Tuesday, September 2, 2014

7 months since surgery

Its been a little over 6 months since the transplant and things are not what I expected at all. I know that sounds negative and I don't mean to be...I'm just trying to be transparent and honest with our experience. Danny and I both thought he would be feeling a lot better than he is and struggle with discouragement. 

When he was diagnosed with end stage heart failure and was hospitalized, Danny was extremely ill and felt a huge difference when the LVAD was put in. He felt like he could breathe again and noticed a big difference in his energy levels. However, that's not saying much because they put the LVAD in when it was either that or die. 

Life with an LVAD isn't exactly ideal. Emotionally it was very difficult, not to mention the hassle of plugging in and battery changes. We assumed that life after transplant would be far easier. We were told many times it would be difficult in that it's a life-changing event with many challenges. But you truly don't understand what that means until you walk through it! Don't misunderstand, Danny and I are both grateful for the transplant and are thankful for every day he has...just a little discouraged at the bumps he has had thus far in the recovery process. 

He has 3-4 incisional hernias. His incision goes from his sternum to the right of his belly button and the hernias are grouped together about 1-2 inches above his belly button. They are big and extremely painful. It looks like he has an alien growing and bulging out under his skin. Each time he is back in New Orleans they discuss the hernias and the hope is to wait until he is a year out from surgery to do the hernia repair. Waiting that long is to give his body more time to heal from the first three surgeries, and also time to finish weaning off of Prednisone. Prednisone is used as a short term anti-rejection medicine and he started on an extremely high dose and is now down to 4 mg/day. He also takes lifetime anti-rejection meds that are increased as the Prednisone is decreased. Coming off of Prednisone is wonderful because the side-effects of that are major puffiness and mood swings, but he is having a LOT of GI trouble with the increase of the longterm meds. This last week Danny has had severe diarrhea, which we attributed to the medicines. However, after some blood work came back the doctors said it showed some pretty disturbing signs of rejection and infection. So, next week they are going to do another biopsy to double check the possibility of rejection. They also said that if he has any more diarrhea he is to go to the ER (Ochsner) in Baton Rouge and they will be able to work with the team in New Orleans (hopefully). 

That was yesterday...today he is just having bad nausea. He has a temp of 99F and we are to call at 100F (how do you make a degrees symbol on a keyboard??). I'm also supposed to watch him like a hawk and if I see anything that scares me I'm to take him to the ER. 


Danny's latest appointment in New Orleans was this past Tuesday and this is the first time the doctors and nurses seemed as concerned as we have been about the hernias, so clearly they are getting worse. The plan is to do surgery in December, close to Christmas break for me. That way I miss as little work as possible and Danny has as much time as possible to be weaned off of Prednisone. I forgot to mention above that another side-effect of Prednisone is that it decreases the body's ability to heal...so that's not a good combo with surgery and being on such high doses before probably aided in the incisional hernias in the first place. 

We are not looking forward to another invasive surgery, but on the other hand, these hernias are pretty disturbing. When you run your finger down his incision you can feel the rope-like scar until you get to the hernias. There it feels like a crater from the wound opening back up, and then it goes back to the rope. It's so weird looking but sometimes we have a good laugh! 

Four weeks ago Danny went back to work. I'm not sure if he realizes it but he was so scared to return for fear of failure. It has been tiring, but manageable. He has had a couple of days that were bad and he worked from home, but usually he goes to the office. His work continues to be the most amazing employer possible. I've never seen or heard of a more supportive and genuinely caring work place. Danny is a software developer and was worried that he wouldn't be able to perform up to par because of how he sometimes still feels like he has a "mushy" brain, but it's been fine. It has been good for Danny to be out of the house most days and to get back to work. I'm sure what he does now is not quite the same as his performance prior to transplant, but really most things in his life have changed in the last year or so. He's done fine though, he has solved some programming problems, met with a client or two, and has felt like a contributing member of his job again! 

Once we are past the surgical complications (hernia repair in December), hopefully he will start to feel great again. I doubt he can even really remember what feeling great feels like. This has definitely been a long year! 

On a different note, I just finished my 3rd week of school. I have a great class and an incredible new principal! Maggie donated her turtles to my class and last Monday I got to work and thought I had killed them. The smell was horrid and all I saw was thick greenish water and lumps of mushy stuff along the wall of the tank. I thought I had killed them, but while dumping the tank out, we found them still alive! It was a really traumatic experience and one I definitely don't want to repeat! Currently the turtles are living in the kid's bathroom because I broke the tank accidentally. I'm pretty excited to get another tank and bring the turtles back to school. 

I've been writing this post for a couple of days off and on so there are a few updates since I began. I have a new tank for the turtles in my classroom (thanks Dad!!) and they are super happy!

Danny was admitted to the hospital in New Orleans today. His initial bloodwork today didn't look great and they did a traditional biopsy (through his neck to the heart) so compare results with the bloodwork biopsy. He definitely has some infection going on with the constant diarrhea for a week and is also bound to be dehydrated. They will get the results of the biopsy and all bloodwork tomorrow, so we will know more of the plan then. Danny wants me to stay in Baton Rouge so I can work and be with kids at night. He said that after he talks to doctors tomorrow and knows the issues and the plan, he will re-evaluate what he wants me to do. It's really hard having him in New Orleans with some potentially serious complications/problems happening and not be there with him. 

Tonight Maggie told me that as hard as last school year was for her with me not being home so much, she wanted me to be with Daddy if it helped him feel better and that she would be okay. How awesome is it that she is so selfless! 

I'm definitely anxious to hear from him tomorrow. 

On the home front...Charlie was fouled pretty badly (and intentionally) in his last game. The player tripped him, kicked him in the achilles tendon, and then stepped on the side of his ankle after he was on the ground. Thankfully his ankle isn't broken, but it is a really bad sprain and the doctor said his tendon looked bad and he's lucky it wasn't broken. Charlie has to wear this tight, lace-up boot support ankle thing and he hates it because it hurts so badly! It hurts badly without the ankle support too. He can't play soccer for at least a week and a half according to the doctor. 

Maggie has an outer ear infection, and thankfully mom was here this past weekend and was able to diagnosis here and I had the antibiotic ear drops on hand Maggie needs. 

I'll blog again after I have news tomorrow!

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