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Cat S. Caregiver

Where are the recent posts, I am scared!!

Mon, 03/19/2018 - 5:38PM
Hi, hello, good afternoon! My husband is jumping through the hoops to get qualified for the Heartmate II. We're just about done and meeting with the LVAD surgeon in just a week. I don't see many recent posts and it concerns me dearly. My husband is not a bridge to transplant due to his age (73) and it seems that many of the older posts that I have read talks about all the complications and in some instances (death) rather than the situations where the LVAD has given the recipient a quality of life and it's been beneficial. Is there anyone that can share with me something good that has resulted in the LVAD surgery? I am scared!
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Ruth or Gary L.

Tue, 04/03/2018 - 7:20PM
My husband became terribly allergic to the clora prep that is in the drive line kit when you change your bandage . That cause itching and a terrible rash. Check it out.
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Chiplon W.

Mon, 04/09/2018 - 1:35PM
I became very sensitive to the sticks in the packets. So, my physician, Dr. Skipper, had my wife to switch to the liquid Hibiclens and use qtip swabs to clean the areas. Done fantastic and have had no aftereffects from the treatment. I understand that there are several people that can't tolerate the swabs. Just have to use an alternative cleaner.
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Myriam T.

Mon, 04/09/2018 - 5:59PM
I have had me LVAD since June of 2012. I was also very allergic to clora prep. I have been using IODINE packets with 3 swabs and they work perfectly.
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Woodie M.

Mon, 04/02/2018 - 12:53PM
Hi Pat, LVAD as of 10/11/2017. CHS and only 10% pumping. Bluntly told that it was either LVAD or die within 2 months and be in a whole lot of pain. I went through the process of getting lvad and did get one. Now I'm jumping through the process again to be listed for transplant (I was a smoker until attack so you have to wait 6 months and go through the process again) First and foremost, get to know the clinic, tell them everything, they've heard it before and usually won't yell at you (a stern scolding for me now and then but I'm Scottish and male so it's bound to happen) get to know FB support groups (LVAD WARRIORS, and the misfit one too) see if there is a local FB support group for your hospital. And of course here. always good to know that you are not alone. AND YOU AS CAREGIVER need support too. we as your patients rely on you more than we know sometimes. the good the bad and the ugly. The Good, I'm alive and on the green side. Getting stronger every day and looking so forward to RVing, checking in with LVAD clinics and first responders when stopped. Might even take trip to Hawaii since I've never been there. You shall mend hopefully. The bad, it hurts like hell until you heal. You have a 4lb. ball and chain that you HAVE to remember it is there (like stepping away from the sink while brushing your teeth) some people have trouble sleeping, I just tuck mine behind my back and just relax. Lucky people sleep at least 4 to 5 hours at a clip. get a book, it helps until the next clip. you explain the weird fanny pack hanging off you and the looks you get when you say that the wire goes into you body...oh my. you can't go underwater diving or kayaking (precautions) but you find other hobbies to do. The ugly, the worrying that something "might" happen. there is so many better things in life so stop worrying about the ugly and just enjoy the time you have. I'm sure there is so much more but it does get overwhelming that you think your head is exploding. reach out and you'll be surprised just how many of us will get back to you. I hope along my travels to meet other LVADers and sit around a campfire and shoot the s&^t
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Diane Z.

Mon, 04/02/2018 - 10:03PM
Lots who have gone through it with our spouse or ourselves.... both if my sons are MD’s, there was a hospital in our hometown, Little Rock, who had been in since the beginning, my husband at 5 bypasses and later a stent, but we never heard of a LVAD until last January while visiting in Tampa.... Even today, there are so many resources out there... my blog, is our day by day from before our LVAD journey, hubby is not transplant eligible, has a heartmate 3 ZeeLarry LVAD https://zeelarry.blogspot.com I have linked tips and other resources on it.... Prayers.. Diane Ziemski, caregiver for LVADer....
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Joyce T.

Tue, 04/03/2018 - 4:01PM
My husband was 69 when he got his Lvad, before that he was very weak and sick. I did not think he would survive the surgery, but thank god he did. I’m sure you and your husband are at that place right now. But I tell you trying to get better with the LVAD is better than the alternative. This may be tough to here but wouldn’t you rather try for s better life and not have to watch your husband struggle with a weak heart. I am glad we did this , Glen as good and bad days. More good than bad. He does not like carting that bag around, but he does. I know you are scared but it sounds like the LVAD is your only hope The doctors and nurses are the best. If you want to talk. Please call us. We live in Las Vegas. My number is 702-722-2220. You call me whenever you want. We had a man by the name of Rick and his lovely wife Susie that came to our room everyday to talk to us and they explained so much to us Glen and I would like to be your Rick and Susan. God bless you both. Joyce
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Janet N.

Tue, 04/10/2018 - 3:50PM
Our NP suggested we alternate the clora prep with betadine when we do our weekly dressing changes. It seems to help. The betadine won't come in your sterile kit though, so be sure you handle it properly when doing a dressing change.
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Janet N.

Tue, 04/10/2018 - 3:56PM
Cat, It's going to take time for your husband to heal, depending (in my opinion) on how active he was prior to the surgery. My husband's congestive heart failure robbed him of his health for about a year so according to our NP his recovery is going to be slow. We have recently met another LVAD patient with a Heartmate II who is 73 or 74, and his heart failure was more sudden, so he had been active right up to the time of his surgery. He looks great, and he's leaving the hospital today (his 12th day after surgery). I think every patient's response is going to be very individual. Take one day at a time, and follow medical advice. I find that if we stick to the NP and doctor's recommendations, they have an easier time figuring out a solution to any problem that may come up.
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Cat S.

Wed, 04/18/2018 - 6:14PM
This group is amazing and I appreciate all of the responses both good and bad. My husband Ed is having the LVAD surgery on 4/24/18. It seems like the idea of the surgery was just last week and now that it's a reality we are just trying to stay positive about it. Ed has always been a"glass half full" kind of man and we have a saying that"soap is to the body as laughter is to rhe soul". We live that attitude every day. Our surgeon is a true empath and we have much confidence in him and the team. I suppose it's just the not knowing truly what to expect until it happens. It's as if we're on a fence, scared *hitless on one side and anticipating a better life on the other. I can't thank you guys enough for all the responses and I will keep you updated on the progress. - Cat and Ed
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norrris m.

Mon, 05/27/2019 - 12:23PM

Sorry that it took me so long to respond. I've worn my HMII since 13 June 2016. Yep my 3rd birthday is coming up. The caregiver is key to infections. If you maintain a sterile field and both wear masks plus follow the lvad nurse's instructions. I would do the operation again and would recommend it without reservation. It is a tough procedure and recovery may be slow, but don't despair. I've had no infection problems. 

 

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Mariza M.

Mon, 05/27/2019 - 12:40PM

I do agree with you. I have my HMII for almost 4 years (august 2015) and although I have had so many intercorrences in the first two years, Infection was not the case. I have a caregiver to help me for bath and to perform the dressing.

All the best

Mariza

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Pam J.

Tue, 12/24/2019 - 9:09AM

Cat, I got involved catching up on people’s stories this morning and am wondering how yours is going. I am my husband’s caretaker although he is pretty self sufficient. What’s happening? I’m here for support if I can be!

~ Pam

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Pam J.

Tue, 12/24/2019 - 9:09AM

Cat, I got involved catching up on people’s stories this morning and am wondering how yours is going. I am my husband’s caretaker although he is pretty self sufficient. What’s happening? I’m here for support if I can be!

~ Pam

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Kevin S.

Mon, 04/23/2018 - 1:25AM
Although my LVAD implant was a bridge to transplant I have made several destination friends in the 8 plus years since my implant. Our longest destination at Methodist in Indy is nearing nine years out and she's doing well, another gentleman is right at 8 years and running strong. Life is precious, Extra life even more so, not all implants have long and happy endings, it's a risk no different than any major surgery, if the LVAD is the only chance to extend life it's a no brainier in my opinion, should this become my only option in the future i'd go for it again knowing all the risks involved.
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Brittney M.

Mon, 03/22/2021 - 3:55PM

Have you received your transplant yet? My mom, who has the LVAD, just finished all her bloodwork and is in the homestretch of essentially getting on the list. We had to wait for her to get her BMI down, and now it’s in an ideal place.She’s had her LVAD since December 2019. She was originally destination, but given how well she’s done they have moved her to bridge to transplant.

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William W.

Mon, 05/28/2018 - 1:40PM
Cat, M name is Bill Waddle and I am just 100 days out from the implant. I have the heartmate III. I was admitted to the Richmond VA on the 7 Feb 2018. I went in with a 20% ejection number and in bad shape. I had lost 42 pounds and breathing was difficult too. I actually did not think I was that bad. Well Doc talked to me for a few minutes and said I was symptomatic could I tell him what was going on. After I told him he said I am admitting you right now. I was admitted and then had a surgery on a hernia that had happened due to the condition and medicines, this is why I thought I was here in the first place. After the one surgery I too had to go thru the hoops it wasn't that hard. My LVAD coordinator, Lisa, god love her, looked at me in the midst of it all and said "Bill I have people come to me and want the LVAD yesterday, you come to me and have nothing but questions, I would rather give it to you". I had a DNR/DNA on me but that had to be dealt with. We are putting a machine in you to keep you alive. With that said and the 6 months to a year to live I had to make a decision. They fixed my Aorta and installed the LVAD. Since then I have gained 20lbs and my quality of life is there too. Yes I continue to have gout attacks and my blood does not want to get thin enough. I have been rototilling and planting a garden. Home improvement and everything else too. I wont tell you that its all good, for me yes, but others in the hospital that went in before me were still there. I am riding my motorcycle again and can eat what I want. The little things in life, I mean the little things, are much appreciated again. I live by myself and do just peachy. Having someone there, you, should make it that much easier. If you would like to get ahold of my Facebook account is Bill Waddle. I would love to give back what I can to those who want it. Hope this has helped and wish you and yours the best, Bill
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William W.

Mon, 05/28/2018 - 1:45PM
Cat, My name is Bill Waddle and I am just 100 days out from the implant. I have the heartmate III. I was admitted to the Richmond VA on the 7 Feb 2018. I went in with a 20% ejection number and in bad shape. I had lost 42 pounds and breathing was difficult too. I actually did not think I was that bad. Well Doc talked to me for a few minutes and said I was symptomatic could I tell him what was going on. After I told him he said I am admitting you right now. I was admitted and then had a surgery on a hernia that had happened due to the condition and medicines, this is why I thought I was here in the first place. After the one surgery I too had to go thru the hoops it wasn't that hard. My LVAD coordinator, Lisa, god love her, looked at me in the midst of it all and said "Bill I have people come to me and want the LVAD yesterday, you come to me and have nothing but questions, I would rather give it to you". I had a DNR/DNA on me but that had to be dealt with. We are putting a machine in you to keep you alive. With that said and the 6 months to a year to live I had to make a decision. They fixed my Aorta and installed the LVAD. Since then I have gained 20lbs and my quality of life is there too. Yes I continue to have gout attacks and my blood does not want to get thin enough. I have been rototilling and planting a garden. Home improvement and everything else too. I wont tell you that its all good, for me yes, but others in the hospital that went in before me were still there. I am riding my motorcycle again and can eat what I want. The little things in life, I mean the little things, are much appreciated again. I live by myself and do just peachy. Having someone there, you, should make it that much easier. If you would like to get ahold of my Facebook account is Bill Waddle. I would love to give back what I can to those who want it. Hope this has helped and wish you and yours the best, Bill
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Jose N.

Tue, 05/29/2018 - 1:25PM
Hi Cat. Like most here, I don't check in very often, and I forgot I had an account here for a long time. Anyway, I can tell you that the recovery process is not as hard as it seems. I had mine in 2014 and before I could not step up on a curb or get off the couch. After I shed over 60 pounds in water weight and could walk within 2 days. Now I'll admit, I'm 34 this year so I did have youth on my side but the recovery process is fairly simple. Mine, I was only restricted from bending over, sleeping on my side or driving (which I didn't worry about since I didn't get my licence until last year). If his would be the same as mine, they start off a bit, I believe 2 or 3 weeks with light exercise like walking as far as you can then increase it gently as you heal. He won't be able to shower until the incision heals and to get into bed he will have to have help. For me it was sit on the bed, swing my legs up, cross my arms and lie down. No pulling or pushing yourself up or down until you're cleared by the surgeon. I hope he can get it.
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Susan P.

Tue, 05/29/2018 - 5:01PM
My Husband is having the LVAD fitted in the next two weeks and I’m looking for a discreet back pack for him to wear when he goes back to work as having the batteries stored by his side might restrict his movements. Anyone know of any websites please?
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Jose N.

Tue, 05/29/2018 - 7:12PM
A backpack might not be his best option. The wires are too short to reach around you, perhaps a fanny pack could be an option until you find something to use? I've heart tactical undershirts are an option or if you can sew, one member here is offering patters for a vest type sling.
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Ralph F.

Mon, 06/04/2018 - 11:54AM
Hi there, I have had the HM III , actually on the second one, for 4 plus years now. I am an avid fly fisher and needed something lighter than a back pack an had more body support than the straps on the shoulders. So I searched for a fanny pack with hip support belt and shoulder straps. The shoulder straps did not suit me so Charolette took my old padded shoulder straps and sewed then in place of the others. Comfy! The fanny pack, like the shower bag is water resistant and i had an old black shoulder bag with a bad zipper. So we cut out tbe controller pocket and battery pockets and incorporated that into the new fanny pack. The whole thing is smaller than a back pack and when I am out in the water with fly rod in hand, I now do not tire from an ill fitting pack. God bless and remember, we own this marvel of life, it does not own us. Grin Ralph Fullenwider in Oklahoma
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Brenton L.

Fri, 06/08/2018 - 10:50AM
I'm Brent from the LVAD Gear company and we make a back pack that I feel confident will work. We also have a 100% guarantee if he don't like it. We also have shirts, vests, and an assortment of other items to help make LVAD life easier. Check out the website, if you have questions contact me from there. I don't check this very often.
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Joanne W.

Mon, 05/27/2019 - 10:23PM

Susan P/  When receiving his equipment there should be a bag to use to carry  on his belt. We have a Heartmate 3 came with our equipment.

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Joanne W.

Mon, 05/27/2019 - 10:24PM

Susan P/  When receiving his equipment there should be a bag to use to carry  on his belt. We have a Heartmate 3 came with our equipment.

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ron l.

Fri, 06/01/2018 - 11:15PM
I am 70 yrs. old (male) and in early stages of chf. Still active and exercise. No real symptoms to speak of yet. But I know they're coming. It's been 11 yrs. since I had a massive HA. The advancements in technology and medicine are coming at breakneck speed. I followed the progress of a gentleman in MN who received a HM 2 @ age 71 and had it for 12 yrs. A young lady in her late 30s, I want to say, is getting close to 9 yrs. She's decided against a transplant because of her QOL, and also because advances are coming so fast. She is an LVAD nurse. You can google "20 yrs. of the Heartmate 2".
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Willie A.

Tue, 08/14/2018 - 6:55PM
I would think changing a dressing everyday will risk a drive line infection based on the fact your are exposing the site everyday to germs. No it is not a good idea to change dressing each day. I am sorry to hear about your infections and the thought of another one scare you, and maybe you are over reacting. Do your VAD team know that you are dressing changing everyday? Unless you have situation that warrant a dressing change daily until the problem is resolved; dressing change on a daily basis is not necessary.
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Brian F.

Mon, 09/03/2018 - 3:01PM

Cat,

You are not alone, I was terrified of making a change so grand.  I had accepted the fact that I was done and was ready to say adios to my family and to move on the next big thing.  

Once i heard about the LVAD I was encouraged but had so many unanswered questions.  Everyone was great and so positive, from patients to doctors, nurses etc. It was a tough decision for me but I’m so happy I chose to do it.  All of my biggest fears turned out to be the smallest concerns in the end.  I returned to a full....ish life with my family, grandkids, and even returned to work.  I had a great support system in my wife and kids for appts, therapy etc.  Eventually did the dressing changes myself.  Be not afraid for I am with you.  

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mike d.

Mon, 09/10/2018 - 6:02PM

hello madem x. my name is mike davenport i live in elgin il. have the alvad for 2 plus years no problems. i change the dressing thats the wet  dressing chge, onca a week. soak da shower head in a week salution of bleach before da shower to keep the pugs hideing the head clean. hows that exercising program cumming along? 20 min every day? i got it. do not panic about the device in the chest. its a life saver due to modern science. watch out for the drive line, this is were infection has a field day. keep soaking the shower head and xit will be o.k. some people like to just take there shower no problem,,,really not smart. you will hear about the war stories of other people and the drive line issues.  keep YOURS clean and don't forget da drugs to keep it moving if you know what i mean. i'am trying to get a transplant too, lots of re buffing, still waiting to just get on the list. will hear somthing this november to see whats up with that. keep praying and beinf healthy to you or  da other. i'am a drunk to bine on the aa progran 35 years and no need to drink. figure that out. i'am in the phone book . have a good day. me.

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Duane W.

Tue, 09/11/2018 - 10:45PM

Its been 3 yrs since i had to have a Lvad. am on my 2nd one something happen to first one in 12/5/2016.  I live as if i don't have a Lvad, I work my business full time every day. I do the worst Job  you can think of having a Lvad. I do septic business am around raw sewage everyday. I have not had a infection yet. March of 2019 will be 4 yrs. God willing. LIVING AND LOVING LIFE. Be Happy Don't Worry.:)

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MITCHELL S.

Mon, 10/15/2018 - 6:05PM

I don't know if this helps any,  but i had an LVAD implanted August 24th 2018. (7 WEEKS AGO!)  I was out of the hospital in 12 days then went to physical rehab for 12 days where I got stronger, I'm now home and recovery is a slow process but about the only help I need is a car ride and bandage changes. At the time of surgery I'm 61 years old. I was in severe heart failure and I was close to death.

I was taking an IV drug called milrinone which is only a palliative solution to heart failure. I really have been lucky I haven't suffered any of the normal problems from the surgery and I actually just got up and kept going. everyday I feel a little stronger.  They told me it's a 6 months recovery process,  it is a major surgery (in that it's open heart) but all I can say to you is: what are your alternatives?

 

My alternatives were dialysis and then die at home in front of my family, (I have teenagers and a 6 year old grandson living with us) so it was a really easy decision for me. Being offered several more years when I was looking at 3 months.... It's a no-brainer.

 

I realize it's not the same for everyone but life is a precious gift

In my case the LVAD saved my life,C and I have no regrets seven weeks after surgery.

It was worth every inconvenience I went through and it's worth all the recovery that I'm still experiencing, which is mostly just regaining stamina and strength. My blood flow has increased tremendously, my color is good, people tell me I look well.

So my advice is (and this is just what I would do, AND DID DO) if they will give him one he should take it. Itt will most likely save his life and buy him 2 to 7 , 10 years maybe. The doctors who do this are geniuses. They've been doing it for years and they know how to mitigate the risk. Hope this helps you come to the best decision for you and him

If you want to talk my phone number is 864 202 0076.

 

 

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Cindy R.

Wed, 10/17/2018 - 12:06PM
Hello, I wanted to respond to you and tell you a little about myself. When I was 49, I was diagnosed with end stage heart failure. After many tests, it was decided that a normal virus attacked my heart. I was a smoker, was going through menopause and had justified all my heart failure symptoms to one or the other. When I was diagnosed, I was first started on mellranone, and the mention of an lvad was discussed for the future. Then my heart gave out, and by the time I remember anything, I had not only an LVAD but a RVAD as well. I now realize that it was a blessing to not know and worry about an LVAD implant, just wake up and it is there. Like anything, you get used to things after awhile, and you get quicker in the maintenance. I had a 3 month old granddaughter when I first got sick, but thanks to the lvad, she will be 9 this month, plus I have 2 other grandkids, and have seen both of our kids get married. For me, life improved greatly after the LVAD. I decided not to stay on the transplant list for reasons I won't get into now. The VAD Coordinators (who will become your best friends in the whole world), warn you about infection, and said that once you get an infection, that you will always have an infection. I heard it, but after time got lazy, and instead of cleaning every day, I went to every other day, and once in awhile, when life got in the way, I let my cleanings go even longer. In addition, I have sensitive skin and the itching was incredible. I would scratch, I would squeeze, I would do anything I could to relieve the itching. After 4 years with the lvad, I was hospitalized with an infection that was caught by routine, quarterly blood tests. I felt fine, and didn't quite understand why I was hospitalized. I was let out after about a week, and away I went, not even thinking that I had had an infection, so now it will cling to the lvad, and never go away. At the 7 year mark with my lvad, I experienced pain, no energy. I knew something was wrong, and I met all the criteria to be admitted except the fever of 101. Time took care of that, and I continued to experience pain while they treated the exact same infection of 3 years earlier. In the end, after weeks of being hospitalized, I had surgery where they replaced the entire system. They had found a newly detected, completely different virus on other parts of the lvad that were removed. I know that was painfully long, but it is important for you to really understand about infection. You must clean every single day until they tell you that it can be done every other day. After that, no exceptions, no too tired, do it. An lvad patient's 2 main problems that can kill them quickly are infection and INR. If you want to live as long as you can, take extra care of those 2 things, and I believe you will have success. Life is so good, and I wish you and yours as much as possible. Cindy my favorite saying: Fear lasts a short time....regret lasts forever
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Anonymous

Wed, 10/17/2018 - 1:02PM

when I was 69 my cancer returned; when I was 70 the chemo put my cancer into remission, but destroyed my heart.  Because I had genetic low blood pressure, most heart medicines could not be used.  My ejection fraction fell to 10.  I was told I had a choice LVAD or die.  I chose to live.  I was also told by several different doctors that because my name was not Dick Cheney, I was too old for a heart transplant.  He got his at 71 after 5 years with an LVAD.  They started my surgery on ground hog's day and finished up the next morning.  It took a while to get my strength and weight back, but I did.  I have no regrets and live a full life with domestic and international travel. When I go through security I usually carry my equipment in an ORVIS fish vest.  One surprise was that I had to go through security to get into Arlington National Cemetery.  I had to partially disrobe for the pat down.  They were very apologetic, but had to do what they had to do.  Otherwise, I favor the LVAD shirts available from Florence on Etsy, or if the weather is cool, the T shaped vest which my wife makes from a pattern modified from the MyLVAD website.  I tried a bunch of other shirts and vests but for me these were the best.

I was warned about infections and their permanency.  I wasn't warned about sweat.  One day I rototilled the garden and worked up a big sweat.  I didn't immediately take a shower and put on a new dressing.  The next day I had an infection.

My VAD team is incredible.  They're almost like family.

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Joyce T.

Wed, 10/17/2018 - 2:21PM

Hi my name is Joyce  My husband has the heartmate two , he has had his lvad for three years now, he two is two old for a transplant.  He feel great most days, he is much better since his lvad.  I think I prefer he not get a transplant since he is doing so well  Glen is 70 and overweight, other wise he is very compliant with his meds and keeping track of all his vitals as well as the numbers on his controller.  That is the only thing I would say that makes having an LVAD different than having a normal heart and the fact that you constantly have this bag hanging on you all day. The batteries are heavy but there are LVAD best and special clothing you can buy to help distribute the weight.  I know it sounds like a really tough surgery and it will be but remember these doctors do these everyday and they are ready for anything and everything   You will feel 100 percent better after it is all over. Glen got his lvad in saltlake city at the university hospital  they are the best.  Good luck and we will say a prayer for you and your family. It is in gods hand 

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Joyce T.

Wed, 10/17/2018 - 2:21PM

Hi my name is Joyce  My husband has the heartmate two , he has had his lvad for three years now, he two is two old for a transplant.  He feel great most days, he is much better since his lvad.  I think I prefer he not get a transplant since he is doing so well  Glen is 70 and overweight, other wise he is very compliant with his meds and keeping track of all his vitals as well as the numbers on his controller.  That is the only thing I would say that makes having an LVAD different than having a normal heart and the fact that you constantly have this bag hanging on you all day. The batteries are heavy but there are LVAD best and special clothing you can buy to help distribute the weight.  I know it sounds like a really tough surgery and it will be but remember these doctors do these everyday and they are ready for anything and everything   You will feel 100 percent better after it is all over. Glen got his lvad in saltlake city at the university hospital  they are the best.  Good luck and we will say a prayer for you and your family. It is in gods hand 

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Kay D.

Tue, 10/23/2018 - 10:53AM
All was ok until I went to chiropractor for vehicle accident . I had some bleeding issues and called Iva team. They told me I was 2nd person that week with same problem. So be careful I have had my lvad 2 1/2 years. I try to always be on the bright side, and have visited and talked to new ivad patients. Only ivad patients know what it is like.
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Kay D.

Tue, 10/23/2018 - 10:53AM
All was ok until I went to chiropractor for vehicle accident . I had some bleeding issues and called Iva team. They told me I was 2nd person that week with same problem. So be careful I have had my lvad 2 1/2 years. I try to always be on the bright side, and have visited and talked to new ivad patients. Only ivad patients know what it is like.
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Sherman T.

Fri, 10/26/2018 - 7:58PM

Transplant /LVAD Program

My name Sherman, I am 16 months out from my LVAD to transplant.  Yes lots to process.   I am not sure what stage you’re at now.   I was able to get to normal day to day routine. Feeding my dog, washing may car, clean my house, walking 1/2 mile a day. One part was hard for me was carrying my bag and batteries.  No problem taken a shower, cover my drive lines.   A nurse friend changed my drive line covering.  I let my battery low 3 different times over eight hours.  But it was better way of life.

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Reiss T.

Mon, 10/29/2018 - 11:12AM

I understand, but I am 78 years old and just celebrated my 8th re-birthday last month and life is good. Am enjoying travel, including two weeks in Italy and a road trip scross the U.S., grandkids and life in general. Having faith and a sense of purpose helps.

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Karen T.

Mon, 10/29/2018 - 12:36PM

Hi Cat, 

I'm a caregiver to my 72 year old husband who had the LVAD surgery Sept 5 of this year. It is normal to be scared but in my situation it was either not having my husband around or having the surgery. He was in the hospital a total of 11 days and was discharged, he did really good. He has issues with balance and light headed and we're working on that to see what's causing it with the doctors but his overall health has improved tremendously and I thank God and his team of Drs everyday. It's only been 7 weeks since surgery but he feels better now then he has in a year.

Our doctors told us if we weren't scared then we weren't ready for this surgery. Good luck and keep us posted on his progress and as a caregiver I'll be praying for you, your job is going to be vital to his recovery and don't be afraid to ask family and friends for help you will need it!!

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mike d.

Mon, 10/29/2018 - 6:33PM

yo.   there is a criteria for the procedure. i would say that since he (he?) IS getting the avad it takes time for this to happen. he has the teasting heart echocardigrams that you have seen.. ejection fractions with his heart. this could help enhance his chance of a heart trans plant. than you have the chemistery side and o my god, its like being on a nother planet let alone a name and a face. i have the alvad and have had to play the same grab ass you have, its 2+ years. not to mention being rejected becouse of my BAD ATTITUDE. can not handle the dyabetic shots after the trans plant , and the very ridgin regimatation of taking the drugs.  wow. mind you this is over that 2 year period of taking my drugs now, refills and all.   what ever! don't choke or panic have a plan b if you can, not a time to freak out! stay steady and love your alvad man with a plan. keep hangin and banging. love is here to stay. and in the words of now-------- peace out.

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june B.

Tue, 01/08/2019 - 7:17PM

Hi Cat,

I just joined this community recently. I just saw your post. I hope your husband's surgery went well if he has had it already. I am 70 years old and had a Heartmate 3 implanted on November 6, 2017. I had been waiting for a heart transplant but could not wait as my heart was deteriorating rapidly. Since I had the surgery, I have recovered and am back to doing the activities I love such as Curves (exercise circuit), volunteering, teaching Sunday School, shopping, etc.) It was not an easy road back but I took one day at a time and have recovered nicely. My sister was an awesome caregiver and continues to be supportive and encouraging as do my other family members. Hang in there my dear. Everything will be okay. I will keep you and your husband in my prayers.