How Can You Anticipate the Velociraptor Attacks?

I'm not very big on SciFi-ish type movies (Joe is a FANatic), but in 1993 when Jurassic Park hit the big screen, the thing that stuck in my mind were those awful little Velciraptors who were so freaking smart - they sent one out in front so that their victims minds were occupied with fearing them, while the rest would come from the side - right off of the peripheral vision - the victims had not a chance.  They were attacked visciously and the outcome was not good for the human kind. 
Long story short, we feel as if we have been through the viscious sideways attack by a gaggle of velociraptors.
I did not think I would ever be able to write this chapter of our lives, or maybe even ever write again, but here I am, once again.
Velociraptor Attack Number One:
I must tell you that changing transplant/implant centers is one of the most stressful things you will ever do, if it becomes necessary for you to do so.  In our case, we built up such a rapport with our "LVAD Team", that moving away from them was like moving away from family.  The people (from the surgeons to the housekeepers) were so perfect for us - we were so well taken care of, spoiled you may say.  We can honestly say, "If you find yourselves in Salt Lake City at the Intermountain Medical Center - you are in very good hands."....and now we're at the new center.  The differences are many, and it's hard to adjust, but like the troopers we are we are trying to give it our best.  Our reason for changing centers was because my folks health was not the best, and we thought we could take care of them too.
Velociraptor Attack Number Two:

Mom with our first son, Bobby (he's 35 now)

As alot of you know we lost my Mom on November 21st, and this is where it gets hard for me to continue my good fight....I got lost in such a fog, and my poor Joe was right there in that fog with me.  My mother was my best friend, my rock, my mentor and in a blink of an eye she was gone.  She was the strongest and most wonderful influence in my life.  My mother was also Joe's "Mom".  He lost his own mother as a very young man and my mom and my husband "loved each other from first sight".   Her health had been failing for a few years now, and she took her continuing lack of independence as a personal affront - one she could not tolerate.  She was in the early stages of altzheimer's, along with suffering from a very painful and debilitating disease, and just couldn't bear being a burden to anyone.  I understand why she's gone - but I will never, ever adjust to her not being here to influence my life, or my childrens lives, or our grandchildrens lives.  What I miss the most, right now, is her telling me, "Breathe Jenny, just breathe".

January 11, 1952

Velociraptor Attack Number Three: 
We have not had the time it takes to grieve her loss, because my father was also ill and needed care (also a dignity he could not bear) and the grief that he was going through, blocked me completely from attempting to deal with circumstances, and a very short 5 weeks later we woke up one morning and he was horribly ill.  We took him in an aid car to the ER and an after an agonizing 7 days of coma, assuring him in his ear that I understood and it was ok, in the ICU we lost him too.  The only way we all have been able to deal with this is that he died on their 60th wedding anniversary - a goal they were both looking forward to, so much.  Even though our hearts are broken with the loss you have to admit - it was almost the ultimate in romantic, for him to miss her so much that he had to leave on their special day - so they could be together forever.

In the aid car dad made Joe and I promise that no matter what we would go on with the "Celebration of Life" that was planned for mom.  It quickly turned into a "Double Celebration of Life".  We only had days before the celebration, so I'm sorry to say some of my parent's friends arrived to celebrate mom's life and found out that day, that they had both passed.  To those people, I apologize profusely.
Velociraptor Attack Number Four:

Dad was a proud member of the "Red Warriors, Alpha" 66-67

A snow and ice storm hit the little town of Lakewood, WA, on the day we were supposed to have graveside services for dad, with full military honors.  (You see dad was a strapping example of a United States Military Veteran.)  He was, and is "Our Hero".  I remember the day he came home from Vietnam, Michael and I glued to a window at SeaTac airport to see our father again.  It is a day I will remember always.  What a joyous day, a hero had come home, but back to my blog ....it was the worst ice storm in 15 years here.  I must admit from the inside looking out it was beautiful at first - all the branches encased in ice, but if you ventured outside you  knew the area was in deep trouble.  Just stood there and listened as branches, limbs and even trees were popping and cracking - it was a winterland symphony, that would soon turn into utter chaos.   And it didn't take long - everything was shut down, including the bases and forts in the area.  Dad was being interred next to mom at the Ft. Lewis Pioneer Cemetery, with mom's grandfather near.  They had always known they would be there someday and they loved the spot.  Number four attack was that we couldn't get him buried.  First it was Friday - too dangerous, then Monday - turned out also too dangerous, then Tuesday - my son and I walked outside, looked to the sky, and I said, "OK Dad, we know you didn't want any pomp and circumstance - but damn it, you deserve it - so lighten up on the weather just a little, please....and it happened.  Thank you so much, to Mortuary Services at the Fort for taking such good care of us, and ensuring that our folks wishes were answered perfectly. Time to maybe breathe now................Nope.
Velociraptor Attack Number Five: 
Seems trivial, but the same day that dad died my beautiful Yorkshire Terrier, that I had had for 12 years, passed away also.  We had to leave him in Idaho when we were lifeflighted away and our children were taking care of him.  Toby was attached to my right hip and I miss him horribly.

Velociraptor Attack Number Six:
While we were in our fog we ate, drank and did whatever we could, when we could.....so we came out of the fog....and Joe had put 20 pounds back on.....OH SHIT SEYMOUR.........Yep, the salt and fat does not give you a break when your grieving...it comes, and brings friends.  So now we've gone from our beautiful 1B status in Salt Lake - had to go through a very frustrating new batch of tests for U of W - and come out unlisted until he gets the weight down and is less edemic (retaining fluids)?   Once again, understand, but doesn't make it less mind boggling.  Back in the world of up and down INR numbers - getting used to another climate change and the sinus problems that go along with that and being away from our house and bulk of our family, once again.  So when we land on the other side of this - and analyze it - we'll have known that it was a gamble coming up here - but never in a million years thought we'd go through the loss that we have and the hoops we've had to jump through. 

So now it's time to get together a set of tools to get through the velociraptor attacks and blog them.  When I come up for air, I'll try to do that - so it'll be easier on others who get attacked by those nasty little velociraptors. 

Even one unexpected happening can uproot your life totally and throw LVAD Warriors into a tailspin, I have no idea why we had so very many all at once.  But I will say, that once again we have survived storm after storm and will continue to do so.  I just hope the powers that be see fit to leave us be - for just a little while.

Here's to better times Warriors - Cheers

This chapter is dedicated to Bob and Ruth Crouch

When everything aligns to make one big disaster for you - it can still work out

In our world of LVADness we talk often of the "roller coaster" ride.  I had been so caught up in the LVAD ride that sometimes I forget about the "normal" stuff that can fell a family just keeps going, despite your need to have it wait until it is "more convenient".  JUST DON'T WORK THAT WAY FOLKS!!!!  It can creep up and bite you in the rear quicker than you can say "Jack Rabbit".  I wish I could tell you that this is one of those chapters that gives you the tools to cope with a situation like this - but it's not.

These last two weeks have been a mind-blower for me.  We are still stuck in our "alien" world of Salt Lake City, and things had been going along swimmingly (except that the elusive transplant had still been evading us).  We knew my precious mother had torn her rotator cuff when she fell on her back porch (she is fast approaching 80) and we couldn't be there for the surgery.  We have always been there for my folks (sometimes I think they love Joe more than me :) ).  Any, and every time they have had a bump in their road we have been able to pack up and drive from Nampa to Tacoma and stay with them until their crisis had been diverted, or just to visit ....just because.  But not this time.  It was really tearing us both apart.  Joe had asked his team here if it would be okay for him to be alone for a week so I could go up to Washington...but they said, "No".  That was a hard pill for both of us to swallow.  

Luckily my sister-in-law, Debi, could make the trip and be there to help.  The surgery went fine - but then things started going sour.  Debi had gotten mom to the restroom and they were heading back to her recliner, in the living room, when mom just went "dead weight".  Poor Debi, there was nothing she could do but yell for my father (who has a crippled right leg).  They got her safely to the hall floor and called 911.  Mom is tall but as skinny as a rail so I can only imagine how the two of them got her down safely, must have been a bear.  The nice firemen got there and put a sheet under mom and got her into bed.....and then dad lit up the phone lines to every medico he could think of to get some help.  The next morning one of those nice firemen carried mom to the car and Debi and dad took her to a rehabilitation center.  

She was not doing well.  Not eating, not sleeping, angry at the world, sad.  Since mom was in the rehab home Debi went back to her home in PA.  Then I got another phone call from one of our kids who needed immediate help in Portland.  Needless to say I was on the first plane out, took care of his needs then drove up the I5 corridor to my mom.  (I refused to be three hours from her and not see her) I just showed up in her room.  At first she didn't recognize me, but it didn't take her long.  I think she thought she was dreaming.  I forgot to mention that my daughter in law and grandson were heading to SLC for a visit - so Joe was not alone....everything worked out in my favor so I could finally see my mom, after a very, very long year. 

I had to pull out every bit of emotional acting, that I had inside, not to completely fall apart when I walked in that room.  Needless to say, my Pops was almost as angry at me as I have ever seen - but he was mad because I hadn't told him I was coming.  I'm still apologizing.  I think he thought that I didn't trust him to take care of her - the love of his life - and that couldn't be further from the truth - I trust him implicitly - He got less mad at me as we went along.  It was really so good to see him. 

I only had about 48 hours with her - but it was a great and much needed 48 hours.  I'm also pleased to report that she made a total turnaround and today, Friday, she is home - back in her recliner and enjoying every moment of being there.  Her shoulder still aches - but the other stuff, the sad stuff is pretty much gone.

In this rehabilitation home that my mom had to be in, is a woman who works there - she happens to be a shirttail (very shirttail) relation to me, in a much skewed roundabout way.  She told my 14 year old granddaughter that my mom was depressed because her children are not there, and she is our only mother and we should be there.  My granddaughter explained, once again, where her Grandma Jenny and Grandpa Joe are - and why they are there....My brother is the Vice President of a very large company and is headquartered in PA, myself...well if you've read my blog or know of me personally know my predicament at this particular time in my life...my husband and I are waiting for a much needed heart transplant in Salt Lake City.  At first, after hearing this,  I laughed, because I couldn't believe that someone could be so cruel as to say something like that - but then the emotional ax fell and I just wanted to cry....because this woman has no idea what I have been through in this past year doing my damnedest to keep my beloved husband alive.  This woman also stated that my mother should be my choice..."she could get a new husband".  I have not made a choice between my mother and my husband, I never could...the movie "Sophie's Choice" came to mind and I ended up devastated that night - all because of one awful woman.  I picked myself back up again and pulled from that pluck that I have always been able to pull from, and got myself back to the home in the morning.  I bought my mom a white board and wrote on it:  "Goal:  Get better, Jenny needs you", then I spent a few more hours with her - told her how very much I love her and miss her - hugged her goodbye and got back in my rental car and took myself back to the airport, and got on the plane that took me back to my husband so we could wait for that heart - together.

In this very long saga of Joe and Jenny Smith we are going to get bumps in the road - Holy heck - how many have we made it through so far?  And every one that we get through we know we'll get through the next "big one" too.  Just one foot in front of the other - and (as my momma always says) "Just breathe". 

Other good things happened while I was away from our "lockdown" in SLC.....A friend of ours had a tumor successfully removed, another friend who had a transplant and was not doing well...is finally doing a little bit better, and there's a new LVADer in town - just a kid...but his life was saved by this marvel called an LVAD, and hopefully very soon he too will be transplanted and back on his road to "normalcy".  

So now I'm back in "lockdown".  I must admit that being set free from my cage for a few days was wonderful - but also sad for me, because I always travel with Joe (well the majority of time anyway) and I found myself talking to him while he wasn't there.  

Disclaimer:  I have never professed to be sane - so this chapter will give everyone fuel to their fire that I am one the nuttiest in the world.  Oh well, gotta love me.......

BTT - Bridge to Transplant

In Joe's case he has chosen to be a Bridge to Transplant (BTT); meaning, he currently has a Left Ventricular Assist Device (LVAD) that optimally will help him live long enough to receive a heart transplant.  Thankfully, he is well enough to make it to this target at the current time.  Our 30 days came and went without the "gift" so we live each and every day on the 1B list, wondering if today will be that day when the phone rings and they tell us "We've got a heart for you".  I wish I could tell you that this is an easy journey, it's not.  It's emotional and stressful and you do almost anything to keep your mind from wandering to transplant thoughts.  There are approximately 3,200 people per day waiting for a heart transplant.  In 2010, approximately 2,000 people were lucky enough to receive this gift of life.  We have done this chapter, as a living document, to provide information that might otherwise not be available.  If there is something in particular you would like to know and can't find it - contact us, and we will gladly find it for you within our means.


Transplant Patient Information:  has been created to help patients and their families through the process of organ transplantation and to provide the information needed to make knowledgeable healthcare decisions. (UNOS pdf file)

What Every Patient Needs to Know

Partnering with your Transplant Team:  The Patient's guide to Transplantation 

UNOS Region Information: 

There are eleven regions in the United States.  They are broken down as follows:

• Region 1: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Eastern Vermont
• Region 2: Delaware, District of Columbia, Maryland, New Jersey, Pennsylvania, West Virginia, Northern Virginia
• Region 3: Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, Puerto Rico
• Region 4: Oklahoma, Texas
• Region 5: Arizona, California, Nevada, New Mexico, Utah
• Region 6: Alaska, Hawaii, Idaho, Montana, Oregon, Washington
• Region 7: Illinois, Minnesota, North Dakota, South Dakota, Wisconsin
• Region 8: Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming
• Region 9: New York, Western Vermont
• Region 10: Indiana, Michigan, Ohio
• Region 11: Kentucky, North Carolina, South Carolina, Tennessee, Virginia

When you are listed, your heart will be coming from one of the states incorporated in the region where you are located.


UNOS's Interactive Regional Map:  from this link you can see how many transplant centers are in your region, how many transplants are done per region/state/transplant center. 


UNOS Status Categories:


There are 4 categories of heart transplant candidates with UNOS listings:


1A - Has a vad of some type, a total artificial heart, intra-aortic balloon pump or an extracorporeal membrain oxygenator.  The 1A status lasts for a 30 day timeframe. (This gets more detailed in the link below)


1B - Has a left or right ventricular assist device (LVAD/RVAD) or continuous infusion of intravenous inotropes (Dobutamine, Milrinone, Dopamine)


2 - A candidate who does not meet the criteria of a status 1A or 1B


7 - a candidate who is considered temporaily unsuitable to receive a thorasic organ transplant (weight loss issues, other health concerns)


For the complete status jargon click here.

UNOS has a wonderful website, and if you have the time you can find lots of interesting information there.  For example, the have a factsheet regarding the Theological Perspective on transplants - giving and receiving.  I learned alot on this factsheet.


Joe and I hope that our blog helps people with their journeys.  It is not always easy to find the information you so long for, and people in the medical world are sometimes not so helpful and tell you all the rosy stuff you long to hear without the reality that comes along with the packet.  Our mission through our blog has been to let people know they are not alone on this journey - We are all just like you.

Hey FATES, we're ready, let's get it on!!!!!!!!!! The Transplant Path

So, three weeks ago our heart failure clinic "flipped the switch" and designated Joe as a 1B category on the heart transplant "list".  When they "flipped the switch" they seemed to have also flipped our emotional roller coaster to the "on" mode once again. 

Joe and Jenny Smith at the VA Hospital - Hi everybody!

Things have been different since our crisis in May.  Joe has now inherited a "fear of the machine".  I can't blame him at all.  When you go through this in January and in May you get a "total equipment failure", are a hairsbreadth from death and somehow miraculously make it through once again, only to find out that you suffered some small strokes while you were comatose for weeks on end, lose the ability of your kidneys to function, miraculously get them working again....Well you can imagine your "faith in the machine" gets shaken a bit (understatement).  I don't believe that I will see the personality, that I love so much, again until after he is blessed with a transplant.

And for me, the "wingman", life has been pretty strange.  I've been pretty much left to my own wills especially in the past few weeks.  That's so different for me.  I have a family that interrupts my life constantly (just kidding) - but for the last seven months I have seen them for maybe 3 days at a time 3 times, and my parents (whom we would both do anything for) we haven't seen in almost a year.  For someone who relishes watching her grandchildren grow, visiting her parents frequently, and loving see my children do what they do this has been the hardest thing.  I have virtually "replaced" my family and friends with people who actually can understand what you're going through and cannot only sympathize but empathize.  It's not like I have control over this situation -  which is another thing that is completely foreign to me - I was always in control, master of my own fate, keeper of the flame, and now it seems my head is spinning all the time.

It's even gotten so bad that I have a bit of writer's block ... (I apologize to those who follow our blog and promise I'll get my shi# together again soon) ...  Those that know me, personally, know I am never short of words.  I feel an obligation to continue the story of our time and to continue to educate this society of LVADers and Transplanters that we have all formed as to what the "techys" and the medical people just don't tell you.  There's so much, maybe that's why my head is spinning constantly.  Just when we get a handle on the LVAD information we have to switch gears and do the transplant research in an effort to understand everything that is happening, that will happen and what to expect for the rest of our lives, and make sure all of our ducks are in a row for in the event that we should get lucky enough to get that far.

So after I started this chapter of our blog, and I procrastinated about how to finish this chapter, we got the news Monday that Joe is now 1A on the transplant list.  The elusive 1A status - the one that everyone who is waiting for a transplant longs for, and for the next 30 days it is ours and ours alone.  Since it just barely happened it seems like a long time and then you stop and panic and think 4 days have already passed.  In the blink of an eye we will either "get the call" or pass by our 30 days and start again at 1B.  When we heard the news we just stared at each other and then I cried and couldn't stop crying.  It was such a mixture of emotions, elation at being at the top and the realization that it has only been two months since they had to open his body during the crisis and only three months before that, that they opened him up the first time to put this new and exciting medical wonder into him to save his life.  Facing another life altering surgery so soon is quite a scary endeavor.  But I have to believe that this will end up okay - that Joe will have the life that he longs for back again.  And we can begin life all over again.  That would be the ultimate "red letter day".

As I've said before we have no choice but to sit down, shut up and be ready for the ride of your life once again.

Hey FATES, we're ready, let's get it on!!!!!!!!!!

     There are approximately 3,000 people waiting for a heart transplant PER 
     DAY.  Approximately 2,000  people PER YEAR get that transplant.

I have included a few helpful links to transplant sites....I will add more as I find them.

What to expect before a transplant
What to expect during a transplant
What to expect after a transplant

The Clinic's view on transplant  (Cleveland Clinic)

To Eat or Not to Eat.........That is the Question

Different dietary limitations associated with LVADs


It seems like once you finally get the food thing down - there's something else to be added.  In our case, in the last few weeks, it's been a limited amount of phosphorus that he can have.  I'll have to admit - phosphorus - that's one I had to look up.  So just in case your team throws phosphorus limits at you - here are some suggestions.  


Foods to avoid (or limit)
Beverages: ale (and beer), chocolate drinks, cocoa, milk drinks, canned ice tea, dark cola
Dairy: cheese, cottage cheese, custard, ice cream, milk, cream soups, pudding, yogurt
Protein: carp, crayfish, beef liver, chicken liver, fish roe, organ meats, oysters, sardines
Vegetables: baked beans, black beans, chick peas, garbanzos, kidney beans, lentils,        limas,  northern beans, pork n beans, split peas, soy beans
Misc:  bran cereal,brewer's yeast, caramels,nuts, seeds, wheat germ


Phosphorus Limitations:
http://www.davita.com/recipes  (passed to me by Carol Cox Stier)


Here are a few more limitations you may run up against:


Sodium Limitations:
Low Sodium Recipes from Sparkspeople.com:  
http://recipes.sparkpeople.com/great-recipes.asp?food=sodium+free


Potassium Limitations:
Low Potassium Recipes from Sparkspeople.com:
http://recipes.sparkpeople.com/great-recipes.asp?food=low+potassium


Purine Limitations:  (Gout)
Purine is:  a white, crystalline compound, C ₅ H ₄ N ₄ , from which isderived a group of compounds including uric acid, xanthine,and caffeine.
http://www.livestrong.com/article/75259-menu-people-gout/


Leafy green vegetables and all fruits are wonderful sources of nutrients and are safe to eat for people suffering from gout; however, if you are taking coumadin - watch the greens!!!!!


This is a link for a good food calculator - includes a nutrition type label for almost all available food.  http://www.acaloriecounter.com/



I am, personally, addicted to these (available in Costco's ready to eat refrigerated section: 

(Costco) Cilantro Lime Shrimp Wrap

Nutrition Facts

1. Servings: 1

Calories	290	Sodium	640 mg
Total Fat	7 g	Potassium	0 mg
Saturated	2 g	Total Carbs	34 g
Polyunsaturated	0 g	Dietary Fiber	3 g
Monounsaturated	0 g	Sugars	2 g
Trans	0 g	Protein	22 g
Cholesterol	0 mg
Vitamin A	0%	Calcium	0%
Vitamin C	0%	Iron	0%

*Percent Daily Values are based on a 2,000 calorie diet. Your daily values may be higher or lower depending on your calorie needs.

If you have a suggestion for a site - or for recipes - please contact us.

LVAD Warriors - and how one little fish can change a demeanor!

Sometimes in your world things just happen.  There is nothing you can do about them, so why not just face the inevitable and walk on?  Brave statement, indeed; but not so easy to do. 


Realizing what might make your LVADer happy while in the hospital can be taxing.  Personally, I finally remembered that Joe loves fish - not to eat, to watch - so I finally got smart and went and bought him a little beta to keep him company when visitors weren't there - or as a dialogue opener for the bazillions of medical personnel who interrupt your life on a continuous basis (do they really need to weigh you at 4 in the morning?).  One of the administration nurses came up with the name VAD - how appropriate - so VAD became pretty famous on the rehab floor in the Heart/Lung Center.  


All of our LVAD families have had to drastically change their lifestyles due to this medical wonder, most (no matter what the experience) are grateful to have been handed this new lease on life.  It's a fine line you must walk to keep yourselves from being passive when it comes to what an LVAD has to offer.  Sometimes people are so lulled into this numbing experience that they are almost afraid, or too proud, to step up and ask questions that could make a major difference in their care or peace of mind. It's okay to have an opinion, it's okay to speak up, and it's okay to disagree (if you have the facts to back you up). 


When you first come on the scene you are made to feel like everyone is part of the "team" - but sometimes you have to remind the "experts" - that your recipient and you as wingman (caregiver) - are the most important part of that "team" - without you and others willing to take a chance on this medical marvel (and it is pioneering/experimental) there would be no "their part" of this team.  


I have become a bit bolder since first coming on to the scene - and I must say that that is due to my own conscious and upbringing but also because of some pioneering women, who have come before me, that have stood up and are counted. 


Since, the LVAD "explosion" - communication has gotten so much better between people who are involved with an LVAD world.  There will be those who are "versed" in Thoratec, who I loving call "Thoratechys" they are soldiers who want the world to know what a perfect thing this can be and won't utter a negative word about things that happen, and there are those that I call "Warriors" who touch reality and try to make changes while still being grateful for theirs or their loved ones lives.  


There will be those who will say, "I did it with no pain medications after the first or second day", and those who can't do it like that - we all carry our pain differently and some have great inner strength (or they're just plain crazy :) ) but remember that it doesn't make them better than anyone else - just makes them different.  Nothing that helps you recover - your way - should make you feel less than anyone else or ashamed of how you did it.  This goes for caregivers (wingmen) also.  Everyone handles stress differently, and, quite frankly, I don't know how any of us makes it through without a trip to the local funny farm for ice baths and frontal lobotomies.  


In the LVAD world we are all the same, either we carry an extra piece of machinery around to keep us walking, talking and loving - OR - we care for those who are walking around with that extra piece of machinery.  I say, "Cheers to us all".  We are mighty, we are powerful, we are at times sobbing pieces of sponge - but we are all one of the ultimate survival stories.  

For our LVAD Warriors we are providing bands that portray us "LVAD Warriors"... to get yours send an email to tootsgran@gmail.com        If you can, a dollar donation would be appreciated, if you can't you will still get your bracelets.  

Let's Talk About Your "Wingman"

Being the recipient of an LVAD is not the only way to go through life, with the emotional challenges (as well as physical) thrust upon us in such a hurried manner.  As primary caregivers you will experience, first-hand, every ounce of those challenges as closely as the recipient themselves.  Sometimes your challenges will be greater than their's, because you not only have to worry about doing the right thing for the recipient but also the right thing for your families and yourselves.  The major obstacle is to figure out how you (the caregiver) are going to overcome, adapt and improvise (to borrow a phrase from the Marine Corps and Clint Eastwood (Heartbreak Ridge, 1986)).

Big Bang Theory's "Wingman" clip

I would not be presumptuous enough to begin to give you an "instruction book" on how to be a "wingman".  I have no degree in psychology, family counseling or any other credentials that would make me worthy to do so, and my On the Job Training (OJT) is in it's infant stages.  Besides those particular facts, everybody's experiences and personalities are different and as individual as snowflakes.  How can I possibly tell you how to hang onto your own identity when sometimes I feel like I have lost my own?

Here seems to be the top 3 fears we wingmen have the most:
 1.  Feeling trapped and having an inability to sleep because you are concerned about your "ward".
 2.  The fear of doing just one little thing "wrong" and make healing/recovery harder (or impossible) for our "charge".
  3. Scared to death you will not know "how to intervene" should something "malfunction", no matter how much training you've gone through.

To the people that did this study I say, "DUH!!!!!!!!!!!"  I'm wondering how much that study cost them? (Findings from:  Cardiac Assist Devices, Daniel J. Goldstein, Mehmet Oz.  Chapter 14:  Quality of Life Issues Associated with the Use of Left Ventricular Assist Devices, Peter A. Shapiro, M.D.)

What I have learned from fellow "wingmen" and recipients is that everyone's experiences are different and, interestingly, everyone's geographic location holds different "bags of tricks".  Some change dressings daily, and some every 4 days - and not everyone uses the same equipment, not only for dressing changes but for daily use.  Recommendations from clinics are as different as there are days in a month.

The most major point of this blog chapter is that since our journey's beginning, the cyberspace LVAD world has grown rapidly, and connecting to all of these fantastic resources is a major goal of ours.  If you deal with LVAD (in any way shape or form), or have in the past, help us all out by contacting us - and giving us your "wealth of knowledge".

On May 3, 2011 the Veterans put out the following press release, announcing that they will start paying caregivers, even if they are immediate family:

VA to Take Applications for New Family Caregiver Program

VA Implementing Enhancements to Existing Services

for Veterans and Their Caregivers

Although this applies to post-911 caregivers, I'm hoping that they will recognize the rest of also.  I have attached the link to the letter here:  http://www.va.gov/opa/pressrel/pressrelease.cfm?id=2088

To all the LVAD Warriors out there - Have a great day!!!!!!