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Sandy_barbour's picture Sandy_barbour
Discouraged
Wed, 10/02/2013 - 4:03pm

Hi I am new to this forum so bear with me. My husband has been ill for 11 years and had his LVAD 2 years ago. He has had many complications such as GI bleeding, MRSA, 2 ileus and required many blood transfusions. He has been in the nursing home two times to get IV antibiotics for the MRSA. He was on the 1a transportation list he got the second ileus and was taken off of the list just got a call and he is back on the list but is on 1b. We are so discouraged,and I am not handling this whole situation at all. Need some guidance.

Sandy_barbour's picture Sandy_barbour
Tue, 10/29/2013 - 2:08pm

Well I am back (wish someone would share some guidance) my husband is back in the nursing home this time with the worst infection he has had. He had emergency surgery and had 5 pockets of infection. They made 2 incisions and tried to clean him up. This was all without a fever only a little red spot. He is in the nursing home with wound vacs and IV therapy. Off of the list. How do you all deal with this????????

Hammy's picture Hammy
Sandy_barbour
Thu, 11/12/2015 - 12:51am (Reply to #2)

Sandy, from what I've learned, researched, once an LVADer has MRSA and it reaches the pump, they have to be on antiobiotics for as long as they have the LVAD, and the only alternative, if EF is above 40-45%, is to be explanted (removal of the LVAD).

Has your husband ever been put on an iron supplement to help bring up his red count, hemoglobin and hematocrit?

Instead of blood transfusions, they should really consider Epogen or Procrit injections. It reduces the need for allogeneic blood transfusions.

jimmy's picture jimmy
Fri, 11/01/2013 - 4:25pm

I wish I had an answer for you truthfully. Being the caregiver is one of the most difficult things I've ever had to do. My wife wasn't one of those patients that never had problems, and that makes it more difficult as you have found out. But the one thing I can say in all honesty, no matter how hard it was at the time, I wish I was still doing it. I lost her 18 months ago after a blood clot developed in her LVAD, and the blood thinners caused internal bleeding that they couldn't do nothing for. So don't give up, keep doing what you are doing, takes a very special person to sacrifice as you have, just know if you weren't doing it for him, who would? Take care and God bless you

CambiataGN's picture CambiataGN
Wed, 11/20/2013 - 2:02pm

I know what you mean. My sister hasn't had her surgery yet, but she is starting out at a huge disadvantage. She has been in heart failure for over a dozen years (thanks to adriamycin chemo for breast cancer). She had a stroke 11 years ago, but with almost no ill effects. In the interim, she's been hiking, cycling, skateboarding, running.
This September, she entered the hospital because she was having excessive trouble breathing. After several days, she was transferred to NewYork-Presbyterian. The following day, she had 2 strokes. The first had little impact, but the second left her with severe aphasia and paralyzed on her right side. She regained use of her right leg, and her speech is steadily improving, but her right arm and hand are still not back.
Three weeks ago, her ef dropped to 10 and they did emergency surgery and connected her to an external LVAD. She's been in the CTICU since then. We're now at a point where they are contemplating implanting an LVAD in about 3 weeks, if she can get strong enough. However, because of the stroke, she won't be able to do much of the VAD care herself. That means someone who is trained by the hospital always has to be with her. I work an hour+ away and NEED my job and I am also a freelance musician, with performance and rehearsal commitments. My partner will help, but his availability is limited. And two of her friends are going to get trained (bless them), but they can't be there much, either.
This is terrifying - it feels like trading her life for ours (sorry if that sounds selfish), but there is no option.
We are desperately seeking resources in our area, but anyone would have to be trained by the hospital (and they're not willing to do unlimited training sessions).
I just want to curl up in a ball and die.

Dorene_Martinez's picture Dorene_Martinez
Wed, 11/20/2013 - 4:37pm

My husband received his LVAD in July. He has had setbacks and recently (November) had a GI bleed. He is 56. Jefferson University in Philadelphia is wonderful. We are also dealing with the emotional uncertainty that accompanies this life changing event as we await his human heart transplant. I cry often and do not sleep to ensure he is still alive. This journey is not easy but there are bright spots. We can laugh over his unending procedures and what he is now unable to do. People have stepped in and the spirit of community is wonderful. As I care for him I am unable to work. The stresses are unending, financial, emotional. We are also raising teenagers. Keep fighting and tell people you love that you love them EVERY DAY. No one can truly understand what this feels like until they are confronted with this situation. Dig deep cry and hope. Get angry when you need to. Find gratitude in friends and support in family. This life change is a hard on the LVAD patient as it is on us.

Walt's picture Walt
Fri, 12/20/2013 - 12:07pm (Reply to #6)

I have my lvad since Feb 2012.It has been life changing for me & my caregiver wife.who does a wonderful job.She had the same anxieties as you do
but she slowly came to realize this is it.Working together we are managing pretty well.The GI problem still occurs occasionally & checking my hemoglobin on a regular basis is necessary.When to low a blood transfusion is the next step.
Your husband is waiting for a transplant which is something to look forward to.
I did not have that option due to age.Stay strong,good luck & try to have a merry Christmas.
Walt

bhowie4865's picture bhowie4865
Thu, 06/19/2014 - 8:55pm

To the person in Great Neck-St. Francis Hospital and Stony Brook Hospital are now performing LVAD surgeries. Contact them to see if they can recommend some assistance.
I am a caregiver and cherish each day with my husband. We have been together 37 years and although he gets cranky sometimes due to the inconveniences and fear and I get sad sometimes due to having seen him suffer so much, we are honest with each other. I also told him that I need time alone and to do many of the things I have always done so that I do not become resentful. Although he doesn't like it all the time, I stick to my guns and do what I need to do.

acura's picture acura
Going through the samething
Mon, 11/02/2015 - 8:01pm (Reply to #8)

My husband has had his LVAD for almost 3 yrs. now. He gets down and says I don't know what it is like . I don't but I'm living it every day with him. Our life in the past has been about water . We live on a lake and have a condo in Fl. At the ocean. That has been very hard for me. I feel guilty going into water because of his situation. He used to take a shower/ bath every day before his Lvad. I feel guilty taking showers when he is around . Because he knows he can't just hop in and take one anytime like I can. It's going to be our 50th wedding anniversary this month. There is not much to celebrate . With all of his mood swings and all. I am always on edge

Deb218's picture Deb218
Water Life
Mon, 08/15/2016 - 8:17pm (Reply to #9)

Why don't you and your husband shower together? My husband received his Heartmate 3 back in November, had a second open heart surgery to remove a blood clot only two weeks later. He spend almost 3 months in the hospital but has been doing great since he is home. It took a few times practicing how best to put his equipment in the shower pack but we have it down to only 5 minutes to get ready for a shower. I almost always shower with him but he has showered alone a few times. I'm not certain why your husband is unable to shower whenever he wants, does he have other issues that do not allow him to shower? My husband was not a big swimmer in the past but does seem to wish he could swim once in awhile. I always change his drive line dressing after a shower just to be on the safe side that no water got in under the shower patch. We have avoided drive line infections. We are also in Florida and with the Florida heat I always change the drive line dressing if he has been outside sweating during the day.

memerson2000@gmail.com's picture memerson2000@gm...
showering
Tue, 08/08/2017 - 9:57am (Reply to #10)

All the posts on here are so old, I don't even know if people who wrote still have the LVADs, got transplants, passed away or what???

My husband is two months with LVAD and his doctor doesn't want him to shower at all. We've rec'd no education regarding showering, though in the big box of stuff to take home, there's a shower pack. Actually, there's two, and that might be the reason doc doesn't want showering---my husband has RVAD/LVAD.

Pat300's picture Pat300
shower
Sat, 08/12/2017 - 7:57pm (Reply to #11)

My husband is four months with the heartware lvad, it too came with a shower bag, with instructions. We waited as long as we could, I did not feel comfortable putting the controller in the shower bag, and IN the shower. We put the existing bag in the showerbag, after removing the shoulder strap. I cut a slit in the shower curtain and hang the bag on the shower rod outside the shower curtain.
I stay outside the shower to monitor it. Right now, it's a two man job, but we'll worth how great he feels after a shower. We triple cover the driveline site. Good luck.

helpinghand's picture helpinghand
Support
Mon, 07/20/2015 - 10:44am

Sandy_barbour (and everyone else on this thread), I truly hope things are better, as I know how challenging all of this is. My uncle was on an LVAD for a very long time. I recently had the pleasure of talking to two LVAD-and-heart-transplant survivors who founded Heart Brothers. While in the hospital on the transplant list, they promised each other if they ever made it out alive, they would start a foundation to provide support to others in whatever way possible. If you still need help, reach out to them. Their e-mails are on their website. http://heartbrothers.org/who-we-are/ I am so inspired by their stories, and their determination to give back to this community. Wishing you luck, and wishing you and yours health.

Dpatters's picture Dpatters
I cared for my husband the 3
Mon, 10/19/2015 - 5:08pm

I cared for my husband the 3 years he had his LVAD. Sadly, I lost him this month. While changing his dressing and monitoring his meds was not that difficult, the complications that arose from the LVAD itself were something else. He suffered gastro bleeding the entire 3 years, requiring a transfusion almost weekly! When blood thinners were discontinued, he had a stroke. Lastly, he developed a driveline infection from which he was unable to recover.

There are two things I've learned from all this. First, I don't believe the medical community does a proper job of advising potential recipients of the very serious life-threatening complications that can arise from an LVAD. Secondly, I believe the LVAD is a flawed device and should not be recommended as destination therapy.

Lucy2's picture Lucy2
Unexpected injuries after LVAD placement
Sat, 11/07/2015 - 8:55pm (Reply to #14)

I can sympathize with you all. This is a tough job, but as you mentioned, it is worth it. I am fortunate to have my husband alive after he received his LVAD.

When they started his surgery (opened him up), they latched on to some scar tissue. This cause a tear in some of the main veins. He lost a lot of blood and incurred two eye strokes. He came out of the surgery not being able to see at all. After a few days, he only regained partial sight in one eye. The other eye was and still is totally shot (blinded).

There were other things that happened to my husband in preparation for the surgery which were done incorrectly. There was a tearing of a sphincter cuff that was formerly put in place to manage incontinence because they never shut down the sphincter pump correctly.

When my husband left the hospital, he came home with a new pump, but was blinded, and back to being incontinent. This was more than he bargained for. He experiences frequent bouts of depression.

I still think the doctor's should have done more investigating (previous existing scar tissue) as part of the work-up. I hope this will help others-caregivers and professionals. I don't like to think he has and is suffering in vain. Note: My husband had a pace-maker/defibrillator already in place (prior to the LVAD surgery)

Lucy2's picture Lucy2
Unexpected injuries after LVAD placement
Sat, 11/07/2015 - 9:02pm (Reply to #15)

I can sympathize with you all. This is a tough job, but as you mentioned, it is worth it. I am fortunate to have my husband alive after he received his LVAD.

When they started his surgery (opened him up), they latched on to some scar tissue. This cause a tear in some of the main veins. He lost a lot of blood and incurred two eye strokes. He came out of the surgery not being able to see at all. After a few days, he only regained partial sight in one eye. The other eye was and still is totally shot (blinded).

There were other things that happened to my husband in preparation for the surgery which were done incorrectly. There was a tearing of a sphincter cuff that was formerly put in place to manage incontinence because they never shut down the sphincter pump correctly.

When my husband left the hospital, he came home with a new pump, but was blinded, and back to being incontinent. This was more than he bargained for. He experiences frequent bouts of depression.

I still think the doctor's should have done more investigating (previous existing scar tissue) as part of the work-up. I hope this will help others-caregivers and professionals. I don't like to think he has and is suffering in vain. Note: My husband had a pace-maker/defibrillator already in place (prior to the LVAD surgery)

Hammy's picture Hammy
Be your own advocate. Research everything!
Thu, 11/12/2015 - 12:22am

I can sympathize with every one of you. It is not an easy journey. Our journey, like many others, was an unexpected event. No warning, no planning, other than a defibrillator. Never made it to that point. My husband ended up in the hospital before he met with the EP doc. Bad hospital, and a stent placement gone terribly wrong, lead to a heart attack, further damaging hubby's left ventricle. The only saving grace was demanding he be transferred to a bigger, better hospital with a cardiothoracic team. Never heard of an LVAD until arriving at UNMC.

As caregivers go, I'm sure you were all in the same whirlwind of emotional stress, not knowing what the future held, if your wife, husband, loved one was going to live or die, watching them struggle hours on end to breathe, to live. I felt guilty for being able to breathe freely, to walk the halls without struggle, and realized those simple few things are something we normally don't think about, we take it for granted, until you see your loved one gasping, and panicking because he/she can't get enough oxygen. And then you have to deal with 101 people coming in, asking neverending questions, but you do everything in your power to keep it together because you know you have to be their voice. Oh the things we will never ever forget! But you wished with all your heart for their lives to be spared because the alternative was just too crushing, too painstaking to accept. We're all thankful for each day we have with our loved one. When I get overwhelmed, I think back to that time and remind myself that I'm lucky he's still with me.

I'm one to research everything and I've learned more about the LVAD, the ups, downs, in betweens, from researching every aspect of it. I don't think the teams know everything there is to know about the LVAD'S, only what they need to know. They don't have all the answers so sometimes it pays off to research. GI issues, bleeds, ect. Yes we all know coumadin (warfarin) increases your risks for GI bleeds, hemorrhages, ect. But it's not just the coumadin. The antiplatelets drugs, along with aspirin, keep the platelets from forming clots, which is their job, to form a clot at the site of injury, to close it off and keep one from bleeding out. A lot of the drugs, in combination, are dangerous, but unfortunately, necessary.

The LVAD can cause ischemia (decreased oxygen) to vital organs, including the intestines, which can cause ulcers, or tissue death. The team never mentioned any of this. Ever. When my hubby was hospitalized for abdominal pain, the CT scan showed thickening in the wall of his colon (large intestine). They thought he had colitis (inflammation of the large intestine) or possibly cancer. I knew it wasn't cancer but only because he had a CT scan 2 months earlier (was pancreatitis that time) and there wasn't any thickening in his intestines at that time. Had a colonoscopy and they found a hemorrhaged ulceration. Did a biopsy. But we didn't get the results until 4 weeks later at his monthly cardiac visit. No answers from the team, although I was able to get the path report because I work at the primary care clinic my hubby goes to. Path report showed necrotic (dead) ulcerated tissue...
Ischemic bowel. Yes it was caused from the LVAD. The team didn't mention that but I asked the GI doc about it and he agreed, said it was from the LVAD.

Anemia... the team didn't start him on an iron supplement. I did. Then told the team we started him on Fusion Plus (an iron supplement with a probiotic in it to keep from getting constipated) and they were fine with that. He's now 5 months post LVAD implant and has been on Fusion Plus for 3 months. His red count, hemoglobin, and hematocrit are all FINALLY in the normal range--anemia resolved. So do some research and ask questions, always, even if you feel like you're a thorn in their side, ask and keep on asking.

It's certainly a learning experience for all involved and sadly, we don't always get the outcome we want :/ But hang in there! We're all in this LVAD life together. ♡

acura's picture acura
My husband has infection -- heartmate 2 -- he is on 2 IV meds
Tue, 03/08/2016 - 9:03pm

Please email me at acura1234567@aol.com . My husband has had an Lvad for 4 years he was just put on a transplant list because of an infection that he is now at home taking to 2 IV medications three times a day and he now has a problem with his kidneys because of it . They took him off the transplant list because his kidneys are getting worse because of the two IV medications meropenem and another one the second one I don't know what to do either. They are going to meet with the team and we are going to talk Monday if they can install a heartware Lvad instead of his heartmate 2 .they don't know if that is an option so please if anyone knows of an answer or suggestion it would be greatly appreciated we are here in Boston. He goes to Tuftsin Boston but we do have a condo in Fort Lauderdale Florida so we could travel that way if there is an error of the options. Please help with my has been runs a bobcat Veda is always doing feels great but the test kill something different