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Carla S. Prospective Patient

When is it time ?

Mon, 02/25/2019 - 12:09PM

Hello everyone.      I am just now beginning to discuss the option on an LVAD with my cardiologist.     I have had Dilated Cardiomyopathy for 15 years.     Life was a breeze, cruising along at 35% EF, up from 20% at dx.      However, the last year has been tough.     My EF is now back to 20% and I've been hospitalized twice due to fluid overload.    I am now 50 years old.    I am pleasantly plump and about 25 lbs out from being in the transplant "range" so I have had the option of the LVAD tossed my way.   My cardiologist warns me that I am on a "razors edge" and that I could spiral down quickly when the time comes.   Most days, I feel good.    But, I have to admit, there is rarely a day now that goes by that I feel like me old self, and that I don't recognize that I have issues.      Simple things take longer to do, I feel like I can't concentrate.      And, the puffiness in my middle is a constant that I have to always battle.

How did you know it was time for the LVAD ?       The anxiety for me is overwhelming, and I think it only complicates the situation.

303 reads
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Alena A.

Mon, 03/04/2019 - 11:40AM

if the Dr has brought up the conversation start exploring now.  My husband waited and by the time they started all the tests to see if he was strong enough to get the LVAD his right side of his heart was too weak.  It takes time before you are actually approved for the procedure due to the tests.  Your cardiac team will walk you through the process and make it more comfortable.  Important thing is to listen to their advice.   Positive thoughts!!!!!

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Brian F.

Mon, 03/04/2019 - 11:55AM

Dear Carla S.

Your experience sounds much like mine.  I was breezing along at 35 EF as well and life was grand.  My first hospital visit I was down to 17 and another visit followed both due to water issues.  The final visit I was told by my cardiologist I should be awaiting transplant.  I was discharged from the hospital and I continued with my normal routine.  Everything was difficult and I was feeling poorly and ended up in the ER.  One look at me and I was admitted within hours.  I was then given the option of the LVAD as a bridge to transplant, an overwhelming amount of information followed.  I felt so poorly I was contemplating going home and bidding farewell to family and friends.  The LVAD team was so supportive and only wanted to help me feel better.  I made the decision to go ahead with the surgery but the LVAD process takes time.  I was administered an IV drug that kept me feeling good while all the tests took place (2 weeks).  Once it was determined I was a good candidate the surgery took place quickly.  It was an adjustment but i returned to my pre-LVAD life fairly quickly.  I too had excess weight that was more easily moderated with the LVAD.  Rehab was very helpful in recovery and helped me return to a normal life.  I was once again back to my old life, enjoying outings with my family, taking short hikes through the mountains, I even returned to playing golf.  I would recommend you do this sooner than later as the decline can occur so fast it will take you by surprise and may not leave you the time necessary.  I hope all is well with you.

 

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Art S.

Mon, 03/04/2019 - 1:19PM

Hi Carla,

You’re facing a life changing situation and the same question most of us face when told about the LVAD option. Personally,  I don’t think anyone can tell you what you should do. You and your family, in consultation with your medical professionals, have to make the decision about if and when to get an LVAD. In order to do that, you need to consider all the facts and possible outcomes.  You’ll find anyone who responds to your post will have a story to tell. What’s positive, what’s negative. What went right, what went wrong. Ultimately, you have to make the decision that’s right for you and your situation.  Having gone though this myself, I understand your anxiety and apprehension.

As you think through the options and timing consider a few things:

  • Odds are pretty good you’re not going to wake up one morning and your heart will be functioning normally.  The question is what are you going to do about it and when. Procrastination in making a decision can be problematic depending on your personal situation. Wait too long and you’ll find the decision may be out of your hands.
  • Having an LVAD is life changing. As you’ve been told, it works both as a bridge to transplant and as a destination therapy. If you read the literature and statistical analysis you’ll see they work and can work extremely well. They extend life and in some cases they work better than transplant.  As you can see by posts on this site, people go back to work, travel, feel a lot better and lead happy lives.
  • Some people have more health issues than others - pre and post implant. Talk to people who have LVAD’s and you’ll find the array of those ups and downs. These are all things to consider as you make your decision and it’s timing.
  • I believe the better your health is pre-implant the better the outcome. Exercise and diet improves post surgery outcomes. Keeping up heart healthy habits post implant is essential to a better long-term outcome. If you’re thinking the LVAD will be a bridge to transplant then keeping yourself as fit as possible is recommended.
  • An LVAD will change they way you live. Things you never thought about will become everyday necessities. Being “plugged-in” 24 hours a day. Sterile bandage changes, blood thinners, constant and ongoing medical tests, side effects, infections, possible hospital stays, etc. are all part of post LVAD living. You’ll get used to it but it’s a big change.
  • If you’re thinking this will be a bridge to transplant - keep in mind there are lots of issues with that as well. But we can talk about that at a later time…

Just to give you some insight, I had CHF, then a mitral heart valve implant, then an implanted defibrillator, then an LVAD for 39 months and received a transplant over 2 years ago.

I wish you all the best with your heath and decision.

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Cindy R.

Thu, 03/07/2019 - 11:14AM
Hello Carla, I was told the same thing when they first treated me with amicor through a pic line. I didn't know it was time until my heart failed, and that is what made the decision for an LVAD to be implanted immediately. After hearing how others stressed about the upcoming surgery, I realize that I was lucky that it was just done, as I can be a worrier. I was put on the transplant list immediately, this is after 2 open heart surgeries to save my life. I did not think too much about it for awhile. When I realized that right heart caths had to be done to me in order to keep me on the list, I did some serious thinking. I was 49 at the time, had a wonderful life, and decided that any heart should go to someone younger, with young kids. I have been destination ever since, and am going on my 9th year of life after heart failure. I am very grateful for the lvad, which is a wonderful tool to extend your life, but there are some things that MUST be done, no ifs, ands or buts. Your dressing needs to be changed. I used to change it daily, but now change it every other day. NEVER put off a cleaning, never scratch at the area. Infection will be your biggest enemy, and you cannot let down your guard at all. When you are sick in the hospital with an infection due to delayed dressing changes and scratching, one quickly realizes the mistakes, and the easy cure for them. Please don't go through what I did. Your second biggest enemy will be your INR because you will need to be put on coumadin. Show up for each and every appointment, and pay attention to what you eat and drink. Life is not always easy, but if you get an LVAD, please do not forget about infection. Wishing you much luck! Cindy J. Ruth
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Debra W.

Sun, 03/10/2019 - 9:06PM

Hello, my husband age 72 will have surgery this Tuesday to implant LVAD III. I heard sometimes surgery can be performed through a rib space rather than cracking the sternum but his surgeon said he prefers opening the chest. Does anyone know about this? Maybe his surgeon is not trained in the rib placement but he has been doing this type of surgery for many years. Maybe it depends on the persons size?? Husband is 5'10", 165 lbs. Thank You!!

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june B.

Mon, 03/18/2019 - 9:13PM

Hi Carla,

I am 70 years old and have had an LVAD since November 6, 2017. Prior to the decision, I was on a milrinone IV for months. My cardiologist wanted me to go on the heart transplant list. To do this I had to go through a multitude of tests and eventually was accepted. To be listed as a 1A on the transplant list, I spent 3 months in the hospital. It was a long 3 months and my heart began to deteriorate and I was given the option of the LVAD. I really didn't want to go that route, but I had no choice. I prayed about it and God sent 4 different people to my room on the same day, including the surgeon who had not stepped in my room in 3 months so I knew this was the choice for me. I also wanted to be alive to see my young grandsons grow up. I have not regretted my decision at all. If the doctors say it's time believe them. I trusted my doctors and was totally comfortable with my decision. It's been almost a year and a half and I am doing so well.

Blessings to you Carla. I pray you make the right decision.

June B.

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Mark H.

Tue, 03/19/2019 - 2:05AM

Hi. My name is mark. I have had my lvad since Dec. 2017. I haven’t had any complications with it. But did have my defibrillator short out and had to be replaced. 

I was going down hill rapidly before the LVAD and didn’t have any other choise if I planed on living another month. Recovery was slow. Be patient. It wasn’t an over night improvement like I thought it would be. 

I wouldn’t put the surgery off at all. I wish I would have gotten mine long before I did. The last 6 months before LVAD was the worst time in my life. Please don’t let yourself get as bad as I was. I had a rash from head to toe. I didn’t have the strength to hardly get myself off the ground if I fell. I had such bad water retention that I was in serious pain. I was only getting about 1 hour of sleep a night. I truly felt like I was cursed to die a horrible death. Not to mention my other body organs were starting to shutdown.

good luck keep us posted.