Friday, April 10, 2015

The Good, The Bad, The Ugly

The Good:
It's been about 16 months since Danny's heart transplant and about 3 months since his incisional hernia repair. All incisions are healed with no further complications. He recognizes that he is getting stronger and is able to do more and more. Danny works from the office more than he works from home now. He has not had rejection and all looks good from the doctor's perspective with a few minor issues...The transplanted heart came with a small amount of blockage in the artery so they are watching the possible increase in that closely (so far no change). They've switched him to a different immunosuppressant (one of the ones he will take forever) that works better with blockage for whatever reason. The negative side of this new medicine is that it inhibits healing...so injuries will be harder to heal from. But, that's not really a big deal in the grand scheme of this whole thing. Overall, everything is just fine!

The Bad: 
The 2 immunosuppressants he will take forever have some really hard side-effects that are worse for some more than others. Danny is a worse one! The meds cause him to have severe, uncontrollable, and rapid onset of diarrhea. Danny will feel better for 2-3 days and then feel like he can't be far from the bathroom for a couple of days. He was really hoping that the GI symptoms were caused by the incisional hernia even though he was told there was no connection (wishful thinking doesn't hurt I guess!) and has had a really hard time coping with the reality that he could have these negative side-effects forever since these are forever medicines. 

Danny has new insurance through his work (having insurance through work definitely goes in the GOOD category!) and it has been a tough transition. The most recent issue was when his newly assigned "case manager" called him to tell him about the side effects he will have with his medicines and also to let him know that he has an expected life-span of 8 years from now. Danny is already struggling emotionally with all of this and that didn't help. I won't spend anymore time writing about that lady...I'm sure our feelings about her phone call are the same as anyone reading this!!

The Good:

  • Better to be alive with bathroom troubles than not alive.
  • God can heal Danny from head to toe...make his new heart perfect, make side-effects go away, whatever! God can even completely heal Danny's body so that he doesn't even need immunosuppressant medicines. All of that is easy for The Lord, and that's definitely good! 
The Ugly:
I started this blog to have an easy way to keep family and friends updated in an easy way. I had no idea it would be so cathartic for me and I certainly had no idea so many people would read. Now that I know these things, I keep writing because it helps me feel better, but it's also a way to prayer requests out to a lot of people who will pray...and the power of prayer is...powerful! (lol) I said all of that because I don't want people to feel sorry for us. I hear people say how hard this all is for us and how strong we are. That's not it. I"m not strong. Today has been so hard that I'd like to get in the fetal position and cry. Not strong. But that's okay because it's in my weakness that God is strong. Better said: in my weakest places is when I feel God's strength the most because I need it the most and so I recognize it. It's not that God is only strong when I am weak...He's always strong. It's that I forget that I need His strength when I'm not weak. So, the truth is that I'm thankful when I'm in a place of weakness because I never want to forget how strong He is and that I need His strength instead of mine. That's the ugly transparent reality of me and a lot of us I bet, since we are human after all. To recap...I blog and try to be as real and honest as possible because I need your prayers. 

I am so tired. Teaching is a hard job. I really had no idea how hard it would be. I'm blessed with a fair, encouraging, and supportive principal this year and hopefully for many years to come, but that doesn't make the workload less. It's really unbelievable how many hours teachers work and then are still not caught up. 

I am so tired. Parenting is so hard! Maggie and Charlie are absolutely amazing and I literally thank God every day for them. I just love them so much it makes me feel like my heart will jump out of my chest. But boy, parenting is hard! To watch them struggle is so painful. I want to fix everything for them but can't, and even if I could I shouldn't because they'd never learn from their mistakes that way. Both kids are struggling with all that goes into a dad who has had a heart transplant. Charlie's struggles come out as stress, anxiety, fear, sometimes anger. Maggie's struggles show up through her school work (It's interesting how two siblings can be so different). I could spend a lifetime saying Why God?? But on the other hand I don't need to because I know that it's through trials that we grow closer to Him and are therefore molded into the image of Christ more and more. Isn't that what we want for ourselves and our children? The problem with parenting is that I can't make Maggie or Charlie use these trials to draw them closer to the Lord. That's why they're struggling...God is trying to draw them even closer to Him. Can I kick them, shove them?? As parents we can teach our kids and pray with and for our kids, but at some point they have to develop their relationship with the Lord on their own. My relationship with the Lord isn't theirs to share. They have to have their own. This isn't about their salvation. John 3:16-18 says "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him. Whoever believes in him is not condemned, but whoever does not believe is condemned already, because he has not believed in the name of the only Son of God". Assuming they are saved, Maggie and Charlie can be nearer to or farther away from the Lord depending on how much they put into the relationship. That's the way it is for all relationships and to me it's no different with the Lord. When we give God time through reading the Bible, praying, singing, etc...we draw closer to Him. The Holy Spirit who lives in us rises up and feels more alive. When we neglect time with the Lord, we draw away from Him and the Holy Spirit shrivels (at least that's how it feels to me). God never leaves us or forgets about us, we forget about him. We neglect him. So that's why parenting is hard. I can't make Maggie or Charlie draw closer to the Lord. I can teach them how, I can be an example, and I can pray for them. But I can't do it for them. And that's hard. 

I am so tired. Being a caretaker is hard. Being a wife is hard, but I've found that it's even more so with a sick husband. The thing is that Danny isn't "sick" anymore. He has a new heart that is working just fine and his cuts and scrapes and bruises are all healed up. But, he still hurts, feels old, and has major bathroom issues. It's so hard to have the words to say "let's get up and live life" without sounding uncaring about the very real struggles he faces. I don't know how many more years Danny has. I hope it's at least 40. But, I do know I don't want to waste any of them being upset or sad about the negatives associated with transplant. I want to rejoice and be glad! I want to celebrate life! I want to enjoy our children while they are still at home! I want to learn how to ballroom dance with Danny. I want to take walks and have picnics. I want to laugh and be silly. I want to enjoy the sunshine and the rain. I just want peace and joy, and I want that for Danny too. I'm worried he believes that nurse lady who told him he will probably die in 8 years. She is not the one who determines his days. Pray with me that Danny will fight his discouragement and fear. Pray we me that the Lord will strengthen Danny and give him hope and joy. Pray for all of us that we are each drawn to the Lord closer and closer because all of these really painful struggles we've walked and are still walking through are worthless unless we run to the Lord as fast as we can and allow him to be our rock, our friend, our strength, our comforter, our champion fighter, our loving father. Lord, help me to teach my children by example instead of words. And Lord forgive me for forgetting you and trying to rely on my own strength. Sharpen us through this fire so that our lives honor you. Make all of this a testimony of your goodness and your faithfulness. 

Songs on my heart right now:

Draw me Lord
Draw me Lord 
Oh Draw me Lord 
And I'll run after you

and...

You are the strength when I am weak 
You are the treasure that I seek
You are my all in all

Seeking You as a precious jewel
Lord to give up I'd be a fool
You are my all in all

Taking my sin, my cross, my shame
Rising up again, I bless Your name
You are my all in all

When I fall down You pick me up
When I am dry You fill my cup
You are my all in all

Jesus, Lamb of God
Worthy is Your name
Jesus, Lamb of God
Worthy is Your name

~Tricia



Thursday, January 22, 2015

Last Chance

Abdominal wrap to keep the hernia repair nice and secure.

Pads between the abdominal wrap and the incisions.

Small incisions on the outside of where the hernia was. It was through these small holes that the doctor sewed the mesh patch to muscle. The pain isn't from the incisions. It's on the inside from the mesh and the stitching to muscle tissue. Ouch!!!

Danny was never able to urinate on his own yesterday so they had to put in another catheter last night. The residents always round super early in the mornings and then they come back with their lead doctor later. The resident said there are two options...1. Catheter comes out this morning and he successfully urinates on his own. 2. Catheter comes out this morning but he still isn't able to urinate. In that case, Danny would go home with the catheter, keep it in for a week, and then see a urologist. We are definitely praying for option #1!! 

The resident also mentioned switching to oral pain meds and Danny got pretty upset. He is scared to switch back to oral because so far the pump has been the only thing that has kept the pain under control. However, oral meds stay in the body longer...The transplant team finally found a good combination of long and short acting pain meds after his last major surgery and it would be nice if the general surgery doctor would just listen to what works and go with that. I'm not sure if it's that easy. I'm anxious for the surgeon to make rounds so we know for sure what's happening today.


On the LVAD and transplant floors there are many more precautions that are followed than this general surgery floor. For example, on the LVAD and transplant floors, an IV can only stay in a maximum of 2 days before it has to be switched to a new location. This is for infection prevention. Danny's current IV has been in since Tuesday morning and his hand is swelling and is starting to bleed where the needle goes in. He asked the nurse if they were going to move the IV and she seemed very surprised he would request that. It's clearly getting worse though and at some point I think the current vein would blow out. 



~T

Wednesday, January 21, 2015

This was unexpected

Danny's first words of the day:
"This (amount of pain) was unexpected...I wasn't prepared."
I had to laugh because there is not one thing about sewing a patch to a lot of my abdominal muscles that sounds easy to deal with! Danny has been known, on many occasions, to explain to the kids and I that our pain can be controlled/managed by putting it out of our mind. So today I took advantage of his "painful situation" to ask him to agree to never tell us that again and he agreed. I hope he remembers our deal when he's feeling good again!! 

Because the medicines so far haven't been able to manage his pain, Danny was put on a PCA pump...that's the pain pump that gives him medicine through an IV when he presses the button. With the pump comes a sensor that monitors CO2 to make sure the patient is still breathing I guess. Anyway, here's a little video of Danny sleeping...LOL

Danny is in a semi-private room because that's what is automatically done for the general surgery patients, I guess. As an LVAD and transplant patient, Danny has always had a private room for germ control since he's immuno-suppressed. The other guy's family was here a long time last night coughing, using the (shared) bathroom a lot and even pushing that guy's tray, WITH HIS URINAL on it into Danny's half of the room. A part of the door curtain had been left open by the nurse when she ran in to help the guy get up. He was walking around the room in his underwear and fell. I asked the nurse (in a quiet voice so as to not possibly offend the other patient or his family) if it was normal protocol to have an immuno-suppressed, transplant patient to share a room with another patient. She said "well this is a semi-private room so it is what it is." Because we still didn't feel quite certain that the circumstances were what is best for Danny's care, I emailed his transplant nurse who personally follows his care closely. Then the other patient's friends came to visit, who all used the patient bathroom and to make things more exciting, they had a long, loud conversation comparing their DWI's. No, I'm not joking. Finally they left and Danny and I tried to get some sleep...nope! His pain was so bad that he couldn't sleep. Also, he hadn't gone to the bathroom since 9:00 am yesterday morning and after hours of trying to use the urinal, the nurse catheterized him. Never a fun thing! 

This morning was when it got crazy. The other guy's doctor came in and went into his curtain/door. They were talking about the guy's staph infection on his leg and that he will have to go home on antibiotics and a wound vac because it's still draining. Yep, that's right my husband with a suppressed immune system is sharing a room with a dude with a staph infection. I realize that his infection won't jump off his leg and fly through the air onto Danny's body....but that's not the point. It's still a risk. The kids and I wear masks around Danny if we are sick because we know he's very susceptible to getting sick. 

After Danny and I talk some, and we get input from our parents, we decided that I would walk over to the cardiac area and talk to Danny's transplant nurse. She said that everything is probably ok with infection, but they always prefer their patients to be in private rooms because the risk is too great. She said she would talk to the cardiac doctors and asked us to talk to the charge nurse. When I got back to the room, Danny called and asked to speak to the charge nurse. I explained our concerns about sick family members visiting and sharing a bathroom/room with someone who has a staph infection. She said she understood our concerns and wanted to know if I wanted a bedside commode or if I'm requesting a private room. I felt very uncomfortable and almost like a snob for wanting a private room. However, I mustered up the courage and said yes, I would prefer that Danny  have a private room. She said that private rooms are very scarce but she would see what she can do. 

Hours later we hadn't heard anything from the charge nurse. A patient care advocate happened to come in on a routine visit to tell us about his patient rights and how to contact them if we have a complaint or problem. Danny asked me to tell the advocate about the whole situation and we went out into the hall to talk. That wasn't fun because the nurses can see me obviously complaining to the guy. Not long after, the transplant doctor on call came to visit Danny and was so upset about the whole thing. She said that it's stupid to put a transplant patient in a hospital room with another patient with who knows what diseases. She also asked us to contact the patient advocacy people because apparently transplant patients getting private rooms on the general surgery floor is an ongoing battle. 

The guy next curtain was discharged and his half of the room and the bathroom were both cleaned. The charge nurse who is here now is trying to find a private room...but they are scarce. So at this point, I think we have done all we can do. 

The good news is that Danny's pain is finally controlled with the PCA pump. The bad news is that he can't go home with the pump and will have to be weaned off to oral pain meds. That process historically has taken Danny a couple of days so we will be here longer than expected. 

He has until 6:00 pm to go to the bathroom on his own or the nurse has to put in another catheter. I forgot to mention this part earlier, the catheter was pulled out this morning to give him the day to "try to make something happen, " according to the doctor. Danny has been trying to pee all day with no success so far. It's 3:00 now, so he has 3 more hours to get that urinary system going! 

~T

Catheter

The last time Danny urinated was right before he was admitted yesterday morning at 9:00. He has been trying to pee for the last couple of hours with no success. The nurse just put a catheter in and he's relieved that now he only has "one thing to worry about". He's asked several times why his belly hurts so badly and I've explained the process of sewing a mesh patch to the muscle tissue...sounds painful to me!! His nurse just told us that surgeries in the belly area always seem to be the most painful for patients. She said that in terms of fractured or broken bones, ankles are the most painful. 

He's finally sleeping so I'll try to sleep too. The couch beds are much more comfy on the LVAD and transplant floors!! General surgery is for the birds....

~T

Tuesday, January 20, 2015

Hernia Repair Surgery is Over!

The hernia repair surgery went well. Danny was in recovery for a couple of hours and is now in a room. Unlike all the other times he has stayed in this hospital, this is a semi-private room. The other patient and his family are loud and have been comparing DWI stories. The patient is walking around in his underwear and they keep pushing his tray with his urinal on it into Danny's half of the room. Each patient has a curtain to act as a door and I can tell you it's not much of a door!!!! They are coughing a lot and the germs are freaking me out and I'm not a germaphobe by any means...we have been trained to be careful around sick people with Danny since transplant. I'm just not sure how this room is beneficial to his health!

The left tray is the other patient's...urinal and all. Gross!



On another note, Danny's pain has been at a 10 since surgery and it seems like the most recent pain medicine has helped some because he is finally sleeping. 

This is his description of the pain: 

~~It's like someone is sawing through his body starting at the layer right under his skin. The sawing never gets to the point where the cut goes all the way through though. Instead, it remains at the point where the saw teeth are trying to grind through the abdominal muscles. Anytime he moves his torso at all, the pain shoots up from a 10 to a 50.  

The surgeon said he put the mesh up over the bottom of Danny's ribs to make it harder for the hernia to come back out of the top. The mesh is sewed (tacked) down along the sides and bottom and the top left and right corners. I think I said before that the problem is that he couldn't tack the mesh down properly along the top of the hernia because he can't sew into rib bone! There's a 20-40% change of the hernia coming back but even if it does, it could be so minor that it wouldn't require repair. 

That leads me to the specific prayer requests:

  • Pain under control quickly
  • Quick healing and recovery
  • Discharge tomorrow
  • Hernia never returns
  • Peace and strengthened faith for Maggie and Charlie
  • Finances
Thank you for reading and praying for us!!

~Tricia 

Monday, January 19, 2015

Incisional hernia surgery

Yes I know, it's been a looooong time since I've updated the blog and I'm sorry. If there had been something new to report I would have! Our family has had a rocky road since transplant for sure, but Danny still has no serious sign of rejection, so it feels ungrateful to even bring up the troubles. On the other hand, I know there are people who care and want to know how to pray...so here goes! There are two significant complications that Danny has had so far. The first is an incisional hernia, which he developed after transplant. 

It started as just a few small ones, but now appears to be one huge hernia! It's very painful and Danny is quite relieved that the transplant team cleared him for surgery finally. He wanted to have it repaired around Thanksgiving, but the team wouldn't clear him until after his year from transplant anniversary testing and results came back okay. The hernia repair surgery is tomorrow (2/20/15) at 11:00 at our home away from home hospital in New Orleans. That leads me to complication #2. Danny's body does not like (tries to reject) one of the anti-rejection meds he will take for the rest of his life. The doctors have already switched the med to the other option to see if his body accepted it better, but the side-effects didn't change much. The medicine causes extreme, uncontrollable diarrhea. When Danny is working out of the New Orleans office, there are many days (routine actually) when he has to stop at every exit between Baton Rouge and New Orleans to go to the bathroom. Some nights he cannot even make it from our bed to the bathroom. That's a really hard thing...it's physically painful but also emotionally painful I'm sure. Danny has convinced himself that the diarrhea is caused by the hernia and therefore will go away after the surgery tomorrow, but I really don't think that's the case. The doctors and nurses have all told him it's the medicine and his lab work verifies that. However, I'm sure most of us use denial or the "head in the sand" tactic to cope with hard things from time to time. A few days ago I asked Danny what he was going to do if he is wrong and the repair surgery doesn't solve the diarrhea issue and he said that he will just deal with that if and when it's the case. I just don't want him to live the rest of his life being sad about the complications when he could be celebrating his new heart. It's a hard balance to be the supporter and encourage him when he's feeling down while also reminding him that there is joy to be found in all this. There are blessings. The same lesson is for me. People often ask how Danny is doing and it's such a hard question! The answer I assume most people want to hear is that he is doing and feeling great. And if all that's being considered is how his new heart is doing, then it's a truthful answer. However, it's super hard to ignore the negative side-effects he's had. Are we ungrateful? Are we taking this precious gift of a healthy heart and being unappreciative? That's how I feel when I give an honest answer about how Danny is doing. That's why blogging has become hard...I feel like such a complaining jerk. We've been so blessed and we need to focus on that instead of the complications. It's hard! 

Danny has new insurance through his work and it's "comparable" to the previous policy...comparable for healthy people! Though he technically doesn't have a deductible as long as he uses in-network physicians and hospitals, he now has huge co-pays for outpatient hospital procedures and radiology stuff like x-rays and CT scans. Danny has radiology testing on a very routine basis and outpatient procedures fairly often also. These co pays are large enough and impact the budget enough that I'm going to begin looking for a second job. If my excess weight came off in direct proportion to the amount of hours I work, I wouldn't be overweight at all!! LOL...wish it were that easy. 

So to do a quick recap of prayer requests...

  • Hernia surgery successful and without complications
  • Diarrhea gone!!!
  • Money/Tricia 2nd job
Thank you for praying for us! I'll update tomorrow with surgery updates!

~Tricia

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.