Profile picture for user mattkerrybritt@msn.com
Matthew B. Prospective Patient

Been advised that I need an LVAD unit.

So I have been advised that I need to have an LVAD unit. I have HOCM and have been fighting this heart desease head on since 2014 when I had a Septal Myectomy and Transapical midventricular myectomy at the Mayo Clinic in Rochestor MD. These surgeries were very major but really did not improve my quality of life (QOL) at the time and since then my QOL has declined steadly. I am only 56 years old and have been forced to go on disability which I have from my company and Social Security.  While I was being evaluated for a heart transplant they found prostate cancer which threw me off the transplant list. The doctors have been treating the cancer with radiation because they are scared to death to do any surgery on me. But you have to be cancer free for 5 years or more before they will consider me for transplant, so LVAD unit is my last option. The current plan is to get my LVAD unit installed in October (Outside forces dictating the time line). My Doctors tell me that providing that I make it thru the first year that my outcome should be just fine and I can expect to live a pretty long life. 

My question is for those of you that has gone thru this what would you have done different? What are things that should have been done around the house to make the transition easier for you and your spouse? For us this is yet another set of life decisions that we have to make; most people are never faced with such things, but we are strong and will make it thru this next hurdle. Any input you can share would be apprecitated.

Profile picture for user ArminMuza
Armin M.

Hi Matthew,

I'm a former LVAD patient/current heart transplant recipient who has been through many surgeries from age 17-20. I will try my best to assist you with your questions.

Receiving news from the doctors that a LVAD is needed, is definitely a scary and overwhelming process as you may know with your evaluation. It definitely is not the best news to be told that there was cancer discovered but the doctors will do their best to make you cancer free again. The downside of cancer being diagnosed is the wait time to get a LVAD. Hopefully, as time goes on, the cancer goes away and you are in the clear to be a candidate once again! 

To answer your questions; there really is not that much you could've changed or done differently. Maybe more medication may have been given to the point where you are a walking pharmacy, some diet changes such as low-salt. But majority of the times, this is genetic. Sometimes heart problems can go by in your life undetected and sometimes symptoms are shown very clearly. Everyone is different in that matter. Following doctors orders at this point is the best thing you can do.

Things that can be done around the house to make the transition easier for you and loved ones, would mainly be starting with your lifestyle. Diet is big! What you put in your body affects you big time. From your medical history that you mentioned, I believe a low-salt diet is something you may be familiar with. This change of diet is definitely hard to adjust with as first, but adding salt-free seasonings will really help. As well as looking at different diet options that have lower salt contents so you maintain within a certain milligram range if given any by your doctors. Exercising, such as going for walks would be great. During this time in our lives it may be tough in some places, but wearing a mask and avoiding large crowds, you should be good. If you are unable to go on walks since you run out of breath quickly or have edema, try to do as much as you can. Little strolls around your block or backyard should be okay. Always try to be accompanied with someone incase of an emergency. Practicing good hand washing, washing foods that are bought, trying to limit the amount of processed food, since it contains a lot of salt at times. Once time comes for a LVAD, your team will go over education with you on everything, the do's and don'ts. 

Hopefully, this insight has helped you! If you have any other questions, feel free to ask! In the meantime, stay strong and carry out a positive energy everyday. Better days are to come!

Profile picture for user mattkerrybritt@msn.com

In reply to by Armin M.

Matthew B.

Thanks Armin,

The Dr's are setting me up for an LVAD unit because of the cancer. I cannot do a transplant because they found cancer. Dont have the 5 years it will take to get cancer free and then get back on transplant list. A no salt diet has been a way of life for me for a very long time. Have been diagnosed with HCM (HOCM in my case) since I was 30 years of age. Did best I could before having to go surgical route to try and correct problem. I am looking forward to the LVAD option, at least it gives me time and hopefully a new lease on life. I have been thru many major heart surgeries already in my life, hopefully this will be a successful one. 

How long did you have your LVAD unit for? For me it is most likely a destination solution for me so hoping to beat the long term odds and be around for long time. 

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In reply to by Matthew B.

Armin M.

Hi Matthew, 

My apologies for the late response, I've been a little busy with school lately. I truly hope you are doing well. I had my LVAD for about ten months. It truly helped me prolong my life when I needed help the most! I am wishing you the best with this LVAD surgery, and I hope things go well with your recovery. Thoughts and prayers! 🙏

Profile picture for user mattkerrybritt@msn.com
Matthew B.

I thought this was the place for information and to talk with others who have gone thru the LVAD process. Not a single response so not sure what to think. Is there another group that I should be talking with?

Profile picture for user MichaelSmith7
Mike S.

I'm sorry you didn't get a reply sooner than this, Mathew. This forum is usually more active than that.

I'm 84 years old and got an LVAD five years ago as destination therapy; I'm too old for a transplant.  It sounds like you have a live-in caregiver (your wife), which makes things much easier for you.

It took me several months to clear up the problems caused by the surgery itself, but after that, life has been pretty good. I'm low on energy, and lots of tests and doctor visits haven't been able to fix that. However, being feeble is one of those things you get used to. I don't hike any more or do vigorous outdoor things, but I've been able to accomodate pretty well and still enjoy life. I'm very happy to be alive still.

My wife changes my driveline dressing weekly, and I shower at the same time.  From this forum, I've learned that some people change their own dressings, but I can't imagine doing that. The process is done under sterile conditions, and you can't see the dressing site very well. We've (my wife) has gotten very good and smooth at it from practice, so it's not a big deal for us. One of the reasons the dressing change is so important is that the primary reason for LVAD failure is driveline infection. 

We haven't made any changes to our home because of the LVAD. The LVAD puts a lot of restrictions on your life. I don't think most people have the feebleness problem I have; from this forum, it sounds like it's more common to have an active life. However, swimming and small boats is out because the controller is carried on your body, and it's a computer. If it stops, your LVAD stops, and that ain't good.  Taking a shower is a little more complicated than it used to be because the dressing has to be waterproofed and the controller is carried in a special bag to waterproof it. But you get used to it.

Let us know if you have any other questions.

Best of luck to you, and I hope it all goes smoothly for you,
Mike
 

 

Profile picture for user jdneppl
jeff n.

Hey Matthew, I've had an LVAD HeartMate 3 for going on two years now, 11/07/18 placement and couldn't be happier with the results so far. My wife is my caregiver and does my bandage changes once a week and have had no problems so far coming up on my 2 year anniversary. Only thing I can't do is go swimming. I truly believe that these LVAD's can go forever if you want, or so it seems, but then I think I've been very fortunate so far as to how well it't working..good luck and if you have any questions or want to talk let me know.

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In reply to by jeff n.

Matthew B.

I have been told that the sooner I have this put in the better my life will be. They do not want to wait six month or a year because my health is going down hill and recovery will be more difficult. Does your heart still beat? I have read that the heart no longer beats with these things, So i have to wonder why they would leave the ICD in me. Seems like it is just in the way. My wife will be my caregiver, but she is 10 years older then me so I have some worry around that. Hopefully I can get self sufficent and not put too much burden on her. 

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In reply to by Matthew B.

jeff n.

Thats probably true and your life apparently can only get better it sounds like...your heart does still beat ..you don't have a regular blood pressure reading because of the continuous flow of blood by the LVAD...I think they tell you to keep the ICD because its already there just in case it is ever needed...my wife is also older than me..I'm 65 and shes 70.. after two years with the LVAD all she has to do now is change my bandage once a week...

Profile picture for user Deb218
Deborah C.

Hi Matthew,

My husband had prostrate cancer that had spread to his bones when he had his Heartmate 3 implanted. He also knew he would never have a transplant due to his age and the 5 year free rule. If he became cancer free by the time 5 years passed he would be too old for a transplant. He entered the trial for the Heartmate 3 and once out of the hospital did very well for 2.5 years. Unfortunately his cancer returned with a vengeance and he passed away after a 3.5 yr battle with the cancer. He did have radiation infusions the last few months of life and there were no problems with the LVAD he also had oral chemo drugs that were not an issue with the LVAD either.

 

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In reply to by Deborah C.

Matthew B.

Sorry Deborah, that sucks to fight so hard to fix his heart only to loose the battle to cancer. I very much feel that frustration of being caught in the middle. At least my heart team are not afraid to move forward with the LVAD unit and give me more options to deal with the cancer. 

Profile picture for user Deb218

In reply to by Matthew B.

Deborah C.

Dear Matthew,

I think you will be fine. My husband knew eventually the cancer would get him since it had spread to his bones by the time they discovered it. He was very stubborn and refused to go to the doctor and ignored his prostate symptoms. It sounds like you are getting your cancer under control. I have a friend who did the radiation treatments and he is completely cancer free. Your oncologist can work with your cardiologist so you get the best outcome for both health issues.

I wish you the best.

Debbie