Eight months and counting: not at full throttle yet, noticing improvement

I'm not Polyannaish, but all things considered, I'm doing more and feeling better each day.  It is hard to accept that I'm eight months down range from transplant. But the calendar says so.  The good saga continues.

Dwelling on yesterday's problems, is a poor use of time, not to mention emotionally draining.  As Will Rogers once quipped,  "Don't let yesterday use up too much of today." That sums up an attitude that works.  Makes sense, but takes practice.

It's about minus 20 F. here in Detroit Lakes, Minnesota, as I survey the frozen lake tableau out the lakeside windows. It's a weekday, so the snow machines are quiet, the only evidence of them are the tracks. Being here is a significant plus.  There is no hustle and bustle.  I would not be here to experience peaceful nature in winter if not for the HeartMate II and my good fortune in receiving a transplant.

The only critters moving in this weather are the occasional rabbit, a murder of crows, and a few hawks, mostly red tailed hawks.  Whether the groundhog saw his shadow last week, is immaterial at this latitude.  There will be snow until late April at least.

I return to the U of MN next week for more tests. Kidneys are not filtering as well but no need for dialysis yet. 

Immuno-suppressive meds are still in the adjustment mode. Steroid induced diabetes is gradually moving toward the normal range. Overall, no complaints.  I continue to have swelling in the lower legs and feet.  Thigh high compression hose help. And the 10 minutes I spend wrangling them on is a little inconvenient but no bigee.

If you are going through hell, keep going. --Winston Churchill

The cardio team at UMMC concluded that I have no infection causing gastric issues so the culprit is likely the anti-rejection meds. But I only lasted one day out of the hospital before returning for "close observation," electrolyte level check, and general blood panels to check organ functions.  But the anti-rejection meds need constant monitoring and adjusting.  The other issue under scrutiny is a nagging and persistent cough.

One of my fellow heart transplant friends told me it took eight months for him to feel relatively normal.  He was plagued by all of my complaints and then some.

Those medications are at the core of keeping my new heart but they often wreak havoc on the gut.  I suspect it is like riding a camel with attendant ups and downs and all arounds.

At any rate, I lasted a day out of the hospital and then returned for observation because the gastric issues seem to be getting more severe.  It only feels like going through hell.  The docs say it will take time to resolve and to hang in there.

Small price to pay for a new heart, right?  I am adamant that I will keep going. I'm not at the end of my rope but I've secured it to my wrist, and am holding on, so I won't fall if I do reach the end of my rope.

The cardio team and consultants have been trying to learn what my lung ailment might be.  Some form of pneumonia is likely and it could have been caused by inhaling fungus spores.  With a suppressed immune system, many things are possible.

On the organ donor front, did you know that up to 60 persons can be helped by an organ donation from one donor?

Age is no issue for a prospective donor, but a donor must be registered.  The oldest donor on record was 92.  Even, I can be a donor, new heart and all.

Have the conversation with your family now.  Don't wait. Your selfless gift will change lives. 

The First Year After Transplant: Working Out the Bugs

The Cardio team at the University of Minnesota doesn't take nights or weekends off.  That is good for us heart transplant patients.  The team has handled all manner of complex problems, which are, of course, individually based.  One size does not fit all.

With just three months since transplant, I have had some rejection of the new heart, and spent last week in the hospital addressing it.  Once that hurdle was overcome,  it was back to Fargo for a few days, and on to the next hurdle.

This week it was dehydration based on unremitting diarrhea.  The question is whether the condition is based on an infection or is in response to anti-rejection medications.  Those meds suppress my immune system and my white blood count, which can allow infections to develop. Without a suppressed immune system, my new heart would be toast.

The infection angle is being explored.  The drug response will be addressed after the infection angle is resolved.

The Cardio team has managed these and other conditions successfully.  Management of the new heart transplant patient is as much a critical phase in the process as the transplantation of  the new organ. 

For me and my family this is all uncharted territory.  Guidance from the physicians helps with perspective. They don't have all the answers but finding answers is what they are all about. 

Meanwhile, anxiety can and does run high because there are no definite answers now.

I know I am not the only one who has faced these issues.  While the issues are a concern, they are being addressed and I have confidence they will be overcome.  It just takes time and patience. 

Easier said than done, particularly for those in the throes of what seems like chaos.  But I'm grateful for what I have.  Few get a second chance at life. Organ donors make all the difference.

Remember, you can become an organ donor with just a mouse click.  Go to www.donatelife.org.

There is nothing more exhilarating than to be shot at without result.-- Winston Churchill

Twelve weeks downrange from the transplant operation, June 8, 2013.  Despite some setbacks, things are progressing well. The HeartMate II, left ventricular assist device, was my 24/7 life support for 38 months and served me well, but having a heart transplant was and is the ultimate solution for end stage congestive heart failure.  I am one fortunate fellow.

Rejection speed bump encountered and passed.  No one knows what the future will bring: the key is to live in the moment.  Easier said than done, when you don't feel well and are in uncharted territory.  I keep telling myself that the only easy day was yesterday.  It has become a kind of mantra, quietly repeated, but it helps.

Hence the Churchill quote in the working title of this post.

I've had a week off from hospital duty but go back again Tuesday for another right heart biopsy to check the rejection factor.  Even though all heart transplant patients take a number of anti-rejection drugs, the body's immune system can still rear it's head and cause havoc with the new organ.

Meanwhile, I've applied to LifeSource, the organ transplant procurement agent put in place by the federal government, to be a volunteer speaker to high school students and others encouraging them to be organ donors.

Many balk at the notion of sharing their organs and tissues. But without donors there would be no transplant programs. It is not that you are sharing an organ or tissue with a stranger but that part of you continues on and selflessly supports a life in one who truly needed it.  What a gift.  

Being a donor is courageous, in my view.

Be a donor. Visit: http://www.thenationalnetworkoforgandonors.org

Breaking Radio Silence: I have a new heart

Another chapter closed and the journey continues.  LVAD to new heart. It has been a journey, and the journey continues.

I donated all of my batteries, controllers, battery clips and all of the other LVAD equipment to the University of Minnesota LVAD program.  I do not need them anymore and hope my LVAD coordinator will find a good use for them. 

I have a new heart as of June 8, 2013.

My LVAD, a HeartMate II, stood me in good stead for 38 months and six days. The call for a heart transplant came from a U of M transplant coordinator on Saturday, June 8, before noon with instructions to be at the local airport in 30 minutes for an air ambulance ride to Minneapolis.  All I said was "Aye, Aye" and packed my LVAD gear as a backup plan. This could be another dry run and I'd need my gear to survive. It happened once before. 

The transplant didn't go too smoothly.  The new heart was in shock and acute rejection was suspected. The surgeon closed me up (of course I had to be told about all this since I have no recollection) and sedated me.  I couldn't breathe on my own so I remained sedated for 8 1/2 days. I'm told the new heart perked up about day 3 of the induced coma and has been doing fine since then.  

When the Rip Van Winkle-like sleep/fog began to lift, I immediately looked for my controller, the brains of the HeartMate II LVAD system, and couldn't find it.  I carried it 24/7 on my waist for 38 months plus.  How, I asked myself, am I living without my controller? It quickly became apparent that I had no need for a controller.  Freedom from being bionic. Waterproof again.  Fly fishing on the horizon. Not being waterproof with my trusty LVAD 
kept me in landlubber status for several years, since April 2, 2010 when it was implanted.

But after that long a period of intubation I had nothing left. I couldn't stand or walk, muscle tone was gone.  I had to learn to swallow again. Because of the large dosages of anti-rejection drugs, I couldn't sleep for three days, and still sleep fitfully. Once the meds are regulated, I'm told sleeping will  not be so difficult.

Now I can use light (2#) dumbbells to increase upper body endurance and the treadmill for 20 minutes.  Big improvement. Balance is returning.  But lack of a vegas nerve, which helps control heart rate, takes some adjustment.  I cannot just get up and get going but have to go slowly. Fainting is the problem because the new heart takes time to catch up with activity level.

So here I am in Minneapolis with an entirely different set of medications, anti-rejection meds, and a steroid among many others.

I was absolutely dependent on my HeartMate II, so it is not surprising that I looked for my waist carried controller several times in the first days I was conscious and could not believe I was alive without it.  The mind can play tricks. But I'm here and this post is not battery powered, for which I am forever grateful to my donor, my family, and my supporters. As an LVAD says, "the good saga continues." 

My Life at 9200 rpm's: Third call for a donor heart but alas no hat trick

Waiting on an organ transplant list has its ups and downs. Nothing new about that. My comrades and I joked in the military about hurrying up to wait. It was true more often than not.  But if you missed a troop movement or your ship sailed without you, the potential for a court martial stared back at you.

So far I have remained in readiness as a candidate on the heart transplant waiting list at the University of Minnesota since Hallowe'en 2011or about 18 months.  Since the number of donor hearts has been shrinking slightly each year, the waiting time is necessarily longer.

But still, I keep my cell phone charged and at the ready in case "the call" comes.  So far, I've had three calls, but none resulted in a transplant.  I'm calling it a reverse hat trick.  A hat trick is three scores in a sporting event like ice hockey by one player in one game.  For those who remember Gordie Howe, "Mr. Hockey," of the Detroit Red Wings, his version of a hat trick was to score, get an assist, and get into a fight in the same game. But I digress.

The first time I got "the call," I was told to stand down within 20 minutes.  Twenty minutes is enough time to upset anyone's applecart.  That time I did not get airborne.  The plan is to be flown by air ambulance from Fargo to Minneapolis.

The next time I got "the call" I was in Detroit Lakes, MN, about 50 miles east of Fargo. It was also a dry run. The weather was snowy, foggy, and winter like. DL was pre-approved as a launch point because it is closer to Minneapolis. My wife and I met the air ambulance at the Detroit Lakes Municipal Airport, watched the landing lights illuminate based on a radio transmission from the aircraft, and were whisked to the University of Minnesota Medical Center at Fairview.

I was fully prepped for surgery, which means ingestion of an array of medications including anti-rejection, immune system suppressants and others.  About 20 different, doctors and medical personnel talked with me about the "procedure" during the three hours I spent in "pre-op."

When my appointed time to meet with the transplant surgical team arrived, an LVAD coordinator told me the transplant investigative team called off the operation.  Better to find as suitable a donor heart as possible before hand than to risk problems after transplant,  I was told.  I agree.

Trying to fix something after installation can result in a whole set of problems that no one could have anticipated.  So there I was, along with my faithful wing woman, at the brink of the transplant operation when we were told to stand down, get dressed, and leave the facility.  

We repaired to a nearby hotel for the night and returned to Fargo by car the next day.

The third time I got "the call" was last week.  It came about supper time and the call was from my cardiologist.  After talking about the donor heart, which was described as "strong," I agreed to accept it.

Within about 30 minutes, the cardiologist called back and told me to stand down.  The investigative cardiology transplant team examined the donor heart in person and found that it would not be suitable for me after all.

So I've been through a "reverse hat trick." No heart but my faith and hope are strong.  Every day I am thankful that my LVAD, a HeartMate II, allows me to wait for a suitable donor heart.  

My Life at 9200 rpm's: It takes a licking and keeps on ticking.

John Cameron Swayze, the late TV newsman and Timex watch pitchman, made the phrase a well recognized advertising slogan for the wrist watch company in the l950's and into the 1970's.  Once, Swayze met an ocean liner as it landed, removed a Timex from the ship's keel, and uttered "It takes a licking and keeps on ticking."  Well done.

As for me, I'm still ticking with my HeartMate II LVAD, three years and three weeks after implant.  There have been a few challenges but the cardiologists at the University of Minnesota Medical Center, Fairview, overcame them and I and my family and friends are forever grateful.

A kidney infection and signs of a blood clot forming in the pump, caused me to be flown by air ambulance from Fargo to Minneapolis March 20.  I was in and out of the hospital (mostly in) over the next month, returning to Fargo as the Red River of the North tried to make up its mind whether to flood the city.

Because the LVAD is a continuous flow device, it pumps blood at a fixed pace until the pump cannot pump.  My fixed flow is 9200 rpm's, which moves more than five liters through my system every minute.  One effect of this constant flow through titanium is to break up some red blood cells.  

The shearing of parts of red cells can begin the clotting process because the body cannot tell that it should not stop the blood flow.  The doctors use medical terms for all of this but I've reduced it to English.

Since there is no way to see inside the pump, blood tests for things like hemoglobin and plasma hemoglobin have been used as indicators of what is happening within the pump.  Hemoglobin is the blood's oxygen carrying capability.  Measuring plasma hemoglobin gives a view of how many red blood cells are being cutup by the pump.

The point is that if the causes of the cell shearing cannot be slowed, stopped, and reversed, replacing the LVAD becomes a real possibility. The body cannot help itself in deciding to try to clot the perceived wound.  

Fortunately, after IV drug treatment and adjustment of medications that can negatively affect kidneys along with adjustments to other medications, my hemoglobin and plasma hemoglobin values began to stabilize.

No LVAD replacement for me for now.  I continue on the heart transplant list, awaiting a suitable donor heart.  As I've said repeatedly, without my LVAD, I would be toast.

My Life at 9200 rpm's: Who gets an LVAD?

I came across an on line article concerning the selection of candidates for LVADs.  How do you get one? Who decides?  What are the criteria?

Do you have to be at death's door before you can get one?

Here is the article from the online Journal of the American College of Cardiology that discusses what goes into the mix in making the decision.  http://content.onlinejacc.org/article.aspx?articleid=1555246

As noted before in these narratives, the ranks of sufferers with congestive heart failure swell by approximately 500,000 Americans a year.  Some 300,000 succumb to the disease. 

One point the JACC article made is that LVADs are gaining on the "gold standard" heart transplant, enabling surgeons and cardiologists to save more lives.  There simply are not enough donor hearts available.  But LVADs, while costly, are the best mechanical circulation support therapy available in 2013.

There is a bar graph showing the number of heart transplants per year for several years remains relatively stable while LVADs are being implanted at a growing rate.  The number of available donor hearts has remained in the 2,200 plus range for the last five years.  
LVADs have been implanted at a growing rate over the same period. At the rate LVADs are being implanted, the number will surpass the number of heart transplants quite soon.  I take from this that more people are being saved by LVAD therapy and technology.

I

   tried

            to include

                             a graphic

                                           from the article.

                                                                     But positioning proved

                                                                             a challenge.


                           (See below).

                          

 The figure at the right is from the JACC article and shows the increase in LVAD use from 2006 to 2010, the last year for which information was available.  The article has many other aspects,  I chose to focus on this one.

         

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 LVAD Life at 9200 rpm's: A heart, a heart, my kingdom for a heart

Shakespeare quoted King Richard III, the last Plantagenet English monarch, as shouting during a fatal battle some 500 years ago:  "A horse, a horse, my kingdom for a horse."

My paraphrase of the quote just popped into mind.

Richard, a reputed blackguard, was in his final battle against Richmond/Henry VII and Richard III found himself without a horse to continue the fight. Hence, his shout for a horse.  The demand went unanswered and Richmond/Henry VII killed the king in a battle on Bosworth Field in 1485. 

Richard was the last king of England to be killed in battle. That battle ended the War of the Roses.

In thinking about this narrative, unlike Richard III, I am clearly not in a demanding mode at all.  Also clearly I have no kingdom to offer in exchange for a horse/heart.  The point of the use of Shakespeare's Richard III quote was to call attention to the recent story of the archaeological discovery of the skeleton of Richard III.  

His bones were found under a parking lot in Leicester England, northwest of London.  Originally Richard III was buried in the floor of the cathedral at Greyfriars in Leicester.  The successor king was a Tudor.  The Tudors wrote the history of Richard III and other Plantagenets, casting him and others as evil and underhanded.  It was the Tudors who hanged his corpse on public display and permitted hacking at the body.

The successor Henry VII, and his followers were in charge of Richard III's burial.  The body was found in an unmarked grave. There was no evidence found of a coffin or shroud, and the naked body was put in the ground in a grave that was too short for the king, who as about 5'8" tall.  It took modern science to sort out his identity.

The story of the archaeological find gets complicated because the Leicester Greyfriars cathedral, home of a Franciscan order of Catholic monks, was destroyed during the Dissolution of Monasteries in the middle 1500's, when England's state religion became Anglican and Catholicism was banned.  Eventually, the site of the razed cathedral became a parking lot. Who knew?

The skeleton of a male was uncovered at the Greyfriars cathedral site last September and its DNA was tested.  Earlier this month, the lead archaeologist from the University of Leicester announced that the results of the DNA testing confirms that the skeleton remains are likely Richard III, beyond a reasonable doubt. 

Conclusive tests are pending, but the king's scoliosis (curvature of his spine) and various "humiliation" wounds (sword slashes to the face, an axe wound in the head, and a stab wound in the buttocks, for example) on the skeleton match accounts of Richard III's demise. The remains are scheduled to be reburied in Leicester cathedral. The Times of London suggested that the remains be buried in Westminster Abbey, the rightful final resting place for British monarchs.

Meanwhile, my LVAD is performing as designed.  The machine allows me to wait for a new heart.  With the HeartMate II LVAD, I have no signs of my end stage congestive heart failure: shortness of breath, easy fatigue, wheezing and assorted other deficiencies.

I continue as a listed candidate for a heart transplant at the University of Minnesota Hospital. 

Because of an infection at the driveline site, which is treated as a wound and dressed daily under sterile conditions, that I continue to   fight, I have not been able to exercise since last December 5.  Any additional abdominal movement, such as that during the use of a treadmill, elliptical machine, or recumbent bike, caused the fragile wound site to bleed and weep.

But in the last week, the site has sealed to the point that I've begun to use a treadmill at home. I'm not breaking any speed or endurance records and find it very tiring.  It is amazing the diminished conditioning level you experience, when you aren't exercising regularly. 

Another issue has been the level of anticoagulant medicine I need to keep a constant INR. The medicine most LVADs take to keep their blood from clotting easily and clogging the pump is affected by exercise, diet, and the antibiotics I'm taking.  If the INR is too low, clotting can occur. If it is too high, a bump to the head could produce fatal results. 

The journey continues.  I am among the most fortunate, and a beneficiary of modern science and technology. The alternative could have been burial, whether under a parking lot or not, is immaterial.

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: 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.

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: You can save up to 8 lives as an organ donor

The U. S. Department of Health & Human Services reports a good answer to the question Why Donate? The proposed answer:

"Because you may save up to 8 lives through organ                    donation and enhance many others through tissue donation.  Last year alone, organ donors made more than 28,000 transplants possible."  You can read more on the agency's website:  organdonor.gov.

Cornea and other tissue transplants helped another estimated 1-million people recover from bone damage, trauma, spinal injuries, hearing impairment and vision problems. However, thousands die yearly waiting for a donor organ that never comes in time.

I am on the heart transplant waiting list through the University of Minnesota Medical Center, having been listed on Hallowe'en 2011.
A HeartMate II LVAD gives me the chance to wait without the concern of many whose lives depend on a suitable donor organ.  


My LVAD is literally a life saver. But I am one of the grateful few with end stage congestive heart failure who can afford to wait.
Most others with end stage organ issues confront an unwelcome but inevitable consequence, death.

Based on the waiting lists and available statistics, about 79 people a day receive organ transplants in the U.S. but 18 people die every day waiting for a donor organ.  Currently there are some 116,000 people on waiting lists for various organ transplants. Some people are listed on lists at more than one transplant center, which is confusing.

Statistics are so sterile. Talking about the data, you forget that each of the numbers represents a human being.

After reviewing the website organdonor.gov, I learned some things I didn't know:  most people can donate, age is not a deterrent, most medical conditions do not disqualify a donor, and there is a need for minority donors.  

That need is caused by the greater likelihood that minority groups suffer three times as many end-stage kidney failures, which can be attributed to high blood pressure and other conditions that cause kidney damage.

Visit the website and make an informed decision to donate life.  You can register your preference for the Dakotas, Minnesota, and Wisconsin at www.donatelifemidwest.org

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).

My Life at 9200 rpm's: Welcome HeartWare

This week the U.S.  Food and Drug Administration gave approval to an LVAD that is smaller than mine.  It is made by HeartWare of Framingham, MA.  It has been a head on competitor of Thoratec's HeartMate II, which received approval as both a destination (read permanent) and bridge to transplant device by the FDA in early 2010.

In my view, the competition is healthy.  You cannot have too many lifesaving devices out there for those who have end stage congestive heart failure.  

With the approval as a bridge to transplant, HeartWare is seeking approval as a destination therapy device. Undoubtedly, it will succeed.  Here is a link to one account of the approval:  http://www.medpagetoday.com/PublicHealthPolicy/FDAGeneral/36041

The American Heart Association estimates that there are more than 5 million Americans with congestive heart failure, a figure that grows by about 600,000 per year.  Because of other medical issues the number who can receive LVAD implants is quite small.

In the past few years, the HeartMate II has been implanted in more than 10,000 patients worldwide. Mine is number 8358, and it was implanted in April 2010.  The 10,000th HeartMate II was implanted this year. That computes to 750 to 1,000 of Thoratec's LVAD being implanted yearly.  Compare that multi-year total with the estimated 600,000 new CHF sufferers added to the ranks and you can see how few LVADs there are.  Hence, welcome HeartWare's HVAD.

HeartWare's pump is smaller than the HeartMate II. The external gear, computer controller and batteries, are smaller and lighter weight.  The set up makes an LVAD accessible to smaller sized adults and children.  

The HeartWare pump is called an HVAD.  It is based on a centrifugal force to pump blood to assist the CHF sufferer's inefficient left ventricle.  The HVAD is shown as being attached to the lower side of the left ventricle. 

 Like the HeartMate II, the HVAD system has a percutaneous lead that exists the abdomen of the patient to connect with the external controller and power source.

The HVAD batteries are worn in pairs but the system apparently works on one battery at a time and the system shifts to the spare battery after about six hours.  The spent battery must then be changed out.

The HeartMate II is a continuous flow, non-pulsatile device.  Mine is set at 9200 rpm's.  Other HM II's go slower and faster as determined by the LVAD team.  It runs on two 12 hour batteries at a time.  The controller and external batteries are weightier than the HVAD's.

Having more approved ventricular assist devices available in the medical marketplace is a good thing.  More options.

If you suffer from end stage congestive heart failure and are otherwise healthy enough to tolerate the surgery, get the facts from a VAD center physician.  

From my experience, not every cardiologist is knowledgeable about LVADs, their benefits and drawbacks.  But at a VAD center,  like the University of Minnesota Hospital, Mayo Clinic, or Abbott-Northwestern in Minneapolis they do. Don't delay.  Get an assessment of the potential for LVAD implantation.  

The life you save, may be your own.

Life at 9200 rpm's: Waiting and Living

     What does an LVAD do while waiting for a heart?  I can't answer for anyone but me.  I'm enjoying the fall weather in Fargo and at Detroit Lakes.  

     Today I helped build and load a firewood rack with about a cord of wood.  The house fireplace is gas operated, but we have a chiminea that seems constantly in use.  A chiminea is an outdoor fireplace made of earthenware shaped like an upside-down fat light bulb.  It sits on a wrought iron stand and the narrow part is the chimney.

     The dogs, our four and a visiting fifth, romp in two feet of oak leaves.  Their coats smell slightly of wood smoke.

     It is overcast this afternoon and the lake is flat.  A few late season muskie fishermen ply the waters several hundred yards off shore.  I've heard that a few monster fish have been caught, photographed, and released this year. There a size limits for keeping these fresh water sharks.  

     Mounting them using a taxidermist has become prohibitively expensive.  The preferred method is to use photos to recreate a plastic resin model that replicates the fish.  That way someone can catch Mr. Muskie again, if he knows what he's doing.

     Frank Vacek, a Canadian lodge owner and guide, took a crew of us out on Lake of the Woods from Sioux Narrows, Ontario, one June in the early 70's.  Our boats all had 15 horse outboards on them.  

     As we fished along trying for walleyed pike, Frank caught sight of a muskie closely following the propeller of one of our boats.  He called out to keep the boat steady until Frank signalled to cut the engine.  It took less than a minute for all this to happen.

     Frank cast a muskie lure that must have been 10 inches long between the boat's propeller and the following fish.  He timed the cast well and called out to cut the motor.  At that point, Frank cranked the muskie lure away from the stopped boat propeller and enticed the muskie to follow.  Despite his skill, Frank couldn't tempt the big fellow to strike but the whole spectacle was worth it.

     Later, back at the lodge, Frank said he once had a muskie attack an outboard propeller.  The prop had teeth marks on it but the engine won the battle.

    My HeartMate II gives me the chance to be with family and friends.  It is the lifeline that allows me and other LVADs to wait and live.

     I read that the International Society for Heart & Lung Transplantation has data that show that about 60 percent of heart transplant recipients age 70 and over live at least six years from the time of transplantation.  About 80 percent of patients getting new hearts because of damage caused by coronary disease survive at least six years.

    The same data show that about 70 percent of LVADS survive about the same length of time after receiving a new heart.  The data involve transplants between 2002 and 2009.

     Research has shown that being on a waiting list for a heart transplant with an LVAD, has reduced the mortality rate.  My heart surgeon at the University of Minnesota in Minneapolis, Dr. Ranjit John, has been quoted as saying that mortality has been reduced for LVADs into the single digits.

    LVADs account for more people than heart transplants.In the United States about 3,000 ventricular assist devices are implanted yearly compared to about 2,500 heart transplants.  The transplant rate has not increased since 1994.


     Having an LVAD can keep a wait listed transplant candidate alive for several years.  That fact was not always the case.

     Fewer hearts are available for donation because car air bags and the use of helmets by those engaged in high risk sports have reduced the number of fatal head injuries in young, healthy men--the most common source of donor hearts.

     I am alive today because I got an LVAD.  It has been reported that as many as a third of those receiving heart transplants have a similar mechanical circulatory assist device.  What the LVAD has done for me is to underwrite my exercise and conditioning to be better prepared for a transplant, if one occurs. 

     My HeartMate II LVAD manufactured by Thoratec Inc. of California cost about $80,000.  Installation is extra.  I had my chest opened three times in 11 days to implant the pump and stop bleeding.

     A Duke University study on the cost effectiveness of LVADs cost $360,407 over five years.  A study of treatment to that former Vice President Cheney received showed the yearly cost was $167,208 for every year of life saved. 

    How does anyone assess the cost effectiveness of such treatment?  One cost effectiveness figure showed that $50,000 was acceptable with a range up to $100,000 per year of life. A European study in 2011 showed a cost of $414,275 per year of life saved.

     At 68, I'm three years younger than Cheney.  My overall health is excellent.  My LVAD has forestalled a life count down as the Society for Heart & Lung Transplantation suggests.

     I am grateful for the opportunity to be living and waitng.

     

     

    

My life at 9200 rpm's: anti-coagulation drugs are no joke

      I returned to Fargo from my LVAD checkup in Minneapolis Monday only to trip on the back steps and hit my head on a metal chair.  No big deal, I thought.  It hurt but it wasn't a powerful  blow.

    Enter warfarin/coumadin, which most LVADs take as an anti-coagulant agent to keep the HeartMate II pumping smoothly and clot free.

    To be safe, I went to the ER and the doctor, who is LVAD savvy, ordered CAT scans of my head and neck.  The scans showed no brain bleeding or cervical spinal damage.

   I now know first hand what a goose egg looks like as my forehead swelled and protruded.  A day later gravity moved the bruising from the goose egg to my right eye and face.  The next day (Wednesday) my right eye swelled shut from the accumulation of coagulated blood.

     My eye doctor found no muscle damage or other damage to the eye itself. Good news.  I return today for a followup exam.

     This morning the bruising had spread to my left eye and face.  With Halloween on the way, I don't need to look for a mask.

     I would include a photo but frankly I don't recognize myself.  More importantly, I wouldn't want to deter one potential LVAD recipient from getting a pump.  

     The anti-coagulation regimen is necessary for me to survive.  Injuries happen.  I'm using hand railings on all stairs.  As the London Underground announcement reminds riders when the doors are about to close:  Mind the gap.  That goes double for LVAD warriors.

My LVAD life at 9200rpms: LVAD support group situation report (SITREP)

    Since September, 2010, I have been attending monthly gatherings in Fargo of those who have LVADs and some who have had heart transplants.  For those seeking an LVAD, know that if the implant is successful and you get to go home, the sailing will not necessarily be smooth.  

     For some of us, it takes months to feel relatively normal.  Regular exercise and healthy diet help.  Attitude is key.

     Fortunately for me, my LVAD and body are compatible or as one of the Mayo Clinic cardiologists said, "you tolerate the pump well."  Heck of an endorsement, right?  I've talked about this before but strokes and drive line infections kill LVAD owners more than any other complication.

     The LVAD support band brothers and sisters at Sanford is a mixed group by education, age, and work history.  What we all have in common is an appreciation of life, what we've overcome, and a sense of gratefulness of each day.   

     In early 2010, the FDA approved Thoratec's HeartMate II for both destination therapy and transitional or bridge to transplant therapy for end stage (read ready to die) congestive heart failure patients. No other LVAD maker can make that claim. 

     Even though I've had mine since April 2, 2010, I am under no illusions about their capabilities.  Heart pumps are not fool proof. While no maintenance is required,  they are machines and can fail. 

     An LVADs meds need to be monitored closely.  The meds generally are to control blood pressure, and heart rate, and to try to ensure that an LVADs blood supply has a slower clotting rate than normal.  The pump cuts up red blood cells, technically called hemolysis, which can lead to anemia.

     Strokes and dizzy spells were discussed at the most recent meeting.  As I understand it, blood pressure for LVADs is maintained lower than it is for healthy hearted people to ease the ability of the heart pump to do its work.  When a person's blood pressure is kept low, standing suddenly can cause dizziness or fainting.

     Several of the dozen LVADs have experienced dizziness and fainting.  One participant who has had a heart transplant approaching eight years, said simply that he has purposely made himself get up more slowly.  Makes sense.  Who remembers to rise slowly every time.  Events happen.

    Another group member has experienced his second stroke as an LVAD.  It hospitalized him for some time.  He reported that his doctors at the University of Minnesota attributed the stroke to hi LVAD breaking down or cutting up red blood cells.  The cells collect and cause a clotting effect.  I'm not a physician or an engineer, but the explanation seems valid.  

     So the question becomes How does an LVAD owner guard against a stroke?  There is no simple answer, I'm told.  Pump speed can be reduced.  Mine is set at 9200 rpm's as the top end based on Mayo Clinic's experience that higher pump speeds cut up more red blood cells. Conversely too low a pump speed can lead to clotting and other serious even fatal incidents.  But without the pump, I and other LVADs would be only a memory to our families.

    Drinking fluids,  staying hydrated, is also critical. The Camelbak company that supplies water reservoirs you carry with you had a slogan that is more true for LVADs than thirsty hikers:  Hydrate or Die.

    Maintaining an INR (International Normalized Ratio) within the range prescribed for LVADS is another factor.  A normal person's INR is about 1.0.  My INR range is 2.0 to 2.5. My friend's must be maintained above 3.0. These elevated INR levels help keep our pumps from having fatal clots.  

    I have a home monitoring kit with which I test my INR once a week and report the results to the Sanford Anti-Coagulation Clinic and the kit's manufacturer.

    In many ways, LVADs are pioneers.  We are the few in daily experimental mode.  Over 10,000 HeartMate II pumps have been implanted world wide.  I don't think about being a pioneer.  It's enough to be here in 2012.  If my LVAD gets me to the point where I get the gift of a heart, that will be a good thing.  Meanwhile, I'm good.  Never quit.