Popular Posts

Popular Posts

Thursday, January 31, 2013

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/

Saturday, January 26, 2013

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.










Thursday, January 10, 2013

My life at 9200 rpm's: LVAD driveline infection situation report

For the last five weeks, I have been fighting a driveline site infection.  From reviews of the infected area by the LVAD support team at the University of Minnesota, the situation is being managed well with appropriate medication and site care, specifically dressing the wound.

All LVADs are susceptible to driveline infections. I'm told they are the most common complication after implant.  There is no definitive explanation of why after 32 months of not having an infection, one cropped up.  Fortunately, the infection seems to have been localized at the driveline site in my abdomen where the electric cable connecting the HeartMate II pump with the computerized controller I carry on my belt.  

The driveline site is maintained using sterile wound cleaning and dressing procedures. An unexpected tug on the driveline can cause a break in the driveline site seal and let infection start.  Mine was localized. The danger is that the infection can be carried along the driveline to the pump itself and to the pocket under the heart where the LVAD is placed.  

One possible explanation discussed with cardiologists and associated LVAD team members was the immune system suppressing drugs and substantial amount of steroids that were given to me when I was awaiting a heart transplant.  

I literally was at the threshold of the operating room, prepped and ready to go, when the transplant operation was canceled. I was told the heart was not the match the doctors wanted for me.  Meanwhile, those powerful drugs immune suppressing and anti-rejection drugs I was given pre-op could have caused a dip in my immune system enough to create the right circumstances for a driveline infection to get started. 

None of that really matters in the final analysis because I'm doing so much better and am on the mend.  Infections happen:  deal with them.  It was also a good sign that the doctors said the infection was localized. None of my medical team ordered a CAT scan of the area, and from this I conclude that the infection is at the site only.  That's good for me.

LVADs undergo a right heart catheterization each year. I was three months overdo and so the procedure was done during my U of MN visit.  It is done in an operating room. After prep with local anesthetic, an incision is made in my jugular vein and a catheter is inserted through the vein and into my heart.  

The catheter is a spaghetti-thin tube that   allows the doctor to measure pressures in the heart and lungs. A contrast agent illuminates x-rays of the area to aid in the assessment. I got a good report and a stiff neck from the 50 minute procedure because I had to look sharply to my left and hold the pose for most of the time.  

Pressures were normal and I was told that my heart is squeezing harder than it did the last time it was checked.  But that doesn't mean I get to have the pump removed.  It's with me until I get a new heart.

Later in the day, silver nitrate was applied to part of the infection site to cauterize the area.  The chemical burns the newly forming skin, creating scar tissue, which is tougher than the "friable" newly grown skin. Friable means fragile and crumbly. Hence, easy to disturb its surface.

A day later I could tell the difference because the infection site was less tender to the touch.  Today, I'm back to wearing a 5.1.1 Tactical holster shirt to carry my batteries.  The shirt is far better than the shoulder holsters I wore for the past few weeks. Also the shirt has spandex in it, which supports my bandages.  Usually, I use an elastic binder to keep the bandages in place.  

The binder also permits me to stabilize my driveline using velcro tabs to hold it in place.  However, I now have a different anchoring system that uses  an adhesive strip and a plastic clip, like a reusable zip tie, to secure the driveline.  The anchor system was made for securing a Foley catheter in place but it serves well for this adaptation. This is the first time since April 2, 2010 that I haven't used a binder.  The sense of freedom is great.

In all, this 90 day LVAD checkup was positive reinforcement for me.  The journey continues.


Wednesday, January 2, 2013

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.