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StaceyPotter37's picture StaceyPotter37
What are the qualifications for getting an LVAD
Thu, 11/23/2017 - 11:10pm

I am 38 years old and I have chronic systolic heart failure and I am in class 3 heart failure and I have shortness of breath with everyday activities and I can't exercise because of the shortness of breath. I had a left and right heart catherization done back in October and I recently met with my heart failure cardiologist and he said that all the pressures inside the heart are high. He also said that right now there is adequate enough blood being pumped through the heart. I am also being told its not time to talk about an LVAD but when is it time. Its frustrating because they can't find any heart failure medications to put me on without having problems with side effects and have to be taken off of the medications. I just want to get my life back.

artshore's picture artshore
Having an LVAD Implanted is a
Mon, 12/04/2017 - 11:01am

Having an LVAD Implanted is a major life changing event. It is typically used for end-stage (stage 4) heart failure patents. You’re young enough for the LVAD to be used as a bridge to transplant, so I’m guessing your cardio team doesn’t want to implant the LVAD until you really need it. Keep in mind once implanted, they usually don’t come out unless the unit is failing or you get a heart transplant.

Having lived with a LVAD for 39 months, it’s a life saving device but not a panacea. Be aware of how your life will change. You’re attached to batteries during the day and plugged into a wall at night. You’ll have a daily routine of sterile dressing changes. A drug regime that includes blood thinners that bring their own side effects, some of which can be major. Bathing is a chore. You have to be cognizant of keeping the external unit and batteries away from water (no boating, jet skiing, etc).

Let me clear, the LVAD saved my life. Without it I wouldn’t have lived another 6 months. But don’t be in too much of a hurry to get one until your cardio team thinks the time is right.

bfast's picture bfast
Is it time for an LVAD?
Mon, 12/04/2017 - 4:37pm

I must say I wholeheartedly agree with the last respondent. (no pun intended) I too was diagnosed with cardiomyopathy at 38 and stage 3 heart failure. I followed a strict regimen of medications, diet and exercise and my heart function improved for nearly 20 years. When first diagnosed, I was told that at some point I would need to talk about transplant. Fast forward 18 years....I started feeling those old symptoms returning and over a 2 year period I steadily went downhill. After my 2nd hospital stay my cardiologist informed me that I should transfer to a hospital where I could receive a transplant. Upon meeting with the Heart Failure team at the new hospital they talked about an LVAD, a word I had never heard before. We discussed what it was and how it could help my condition while waiting for a transplant. Many tests later I was given the all clear to receive the LVAD. As the previous respondent mentioned, it did give me my life back and allowed me to return to work and many activities that I had given up because of shortness of breath, overall fatigue etc.

I was able to return to regular exercise, golf, hiking, biking, etc. I could no longer participate in water sports but at least I was alive and had energy and the color back in my cheeks and lips. It is truly life-saving technology but it has its limits. On long or uphill bike rides I would often have to stop and walk the bike as it could only deliver what it was set for and unlike a natural heart doesn't respond to increased demand. Once I discovered the limitations, I adjusted my expectations and resumed enjoying my life. It gave me the opportunity to see my 1st grandchild born, allowed me to marry the woman of my dreams, and to enjoy her grandchildren as well. I continued on many of the same medications as before the LVAD with a few tweaks. I considered it a small price to pay to have continued life. I would not rush into anything as it does have issues as well. A new daily routine, dressing changes, a shower bag, and having to connect to a power outlet at night. Also you will have to make sure that you have fully charged batteries with you at all times. This can be challenging but with thoughtful planning you can even go camping overnight.

Air travel takes on a whole new meaning as well, as you can no longer be scanned but will have to be patted down before each flight. I was on vacation last summer and attended a wedding on a nearby island that was a ferry ride away. We had planned to take the 2nd evening ferry back to the mainland but it was cancelled due to high winds and choppy waves. I panicked of course as I had only a limited supply of backup batteries as I had expected to be back at my hotel with electricity and a battery charger that evening. As it turned out, the batteries lasted through the night and my backups were sufficient until I could re-charge them. I am grateful to be alive and to have had so many more experiences thanks to the LVAD technology.

StaceyPotter37's picture StaceyPotter37
Qualifications for an Lvad
Mon, 12/04/2017 - 7:07pm (Reply to #3)

Unfortunately, I can't exercise right now because of the shortness of breath I have. The heart failure doctor I see at Cleveland Clinic is having a hard time finding medications for the heart failure that I will tolerate. I tend to have low blood pressure and some drug sensitivities. It sounds like you have been able to become very active since getting your LVAD. Which LVAD do you have? The Heartware or the Heart Mate 2 or Heart Mate 3? Its been very frustrating for me because I have been dealing with the shortness of breath now for 9 months and no matter what they do for me it is not getting any better. Have you gotten a transplant yet or will you be getting one? I feel like right now my life is on hold because I can't do much of anything. I can only walk 10 ft and have to sit down. I get short of breath just doing a flight of stairs. My mom has to do some of the things I use to do. Mom now has to the vacuuming, cooking and sometimes my laundry. Our lives have revolved around me going to doctor appointments. Do you shower with your LVAD? I am very frustrated because of the condition I am in and the limitations I have.

bfast's picture bfast
Is it time for an LVAD?
Mon, 12/04/2017 - 4:37pm

I must say I wholeheartedly agree with the last respondent. (no pun intended) I too was diagnosed with cardiomyopathy at 38 and stage 3 heart failure. I followed a strict regimen of medications, diet and exercise and my heart function improved for nearly 20 years. When first diagnosed, I was told that at some point I would need to talk about transplant. Fast forward 18 years....I started feeling those old symptoms returning and over a 2 year period I steadily went downhill. After my 2nd hospital stay my cardiologist informed me that I should transfer to a hospital where I could receive a transplant. Upon meeting with the Heart Failure team at the new hospital they talked about an LVAD, a word I had never heard before. We discussed what it was and how it could help my condition while waiting for a transplant. Many tests later I was given the all clear to receive the LVAD. As the previous respondent mentioned, it did give me my life back and allowed me to return to work and many activities that I had given up because of shortness of breath, overall fatigue etc.

I was able to return to regular exercise, golf, hiking, biking, etc. I could no longer participate in water sports but at least I was alive and had energy and the color back in my cheeks and lips. It is truly life-saving technology but it has its limits. On long or uphill bike rides I would often have to stop and walk the bike as it could only deliver what it was set for and unlike a natural heart doesn't respond to increased demand. Once I discovered the limitations, I adjusted my expectations and resumed enjoying my life. It gave me the opportunity to see my 1st grandchild born, allowed me to marry the woman of my dreams, and to enjoy her grandchildren as well. I continued on many of the same medications as before the LVAD with a few tweaks. I considered it a small price to pay to have continued life. I would not rush into anything as it does have issues as well. A new daily routine, dressing changes, a shower bag, and having to connect to a power outlet at night. Also you will have to make sure that you have fully charged batteries with you at all times. This can be challenging but with thoughtful planning you can even go camping overnight.

Air travel takes on a whole new meaning as well, as you can no longer be scanned but will have to be patted down before each flight. I was on vacation last summer and attended a wedding on a nearby island that was a ferry ride away. We had planned to take the 2nd evening ferry back to the mainland but it was cancelled due to high winds and choppy waves. I panicked of course as I had only a limited supply of backup batteries as I had expected to be back at my hotel with electricity and a battery charger that evening. As it turned out, the batteries lasted through the night and my backups were sufficient until I could re-charge them. I am grateful to be alive and to have had so many more experiences thanks to the LVAD technology.

ladyiceblue's picture ladyiceblue
Needing an LVAD - Get a second opinion.
Tue, 12/05/2017 - 10:20am

I do not know what city and state you are in. My husband received hius LVAD at Memorial Hermann Hospital at the Medical Center in Houston, Texas. He received Heartware (not Heartmate) (both are excellent heart pumps). He has had his heart pump for almost 4 years and has done miraculously well. The first 5 1/2 months, we lived at the hospital. His lungs, kidneys, liver failed and he became nacrotic (even though he is not diabetic). He is doing very well now and is truly a living walking miracle of God.

His cardiologist is Dr. Siriam Nathan and he is absolutely the most brilliant doctor we have ever had (we are very particular about doctors).

The phone number is 713-704-4300.

Getting a second opinion from a brilliant cardiologist can only help you.

Praying for your recovery.

StaceyPotter37's picture StaceyPotter37
Qualifications for an Lvad
Tue, 12/05/2017 - 11:20pm (Reply to #6)

Unfortunately, I live in Pennsylvania and the only place my insurance will let me go to out of state is Cleveland Clinic. I am glad that your husband is doing well with his LVAD. Is your husband bridge to transplant or is he destination therapy? I was hoping that when I get an LVAd that I can get the newer LVAD the Heartmate 3. I also understand that this is a very big descision to make and that it shouldn't be taken lightly. I also understand that there are all kinds of risks involved with getting an LVAd. Does your husband shower with his LVAD or does he do sink baths? How have things been with having the LVAd?

Stacey

ladyiceblue's picture ladyiceblue
Having an LVAD
Tue, 12/12/2017 - 12:55pm (Reply to #7)

Hi, Stacey: My husband is destination therapy. Dr. Nathan feels a heart transplant would be too risky for him due to all of the complications four years ago when he had the LVAD implanted. You may want to talk with your doctor and do lots of research online about both the Heartware and the Heartmate 3. I do not know what criteria the surgeons used to choose Heartware over Heartmate for my husband. They chose Heartmate for other patients. You are so right! Getting an LVAD is a very big decision as your life does change. As another individual has stated, it is a small price to pay for being alive. Don takes showers. We have to make sure the controller and batteries are closed tightly inside the protective bag and that no water can get to them.
Dressing changes have to be done every 3 days (with the new kits). Being very thorough in cleaning the drive line area is a must to keep infection away.
Don is doing absolutely awesome with his LVAD! I do give him lots of healthy supplements along with his medicine each day. He cannot have any salt, but Mrs. Dash seasonings work great! He takes a blood thinner and cannot eat leafy green vegetables very often as they thicken the blood.
We live by our strong faith in Jesus Christ and have learned to trust in God totally. After all, He is the One that is truly in control. We are very thankful for the LVAD technology and for blessing us with awesome doctors and nurses.
Any questions you may have, I will try to answer. Have a wonderfully blessed Christmas and New Year!
Don & Portia

StaceyPotter37's picture StaceyPotter37
Dear Don&Portia,
Tue, 12/12/2017 - 7:45pm (Reply to #8)

Dear Don&Portia,
Has your husband had any problems with having an Lvad? What class heart failure was your husband when he got his LVAD? What activity level does your husband have ? Is he happy having his LVAD? What was life like for your husband when he first got his Lvad? How long did your husband end up being in the hospital after first getting his Lvad? Has he needed to be hospitalized since then? What hospital did your husband get his Lvad at? Life is very frustrating because I’m not able to do what I use to be able to do.