Monday, April 28, 2014

Getting used to medicines

It's been a long time again since I've blogged. I appreciate the people who ask about Danny from time to time because it reminds me that people are thinking, caring, and praying for us. I get so wrapped up in keeping things together that I forget about others I guess. 

I am so grateful and thankful to say that Danny still has not had ANY rejection. I have to keep reminding myself of that and be intentional about thanking the Lord because the medicinal side-effects are so difficult for Danny...and therefore me too.

  • intense burning all over his body from the inside
  • intense fire-ant bite like feelings all over
  • Intense itching everywhere
  • horrible vision, causing headaches and dizziness
  • confusion/concentration problems
  • mood swings, severe
  • surgical pain, controlled with pain is a 6/10 on pain scale (10 being worst pain possible)
  • cramping
  • weakness
  • shakes
  • excessive sweating during sleep
  • sleeplessness
  • exhaustion
  • depression

If you add all of those symptoms together, it makes for one hard day...for Danny and those around him who are trying to help him. 

The medical bills are just scary. He has had three open heart surgeries so far...

  • LVAD (mechanical heart pump) implanted
  • Heart transplant and LVAD removal
  • Repair of transplant surgical complications

Those three surgeries required months of hospitalization and that adds up quickly! After a transplant the doctors do biopsies routinely to check for rejection. Biopsies aren't fun because it's a tube going in through the carotid artery on the right side of the neck that is fed over and down to the heart. A small chunk of the heart is cut off and removed for the biopsy. They have always taken a few chunks with each biopsy...I guess to make sure they have a good sample. Biopsies aren't anything new, but now there is a blood test that can be done through blood work. It's called Bio Map (I think that's how it's spelled). Anyway, obviously it's great because for Danny it's just more blood that has to be drawn and no matter how someone hates having blood drawn, it's always going to be more pleasant than an actual biopsy. So far Danny has had three Bio Maps done, and each of the results has matched the traditional biopsy results. The plan was to discontinue doing the traditional ones and do only Bio Mapping in the future. Danny and I found out (after 3) that Blue Cross won't cover the Bio Mapping because it's still in an investigational stage. Ochsner sent documentation to Blue Cross to explain why it is medically suggested for Danny and all of the current statistics, but Ochsner stood by their original denial. Each Bio Map is extremely expensive, and unfortunately it's our bill. I think Danny is going to request to have traditional biopsies instead of the Bio Map since insurance won't cover it. 

He will soon be returning to work. I'm not sure how it will go because programming is such a detailed and technical thing, but returning to "normal" will be a good step. His work is so great and I know they will work with his shortcomings until he is weaned off some of the medicines with such terrible side-effects. He is supposed to wear a face mask anywhere away from home for a least a year after transplant, so I'm not sure how that will work. Wearing a face mask throughout the work day doesn't sound like fun to me! 

Prayer requests:

  • finances
  • medicine side-effects
  • encouragement
  • faith

Thanks for continuing to pray for us. We still have a long road ahead of us!!


Sunday, April 6, 2014

life and death

Contemplating life and death is hard. I'm very much a realist, but there are times when I intentionally stick my head in the sand and absolutely refuse to listen to what may or may not be the reality. 

1. I choose to believe that babies go to Heaven. I have heard both sides of the argument and have read what the Bible says about both of those sides. Though I side with the "go to Heaven" believers, I have lived enough to know that first, I don't know everything, and second, I certainly don't know everything about God or Heaven. 

Our first son, Daniel Jr., died at 25 hours old from an unexpected heart-defect. I simply cannot live with the thought of him not being in Heaven. So I don't. The Bible says in Revelations 21:4:

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

So, I know that even if I'm proven won't matter because somehow I won't mourn or cry or feel pain. 

Last night one of my dad's dogs (children) got hit by a car. Dad is out of town and the teenager next door to him and I take care of the animals. I don't know how Patches got out and the guilt and grief the teenager and I are feeling is immense. Let's suppose that Patches opened the door himself (which is possible because this dog is like Houdini), it still happened under our our watch while Dad was away. I told Dad (over the phone), which was completely heart-breaking. 

Patches was a truly amazing dog. He was a German Wire Haired Pointer...which is the kind of dog on the movie Up. He was HUGE...but thought he was the size of my Maltese. Patches would attempt to put his entire body in your lap and would literally wrap his paws around your neck to hug you...when I say you I mean anyone who was in the room!! Danny doesn't like big dogs at all and Patches, through his complete love and affection, bonded with Danny. It was really neat to watch Patches snuggle with Danny but somehow knew to not put any part of his body on the parts of Danny's body that are still so painful from the surgeries. To watch my dad with his dogs is like watching my sister with her son. He loves them and they adore him. The teenage boy, his dad, Maggie and I buried Patches and Maggie picked flowers and made a cross for his grave. 

2. Just like with babies, I choose to believe that animals go to Heaven. However, unlike with the babies, I haven't heard anyone ever use evidence from the Bible to back up my claim that animals are in Heaven. But that doesn't matter to me. Head in the sand!!!! Animals love, feel fear, pain, sadness, joy, etc... The Bible says:

Then shall the trees of the forest sing for joy before the LORD, for he comes to judge the earth. 1 Chronicles 16:33 


Sing, O heavens, for the LORD has done it; shout, O depths of the earth; break forth into singing, O mountains, O forest, and every tree in it...Isaiah 44:23

If the trees of the forest can sing for joy before the Lord and the depths of the Earth, mountains, and forests and sing and shout...why can't animals have a soul, be saved, and go to Heaven? Or why can't God bring them to Heaven just because he loves them even if they don't have salvation like people do. Anyway, don't waste your time trying to be the voice of reason in my life to prove to me why I'm wrong because I won't listen. In fact, I won't even listen to you! 

Here's what I'm choosing to believe...Today, Daniel Jr. and Patches are together and are both quite happy getting to know each other. 

My heart is aching from sadness. I've cried a river today! It was completely impossible to not love that dog! 

Danny has been having severe pain in his right forearm. The slightest touch causes him to moan and jerk his arm away. The big vein on the inside of his forearm is hard like a rock. I called the nurse to inform her and he had an ultrasound done the next day in New Orleans. He has a large blood clot in his right arm pit that is causing problems all the way down to his hand. Apparently the negative effects (or the clot itself) only go a few inches and down to the elbow at most...but once again Danny is unusual and has more complicated problems. They didn't admit him Friday because over the weekend not much would be done other than observations, so he will be at Ochsner more this coming week to do more tests. Not only are they concerned with the large clot they do see, they are worried there are more smaller ones underneath they couldn't see on the initial ultrasound. I don't know what the plan is to deal with the clot yet. I don't know if he will be put back on Coumadin to prevent future clots (He hasn't been on Coumadin since having the LVAD). I don't know what the risk is for part of this clot breaking off and causing a stroke. I do know that the doctor teared up when she got the ultrasound results and told Danny that of all the patients she didn't want this for him. He has had lots of unusual complications they haven't understood!! I also know of an LVAD and subsequent heart transplant patient who had waited years for a heart died 5 months after transplant of a stroke. I do know that stroke is a major risk for transplant patients. 

I can't stick my head in the sand when it comes to Danny. I have to face the reality of how severe all of this is. Life and death is in the Lord's hands. 

And he said, “Naked I came from my mother's womb, and naked shall I return. The Lord gave, and the Lord has taken away; blessed be the name of the Lord. Job 1:21

The doctors told us at the beginning of all of this end stage heart failure stuff that transplant is a last option. It's a good option, but only when all other measures have failed because then the person is so susceptible to other potentially fatal complications. The truth is that Danny's life is in the Lord's hands. As unbelievable as all of this still is to us. Danny never expected to be a heart transplant recipient when he was dreaming of his grown-up life. I never imagined to be the care-giver of a very ill husband at 37-38. Danny's parents never imagined that their son would ever be so ill. It's just unbelievable even though we face it day in and out. But what is awesome is that none of this is unbelievable to God. He gave Danny to Joe and Carolyn knowing what Danny's life would be like. He put Danny and I together and gave us our children knowing what we would walk through together. And He knows-in His infinite wisdom and love for us- what we can and cannot handle and He will never allow us to go through anything we can't handle and He never ever asks or expects us to handle anything alone. He is our strength and comfort. Our joy and peace. Our guide and conviction. He's a loving Father in every sense of the term. 

No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it. 1 Cor 10:13

Temptation refers to all of the struggles we face...true temptations like food, but also trials we face like death (The Greek for temptation and tempted can also mean testing and tested).

I was telling my sister-in-law today how amazing I think she is. She is a single, independent, intelligent, professional, career woman. She travels internationally (alone many times) for business. She does her own taxes (truly amazing to me!!). She cooks, cleans, studies the Bible, takes continuing education classes to learn a new hobby she finds interesting. Though she would love to be married, she has not allowed being single to hold her back from amazing adventures in life. I drove across the border into Canada with my mom last year when she lived in Maine and felt uncomfortable being in another country without Danny...even though we were perfectly safe the whole time. I'm so dependant on Danny! If it's in the Lord's plans for me to learn to depend on Him in the same ways I depend on Danny, I can honestly say that I'm not interested at all in that lesson right now. I'm just going to be extremely grateful for every second I have with Danny and won't dwell on what life would be without him. Right now I can't see how I would be able to handle it, so I'm assuming God has many more years planned for Danny!!

Danny is still having a LOT of trouble concentrating. He got in trouble with the nurse for trying to do too much. Danny attempted to go for a jog and barely made it down the driveway without falling. The nurse really fussed at him and told him to think more in terms of Sudoku. Danny also cut the grass one day while I was at work (fell down three times in the process). I noticed the grass right away when I got home and immediately felt sick because I know how stubborn and determined Danny can be. I didn't tell the nurse about the grass because I knew how angry she would be...Danny promised me he wouldn't do anything that stupid again. When I went into the bedroom after seeing the grass he looked truly horrible. It was so hard to control my temper. I was so angry and scared!! I didn't have to fuss at him because he already knew how dangerous and stupid it was and was already in a huge amount of pain. 

Danny is so frustrated that he can't think well. He wants to work so badly but is having trouble with the computer/developer stuff he is attempting at home. Thankfully (according to the doctors)  the mental stuff (lack of concentration/confusion??) is 100% medicine related and will get better as he is weaned off of some of the meds over time. 

Danny's work has been more supportive and helpful than I would imagine any other company in existence. My 1st grade students have had discussions about how girls cry for many different emotions...and the people Danny works for and with constantly bring me to tears with gratitude, humility, and joy!! 

Thank y'all!!!!

I will update the blog when I know more about the clot.
As always, thank you for your prayers. They are not unfelt!