Monday, September 8, 2014

Upset Stomach Still

Danny was discharged this past Friday after the GI and Infectious disease docs felt comfortable that they had ruled out or at least submitted the blood work for bacterial infections. They feel like it must be a virus that will need to run its course. The heart transplant team now believes Danny's body is rejecting one of the anti-rejection medicines. He has had some stomach problems each time they've increased the dose of this particular medicine, but nothing like what he has been experiencing the past few weeks. The onset of the severe diarrhea began about the same time he was completely weaned off of pain medicines. We didn't realize that connection until this past hospital stay. Apparently narcotic pain medicines have a natural side-effect of causing constipation, which counteracted the diarrhea. Crazy!!

The plan is to taper off of the Cellcept for a little while and then give him a huge dose when the doctors (more likely the clinical pharmacist) say it's time. They explained it to Danny like shocking a swimming pool with chlorine. They will try to shock his body into submission. I don't know what the plan would be if his body continues to reject (by getting rid of) the important. As far as I know, there isn't an alternative to this particular medicine. 

It's Tuesday night, and I don't see an improvement in his diarrhea yet. He appears weak and tired to me. I don't see how he isn't completely dehydrated. At one point he was told to take Metamucil, but he needs to call the nurse to find out how much to take. 

It's hard to watch him feel so yucky. He had blood work done today and I don't know the results yet other than he can go down a little bit more on the Prednisone. That's great because they want him completely off the Prednisone before doing the hernia surgery, which will hopefully be in December. 

Thursday, September 4, 2014

Not in Rejection

Great News....Danny's biopsy showed no rejection at all! The surgeon had trouble getting to the right spot during the biopsy and couldn't figure out why, so she ordered an x-ray. She discovered that his hernias (yes, plural) are pushing on his heart and moving it up some so she had to readjust her aim in the biopsy. Hernias pushing on his heart might explain the shortness of breath he has been having lately!! I don't know of a change in plans for dealing with the hernias...wait until closer to Christmas to do surgery so I'm out of work and hopefully Danny will be weaned off of Prednisone by then. Which leads me to the potential problem...the doctors (transplant team, GI team, Infectious Disease team) think that Danny either has a stomach virus or is having a bad reaction to the CellCept (lifetime immunosuppressant medicine). They believe they've ruled out a bacterial infection because nothing has showed up positive in the bloodwork so far. It could be a virus because he is so susceptible to catching anything. He could of caught a virus that I caught from one of my students and I didn't even feel a symptom. With a suppressed immune system, the smallest bug that he would normally never get sick from can make him extremely sick. Right now the GI doctors feel like its a virus and the transplant team think it's the medicine. The plan (as far as I know) is to treat it like its a medicine complication and switch some things around. I'm not sure what they will do since Cellcept is a necessary thing and increasing the doses of the lifetime anti-rejection meds coincides with decreasing the Prednisone (short term anti-rejection med). He definitely needs to continue weaning off of that so he can have his hernia surgery!! 

He was a little hopeful that he would be discharged today because the clinical pharmacist gave him a new blue card (table of meds/doses/times, etc...) to go home with. Sadly Danny isn't allowed to take any kind of medicine that would help diarrhea except for Metamucil (I know, that's for constipation...but apparently it works by bulking up the stool so in theory it should help). Meds like Pepto Bismol negatively interact with his transplant meds. 

Hopefully he will be able to come home tomorrow. Today is Maggie's 15th birthday! Last year Danny was in the hospital too, I think he had just gotten his LVAD. We had a birthday party for her in the hospital. Charlie's birthday is in December and we celebrated his in the hospital last year too! Looks like we'll do it again for Charlie since the hernia surgery is in December!!! Good thing my kids haven't ever gotten accustomed to big birthday parties with a bunch of friends!! 

I'm excited for Danny to get back home. I went to see him last night and it was like being back in our second home! We know the nurses and staff and it feels very comfortable there. I haven't decided if that's a good thing or not! Being apart from each other isn't easy. 

Thanks for praying! No rejection is definitely praise worthy!!!! 


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 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 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!