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!!!!!!

Ummmm Hello Higher Powers - We're Still Here and I Can't Begin to Thank You

I cannot possibly begin to explain the comings and goings of the last 6 weeks.  It seems so impossible to me that it has been so long since the mind numbing, world collapsing times of May. 

By the grace of whatever powers of the Universe my husband and I are still a couple.  Absolutely freaking amazing.  To defy all the odds, to stay one step ahead of complete disaster, fate....I just cannot tell you what a feeling that is.  

Joe, thankfully does not remember anything past being in the parking lot on our way in to the Heart Failure Clinic, here in Salt Lake City on May 10th.  I have always told the clinic that they needed to change their name, because it sounded so "fatalistic", but that day we were the epitome of that name.  Joe's wonderful, life-saving HeartMate II had failed us, failed our family, failed the doctors, had failed the staff, had failed our friends.  I heard phrases like "unprecedented", and thought words like "why us"? 

I have kept my blog going with facts, figures and pictures that hopefully will help LVAD families, because it was the only thing I could think of to do.  And now, here it is 6 weeks later and I am finally climbing out of my fog - one rung at a time. 

Last weekend our youngest daughter and her friends came to visit and this weekend (Father's Day weekend) our middle son, daughter-in-law and 5 month old grandson graced us with their presence.  Seeing them has afforded me the opportunity to start my climb back.  It made me realize that Joe and I still have a life other than the one we have been forced to occupy in the last six weeks.

You know how people talk about how "your stars align" when good things happen?  Well, I've been thinking about that a lot lately.  I think how if just one breath, one step, one anything had happened differently, I would not have the opportunity to be writing this particular blog chapter.  The fact that we decided that staying close to the hospital was the "right thing to do", which put us only 5 minutes away when our crisis began, the fact that Dr. C happened to be here in the hospital and could start operating on Joe, because Dr. R was already in surgery saving another patient, the fact that that particular day when we walked in, that (the other) Dr. R. and the rest of the staff in the clinic, although they had never seen "hemolysis" (red blood cells bursting) knew exactly what was happening - everything, absolutely everything went as perfectly as it possibly could, the fact that Dr. C. stayed in the OR when Dr. R. finally was able to get there (having two top notch cardiac genius surgeons working together), the two of them working so carefully and diligently to get that humongous blood clot (the size of an Italian sausage) out without letting any of it break off and travel somewhere that could have killed Joe.  I could go on and on - but you get the gist, "our stars were aligned".  

So instead of going through anymore of the horror story - let's concentrate on the miracle of our ordeal.  Because of the hemolysis, Joe's kidneys went on a "vacation" - it could have been a permanent vacation - but 6 weeks later they're back in working condition.  The miracles just keep on coming.  He suffered a few strokes during the crisis - but they were not debilitating - just minor inconveniences - lost some hearing, a bit of weakness in the right arm, worries about aspirating and not knowing it kept him on tube feedings for 5 weeks - but we're back to food again.  Are you amazed yet?  I certainly am. 

So now we work on getting a bit stronger and then, hopefully, we get back on that road to transplant.  

So what is our LVAD lesson here (?), because we are all for letting our experiences help the other LVAD families of the world - Never, ever, ever give up hope.  AND to the LVAD pioneers that have come and gone before us - thank you so much for getting us to where we are today.

Three more observations:  First, sometimes people that received LVADs check out for a while, in our case they had Joe in a medically induced coma for a few weeks, and they can have some very scary things happen inside their subconscious - Joe relayed to me, just this last week, that while he was in his head having these "scary times" he could hear my voice telling him that "every thing's ok", "I'm right here", "Don't worry - We got this" - "I love you".  He said it's what he held onto and that I kept bringing him back from his hallucinations - so remember - THEY CAN HEAR YOU - talk to them.

And second, these were times that I have no idea how I, personally, made it through sane.  Through the toughest times of this, besides my immediate family and a few lifelong friends, I had the support and love of fellow LVAD "Caregivers" that I have met through Facebook.  These ladies, "my ladies", are not even close to my geographic location but they got me through - they were tireless, amazing and the most awesome people in the world - so to Jamie, Tracy, Lisa and Rebecca - my lifelong love and allegiance.  My advice to others - use us, use others, make those networks that will keep you going. 

And third, to Joe, my Joe, you are an amazing human being - thank you for picking me to live your life with, and thank you for fighting so hard to come back to me.

Batteries - the "What to Know" - The LVAD word

 What to Know about your Batteries:

1. Only use Thoratec's PBU to charge HeartMate batteries. Other battery chargers may
2. damage the batteries.
3. * Do not use batteries below 150 F (-10o C) or above 1050 F (40'C) or they may fail
4. suddenly. If batteries are below room temperature (68-720 F, 20-230C) during use, their capacity will be reduced. At the low end of the temperature range (I150 F, -10WC), run time will be reduced by 50%.
5. The batteries should be routinely replaced, approximately every six months, or if operating time is reduced to two hours.

To prevent deterioration or damage to batteries:

1. Do not drop or subject batteries to strong physical shock. Dropped batteries should be replaced.
2. Do not leave or store batteries in hot or cold areas (car trunks, etc.) or battery life will be shortened.
3. Do not directly connect the negative and positive battery terminals.
4. Do not use expired or defective batteries. Use of expired or defective batteries may result in reduced operating time or abrupt loss of LVAD function.
5. Recharge used batteries within 12 hours or battery life will be shortened.
6. Use of expired or defective batteries may result in reduced operating time or abrupt loss of LVAD function.

Stuff to know for LVADers and LVADees

Emergency bag

 

has to be with you "at all times" - ours contains the following:

1.  Emergency procedures card

2.  Stethoscope 

3.  Extra controller

4.  Two batteries at their fullest charge

5.  Latest medications list

6.  Extra little round battery for the controller itself.

7.  Transplant Pager (attached to strap)

Dressing Changing

In the Intermountain Medical Center Heart/Lung unit they recommend changing the bandage once every three days.  Places vary, geographically, on the type of products they use and recommended times for changing

1.  2 face masks

2.  2 hair covers

3.  exam gloves for set up

4.  sterile gloves

5.  3 packages (2 each) Kendall Q-tips (sterile)

6.  1 package (10 sponges) 4 x 4 12 ply (sterile) Accu-Sorb

7.  1 Tegaderm Foam Adhesive

8.  1 sterile 10 ml syringe

9.  2 Power sterile cups 90 ml (1 for chlorhexidine - 1 for sterile water

10. 2 or 3 Tegaderm Film

11. 1 3M Cavilon No Sting Barrier Film (lollipop)

LVAD Fact Sheet
http://www.thoratec.com/downloads/LVAD-FactSheet.pdf

Original FDA approval letter for the HeartMate II 
http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/DeviceApprovalsandClearances/Recently-ApprovedDevices/ucm074231.htm 

Heartmate II - Instructions for Use - pdf file (113 pages)

http://www.accessdata.fda.gov/cdrh_docs/pdf6/P060040c.pdf

Considering Traveling - Check Out Where There ARE LVAD Centers:  (Ever heard of a country named "Reunion" - just kind of interesting looking at it - 2500 sq miles - but has an LVAD Center)
http://www.thoratec.com/patients-caregivers/find-a-center.aspx

Other LVAD blogs:

Tracy Riepl:  http://livingwithanlvad.blogspot.com/2011/06/celebrate-life-donate-blood-rock-on.html


Jamie Burns Pejo:  http://heartslvadsandlifeohmy.blogspot.com/2011/06/welcome-back.html


Michael-Joshua Morris (aka LVADone):  http://fromthebottomofmylvad.blogspot.com

Mac Sinclair: (sorry to report that Mac has passed away, but he pioneered the way for the rest of us - We miss you Mac)  http://heartmateii.blogspot.com/2011/03/tough-times-at-shands.html


The Bruns Family:  http://brunsfamilyfun.blogspot.com/2011/04/easter-2011.html


Monica McFarlan:  http://monicasheart.blogspot.com/2011/06/brighton-my-day.html


Karl Heinz (in German):  http://www.eichler-ac.de/

If you have a blog that isn't listed here - please let me know so I can add yours to this list, and follow your story.

News stories to read and place to go for assistance

Articles

http://sports.espn.go.com/espn/eticket/story?page=rayofhope

Places for help:

National Transplant Assistance Fund & Catastrophic Injury Program: http://www.facebook.com/pages/National-Transplant-Assistance-Fund-Catastrophic-Injury-Program/119386512438

Lotsa Helping Hands

https://www.lotsahelpinghands.com/

Support Groups across the Nation

http://www.transplantliving.org/Community/supportGroupListing.aspx

NPR story on VADs
http://www.npr.org/2011/06/13/137029208/heart-with-no-beat-offers-hope-of-new-lease-on-life?sc=fb&cc=fp