Unusual mail

Take a look at this letter we were hand delivered today...you don't get one of these everyday!! It's still unbelievable that this is happening.

August 30, 2013

It was suggested earlier in the week that we might go home today (Friday) as long as everything was stable and Danny felt OK. That didn't last long. The past few days Danny has been dry-heaving with intermittent actual vomiting. This is his body's way to try to get rid of the excess fluid that stays in his abdomen. Those that know Danny know that he is normally very thin and now he looks like he is a few months pregnant! No wonder he constantly complains how full he feels...We are back in the off and on cycle with Lasix. When he is on it, fluid drains quickly and after time his BP drops too low and he becomes nauseated...it also causes his kidney function to suffer. If the doctors cut back on the Lasix to help out the BP and kidney, he quickly builds up fluid again, therefore putting to much pressure on the heart and also making him nauseated. So, there's a very fine line about what to do with Lasix. We have doctors that are currently in their Fellowships working with the cardiologists and other doctors on the transplant/LVAD team. Sean, the Fellow that was on Danny's rotation when he was admitted on 8/9/13 was very easy to work with because he was such a good listener. That quality enabled him to quickly realize that to best treat Danny, he had to really pay attention to what Danny and I told him about symptoms and overall feelings. Test results just do not always give a completely accurate picture of what's going on with Danny. Wednesday was the last day for that Fellow rotation, so Thursday we got a new one--Conrad. That's hard for us because we felt so comfortable with Sean because of how he listened to our concerns and really included us in the process. Please pray that Conrad will deal with Danny in the same way. This afternoon, Conrad did come in and sit down and pick my brain about Danny's nausea, vomiting, fluid retention, etc...That was encouraging!

Yesterday I was trained in how to do his IV medicine and pump should Danny go home before surgery. Though it seemed pretty simple and I'm capable of doing it...it sure is scary!! That's the IV med he was off of for less than 10 minutes when he went into v fib and I don't want any part of that on my watch!! I'm not sure that he will be going home. The doctor asked Danny yesterday if he was OK staying here until surgery and Danny gave a relieved "YES!' He's scared and that certainly makes sense to me.

Since he was shocked by his defibrillator week before last ,Danny has been having nightmares reliving the shock. One night he was hit with water really hard in his chest, setting off his defibrillator and another night someone threw some type of big object through the window and hit him in the chest. It's interesting that (according to the psychologist that works with the transplant team) people who have been shocked by their defibrillators suffer symptoms that are comparable to PTSD. He is scared to fall asleep for fear of the nightmares. Even during the day Danny doesn't want me to leave the room. I imagine that as time passes since the shock the fears/nightmares will lessen, but until then I'm (happily and honored to be) glued to his side!

There aren't too many interesting pictures lately because he is either sleeping or stuck with his pink bucket, totally nauseated...I've got two of those pics, but I also took some of our home away from home!

The master bedroom wall...

 

The guest sleeper couch wall...

 

 

The living room with the big, flat screen wall...

 

 

Our front door and entry way...

 

 

 

Window view...Danny works for a wonderful company (Antares) and they sent him beautiful flowers. The flowers have since died but the sticks are now blooming!! The view outside is pretty grim, so we are enjoying watching our sticks grow...:) Danny has a dream to somehow make a rooftop garden out there. So many heart failure patients have to look at that roof each day and I can testify that it does not create an atmosphere of hope and joy!  Anyway, I'm sort of proud of my budding green thumb...maybe the secret for me is using only water instead of dirt!?!?

 

 

Current prayer requests: end to nausea/dry-heaving, wisdom and ears-to-hear for doctors, faith in God's perfect timing for donor heart/LVAD for Danny and I, peace and comfort for the kids, and whatever else The Lord leads you to pray. I wish I could personally thank each of you for your prayers...please know that we thank God each day for you!

 

~Tricia

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As you can imagine, the cost of a heart transplant is staggering. Should the Lord lead you to help us financially, our contact info at PayPal is helpdannysauer@gmail.com
 

 

 



August 28, 2013

Fluid is the word of the day...for two reasons. And just so you know, it's not a word I like much anymore! 

Danny started off  the day today exhausted but OK. The transplant team met and came to a loose consensus that Danny may be stable enough to go home Friday and wait on a donor heart from there. The plan du jour is to wait until the first week in October at which time they will do the LVAD. Are you confused by that timeline? Before today, the plan was mid-September for the mechanical assist device, and before that the plan was in about a week. That's what I mean by fluid: the plans are as fluid as Danny's condition. The ups and downs are physically exhausting for him, but we both feel emotionally drained as well.

About the time we sort of got our heads wrapped around that plan (going home on an IV life-saving heart failure medicine is scary) Danny went downhill again. He started dry-heaving, which is what happens when he has too much fluid. You see, Danny doesn't hold fluid in the normal heart-failure places...legs, neck, etc...he holds it mostly in his belly. Dry-heaving is miserable and leaves him weaker than before. He is currently running a low-grade fever and has a horrible headache. The answer for excess fluid is Lasix, but Danny has left-sided kidney failure because of a clot. Lasix is hard on the kidneys because it causes them to produce fluid at such a fast rate. Dropping fluid quickly also lowers his BP, therefore making him even more nauseated. There is no easy solution for Danny's fluid retention. The kidney and heart work together to handle fluid, and it can be a vicious cycle.

This evening the thoracic surgeon is rethinking the LVAD for early October and now the date he says is Sept.17. See what I mean about fluid? It's just day by day here...My prayer this second is that we would not waste the opportunity the Lord is giving us to trust Him with each fluid second instead of trusting in plans we make. James 1:2-4 says: "My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing". Keep reading...James is a wonderful book!!

Thank you for reading and for your prayers and support! We are humbled and blessed by how many people are reading this (over 1000)and praying!  I included a picture of all of us... please pray... we are missing our kids, and they are missing us.

 As you can imagine, the cost of a heart transplant is staggering. Should the Lord lead you to help us financially, our contact info at PayPal is helpdannysauer@gmail.com

August 27, 2013

Danny has been in the hospital for 18 days now and it has been up and down. After he went into v fib last week and his defibrillator shocked him, the doctors put a central line in...that's a big IV in the carotid artery (neck). Yesterday at 4:00 a.m., he woke up to find blood all over his sheets and neck. The dressing was changed several times throughout the day and finally the central line was removed. 

 

 

 

 A pic line was put in his arm, which is an IV that feeds a tube going toward his heart. This (in part) enables medicine to get to his heart quickly.

Danny is exhausted today and as of 10:30, is still trying to get sleep. The doctors came in earlier and said that the next steps will be discussed at tomorrow's board meeting (the transplant team makes decisions weekly about next steps for patients). The question is whether he can go home until the LVAD operation (mid-September) or heart transplant happens, or if he needs to remain in the hospital until then. Either way, he will stay on the Dobutamine IV, which is the medicine that is keeping his heart going. It was when his IV pump was mysteriously turned off for a few minutes on the way to a procedure last week that he went into v fib, so you can see how we are nervous to go home with that kind of responsibility!

Our Story

Thanks for coming to our blog. If you’re here, you’ve heard that Danny is in heart failure and has been placed on a transplant list. Many of you know our story, but for some of you it is new. So here it is from the beginning.

Danny and I got married in November of 1995 when I was 20 and he was 21. We had been married for two and a half years and were joyfully expecting our first son, Daniel. He arrived on April 27, 1998. Within minutes of his delivery, he was struggling to live. We were given the heartbreaking news that our little boy’s heart defects were incompatible with life. Just 24 hours later, we held and kissed our baby boy goodbye.

We were blessed to become parents again when Maggie was born on September 4, 1999 and 2 years later when Charlie was born on December 18. Life had settled into a sweet routine of raising our children. But that was short lived.

In July of 2002, Danny was bitten by a mosquito. In southern Louisiana, this is nothing to call home about. But with this mosquito bite came West Nile Virus. Danny fell seriously ill and was unable to work for several months. We filed for bankruptcy and had to move our family into our parents’ home.

Every cloud has its silver lining. Ours was that during his struggle with West Nile Virus, Danny came to know Jesus Christ as his Lord and Savior in a  more passionate way than ever before. As we clawed our way out of bankruptcy, we were also learning how to depend on the Lord for our every need.By 2010, our credit was restored and our American Dream continued as we purchased our first home and 2 new cars. Four months later, Danny lost his job when the company he worked for closed their United States Division. We are forever grateful to our family that had our back during this scary time.

It wasn’t long before Danny got a job with a wonderful company, Antares. He was able to continue doing what he does best: Computer Programming. I returned to school to get my teaching certificate.

On July 5, 2011, flank pain suddenly incapacitated Danny. We rushed him to the ER thinking it was a kidney stone. The CT scan revealed news we were not expecting. The “kidney stone” was actually a blood clot to the left kidney. In the cardiac workup that followed, Danny was diagnosed with viral cardiomyopathy.  The doctors determined that the West Nile Virus which Danny had in 2002 had in fact attacked his heart muscle, causing the cardiomyopathy, an uncommon, but known complication of the virus.  …One small mosquito…

In hindsight, we look back and see symptoms that we did not recognize. Running on the soccer field with Maggie and Charlie left him exhausted. After cutting the grass, he would come in totally beat. We just thought he was tired; after all, he worked hard and wasn’t getting any younger.

Really what was happening is that he was in early stages of heart failure and his vital organs were not getting the oxygen that they needed.

In the fall of 2011, Danny’s cardiologist referred him to Ochsner Transplant Facility in New Orleans. Danny had been on ever increasing medication to try and reverse the heart failure without any real results. Because his damaged heart is so ineffective at pumping, he’s been at risk for sudden cardiac failure. To protect against this, an ICD (combination pacemaker/defibrillator) was placed in his heart.

8/25/13

Since that time, Danny’s been monitored by his cardiologist and the transplant team knowing that transplant might very well be in his future. Over the past year, we have felt that Danny was declining. In April, he was able to very slowly walk a quarter of a mile. Not too long ago, he got home from work and was so short of breath and exhausted that Maggie and I carried him into the house. 

The first week of August  2013 was terrible. Danny couldn’t sleep lying down and was having trouble breathing in any position. He saw his cardiologist in Baton Rouge who was horrified by his condition and immediately sent him to the ER of the transplant facility. He’s been in the Cardiac ICU since August 9 and every day has been different and challenging for his team of doctors.

Danny is a unique patient in that his heart failure has progressed rather silently. In most patients, as failure progresses, you can hear telltale signs when you listen to their lungs. But Danny wasn’t retaining fluid in his lungs; he was retaining fluid throughout his body masking the progression of this disease. 

In two short weeks, he’s gone from being treated with oral medications to relying on more potent IV medications. The severity of his condition was brought home earlier this week when his IV was inadvertently turned off for a few minutes. Danny experienced cardiac arrhythmias that would have been fatal had he not had the defibrillator implanted. Danny described the feeling of having the defibrillator go off in his chest as a ninja’s sucker punch.

It’s been very sweet when he has rare moments of levity. Another that stands out is when, with IVs attached to both arms, he raised one and then the other and said, “Look, Tricia, I’m a marionette!”

It’s uncertain right now whether or not Danny will stabilize enough to go home and wait for a donor heart. The doctors have set a limit of mid-September at which time the current plan is to place a mechanical assist device to help his heart pump.

We know, whether with a donor or mechanical heart, that open heart surgery is just weeks away. As we struggle with the emotion of all this, it’s hard to not worry whether West Nile Virus will cause us to have to declare bankruptcy for a second time.

I have taken a leave of absence in order to be with and take care of Danny during this scary time. I don’t know whether I will receive any benefits because I have been with the school district for fewer than 12 months.

The costs associated with heart transplants are staggering, and there are thousands upon thousands of dollars worth of costs that will be out of pocket for us.

People are asking what they can do to help. The prayers, the childcare, the many acts of kindness are a godsend. It is so humbling to us to know that the Lord has put it in the hearts of some of you to help us financially. You will never know how truly grateful we are.

To that end, we have set up a PayPal account and our contact info with PayPal is helpdannysauer@gmail.com

Those of you who know Danny know how internet security conscious he is. He is very comfortable with PayPal because it is a secure, encrypted service for transferring funds. Using this site allows 100% of the funds to be allocated toward Danny’s medical expenses. If you don’t have a PayPal account, you can easily set one up at PayPal.com

More than anything, we ask for your continued prayers.

We look forward to hearing from you through this blog as we post updates here.