Where are the recent posts, I am scared!!

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

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.

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.

 

• ​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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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

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.  

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.