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Amy T. Caregiver

LVAD and dialysis clinics

My husband has a LVAD and unfortunately is now on dialysis three days a week at our local dialysis clinic.  We can't be the only ones dealing with this! I have had to quit my job so that I can go to dialysis with him and sit beside his chair in order for them to do dialysis on him.  They had to be "trained" but told me that they are only trained on how to do dialysis on a LVAD patient but not on how to take care of his LVAD! Seriously.....these are RN's.  Last time I checked, I do not have my nursing degree!

Our household has tested positive for COVID.  My husband, thankfully, is asymptomatic.  Instead of being able to go to their dialysis location for covid positive patients, he had to be admitted to a covid floor so that he could get dialysis since his clinic never had a plan in place to have other nurses at that clinic trained for his lvad.  He will now be inpatient, taking up a bed on a covid floor, with no symptoms for 21 days before we can return to this clinic! This is the most asinine thing I have ever heard of! 

Does anyone else feel like they are on their own in dealing with healthcare's policies on lvad patients?  I just feel like there has go to be a better way of dealing with this! I mean it has to be cheaper to get a temp RN trained to to dialysis on an lvad patient that it is to be inpatient for 21 days when you aren't even sick! 

Sorry for the rant but I am so tired of this! As thankful as I am for this technology, I am equally frustrated that healthcare facilities haven't caught up.  I feel like this just leaves us in limbo trying to figure it all out for ourselves..... 

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Patricia F.

We are in a similar situation. Before my husband's discharge from the hospital, and immediately following his LVAD placement,  it was determined that dialysis would be required and he was put on daily hemodialysis. We live 2 1/2 hours (and a ferry ride) from the nearest dialysis center that performs hemodialysis for a patient with an LVAD. Similar to your situation, we would have to travel there a minimum of 3 times a week. Our LVAD team and nephrologist decided to try peritoneal dialysis to avoid this situation. They also had to persuade the local (local to us) kidney center to agree to take on a PD patient with an LVAD. Fortunately, the local kidney center agreed and I was trained to perform the daily peritoneal dialysis for my husband. It's annoying and can be very limiting to daily activities. In his case, the peritoneal dialysis cannot be done at night using a PD machine because the placement of his PD catheter is not optimum. Since he had such a difficult recovery from the LVAD surgery (months in the hospital and still very physically limited) he is not a candidate for repositioning the catheter. However, he is still alive and we are adjusting the best we can to our new lifestyle. If peritoneal dialysis hasn't already been ruled out by your husband's LVAD team, it might be worth a discussion. Best wishes.

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Ricardo M.

Sorry about your difficulties.  
Just be thankful.

Each one of us undergoes different difficult scenarios and we just do the best we can.  I hear you and I feel your frustration.  I am extremely grateful that my wife helped me and I cannot imagine the immense pressure, place on the shoulders of the caregivers that help us deal with this.

Thank you

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JoAnn B.

We just got the news today that the LVAD is likely the next step. Any advice? Pros cons what to expect?

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Patricia F.

For us, LVAD was the only step. My husband is not a candidate for heart transplant; too old. Our only other option was Hospice. It's hard to tell you what to expect. Some sail through the surgery and are out of the hospital in 3 weeks and on their way to recovery. My husband wasn't one of them... He had his LVAD surgery Oct 27, 2020. It's been over a year and he hasn't fully physically recovered. He was in the hospital 4 months and was horribly de-conditioned when he left. He did receive physical and occupational therapy while he was in the hospital and that helped somewhat. He was bed bound until we started using a Hoyer lift to transfer him from bed to chair, etc. He wasn't able to walk for several months after coming home. He is still very limited, can only walk about 50 yards with his walker before he gets winded and has to sit down and rest; he can only do that a once or twice a day. He developed hospital delirium during his stay and hasn't recovered completely from that; it left him with short term memory loss. We have the conversation about whether we would do it again, given the outcome and the answer is yes. Since he is still alive, there's always more progress to be made. Without the LVAD, there wouldn't be the opportunity for progress. His activities prior to surgery consisted of gardening, fishing and hunting; none of which he has been able to do since surgery. However, we will make adjustments. We will get him a disabled hunter's permit next year and get him back out. We bought an older motor home which we will use to visit the kids. The motor home allows us to do his dialysis and keep his batteries charged while we're traveling. The pros and cons can really only be evaluated by you. You will see a lot of good outcomes on this site and your situation could easily be one of those. If an LVAD is your only choice, I wouldn't wait until the last minute; you want to go into it in the strongest physical condition you can. I hope I haven't rambled too much or discouraged you. Like I said, we would do it all over again. Best Wishes.