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Cat S. Caregiver

Where are the recent posts, I am scared!!

Hi, hello, good afternoon! My husband is jumping through the hoops to get qualified for the Heartmate II. We're just about done and meeting with the LVAD surgeon in just a week. I don't see many recent posts and it concerns me dearly. My husband is not a bridge to transplant due to his age (73) and it seems that many of the older posts that I have read talks about all the complications and in some instances (death) rather than the situations where the LVAD has given the recipient a quality of life and it's been beneficial. Is there anyone that can share with me something good that has resulted in the LVAD surgery? I am scared!
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Michael H.

I had my LVAD implant done on Jan 9, 2018 & have been home 2 months. While the experience is not without challenges, I would not hesitate to do it again. I feel so much better with everyday & my wife & I feel optimistic about the future for the first time in a long time. If you have specific questions I am happy to try & help. I usually only check this site once a week but I'll check back sooner if you have questions. Mike Horton
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In reply to by Michael H.

Cat S.

Hi Mike, Thanks so much for the reply. How has your recovery gone? Have you had many driveline infections? Have you had to be readmitted to the hospital? Are you up and about now? Have you been able to resume any hobbies that you had before? Oh dear, so many questions! ☺ The LVAD team has told us that we'd be meeting some of the recipients but we have not had a chance yet. I have tried a search for support groups but I have only found anything online and my husband would like to meet up with people in person. It's a scary time for both of us and I am trying my hardest to be positive but I am truly scared to death that although the surgery may go well, the recovery ( and complications) seems a bit challenging. Thanks again for everything you can share! Cat
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In reply to by Cat S.

Henry R.

Hi Cat, We send our best to you and your husband. My husband Hank has had his LVAD for almost four years. He was very sick when he got it, at the age of 67. But he received great care at the University of Chicago, and the LVAD team has been wonderful as a source of communication and general assistance. Hank was very weak at first, but he embraced physical therapy and slowly regained his strength and weight. I was very nervous at first with the responsibilities that I had as a caregiver. I had to learn how to make a sterile dressing change, for one thing! I had to figure out where to order supplies, and lots of details that felt overwhelming. I kept taking my questions to our LVAD team. Over a short time, the details worked themselves out. I still do the dressing changes for Hank because I think it's easier to keep things sterile while he lies in bed as compared to him standing in front of a mirror changing the dressing. That's just my experience. Early on in his recovery I scheduled Hank for a sleep study. They found that he had horrible sleep apnea, and the CPAP has been very beneficial to his health, sleep, comfort and recovery. He loves his CPAP. I learned that sleep apnea can cause high blood pressure and heart failure! Hank began playing golf again six months after his surgery. He continues to play golf, drive, exercise, cook, and garden. He can do everything he did before, except he has to avoid water. He was recently in the hospital because he fell off a ladder, not because of the LVAD. (Holy Toledo!) Otherwise he has not been back in the hospital. He climbs the 85 steps into town quite often. We have traveled to Europe twice and are going again in May. We have two special suitcases to carry on board that contain all of his medical equipment. We have special tags on the cases, and markings, and take advantage of early boarding. We eat really well, lots of nutritous food, and some supplements, to keep us both strong. I recently convinced Hank to cut back on his volunteer work and to play more. I made him an LVAD vest early on, you can see our entry to order the free instructions to make the vest for your husband, it makes life a lot easier for Hank. I have learned a lot about the heart, and health, and natural things to do that help the body stay strong. For example, Hank uses his spirometer as a daily tool to keep his lungs strong and clear. I slowly gave up worrying over time. We are both very grateful for the people at the University of Chicago Medicine, who oversee Hank's care. They treat me like a colleague, they really do. It's such a help to me, as a caregiver. I appreciate how good they are to me and to Hank. The LVAD has been Hank's friend. I hope this information helps you. We wish you both wellbeing in the days ahead. Patty Richmond
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In reply to by Henry R.

Cat S.

Hi Patty, Thank you so much for the inspiration! Hubby and I sit here and say to each other, "we'll get through this" but really we're not sure how, just that we will. We're thrilled to hear that Hank is doing all these wonderful activities and also that you are traveling! Hubby's son and wife have an 8 year plan to retire on a boat moored in Italy and we have a plan to visit, god-willing. We're also looking at motorhomes to do some local traveling and it's so fantastic that traveling can be accomplished! Keep us in your thoughts and I will update as we get closer to surgery. Thanks again! Cat and Ed
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In reply to by Cat S.

Gregory D.

Here it is in black and white. I have had my LVAD for almost 5 years and not until recently did I have any infections or issues. My care givers have always been my wife and my children, however they have become more a set of shadows ensuring I am doing what is right when I am supposed to. The recovery is taxing, but it not that difficult. What makes it difficult for the LVAD is when the family or care givers are so worried that there is nothing the LVAD can do other than go along for the ride. Worry about things you can have have a positive effect on your husband and his recovery. Don't worry about the little things that you have no control over. They will always take care of themselves. What you need to worry about in his recovery, is to remind him that the pain that will be there is to remind him that he is alive, and that the sooner he gets off his rear and starts being active the faster he will recover. One of the most useful things you can tell him and he may or may not like it is when he is frustrated in the coming months from being concerned about the LVAD or the batteries and controller and begins to say, "I Can't". Is to explain to him there is no time for a Pity Party. He was given extra time for a reason, what the reason is who knows. But there is nothing worse than a person being given the gift of time and watching them P&M the hours away. Get up, Get out, and enjoy every good and terrible thing that happens everyday. I won't say go out and smell the roses, which isn't that bad. But live is full of Good things, Great things and Miserable things. But... thats just the way real life is. So relish it all, both you and he need to cover yourselves in it and be grateful to who ever or whatever. THere will be days where he wakes up and feels like crap and then there will be days he wakes up like nothing at all happened. So how is that any different than a normal life. Yes LVADs are special people, yes we need to be extra cautious when doing certain things. But we are still here and like the Energizer Bunny, we go on and on and on. Lastly being afraid of something as it is happening to you is a good thing, it means you will pay attention and learn. Just don't let the fear eat away at what you and your husband have or will have. Learn be positive, not giddy, always ask the MCS Group for answers, lastly please do not become bitter when the fear become too much. Learn, Listen, Live & Love Good Luck.
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In reply to by Gregory D.

Woodie M.

Do you mind if I copy this and paste on FB for my friends to understand why I have a "IIWII" (It Is What It Is) attitude and it's not a death defying mission I am on, I just want to live life like I was dying...live life is the key words.
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In reply to by Cat S.

mike d.

if you get a chance go out side and look. it sounds stupid i know but it sure beats the mind fucking i can do to my self! my doctors at christ hospital are good, but thay are 1 & 1/2 hours away from here. thay kept telling me to go to christ for help. i told them, would you like to drive to the hospital every 4 weeks to get checked when it can be done down the street at a nother avcate hospital. now i got the bad attitude. but a beautiful thing happened a doctor powa was sent that 1 1/2 hours to cheec on OTHER PATIENTS TOO. now i'am at the sherman in elgin thannk god. its just oh 10.00 in gas right. do stupid things like a stream or watch a storm slam into the east coast and think, what about the power. what! still talkeng with a bad attitude, if you know what i mean. keep loving and don't  forget about the guy up stairs. mike.

 

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In reply to by Michael H.

Mariza M.

I had my LVAD implant in August 2015. The first two years were really very difficult. In just 4 months I had to change my LVAD due to pump thrombosis.  I also experienced several periods at the hospital due to intestinal bleeding. Since end 2017, I am leaving a quite “normal “ life. I resumed my part time work as researcher, and take care of my grandchilds whenever possible. IN relation to dressing changes, I am still doing it in a daily basis as I still have a kind of serosal clear secretion. I’ve already done this changing every other day but in the last year I was oriented by my LVAD team to keep changing daily. I am scared when I heard here in the group that this can favor driveline infection. So, the beginning can be very difficult but we are able to overcome the bad experiences and try to have an almost normal life. I am still affraid for travelling.

Mariza

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In reply to by Michael H.

Mariza M.

I had my LVAD implant in August 2015. The first two years were really very difficult. In just 4 months I had to change my LVAD due to pump thrombosis.  I also experienced several periods at the hospital due to intestinal bleeding. Since end 2017, I am leaving a quite “normal “ life. I resumed my part time work as researcher, and take care of my grandchilds whenever possible. IN relation to dressing changes, I am still doing it in a daily basis as I still have a kind of serosal clear secretion. I’ve already done this changing every other day but in the last year I was oriented by my LVAD team to keep changing daily. I am scared when I heard here in the group that this can favor driveline infection. So, the beginning can be very difficult but we are able to overcome the bad experiences and try to have an almost normal life. I am still affraid for travelling.

Mariza

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In reply to by Mariza M.

Barry and Susan (caregiver) S.

  • ​Barry , my husband is 74.  My name is Susan, caregiver.  First LVAD Heart Mate II , Oct. 2016, second LVAD Jan. 2020, due to Short to Shield.   There have been many interruption since this last  LVAD .   IN AND OUT of  Rochester, Mayo, fall, infection, wound care, several operations.  He is weak, hard time breathing, sleeping is a challenge for both of us.   Our plus is, family support, living close,  we sold our home, now in a a smaller very comfortable , 55 and older apartment, with all of the amenities .   The best ever situation.  
     
  • The hardest part during this pandemic is missing our children and grandchildren.  We recently took the plunge and met most of them in northern Wi. at a resort we have been going to for some 35 yrs.  we each , 3 sons and their family, had our own cabin on a lake.  We figured we were just as safe with family and not amongst large groups.  So far so good, we are quarantined for two weeks , now on our second week.   It is faith and trust that we did the right thing.  
     
  • The hardest with the COVID is getting out for food and supplies and being safe.   I do order online probably 75% of what Barry needs for dressing,  Meds, and just comfort .  Food wise I will venture out, but with a list and very safely ( with Mask and constantly spraying and washing hands).   I have a difficult time with Instacart, or ordering food and pick up, always forgetting something.  We are trusting in God, keeping our faith, and staying very close to home.   Occasionally, we order out and go in the car to a park and enjoy, or have dinner at home with a close family member.
     
  • If our government word just get it together and forget the divide and work for one Country under God.  
  • Amen , Stay Safe, Bless us all.
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Profile picture for user rlouis1439

In reply to by Michael H.

ron l.

I'll begin here.  I've been following your posts on this site for at least 3 years and find it interesting and in some instances fascinating, as well as feeling a connection if you will, reading the comments. At some point, if I'm fortunate, I'll possibly have a choice berween a transplant and an LVAD.  I'm nearing the age where a transplant may not be an option. And that's not sounding  so bad. 

The advancements in the technology are so encouraging. With this backdrop, I would like to ask a few questions if I may. The majority of the experiences appear to be favorable. The questions I'd pose are (1) is an infection inevitable (2) is an infection a near disasterous experience  in most cases  (3) notwithstanding swimming, how close to old normal is it and (4) would you do it over again knowing what you know now? 

If you care to reply to some, all or none of the  questions, thank you nontheless for your impressive and encouraging stories. Sincerely, all the best. RL

 

 

 

 

 

 

 

 

 

 

 

 

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In reply to by ron l.

Barry and Susan (caregiver) S.

The advancements in the technology are so encouraging. With this backdrop, I would like to ask a few questions if I may. The majority of the experiences appear to be favorable. The questions I'd pose are (1) is an infection inevitable (2) is an infection a near disasterous experience  in most cases  (3) notwithstanding swimming, how close to old normal is it and (4) would you do it over again knowing what you know now? 
 

Dear RL,  

THE MOST IMPORTANT PART OF OUR SITUATION IS BARRY IS STILL HERE.  ITS BEEN A CHALLENGE BUT THERE IS ALWAYS A GOAL, LIFE AS NORMAL AS WE CAN MAKE IT.  WE KNEW IT WOULD NEVER BE THE SAME, BUT THE WAY HE WAS HEADING WAS NOT ACCEPTABLE .   

HE DID HAVE TO HAVE A REPLACEMENT, HE DID GET INFECTION, AND ITS BEEN A BATTLE THE LAST YEAR.  THERE IS NO OLD NORMAL.     HE IS STILL WITH US, HE BELIEVES IN GOD, AND WE SEE OUR SONS AND GRANDCHILDREN AS OFTEN AS WE CAN, LESS SINCE THE PANDEMIC, BUT GOD WILLING IT WILL PASS.  SWIMMING WAS NEVER AN ISSUE.  YES WE WOULD DO IT AGAIN.  

 

LET US KNOW WHAT YOU DECIDE,  STAY SAFE, GOD BLESS, BARRY AND SUSAN

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In reply to by Barry and Susa…

ron l.

For taking the time to reply. I'm sure most everyone  if not everyone, is interested and concerned. I'm not to the point yet where I need one.  God bless and all the best to y'all  as well.  Ron L.

Ron,

1. In my experience, 10 years out, I have not had a driveline infection so far, so I don't consider them inevitable. I credit my wife, the team at Shands in Gainesville, FL and the grace of God for being infection free so far. We change my dressing one a week. 2. It is my understanding that driveline infections, if and when they occur, are typically long term problems that are often difficult to deal with and can, over time, be fatal. 3. I miss swimming, especially when my grandkids are here. (We have a pool and Florida summers are long and hot.) Otherwise my life has been mostly normal, hampered more so by age and arthritis than by the LVAD. For now I rarely leave the house due to COVID and am not having any problems coping so far. 4. Yes. For me the LVAD was the only treatment option available.

I don't look back and have no regrets. So far, so good. Every day is a gift. My recovery was mostly uneventful and pain free. I have had two cardioversions and an ablation since implant to deal with afib and now have been in normal rythm for 2-3 years. No more problems with edema, no lasix needed. For me it's been interesting and somewhat of an adventure but does have its challenges to be sure.  

 

Hi Ron L.  My husband just turned 71 and has had his LVAD since early January 2018.  His experiences have been very positive and somewhat different than the majority of the posts I’ve read here.  First of all, unlike almost everyone I’ve read about, he showers every day!  Afterwards I replace his bandage (unless he is traveling when he changes the bandage himself.)  The LVAD team at UVA in Charlottesville, VA taught him how to load his controller/batteries into a water-proof satchel (which they/insurance provided) remove the drive-line bandage covering, and shower (with his back to the shower stream washing from his head down.)  He has never had an infection but if he does get one, it is not necessarily disastrous as long as it is addressed and treated right away.  3) Other than swimming, he is able to do anything including walking 2 or so miles a day, participating in 5 & 10K’s, and playing rather competitive Pickleball!  We have been on two cruises and before Covid, he was traveling via air for business.  4)  The LVAD saved my husband’s life and he is extremely grateful for it’s existence.  Even though he has recently aged-out as a possible transplant recipient, he is very very grateful for his LVAD.  
If you have any other questions or concerns, please feel free to contact me.

~ Pam J.  

Hi Pam L.  I realize every situation is different but while reading as much as I can, I find across the country and parts of Europe that more if not most are positive. I'm saddened to read of those that aren't.  The daily shower sounds so good.  Most touch on the fact that traveling is routine , notwithstanding the minor inconvenences.

I retired this year and am not yet faced with the decision although it won't be much of one when the time comes. Meanwhile thank you for your reply and I'm happy that things are goig so well. Wishing y'all the best. rl

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Robert F.

Hi, Cat. I was 70 when the HeartMate II was implanted in me on Feb. 9, 2011 as destination therapy for end stage congestive heart failure. Over the intervening years, I’ve moved from a sprawling suburban house to a downtown apartment a mile away from the hospital and from my daughter, have had to become the caregiver for my wife who’s had spinal surgery and has serious mobility and other health issues, have come to manage our household (marketing, cooking, washing clothes, cleaning, etc.), and have become a volunteer mentor to other LVAD recipients during their stays in a rehabilitation hospital. I lead a thoroughly independent, active and largely self-sufficient life, generally putting between two and three miles a day on my pedometer. Sure, there have been complications. I’ve had three internal bleeds in seven years, difficulties in getting the medications properly balanced, a TIA, and a stubbornly erratic pulsatility index, but I’m alive, active, and enjoying my life and family.
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Anonymous

I have had my LVAD for just over 2 years and despite a driveline infection (which they tell me I will have to treat for the rest of my life) my quality of life is great. My good news is the chemo put my cancer into remission. The bad news is the chemo destroyed my heart. the doctors said get the LVAD or die. I couldn't walk from one doctor's office to another on the same floor of the hospital without stopping to let my head catch up. My ejection fraction was 10-15%. Now I can out walk just about anyone. I keep waking up on the green side of the grass (a long story there), I'm traveling internationally again and back to gardening although on a smaller scale. I had my LVAD put in at NY Presbyterian and I'm monitored at the Univ. of Va Medical Center which has almost become family. I have no regrets. I was told that because my name was not Dick Cheney, I was too old for a heart transplant. Good luck.
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In reply to by Anonymous

Vanette J.

Hey I had a driveline infection I was treated for 6 to 7 months and then I stop talking the antibiotics 

I don't want to speak to soon but they said I would be on meds for it the rest of my life but thank the good lord I'm doing ok 

By the way I'm 53 I been going through this heart problem since I was 35

Had a massive heart attack right after I had my son

And it's been one thing after another 

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In reply to by Anonymous

Vanette J.

Hey I had a driveline infection I was treated for 6 to 7 months and then I stop talking the antibiotics 

I don't want to speak to soon but they said I would be on meds for it the rest of my life but thank the good lord I'm doing ok 

By the way I'm 53 I been going through this heart problem since I was 35

Had a massive heart attack right after I had my son

And it's been one thing after another 

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Larry B.

Breath Cat, breath. You are lucky in that you have had some time to research this before actually having the vad implanted. Most of us didn’t! I am 68 and have had my Heartmate 3 for 1.5 yrs now but have lived with heart failure for 25 years including a five way bypass 23 years ago. Like a previous poster I was back playing golf 4months after implant. I do everything I used to except swim. Small price to pay to be able to breath again and actually have some energy. There are other support groups on Facebook that I belong to that can provide more info than you will ever need. I belong to Facebook pages LVAD Friends, LVAD Conversations and LVAD Warriors. There is one called LVAD Caregivers that is only open to caregivers, no patients. Hopefully your vad coordinator will be able to arrange for another patient to talk to you before the implant procedure. Every time we are at our vad center we volunteer to speak to patients. As far as traveling goes we make sure to use our MyLVADHospital app to locate hospitals as close to where we will be in case of emergency. We also pay for air ambulance insurance just in case.
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In reply to by Larry B.

ron l.

Lgb0250, Hi. I'm 70 yrs. old (male) and had a massive MI 11 yrs. ago. I'm in the early stages of chf. I am still active and can exercise. I would like for you to please tell me about your 25 yrs. living with heart failure. For example, how early in the 25 yrs. did your symptoms begin and when did they worse? Or anything you'd care to share. Realizing that everyone adjusts differently, I'm just curious as to how long you were able to go before it got severe. All the best. Thank you.
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In reply to by ron l.

Larry B.

I just went back and saw your post from months ago. Sorry it took me so long to get back with you. I was a heavy smoker and one day I walked over to the store to get another pack and the whole way back I felt like I had heartburn. Went back to the store and bought a bottle of Maalox. After drinking the whole bottle with no relief my work mates suggested I go see my doctor. I did. He ran an ekg and while I was waiting for home to come back in I heard him on the phone calling for an ambulance. Being the great patient I am I told him I was not going to panic my family. I drove myself to the hospital after calling my wife at work and asking her to join me at the ER. Ended up going through several days of testing before finally having my bypass surgery. I had complications during surgery and ended up having three MI’s and was on the table for 14 hrs. 10 days later I was home. One day later I got caught outside by my neighbor because I was on the deck washing the screens! She called my wife who came home from work and took me back to the hospital immediately! I had a wonderful surgeon. He told my wife to not worry. Said when I had sufficiently worn myself out I would crash! Took 3 days but he was right. I was a model patient for at least two weeks after that.

After recovery I went back to work full time for the next 7 years. Felt great except for one more MI about 2 yrs later. When I was 50 it started catching up to me and I ended up with a lot of chest discomfort. Ended up going out on 100% disability. Still felt pretty good overall and was able to play golf twice a week for many years. When I was about 65 it started to catch up with me. Shortness of breath and general feeling of weakness.They put me on the transplant list but I was a stage 2 so I really never had a chance for one. Was still playing golf although I was finally using a handicap flag. They put me back in the hospital to do some more tests. That’s when the VAD coordinator started pushing a HM3. I flat refused. Told them I was still doing ok, considering! They put me on a milrinone drip for a couple of days and wanted to send me home with a pic line. I asked if I could play golf with a pic and was told no. I refused. I asked them to put me on Entresto. It was fairly new and they said ok. That lasted for three months and the shortness of breath and weakness returned with a vengeance.

I didn’t even have to go in and see the surgeon or do any further testing. I called my transplant doc and told him I was ready for the LVAD. The LVAD surgeon called me late that night. Three days later I was admitted for a lube and tune (more mlrinone) and three days later received my LVAD. 10 days later I was home. 4 months later I was back on the golf course.

Had clinic yesterday and where my kidneys were about shot from over 20 years of lasix, mine have fully removed now. Have not had to take any lasix since recovery. Life is good.

Now, to make a long story short Ron, I basically went almost 25 years between having my bypass surgery and being diagnosed with end stage CHF until I needed the LVAD. An MI itself is not a major problem. It’s the damage it does that determines a lot and what condition your arteries are in. Mine were terrible. Within a year of the 5 way bypass, 4 arteries were occluded already. Hope this helps in some way.

 

 

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In reply to by Larry B.

ron l.

It sure is informing to hear your experience for the past 25 yrs. I understand that LVAD technology is advancing at warp speed. And maybe one day there'll be a fully implantable one. If this happens will you be able to have one implanted? Also, what do you mean by Stage 2 preventing you from being considered for a transplant. Do you have to be Stage 4 and why the need for an LVAD at Stage 2? Thanks again and I wish you the best.

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In reply to by Larry B.

ron l.

It sure is informing to hear your experience for the past 25 yrs. I understand that LVAD technology is advancing at warp speed. And maybe one day there'll be a fully implantable one. If this happens will you be able to have one implanted? Also, what do you mean by Stage 2 preventing you from being considered for a transplant. Do you have to be Stage 4 and why the need for an LVAD at Stage 2? Thanks again and I wish you the best.

Profile picture for user rlouis1439

In reply to by Larry B.

ron l.

It sure is informing to hear your experience for the past 25 yrs. I understand that LVAD technology is advancing at warp speed. And maybe one day there'll be a fully implantable one. If this happens will you be able to have one implanted? Also, what do you mean by Stage 2 preventing you from being considered for a transplant. Do you have to be Stage 4 and why the need for an LVAD at Stage 2? Thanks again and I wish you the best.

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In reply to by Larry B.

ron l.

Larry B.,

Looking back and was reminded of our conversation. Hope you're doing well. Status quo over here. All the best.

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Ian P.

I have had an old model LVAD (Ventrassist) for 9 years now, so it shows how durable LVADS are. Life has not been easy with it, but the pump itself has performed perfectly. Ian.
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In reply to by Ian P.

ron l.

Hi Ian.  I have read your post a couple of times and have meant to reach out to you. I read where it is approved in Europe. Is a newer generation model still being used and are you getting along well with yours? Obviously after 9 yrs., there's a lot to be said. Wishing you all the best.

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Mary G.

Hi Cat, I just had my surgery on February 16, 2018. I am 71 and this is destination therapy for me. The timing was my choice. I was actually feeling really well but knew that it would not last. The better you feel going into the surgery the better the recovery. I had some complications with the surgery itself. I was on a vent for a few days (of course, I was totally out for this). I was in ICU for about 15 days and in the hospital for 24 days. I have only been out for about 2 weeks. I have had some sternum pain, but no pain where the driveline is. It is difficult to remember that the LVAD is now your closest friend. Your husband will sleep and shower attached to the machine. My husband changes the dressing for me. Perhaps I will learn some time in the future when everything if fully healed. I have occupational and physical therapists coming to the house. Being in bed for so many days really weakens a person. I feel really well. I am still a little weak in the legs and arms. There will be sternum restrictions when he first has the surgery. Talk to your VAD team about these. I would do it again.
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Brian L.

While I do have a Heartmate II as a "bridge to transplant", I have had it with limited complications for almost two years. The quality of life is worth any inconvenience. Even if this were the only remaining treatment for my heart condition, I hope that I would have taken it, as I literally died and had to be revived before it became apparent that I couldn't wait any longer for a heart. These two years (and what I hope are as many more until I am the one to receive a transplant from the list) have been a blessing, allowing me to enjoy some extra time with my wife, coordinate several blood drives at my church (among other activities) and recently plan a trip to see my grandchildren, whom I haven't seen in almost three years. I am even considering a return to coaching baseball that I gave up a few years ago. I did have one complication (a minor staff infection that required surgery, a few days stay in the hospital, and an antibiotics for a long term treatment regiment) and there have been a couple of what I call "user errors" (forgetting to drink enough water and leaving the house with dead back-up batteries) that have created some interesting moments: Fainted during communion and had no less than five EMTs at the service rush to my aid with water bottles. The second time, I had to leave the service -while making hand motions to our pastor- and hook up to the DC power in the car and drive home to get charged batteries. I can assure there isn't a Sunday that I don't enter the church that at least a handful of people ask me if I have drank and brought enough water and have charged batteries in my wheeled backpack that goes with me everywhere. But, the alternative wasn't all that appealing and I often counsel those considering one (noting that nine years ago when I was told it might be an option down the road that I would never walk around with all that equipment and a piece of metal humming in me) that it is worth it and then some. I don't know why others have such difficulty with them, but the vast number that I know at Duke have few difficulties. Just heed any warnings about being very antiseptic when you do the bandage changes. Infection is the one major enemy of LVADs. Brian
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In reply to by Brian L.

Barbara Cole C.

Brian, thank you so very much for sharing. I received an LVAD Heartmate3 January 5, 2018. I too have had little complications with the LVAD. It is so encouraging to know that you've had your LVAD for 9 years with few difficulties. I have to admit that the recovery from the surgery was gruesome for me. I had an extremely difficult time with sternum pain and bowel functions.  I developed anxiety and I'm seeing a wonderful therapist who has played a major role helping me to adjust to my new way of life. I would strongly recommend a therapist for both you and your loved ones while going through this process. I have chosen to continue seeing my therapist simply because it has been a major help in my recovery.  I have chosen not to have a heart transplant although I am only 60 years of age. I'm not sure I can go through the surgery again. As I mentioned it was painful and my recovery has been slow but steady. I'm beginning to move around  more through traveling and enjoying everyday activity. I am however disappointed in the fact that I have gained over 30 pounds this year. I say its the meds. the doctors don't seem to agree, they seem to believe my very limited activity for the first 6 months after surgery is the reason. Other then that, I feel good and looking forward to living my BEST LIFE NOW  day by day! 

In regard to the sterile dressing change, our VAD Coordinator drilled this in our heads over and over and over again! They did this to ensure that we understood the importance of following their instructions carefully and not to take any short cuts. WE follow the sterile dressing change to every detail!!!.   

Thanks again Brian

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Steve H.

I had a Heartmate II implanted 7/16. I was 63 and diagnosed with end stage CHF. It was destination as I was/am also fighting cancer. Like all surgeries, there are risks which your doctors should discuss with you and your husband. In my case, the potential benefits outweighed the risks in my mind. There some in-surgery issues which surgeons resolved, kept me sedated for 3 days. Had a "mild" infection at one of the drain sites, but promptly treated with antibiotics. 2 weeks in Cardiosurgical ICU and step down. Transferred to a rehab unit to regain strength for 2 weeks and then home. Took me 2 months to feel " normal". One of the risks of an LVAD is that it generates heat which can cause blood clots. I got one which caused a heart attack. Pacemaker/defibrillator worked as it was supposed to and LVAD kept pushing blood. Was in hospital 2 weeks on clot busters and then home with increased Coumadin. My VAD team at Northwestern Medicine in Chicago monitored me closely. Ordered a home monitoring unit for testing g INR( blood thickness/clotting #. ) and test weekly. Other than that I am doing ok. May want to ask Dr.about Heartmate III, which has some advantages over the II. I was part of the trial and I THINK the FDA recently approved this for use. Hope this helped . Good luck to you and your husband.
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Tammy T.

My dad was 77 when he had his LVAD surgery May of last year. He also had a defibrillator for the past ten years. At the time of surgery he only had 10% cardiac function. He had a couple of post op complications ( including icu delerium and a femoral bleed). It wasn’t easy but he was out of the hospital and rehab by his birthday in August. His hospital was 1.5 hours away and it was often times hard to encourage my mother to also take care of herself (proper rest, eating right, etc). Since his surgery he has had no drive line infections but several hospitLizations for gi bleeds. Some of the complications of LVAD surgery can be gi bleeds as well as clots. My biggest advice is to make sure that you and your family prepare yourself for your new life. Because realistically, things change. Not to say that you will not be able to do activities or travel but that there will be additional work and equipment in doing so. Daily tasks do increase but look at what you will get in return— time with your loved one. My day passed away 2 weeks ago and we miss the extra work terribly. He did not pass away due to his LVAD complications but had been hospitalized recently with a gi bleed and acquired MRSA in the hospital. Sending my prayers for you all as you embark on this new normal life. Tammy in GA
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Kathy C.

Hi Cat, I have not logged on to my lvad for a couple of months now, and your post is tearing at my heart. I understand "beyond word's" how you are feeling! My husband was one of the "unlucky", if you will, recipients of the lvad, but he was more so a victim of the health care system in Canada and lengthy wait times. Stay strong Cat, you have to and BE POSITIVE!!! Sending Love, Prayers, Thoughts and Positive Energy your way.
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Cindy R.

Hello! I would love to give you a positive story. In 2010 I was in heart failure due to a virus, at the age of 50. I was given the LVAD to save my life when my heart completely failed. The surgery is tough, don't get me wrong, but when you look at the alternatives, it is doable, even though it takes a good six months to completely recover. Next I will tell you about my 7 years with the vad. I had an infection after 3 years, was admitted and treated, feeling fine. I was told that once you have an infection, you will always have an infection. I heard it, but didn't understand until Jan of 2017, at 7 years, when the exact same infection returned again. It had attached itself to my vad, because it is non-organic, and remained dormant until then. This time the infection was serious, I had fever and pain. After over a month in the hospital, my entire system was removed and replaced. This was my best chance for extended life, opposed to 1 year left or hospice. The way I was feeling, hospice would have not been long. Anyway, I was truly blessed to have a 3rd chance to live longer. I had 1 grandchild when I first was sick, and now I have 3. I beg that you listen to my warning, INFECTION KILLS AND IS THE GREATEST DANGER (NEXT TO YOUR INR) TO AN LVAD PATIENT. The driveline must be cleaned each and every day, no exception. I had skin irritation issues and scratched too hard as well as delayed cleaning. I hope nobody is in the situation I was in...close to hospice because of stupid laziness, and scratching too hard, all your own fault, all that could have been avoided. So I have recently had my annual, post surgery appt. and am doing well. I change my dressing each and every day, using the sterile method. I scratch my leg instead of my driveline. I drive, cook, clean, just about anything I have the energy for. I wish you and your husband the best. Sincerely, Cindy J. Ruth
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In reply to by Cindy R.

Ruth or Gary L.

My husband became terribly allergic to the clora prep that is in the drive line kit when you change your bandage . That cause itching and a terrible rash. Check it out.
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In reply to by Ruth or Gary L.

Chiplon W.

I became very sensitive to the sticks in the packets. So, my physician, Dr. Skipper, had my wife to switch to the liquid Hibiclens and use qtip swabs to clean the areas. Done fantastic and have had no aftereffects from the treatment. I understand that there are several people that can't tolerate the swabs. Just have to use an alternative cleaner.
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In reply to by Ruth or Gary L.

Myriam T.

I have had me LVAD since June of 2012. I was also very allergic to clora prep. I have been using IODINE packets with 3 swabs and they work perfectly.
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Woodie M.

Hi Pat, LVAD as of 10/11/2017. CHS and only 10% pumping. Bluntly told that it was either LVAD or die within 2 months and be in a whole lot of pain. I went through the process of getting lvad and did get one. Now I'm jumping through the process again to be listed for transplant (I was a smoker until attack so you have to wait 6 months and go through the process again) First and foremost, get to know the clinic, tell them everything, they've heard it before and usually won't yell at you (a stern scolding for me now and then but I'm Scottish and male so it's bound to happen) get to know FB support groups (LVAD WARRIORS, and the misfit one too) see if there is a local FB support group for your hospital. And of course here. always good to know that you are not alone. AND YOU AS CAREGIVER need support too. we as your patients rely on you more than we know sometimes. the good the bad and the ugly. The Good, I'm alive and on the green side. Getting stronger every day and looking so forward to RVing, checking in with LVAD clinics and first responders when stopped. Might even take trip to Hawaii since I've never been there. You shall mend hopefully. The bad, it hurts like hell until you heal. You have a 4lb. ball and chain that you HAVE to remember it is there (like stepping away from the sink while brushing your teeth) some people have trouble sleeping, I just tuck mine behind my back and just relax. Lucky people sleep at least 4 to 5 hours at a clip. get a book, it helps until the next clip. you explain the weird fanny pack hanging off you and the looks you get when you say that the wire goes into you body...oh my. you can't go underwater diving or kayaking (precautions) but you find other hobbies to do. The ugly, the worrying that something "might" happen. there is so many better things in life so stop worrying about the ugly and just enjoy the time you have. I'm sure there is so much more but it does get overwhelming that you think your head is exploding. reach out and you'll be surprised just how many of us will get back to you. I hope along my travels to meet other LVADers and sit around a campfire and shoot the s&^t
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Diane Z.

Lots who have gone through it with our spouse or ourselves.... both if my sons are MD’s, there was a hospital in our hometown, Little Rock, who had been in since the beginning, my husband at 5 bypasses and later a stent, but we never heard of a LVAD until last January while visiting in Tampa.... Even today, there are so many resources out there... my blog, is our day by day from before our LVAD journey, hubby is not transplant eligible, has a heartmate 3 ZeeLarry LVAD https://zeelarry.blogspot.com I have linked tips and other resources on it.... Prayers.. Diane Ziemski, caregiver for LVADer....
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Joyce T.

My husband was 69 when he got his Lvad, before that he was very weak and sick. I did not think he would survive the surgery, but thank god he did. I’m sure you and your husband are at that place right now. But I tell you trying to get better with the LVAD is better than the alternative. This may be tough to here but wouldn’t you rather try for s better life and not have to watch your husband struggle with a weak heart. I am glad we did this , Glen as good and bad days. More good than bad. He does not like carting that bag around, but he does. I know you are scared but it sounds like the LVAD is your only hope The doctors and nurses are the best. If you want to talk. Please call us. We live in Las Vegas. My number is 702-722-2220. You call me whenever you want. We had a man by the name of Rick and his lovely wife Susie that came to our room everyday to talk to us and they explained so much to us Glen and I would like to be your Rick and Susan. God bless you both. Joyce
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Janet N.

Our NP suggested we alternate the clora prep with betadine when we do our weekly dressing changes. It seems to help. The betadine won't come in your sterile kit though, so be sure you handle it properly when doing a dressing change.
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Janet N.

Cat, It's going to take time for your husband to heal, depending (in my opinion) on how active he was prior to the surgery. My husband's congestive heart failure robbed him of his health for about a year so according to our NP his recovery is going to be slow. We have recently met another LVAD patient with a Heartmate II who is 73 or 74, and his heart failure was more sudden, so he had been active right up to the time of his surgery. He looks great, and he's leaving the hospital today (his 12th day after surgery). I think every patient's response is going to be very individual. Take one day at a time, and follow medical advice. I find that if we stick to the NP and doctor's recommendations, they have an easier time figuring out a solution to any problem that may come up.