colleen hTue, 06/21/2022 - 9:46AM
I want to thank everyone for looking and responding to my posts. It makes me feel better to know that I am not alone in this. Good news my husband is coming home today from the hospital, he was denied a rehab facility because he walked 160 ft. He is still very weak and I'm not gonna lie but I am very nervous and anxious about the next few months. I pray he does well and becomes independent. Thanks again for listening.
colleen hMon, 06/27/2022 - 3:45PM
Are they providing home care PT/OT at least. My husband came home and he could only walk about 25 feet with a walker and was in a wheelchair most of the time. He is now walking independently for 100 to 250 feet, only restricted by previous back problems. He drives and helps with basic housekeeping including cooking meals. We are leaving on Friday to go to France for 2 weeks !. Lord willing and with a lot of determination a lot is possible.
In reply to colleen h by Diane B.Janet C.
Thank you for sharingTue, 09/20/2022 - 5:53AM
My husband had his LVAD in June and then had to have a surprise additional surgery on his intestine. This second surgery was really hard on his body. He had two sepsis and was on the verge of dying. After spending two months in the ICU, he is finally able to walk. He currently could only walk 20 ft with a walker. It's inspirational to see your husband making the progress from 25 ft with a walker to walking independently for 100 to 250 feet. Doing basic housekeeping including cooking meals sound like such a wonderful thing. Thank you for sharing your story. Your story makes it possible for me to dream. Maybe, just maybe, one day, my husband could do that, too! Thank you again!!
In reply to Thank you for sharing by Janet C.Diane B.
Hi ColleenTue, 09/20/2022 - 1:18PM
Hang in there. Just one day at a time and one foot in front of the other. My husband is doing so well we were able to go to France in July with family for two weeks to celebrate our 50th. He did get tired at times because he could not pace himself while trying to keep up with grandchildren. Lesson learned.
It was his 2nd LVAD anniversary on August 26. His quality of life is so much better than the few months before OR. Our thoughts and prayers are with you. Diane
Diane B. how nice!Thu, 06/30/2022 - 10:13PM
That’ll be a great trip!
PTTue, 07/12/2022 - 10:01AM
In the US Medicare pays 100% if your doctor orders it.
In reply to PT by Michael H.ron l.
How do you navigate this site?Wed, 07/13/2022 - 7:21PM
How do you find latest posts? I get an email that won’t take me to the latest posts. I click on latest and it doesn’t take you to the latest. Is there an easier way? Cheers!
Driveline painMon, 08/15/2022 - 4:49AM
My husband got his LVAD on 6/3/22. He didnt go to rehab and they havent ordered pt yet. We came home after 64 days total stay at Duke University Hospital in NC on 6/24/22. He was sitting in a chair and leaned down to pick up a water bottle and felt like something popped and just a stabbing burning pain about a week after we got home. It just didnt go away and kept him in miserable pain until about a week ago. VAD team cardiologist on his clinic visit did a CT just to rule out any infection and everything was clear. He did say that could be a pull of scar tissue or just a little tear of fibrous tissue that is still healing. He is feeling better now. I keep trying to reassure him that he had a traumatic surgery and it's going to talk quite a awhile to heal. My husband is now 49 and has always been strong and active until last November. His brain still wants to do everything he could before right now haha and his body just isnt ready. Good luck hope he feels better soon! This is whole thing is very scary to me! My biggest fear since before his surgery is worrying about a driveline infection because that would be my fault I feel like. The nurses before we left the hospital tried to ease my fear but I still am scared to death everyday that something is gonna go wrong.
I am turning 60 this fall. I…Mon, 08/22/2022 - 1:59PM
I am turning 60 this fall. I had my LVAD installed on 5/10/19 at Brighams and Women hospital in Boston
it took a number of months till I could lift heavy objects I tried to lift objects over 10lbs I did pretty good. After 10 months I was pretty much healed.
With the driveline I had different types infection from bacterial to mold. My daughters did my dressing changes and did a excellent job. It doesn’t really matter how good you clean it It can get infections. Mine wore from working to soon probably. I had my surgery in may back to work by the end of July mainly paperwork and walking around the job site. If the guys caught me moving something they would take it away from me and chew me out.
I finally got put on the transplant list last June of 2021. I had to get the requirements met. My weight was 389 lbs in 2016 I got it down for LVAD surgery and I had to get down to 258 lbs BMI of 35 to get out of the transplant list and 5 yrs out clear of stage 4 throat cancer. I am now down to 229 lbs this where they wanted for the transplant surgery. According to the websites a male of my statue should be around 183 lbs that’s my ultimate goal . All you can do is hang on and do the best you can (one step at a time) and you will make it through this.
I have finally retire for now getting to weak to work with out help it’s hard for a person to ask for help to do a job they have done their lift. I am going back to work as soon I have healed enough after my surgery
hoping to get my new heart sometime soon seems like I have waited a long time
Ready for it
In reply to I am turning 60 this fall. I… by Chuck S.Charlie C.
WaitingMon, 08/29/2022 - 4:45PM
It can be a long haul waiting but hang in there. Eventually your turn will come. I was originally listed for transplant March of 2013. First LVAD placed May of 2015. Had two replacements (blood clots in device) and finally developed infection to move up the transplant list and transplanted July 2021. Trying to fight infection with a transplant was very difficult but finally came off antibiotics March 2022. Still not as functional as I was on the Lvad but improving every day. Godspeed along your journey
Re: Definitely not aloneWed, 09/21/2022 - 6:31PM
Hey there, I'm a VAD recipient as of September 2019.
If by rehab you mean a inpatient care facility, you probably lucked out in more than one way by not qualifying for that, but find out if your hospital or their parent company has a "cardiac rehab" program of monitored exercise. It should generally be covered by insurance (including Medicare), and it typically an hour or less a few times a week.
They don't always support VAD patients, but I've helped my VAD team train some groups including the rehab facility I just started a session at. ("Helped" he says - I was basically a spokesmodel. :) )
I had a really rough month at the start of it, but I was in much better shape by the end of that year and have made a lot of progress. I think coming home will probably help, if only because you can get enough sleep!
rehabMon, 10/03/2022 - 7:32AM
Good morning, My husband went back into the hospital 9/18/22 in a V-tach storm, his defibrillator went off over 70 times. Apparently due to fluid overload. Thankfully he survived and is due to discharge home. He received his Lvad 6/2/22 and only received at home P/T. I don't think he ever fully recovered from his surgery and only felt good for a brief time. Wondering if anyone else has a similar experience. Apparently, he is too well to do inpt P/T and at home just is not adequate. After discharge from home P/T he was never given a referral for any other P/T. Do pts go to outpatient p/t and if so where and what do they do there. We live on Long Island and go to Stony Brook Hospital and see the Lvad team there. But not sure if they are doing everything, they can for him. Dr says he has to confer with the team to see if he can do Cardiac P/T. Considering going for another opinion. Would appreciate any advice. Hope your all doing well
In reply to rehab by colleen h.Larry B.
I was home for about 10 mos…Mon, 10/10/2022 - 11:18AM
I was home for about 10 mos when I went into a VTac Storm. Wasn’t fun for sure and required another 10 days in the hospital where they eventually did a cardiac ablation which was another five hours on the table. That was five years ago. Been good to go ever since. I don’t understand why his team won’t refer hm for rehab. My team at Duke went out of their way to accommodate my needs. But, I did my own rehab at home and was back to playing golf at the 4 month mark.