My introduction and major question
Tue, 07/02/2019 - 12:01PMHi, I'm a 35 y/o caregiver to my dad with heart failure. The hospital LVAD educator suggested I speak with the people on here for more information from people who have actually been there.
Up until recently, my father has an EF around 10%, does not use oxygen, can walk short distances, and can practice self-care for the most part. I serve as physical, emotional, and supplemental support for his "bad days." He lives with me full-time and I care for him.
He has had CHF since 2004/2005, a complication of a "blowout" between his ventricles as the result of a congenital heart defect that didn't repair due to rheumatic fever. The septal defect was patched in 2014, and he had a pacemaker installed in 2015. He's come to near-death about 5-6 times since 2011, but has always recovered. At one point he was re-classed to Class 3 from NYCHA Class 4 status. He's always responded incredibly well to cardiac and pulmonary rehabilitation. Physically, he looks like your average guy in his early 60's and people are usually shocked to find out he's so ill.
Sadly, he's not bouncing back as quickly, and he's currently on his 4th week of hospitalization, and this is his 5th hospitalization since December 2018. His cardiologist had him transferred to another hospital that performs LVAD surgery and heart transplants a few days ago. Mentally and emotionally, he's still 100% with the world, has an incredibly strong desire to survive, and he's very dissatisfied with how his physical body is failing him.
He is strongly considering the LVAD. However, I won't lie, he was horrified when he held the LVAD impellers in his hands yesterday. He wanted to know, from someone who has an LVAD -- how does it feel having that big heavy pump in your chest? Do you have trouble sleeping with it, or do you physically feel the pump weighing you down? After his pacemaker/ICD he really struggled with getting used to that pocket of electronic components in his chest, but then he adjusted. He looks forward to getting a good idea of what to expect. I appreciate your responses, and thank you so much.
Was also not sure about LVAD implantation
Wed, 03/18/2020 - 8:56AMHi Laura,
I'm a 59 year old female who is 5'6" tall. I've had my LVAD since January of 2019 so compared to some here, I'm a "newbie". My device may be a bridge to transplant but I have a very reactive immune system. A transplant could take 5 years or may never happen at all. I am a 4 on the list currently.
I was diagnosed in 2011 with a non-ishchemic, idiopathic dialated cardiomyopethy. They think my heart was damaged by a virus or bacteria. I had a pacemaker almost right away then a biventricular pacer with icd in 2015. I lived fairly normally for about 5 years, then began to experience hf symptoms. By December of 2018 I could not walk the length of my house without extreme shortness of breath. I was in cardiogenic shock. My heart could no longer sustain my life. I was in kidney and liver failure. My ef was 10.
The decision to have the device implanted was difficult. I have great faith in God and was wondering if I was missing my "off ramp". Was I "supposed" to leave now? I spoke with palliative care so I could understand the death process. My family was so worried and so sad that I decided I did not want them to endure my loss without at least trying this, but make no mistake, the idea of this was horrifying to me.
I had an external pump attached to my right leg for a week or so while waiting for the surgery. On January 4th 2019 my device was implanted. (I'm going to tell you my whole story with complications).
During my surgery to implant the Heartmate 3 device I experienced edema so my chest was left open for 3 days. This was traumatizing for my family but I do not remember anything except hearing their voices twice and trying to speak to let them know that I was fine. When they woke me on the 4th day, my chest was closed but I was so deconditioned that I could only move my fingers and toes. Within 2 days PT was in there getting me up on my feet. I had to learn to walk again. I had two terrible systemic infections and bleeds in my duodenum that eventually were cauterized. I was hospitalized from December 21st 2018 until March 29, 2019. I currently have left and right heart failure and a bad mitral valve that might eventually need a clip. My ef is still 15 but I feel much better.
My husband does all dressing changes. He is a generator technician and does a fantastic job! I've never had an infection from dressing errors.
The last and most sustained complication was a rare reaction to hydralazine. I had suspected medication induced lupus symptoms. I had shortness of breath, muscle pain, weakness and cramping and great difficulty sleeping. Dont get me wrong, I was still "doing" as much as I could but that syndrome was a real struggle. Since changing my BP med, life has improved dramatically! I'm able to walk a mile. Sleep well and I feel like "myself" again! That was only 3 weeks ago.
My experience is not typical. Some leave the hospital in a couple of weeks and have few complications. Many return to work full time. I did until my position was reorganized out last September.
Tell your dad that you get used to living with the device. I notice it. Not the weight, but the sound. I notice and am annoyed by the batteries knocking things over when I'm moving around but that is something Im adjusting to. The upsides have been many!!! I've seen one more birthday and holidays with every one of my kids and grandkids and my terrific husband. I go shopping and do field trips with the grands. We went on a family vacation last august with my family, siblings and their kids to my favorite beach in Maine. It was a blast.
I'll tell you one anecdote of many that I've experienced. My grand children were at first afraid but eventually started asking questions. My then 4 year old granddaughter asked me about my scar and batteries. I explained that I had a machine running my heart. I asked, "do you know how your mommy and daddy's and your hearts sound"? She replied, "yes, bump bump, bump bump". I told her that mine sounded different now and told her she could listen by putting her head on my chest. She did. Listened, then backed up, looked at me and said, "so...you're a robot". LOL. I told her yes. I guess that part of me is. 😁.
The long and short of it is in my case it has been worth it. I feel much better now and am functioning well. I miss swimming and don't like the process for showering but it is not the worst thing in the world. I miss the freedom of moving without the equipment a little but adore that I can move around well and live my life. I'm not embarased by the cables and batteries and will explain it to anyone who asks. I tell them, "...you just met a cyborg! Didn"t expect that today did you"?! 😁. In longer interactions I have them feel for a pulse in my wrist...there isnt one because it is continuous flow. It is kind of a medical miracle that with this device I'm here to write this to you. Life has far more pluses than the things that I went through to get here.
Your dad sounds like he loved to live his life before the chf symptoms and the thing is, he can have most of the good part back. It may come with challenges but for me it has been well worth it. When I feel sorry for myself I look around me and understand that some people get a much worse deck of cards dealt to them; A 30 year old who gets ALS, Parents who lose children to cancer or disasters, people who live their whole lives in a single room with a dirt floor, children experiencing war. The world is full of struggles. Mine, compared to many is not that tough at all. I've met so many wonderful people who helped me cheerfully and with great kindness and patience. That part and the struggle they helped me though made me a better, stronger person. I appreciate that I've met them and if I had not gone through this, I would not have met them.
I have vacationed. I have not gone on an aircraft yet but assume I'll now get early boarding and get to take all equipment into the cabin with me.
If I had to do it over again even knowing of the challenges and struggles, I would.
I send my prayers and best wishes to you and your dad.
Kind regards,
Hope
I felt the same way when…
Wed, 03/18/2020 - 9:09AMI felt the same way when they introduced me to the LVAD during my 6th time in the hospital in a 5-month period. I was totally overwhelmed by the information, as was my wife. We hadn't even heard of such a thing as an option before. I had lived with ischemic heart failure from exposure to Agent Orange for ten years, deteriorating to the point where I would get breathless from getting up from the bed at night to make it to the bathroom. We discussed the possibility of the LVAD after our introduction to it, but my decision was easy when hospice was my alternative. My LVAD is a "destination" device. Your dad's might be a "bridge" to help him until a replacement heart becomes available. I'm not eligible for a new heart because I am too old and ugly, but my LVAD has given me the pleasure of seeing my grandson graduated from high school, two nieces getting married, and getting back to my favorite activity--cruising. I have kept up my workouts from my rehab after the implant (2 years ago) and walk like I used to 20 years ago. I hope the best for your dad! Your caregiver's job is not an easy one either, and my heart goes out to you (see what I did there?). Bless you and all the caregivers out there for your selfless acts of love.