Tyler's Heart

Pictures - Pictures from Houston.
LVAD Video - A YouTube video about living with an LVAD.
HeartMate II Video Clip - Short video clip about the pump Tyler has.

Another good blog to read is from our friend Bill. Cozumel Part 1 - This Might Be Habit Forming.

Tuesday, December 29, 2009


What a week it has been - free of needles, medicines, bad food, iv's and long nights. I am so thankful to be out of the hospital after 2 long months! I am thankful that I have had Robert to stand beside me and also guide me through this difficult process.

We have been staying in an apartment a few minutes away from all of the hospital facilities. Although a little outdated, the apartment is very comfortable and clean.
Physically, I am getting stronger everyday. Today, we purchased a cane, because I think in a few weeks, I will not need the walker at all. Emotionally, I remain to be pretty upbeat. Often, I get frustrated with the bureaucracy that the medical establishments make us go through, but I've only had to deal with it for a week. Robert and my parents have had to deal with it for over 2 months! I am working on just letting it go. There is nothing I can do about it.

Again I just want to thank everyone for all they have done for Robert and I during this difficult time. You know we will bounce back, but in the mean time we are so thankful for all of the support!

Monday, December 28, 2009

New Routine & Waiting

It has been 6 days since Tyler left the hospital. No alarms, no scares. Maybe one scare when Tyler hit the self-test button by accident in the middle of the night and all the alarms started testing. Neither of us panicked. I got up to check but before I got there Tyler had already figured out what had happened. We both went right back to sleep. Okay, maybe a few more scares when 6am, 9am, 2pm, 5pm, or 10pm comes around and the realization hits that medicine needs to be taken.

We went in for blood work Monday and there is a problem with his INR ratio which measures the coagulation properties of his blood. It is at 1.4 and I believe they would like it to be around 2.0. When he was still at the hospital it went down to 1.6 and they gave him a blood transfusion of about 2.5 pints. We don't want to do that again. Tyler was asked if he had been eating salads over the past couple of days. That is when we became aware that we shouldn't have been eating foods high in Vitamin K, like green vegetables, as it reacts to the Coumadin (blood thinner) medication. I say "aware" because we may have been told during the rush of information and forgot. So, no eating the good stuff anymore, like vegetables. We've looked up stuff high in Vitamin K and will be avoiding these.

We took a 40 minute walk outside of the apartment Sunday since it was a nice sunny day in the upper 60s. I guess doing the initial recovery in Houston isn't such a bad thing after all. Could be in Denver with snow and temperatures in just the 20s. Tyler is walking further and a little faster and better.

Wednesday we go to "clinic" which is the LVAD clinic appointment we will have every week. This is to make sure things still look good. Next week cardiac therapy begins.

I have run Tyler around on errands and he tends to get a bit car sick. I'm sure it has everything to do with the medicine and nothing to do with my driving.

We are trying to adjust to a new routine. Morning is made up of taking pills at 6am (then more sleep), then logging vitals like weight and temperature. Also running self-tests on the system controller and power module. Then trying to figure out the best way for Tyler to take a shower. Then the dressing change. Then pills at 9am. Figuring out what needs to be done that day....grocery store, set up doctor's appointments, PT exercises, Robert's work, dealing with Social Security forms, and more. Each day we get a little better at the new routine that will be with us until the heart transplant (which will then bring another different routine).

We are also now in a waiting period. Waiting to see if things go well during the next few weeks. Waiting to see if the transfer of care to Colorado will happen. Waiting to see when we can pack up the car and move to Denver. Hoping that we don't get too grouchy with each other.

But hopefully the days will become more routine even if it is still a weird.


Saturday, December 26, 2009

Halfway House

Tyler was discharged by the doctor from the hospital about 9:30am Wednesday.
We left about 12:30pm once all the paperwork was done and transportation (the hospital wheelchair ride) came to get Tyler. We almost got into trouble after packing up our stuff and just trying to leave. We just desperately wanted to get out of the hospital after 8 weeks of being there. Once we got to the main lobby I was asked to go get the car (from the garage) and then I could pick up Tyler. I had to explain that since the transport person wasn't trained with LVADs, Tyler had to stay with me. So Tyler and I walked to the garage again to get the car. We pulled up to the front entrance to get our stuff including the LVAD equipment (battery charger and power module). The transport person had left so I just went in and grabbed the wheelchair cart. Another person then started accosting me about "where is the patient?" I was loosing my temper and just said "in the car!" and continued to roll our stuff out. She was obviously freaked out a bit since this is not hospital policy and kept following me asking "where is the patient". I finally stopped and explained again that I can't leave the "patient" and that he was IN...THE...CAR. I was basically saying..."LEAVE ME ALONE". Felt almost like a prison break.

Before we left Tyler's hospital room, the doctor and social worker both commented that they had been in touch with the University of Colorado Hospital and were exchanging information. The doctor mentioned that we should be able to do about 4-5 clinic visits in Houston and if all went well should be able to transfer care and transplant lists, and finally get home. That would put us moving back home at the beginning of February 2010. At that time Tyler would have been away from the house for almost 3 1/2 months.

We then proceeded to get some lunch and go to the pharmacy to fill his prescriptions. We waited about an hour and a half at the pharmacy to get 14 prescriptions filled. This was cutting it close since Tyler needed to take two of the prescriptions right away. Once we finished at the pharmacy we went back to the apartment to unload everything we brought from the hospital. Then we went to the grocery store. Tyler had to stop a couple of times and rest at the grocery store while I was finishing up.

We then had to figure out how to make sure we were dispensing the right medicines at the right times, how to sleep (since Tyler can only sleep on his back or left side), and how to take a shower with all the LVAD equipment since it can't get wet.

While it is good to be out of the hospital and in our "halfway house", we now are adapting to another "chapter" of this experience. We will miss the nurses, PCA's, and staff a lot! As the days go by we are figuring out how to deal with everything step by step. It is amazing how the "little" things have become "big" things now. Just going to the grocery store takes a lot of thought and preparation.

The days in Houston will become "normal". Logging all the medicines taken and equipment settings, doing physical therapy exercises, and running errands. Janet brought over treats Thursday night and we took over Tyler's spaghetti sauce Friday night. Tyler was able to ascend the stairs to Janet's apartment, although slowly, but is still making progress walking around. I also called Mitzy Friday night and she has been able to go back to her house north of Houston. Her husband, Ben, was moved to a clinic near their house on Tuesday. Interesting that Mitzy and I arrived at St. Luke's the same night and for almost the same exact duration.

I have posted two links about the LVAD so people can get a glimpse of what it looks like and a video of a woman living with the LVAD.
Living with an LVAD
HeartMate II Video Clip

Now we hopefully can have successful clinic visits and start looking towards getting home. We are trying to determine if we are going to drive or fly home. Flying would be faster and would get us from big city to big city. But we would have to carry his LVAD equipment onto the plane and that will become a hassle. Also, we currently have Tyler's car in Houston and would have to figure out how to get that back to Denver so we would also have it there. Driving is simpler logistically, but means 20 hours (split over two or more days) through not the most populated areas of the county. I figure we made it from Cozumel to Houston unexpectedly so we should be able to deal with the unexpected.


Wednesday, December 23, 2009

I'll be home for Christmas - kinda

Tyler is still experiencing a sharp electrical type pain in his right leg but is able to move his foot more. He is using a cane or walker to move around but at least he is mobile. He continues to cut back on the pain medicine, but still gets waves of nausea every now and then.

I got back to Houston and went directly to the hospital since Tyler was holding the apartment keys hostage. Thank goodness because I had forgotten why I was in Houston. When I got to the hospital Tyler was having an echo-cardiogram done by order of Dr. Frasier. Dr. Frasier came in and adjusted Tyler's pump to see the effect while viewing the echo. He settled on 9400 RPM and again made a comment about maybe Tyler's heart could get some R&R and Tyler wouldn't need a transplant. Tyler thinks he can wrap his head around that. I think I can also!

After adjusting the pump and the echo, Tyler and I were going to go to dinner outside of the hospital. Before we could go, it dawned on me that they only adjusted the primary controller to 9400 and not the backup controller. So we waited for just a little bit to get that fixed. Dinner was good. Table with chairs for both of us. No candlelight, but a waiter. Salad came out first, then the main meal. A pleasant, non-hospital smell...could there be life outside of the hospital?

A special thanks to his mom and sister for staying with Tyler. They didn't necessarily come to Houston just so I could take a trip back to Denver...I think they may have wanted to see Tyler also. It was good to have the chance to go back to Denver and to come back to a cleaner apartment! They also left a really nice card for us. Weird circumstances but it has been good to really get to know them. They have been wonderful to me.

Tuesday was our 8 hour pass day. In the morning we asked about a handicap sticker for the car. The reaction was negative at first...."the doctor doesn't really like to issue handicap stickers....." Okay, okay. Can anyone look at more than just the top or bottom half of Tyler. Can anyone notice the walker, cane, and wheelchair in the room? Ay dios mio!
Also, a different doctor came in who didn't know about the Fentanyl patch Tyler is wearing. Once he looked, he noticed it was a 50mg patch and said that Tyler was going to have to be weened off of it. Tyler said "fine, as long as I don't have to stay in the hospital during the weening process." Otherwise I think he was just going to pull it off and say goodbye.

Tyler used his walker to go from his hospital room, all the way through the hospital, and through the garage to the car. It is a long walk but he did fine. Only once, stepping off a curb, did his left knee give him trouble. We went to the apartment and had lunch. Then watched a little bit of a movie before Tyler got tired and wanted to take a nap. After the nap we went to get him a hair cut, which he thoroughly enjoyed (especially getting his hair washed for real after two months). Finally something normal and usually inconsequential but yet another big step in recovery. After the hair-cut we went back to the apartment and hung out until about 7pm. Janet brought over some cookies and both of them gave me grief since Tyler had to get up and answer the door for her. I just considered that occupational therapy.....right?

Once we got back to the hospital the nurse tried to give him a 50mg Fentanyl patch, even though he was supposed to be weening off of Fentanyl. Both of us protested and finally they were able to bring him a 25mg patch.

Now the next big step (Christmas miracle?) is actually discharging him from the hospital, which we are doing today. I'm glad because I won't have to run back and forth to the hospital. Tyler, for some reason, is chomping at the bit to get out. We aren't home yet, but a least out of the hospital. Can anyone really believe it has been 8 1/2 weeks? So long, yet so fast. Maybe October 25, 2009 will finally be over soon! (Soon being a relative term these days).


Sunday, December 20, 2009


In response to the most recent posting...if my partner would have given me access to the passwords(he's become a little more controlling these days)then maybe I would have had an opportunity to write more(but I guess this blog is his "baby" - and me relinquishing some control could be a good thing). Also, I am somewhat intimidated by his ability to write creatively - since everyone seems so impressed by his writing style.

As you all know, I will be able to get out of the hospital on Wednesday and then Robert and I get to enjoy our Houston apartment together for 5 weeks(can't wait to be in a home). Although Robert says 1-2 months, I am going to be adamant about 5 weeks - because being out of the hospital is nice, but being in our own home in Denver will be much better! Although it's been a really long haul staying in the hospital for this long, I couldn't have asked for a more amazing nursing staff...God definitely brought me to the best place and I'm going to miss them (not too much though).

I also wanted to send out a big "Thank-you" to anyone and everyone who had anything to do with the fundraiser held at Rock Bottom - I was overwhelmed by the out-pouring of love and generosity from all of our friends. Truly, a "thank-you" will never be enough!
Cheers for now,


Saturday, December 19, 2009

Home Sick

Sorry for the delay....everything is okay. Didn't mean to worry anyone....just a bit tired. Besides, I thought someone (who shall remain nameless) was going to make another post. He may be dealing with some other important things. Or maybe he is just a slacker. Ha.

Tyler is still hanging in there. Still working on getting his legs stronger. He now has a knee brace on his left leg due to his knee buckling. His right leg, the one that had surgery, is still healing and still giving off a lot of pain. Seems like his chest is healing just fine. They are trying to work on the pain meds, but it appears the Darvaset makes him nauseous. But all in all....holding steady for now.

I have been able to take Tyler out of the hospital in a wheel chair a couple of times now. We didn't go to far from the hospital, but was able to go to Starbucks and wheel around a bit. During one of the excursions Tyler said "Can you believe I'm waiting on a hear?". My answer "No". It is still surreal.

The LVAD coordinator came to Tyler's room Wednesday and went over discharge procedures with us. Yes, I said "discharge". If everything holds steady we should be able to leave the hospital next Wednesday! Finally! Of course the coordinator got frustrated trying to talk to Tyler and me. She was giving us a knowledge test to make sure we knew the important things about the LVAD and life outside the hospital (supplies needed, etc.). Tyler kept peppering her with questions and changing topics and I was being a smart-ass with my answers to her questions. "How long does the internal battery on the power module last if there is a loss of power?" My answer: "Well, if we go by the manual that we were told to read, 30 minutes. If we go by what we have been told, 15 minutes. Guess it doesn't really matter as we will immediately switch to batteries and find power somewhere else." She counted our excursion on Wednesday as our 4 hour pass and when I get back to Houston, I'll take Tyler out for 8 hours and we'll be done. The coordinator was very nice in that she will be out of town next week and wanted to make sure she had signed off so we could be out of the hospital before Christmas.

His mom and sister flew into town on Wednesday. His mom just popped into Tyler's hospital room unannounced. At the time Tyler and Temple were standing up talking and it was great to see his mom's reaction to that. The last time she saw Tyler he was barely conscious and unable to talk. They are now entertaining Tyler (okay, helping Tyler), while I take a trip back to Denver. I'll be able to do some business, get some things for Tyler, and deal with the mounds of bills and statements at home. We will still have about another month or two to be in Houston but at least we are taking another positive step. Still working with the University of Colorado Hospital in figuring out how to transfer care back to Denver, so our 1 to 2 months doesn't turn into 6 to 8 months or more in Houston. Once we are discharged, we have once a week clinic appointments (to check on the pump, etc.) for about 4 weeks and then the appointments become once every two weeks for about another 4 times. Depends on how Tyler is doing as to how long this will take. He is also scheduling out-patient cardiac rehab during this time so he can get stronger.

Being in the house without Tyler is weird. I've had a couple of moments where I expected Tyler to be here or to come back from a client appointment. Tyler is homesick but said he was glad I went to Denver to check on things. Most, if not all, of the other LVAD patients have been discharged so Tyler doesn't have his buddies to talk to when walking around the floor. Kinda lonely.

We still have a long way to go and that is not even including waiting for a heart transplant. Hopefully in the next two months he will become active again on the transplant list. Although...the nurses are now able to take his pulse without using the Doppler method. Hopefully a good sign that his left ventricle is pumping better. Fingers crossed!


Monday, December 14, 2009

Improving - Regular Days?

12/10/2009 - 12/12/2009
On Friday Tyler was able to do more laps walking around the 12th floor of the hospital. He is still using a walker and it causes his foot to swell but he is getting better and better. He also got into trouble for re-arranging the furniture in his room (a no-no for open heart surgery patients). He is also now off the IV and only taking his medication by pills. So now he only has the LVAD controller and EKG monitoring wires to deal with.

Tyler also told the staff to get rid of the contraption above his bed. Since he had leg surgery, one of the doctors ordered a pull-up device to hang over his bed so that he could use his arms to get himself out of the bed. Tyler said he wasn't going to pay for its use since he shouldn't be using his arms like that (due to open heart surgery), and that it was ridiculous that it was ordered.

We also got to put on our rings again. Lucy and I were able to take him out in a wheel chair to look at the Christmas lights around the hospital. It was a 30 minute excursion but nice to get him out of his room. Of course we also got to have excitement when we got back to his room. Tyler and I were switching from batteries to the main power unit. The system controller has two leads that supply power to his heart pump. I disconnected the first lead and at the same time Tyler disconnected the battery from the other lead. The "red heart alarm" went off, which means we stopped his pump. Within one second we had the power back to the pump and I collapsed into a chair....sweating. So, we got to experience the top level alarm in the hospital, didn't panic, and got power back to the pump. We also learned that only one person at a time should be fooling with the cables. I feel I'm comfortable changing the power source and will just let Tyler do this from now on.

Oh, and Tyler is not going to the 17th physical rehab floor now because we were told the nurses on that floor are not currently trained on LVAD patients. No, wait a minute, he should be able to go to the 17th floor according to one of the transplant surgeons. Ahhhh, the confusion continues. Hopefully he will make it to that floor soon or better yet out of the hospital.

Early afternoon Tyler and I got to take a nap together. Both of us were exhausted and Tyler had just done 6 continuous laps around the 12th floor, using his walker. The side effect though is being worn out and his foot swelling again. During the nap Tyler had a dream about having a heart attack. I still can't imagine what it must be like for Tyler.

Tyler and I went on another excursion outside the hospital and I'm hoping the next excursion will be to go further down the street. Maybe get a Starbucks coffee, eat at Chipolte, or have lunch somewhere together.

Got a call from DJ that there wasn't any water pressure in the house. He had already called Dave and Karen (from across the street). Sounded like a main broke or pipe burst. I could only imagine how much flooding was taking place.

Found out it was the water supply to the sprinklers. There is a valve in the crawl space that I turn off in the winter every year. There wasn't a pipe that burst, just a connector hose outside that supplies water to the sprinklers. DJ was able to go into the crawl space and turn off the valve and Dave helped to start getting the water that was pooling next to the house pumped out into the yard.

So, all crises have been averted for today. I had a moment where I thought about all the positive things that are happening around us, instead of just the horrible things. The most important is the friends and family that have jumped into action along with us or have been ready to jump in when called upon. Also all of the wonderful people in Houston (nurses, staff, bankers...) that have worked with me to protect as best as possible our interests. And the chance once again for Tyler and I to drive each other crazy. Okay, I'll be nice, the chance for Tyler and I to start moving towards getting back to Denver and starting our lives again....whatever that life may turn out to be.

Tyler was put on some medication for the foot swelling and bed rest was ordered today. The swelling has gone down a lot. I've booked another flight to run back to Denver towards the end of this week. This will give me a chance to do a couple of work things I can't do in Houston and to pick up some more of Tyler's stuff for when he is released from the hospital (hopefully in another week!).

Thursday, December 10, 2009

Off the Roller Coaster?

12/09 - 12/10
It has felt over the past couple of days that the roller coaster ride is coming to an end. Now, maybe we'll just try the tilt-a-whirl. Instead of up and down, we'll just try spinning in different directions?

Tyler continues to improve. Appetite is up, gaining some weight, looking better and his hand writing is getting better. He continues to have problems with his right foot that is swollen, numb on the bottom, yet still feels pain in his toes and on the sides of his foot. He received a blood transfusion of about 2-3 pints since he has gradually lost some blood and his red blood cell count was low. The nurses went through 6 attempts to get an IV into him and it was painful to watch. He told them the sixth time was going to be the last if they couldn't get it in. His veins are hard to hit now and it took a nurse from IV Therapy to finally get the IV in.

Obviously he is getting a bit grumpy with all that is going on. Wonder why? He had a doctor tell him that he would never be able to drive a car without hand controls, since he wouldn't be able to use the pedals. This upset Tyler a lot. But this doctor isn't a neurologist or orthopedic doctor or a physical therapist. Tyler has come a lot further than any of the doctors originally thought, so this is just one more thing to prove the doctor wrong. His occupational therapist also told Tyler that the more therapy he does the better chance of recovering the use of his foot.

He took out some of his frustration on his occupational therapist and social worker that were in the room. They took it in stride, but I did notice they left me alone in the room and went into the hallway to look at Tyler's chart. I reminded Tyler that these were the people who were helping us out the most. He took a deep breath (metaphorically) and then apologized to them when they came back into the room. This not withstanding, he still is not shy about staying in charge of his medical treatment which is a good thing.

While the social worker was in the hall, she motioned for me to come out into the hallway. She was concerned with Tyler's face and speech. I told her that he keeps getting dry mouth and the moment he takes a sip of water he is fine. She wasn't buying this and went to get Tyler's nurse, Greg. Greg came in and did a quick test to see if Tyler had (or was having) a stroke. He made Tyler move his head around, some other stuff, and to follow Greg's finger with his eyes. Then Greg shook his finger rapidly from side to side. Tyler just looked at me and said "...Greg is real funny once you get to know him." Made Greg and I laugh. Greg was able to find the medicine that has the dry mouth side effect and they were going to try and cut back on that.

Tyler has also met with the neurologist and a pain management team. He was told that it takes a nerve one month to repair one inch. He has 18 inches of damaged nerve to go. So in about 18 months we will know how much damage is permanent. It now appears that Tyler will move to another floor that is dedicated to physical therapy. This way he will get 3 hours of therapy time versus about 30 minutes now. Approvals have to take place but it looks good so far that he might be moved this coming Monday. I'm so excited as I haven't been on the 17th floor yet and just hate to think that we would finally go home and not have been on every possible floor and colored elevator that St. Luke's has to offer! Tyler was also able to walk around the 12th floor for 3 laps twice today. He started having more pain and numbness towards the end but this is a big leap. He also got into trouble for redecorating the room. He was moving around chairs and stuff because, like me, he can't stand the clutter. But he shouldn't be moving or lifting anything that is more than about 5 lbs.

Kristina, from the Rock Bottom past, sent me a contact at the University of Colorado Hospital. Yesterday I got in touch with Ann, the VAD/Circulatory Support person at the University of Colorado Hospital. Ann was really nice. She said we shouldn't have a problem transferring his care back to Denver. She called back asking for phone numbers for some of the doctors and staff and let me know that she had talked to the transplant surgeon already. The doctor even said..."is this the guy who worked at Rock Bottom Brewery? Of course we will take him." Whew! She is already putting the wheels in motion so that hopefully we can make it back to Denver. Maybe by end of January/beginning of February. At least that is the moving target we keep trying for.

Lucy is now in town and hanging out with Tyler. This gave me some time today to catch up with things. Called the mortgage company, did laundry, called the bank, cleaned the bathroom, had a business call, and did some work. Getting closer...

So, today was a good day. Yesterday was an okay day. But it seems the days are maybe (do I dare say this) leveling out a bit. There are still shocks that come in but I think our defense shields are holding up better. I'm glad we are on a tilt-a-whirl now. Now if we can just get back to the merry-go-round!


Tuesday, December 8, 2009

Movin' on Up!

Finally, I am able to write. Robert had to go back to Denver and I had no idea how to log on to this. (typical Tyler)..............

Last Friday I had surgery on my leg and they removed a blood clot. That seems to be healing well but now my foot is twice the size it should be. I have no feeling in the bottom of my foot and the pain in my toes is unbearable.

It has been a difficult week: full of pain; anxiety; sleepless nights; and not knowing when I will be able to come back to Denver. Today was a GREAT day. I walked with a walker a little and I road the bicycle for 20 minutes. Of course I feel the pain now but it is worth it.

Well time to go....as the tremors are getting worse.

I love you all.


Monday, December 7, 2009

Back to Houston

Tyler had a rough day on Sunday. Foot and ankle was swollen and still in pain. Tried physical therapy but then his left knee buckled and he fell again. Was taken for CT Scan and X-ray. Also, his blood pressure dropped again. He was put back into the bed and hopefully today will be better.

The fund raiser was held last night and there were a lot of people in attendance. A good portion of the people I hadn't met before but had heard about from Tyler. When I entered I was in the back and the emcee was reading an email I had sent to Lucy and Nicole. I thought I was just going to give some insight for the emcee to use but he read the email verbatim. I was taken aback and had to leave for a moment. The email I sent is below. When I came back the emcee was still reading the email (I tend to be long-winded) and it was good to see people agreeing and laughing at the comments I had made. I thought I would be able to take the microphone, thank everyone, and give an update about Tyler. I just blubbered like an idiot. After that great performance I was able to mingle around a bit and meet a lot of great people. It was wonderful to see how many people came out on a cold snowy day in Denver in support of us. I also know that there were some from far away that couldn't make it and I completely understand.

The support has been wonderful from near and far. I really continue to grapple with trying to express my appreciation and heart-felt thanks to everyone who is helping out. Nicole and Lucy did a great job of organizing the fund raiser and it has bowled over Tyler and I. To everyone, thank you, thank you, thank you!

I'm flying back to Houston today and am just hoping this is a better day for Tyler.

The email that was read at the event:
Tyler is an extrovert and introvert.  

He loves people and lots of them.  He likes to have people surrounding him and can be a non-stop talker on the phone (likes to gossip).  He made the comment just months after moving into our house, “We haven’t met our neighbors.  When are we going to meet our neighbors.”  Of course now he has met all the neighbors and likes to distribute the fruit from our trees to everyone, discuss yard care, trade vegetables, on and on.
He misses living at his old condo complex and the people there.

He is a charmer.  Even in his unconscious state he made friends with the nursing staff.  Even conscious and demanding the nurses and staff love him.  He is able to be demanding yet make the person still want to help.  
Tyler and I went to a brunch with friends Melissa and Scott.  Tyler noticed the waiter had tended to two other tables before us, even though we had been seated first.  When the waiter approached our table Tyler said “We’ve been waiting and you took the other tables orders before us.  I worked in the restaurant industry, at Rock Bottom Brewery, and I just think it is unacceptable to have made us wait.”   The waiter took our drink order and left.  Tyler got up to go to the bathroom and Melissa and Scott looked at me.  I said, “just wait”.  By the middle of the brunch Tyler and the waiter were like old friends.  
He LOVES the Rock Bottom Brewery and the friends he made there.  He is a bit bossy and has been referred to as a “pit bull” by one of his contacts at BOAA Construction.  He is demanding of people and usually gets the best out of people.  He is also tough and caring in a big brother sort of way.

Extremely expressive.  Has phrases such as, “That’s ridiculous!”, “I’m starving!”,  “No!” (said with a particular inflection), “This is the BEST (insert object/meal/etc.) I’ve ever had!” (then the next thing the next day is “The BEST I’ve ever had”).   He can be very opinionated.  Many times I’ve been ready to leave for something and he looks at me and says....”what are you wearing?!  No.”  Clients have wanted particular things and have asked Tyler’s opinion and he was never shy in saying “No, you don’t really want that.  That won’t work.  Here is what you want.”

He always wants to contribute to causes and get people gifts.  “We should donate money to this, we should donate money to that.”   We have been to the Max Fund No-kill shelter benefit the past two years, he has donated money for politics,  he has donated money to cancer causes, wants to donate money to the latest cause talked about on 60 minutes, and adopted animals.  Couldn’t stand that the black lab next door was lonely after his owner passed away.  Now we have Bowser (the lab) living with us.  He wants to feed the stray cats in the neighborhood.  He wanted to take care of a squirrel that for some reason came up to him when we were living at the condo.....to the point that I had to put up with this squirrel spending the night in a shoe box in the bed room.  He truly has a tender heart (no pun intended).

He also is a “home body”.  Loves his house and family.  First concerns when becoming conscious were the animals and the house (especially Toby, our beagle).  Loves working in the yard and loves going to the Ameristar casino in Central City.  Can spend hours (and I mean 10 hours +) playing video poker and slots.  
He likes things to be in an orderly way.  A bit OCD.  The hanging shirts have to be in a certain order based on a combination of sleeve length, shirt type, and color scheme.

He loves watching his TV shows (Biggest Looser, Amazing Race, Grey’s Anatomy, crime stories, Intervention,....).  We always have a back log of shows and movies to watch because he likes so many of them.  Would always make sure his shows were being recorded when we would go out to dinner or hang with friends.   Hyper and ADD.  He can’t sit still through movies, always hoping up and down because he has “things to do”.  
He has redesigned our house many, many times.  Every time I would come back from a business trip, the house would be different, even if in a microscopic way.  Then he would feign disgust that I didn’t notice the change right away.

He gets lonely when I’m gone for a business trip and likes to surround himself with the animals and friends.  
Great interior designer.  Brings a homey, personal touch to each project.  Always makes friends with his clients.
He is smart and worked extremely hard to build up his business.  He comes up with different ideas constantly about how to enhance the business.  I have no doubt Tyler will be able to rebuild a business once he recovers.

He is tough and a survivor.  He has come through rehab and alcoholism and will come through this also.  We have survived 2009 starting off with ELE (Tyler’s cat of almost 13 years and mine of about 6 years) being killed in the front yard by a coyote, my cancer surgery and chemo, the ups and downs of both of our small businesses, and now heart surgery and waiting on a heart transplant.   He is taking charge of his care and dealing with the pump in his heart and the cord coming out of his body.

Sunday, December 6, 2009

In Denver

I decided to come back for the weekend. It was hard leaving Tyler again, especially since no one is in Houston. Okay, the professionals are there.

And of course it is snowing in Denver. Hopefully it won't be to much. I plan on attending the benefit tonight at Rock Bottom and kinda kept my coming back a secret. Didn't know if I would make it back and just wanted to sit quietly in DJ's house...I mean mine and Tyler's house. Feels very weird. Waking up this morning I was hoping that the last 6 weeks had been a dream. Guess not.

Tyler was still in pain yesterday but was moved back to the 12th floor. He harassed the 2nd floor nurse, Zereena, to let me come back for visitation since I was leaving. The nurse called me and almost begged me to come back!

He is eating a lot better. He was moving his right foot better also. He is still having some trembling from the drugs and it makes it hard for him to type on the laptop. I talked to him this morning and he seems to have lost some feeling again in his foot.

Tyler is starting to grapple with what the future holds, what bills are due, what he owes to everyone and how to get it done.

Dr. Karr showed Tyler and I a cardiogram of a beating heart. He then showed us Tyler's heart when he came in that first night. It was just sitting there doing nothing. The doctor said it was divine intervention that Tyler was here with us.

Janet, whose husband has an LVAD also, graciously visited Tyler last night and took him some home-made spaghetti. Very nice and Tyler said it was great.

So, I'm hoping to see a lot of people tonight and be able to express our thanks for all the support. Tyler and I both still feeling very odd at being in this position but know we can't do this alone.


Friday, December 4, 2009

Leg Surgery

Tyler had surgery today on his leg today. Got through surgery fine. The nerve they were looking at also looks fine. They said it appears he has had some arterial damage from some blood clot (side effect of the LVAD). Again, they are still not sure exactly what happened. The orthopedic nurse told me that he may need a brace (small plastic shoe insert) for walking. And that it may take from many months to a year to see if the nerve returns. The orthopedic nurse explained that he will be able to adapt to this and that physical therapy should resume next week. The neurologist (Dr. Irr) will have to now step back in and see why the nerve is causing so much pain. They found some dead muscle tissue in the calf but not extensive. Basically Tyler may have problems flexing his foot. They are also concerned with some blood flow to the big and little toe on his right foot but so far his color has remained good. I'm not to worried about the toes. The medicine Tyler had been put on a couple of days ago was making him tremble. This may have messed up the test results.

The nurses on the 12th floor asked how I was doing today and looked very concerned. I didn't understand why until they told me that Tyler was very concerned about me. Wow. I remember how concerned I was about him during my chemo treatments. Turn-about is fair play?

Tyler is back on the 2nd floor in CV-ICU. And to top it all off, in the same bed as when he first arrived in Houston. What kind of irony is that!
The cardiac surgeon came in and asked Tyler to push his foot forward and backward. Caused Tyler a lot of pain but he was able to move the foot. Not as much as his left foot but still movement. He is in a lot of pain and described the pain as a shooting hot pain on his leg. I'm hoping things get better with his leg and foot. I think Tyler has the motivation and spirit to make it get better.

He will be in CV-ICU overnight for observation and then be able to go back to his room on the 12th floor tomorrow.
His nurse tonight has a dog that she treats just like Tyler treats Toby. I think they will get along just fine. We showed each other pictures on our phones of our dogs. Larry Brown, the cath lab nurse that presented Tyler's case at the symposium last month came up to see how Tyler was doing and.....to ask Tyler if he would be willing to go to a conference they are having in August in Houston. I mean really!! Tyler the "Rock Star" lives on. They would fly him to Houston so that the conference attendees can hear about his case and see him walking around. Very impressive.

Tyler called me from his bed tonight. It finally dawned on me that he was calling from his cell phone. I asked how he got his phone. A nurse from the second floor went up to the room and got the phone for him. Thing is, I had put his phone in a small cubbyhole that has a door on it. The nurse must have had a great time trying to find that! Did I mention I'm in love with the nurses and support staff. He is getting anxious about the future and our new reality. We both still desperately want to hold onto the house and be back in Denver with our friends. Only time will tell how long that is actually going to take, but it is good to have a goal!


Thursday, December 3, 2009

A better day?

Thanks to everyone for letting me rant in my last post. I got my fears and stress out and feel better today. Hope I didn't scare to many people (including Tyler....I know you are reading this! Great, I'm going to have to only tell good Tyler stories now!)

Tyler did not have surgery today....again! They decided to try and aspirate the area in his leg, but were only able to get a little blood out. They think the problem is still a cyst or something in the muscle. So guess what.....surgery scheduled for tomorrow (third time is the charm!) The doctors are still worried about the anesthesia that Tyler will be under and the blood thinners he has been on. They had reduced the blood thinners a couple of days ago so I'm very hopeful he will be fine. We are both really praying that this gets resolved tomorrow. He is still in a lot of pain but hanging in there. Seems like his spirit is holding together and getting all the cards, email, and e-greetings is helping a lot.

Tyler is doing better than me on keeping up with all his "numbers". His INR is this, his blah blah is that. He knows what meds he is taking, what they do, and when they are scheduled. He goes over the details with each nurse, each shift and really seems to be taking control of things. The nurses and therapist seem to be hanging in there with him and are great at going over things. I know I should be keeping up with this also, but I'm just enjoying talking with Tyler and watching him....hoping he gets better and better. His appetite is also better and I'm getting to hear "I'm...starving!" again (yea).

We were able to get some more things taken care of and the list is getting shorter. We are both still amazed at how the fundraiser on Sunday is taking shape. We have gone to Max Fund's benefit (no-kill shelter) twice and know that side of a benefit/fundraiser. So it is an odd feeling to be on the other side of a benefit. It is an odd, humbling experience but in a good, positive way.

Tyler was very nice to me and gave me the "night off". I went back to the apartment (I refuse to call it "home") and was able to start tying up some loose ends and get my notes together.

So, it was not great that the aspiration wasn't all we had hoped for but at least there is actual action being taken on the problem. I got to sit next to his bed as he slept this afternoon (I think due to new meds) and got to watch a fascinating show on counterfeiting money. Hmmmmm, interesting idea. We got to spend more time together without a ton of interruptions. So it was a better day. I think.


Tuesday, December 1, 2009

Loosing Faith

Note: Please understand the following is an expression of my anger phase.

This is never ending. There is to much to do. I have no faith anymore that this is doable. I want to strangle all the staff at St. Luke's. (A side note: the nurses and PCAs continue to be wonderful. Caring, attentive, helpful with local information.)

I want to go f'ing home! I want Tyler out of this hospital. I want to know what we did that was so bad to be put in this situation. I want the phrase "..works in mysterious ways" to actually mean something. I want to know what I'm supposed to be doing and striving for.

Tyler was going to have surgery today (12/2/2009) on his leg. Well, I guess not. His blood clotting factor is not high/low enough. Maybe tomorrow. Thank goodness that the doctors have been so "proactive" as to wait two weeks to deal with this. Thank goodness that it didn't take both Tyler and I complaining (it did!) to get the doctors to pay attention.
So St. Luke's can replace organs including a heart, but can't figure out how to deal with a blood clot/cyst in a leg. Hmmmm, maybe we should be in Denver for the leg and Houston for the heart. What is one more thing to deal with?

To do:
Make sure to watch the LVAD DVD with Tyler.
Make sure to learn how to change his wound dressing every day.
Go to the LVAD class.
Figure out what we'll need if we can ever get back home. Can we transfer care and be on a transplant list to Denver? Is that the right thing to do?
Deal with finances to make sure Tyler and I's bills hold steady until, what, medical bankruptcy?
Remember to thank the wonderful people who have already donated to Tyler and I, and who understand/accept our relationship. Remember to look past those people who don't understand.
Remember to thank those people in our community that have done everything they can to guide us through the "system". Even the Wells Fargo banker is going out of his way to help us try and hold it together.

Remember to try and figure out how to deal with my cancer treatment (Ha!).
Remember to take this day by day (the hardest part)!

Deal with comments from St. Luke's:
"We are working on getting you guys back to Denver and back to your old life....."
"Well, you should be going home next week, next month, yesterday, next year..."
"Well, the doctors get possessive and may not want you to transfer your care to Denver."

Can anyone one say indentured servant? Guinea pig?

Deal with trying to work so I can still bring in income.
From the internet provider in Houston: "Static IP? What is that? No one asks for a static IP here in Houston." In what suburb of hell have we landed?

Both Tyler and I have become very frustrated and angry with the situation and the responses we are getting. No straight answers....ever. And then we have the audacity to say to St. Luke's that we want to go home. And further more, where have the doctors that are so "possessive" gone? It seems the only doctor that has any interest is the neurologist. The others send surrogates who don't know what is going on and step into the room for a second and then leave, without saying a word. I don't think Tyler and I are asking to much to be informed about what is going on. Why do we have to constantly complain to get any attention? Why does Tyler have to say to the lead doctor, "....well, I'm not leaving this hospital with a fake heart AND a bum leg!", before the doctor pays attention?

Tyler is lonely and anxious. Nicole coming out helped a lot. I want to be there to help him through this, but my days are spent putting out fires, avoiding new ones, figuring out how to get back to Denver, figuring out how to live in Houston if we get stuck here. Juggling and fighting with insurance companies, mortgage companies, banks. Slashing expenses as fast and as deep as I can.

When? Where? How? All the questions that have still to be answered.
When can we get out of the hospital? When will they deal with Tyler's leg? How soon can Tyler start physical therapy again? How do we get back to Denver and our home? What is life going to be like?

Get Social Security Disability filed. Get Wells Fargo checking handled. Get SUV loan handled, mortgage handled, phone, utilities, house, condo, Houston, medical, mental....on and on and on. I would do this over and over again for Tyler and I. It sucks, but this is where we are at. And "so it is".

Okay, rant over.

Tyler made Denver news. In the December 1st, 2009 paper, a regular columnist (Penny Parker) mentioned Tyler and the fund raiser at Rock Bottom Brewery. There are several people working very hard to make this a success. My thanks to them and to Rock Bottom for doing this. It is the love and support of friends and family that will get us through this.

I spent the night in the hospital room with Tyler, on the torture twin bed couch thingy. It was nice to at least be close to Tyler overnight. I'm trying to figure out how to schedule my day so that I can be with him at night. I'm also trying to keep his room straightened up. Most of the staff just throws stuff into his room and it is a pile of clutter when I get there (oops, another rant slipped in). He is still in a lot of pain and stuck in that bed. This is not Tyler. He keeps pushing himself to do as much for himself as possible. He gets dehydrated but he isn't supposed to drink so much water as his sodium levels are low.

We will overcome this, if for no other reason than to spite the universe that has put us in this situation! I know that support is out there. I know that Tyler is a fighter. I know that something will come of this that is meant to be. I'm just hitting a large speed bump in this event. Tyler and I will be okay.....someday.

(Final Note: Please, please, do not freak out about this posting. Just needed to unload so that I can take the next baby step.)