Resilience - and Anniversary?

 So, one more day, October 24th, will make 1 full year from the fateful words, "I don't feel good".   Wow, I can't believe typing the above sentence still feels like a punch in the gut.  But damn (excuse me), what a difference in one year!   From death to life.  From "life will never be the same" to "life is becoming the same".   From "oh my god, I'm going to have to do what?" to not having to do much except listen for alarms every now and then.

In one year Tyler has gone from death's door to pretty much the same old Tyler.  Physically Tyler is doing very well.   Last June when I decided to take a solo trip to visit my family, I was pretty confident that Tyler was ready to take over his care.   Since then, with some minor backup, I've done nothing.   My gig is up.   Tyler has taken care of all his meds, supplies, appointments, etc.   Even taken a trip by himself to Phoenix.   And to top it off, he won a national design award just a couple of weeks ago.

A friend of ours likes to joke about "how hard it is over at the Anderson/Swoverland household", since we don't seem to be "suffering" enough.   When Tyler won the award, he said.. "Oh great, we are going to get the 'oh it is soooo hard over there' speech.   It was then that I really started to understand resilience.  Notwithstanding the massive generosity of friends and family, in the form of prayers to money, that allowed us to survive the initial part of the crisis,  Tyler and I have been resilient in moving forward with the life that has been dealt to us.   It took a long time, about 9 months, to feel like we were getting back on our feet.   Things are still a bit murky as to how things will continue, but we have survived and continue to push forward.

Tyler has done some smaller jobs and continues healing.  He is getting physical therapy on his leg and it seems to be helping a lot.   More pain, but we still take that as a good sign for nerves coming back in his leg and foot.  No ER visits and no real excitement with the pump.   He is feeling a pain in his abdomen on the side where the pump is and will be checking that out this coming Monday.   The one worry may be that the pump has attached itself to the abdominal wall.   So they will do an ultrasound or X-ray to check things out.

So, wow, one year later.   Tyler is moving around better, cooking again (thank god!), reading again, staying up late and sleeping late (okay, that one is new), and truly is so much better.   I'm still cancer free, the animals are doing well, and life just keeps moving on.   To think back to the night of October 25, 2009 (the first night we got to St. Luke's), when I stood outside staring at the medical center buildings in Houston and wondering what in the world I was about to face,  and to sit here now in my house with things basically back to normal, is truly a testament to resilience and the power of family and friends!

Robert

Janet and David

I've mentioned Janet and David in some of these past postings.   They are the couple we were introduced to in Houston that had an LVAD.  Both Janet and David helped Tyler and me immensely in understanding (and witnessing) day-to-day life with an LVAD.  David had received his LVAD about 5-6 months before Tyler.  In the early weeks of our event, I was introduced to Janet by the staff at St. Luke's.  Janet graciously sat down with Tyler's parents and me to start sharing her experience and knowledge about life with an LVAD and trying to get on the transplant list.  Janet was one of the angels sent to me during this crisis.   Yes, some of the information imparted to me seemed overwhelming at the time, but Janet's stoic stance and determination helped me to see that this situation could be dealt with.  Over the months Tyler and I were in Houston, Janet and David were always there for us.  When I would take a trip back to Colorado, Janet would come to the hospital to hang with Tyler.  When Tyler was out of the hospital, Janet and David would come over to the apartment to talk and continue to help us through the "maze".   One of the most notable interactions between us was when Janet told Tyler that he wouldn't be able to use a vacuum cleaner any more due to the possible static electricity.   Poor Janet, she thought this would be a positive for Tyler.   She was mistaken.   Tyler was none to happy about this restriction and let us know that immediately.  Janet had a shocked look on her face as she thought Tyler would be over-joyed by this news.

David went in to the hospital a few weeks ago to have his LVAD upgraded to the new model.  Unfortunately he started experiencing many issues related to the surgery and battled for weeks with different problems.  On September 2nd, 2010, David lost the battle and passed away.  Janet and David fought a very long struggle but always maintained a fighter's attitude.   Janet dedicated her life to their struggle and to helping others going through this same struggle.  The last several weeks were very stressful and hard on Janet and showed just how hard being a caretaker can be.  Janet was a strong role-model.

I am very sad for her as she has been going through hell not only for the past few years, but a particular hell this past three weeks.  My heart truly goes out to her and her family and hope that they can start moving forward again with the knowledge that they have performed the hardest job someone can ever have in life and did it with flying colors.  

Robert

John Doe - Gunshot Wound

8/3/2010

Tuesday seemed like a pretty normal day.  Tyler walked the dogs in the morning and we both worked like normal.   Tuesday evening decided to be exciting.

Just after finishing dinner, while watching TV, Tyler started to tell me he was dizzy, having double-vision, and a bit nauseous.   Like everything theses days it started off as a "wait-and-see" event.  He then mentioned that he felt like this in the morning also.   I told him to call the VAD coordinator just in case.

He sent a text to the Kathe, the VAD coordinator, but then didn't remember sending the text or changing his batteries or talking to DJ on the phone.   Kathe texted back asking a couple of questions and then called.  We started discussing the symptoms and Kathe decided to call Dr. Brieke.  While waiting for the doctor to call back, Tyler's nausea came back and he vomited.    We then tested for a possible stroke.  Eye movement, hand grip,  facial muscles....   It seemed like Tyler's blood pressure had dropped or it could be that he was just sick.   Once we told Kathe about the very short term memory loss, the night became exciting.

Tyler had decided to lay down in bed and go to sleep.  Kathe had other plans for us.   I got Tyler up and we drove to the ER at the hospital.   This was about 8:30pm.   Neither of us were panicked (although I did almost side-swipe a car on the interstate ).   We got to the ER and were admitted immediately.    I wished I had brought a pen and some pictures of Tyler so he could sign autographs.   Everyone wanted to come see the LVAD patient since they rarely get one in the ER.  They took his vitals and things seemed fine.   Tyler was actually feeling better by this time.   He also mentioned that he has been having headaches for the past couple of weeks, so a CT scan was ordered.  A mention was made that they might admit him for overnight observation.   Tyler's response:  "No. No I'm not staying overnight.   I shouldn't have mentioned anything.  I'm not staying."  We agreed that if nothing significant was discovered we were going home.

The initial wave of doctors/nurses/paramedics coming in to see the LVAD had died down and things were quite while we waited for the results of the CT scan.  Then we were told paramedics were bringing in a gunshot victim into the same ER room we were in.   The activity picked up again as everyone was rushing to prepare for the new arrival.   Curtains were drawn between us and where the victim was going to be and they brought in a 16 year old gunshot victim.   Tyler, Kathe, and I stayed huddled very close to Tyler's bed while listening to all the activity going on.   The scene wasn't quite like the TV hospital shows.  Granted, lots of activity, but just not as dramatic.   It seemed like within minutes the doctors and nurses had things under control and moved the victim to an OR room.

We got the results of the CT scan and things looked fine.   We think Tyler drank to much water during the day and depleted his sodium.   So now the remedy is to drink some juice, infused water, or Gatorade in addition to the water he is drinking.  He is also going to have an echo-cardiogram this Friday.   They are still feeling a pulse and may have to adjust his pump.  They are a little concerned about possible "suction" events.  Basically if his left ventricle is pumping more than the pump, it creates a suction of the flap between the right and left ventricle.   (Reminder:  I'm not a doctor and only play one at home.   I may not have this info exactly correct.)  If this is the case then they will adjust the pump speed.   I'm still hopeful his left ventricle his getting stronger.   I mean we are talking about the "miracle child" and Tyler has beat all expectations already.

We got back home around 1:30am and went to bed.  Today has started out normal again so fingers crossed!

Robert

Indiana and a Pulse

Our trip to Indiana was basically uneventful, well kinda......
Our first night of the trip, when we stopped in Des Moies, IA, the battery charger showed the "broken-battery" symbol when we put the batteries in.  Going from memory, I thought I was supposed to push and hold the specific battery's button, which would re-calibrate the battery so that it could hold a full charge.  I did this and saw no indication that it was re-calibrating.  The down side of re-calibrating is that it first drains the battery completely, then recharges it (about a 12 hour process).   I tried looking on the Thoratec web site for instructions but couldn't find any.  I talked to Kathe, the VAD coordinator at UHC, and confirmed it doesn't show an indication.   While in Indiana, I noticed one of the batteries in the charger had a red light on.   This meant the battery was completely dead.  Once again Kathe came through and had replacement batteries to us the next morning in Fort Wayne.

The trip to Indiana was going well.   Tyler's family was very busy getting donations for the benefit on July 16th.  Susie, a family friend, had instigated the benefit after we had decided to visit.   She, along with Tyler's high school drama teacher Harold, were able to secure the Churubusco High School cafeteria to hold the benefit.   There were many local business that donated items and notices were put in the local shops in Churubusco.

About 5 days before the benefit, Tyler and I went to Lake Wawasee to hang out with our friends the Lahren's.  We took their boat out and "docked" at a sandbar in the middle of the lake.  Renee was worried about what to do if Tyler fell into the lake.  Basically, you pull him out and make sure the controller didn't fry and if it did, use the backup controller.  We had no incidents and everything went fine.  Of course, when we driving back to Tyler's parents house, we realized we didn't have the backup-bag.   Where was it?  Oh, on the boat.   Luckily the Lahren's hadn't quite left and were able to grab it and bring it to us back in Fort Wayne.  It is amazing how easy it is to forget stuff since Tyler is doing so much better now.   For the boat, Tyler took his shower bag so that the controller and batteries would be protected from water splashing and everything went fine.

I took a short trip to Albany, NY from Fort Wayne to visit my sister and her family.  Very nice trip and I figured everything was basically going well back in Fort Wayne.   Well, maybe it wasn't.  Tyler was out with his father and his "15 min. battery alarm" went off.  He silenced the alarm and then forgot about it.   An hour later the "5 min alarm" went off.   He had his backup batteries with him so it wasn't a emergency, but doing these "tests" to see just how long the batteries will go maybe isn't the best thing.
Also, Tyler called me on my ride to the Albany airport to return to let me know his mother had been taken to the hospital because she became extremely sick the day before.  It ended up being a small bowel obstruction and she had surgery on the day of the benefit.  She ended up spending about 5 days in the hospital.  We are being told by some that Tyler and I leaving Colorado is a danger to us and others and maybe we should be allowed to travel!

The fundraiser went very well.  I was a little nervous and preparing for a meeting a lot of people and Tyler thought only a small handfull of people would show up.  Well, it was a lot more than 20 people.  I'm not sure how many came, but seemed like around a hundred or more.  Everyone was wonderful and very glad to be able to see Tyler in the flesh.  Just like the Denver benefit, the turnout and support was overwhelming.  Relatives, cousins, high school friends and teachers, on and on.   The benefit lasted from 6pm to 9pm and while Tyler was a bit worn out, he was extremely happy to see everyone.

The drive back to Denver was pretty uneventful and we were glad to be back home.

Tyler had his monthly checkup last Monday and the nurses felt a pulse.   He isn't supposed to have a detectable pulse, just a continuous flow.   So what does this mean?   Dr. Frasier at St. Lukes/Texas Heart Institute, had made comments that maybe given enough rest and healing time, Tyler's heart may repair itself.  The larger consensus was that the damage was to much to heal.   But, Tyler is of course the "miracle child", so who knows.   It would be the ultimate outcome to not need a transplant and be able to remove the pump.

So, thank you to everyone who turned out for the benefit.  And thank you to Susie, Tyler's family (I'm thinking about you Temple!), and everyone else that helped out.

Now back to work,

Robert

LVAD Social

Today we went to Univ. of Colorado Hospital's first LVAD Social.  I'm not sure if this was the official name of the event (okay, it was Mechanical Circulatory Support Meeting or something like that, but I'm calling it a social).   It was very good to meet the other LVAD people in the Colorado area.   In fact, we met one woman who had just gotten back from St. Luke's where she had Dr. Kar as her doctor and Peggy as her VAD coordinator.  And she went through the same floors as we did.   Made me miss the St. Luke's staff (and gave me some very weird flash backs).   She told us that we were mentioned to her while she was there.

The group was a mix of ages and most have the LVAD as a destination therapy (not going to be put on a transplant list).   In fact the woman we met won't be available to be on the list for 5 years as she had just finished chemo the week before her heart event.   Kind of made me re-evaluate our bad luck...... maybe it wasn't as bad as it could get!    Everyone was very nice, talkative, and very upbeat.    Some had just gotten the LVAD while others have had there LVAD for years.    

We also went to clinic today and things still look pretty good.  Tyler's INR ratio dipped slightly, but not enough to change anything.  We were able to have a good "heart to heart" (pun intended) with Dr. Brieke about life with an LVAD vs. a heart transplant.   It has been good to have the time to weigh the risks and benefits of both so that we are ready for the next step when it happens.

We are taking a trip to Indiana on July 8th so Tyler can visit friends and family.   We are going to drive instead of flying so we can avoid the airport security headaches with all the equipment we'll be taking.  This also gives us the opportunity to take the dogs (Toby and Bowser) with us on the trip.    Should be interesting!

Robert

Doctors and more Doctors

So what has been happening since April?
Life has calmed down somewhat, but Tyler continues to have multiple doctor appts.  Orthopedic, General, Cardiology, Neurology, Psychiatry  & VAD clinic.   Due to the meds, which caused constipation, Tyler developed a hernia.  At first there was going to be surgery, but now that he is off the Fentanyl and has reduced the hydrocodone, it appears the groin hernia is reduced enough that surgery isn't necessary.  There are still some other issues, but due to decorum I wont' go into those.  I figure talking about his constipation is good enough for now.  His leg is getting better and better.  The neurologist said that the damaged nerve was his sciatica.  Great.   Now he can walk around saying, "oh, my sciatica!" like an old man.  But they also said from their test that they expect full recovery.  They also said the pain will probably get worse as the healing continues.
With the Univ. of Colorado Hospital staff, we have been able to adjust some of the meds (reducing some and eliminating others).  His INR (blood clotting factor) dropped a bit (to about 1.2) and they added an extra amount of Warfarin Sodium.  This got the level back to where it was supposed to be. 

We lost power to the house in May and what a fun time that turned out to be.   We were asleep when the power went out and the main power unit that Tyler is hooked to at night let us know the power was out with piercing alarms.   Tyler switched to batteries and we thought "that was that" and went back to sleep.  Unfortunately the power came back on and then went back off.   More alarms.  Finally, in the dark, we were able to disconnect the cables so it would quit alarming.   I wondered how long the power would be out before we would need to make some plans.
Well, it seems being on the power companies list really works.   Kudos to Xcel Energy.   About and hour after the power went out, the crews were outside the house working on things.   At 8am there was a knock on the door.  The power had been restored but guess whose trees were causing the problem! 

We are now in June and Tyler is getting stronger to  work out with his trainer Lasha.  The hospital staff has been impressed with his efforts.   There was even mention of trying a 5K.   We'll see.

It is good to be home and Tyler continues to try and figure out the next steps.   For now he is still not on the transplant list.   At first we were not happy about this (let's get this over with!.... Robert is tired of blogging!), but this has turned out to be a good thing.  It has given both of us some time to adjust before the next big thing.   Tyler is also now dealing with his own meds (scary) and changing his dressings.   He continues to become more and more independant.

I've been following my friend Janet's (Houston) Facebook postings.  Appears a family that was there when we were (Chessers) are having issues with a heart transplant rejection.   Tyler and I talked a bit about this and he is still trying to get his head around having the heart transplant.  A little more time on the LVAD will hopefully give him the time to figure things out.

Other than that, I continue to try and make things work at work.   Tyler is still trying to figure out how to rebuild and how we will deal with things.  But thanks to the wonderful benefit in Denver last fall, we have been able to make it to this point.   Life is actually good, just scary at times.   Tyler and I took the dogs for a walk last night.  I was riding my bicycle and rode ahead to the house.  After a while I took the bike back out because Tyler still wasn't home.  Yes, the thought ran through my mind!   Of course, there was Tyler talking to a neighbor.   Sometimes things actually don't change.

Robert

Still Waiting .....

"Not motivated for a heart transplant". 

Seems Tyler and I might be a bit to grouchy for a heart transplant.   I guess our interview with the transplant social worker didn't go so well.   Hmmmm, why were we grouchy that day?  Okay, we got word that Tyler isn't on the transplant list yet.  Wasn't a final no, just some concerns.  The leg issues and narcotics for the pain is one and valid.  As for not being motivated or not understanding the importance of a transplant..... not buying that one.   If so, then I'd rather be in the Caribbean being unmotivated.   We just had a bad interview (wasn't horrible, but we have been a bit frustrated lately).   Dr. Brieke (Cardiologist) and Kathe (one of the VAD coordinators) are fighting for us.   Kathe is even checking up on my health and I think has become my "Stephanie" (St. Luke's transplant coordinator) in Colorado.  That is a big compliment, but I don't want to fan any flames of competition between Denver and Houston!

Tyler has an appointment with a director of the list April 19th so that the UCH staff can meet Tyler and get to know him and our situation better.  We will meet the transplant team more as time goes by and everything will be fine.   Sometimes I think Tyler and I can be a handful for the hospitals! I even mentioned that I was going to have to "re-engage in this full time again" if things didn't start progressing better.   Tyler is handling his care and I want Tyler to control his "destiny", but I may be getting a bit impatient.  Must.... control....  my....  control...   issues! 

Tyler has taken great strides in developing the strength in his bad foot.  The neurologist thinks it is stronger than his "good" foot.   He also continues to try and gain more weight (up to a limit...I mean we are talking about Tyler and you know, god forbid he gets fat.)   He has also gained more independence and is able to make short errands by himself.   He still gets tired and takes naps that are usually 2 hours or so.

There was another comment concerning listing on the transplant list: "... he is doing fine on the LVAD".  Tyler's response was "...let them have an LVAD as see how fine it is.".   I, on the other hand, went through the stages of coping in about an hour.  I'm getting much faster at it.  I went from "What?!" to "....I'm going to bomb so and so", to "eh, it will happen when it happens" pretty quick.   And it will happen when it is ready to happen.   We just need to "meet" the staff at UCH more.  I forget that my "meeting" with St. Luke's was intense and they were able to figure us out since there was so much "quality" time together!  I still miss my Houston team, but Colorado will pull through....no doubts.

Disability payments haven't started yet for Tyler and maybe they will in May.   The will only go back to a March date since there is a 6 month period before being eligible for payments.

We have had some bigger fights and both have wanted to just walk away.  But, we get over that intense moment or moments and keep moving forward.   We still have days of depression and it appears I have taken to grinding my teeth in my sleep at night but only about 3 times so far.  We tend to alternate depression days.  But we are still kicking (and screaming) along....

We had another "alarm" event.  We were being graciously treated to a dinner out with his parents from Lucy and Andrew at Elway's restaurant.  It is a very nice restaurant and was wonderful treat.   During salads we heard the battery alarm beeping.  This was the '15 minutes' remaining alarm.   Tyler and I went outside and swapped the batteries.  Decided we shouldn't do that in the middle of the restaurant.   I think we worried a couple of people but for us it was just another day.   We have become used to this and take it in stride, but it still tends to freak out some people.  For me at least, it is still better than last fall.


Robert

Looking for a rock.....

.....to crawl under.

What has been/is going on:

1. Three consecutive days of heart transplant evaluations planned for March 16th - 18th. University of Colorado Hospital (UCH) wants to do a full slate of evaluation tests before placing Tyler on the transplant list. Of course Anthem Blue Cross doesn't want to pay for evaluations that were already done in Houston. UCH and Anthem are supposedly working out what tests will be done and paid for. Otherwise we would have to come up for the money to pay for the tests. And if the tests aren't done, no listing on the transplant list.
2. Still waiting on Anthem Blue Cross to approve, deny, or partially pay the Cozumel medical expenses including the air flight. We are stuck waiting for them to play the paper work shuffle games before we can file with the travel insurance. Even if Anthem would just deny the claims we would be better off, since we could send what we need (again) to the travel insurance company.
   
3. My kidney stone surgery. Surgery went well and I had thought it went extremely well since I never felt any pain. Found out I still haven't passed the fragments. They are still sitting in my kidney. I would like just one of our ailments finished off. Maybe I'm asking to much? I'm sure the fragments will pick the most appropriate time to pass (like during a business meeting).
   
4. Tyler caught his drive line in a car door. Also fell down a couple of exterior concrete steps and skinned his knee (yes, the knee on the bad leg). Luckily he is on blood thinners....oh wait a minute. Tyler called me to let me know what had happened so I figured since he was talking there was no reason to panic. He thought the same thing. Amazing what doesn't cause a panic anymore. He only split the cord cover a bit and barely exposed the internal wires. Went to the hospital and they taped it up and did an x-ray. Luckily none of the actual wires were damaged. They tested to see if there was damage to particular wires in the cord. Certain wires interact with the batteries and others to the power base unit. So you could cut some wires and have the batteries still work but not main power, or vice versa. Previously, if the cord was damaged, it would mean replacing the LVAD by having open heart surgery again. Thankfully there is now a repair-kit approved by the FDA. You can pick it up at any local hardware store....
   
5. Been to a couple of VAD clinics at UCH. Anne and Kathe, VAD Coordinators, are great and funny. So far Tyler's blood work has remained in the range they want. Dr. Brieke, his primary cardiologist now, has a very nice laid back style. We have also met Dr. Reece and Dr. Cleveland, the heart transplant surgeons.
   
6. A new year started for my insurance coverage and I have already had to meet the yearly deductible due to charges for oncology CT scans and x-rays, and the kidney stone surgery.
7. Tyler not wild about going through a heart transplant and sometimes feels like he would rather stay with the LVAD. I still would like him to get the transplant. No more wires, can sleep in whatever position he would like, and (the most important) he could use the vacuum cleaner again!
   
8. I sold my car. Just using Tyler's car for now. We'll see how that works out when Tyler is ready/able to drive again. But for now the extra monthly income will help out a bit.
   
9. Tyler's parents coming for a visit. Haven't seen them since I used to live in Texas. I've fallen out of touch with them a little bit because Tyler is able to talk. But it will be nice to see them again.
   
10. Tyler and our neighbor, Karen, took the dogs for a 45 minute walk. Tyler did this without using his cane and it went well. So the leg/foot is still improving. Still painful, but getting stronger. Still need to get his weight up. But he is now off the Nexium (acid reflux) and Furosemide (diuretic) pills.
    

As for life in general....not so great lately. We are still pushing through each day but it gets depressing. The medical bills are piling up, not sure about the transplant listing, still wondering what is going to happen, work income isn't enough to cover all the costs, and for me .... I can't seem to get a plan in place. Trying to decide if I should get a second job, but that wouldn't give me the flexibility to be available for cut cords, etc. Tyler is trying to decide what to do about bills and debts.... wants to hold on to his good credit rating and do the right thing but without being able to work and still waiting on a heart transplant, it seems insurmountable. Still waiting for disability payments to start. We are both worried about hitting Tyler's lifetime insurance cap with Anthem and what to do about future insurance for Tyler. Bowser, the lab, got an ear infection. Juggling my work needs (have two out of town trips coming up) versus what help Tyler needs. Does he need someone to stay overnight or not. But this is up to Tyler. There are LVAD patients that live alone, so he'll basically need people "on-call" just in case something happens.

Then for me there is the intermittent wondering, when things are very quiet, if Tyler is still alive or just napping. I know the last statement was pretty heavy and it isn't as if I'm scared that would be the case, but the thought does run through my mind every now and then. Just part of this experience.

Then there is the uncertainty of what we will be able to do since our relationship is "unrecognized" by the federal/state governments. Okay, a political moment. We are in this together but we have to make sure that if we aren't entitled to any "benefits" in this relationship, we are also not required to satisfy the "responsibilities" of a recognized relationship. Sorry, the government can't have it both ways. Okay, they can, but it doesn't mean I have to like it.

About two weeks ago I finally felt glad to be home. There were just to many adjustments/responsibilities to go through at the beginning. But we are home. I do miss my Houston buddies .... St. Luke's staff, Janet and David, and all the great people that helped me through the beginning of this. We haven't met other transplant patients in Colorado and it was nice to be able to commiserate with Janet. David had his own scary issue come up due to a staph infection. Luckily it didn't infect the drive line and his is okay.

I miss the days of just getting a cold.

It was hard to put out posts to the blog in the past month because I wasn't sure what to write and wanted to concentrate on work. The challenges also seem/seemed overwhelming and I feel like I'm whining. And it isn't fun to write about being depressed. But I haven't really been in the mood to do the "keeping our chins up", "hoping for the best", "we'll pull through", type of writing. But, I keep trying to remember that if I can believe that bad unexpected things can happen (cancer, heart attack....), then I need to believe that good unexpected things can happen. Like having Ed McMahon show up with my Publisher's Clearinghouse prize.....oh, wait a minute, he's what? .....damn! Guess that isn't going to happen.

Unfortunately for my mother, we had two consecutive phone calls where she caught me at my lowest. She thought I should ask my doctor about taking anti-depressant pills. I joked with her saying my doctor said that was what mothers were for. ;-) I appreciate the concern, but I'm not quite ready for pills. Amazingly I think Tyler and I still have fight left in us. I'm not sure what the other side of this will end up being, but sometimes I wish it would just get here faster.

Robert

No pain, no gain

We are both doing fairly well. Tyler should be placed on the transplant list again sometime next week. Looks like he will be a 1B status. The transplant surgeon commented that typical wait time is between 6 weeks and 8 months, with about a 14 day average recovery.

We met with a neurologist about his leg/foot issue and they will be scheduling a nerve test to further diagnose the nerve damage. But the neurologist felt that the nerve(s) were regenerating and should continue to get better over time. Still trying to deal with the pain medicine so that a good balance between pain and the number of meds can be found.

Tyler continues to do his cardio exercise. Lasha, a friend, comes over about 2-3 times a week and takes Tyler to the gym. His walking is getting better, but since he still can't really feel his foot completely, he is still walking with a cane and can't drive.

I've returned to working more while scheduling Tyler and my doctor's appointments. I had my kidney stone checked out and will be having surgery March 1st. The procedure is Extracorporeal shock wave lithotripsy (ESWL). Basically sound waves are blasted at the kidney stone to break it up, so that it can pass. The kidney stone has been lodged in my kidney since last year. The doctors knew about the stone last year, but wanted to attack the cancer first. The stone is not really causing any massive pain right now but I don't want to wait until it dislodges. Hopefully the surgery will break up the stone enough that it will pass through somewhat unnoticed. So, I finally will get some pain meds also! What a sight our house will be those couple of days! There is also a hydrocele that has developed and may require a hydrocelectomy. I'll let those interested look that up on the web (https://health.google.com/health/ref/Hydrocele).

We both keep plugging along looking for the end of this tunnel. Most days are just about getting through the day and are pretty uneventful. There are days that both of us express just packing up and running away. Tyler continues to try and deal with the medical bills coming in and whether they are correct or should be paid for. Still waiting for information about disability payments and insurance reimbursements. I've sold my car and we have re-financed Tyler's car to get the monthly payments lower.

The Univ. of Colorado Hospital is doing pretty well so far. The VAD coordinators are great and we are just trying to learn a new system of who to bug about what and when. In comparison to St. Luke's I think what I miss is the "built-in" staff of doctors. The cardiologists, neurologist, pain medicine doctor, surgeons, fellows, physical therapists, etc. But basically we just have to set up that group in Colorado and rely more on the VAD coordinators, who will guide us through this process.

We had a small glitch when Tyler's Fentanyl patch strength was increased from 12mcg to 100 mcg. A little to much to say the least. Made Tyler clammy and nauseous and made him vomit. We went back to one of the 12mcg patches and are getting a new script for just 25mcg. This is in hope that with the slightly higher Fentanyl dose, he can reduce the Vicadin tablets.

So, my hope that 2010 would be all good news isn't quite coming true. But we are still here, in our house, and with our pets. Hopefully the good news for 2010 will be a new heart so that Tyler doesn't have to carry around batteries, I remain cancer free, and no more surgeries for Robert (and just one more for Tyler).

Robert

Pictures

A few pictures as I try to get the rest online. I now have a link above to see the pictures from Houston, or you can click here: Pictures

Tyler ready for one of our "pre-release" outings while at St. Luke's.

Tyler and Keith (another LVAD patient) in Tyler's hospital room.

Robert changing Tyler's dressing.

Tyler's scars and cord.

Janet and David (David has an LVAD also). Our neighbors and friends and most importantly, mentors, in Houston. They lived in the same apartment complex. Tyler is in the background doing what Tyler does best....talking.

Colorado - UCH

Tyler and I had our first full appointment with the University of Colorado Hospital staff. We met with the medical doctor, nurse, circ support, and the heart transplant coordinator. Tyler had a 40 minute echo-cardiogram and the LVAD rpms were adjusted a little higher, to 9600, which should give him a little more energy. As if he needed more! Very hard to get him to rest, but as he says .."I have things to do".
The UCH staff was very friendly and jovial. The interaction between them seemed very collegiate. The "appointment" only took four hours. We were very tired afterward and experienced a little of that "information overload" feeling again.

Tyler's blood work came back very good. All the levels are where they want him to be and his anemic level is getting better. After looking over the current medications, we were able to remove the Dipyridamole. UCH sent in the form to our utility company so that if the power goes out we are on the priority list. UCH is also contacting the Wheat Ridge paramedics to inform them of our situation and the LVAD.

We still have to go through a transplant evaluation before he is listed active again on the heart transplant list in the Denver region. That evaluation is now set for February 4th. We found out that there are currently 10 people active on the heart transplant list in the Denver region.

One of Tyler's "things to do" is going through the medical bills, which is becoming the most confusing aspect of this whole event. One bill came with just a line that said "Balance Forward" and no explanation of the charge. When Tyler called about the charge, the comment he got was: "Well, it is complicated." Well, if you want to get paid, uncomplicated it! It will take some more months to sort out what is actually owed and how much insurance is actually going to pay, so in the meantime the bills wll just have to be filed.

I had my oncology scans and am still cancer free. They did find a kidney stone and I'm going to have that checked out today. I guess I'm just trying to see if I can have as much pain as Tyler. It will make for a very loud household!

Robert

JOY! JOY! JOY!

As you all know, from this wonderful blog that Robert has created, that we are now home. I just want everyone to know, once again, how thankful I am for all of the love and support you have shown both of us during this time. I am working on contacting everyone personally.

I have been out and trying to get my strength back.

We will continue to need your prays and support as we get ready for my heart transplant. Thankfully it will be taking place here in Colorado. We are hopeful that we will be put back on the active list at the end of this month.

Again, thank you and we love you all!

Tyler

Good to be home

Tyler and I made it home on Tuesday the 12th around 4pm. We made the trip in two days and stopped for the night on Monday in Blackwell, OK. When we left Blackwell it was about 20 degrees and heavy fog. The fog lasted for a couple of hours on our drive and started to dissipate once we were on I-70 headed west. The closer we got to Colorado the sunnier and warmer it became. As we crossed the state line into Colorado it was 64 degrees and sunny. I'm counting this as a cosmic sign that we were supposed to be going home.

We are adjusting to being home and starting a new routine. Still unpacking and sorting through the mail that has piled up. I had an electrician install a grounded outlet in the bedroom for the power module and he also put it on a dedicated circuit. The placement is perfect and allows Tyler to reach all the rooms upstairs. The "kids" were very glad to see us and of course Toby was very happy to see Tyler again. DJ stayed at the house the first night and most of Wednesday to help out. He truly has been wonderful and I still can't believe he was able to move into the house during Act I and Act II of Tyler's Heart! Unfortunately for DJ there is some separation anxiety between him and Toby.

We met with one of the VAD Coordinators (Kathe) at University of Colorado Hospital (UCH) on Friday while having blood work done. UCH is located in Aurora which is on the east side of Denver, in a very new medical center/campus, and about 20 minutes away from our house. On January 25th we will meet with the doctors, VAD coordinators, and the transplant social workers. Tyler's results came back and his INR level is 1.5, white blood cell count good, and a bit anemic (but still in a good range).

Friends have started coming by to "lay hands" on Tyler, bring meals, and to start getting trained on the LVAD equipment so that they can take Tyler around town without me. We also were treated to hair cuts by Orlando which was very appreciated! I was able to get my blood work and X-ray done Thursday and have a CT scan on Monday followed by my oncology appointment next Wednesday.

So things are slowly getting to a "new normal" and now Act III starts - waiting for a heart.

Robert

Running Away

Wednesday was a long day. About 9:00am we parked at the O'Quinn tower building where Tyler has his cardio rehab and then walked over to St. Luke's to put in a request to get a copy of Tyler's medical records. As we were walking back to the O'Quinn tower we ran into a couple of Tyler's doctors who were very impressed at how well Tyler was doing and again mentioned the August conference that they are hoping Tyler can attend. Then Tyler went to his physical therapy appointment. They asked Tyler to do his "warm-up" exercises and we explained that we had just done that by walking back and forth from this building to the hospital and back. They couldn't believe we had already done that much walking and Tyler once again mentioned how mean his "at-home" nurse was to him. After his therapy appointment and meeting with a nutritionist, Julia (nurse from CV ICU) picked us up to go have lunch with her and her partner. We had a great lunch with them and then went back to the hospital to pick up the medical records. It was now about 1:45 pm. Walking through the lobby I noticed Tyler was slowing down a bit and remembered we needed to get back to the apartment soon for his afternoon meds. I asked if he would be okay if I got him a wheel chair. It took about a split second for him to agree. We got the medical records and wheeled over to the Q'Quinn building again and got home. Tyler promptly took his meds and a nap.

Thursday the LVAD clinic called to cancel our Friday appointment due to weather. We didn't understand this at all since it would have been only our second clinic visit and the weather was just cold. The explanation was that they were still having clinic but were worried about people coming from far away. I think they looked at the records and thought we were traveling from Colorado. We pretty much demanded that we keep our appointment.

Friday we went to our appointment with Janet and David, who gave us a lift to the hospital. As we were waiting for Dr. Kar, we were preparing for a "medical records" fight. We were under the impression that information was not being exchanged with Colorado and we were still determined to leave by January 23rd. The doctor came in and commented on how well Tyler was progressing. Still had low INR levels but it was expected and they were going to adjust the Coumadin again. He asked how Tyler's parents were doing and told Tyler to be nice to me. Then he mentioned that he understood we were both "chomping at the bit" to get home. He told us that he had been in touch with the doctor in Colorado and since things looked good we were released to go home. What?! Tyler told Dr. Kar that he wanted to respect the weekly appointments for the first four weeks. Dr. Kar said that wasn't necessary and we could go ahead and go. I'm hoping my mouth wasn't open for to long and mentally I was already on the interstate headed home.

We discussed leaving with Janet and David. Tyler seemed to me to be hesitating and he was thinking about staying for one more clinic visit. He especially wanted to get in some more physical therapy. Janet and David mentioned that we might not want to take the chance of waiting and running into bad weather. Based on my reaction Tyler switched gears and figured we might as well leave the next day. I finally thought things through and had to many things to "deconstruct" in order to leave Houston...closing up our "winter" home and my company's "Houston office". I still can't believe I had to put in a forwarding order for our Houston address. We have decided to leave Monday morning, January 11th. We will take at least two days to drive back and have identified the heart centers along the way in Dallas, Oklahoma City, and Wichita. And yes, I promise not to drive like I'm in the movie Cannonball Run. Well, for the most part.

I think I'm still in shock that we can go home. Could this particular chapter really be coming to a close? Are we seriously going home after almost 10 weeks? Will we have separation anxiety? How fast can we run away? Tyler even started packing after we got home.

We have met some really great people in Houston that we will indeed miss. Houston may be the fourth largest city in the U.S., have some really crappy roads, and freaky when it comes to cold weather, but Houston also has some of the nicest people we've met. Very caring and supportive. From St. Lukes staff (nurses, doctors, social workers, admin staff, coordinators, rehab staff), other patients (especially Janet and David), the Wells Fargo banker, and neighbors at the apartments. The Houston community really has some wonderful people that helped us out tremendously. Hopefully we can visit them in August if the conference presentation of Tyler's case happens.

But right now.....RUN AWAY....RUN AWAY!

Robert

Progressing towards January 23rd

Yea, I said (wrote) it! January 23rd. We have decided we are driving back to Denver on January 23rd. Granted, we set this date on our own, but we have to leave Houston sometime. As great as St. Luke's and Houston has been to us, it is still about time for us to leave. We are both getting extremely homesick.

It has now been two weeks out of the hospital and things are going well medically. Tyler keeps making progress and building his strength back. It has also been about 8 weeks from the open heart surgery and his chest seems to be healing well.

Tyler had his first LVAD clinic appointment that took about three hours. While waiting on the nurses and doctors to start rounds, the clinic took on a social atmosphere as patients started visiting each others exam rooms. It confused the staff since they would show up to an empty exam room and have to find the patients in the next room. The socializing was great and the medical parts went smoothly. The doctor adjusted Tyler's Coumadin to a higher level since we are determined to eat vegetables. I know, I know....those Colorado hippies and their vegetables. As long as we have a consistent diet the doctor said they could adjust to it.

After the clinic appointment, we went to register Tyler with the Cardio Rehab department so that Tyler has a supervised cardio therapy regimen. Of course we ran into some bureaucracy with that process but just enough to remind us that we are still in a medial system. His first workout was Tuesday and he did very well. We have gone to the apartment's fitness center a couple of times to do some light work outs and have taken a couple of walks. Tyler is able to walk faster and he is no longer using the walker. We got him a cane to use instead and he is now even getting to the point of not having to use that. He is now able to take standing showers without assistance and can stand in the kitchen to prepare meals. Good news for me! A few nights ago he experienced a lot of leg pain but the next morning was able to move his toes in his right foot, so it looks like more healing is taking place. Tyler still gets worn out but his stamina is increasing. His weight is still basically the same as when he left the hospital but we were told that is normal for the first couple of weeks.

We had an appointment with the pain management doctor and the Fentanyl dosage was reduced again. Tyler is trying to reduce the amount of Vicadin he takes everyday and has now taken over keeping track of his daily meds and logging his LVAD stats everyday.

We are still filing documents with the insurance companies to try and get back the money that was spent in Mexico and working on transferring care to Colorado. The University of Colorado Hospital is waiting for more medical records from St. Luke's so that they are ready for us when we get back. For some reason there appears to be hesitation by St. Luke's to send the information and we aren't sure why. I'm hoping we can keep this process moving along since, as I mentioned before, we have set a date to go home. I think 12 weeks is long enough for a vacation.

Robert