On September 11th I completed my Heart Surgery Adventure.  I posted my first blog entry on January 10th of this year explaining that I would be going in for open heart surgery.  I had created a list of things to do before going into the hospital.  At the top of my list was to set the goal of riding the LOTOJA Classic 2010 bike race.  There was no way that I could ride the 206 miles solo this year, so I asked three friends if they would be willing to ride with me as a relay team.   When Heather, Liza, and Cheryl said “yes” to my request, I think they were just humoring me.  It was only January and the race was not until September and I had not even had the surgery yet. So that meant there was a lot of time for me to change my mind.

What they did not know then, but do now, is that getting back on my bike with this goal in mind probably saved my life.  No matter how bad things got or how many tubes I was connected to, I got out of bed knowing I had to walk before I could ride. Pushing all the machines around with me was a new kind of “support Crew” job for my husband.  Normally his job as my support crew on a 100 mile ride would be to get my food and water from one feed zone to another. Matt was awesome at maneuvering the equipment, allowing me to speed walk through the hospital hallways.  I probably hold the record for both the fastest lap (while connected to multiple machines) and the most laps walked on floor 10 Long at UCSF. 

When I finally did leave the hospital, the first thing I did was get on the spin bike though the ride was just a few minutes. That led to a few miles on my mountain bike.  Then finally I was feeling good and spending more time on my road bike.  Now I was really training!

I went through and re-read my blog entries, it turns out that I never thought about recovering from the heart and lung surgeries.  Instead, I was always thinking about training for the bike race and reaching that goal.  Every day, with the LOTOJA and my team in mind, I got out and rode my bike. I could tell I was getting stronger, though that is not to say that on many days it HURT and still does.  But I am still alive!

Next thing I knew, it was September and we had the logistics of getting all four of us girls to the event.  With all the possible points of failure we could have had, the team worked like a well oiled machine!  We did not have any drama and each person took the leg that matched their skills. 

Heather, our first rider, needed to be at the starting line at 5:45 am and it was only 34 degrees.  Cheryl went next and rode 46 miles of really BIG hills with really terrifying FAST down hills.  Liza took it from there to ride the next big mountain leg. She had the ride of her life and surprised us with how fast she covered her 45 miles.  Heather did a second ride as there were five legs and only four riders.  She was warm and awake and she flew! 

Last but not least it was my turn.  I was scared because I had no idea how long it would take me to ride 47 miles.  I knew that I needed to finish before dark.  So I decided to go prepared…  I had a Camelback that I stuffed with food, water, extra clothes, phone, IPod, money and credit cards.   All the other riders had two water bottles on their bike.  I was packed and ready to be gone for the weekend. 

As it turns out the weather was perfect and I felt great.  I had estimated that it would take me 3 – 3 ½ hours to finish.  As I got close I could tell that I was going to come in at 2 ½ hours.  When I saw the finish line I lost it.  Big happy tears were streaming down my face.  I did it! And I rode it like a healthy person, not someone that is a victim of heart disease.  All the emotion of everything that I had survived this year just bubbled out.  The best part of getting back on my bike was finding “me” again.  When I crossed the LOTOJA finish line, I knew I would be ok.  Dealing with heart stuff will always be a part of my life, but it is just a small part.

So the question is:  Now What?  Well I am getting involved with the American Heart Association and the Go Red / Red Dress for Women campaign.  I figure I can use my new wisdom to help inspire, empower and education people about surviving and living a full life with heart disease.  I will be speaking and telling my story at upcoming Go Red functions.  Also, I am raising money for the upcoming Heart Walk on October 16th http://www.lvheartwalk.kintera.org/heididohse . Any amount is appreciated!

And of course, I am working on selecting my next cycling event... working up to a 100 mile ride next!

Thank you to all who have followed me from the beginning of this adventure all the way to the successful conclusion. 

P.S. A huge THANK YOU to Matt, Frank, and Ian for being our Support Crew on this race.  We could not have done it without you.  Also, check out the awesome video that Ian created of the day: http://www.youtube.com/watch?v=ka_dFr8cs_Y

A funny thing happened when I went in for my six month follow up appointment with the doctor after having open heart surgery in February.  The purpose of this surgery was to rebuild a blocked subclavian vein, by pass other veins, and remove a rib to fix my thoracic outlet syndrome issues.  Because the veins that they needed to rebuild were so large the doctors used donor aorta tissue. 

Anyway, the funny part is that it turns out my body did not like the donor tissue and has closed the rebuilt veins.  I am now having difficulty breathing when exercising and am kind of back to square one.  This is where it gets hilarious:  Prior to the surgery I wrote that I just needed an inhaler and it was probably just asthma.  As it turns out the doctor just prescribed me an inhaler and said I currently have medically created asthma. Is anybody else laughing?

There are additional tests and surgery they would like to perform, however due to the number of major surgeries I have had this year, the doctor would like to wait until next year. *sigh* 

So - I am just focused on the positive side effects:  I think I have enough experience now to be a motivational speaker, plus it was like going off to “fat camp”.  What wouldn’t you do to lose 25 lbs? Besides, I was pretty much unconscious for the first half of the year.  Though I have to say, I could have done without the chest / lung surgery I had in May.  I did not write much about that hospital adventure because I have tried to block it from my mind.  Let’s just say that it was so painful that it made open heart surgery seem like a piece of cake. 

The good news is that none of the surgeries kept me from getting back on my bike and riding.   I did complete my goal of riding 50 miles on August 20

^th.  It was a few weeks later then my original date of July but the lung surgery delayed things a bit.  Now the BIG bike race is this Saturday!  I cannot believe it is here and that I am healthy enough to make it!  There was a time back in April when I rode 6 miles and it was REALLY hard.  I never thought that I would be out riding 35 miles a day and feeling great.  Once the bike race is completed I will go back to the moderate walking the doctors had suggested I do for recovery.

Speaking of moderate walking – I am participating in the American Heart Association’s “Heart Walk” this year on October 16

^th http://www.lvheartwalk.kintera.org/heididohse.  I guess I need to admit that I am a heart survivor and use my experiences to help others.  If you would like to donate to support the American Heart Association and my Heart Walk fundraising goal you can go to my website.  Good wishes and prayers are always welcome! 

It has been an amazing year full of ups and downs.  I want to thank everyone for their support in helping me get through these adventures.  I especially want to thank Heather, Cheryl and Liza for signing up to side the LOTOJA Classic with me.  They had no idea what they were getting into! 

I will be spending the winter at our house in Henderson, NV as the cold and altitude of Hailey, ID would be tough for me to endure.  If you find yourself in the Las Vegas area please let me know: heidi@dohse.net.

XOXO

Heidi

I have just barely finished “Heart Surgery: The Adventure” and I am surprised at how quickly “Chest Surgery: The Sequel” has come out.

The plot of the sequel is very similar to the plot of the original adventure.  Basically, it starts with me having trouble breathing.  The twist this time is that “trouble breathing” is accompanied by “excruciating pain” on my right side.  In “Heart Surgery: The Adventure” this is the same place that my chest cavity filled with blood and then my body systems crashed. 

Anyway, both times the story begins with me making a trip to the St. Rose – Sienna Campus Emergency Room in Henderson, NV.  Both times I am admitted into the hospital and held hostage until every possible test is performed and then I am told to go back to UCSF Hospital in San Francisco.

So far “Chest Surgery: The Sequel” is turning out to be more of a mystery, where as “Heart Surgery: The Adventure” was a historical saga.  What we know at this point is that I have a pleural effusion located in my right chest cavity.  However, doctors have no idea why this has happened. At first the they thought they would find a single large pocket of fluid that could be drained and I would be good to go.  Instead, 60 seconds into the thoracentesis procedure the ultrasound technician found that we had a problem. She had found multiple pockets of tissue, blood clots, and liquid in my chest cavity.  So much for doing things the easy way… 

The only procedure to remove all of this, and allow my right lung to expand again, is to have the doctors perform…  wait for it…  Chest Surgery.  This surgery involves a 7 to 8 inch incision, from front to back, into my right chest cavity.  When they get in there the doctor will scrape out all the gunk and sew me back up.  Once this is complete I will be able to take a deep, pain free, breathe of air using my fully expanded lung.

Back to the mystery part of the story:  There are many unanswered questions in this story such as why this issue has occurred and how to locate where my internal leak is coming from.

 Personally, I have a theory about this whole thing and it makes about as much sense as anything else.  My theory goes something like this:  I have accumulated A LOT of scars on my body over the years.  I am going to map them all out using stars on a paper doll and then see if they match any constellations.  Perhaps, with this one last scar I will have the key to my astrological future, or at least the secrets for surviving 2012.  Believe me – this theory is no more bizarre and outrageous than my having a complicated pleural effusion after everything else I have been through.

So stay tuned and I will let you know what happens...

On another note: our 4 women relay team, named "Live, Laugh, Ride,"  was confirmed with a spot to participate in the 2010 LOTOJA Classic event!  This is great news and I am really excited.  I just need to get healthy so I can started riding.

I learned that it doesn’t hurt nearly as badly as I thought it would.

I learned that the body is amazing and can overcome pretty much anything.

I learned that there are a lot of wonderful people out there!

On April 29^th it will be three months post heart surgery.  Wow! Time does fly when you are having fun.  As it turns out I don’t remember much about being in the hospital or the first month after surgery.  You have to love modern medicine and pain killers.  So what if my memory is foggy, at least I didn’t hurt.

Prior to going in for this little surgery thing I had commented that I have all the classic cosmetic surgery scars, but none of the benefits.  I am happy to say that this time I did get some really nice added benefits.  When the doctors realigned my sternum, after cutting it down the middle, they really improved my golf swing.  Also, I think that when they did all the blood transfusions they used only the blood from “skinny” people.  I have dropped down to a size 6 and I feel great! 

My husband and I just returned from a vacation in Kauai where I was able to visit my “happy place” in person.  I lay down in the hammock, listened to the waves and thought about how awesome it is to be alive.  Plus, I did take the advice from a comment on my prior blog and bought a great bikini.

I have been riding my bike quite a bit.  Last weekend I did my first bike race / charity ride here in Las Vegas.  It was a short distance of only 10 miles but it felt good and I finished third overall.  The real ride is coming in September – I hope!  Three others and I have a relay team called “Live, Laugh, Ride” and we are just waiting to find out if we get a slot to race in the LOTOJA Classic in September.  It is a 206 mile single day bike race. You know you have great friends when they are willing step up like this to support your dreams.  I keep telling the girls that it will be fun! Not sure if they believe me though.

This Friday I fly back to San Francisco for one last surgery.  On Monday the doctors will go in and untie the vein and artery in my arm.  Originally they had connected them to help the healing process.  Once that is complete I can stop taking the blood thinners and then in six months I should be completely healed.

My heart surgery adventure is almost complete and I am grateful to all of you that have joined me along the way.  Thank you!

I am so glad to finally be out of the hospital!  This means that I really did make it out alive and now I have access to better food.  I know that sounds so cliché but the food really was bad.  Not that I had much of an appetite.  Originally my stay was estimated to be 5-6 days but because of my little “near death experience” set back I was there 13 days.

The first thing I did when I got to the hotel was change into walking clothes.  While I was changing I had a chance to see myself unplugged from all of my tubes and IVs for the first time.  For a minute I was kind of freaked out as I had what looked like a second belly button.  It turns out the hole was just where a chest drain tube had been. From there I took some time to look at all the new scars.  I got to thinking that the pattern they make is kind of cool.  I am going to use the scar pattern to create a personal logo.

The next thing was to go shopping. Besides wanting to get outside, I really did need to go to Walgreen’s pharmacy to pick up my 12 prescriptions.   I was so excited to be free that my Mom and I power walked the streets of San Francisco.  Not one of my better ideas. Even though it was only three blocks to the pharmacy I was gasping for breath in a big way.  Once I had caught my breath we walked very slowly back to the hotel and I re-read my discharge paperwork to see what level of activity is permissible.

The Westin St. Francis is a wonderful hotel, and like all Westin’s, the room has a Heavenly Bed. After my shopping debacle I lay down on this fluffy, comfy bed and slept for hours.  No one came to take my vitals or poke me with needles.  When I woke up I went down to the restaurant and ate a meal while sitting in a chair at a table.  After 13 days of eating all my meals laying down the whole breakfast in bed thing has lost its charm. 

Now that my body is quickly getting used to standing up and moving around, plus I had a good night sleep, I was able to go to the gym and begin my first day of training on the bike.  It was not much but it was something.  It was 10 minutes on light resistance but at least I was on the bike.  I am really amazed at how good I feel.  There are things that I need to get used to and I hate giving myself the blood thinner shots in my stomach, but all in all I am doing great.  We will know if the surgery was a success in a couple of months.

The hospital / surgery phase of this adventure was filled with far more drama than I anticipated. I truly believe that I was able to pull through the worst moments because of all the prayers and good thoughts people were sending to me.  I want to thank everyone.  It really made a huge difference in my life.

Now I am officially on to Phase Three and Recovery.

Wow – did things get off track for a little bit.  I was feeling pretty darn chipper after my 13 hour procedure, 8.5 hours of that was actual surgery time.  The first thing I remember was being in the ICU smiling that I had woken up and thinking "yeah! its over".  I may have even giggled I was so happy.  On Sunday evening I was moved to a regular room and I was walking laps by Monday.  Phase three of my surgery rehab plan was ahead of schedule! 

Then Tuesday morning came along.  I could literally feel a shift in the way I was hurting.  Now I felt like I had not only been hit by a truck, but I was drowning all at the same time. It was very strange.  Doctors were performing tests to figure out what was wrong and I was just trying to breathe.  The doctors got their answer about the same time I stopped being able to get air in my lungs and my blood count numbers had dropped. 

That is when stuff got really ugly and painful.  I was dragged from my bed to a gurney and it was explained to me that my right lung was filling with blood.  The doctors apologized but they would need to put a drain tube into my lung and access line into my Femoral Vein.  It would need to be done - NOW!  And they were not kidding.  With no time to put me under, I felt the twin stabs of the chest tube and the access vein.  This is when I thought of those ER dramas on TV where you see people writhing in pain with a helpful person chanting “breathe”.  In real life there is not a helpful person chanting “breathe” because anything other than a four letter word or “hold on – we’re going in fast” would be silly.  Also the pain is far more intense then what they portray on TV... 

As I had mentioned in a previous blog it is a good thing I already had my “happy place” picked out becuase I needed to go there fast. This setback also sent me back to the ICU and the hospital issue "gowns".   I had lost a lot of blood and it took them a while to get all of the blood infused back intome. I now have a total of 11 units that have transfused in to me. 

My current status is that I have been moved back to the regular UCSF hospital rooms.  I still have my chest and lung tubes in.  Last night my husband, my IV tower and I did an amazing 10 laps around the hospital floor.  When I woke up this morning I knew I felt a shift that everything is getting better.  All I wanted was a good cup of coffee and my computer so I could start going through my email. 

I really want to thank all of you for your prayers and positive thoughts.  I know that is what got me through this last ordeal.

Today is the day. I am headed over to the hospital right now for surgery.  Turns out I will be sleeping for a couple of days.  But as soon as I get out of ICU I will send an update on how everything turned out.

Thank you to everyone for all the prayers,postitive energy, and love you have been sending my way!

Big Hugs to all of you.  I am headed on out to my happy place now.

I am at the Las Vegas airport getting ready to fly to San Francisco for phase two of my Surgery Adventure.  Phase one has been full of surprises.  I have met the most wonderful people that I normally would not have come in contact with.  These include Pat and Barb at the blood bank. I doubt that anyone has laughed as hard or as much as we did when I was there to give blood in case I need a transfusion.  I look forward to donating blood in the future just to hang out with them.

I have to say that photographer John and his wife, makeup artist Christine, are two of my new favorite people.  Wow!  They can really make a person look great.  A professional photographer that can retouch photos is better than a spray on tan before vacation.  Now I look at all those magazine cover girls with flawless skin, looking beautiful, and know that I have pictures of me like that also. 

The list goes on and on with people that are doing things in ways that make a big difference to me.  I have always believed that our greatest experiences happen in the five feet around us.  It is when we come into contact with people or opportunities within that space that can make a positive impact. Even if it is just a smile it is a positive gesture that hopefully will be “paid forward” to someone else.  I figure it is worth a try.

I am finding the same is true for our “virtual five feet”.  The number of people that are coming into my virtual five feet because of this blog, email, and facebook is really amazing.  Receiving comments from a childhood friend that I have not heard from in years; and emails from friends around the country and world has been great.

The best part about phase two of this adventure is that I will sleep through most of it.  My heart goes out to my family and friends as they have to sit and wait for doctors to give them updates.  I wonder if I can put in a request for surgery music to be played in the operating room.  

While phases one and two are interesting… The real fun starts in phase three because, as long as I wake up, then the ball is in my court again.  Recovery is probably going to suck for the first few weeks.  But at least I have control over the progress.  With enough good drugs I may not even remember it. 

Well the plane is ready to board and I have big plans to go out and enjoy hanging out with friends at the pre-surgery party tonight!

I just got off the phone with Brent Chambers of Epic events.  This is the company that puts on the LOTOJA Classic bike race.  At 206 miles The LOTOJA Classic is the longest officially sanctioned one-day bike race in America, touring through three Rocky Mountain States, Utah, Idaho and Wyoming.   My conversation with Brent had me reminiscing about the ride.  I completed the race in just over 12 hours the year I rode it.  Crossing the finish line is a surreal moment I will always cherish.  It is an AWESOME event!   

So I have decided to up my surgery recovery goal, a 50 mile ride by July, to also include putting a relay team together to race in the LOTOJA Classic on 9/11/2010. What the heck, I figure I should just go big!

People often ask me why I do things like ride in the LOTOJA or to adventure racing camps where you don’t sleep and then repel off a cliff.  My answer to them is “because I can”.   I guess I live my life like “The Little Engine that Could” climbing up that mountain saying “I think I can, I think I can, I think I can.”  This philosophy has created a lot of really great adventures and opportunities for me.   

I have noticed though that even though “we can” sometimes “we don’t” because fear holds us back.  I have an irrational fear of heights.  When it comes to repelling down a cliff I become paralyzed with fear.  In the lead up to going over the edge I am nauseas and have to remember to breath.  But I go over anyway, because I can, usually crying all the way down.  Once back on the ground I think it is the coolest thing ever.   

The way I feel leading up to this surgery is a lot like going over the cliff edge.  Mostly I push the fear away with humor and keep a positive attitude.  But there are moments that I am stopped in my tracks and nauseas with fear.  And yes, I hate to admit it, there are tears too.  

It is during these times that I wrap myself up in all the prayers and positive thoughts people are sending my way and I hold on tight.  With all of the wonderful people out there rooting for me, I know I can make it and over this next big mountain.   

I want to thank all of you for being there when I get scared.

Today I received the itinerary for my upcoming procedures. There is a pre-surgery party at Zuni’s Café on the 26^th.  A family and friends dinner on the 27^th.  On the 28^th there is a pre-op consultation and “Left Upper Extremity Venogram” followed by hospital admission.  It really sounds like a good time. However, food and drink are not included after mid-night.

The activity I’m most concerned about is on Friday the 29th.  It reads “Surgery:  Left 1st Rib Resection, Left Subclavian Vein Bypass, and Creation of Left Upper Extremity AVF”.  I am not sure what any of that means, other than it involves sawing open my chest, will leave a mark, and take time to heal.

This brings me to my surgery preparedness list. There are the typical things you think about:

•  Pay bills
•  Schedule vacation days from work
•  Make sure life insurance is up to date
• Buy dog food

Then there are the things that make the hospital experience far more pleasant. As a veteran of multiple hospital stays, here are a few of the items on my pre-surgery to-do list:

1. Make sure I have my “Happy Place” picked out.  Choosing a mental “happy place” is like shopping for a vacation home.  It needs to be a comfortable place you can go to for relaxation and reduce stress.  I recommend having a place already selected before you arrive at the hospital.  Seems that once you arrive it doesn’t take long for someone to say “go to your happy place”, as they stick a big needle in your arm.  That is the wrong time to start searching for my happy place.
2. Select hospital outfits.  I really dislike the hospital gowns.  Though in the past I have made quite the fashion statement with a pair of scissors and a belt. Now I find that comfy “lounge wear” and “no water hair wash” are the keys to feeling better fast.  I have to say, it really is too bad that there is not a manufacture of hospital performance wear.  They could leverage the concepts used in the creation of the clothing athletes wear for adventure racing.  Adventure racers know what it is like to wear the same outfit for 3 days straight without a shower.  Their clothing is made from fabrics that are comfortable, breathe and don’t hold odor.  Blood and other stains wash right out!  Just think - a cute pajama outfit made with four-way stretch and Silver Ions infused fabric. 
3. Have Glamour shots taken: this is a new addition to my traditional pre-hospital task list.  I have decided that if you are going to drastically change the look of your body, it might be a good time to document the way you want to remember your body.  Even if the resulting images have been retouched and look nothing like you.  Looking FABULOUS is all that matters.  *Note: Completion of this task may have less to do with preparing for surgery and more to do with turning 46 years old next week

Well, I am off to the blood bank to begin stockpiling blood in case I need a transfusion.  This will be a great opportunity to visit my “happy place”.