Finally.............feeling better

yes, I finally feel better.  I had been feeling a bit run down since I returned from California early last week.  I didn't have my second wind exercising and I was sleeping like I needed to hibernate.  On Monday afternoon I had a migraine headache for the first time ever in my life.  It was quite frightening when my colleague asked me, "hey are you OK??  you aren't making sense."  I shut it down for the day took a 4 hour nap.  I NEVER take a nap.  A risk with the LVAD is stroke so when you get an acute headache that shows up so fast you mind starts to wander.  It took a couple of days after that but I finally have a good appetite back and my energy.  I have worked out five days in a row for the first time since my surgery last year which is great.  So yeah, finally.

I became friends with another patient last year when I was hospitalized named Dave.  He has his LVAD placed about two weeks after mine.  He just got his new heart last Saturday the 18th.  I saw him in the hospital on Monday and spent some time with his family.  He looked great for being only two days since his surgery.  Well I went with the family yesterday to the hospital and spent about 90 minutes with him.  He looked amazing and the change since early in the week was palpable.  He had so much energy and had good color and just looked healthy.  I don't know how to describe it other than to say if you have spent any time in a cardiac ICU the patients don't generally look great.  Dave looked awesome.  I have attached a couple of pictures of he and I.  For me it is so good to see beyond the surgery and see the other side.  A happy and relieved family, his great kids, and somebody who looked like his life was starting again.  It validates for me all the research I have done into what this next step represents and what I can look forward to.  

Here are a couple of pictures

Please consider helping

My employer is pushing us HARD to make donations and volunteer time to worthy causes. To me, and I hope many of you all, nothing is more important that curing heart disease. So my charities/organizations I am supporting are the American Heart Association, UNOS, and Caringbridge. Please check out my page: Pete Q Dell volunteering and donation page

I am asking for you to check the page out and offer any thoughts of advice or encouragement you may have. If you can, a donation would be great as well. It shocks me that so little noise is made for heart awareness in the month of February:-(

OMG, the LVAD shut off

Heidi and I woke up yesterday to a frightening discovery.  The display unit for my LVAD had shut off. My first thought was OMG, my LVAD stopped AND I slept through the alarm.  I immediately did a self-test on my device and looked at the power unit to make sure it was still on.  We unplugged the display chord and plugged it back in and it came back on which was a relief.  It reminds me the first time I had a battery alarm I started shaking and couldn't remember what to do.  It sounds like no big deal as I write this but I can assure you yesterday morning it was no laughing matter.  Have to take my display unit into the hospital this morning for them to swap out.

Organ Donation Article

Read this last night, courtesy of my Google Search.  Pretty interesting.  Article discusses how other countries, in particular Israel, deal with the religious and ethical dilemmas around organ donation.

Who deserves a heart transplant

Two articles in one day:-)

Wow.  Another very exciting article just came in.  Check it out:-)

Wireless LVAD????

Happy National Organ Donor Day

I tricked you all:-)  I just saw on another Hearty Blog that highlighted that not only is today Valentines Day, it is also National Organ Donor Day.  The statistics are staggering:

• 113,000 people waiting for an organ
• Each day an average of 79 people receive the gift of Organ Donation
• 18 people die each day waiting for a donation
• 1 Donor can save up to 8 lives

I received an email from my sister this morning that a co-worker of hers received the call from her father, needing a heart, at 2:40 AM EST that a heart had come available and that he would go into surgery at 8:00 AM EST.  No word yet on his status!

National Organ Donation Link

Thoratec Visit

I am on my plane returning from San Fransisco.  I arrived on Monday night and left today, Friday the 10th.  Spent 3 days in San Jose, one day in Pleasanton and 1 day in Fairfield and my uncle's house.  The highlight of the trip was definitely time with my family.  However I want to share about my time in Pleasanton.  I went to Thoratec's headquarters.  Thoratec makes my Heartmate 2 LVAD.  I had the VIP welcome, lunch with about 20 people and a factory tour.  What an amazing experience.  After the shock of having 20 people watch your every move as you eat, say your hellos, etc. we had lunch and got down to business.  I think there was representation from marketing, sales, advertising, manufacturing, clinical development, R&D and maybe patient outreach.  If I missed someone I am sorry.  I got to share my story and get asked questions about my experience.  Then I was able to walk through the factory and actually touch a real pump, see it assembled and see the amazing production process.  For those that have this device, take my word for it, this production is absolutely state of the art.  I asked a lot of questions from a patient, care-giver, recipient, and a business perspective.  The thing that struck me was the palpable admiration of the employees in seeing a patient, the caring way they asked their questions, asked about my kids and family, how I am feeling, my input on "living" with the device.  Just awesome.

I arrived at 12 PM and left at 4 PM and drove north.  Then I had cheated and had a glass of great wine and a big steak.  Doesn't get much better than that!

The reality of Heart Disease

I am in San Jose, CA this week for business with my customer.  Last night when I returned after a very long day, on my feet briefing the entire day, I changed to go grab some dinner.  I immediately noticed swelling, or edema, in my legs.  For the uninitiated, edema is fluid retention that pools in your lower extremities and in bad cases in your abdomen.  How do you know you have it?  Well the sock line that a normal person gets is replaced with a muffin top so to speak of fluid.  When you press your finger into the soft area it remains indented and feels like firm sponge cake.  For me that is a in your face reminder that I have end-stage heart disease.  It is a symptom of poor profusion or circulation.  Your kidneys are not fed sufficient blood flow/volume to remove or filter the waste product, electrolytes, salt and fluid from your blood so it backs up.  So, I swallowed my pride and told Heidi and she told me to call the VAD coordinator.  I didn't have any Lasix (Fuorosemide), the water pill, so I had to have a prescription called in.  When I made the call I was afraid I was going to be sent to the hospital.  In talking through the situation with the coordinator I realized that because I was on my feet all day, wearing dress shoes that were tight, in a conference room that was poorly temperature controlled (it was either 76 or 65 all day) that I probably retained some fluid.  That and having eaten out 4 meals in a row probably laden with salt.  Fortunately, the Lasix worked its magic and after peeing 6 times in two hours I was back to chicken legs.  I took another one this morning, worked out for an hour, and ate two banana's to watch my potassium.

The other day I wrote about the bad days make you realize the good days and value them more.  Last night was a BIG wake up call, a reminder that despite the fact that I look very healthy and am otherwise doing all the right things, the reality is that my LVAD is life support, and while waiting for a heart transplant, in its simplest form, I am dieing.  Some may not see it that way, or think that it is morbid.  It is hard to think, hard to talk about, and hard to write it hear because I know that people who love me and care about me will read it.  But, if my pump fails I am in the weeds.

The irony of all of this, lol, is that I am heading to Pleasanton, CA to Thoratec, the manufacturer of my Heartmate 2 LVAD, today for lunch and a tour.  My timing is impeccable:-)

Living the dream, It's a nightmare, but at least I am in it.

Since I had my LVAD surgery last April nearly every day has been great.  I can think of about 3 days total that have been hard.  Two of those were in the first month after surgery.  I think the first one was about 3 days after surgery and I was still in shock, just couldn't talk and share my thoughts.  The next day that was hard was coming home from the hospital.  It sounds crazy but just the fear of not having someone to care for your critical medical needs was frightening at that time.  Last night was another of those days.  Nobody did anything and I didn't plan on it, but it was a long night.  Living with the Thoratec Heartmate II LVAD is so easy, most of the time.  I find it easy to ignore little things like the rubber cords ripping my arm hairs out, or the cord getting snagged on things.  But sometimes it is just too much.  Last night the cord wrapped around my leg 3 different times while sleeping at each time I rolled over the cord ripped hair out of my thigh or shins.  Then I got up to use the rest room and my pillow fell off the bed and onto the cord.  Somehow it stuck to the cord and ended up pulling the PBU off the nightstand and crashing onto the floor in the middle of the night.  I got up to go to the gym at 530 and the pillow that I had thrown off the cord earlier in the night was blocking the door out of the bedroom so when I tried to leave in the dark the door wouldn't open and I crashed into it.  Suffice it to say I was in a raw mood at the gym.

I will forget about this by tomorrow, but I am writing about it because it is too easy to forget about a day like today in the bigger picture of how I feel.  For that reason it is important to capture it and share it because the message is that yes, a great many of your days will be good, but days like today suck!!!  It is a raw and real reminder of what I am going through, and it is hard.  I don't feel sorry for myself, I am just pissed.  People will say my attitude is something that I can control, I need to take responsibility for that.  HOWEVER, in every support group meeting I have been to for both the LVAD and transplant, the therapists and patients are quick to point out that it is ok to FEEL what you feel and when you feel it.  It reminds you to be thankful for the good days.  It reminds of being in the military when my 1SG would say during PT in the morning that,"Pain is good, it means you are alive."  

I have to thank Meech for my post title today. I went to cardiac rehab with him and while he was large and loud, he had something funny to say every day.  Great guy and I wonder where he is and how he is every day!