention, extreme hunger, exhaustion, shaking (often difficult to get food into his mouth). His legs and arms feel like they are on fire from the inside and there's not a way to make that go away. That particular side-effect is from the Prednisone. In 18 years of being married, Danny has never once wanted massages but now his body hurts so badly that he would be happy if i never stopped! He was telling me yesterday that one part of the struggle he's having is the balance between being absolutely grateful for the gift of his new heart, but not always feeling "woo hoo!! happy" because of the amount of pain he's in. He feels like people will perceive him to be ungrateful to some extent if he is honest about how he feels physically. He can definitely tell a huge improvement in his heart function--breathing and chest pain--but I know he won't feel the full extent of the blessing that his new heart is until he is much more recovered from the transplant. The nurses and doctors tell him all the time that this is a marathon, not a race, and it will be a long recovery. 

So far, all biopsies have been negative, which is pretty amazing apparently. God is so good…and we know that He is answering the prayers of so many…THANK YOU FOR PRAYING!!! The doctors and nurses expect his body to reject at some point. It would be unheard of for it not to…I say lets pray about that too ! They also said that he needs to be prepared (mentally) to be in the hospital once a week for the rest of his life for rejection or other complications…wow…God can handle that too! How can someone prepare for that? That's not leading a normal life at all. 

Danny's blood work hasn't been right this past week and they have been changing the dose of one of the immune suppressants a lot. It can get to a toxic level in the body easily so they watch it carefully. The problem is that the results are not able to be seen in the bloodwork for about 2 weeks, so it's a lot of thinking and planning for the doctors and pharmacists. The immunosuppressants and Prednisone effect blood pressure, so that has to be monitored carefully also. He's not on BP medicines yet, but I think that's in the future. 

I know I've said this before, but writing this blog helps me to process and cope with information…so I repeat myself. A high concern for heart transplant patients is not necessarily related to heart problems, but all of the other problems that can result from a suppressed immune system. Various types of cancer, viruses, and other things. That's an area where we just really have to do what God says and take those thoughts and worries captive and trust Him with our fears. We must not worry about tomorrow, but rather be thankful for today. On hard days where things are just wrong…a good habit is to write a list of what we are thankful for. There are always blessings to be found. 

 He's "blossoming" is what the staff here says… :)

I was already "blossomed!!!!" 

Looking good-healing nicely!

Not happy to wake up for early
morning vitals and meds :)

I think his puffiness is cute, but he's not loving it!!

Trying to avoid a picture :)

   

The pharmacy downstairs sells a bunch of relaxing, lavender products and sets. I look at it all the time but never buy any because I'd rather buy stuff for Danny or the kids. Look what I got in the mail from my aunt!!! It's even from the same company in the pharmacy…yaaaay!! (Danny likes the heated neck wrap…I would have never imagined that!!) She also sent some tulips, which are beautiful! 

We've gotten gifts, cards, emails, prayers…we are so blessed by so many people. Thank you!!

~T

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