My Life at 9200 rpm's: What they carry

Not to put too fine a point on it, but my life was essentially over three years ago.  I was 65 and had end stage congestive heart failure.  

That means things were not going to get better but could only get worse. Then the savvy doctors working with me had a great notion: a left ventricular assist device might help.  And it did.  With it came new skills and responsibilities.

When I was implanted with a HeartMate II April 2, 2010, I was taught how to care for and carry my equipment.  And reminded never to leave home without my backup equipment. It could save your life, I was told.  It reminded me of boot camp mantra never be separated from your rifle.  You can't do your job without your gear. Some of the gear, the guts, is inside you, namely the LVAD.

But the other equipment is mostly visible: a battery under each arm with a wire protruding from one end, a fanny pack worn at belt level containing the computer that runs the show, and the battery wires that run to the computer.  Finally, the signature black equipment bag that holds spare batteries and such.

The gear isn't very heavy but it is a tad cumbersome because it's with you all the time.

The controller, the brains of the LVAD, weighs a couple of pounds. In addition, my batteries, that clip into battery cases, which in turn are attached by cables to the controller, weigh a couple of pounds each. 

The controller is your constant companion when you have an LVAD.  I don't remove the controller from my waist to sleep, but loosen the belt.  Instead of batteries, the sleep regimen involves an 18 foot long tether with connections to a power module plugged into an outlet. The tether fortunately reaches the bathroom.

The HeartMate II system depends on redundancy. The controller actually contains its own backup computer. But each LVAD owner carries a backup controller, two batteries with their clip connections, and miscellaneous spare medicine. Everything fits into a "go bag," a black camera-type bag 8 by 7 by 8 inches.  

Thoratec, maker of the controller and all HeartMate II equipment, has just received federal approval to begin issuing a "pocket controller," which is one third the size of mine and weighs only a few ounces. Newly implanted LVADs will have the "pocket controller."  Besides the reduced size and consequent weight reduction there are other positives about the "pocket controller." 

For example, all three leads on the pocket controller attach on one side, making it more carry friendly.  It can be slipped into a pants pocket with ease.

The "pocket controller" also has a display screen, which gives instructions on what to do in response to an audible alarm.

But the best part is that the p-c has a battery that will power the LVAD for up to 30 minutes, in case power from batteries or the plug in power module is lost.

By contrast, the current controller is football shaped, about nine inches long, four inches wide and about two inches thick. It is not easy to slip it into a pocket but it does have a belt clip on the back.  I find that clip useless. The leads on the current controller make it cumbersome to carry.  One cable connects to each end of the  current controller.  The batteries and connections power the controller and in turn the LVAD.

The p-c is a step in the direction of a fully implantable pump with power source inside the body.  But that's another story.

The point of this post is to alert other LVADs and readers to the availability of something that would make an LVAD's life a little more comfortable.

These devices are expensive and each current LVAD needs two p-c's to be prepared.  No word yet from the University of Minnesota LVAD team about when or whether current LVAD owners can expect to swap current controllers for pocket controllers.

Hope is a good thing.  But the reality is that my LVAD, serial number 8358, and its accessories are working as designed.  At least I'm here to talk about it and that makes all the difference.



  

My Life at 9200 rpm's: Hope for the weary heart

In keeping with my commitment to spread the word on the value of mechanical circulatory support devices, The University of Virginia Medical Center in the linked article below offers a snapshot of where matters stand. Left ventricular assist devices are becoming more abundant for congestive heart failure patients.  Simply put, LVADs work.

I've had my Thoratec HeartMate II LVAD for three years and a few days.  The company's website carries a note that some 13,000 HM II's have been implanted worldwide.  

Last year at this time the figure was 10,000.  Progress comes in increments, but 3,000 new pumps worldwide in a year is pretty significant.  Other manufacturers, of course, are not represented in the 13,000 figure.  The more pumps and pump owners the merrier, from my perspective.

Here is the link to the UVA cardiologist's post   http://www.dailyprogress.com/lifestyles/vital-signs-learn-the-facts-about-heart-failure-and-the/article_2001cbf6-98a4-11e2-8164-0019bb30f31a.html

I have continued on my LVAD journey these last few days as an inpatient at the University of Minnesota Medical Center.  I had some symptoms of a blood clot in my pump and a kidney infection to boot.  The infection was resolved with antibiotics.  The clot is another matter.

Since the pump is not susceptible to internal inspection while installed, the docs use a series of tests to confirm their clot theory. Meanwhile, the patient gets a continuing dose of heparin by IV, which is a strong anti-coagulant.  Heparin keeps the blood flowing, avoiding a stroke.

One option for a clot in the pump is to have another LVAD implanted.  Another option is a new heart.  Fortunately for me, another LVAD was ruled out "at this time."  A new heart is the eventual goal, but none is on the horizon.  

I've been on the UMMC heart transplant waiting list since Hallowe'en, 2011.  In that time, I've had two 'dry runs'.  The good news for me is that my HM II has allowed me to have a life awaiting a new heart.  For that I am grateful every day.

My Life at 9200 rpm's: My third LVAD-aversary and counting

April 2 marked my third LVAD birthday.  Thanks to the skillful folks at Mayo Clinic I got my life back 4-2-2010. There have been some bumps the in journey but three years downrange from implant is a victory in my book.

Since the implant, I transferred my care to the University of Minnesota, where I wait as a candidate on the heart transplant list.

In my internet wandering, I often visit Thoratec.com.  There and elsewhere I read what I can about congestive heart failure, not out of a sense of the macabre but to glean insight into this pernicious disease.

Thoratec's website linked to an account by The University of Michigan of a story about a woman who has had her LVAD since August, 2005.  Like mine, she has a HeartMate II.  She is thriving. 

Here is the link:  http://www.uofmhealth.org/news/archive/201303/meet-joeann-bivins-heart-failure-choir-singing-record-setter

My life at 9200 rpm's: Congestive Heart failure LVAD therapies are available around the globe

As I was looking around the LVAD blog arena, I found a presentation from a Singapore hospital's account of congestive heart failure.  The narrative was on a fellow bloggers site but I felt no compunction in appropriating it for a wider readership.  

After all, the bigger the audience, the more the word will spread. Here's the link:  http://mountelizabeth.com.sg/en/Facilities-Services/Specialties-and-Specialised-Services/Heart-Failure-and-LVAD

I have been told that the folks at HeartWare cover more of the world outside the United States.  Their LVAD is smaller than my HeartMate II.  The associated gear is more compact and lighter to carry.

At any rate, the link above is for a hospital in Singapore, the former British possession at the southern tip of the Malay Peninsula. The point is that those who may benefit from mechanical circulatory support therapy can get it worldwide.

Read and spread the word.  There is help for those suffering CHF.  Drugs can help until the disease progresses too far. The recourse for those in end stage heart failure is either an LVAD or a heart transplant.  

But since the number of donor hearts is limited, the best hope is an LVAD.  Not everyone is an acceptable candidate for the device.  Pass the word that LVADs work.  I am symptom free and living life so I endorse the therapy unreservedly.

My Life at 9200 rpm's: Helpful LVAD communities on the web

The longer I have my LVAD, the more worthwhile I find that sharing experience of life with a mechanical circulatory support device/LVAD can help others.  

Those thinking about getting an LVAD, for those who, for lack of time to consider the option because death is around the corner, and wakeup to find they have an LVAD, and for those somewhere in-between, here are some resources that you may find helpful.  

I got my LVAD almost three years ago and had little choice in the matter.  If I wanted to remain alive, a HeartMate II, was the only option.

Facebook has several groups I belong to:

LVAD Warriors,

LVAD Inc. and Beyond, and

LVAD Friends.

The posts are current, relevant, encouraging, and helpful. Some of the posts will make you glad. Others share brutal, sad reality.  The point is, these are places to share: triumphs, setbacks, daily living-- "the full catastrophe" as Anthony Quinn, acting in the 1964 movie  Zorba the Greek said.  

Zorba seemed to mean experiencing all of life not thinking a catastrophe was certain disaster. Having an LVAD is not the end, the unraveling, but another phase of living.  Celebrate. 

Any person with an LVAD, no matter what the brand, and all those with an interest can join.  You need approval from the moderator. Search for them on Facebook and contact the moderator.

Google search for left ventricular assist devices and take your pick.

I visit MyLVAD.com often.  The forum section has plenty of practical information based on experience that only comes from having the LVAD experience. Take what you like and leave the rest. 

Another spot I visit is WebMD.com.  Thoratec and HeartWare each have websites that have useful information but no sharing in the Facebook sense.

The point is to have a place to share.  By sharing, I find comfort and hope.  I am not alone.

My Life at 9200 rpm's: An LVAD Warrior on the front lines

When I waved in the rear view mirror at St. Marys Hospital of Mayo Clinic in May, 2010, I knew that my life link to medical information for survival would come from my LVAD Coordinator.    

At the time, Mayo did not assign a particular coordinator to a particular patient. It was a potluck situation:  you got the coordinator on duty.  When I transferred my care to the University of Minnesota Hospital, I was assigned a specific coordinator.  I like the U of M system because it builds a relationship, a bond, based on trust.  

I don't dislike the Mayo method which treats coordinators and patients as interchangeable.  But at the U of M, I don't feel like a number.

Coordinators are universally well trained, experienced registered nurses. Their level of dedication is beyond passionate. They work closely with LVAD teams of surgeons, cardiologists, other health care professionals and are the conduit through which LVAD patients receive vital information and referrals to specialists.  They are like a football quarterback, who takes the whole picture into account before calling a play and carrying it out.

My friend and fellow LVAD recipient, Kristi Mardis, has obtained the ideal job: an assistant LVAD coordinator for her LVAD implantation center and hospital, Baptist Health in Little Rock, Arkansas.  The hospital is fortunate to have her.

She has the hands on knowledge and experience with her HeartMate II, LVAD, that is unavailable from any other source.

A recent article about her decade long heart failure journey is available at http://www.imperialvalleynews.com/index.php/news/health/3048-lifesaving-technology-provides-promise-for-heart-failure-patients.html

My life at 9200 rpms: LVADs are hope, plain and simple.

I read a news story and saw the account of a San Diego area man, a former weightlifting champ, who wouldn't be here without an LVAD.  Like me, he suffered end stage heart failure.  After multiple stents and a major heart attack, he was out of options.

Donated hearts are at a premium.  The wait for a donor is long and there are no promises that a suitable heart will be found.  Enter the HeartMateII and other left ventricular assist devices. Without these medical mechanical circulation support devices, LVADs would succumb to end stage heart disease.

Paul Conway, the LVAD from south of San Diego, got his pump and has been waiting for a heart since 2010.  It has changed his life and outlook.  He and his wife and three daughters have enjoyed three additional years together and he is really pleased with having his life back.

Here is the link to his story:

http://www.kpbs.org/news/2013/jan/29/implantable-heart-pumps-are-keeping-beat/

My life at 9200 rpm's: Yippee Ki Yay... adios pus factor

Yippee Ki Yay, driveline infection.

I write with apologies to Johnny Mercer, fabled songwriter, and John McClane, fabled Bruce Willis good guy, who have used the cowboy phrase "Yippee Ki Yay."  

In Mercer's case, the phrase was followed by get along little doggies, it's your misfortune and none of my own.  In McClane's case, he was usually summoning the collective chutzpah of cowboy heroes like Roy Rogers and Matt Dillon, as they dispatched the villains.

This post bids farewell and good riddance to a pesky driveline site infection that is all but healed.  LVADs are susceptible to such scourges along with strokes, internal bleeding, clots in the pump itself, mechanical failures, and assorted other effects that are not of concern here.

I feel a bit like Snoopy as he does his supper dance around his dog dish. Some tap dance, ballet, or trapeze move seems appropriate, but that's problematic for my age group and fitness level. 

Anyway, it is something to note with cheeriness. I would use a profane epithet to bid the infection adieu, but bloggers have their sensibilities. At least I do in print.

To those who do not have an LVAD, you might ask:  what's the big deal?  You get an infection, you take antibiotics.  It's not rocket science. 

In the interests of understanding, I won't go there. To those who have an LVAD or know or care for one who has a mechanical circulatory support device, no explanation of a driveline infection fight is necessary.

If you look at a diagram of how the HeartMate II LVAD is placed in the body, you will see that the pump is attached to the heart and aorta. A line extends across the abdomen below the diaphragm from the pump itself to a site a few inches northwest of my naval.

The line, the "driveline," is a set of electrical wires encased in a bio-friendly, flexible sheath.  It exits the body in what is called the "driveline site."  From the driveline site, the driveline is attached to a controller unit, a 4x9x3 inch computerized brain center for the pump.  The controller is attached to the driveline via 18 inches of flexible plastic coated wire (multiple strand) and a secure connector that snaps and locks into place. Additionally, the controller is powered by two 14 volt LI batteries.  

The whole rig works as a unit, controlling the pump's operation, including its continuous flow at or near 9200 rpm's; hence the working moniker for this blog.  

The driveline site is the weakest point in the system because it is susceptible to damage and the cumulative effects of tugging, moving, shifting of the body during regular daily activities: tying shoes, reaching to an upper shelf, twisting, turning.  The worst is snagging the driveline on some immoveable object.  The object wins; the driveline site suffers.  

Most LVADs use some form of anchoring system to keep the driveline from being tugged or yanked.  The U of MN LVAD team adapted a flexible soft plastic anchoring system that was designed to hold a Foley catheter tube in place.  

Others use a stretchy elastic binder with Velcro tabs.  I used the binder system until the infection made it uncomfortable to have any pressure on the wound site.  Now I use and prefer the Foley catheter anchor.  It has the benefit of being secure and it adds no pressure to the driveline sited.

About December 5, 2012, my existence as an infection free LVAD ended.  I am fortunate that the infection stayed on the surface because infections can easily migrate along the driveline inside the body and lodge in or around the LVAD itself.  Surgeons create a pouch below the patient's heart to keep the HeartMate II in place.  The pouch can become infected.

If the infection progresses to that point, hospitalization follows.  One option, an expensive one in terms of equipment, surgical talent, and the toll on the LVAD recipient, is to replace the pump and driveline.  This is chest cracking, open heart surgery.  Not a walk in the park.

We LVADs are on the medical frontier, pioneers in many ways. Don't misunderstand me though because the life saving technology has only been around for a few years. Without it, end stage heart failure would have been the end for me in a matter of days or weeks.

When my pump was installed in April of 2010, the Mayo LVAD team said it was my only option. So on April 2, 2010, I became a pioneer.  Our online group calls itself LVAD Warriors.  We are all warriors.

The docs can guess about survival without the pump. But one thing is certain: our end stage (death is the next stage) heart failure would not react well to not having mechanical circulatory support.  In fact, I've been told that I would not last long at all if the pump failed. Is it minutes, or hours?  I don't know. That means reduced blood flow to all bodily systems.

I'm glad I don't have to go there. Semper Paratus.

My Life at 9200 rpm's: 33 months and counting, another milestone on an LVAD

My life at 9200 rpm's began April 2, 2010.  9200 rpm's is my LVAD pump speed, which typically varies downward by 20 or so rpm's before returning to the signature speed.  

Every LVAD is different and can be programed to run at a different speed. How Mayo surgeons decided on 9200 was never fully explained. That speed works for me.

At any rate, I've had a monthly heartaversary--number 33--as of today.

No complaints.  The HeartMate II is functioning as designed and quite well actually.  

I have been battling a driveline infection since early December.  The site where the driveline enters/exits my abdomen has been an open wound for most of the last month. 

Driveline site infections are potentially life threatening for LVADs.  In essence, the path along the driveline is a direct route to the heart and the pump itself.  Surgeons can fix some of the problems.  Replacing the LVAD at $75,000 per pump, a long surgery and recovery, is another option.  

The figure is for the hardware and does not include installation and aftercare.  Another, permanent, option is a heart transplant, but no one can count on that happening because the matching process for donor-donee accounts for fewer than 2,400 transplants a year.  

There are many thousands more in need of heart transplants.  I am one of the fortunate few who have an LVAD keeping me alive.  In that sense, LVADs have a breather--some time to wait for a heart--while those without LVADs are in greater immediate need for a scarce supply of suitable hearts.

A friend and fellow LVAD shows the HeartMate II on his blog, From The Bottom of My LVAD.  He described it as looking like door hardware, I prefer calling it toilet tank hardware.  Pretty expensive hardware, whatever the name.

The site has been tender and at times uncomfortable and somewhat scratchy. I changed the method for carrying my two batteries from a 5.1.1 Tactical holster shirt made of stretchy material that caused discomfort to a pair of Thoratec Go-Gear shoulder holsters.  Those cut down the irritation.  Oral antibiotics (two kinds) are doing what they should do.  

Next week I'll return to the University of Minnesota Clinic for a checkup.  That will include an assessment of the driveline site by a surgeon, and an infectious disease specialist's review of my situation and the medications I've taken.  I feel matters are in good hands or else I'd be hospitalized for the administration of IV antibiotics. 

Marking the 33rd month heartaversary is a significant milestone for me.  Some LVADs have and are having more months fly by but there are many more whose heart conditions could not be helped with an LVAD.   

I'll take a heartaversary over the alternative anytime. 

My Life at 9200 rpm's: the dreaded driveline infection

LVAD #8358, my HeartMate II, is performing as designed, keeping me going, and giving me the opportunity to be on the waiting list for a heart transplant at the University of Minnesota.  

For the last 32 months with an LVAD I escaped a driveline infection, but I'm battling one now. Who knows what happened?  Even with a heightened awareness of the potential for infection, bacteria can cause problems. The driveline exits the abdomen of LVADs and it is treated as a wound site, with sterile dressing changes at regular intervals.

I have read and have been told that a site infection is quite common in LVAD implants because the wound site is tender and susceptible to tears.  Essentially the driveline is unsecured except for external Velcro tabs that hold it in place on an elastic binder.  The binder is used to hold the wound dressing in place and as a place to attach Velcro tabs to immobilize the driveline after it exits my abdomen. Immobilization is a relative term because the driveline can still be moved or tugged.


At any rate, the seal at the wound site is fragile and can be broken with the slightest tug on the driveline.  Driveline tugs sometimes occur.  I have been fortunate that no significant tugs on the line have occurred. 

Although the site is maintained as sterile, a break in the seal of the skin at the wound site is a fact of life for an LVAD. The break in the seal, even a slight one, can lead to an infection.

 As you may know from earlier posts, the driveline is another name for the percutaneous lead that carries power to the LVAD.           Percutaneous means through the skin.  Thoratec, maker of the HeartMate II LVAD, is developing a device that will be fully implantable with no external driveline.  It follows that with no wound site there would be no infection issue.

A Thoratec engineer talking about research and development said that a fully implantable LVAD with power system is some years away, five at a minimum.  The batteries that I carry will be miniaturized, implanted with the LVAD pump unit, and will be recharged using an external system.  The combination of miniaturization and external charging, will allow an LVAD to be fully immersible.  

Being waterproof would be a great improvement over the system I use, which must be protected from rain, bathing, showering, swimming, wading, boating, fishing and the host of other wet activities.

But that is in the future.  For now, LVADs' lives are maintained with the electrical system as it exists.  The potential for tugs and movement of the driveline is always present.  Either of those driveline movements could create the conditions that cause an infection. 

A friend's driveline site became so infected that he needed inter venous antibiotics and was hospitalized. The break in the seal of his drive line site was an unforeseen consequence of taking a shower.  His water resistant shower bag, in which LVADs secure their electronic system controller and two batteries, fell off its hook and yanked on his driveline. He had used the shower bag and hook for years with no negative consequences.

Now, he must take oral antibiotics until he receives a heart transplant or until his LVAD is replaced.  The problem is that just because the infection is controlled at the driveline exit site, that doesn't mean that the infection is resolved.  

The infection can migrate along the driveline to the heart. It is possible for the infection could "seed" the pump itself. Since the pump has no blood circulation of its own, the infection could last on the pump even if the driveline site is clear of infection.  That is a dangerous situation, potentially fatal.  Hopefully, long term antibiotics can keep the infection at bay.  No guarantees.

In LVAD living as in life for everyone, there are no guarantees, there are no assurances, there are no promises.  I am fortunate to be among the few of hundreds of thousands of congestive heart failure sufferers with an LVAD.  Not many can say they have another chance at life.  

My Life at 9200 rpm's: The future at 60 minutes per hour

Doing Navy duty in London some years ago, I grabbed a colleague by the collar as he stepped off the curb of a busy street without looking to the right.  As a "colonist" from across the pond, we don't drive on the left.  For us it is the wrong side of the road 

My friend, I'm sure was imbued with the warning to look both ways, but in London the memory failed him. He looked left and began to plunge into oncoming traffic from the right. He narrowly avoided having a double decker bus ruin his evening.  

The point is that neither of us knew or could count on surviving the rest of our assignment in a foreign land.  All we had were dinner plans at a rushed pace before returning to our North Audley Street hq, across from the U.S. Embassy at Grosvenor Square.

We were working port and starboard watches, 12 hours on, 12 hours off.  The change came on the 7's:  0700 and 1900 daily for three days and then we would switch to the other's schedule.  This went on for nearly a month. But all of that could have changed in a flash, a matter of seconds. 

There's always something to learn about "driving" an LVAD so to say. Be prepared for the unexpected.  That doesn't mean that I'll have the answer, but being alert helps.

Clearly, depending on an LVAD to survive, sharpens the focus on the minutes in an hour.  It hasn't become a distraction or an obsession by any means.  

But planning has to be practical and realistic.  When, leaving my house, I carry a pack with spare batteries and a spare system controller. Yesterday, the small battery in my LVAD system controller began to sound an alarm, one quick beep, twice in an hour. What's up with that?

This had not happened before.  The beep was so quick that it was difficult to capture visually.  The second time, I caught a glimpse of the yellow light as it was going dim. 

I called the U of Minnesota to talk to an LVAD coordinator, and, after a brief conversation, we got to the bottom of the issue. The problem was solved by changing the battery module.  I had two spares on hand and, in a pinch, I could take the one in my spare system controller.

But when the initial signal sounded and showed, I had no fixed idea about the outcome.  Did I have 60 minutes, 60 hours, 60 days?

Accepting that I and my equipment are a working experiment, you have to be prepared for the unexpected.  This is not an exact science.  There is some art involved. As the saying goes, you can plan the plan, but not the outcome.  

Semper Paratus (always ready).