Fly fishing again: the gift of a new heart

Memorial Day weekend is the usual Minnesota bass fishing season opening. With the HeartMate II for 38 months, I missed a few openers.

But this year, sans LVAD and feeling good with my new heart, I got to go fishing with my son on Big Detroit Lake, 50 miles east of Fargo.  My new heart keeps giving me gifts. Going fishing might not seem like much of a gift to the able bodied  but to me it was sublime. 

This year I am waterproof and do not carry lithium ion batteries to power my heart pump and do not have to worry about sudden immersion like falling overboard.  Sudden or any immersion with an LVAD was no joke. You short out the pump/electrical system and you may short out your existence. 

Although last year I became waterproof I wasn't physically up to being an active fly fisherman.

I am holding positive thoughts for a friend waiting for a new heart at Abbott-Northwestern Hospital in Minneapolis. Some of his wiring is wearing out.  

It is the Achilles Heel of the HeartMate II system, the internal driveline, which carries power from his batteries through a paperback sized computer on his waist. The driveline has frayed at the pump. The pump is internal and the driveline is too. What to do? Replace the pump or wait as an inpatient in the hospital for an acceptable match. His attitude is good.  As an Army Ranger, he knows how to adapt and overcome.

The fraying has caused temporary--so far--short circuits, which have reduced the pre-set speed of his pump.  Mine ran at 9200 rpms, hence the running title of this blog.

When a short circuit happens, and there is no predicting when one will occur, the pump drops in speed, slowing the flow of blood to the heart and major organs.  

A short circuit could cause the pump to fail and stop working.  The result simply stated could be death.
You can read about his situation on his blog,
www.waitingforanewheart@blogspot.com

Another form of rejection emerged this week

For me as a relatively new human heart transplant recipient I find the adage "there's always one more s.o.b. than you counted on" is painfully true.

I'm back in the U of MN hospital for a stab at overcoming a suspected organ rejection episode. 

The newly (for me) type of rejection is biopsy negative rejection or BNR for short. In overview, BNR has to do with antibodies in the blood that have developed and may be silently attacking my new heart. It is thought to be rare, but has been picking up investigative attention.

As the name suggests, BNR falls in between the lines.  Although my biopsy procedure at the U of MN is designed to weed out the two more common rejection forms and reveals those forms, cellular rejection and a limited number of antibody rejection factors.

BNR is one of those grey areas that only a few institutions are actively investigating. The Johns Hopkins University Medical School is one of them.  I've learned there are hundreds and hundreds of antibodies that could show up in the blood.  

The well known ones are identified by a staining method, which produces a colored microscope slide that is interpreted by a pathologist.  But not that many antibodies that impact rejection are well known and those that are are caught by the current process at U of MN's lab.

So I'm generalizing when I say that the learning curve for heart transplant patients has some hidden elements that apparently surface on a need to know basis. 

Well this week, it became my need to know. My ejection fraction seemed to mysteriously drop from 60-65 per cent efficiency to 40-45 per cent efficiency. What happened? I feel good. What's causing the problem.

Turns out that my transplant cardiologist is doing research on BNR with her mentor at Cedars Sinai Hospital in L.A.  Cedars performs more heart transplants than any other U.S. transplant center. Eighty have been done this calendar year to date with six in the last week.

That was news to me, but pleasing news. When my doc asked to see a copy of the article in the January 2013 issue of the Journal of Transplantation, she recognized the author as one she's known a long time and is her mentor.  Here's the link. http://www.hindawi.com/journals/jtrans/2013/236720/ 

I'm hopeful that my cardio team will get this sorted out. The Johns Hopkins lab results are not expected for several weeks.  Meanwhile I underwent another right heart (site of the 'new' heart) catheterization for biopsy samples and pressure checks.  It is unusual to order two such procedures in two days but the situation demanded it.

Meanwhile, I'm composing my unaddressed letter to my donor family to thank them for my gift of life from their selfless family member.  I wanted to wait a year.  

Federal law bars hospitals from identifying participants in a transplant procedure without their permission.  I write first.  Maybe I'll get a response.

At any rate I'm here, alive and waterproof. This amazing saga continues. Now if I could only catch a fish.

Thoughts on getting a new heart: it's a team effort

After my most recent visit to the U of MN Heart Clinic in Minneapolis last month, I came home thinking how little I know about heart transplant after care. 

I have become aware that everything that happens to the other organ systems post-transplant is interrelated. 

A heart transplant can cause a myriad of unexpected consequences.

The anti-rejection medications interact with other medications and issues arise.  The suppression of the immune system is unpredictable and you can more readily develop infections from bacteria, viruses and fungi.

The point is I don't know what I don't know. Fortunately, the cardio team finds answers.  Experience counts. And they all have the help of other transplant team consultants.

 I now have

--one principal cardiologist and a host of heart consultants (the cardio team has the final say about my care and treatment); 

--a nephrologist for my kidneys, which seem to have issues that are likely drug induced based on my regimen of the anti-rejection meds;

--an infectious disease doc, sorting out my pneumonia susceptibility; 

--a dermatologist, sorting out pre-cancerous lesions;

--an endocrinologist, helping me with steroid induced diabetes;

--an ophthalmologist, helping with drug induced eye issues,  and 

--a consulting transplant pharmacist.  

That's at least a thimble full.  There will undoubtedly be more.

Every day brings a challenge and a new issue, it seems.  No one promised fair winds and following seas.  The new heart is only the first step.  Clearly, it takes knowledge and work to maintain and to keep the gift of a new heart. 

Without the help and support of my caregiving wife, I literally would not be here. She is at once: a factotum; an advocate, ever  vigilant and an effective cross examiner of the team of doctors and nurses.  She gets answers and results.

It takes time to accept the reality of the constant vigilance and preparedness.  My next scheduled clinic follow up is later this month.

Over the drill ground (called the grinder) at Coronado, California, home of Navy SEAL training, there is a slogan on the building that fronts the drill area:  

                                The only easy day was yesterday.

The SEALs are a "mission driven" outfit.  When a SEAL team completes a mission, and survives--often in the face of death--the team faces a new day and a new mission.  The implication is that surviving yesterday guarantees no easy future.  So "the only easy day was yesterday."

The slogan takes on new meaning for me with each passing day. The saying was first used when the SEAL teams were formed during the Kennedy Administration. 

If it's good enough for them, it is more than good enough for me.

Six months downrange from transplant: it seems like yesterday

June 8, 2013 was the day/night I hung up my LVAD and lost my bionic blood flow.  The HeartMate II LVAD kept me going for 38 months until a suitable donor heart could be found.  That is a miracle all by itself.  I had a few weeks to live in April, 2010, when the pump was implanted. 

It saved my life and I am grateful that the LVAD permitted me to wait and to receive a new heart.
Just in case, while I was at St. Mary's Hospital at Mayo Clinic, I wrote my obit.  That is harder than you might think.  It is what is called "a hold for release" obit, written in advance of the final event.

As my 30th month of LVAD living came, so did a driveline site infection.  The infection never completely healed.  At about 33 months after LVAD implant, clots began to develop in the pump.  The solution was to increase anti-coagulants.  The alternative was to exchange the HeartMate II.  The cardio team at the U of Minnesota opted for increasing anti-coagulant therapy.  Replacing the pump posed the risk of developing significant anti-bodies based on the transfusions needed for the operation.  More anti-bodies did not bode well for the likelihood of finding a donor heart match. The fewer significant anti-bodies a potential recipient has, the better chance for a donor match.

After the 38 months, I match was found and I'm here, upright and thriving.  There are some pitfalls. The one I deal with daily, for example, is the combination of drugs I take to minimize/manage potential rejection of the new heart by my immune system.  Getting the levels of the drugs in balance is a persistent pharmacological test for the cardio team.  It can take up to a year to get them in balance.

While the U.S. Food and Drug Administration has approved the HeartMate II for both "destination (no chance for transplant) therapy" and "bridge (transplant listed) therapy," some problems have developed in the clotting arena.  A recent study published in the on-line version of the New England Journal of Medicine showed that clotting in LVADS was occurring sooner than the initial trials disclosed.  Here is a link to the article http://www.medscape.com/viewarticle/815186.

The suspected causes of the clotting are the continuous flow of the LVAD, which can cause red blood cells to shear into pieces that can form clots, and the heat generated by the pump can cause clotting issues.

As I said, I am thankful for the miracle of medical technology that gave me three years to wait for a heart.  I am also thankful that I am no longer bionic.

Please remember those in need and become an organ donor.  Your gift could save a life.

Five plus months down range from a heart transplant: Adapt and Overcome

The combination of drugs I take to stave off rejection of my new heart, particularly Prednisone, a well used steroid, are playing havoc with my blood sugar levels.  

I'm told that normal blood sugar levels are about 100 mg/dl.  Newly transplanted patients often experience higher blood sugar levels until weaned entirely from Prednisone.  My levels have ranged into the low 300s. Continual high blood sugar can interfere with the healing process.

Within the first weeks after transplant, I was administered both long acting and short acting insulin to tame the high blood sugar levels.

Then after several weeks the insulin regime ceased.  Don't worry about it, I was told.  The blood sugar levels will return to normal in  time.

Last month, the cardio team at the University of Minnesota Hospital decided that an insulin regimen.  I take the long acting variety once a day and the faster acting variety before meals.  

I carry my blood sugar monitoring kit with me in my "go bag," which also has juice, hard candy( juice and candy are needed when my blood sugar falls below 70), procedure masks, hand sanitizer etc. as part of my standard kit.  Not a heavy as the LVAD bag, but I don't leave home without it.

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: 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: First Thanksgiving Post

This series of narratives began last June, after visiting Thoratec in Pleasanton, CA.  I got to meet other LVADs, and learned that some of them were already blogging.  

I'm uncertain about who may be reading these posts, which I must say I believe wouldn't interest very many people other than friends and family.  At the same time, some of the posts about life with an LVAD may be helpful to others who have end stage congestive heart failure or know someone who does.  That population in the U.S. alone is huge and growing by the day, month, and year.  Many are not as fortunate as I have been to be healthy enough to receive a Heart Mate II (or any LVAD for that matter).  Many have had complications:  strokes, internal bleeding, drive line infections to name a few.

As Thanksgiving 2012 approaches, I am committed to continuing to pursue this blog in the hope that some may find a nugget of information or encouragement that might help them.  In my case, as I've made reference, I did not have any other choice: get an LVAD or do not pass go but proceed directly to the cemetery.

I am thankful that, in the words of one Mayo cardiologist, I have tolerated the LVAD well enough to be almost 32 months downrange from its installation.  I was curious about the use of the word "tolerate" in referring to the LVAD.  I have learned that many LVAD recipients have had health issues that I've seemed so far to sidestep.  I am so fortunate.

But my attitude is that just because I got an electro-mechanical circulatory support device, that does is not guarantee anything.  Today is all anyone can look forward to, and that notion applies especially to to me as an LVAD.  That is not a negative.

I have been listed for potential heart transplant, which my LVAD has allowed me to do.  If such is to be in my future, it will present a different set of challenges.

Recently, I read a CNN health blog that featured a singer, Charity Tillemann-Dick.  She is an aspiring opera soprano from Denver whose lungs failed two years ago because of pulmonary hypertension.  The operation, a double lung transplant, was successful but she began to experience  failing lungs again recently.  

She blogged about her ordeal and the blog post appeared on CNN's "The Chart" health blog. She needed a second double lung transplant.  She was in a hospital ward at the Cleveland Clinic where another young woman, who also awaited a second double lung transplant.  The other woman was not as fortunate as Tillemann-Dick.  She died six months before Tillemann-Dick was matched for a second double lung transplant.  The wait for a donor organ or organs can be a killer.  My LVAD has allowed me to wait.  

Two heart donation offers have been made to me through UNOS's ever watchful computerized selection site.  An offer is no guarantee. I am fortunate that the University of Minnesota transplant surgery team called a halt to both offers, which were found not to be suitable during on-site inspection.  I am grateful that I can wait without pain, discomfort, or significant tribulation. 

Best to all LVAD Warriors and their families.  We all have good reason to be thankful.

My Life at 9200 rpm's: Another dry run but alas the donor heart was unacceptable

It was only a 35 minute trip to Minneapolis from Detroit Lakes by air ambulance.  We landed at an airfield at Blaine and went by ground ambulance to the U of MN medical center. Tension was high.

After a frenetic 2 1/2 hours, I was wheeled to the operating room theater. The LVAD coordinator on call met me and the anesthesiology team and said the U of MN surgeon on site to assess the donor heart determined it to be unacceptable, and the operation was called off.  We were told to stand down.

We learned that the donor's heart was deemed unacceptable by the inspecting surgeon.  Reasons are rare, if given at all, for these kinds of decisions.

The LVAD coordinator said that while frustrating not to have undergone the transplant, any organ can be rejected by the harvesting surgical team or the transplant team until the operation is underway.  Unacceptable donor hearts apparently are more common than I understood them to be.  The LVAD coordinator with lots of experience said that problems with the donated organ are typically magnified once the transplant is accomplished.  I am fortunate to have been offered a heart.  That things didn't work out is a fact.  

It simply was not my time.  I remain good to go and am getting practice for the next alert, if, as, and when it comes along.  UNOS is at the helm.  Two offers of a heart in three months is a lot.

Meanwhile, my HeartMate II is serving me well.  What a luxury it is to have such an option.  Without it, I wouldn't be here to write this post.  I am grateful.

My Life at 9200 rpm's: LVAD/Heart Transplant Support Group Sitrep

     Once a month about 20 people meet at Sanford Clinic in Fargo to support each other as LVADs and heart transplant recipients.  That statement is quite sterile for our earthy group. 

     We are brothers and sisters based on our shared experience. Having an LVAD has its challenges. We talk about our common experiences, sharing our confidence and concern for each other. We can trust the information we exchange.  That's what support groups do.

   About 10 of us have LVADs, all HeartMate II's; three have received hearts, and the rest are caregivers or those with a connection to the group.  

     One of the questions we aired with two Sanford staff that attended  was aimed at ensuring LVADs have a better chance of survival during a medical emergency requiring action locally in Fargo.  To their credit, they took notes.  I'm confident something positive will come of the discussion.

     For me, the bottom line is that Sanford does not have even one pair of the specialized, 14 volt lithium ion batteries that all LVADs use to power their pumps during waking hours.  The sense of the group was that the situation should be assessed by the powers that be and hopefully rectified. Stay tuned.

     Having a pair of batteries would mean acquiring a charging device.  The batteries come in boxes of four with two boxes of batteries, eight in all, for each LVAD. 

    Sanford has undertaken to provide care for 10 or 12 LVADs locally so that we don't all have to travel to the University of Minnesota for every cardiology appointment.  The U of MN agrees with the approach.  Fargo is 3 1/2 hours from Minneapolis.

     Co-operative care, called Shared Care, is a great idea.  Right now I see a medical professional concerning my LVAD status every month and a half: alternating Fargo and Minneapolis.   The U of MN implants LVADs.  Sanford, I'm told, hopes to be an LVAD center in the next few years.

    The problem is that full support of us as LVADs would mean that all of the equipment we routinely use should be available in the ER.  The expense of having functioning battery sets, the battery charger, a power module, display module likely would cost umpteen thousands of dollars.  

     Nothing Thoratec, Inc., manufactures is inexpensive.  The equipment is unique to the HeartMate II.  You cannot simply get replacement batteries at the local battery store. The sophisticated battery charger is specifically for to HeartMate II batteries.

   The LVAD itself is in the neighborhood of $75,000.  Installation, of course, is extra.  Not a cheap undertaking.  For all the gear that goes along with keeping LVADs functioning, the price tag is off the charts.  Just thinking about it makes me doubly aware of how fortunate I am and we LVADs all are.

     Despite its cost our treatment to date to relieve congestive heart failure has kept us LVADs alive and thriving.  Worldwide, some 10,000 HeartMate II's have been implanted over the last five years. The dollar investment is vast.  What's the price of life? 

   

     

     

My Life at 9200 rpm's: Heart Felt Fall Reflections, LVADs, Transplants, and Dick Cheney

     Fall brings shorter days and the area around Fargo shifts to cold weather mode. A wag once said North Dakota has two seasons: winter and road construction. 

    It snowed and rained this week just as several yards of dirt were about to be applied to the side yard.  We've had a dry year so far and thought now would be the time to address the low lying yard that attracts any available runoff water from every direction. The weather didn't exactly cooperate.

     The area of our yard turns into a swamp because of the grade. Swamp conditions and several canines do not mix well when they return to the house.  They are cute but clueless about paw prints and tracking.

     The wind borne snow, which didn't accumulate, shook off leaves from the birch, elm, and so-called seedless cottonwoods and  loosened apples from our lone apple tree on the north side of the house.  Overnight temperatures are at freezing and the daytime temps are lucky to be 10 degrees warmer.  Time to start thinking about the snowblower and gathering outdoor weather gear.

    The fill for the yard will arrive this week. Apple pie sounds good.  The snowblower won't start and needs an oil change.  I located my parka, mittens, and boots.  I'm good to go thanks to my LVAD #8358.

     Among the reflective interludes I had was one of former Vice President Dick Cheney, who had a HeartMate II LVAD for more than 20 months before he received a new heart at age 71. His story is inspiring to me. 

     He had many heart related events during his adult life, starting at age 37 with his first heart attack in 1978. He had two other heart attacks in the 1980's. and underwent bypass surgery, angioplasty, and had stents installed.  In fact, Cheney's heart treatments parallel most of the major pharmaceutical and medical procedure advancements that have developed since 1984, when he suffered his first heart attack.

     His heart condition caused him significant pause when he became a vice presidential candidate. Cheney determined that he not want his heart condition to cause a Constitutional crisis or at least a disruption in the event he was totally disabled.  

     The 25th Amendment to the Constitution,  on presidential succession in case the chief becomes incapacitated provides for the transfer of duties for the President but not what to do about a vice president who is unable to perform the duties of his office.  

     Cheney wrote in his 2011 memoir that when he joined the ticket with George W. Bush he planned to write a letter of resignation and keep it on hand where an aide could access it, if Cheney became incapacitated.  Fortunately, his heart condition never incapacitated him to the point the letter of resignation had to be submitted to the Secretary of State.

     I learned for the first time that when Cheney's LVAD was implanted, that he was unconscious for several weeks after the surgery.  His surgeon  told a New York Times reporter, who himself is a physician, that Cheney's 20 plus months with an LVAD was not free of events that were not otherwise specified.

     After all that travail, Cheney's is an amazing story. At 71, he is blazing a trail for all of us older persons awaiting the gift of a new heart.
    
     I am extremely fortunate that the University of Minnesota policy permits me at age 68 to be wait listed for a heart transplant. My part of the bargain is to stay in good overall health and maintain myself with the LVAD since congestive heart failure is a permanent irreversible condition.  

     None of my other organ systems have been compromised, I'm told, and so good health has allowed the U of MN heart transplant team's thorough evaluation of me as a candidate for transplant to give me the thumbs up.

     For patients 65 or older, it has been reported that 243 patients nationwide received new hearts in 2006, while in 2011 there were 332 heart transplants. The data comes from the national Organ Procurement and Transplant Network.  There is no data available for the over 70 group like Cheney.  

     Meanwhile, without the life giving LVAD that has stood me well these past many months, there would be no fall reflections or any other reflections for that matter.  Besides, the apple pie sounds terrific.   
     

Life at 9200 rpms: shift colors

     "Shift colors" is a Navy term that generally means a change in a ship's flag flying status.  It's when the American flag on a Navy ship is moved from flying above the bridge on a flagstaff to a lower point on the ship's fantail, signifying that the ship is docked, pier side, or at anchor in a harbor.  

     When the Navy ship gets underway, when anchors are aweigh, the colors are shifted from the fantail to a flag staff above the height of the bridge.  The bo'sun pipes a single long tone and passes the word "Underway. Shift colors."  

     The process is orderly and takes several sailors to complete moving the flag.  In reality there are two national ensigns, one for in port use and another for use underway or steaming.

     In my case, I shifted colors on 18 August from heart transplant wait list status 1-A (head of the line) to 1-B(the next category in line). There was no fanfare, no bo'sun's pipe.  But all is good.  I was not fortunate to obtain the gift of a new heart during my 30 days.  So be it.

     My confidence remains solid.  My LVAD coordinator said that in his experience most LVADs receive their transplants while in 1-B status.  I am solidly confident only because I'm alive and well thanks to my mechanical blood circulation device,  which remains a marvel of modern medicine and surgery to me and other LVAD owners.  

     Thanks to my HeartMate II, no. 8358.  It has been two years, four months, and 18 days since Mayo surgeons hooked me up.  Physicians and nurses at the University of Minnesota have cared for me since then.

     In honor of "shifting colors," I intend to go fly fishing tonight along the lake shore from my Port-a-bote.  Thoreau once wrote something to the effect that some men go fishing all their lives and never realize its not the fish they're after. You are absolutely right, Mr. Thoreau.

Second 'heart-iversary"

The LVAD Coordinators and cardio team at the U of MN sent me a birthday card for my second Heart-iversary. I was pleased to get it.  Thank you. 

HeartMate II #8358 is functioning as designed.  Implanted April 2, 2010. This episodic narrative, misspellings and all, is about life from the LVAD recipient's perspective. 

My son and I went fly fishing Sunday night on Detroit Lakes 50 miles east of Fargo.  We caught a few small mouth bass, sunfish and some rock bass during the witching hour just before nightfall.

I am not the first to add my $0.02 to the hopeful news and views about the miracle pump that keeps me alive.  Thanks to Michael Joshua Morris for his inspirational efforts in his blog:  From the Bottom of My LVAD.