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Cat S. Caregiver

Where are the recent posts, I am scared!!

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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In reply to by Susan P.

Jose N.

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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In reply to by Susan P.

Ralph F.

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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In reply to by Susan P.

Brenton L.

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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ron l.

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.

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.

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.

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.

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.

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.

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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In reply to by Cindy R.

Richard B.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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Reiss T.

I recieved my HM II about eight and a half years ago at age 70 as a destination therapy patient. Since then I have had no hospitalizations or serious illnesses relating to my heart of LVAD. I have traveled all over the place, including two weeks in Italy, for family and military reunions and to visit kids and grandkids. I have driven across country from Florida to Arizona and back two and a half years ago. Yes, there can be complications, but in my case none that weren't manageable. I have had some issues with arythimas resulting in two cardioversions and an anticipated ablation, but this has been more of a nusiance than a serious problem. I have been shocked one time by my ICD about three years ago after going up a flight of steps a bit too fast. No infections so far. I shower about once a week and my wife changes the dressing after I get out of the shower. My wife is my caregiver and she could teach a class on how to change the dressing. When she was seriously ill five years ago I was well enough to take cafe of her, cook all the meals, clean the house, shop, take her to doctors' appointments, etc. Having an LVAD is not easy but if it's keeping you alive you deal with it. No self-pity allowed. Appreciate the time you have been given. 

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Jerome M.

I am 77 and my LVAD is a destination implant due to my age. I had other problems and spent the better part of 6 months in hospitals. I have been dealing with severe back pain and thanks to Cardiac Rehab and PT I am improving considerably.

Profile picture for user jm1963ga@att.net
Jerome M.

I am 77 and my LVAD is a destination implant due to my age. I had other problems and spent the better part of 6 months in hospitals. I have been dealing with severe back pain and thanks to Cardiac Rehab and PT I am improving considerably.

Profile picture for user jm1963ga@att.net
Jerome M.

I am 77 and my LVAD is a destination implant due to my age. I had other problems and spent the better part of 6 months in hospitals. I have been dealing with severe back pain and thanks to Cardiac Rehab and PT I am improving considerably.

Profile picture for user jm1963ga@att.net
Jerome M.

I am 77 and my LVAD is a destination implant due to my age. I had other problems and spent the better part of 6 months in hospitals. I have been dealing with severe back pain and thanks to Cardiac Rehab and PT I am improving considerably.

Profile picture for user jm1963ga@att.net
Jerome M.

I am 77 and my LVAD is a destination implant due to my age. I had other problems and spent the better part of 6 months in hospitals. I have been dealing with severe back pain and thanks to Cardiac Rehab and PT I am improving considerably.

Profile picture for user jm1963ga@att.net
Jerome M.

I am 77 and my LVAD is a destination implant due to my age. I had other problems and spent the better part of 6 months in hospitals. I have been dealing with severe back pain and thanks to Cardiac Rehab and PT I am improving considerably.

Profile picture for user jm1963ga@att.net
Jerome M.

I am 77 and my LVAD is a destination implant due to my age. I had other problems and spent the better part of 6 months in hospitals. I have been dealing with severe back pain and thanks to Cardiac Rehab and PT I am improving considerably.

Profile picture for user jm1963ga@att.net
Jerome M.

I am 77 and my LVAD is a destination implant due to my age. I had other problems and spent the better part of 6 months in hospitals. I have been dealing with severe back pain and thanks to Cardiac Rehab and PT I am improving considerably.

Profile picture for user jm1963ga@att.net
Jerome M.

I am 77 and my LVAD is a destination implant due to my age. I had other problems and spent the better part of 6 months in hospitals. I have been dealing with severe back pain and thanks to Cardiac Rehab and PT I am improving considerably.

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mike d.

dear scared one:   go back to basics and not in your emotions. big mistake, thank god you did it it, its the only way to get in.  i have done the same thing. talk to the doctors  and do not let them buffalo you into there bizzy schedual!  bull shit, this is your life and go figure , you are payiong for this!!! keep  hangin and bannging on this one till you get your answer. there is nothing to fear except death, and you aint there yet. that time is comming BUT NOT NOW! this device in my chest has saved my life 4 now. no drive line infections  & the wife changes my dressing 2. you are not alone in this ocean of technoligy, got your trans script of your records from your primary dr. this trick saves money becouse thay get it 4 free. keep talking to the big guy up stares and you might be ok. sincerly mike d. not the alvad man!