Profile picture for user
Anonymous

Discouraged

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.

Profile picture for user
Sandy_barbour

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????????

Profile picture for user Hammy

In reply to by Sandy_barbour

Melisa H.

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.
Profile picture for user shortstp78

In reply to by Melisa H.

Juanita P.

I totally agree Melissa.  An EF above 35 to you can request they unhook.  Actually 35 EF and above they can't implant them.  Totally agree with the iron supplements, injections.  Unfortunately, I had GI bleed they couldn't find, 14 units of blood later, with hemoglobin 5-7.  But now that they found it, clamped the bleed, etc. I take over the counter iron x2 day.  Keeps hemoglobin up to 13.5 for now.  Only because of the reduction in greens.  However, I've been eating more greens and no problems with INR level.  I go for the gusto now.  Been down several roads, this one is the right avenue.  

Profile picture for user shortstp78

In reply to by Sandy_barbour

Juanita P.

I am so sorry to hear your husband back in nursing home.  Wth is the hospital doing or not doing?  Prayers for you...I really hate to hear individuals not doing well, and will say prayers for all of you.  Keep utilizing the support.  There has to be a support team, LCSW somewhere for individual support, pastor, etc.  I pray for a speedy recovery!!

Profile picture for user jimmy
jimmy s.

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

Profile picture for user
CambiataGN

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.

Profile picture for user Dorene_Martinez
Dorene M.

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.

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

Profile picture for user bhowie4865
barbara h.

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.

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
Profile picture for user Deb218

In reply to by Pat A.

Deborah C.

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.
Profile picture for user memerson2000@gmail.com

In reply to by Deborah C.

Mary E.

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.
Profile picture for user Pat300

In reply to by Mary E.

P D.

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.
Profile picture for user Jgibson

In reply to by P D.

Jessica G.

We always put the bag in the shower and have had no problems. We were told to take off the drive line dressing and use dial antibacterial soap. My dad has a heartmate II.
Profile picture for user Janetn

In reply to by Jessica G.

Janet N.

My husband is 8 weeks out of Surgery and about 6 weeks home. He has the HM3. We have been showering since the day he left the hospital. Our team stressed it is very important to keep the driveline entry site dry. There are shower guards manufactured for this purpose. But we have been using Press 'n' Seal (yes, the kitchen wrap) and some 3" medi-tape to secure it in place. This keeps the port site dry. We put his controller and batteries in the shower bag, and he takes it in the shower with him. Everything in the bag stays dry. The bag is well-constructed and they have thought of all the possibilities for water to seep in. My husband likes a long hot shower, about 30 minutes at a time. I stay in the bathroom room or very close while he's showering, just in case. We have a shower bench installed in our shower, so most of the time he sits on it and rests the bag on one side or the other. If your LVAD team isn't lettting your LVADer shower yet, ask if covering the line site would make it possible.
Profile picture for user jpeddicord

In reply to by Mary E.

Jan G.

Contact your VAD team and demand an answer and time table for showering. I have had a Heartmate III since November, 2016. Before I left the hospital and rehab, I was given instructions and told I could shower 2 weeks after I returned home. I too found 2 shower bags in one of the boxes when I returned home. I use first one and then the other because the foam on the shoulder strap has to have time to dry after you carry it into the shower with you. I have had no problems with the Heartmate III mechanically. It has worked beautifully and I am thrilled with it. I had been given 3 months to live before the LVAD. I am back to cleaning out my flower beds, canning veggies from the garden and doing most anything I want. In July, 2017, I flew to Denver and drove to Wyoming for a 2 week vacation with 5 girlfriends. I had a ball, no problems with altitude either.
Profile picture for user Cole@58-

In reply to by Jan G.

Barbara Cole C.

My Lvad coordinators will not allow me to shower yet after 3 months of having my LVAD. They explained that the exit site for my drive line has not closed completely. The chance of getting it wet they said is not good, so they'd like me to wait a bit longer before receiving my shower bag to shower.
Profile picture for user jasonfinney317

In reply to by Barbara Cole C.

Jason F.

My son (12 y/o) got his LVAD on 12/31/2017, maybe 2 weeks later they had the Occupational Therapist in helping him take a shower with the shower bag. We keep the exit site covered with the bandage when showering and then after the shower we change the dressing. We usually go every other day to take a shower and change the dressing. I don't understand what the Coordinator's thinking is, if the site has not healed in 3 months what are the odds that i will completely heal? I hope this helped.
Profile picture for user CareBear

In reply to by Jan G.

Stephen S.

Good for you! On your positive frame of mind, its always encouraging to hear about people like you who forge ahead with inspiring determination to remain happy and pursue happiness no matter what life throws their way! 

Stephen from Mich

Profile picture for user elatiolais

In reply to by Mary E.

Elizabeth L.

You didn’t have to go thru class before he went home ? I had to go thru weekly classes before he left the hospital along with changing his dressing. His LVAD has a shower pack although while he’s still in the hospital they haven’t used it yet which is a little concerning but he will hopefully be using it once he gets home . 

Profile picture for user Lawnman

In reply to by Deborah C.

Chris G.

My husband has an lvad and is doing pretty good, we also live in fl. We live in Port St. Lucie fl and was Just wondering if you were close Jennifer
Profile picture for user debrakasson@gmail.com

In reply to by Deborah C.

Debra K.

Hi Deborah,

Before my lvad I showered every morning. I swam laps at the public pool. We live on the river. Lots of fishing, etc. Not anymore. I may sound lazy. However, not the case. Since implant my body has become worn out. Joint pain from arthritis. It causing extreme pain to carry the batteries. Plus I get out of breathe very easily. Its exhausting getting ready for a shower. My life has been watching everyone else live. I sit and watch. I don't see a light at the end of the tunnel.

Profile picture for user helpinghand
N B.

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.
Profile picture for user Dpatters
Diane P.

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.
Profile picture for user Lucy2

In reply to by Diane P.

Terri R.

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)
Profile picture for user Lucy2

In reply to by Diane P.

Terri R.

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)
Profile picture for user elatiolais

In reply to by Diane P.

Elizabeth L.

I agree with you 100%! They sold the LVAD as a Cinderella story and it’s been nothing but a nightmare . It will be 4 months on April 6th since he first went into the hospital with end stage heart failure , liver and Renal failure . Now he’s developed Candida auris. Maybe you’re familiar with it ? It’s been all over the news recently . 

Profile picture for user Hammy
Melisa H.

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. ♡
Profile picture for user elatiolais

In reply to by Melisa H.

Elizabeth L.

Thank you for your post ! Yes you are on point ! I m in healthcare as well and it seems the more you ask questions the more they do get frustrated with you . But it’s our Job to ask questions ! They pray on caregivers and family members that don’t ask questions . It’s so frustrating and disappointing. 

Profile picture for user acura
Pat A.

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

I hope your husband is doing better. I have heard of patients that have heart and kidney transplants in the same surgery. I do know that once he received a new heart he will be able to undergo surgery for a kidney transplant because he will have a strong heart. I had a Heartmate II and had the LVAD for 17 months before I was blessed with a 20 year old heart. I was a 1b but was bumped up to 1a status due to avdriveline infection. I had home IV antibiotics for 3 weeks then pill form antibiotics 4 times a day. As I said I was blessed to have received a heart so quickly as I am O+ and over 6’ tall. I was getting equally frustrated and starting to think it would be years before I would get a heart. Be patient and when you don’t expect a heart you’ll get that phone call that will change your life forever as it happened to me. Your husband will be in my prayers and I truly hope he will get that phone call soon saying they have a heart and kidney. God Bless

Profile picture for user debrakasson@gmail.com
Debra K.

Hi Pat A,

I've had my lvad since April 1st 2016. I've been lucky to have had no problems as far as infections. However,  I have had issues with my body breaking. My right knee needs to be fixed, which no doctor will touch me due to the lvad. My shoulders, neck, back and hips cause tremendous pain. I'm unable to carry the batteries and controller to go anywhere and dread carrying them when I have to. I'm confined to the house and can't go everywhere within due to my leash(cord) twisting and becoming unplugged. I absolutely hate this. Yes, I have life but unable to live it! I'm 60 years old and recovering now from a fall after becoming dizzy on July 4th which resulted in a brain bleed. I'm doing alright now. However, my partner, Kenny and I live on the river. Ours lives revolved around fishing and water sports. I get to sit in the back yard and watch everybody else having fun. I'm still not listed for a heart and my team haven't given me a reason why. I feel that they will tell me I'm not bridge to transplant anymore and have to spend the rest of my days like this. Not sure I will take that very well. I pray all have better days than I do. God bless all my fellow lvad warriors.

Profile picture for user Mariza
Mariza M.

I've had my LVAD II in August 2015 and had to change it in Dec 2015 due to blood clots in the pump. Till beginning 2017 life was very difficult for me, with several episodes of GI bleeding/transfusions and a short term stroke (ITS). During this time I used to have iron complementation for anemia. In the last two years,  my physician stopped iron complementation and, although having a limited life due to the weight of taking the LVAD batteries/conductor, the necessity of having a caregiver to help in bath and change dressing, I feel quite good. I returned working, mainly home office (I am a scientific researcher), driving, and going out with my husband, friends, and grandchildren. Everything is made in a very slower rhythm than before, but thanks God I am alive and able to see my grandchildren grow up. It is hard to support the worst phase but we have to appreciate what life still holds for us.

All the best for everybody

Mariza

From Brazil

Profile picture for user Melis@1422
Melissa G.

My son age 32 had his lvad for 10 months. He had 2 good months. He was so careful with dressing changes. He lived with me so I usually did them. It was one problem after another. Mostly driveline infections. He noticed 10 months in that he had a blister like opening near his site. Went to hospital and found out it was a pocket of staph.  It had traveled through his bloodstream.  He was in rehab 4months in a nursing home. He had to be on continuous IV antibiotics. He finally came home. This disease and the LVAD became more than he could handle. Deep depression and anxiety led him to turn off his pump while we all slept . I lost my beloved 32 year old son . I am devastated and heartbroken . I cry all the time. They should have made this a safer piece of equipment before using it on human beings. All I hear about is driveline infection, staph and mrsa. He knew his days were limited so he wanted to go on his own terms.I lost my beloved son and my life will never be the same. He couldn't go on and I have to go on without him. I would say think very hard before you get this monster implanted. It caused us nothing but grief and heartache. Michael's mom Forever 32 I loved my son with all my heart. He was my world. I'm so sorry he had to go through so much horrible pain and suffering. He will live forever in my heart. Love you Michael 0

Profile picture for user Melis@1422
Melissa G.

My son age 32 had his lvad for 10 months. He had 2 good months. He was so careful with dressing changes. He lived with me so I usually did them. It was one problem after another. Mostly driveline infections. He noticed 10 months in that he had a blister like opening near his site. Went to hospital and found out it was a pocket of staph.  It had traveled through his bloodstream.  He was in rehab 4months in a nursing home. He had to be on continuous IV antibiotics. He finally came home. This disease and the LVAD became more than he could handle. Deep depression and anxiety led him to turn off his pump while we all slept . I lost my beloved 32 year old son . I am devastated and heartbroken . I cry all the time. They should have made this a safer piece of equipment before using it on human beings. All I hear about is driveline infection, staph and mrsa. He knew his days were limited so he wanted to go on his own terms.I lost my beloved son and my life will never be the same. He couldn't go on and I have to go on without him. I would say think very hard before you get this monster implanted. It caused us nothing but grief and heartache. Michael's mom Forever 32 I loved my son with all my heart. He was my world. I'm so sorry he had to go through so much horrible pain and suffering. He will live forever in my heart. Love you Michael 

Profile picture for user snowflakesw

In reply to by Melissa G.

Susan W.

The Lvad comes with many changes in our lives. Not all good. My husband had to have his first Lvad replaced due to blood clot in the pump. Two strokes and two brain bleeds later . Second Lvad placed . Struggling to find the write words. Some right side weaknesses. But for the most part came back remarkably. Still wasn’t easy on either of us . We are now back on the transplant list. I feel like it’s for ever waiting for that phone call . He still can’t take a shower after two year. Can’t be cleared due to drive line never healing. It’s always something. I’m so sorry to hear about your son . Depression is real and we do understand. I wish you well .. take care and it does help to vent a little. God bless. Sue from Michigan 

Profile picture for user zawodzinskic

In reply to by Melissa G.

Catherine Z.

  Hi,    I am so very sorry for your loss.  I just lost my son, 38 to a cardiac arrest,  I didn't have the chance to try and save him.  I believe that is what he would have wanted, to leave this world strong.  The loss is sometimes unbearable, but I believe that he is moving forward in another life, starting a new adventure.  (my son loved to travel)  He will live forever in our hearts and minds.  I am going to put together a video of friends, family, telling stories about Pete (my son) so that he will live on generations from now.  

I have a little book for you to read if you are open to it.  "How to Live When a Loved One Dies".  Author Thich Nhat Hanh.  

"Grief is love with no where to go"  is now my mantra.   I look to give my love to others.  I will keep you in my meditations and prayers, you are not alone.   Cathy

 

Profile picture for user Rosa Avey
Rosa A.

My friend pray. My husband had six surgeries. Before the lvad. And it will be a year. But we have to be strong. I have a great spiritual family and we are Jehovah's witnesses. So I have alot of Faith. And I make it enjoyable taking care of him. I take him for rides when he feels good.  But having faith and praying for strength and staying busy really helps me. I will keep you in my prayers. And the account is in his name. My name is rosa