Another Procedure

Tyler had to go through another procedure and 3 nights in the hospital last week.   He had been in pain since the appendix surgery and they found an internal abscess/hematoma behind his bladder.
Below is Tyler's posting:
Surgery Again

Yes, another surgery, I don't know how much more my body can take.

Since my appendectomy, I have had severe abdominal pain.  Initially, I thought it was just recovery from the surgery and then I thought it might be a urinary tract infection.  I consulted my surgical office numerous times but no one seemed to take it seriously.  

Finally, through the persistance of my cardiologist, I had a CTScan and they found an abssess and it had to be immediately removed.

I was only in the hospital for 4 days but enough already.

As far as the cancer surgery goes, we have decided to wait for a while and get a second opinion.  Removal of the colon, although some what common is a major surgery.  And with the LVAD it is even more precarious.

After what we went through with the appendectomy and the complications of the appendectomy we think it is wise to get a second opinion and to make the right decision.

I also think my body needs to recovery fully before yet another surgery.

And then Cancer

Yep, I said it.  Cancer.
Tyler went for his appendix surgical follow-up on June 22nd.   The hospital had done a pathology on his appendix and found cancer.   It is an Appendix cancer and is very rare.  Found in about 1 percent of removed appendix.   The cancer was found all along the length of the appendix and may have been the cause of the appendicitis.  It is an Adenocarcinoma with Goblet cells.

Tyler called me while I was at a business lunch and said there was no easy way to tell me this, but "I have cancer".   Then he laughed a little.   Of course I said ... "Not funny."   He said what else could he do at this point but laugh.  The surgeon told him the treatment would be removal of the portion of his colon that had the cancer.

I didn't write about this in the blog sooner because we really didn't know what was about to happen.  What kind of cancer?  Had it spread?  What was the treatment?   How much of the colon would be removed?   Colostomy bag?  Why do we get to have all the fun!?

Tyler then started doing tests; Colonoscopy, some PET scan like thing, urine tests, blood tests, etc.   The colonoscopy came back normal, the scan came back normal, the other tests came back normal.  So a doctor called Tyler and let him know the good news was that they would just remove half his colon.  Tyler's response:  "Doesn't sound like good news to me!"

So we spent about three weeks saying "What?".   And we also spent three weeks going to dark places in our minds.   Does he really still have cancer?   Is it treatable?  Will he have yet another "bag" to carry around?   Do we prepare for the worst?

We decided this was enough of a "push" to get our paperwork in order.  Living wills, Advance directives, power of attorney's, Last Will and Testament.   Oh the fun of it all.  His parents unfortunately went on "alert" again.   Again, we decided to spread the word only so much since we didn't really understand what was about to happen.

On July 13, we went to see a surgical oncologist.  Please, oh please, explain this.   The doctor first came in and said when he first saw Tyler's case it was a "no-brainer".   Observation only.   Then he took it upon himself to contact Tyler's other doctors at the hospital to further discuss his case.  At that point he changed his mind.   Even though Tyler has an LVAD, his other doctors said he was very strong and should be able to handle surgery..... again.   So the doctor now was advising going ahead with the surgery.

The surgery would be a right hemicolectomy.  It would remove about 1/3 to 1/4 of his right colon.  If everything goes well there would be about 5 to 7 days in the hospital, no colostomy bag, and about two to four months recovery.  This is a preventative measure.   So at first, we thought  "forget it.... observation only."  The problem is that by the time a scan or other tests indicated the cancer had spread it would almost be to late to handle the problem.   We made another appointment with the doctor in about three weeks while we way the options.

The other issue is that with a cancer diagnosis, more than likely Tyler wouldn't be allowed on the heart transplant list.  Tyler and his cardiologist had already discussed waiting a while to see where technology went with heart pumps, so this wasn't as dire as the doctor thought it would be.  

At first Tyler thought he would just go the observation route.  But then after a little while he thought that would just delay the inevitable possibly and any pain he had he would think it was cancer.

So while a final decision hasn't been made yet, I believe we are leaning towards surgery.  Even though they want to treat it as an aggressive form of cancer, it appears we have a little time to think this through and schedule surgery.   Possibly beginning of September.

We are exhausted physically and mentally.   The doctor wants Tyler to fully recover from the appendix surgery (hence the three weeks before the next appointment).   One doctor commented that his colon was "pristine" and one of the blood tumor markers was elevated but not by much.  So it looks like we have a chance to catch our breath before the next surgery.

We have to go to the Hospital.

6/8/2011

Obviously it has been quite a while since October 2010.   Things have been going relatively smoothly since then.   There have been on again, off again issues with blood pressure and his INR (blood-clotting) levels.

Two days ago Tyler started complaining about a stomach ache.   You would think this would trigger something inside of me since it was in Cozumel that he started complaining about pain.   But we didn't know if it was something he ate, muscle strain, etc.

At 5am the next morning, Tyler woke me up and said "We have to go to the hospital now."  My reaction was simply to get up, get dressed, and go.   Okay, I did brew a cup of coffee.  Being panicked just doesn't happen anymore.  

At the ER, they started running test and put him on morphine and diloted for the pain.   His white blood cell count was up and they though it might be an infection.   I was worried that his drive line might have become infected.  Once Kathy, the LVAD nurse came, I went back to the house to take care of some things.   Then I got a call and he had appendicitis.  Man, Tyler's luck is something else!

Once I got back to the hospital (the Houston flashbacks were really starting to kick-in!), they were loading him up on Vitamin K to get his blood thicker.   Of course they took his INR in the morning and it was 2.2.  Finally got it to the right level and immediately they had to start reducing the level so he could go into surgery.

He went into surgery at about 4:40 pm and  I got to wait in the waiting room.   More flashbacks.  But, I had a good book to read.   I was asked later how I could concentrate on reading, but at this point I was just taking things in stride.   Nothing I could do at this point.

Surgery was over at about 6pm.  The appendix had not ruptured, but was seeping.   The surgeons were able to get the appendix out and clean the area up, and felt good about the surgery.  They had to do the old-fashion type of surgery (cutting instead of laparoscopy) due to not wanting to expose the LVAD to infection.   I saw Tyler in ICU and he was in immense pain.   I was told he wouldn't remember anything last evening, so I got out of there quick!   He was in good hands and I needed to get home.  Yeah!  I could actually go to my house this time!

Tyler has apologized to me for "messing-up" another celebration.   When we were in Cozumel, we were celebrating the end of my cancer.   This weekend we were going to celebrate my birthday.  Oh, well.   I more than fine with him being okay.  I talked with his mother and she asked me what I wanted for my birthday....if I had anything specific I may want.  My response was, "..in no particular order, a heart, appendix, or testicle would be just fine!".

Not sure how long he will have to stay in the hospital this time (hopefully less than 4 days).  Supposedly Tyler is the first LVAD patient to have an appendix removed.  Yeah!  Another milestone!  :-)   Tyler of course had already wooded the staff and some mentioned they couldn't wait to talk to him after surgery.  I warned them to temper their expectations.  Sure enough, right after surgery Tyler was trying to sit up, wanted to go walking, and informed the staff that the oxygen he was being given wasn't doing him any good!  I was asked if I could calm him down after relating a story about Houston in which I was called by an ICU nurse to come and calm him down.   I figured the only thing that would calm him down this time was pain meds!

He is doing well so far this morning and I think he will be fine.   He is very strong and should recover well.

R

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