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Thomas M. Recipient

Attitude is Everything

Fri, 07/13/2012 - 11:13AM

I was just slightly winded, short of breath, even though I hadn't walked far. I had been fit and healthy my entire life so whatever was wrong couldn't be serious, I thought. I was diagnosed with heart failure in October 2009. My decline was rapid and by April 2010 I was constantly in and out of the hospital. My body's functions began shutting down as they were denied proper blood supply. Finally, after nearly dying in an emergency room, I was transferred (thankfully) to Sharp Memorial Hospital in San Diego where I had the best team possible caring for me. Within a week, I was in surgery having my Thoratec Heartmate II LVAD implanted. After the implant and as I began to feel better, I decided to take the problem as my own and find a solution as no cause had ever been given to me, save for a good guess that it was from a virus. I read obsessively and searched for a doctor to work with me, which I finally found. Once on a three pronged program, my heart began to heal. Within four months, my ejection fraction rose from a pre-surgery 18 to 35 in October 2010. My cardiologist told me that if the trend continued they would be able to remove the LVAD in the future. I stayed my course and in June 2011, my ejection fraction had risen to over 50 and surgery was scheuled. My LVAD was finally removed in September 2011. I am back to life with my own heart, able to shower, bathe and swim. I have written a book about my experience, my path to wellness and the lessons I learned from this, at times, nightmarish experience. I speak to groups about heart disease, LVADs and taking responsibility for your own health issues. I could have rolled over and felt sorry for myself, something that would have been quite easy to do, but instead I decided to take control and move forward. I hope you all do the same.

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Beth B.

Thu, 07/19/2012 - 8:48PM

That is so inspiring. I am 51 yr old single mom with no known cardiac issues until a massive MI June 17th which ended up with heart failure and a LVAD insertion June 21st. I am so depressed . I had a EF of 10 prior to my Ivad and when I left the hosp it was up to 25 I feel I have hope but don't know what do. Any direction reading, excerises you can suggest or direct me to I would be ever grateful . Thank you.

Beth Boshart

105 wells Drive

Utica, new York 13502

315-796-2858. Skylarpaiege@yahoo.com

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Adi S.

Sat, 08/04/2012 - 1:32AM

Thomas, your story is inspiring. you mentioned that you have done some research in regards to the doctor that worked with you. Could you please provide more information about the doctor? I would greatly appreciate it.

Also, I am very interested in learning more about your experience. Is there anyway that you could provide your e-mail address?

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DaKeia W.

Wed, 08/08/2012 - 3:25PM

Hi Beth-

Try being only 24yrs old with no known cardiac issues and suddenly been rushed into surgery for a 4x bypass! With no explanation as to how this happened, just that my artery tore from giving birth and it happens so rare it's like playing the lottery. My EF is also now at about 10-15% even after the LVAD. I was on a steady routine of exercing recently and kinda feel down when I go to my routine appts and hear the same thing "nothing's changed".

Don't get me wrong I am forever grateful for my LVAD because I am still living and able to get back to a pretty much normal life but I also what like to know what the author of this post did to reverse his heart failure.

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Courtney W.

Mon, 01/01/2018 - 8:33AM
Hi . I am 29 an just have some questions about your lvad experience. I have a EF of 15% and the most I have ever experience is swelling . My last hospital visit I was told I couldn't take any of my meds an was put on milrinone. Did you ever have to be on that medication? They are saying I should consider getting the lvad.
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Jim S.

Mon, 01/08/2018 - 9:56AM
When my LVAD was placed my EF was 5-10% after getting used to it I loved it........but in Nov of 2015 I got a blood clot and that moved me up to Status 1A for one week and on 12.17.15 I received my NEW Heart..... which was also my 33rd wedding anniversary.... Be strong..... and feel free to e-mail ANYTIME....♥
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Karen T.

Mon, 01/15/2018 - 1:25PM
I am curious how you are doing since your heart transplant. My 16 year old son has had his lvad for 2 months and we are doing good so far. It seems like the doctors are pushing for transplant and getting on the list as soon as possible. I am very nervous about transplant and my son does not want a transplant. Would like to hear some personal thoughts about transplant vs living with lvad
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Cindy R.

Tue, 01/23/2018 - 1:27PM
I would be happy to share my thoughts on transplant vs lvad, although bear in mind that I am much older then your son. I received my 1st lvad in February of 2010, just before my 50th birthday, due to heart failure due to a virus. As can be imagined, the surgery and recovery were painful and hard. It was a good 6 months before I realized that I was finally normal again. My first instinct was not to have any more surgery ever again, but went ahead with the transplant requirements since it did seem they were pushing to that end. I finally decided that I did not want a transplant, mostly because I've had a great life, great family, children and grandchildren. Save them for the young. Then I did some soul searching and realized that I had a gut instinct that I would not make it through the first year post transplant. I understand this is the hardest time, and if a patient can get through the first year, they are good. I also have dogs, live in the woods, love to garden; and just didn't want to have to stop any of that. I also realized that all my heart caths were to prove I didn't have another disease, and could stay on the transplant list. I decided that transplant was not for me. The lvad has worked really well with my body, and going without baths and swimming was ok with me. I got flat out lazy, and started cleaning my dressing every other day, and over the years, it got even longer at times. I got an infection and was hospitalized in 2014, in which I had no pain and no symptoms. I was told that once an lvad patient gets an infection, they will always have an infection. I heard it, but didn't get it until this past April when I had an infection that included pain, fever and absolutely no energy or appetite. It was the exact same infection I had in 2014, it just stayed dormant, attached to the nonorganic material of my lvad, and resurfaced with a vengeance in 2017. Their best iv drugs barely touched my infection, but helped enough so they could perform surgery. Due to scar tissue, I had no idea of what surgery I would have. I had 3 options, 2 that I pray your son never has to face. 1) be discharged to hospice, and I know I wouldn't have lasted long. 2) surgery was only able to remove part of the lvad, causing me to be on antibiotics for the rest of my life, and given a 2 year life span. 3) surgeon was able to remove and replace entire system. I was blessed and received the 3rd option, and am very grateful. With my age, and surgeries, I can have no more, so this is my absolute last chance, and probably more then I deserve. Infection should scare you at least as much as transplant. I can't tell you the lesser of the 2 evils, but at his young age, I would push for the transplant. The surgery stinks, but can obviously be overcome. Regardless of your choice, please, please; never let down your guard for infection, or for daily cleaning of his dressing. I cannot express my feelings at the possibility of hospice. I chose to believe the doctors push transplant because it offers the longest life possible for the patient. I sure wish your whole family the best.
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Fred C.

Mon, 01/08/2018 - 10:16AM
I was on debutimine drip for 6 months and it did not work. These meds are very dangerous. Do your research. I can tell you for debutimine that life expectancy of a year was very small. I had teh LVAD put in in 2014. I'm going on 4 years as I am bridge to transplant. By the way I was 48 when the heart attack just about killed the left side of my heart. My EF was 13 when I had the LVAD installed
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Bob B.

Mon, 01/08/2018 - 11:56AM
Hello - I was put on Milrinone for a week in hospital back in 2013. My EF was 10% and like you I was walking around, albeit slowly with lots of edema and shortness of breath. Milrinone was not effective for my heart failure and I received the LVAD in April, 2013. At first it was not adjusted correctly and I had lots of fluid on my lungs, which eventually was removed through a procedure. After adjustment and removing the fluid I began to improve. Upon continuing cardiac rehab at home my INR became too low and I suffered a clot (Thrombosis) in my HeartMate II LVAD that sent me back to hospital for 2.5 months. Drugs cleared the clot after a few days, but this was a serious event. I manage my own blood thinner (Warfarin) now and test at home with the Alere monitoring program which eliminated the trips to the anticoagulation clinic for testing. I returned to work in August, 2013. Now, 4.5 years later I remain on the transplant list, with the hopes of a transplant happening within another year, but with blood type O and my ability to function so well, it could be longer. You don't say you are on the transplant list, and I'm no doctor, but I would listen to your cardiologists as they know your situation best. I sometimes wonder if I had remained in hospital as Type 1A vice my 1B status with the LVAD if a transplant would have come sooner -but the gamble is on your life. Good luck to you, and as said by others reach out anytime.
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Rose C.

Mon, 01/08/2018 - 3:30PM
I was put on Milirone last year at this time after almost had all my organs shut down I was one sick girl. Milirone only worked for 1 month my ef was 12% and just kept dropping so I had open heart surgery 3/31/17 and decided to put in the LVAD till transplant and it’s changed my life a lot better more energy but now I’m waiting for transplant
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Courtney W.

Mon, 01/01/2018 - 8:33AM
Hi . I am 29 an just have some questions about your lvad experience. I have a EF of 15% and the most I have ever experience is swelling . My last hospital visit I was told I couldn't take any of my meds an was put on milrinone. Did you ever have to be on that medication? They are saying I should consider getting the lvad.
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Thomas M.

Mon, 01/08/2018 - 10:07AM
Yes, I have been on milrinone before. I can't really tell you what you should do. Your EF is quite low and I'm sure you are not feeling well. I will tell you that the LVAD made me feel 1000% better and I was able to lead a mostly normal life with it. It does give you a good quality of life while considering other options. Once implanted, you can consider the transplant option, simply living with the LVAD, or, like me, seek alternative answers to healing your heart. I wish you all the best. God Bless. Tom
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Courtney W.

Mon, 01/01/2018 - 8:33AM
Hi . I am 29 an just have some questions about your lvad experience. I have a EF of 15% and the most I have ever experience is swelling . My last hospital visit I was told I couldn't take any of my meds an was put on milrinone. Did you ever have to be on that medication? They are saying I should consider getting the lvad.
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Courtney W.

Mon, 01/01/2018 - 8:33AM
Hi . I am 29 an just have some questions about your lvad experience. I have a EF of 15% and the most I have ever experience is swelling . My last hospital visit I was told I couldn't take any of my meds an was put on milrinone. Did you ever have to be on that medication? They are saying I should consider getting the lvad.
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Thomas M.

Wed, 08/08/2012 - 5:21PM

Because of inquiries, my book is called, "One Percent: My Journey Overcoming Heart Disease" by Thomas Martin. If you have sincere questions, you may contact me at thomas_martin_ca@hotmail.com. Please reference MyLVAD in the subject line.

Thank you.

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Thomas M.

Fri, 08/10/2012 - 9:20AM

?More than that, we rejoice in our sufferings, knowing that suffering produces endurance and endurance produces character, and character produces hope, and hope does not disappoint us, because God?s love has been poured into our hearts through the Holy Spirit which has been given to us.? Romans 5:3-5

?Hope is a good thing, maybe the best of things.? ? The Shawshank Redemption

Hope empowers you - victimhood degrades you. It's your choice.

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Teresa P.

Fri, 08/10/2012 - 9:05PM

Kimi,

I was in a similar situation as you. After my fourth child I had three of my main arteries disect and I was rushed into a triple bypass. I then had an external pump and after ten days with no improvement I had my LVAD implanted. I was 34 yrs. old and I had a two week old baby. I was also told it was very rare to have no heart problems and have the disection after multiple births. I could've gotten mad about the situation but I feel that everything happens for a reason. God got me through this situation since I was told by the doctor I should've died. Now I'm alive with my LVAD and I'm able to be with my loving husband and four kids. I enjoy giving hope to other patients who are getting LVAD's. God has given me so much joy through this situation. We are still praying that my heart will heal and I'm trusting Him since He know's what's best. I hope everyone with LVAD's can find at least one positive. My positive is that I'm alive and can enjoy life with my family.

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Thomas M.

Thu, 09/27/2012 - 8:25AM

Wow - had quite an interesting meeting with a new cardiologist, now that I live in Texas and no longer in California. I feel sorry for all of you out there that may have doctors like this one I saw. Unbelievably rude and pessimistic. In spite of all that has happened to me his narrative could be condensed into the following: "Regardless of what has happened, you'll die of heart failure anyway." and "I am god - you are not" I won't be seeing him again, but that means I have to start over here and find someone else. I need to think of a way of pre-interviewing them before even setting an appointment. It is amazing the arrogance that infects these people when they put on a white coat.

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Jeff W.

Mon, 12/04/2017 - 11:28AM
Thomas, I don't know who this doctor was, but depending where you are in Texas, there are great teams in Dallas and of course the De Bakey team here in Houston at the Methodist hospital. If you need particular names email me at jeffwillcox@comcast.net
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MaryH B.

Mon, 03/11/2019 - 1:05AM

Yes - my daughter is now at Baylor University Medical Center in Dallas and will have the LVAD implanted very soon - the LVAD/transplant team is fantastic.

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Jeff W.

Mon, 12/04/2017 - 12:02PM
I have spent a little time on this as I needed to be somewhat free to move and swing my arms. here are a few suggestion. I metal detect, fish and have played golf. 1. Undertech/unerarmor has a concealment vest for pistols. Get the one for two pockets at the arm pit. This garment along with the belt mounted case for the monitor allows for a normal shirt to be worn over the batteries and looks completely normal. 2. Betabands make a product call "under the jack pack" that is a backpack about 3/4" thick. It was designed to carrying a laptop (get the larger version) under your jacket. It fits very snug to your back and can act as a back warmer as the monitor heats up. I cut one thread that create a pencil holder area and it made it large enough for the second battery. The control just lays in the bottom. You might want to also protect where your driveline comes out because there are zipper teeth there. I had a tailor cover that with heavy material. Your arms are now completely free to swing about. The one problem with this is the shoulder strap keeps falling off. I guess I can correct this with more adjustment. 3. My favorite are the ammo pouches I had enlarger to fit the battery. I now wear a separate 2" leather belt that has the original monitor case and two ammo pouches on it. the reason it is separate from the belt holding my pants up is that there are no loops to keep me from sliding the batteries to what ever position I want at the moment. If I am sitting I want the batteries to my sides, if I am swinging I want them all the way behind me, if am laying down I want them out from under me. So this equipment was done for me by a boot maker which isn't hard to find in Texas. 4. I have been watching an ad on TV for a product called "the Scotty vest" and it looks like it could be used as a way to carry all of our stuff.
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Jerome M.

Wed, 06/24/2020 - 11:37AM

I have several Bosco Vests that are over the shirt and have all the pockets you need. Cindy makes them to fit you. I'm past the point of being self conscious after going on three years. The vests are made for men or women as needed and to your measurements. If anyone is interested the website is as follows: www.boscolvadvest.com. Her husband was an LVAD patient and has since had a heart transplant. 

I started out with Ventricular Tachycardia in 2002 and I am on my third pacemaker/defibrillator and 110 shocks and I am still here with the grace of God. I received my HeartMate Three on March 9, 2018 at Cleveland Clinic. I can't do all the thing I liked such as golf and woodworking. I walk as much as I can and I am still here with my wife and family and all is good.

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Jerome M.

Wed, 06/24/2020 - 11:37AM

I have several Bosco Vests that are over the shirt and have all the pockets you need. Cindy makes them to fit you. I'm past the point of being self conscious after going on three years. The vests are made for men or women as needed and to your measurements. If anyone is interested the website is as follows: www.boscolvadvest.com. Her husband was an LVAD patient and has since had a heart transplant. 

I started out with Ventricular Tachycardia in 2002 and I am on my third pacemaker/defibrillator and 110 shocks and I am still here with the grace of God. I received my HeartMate Three on March 9, 2018 at Cleveland Clinic. I can't do all the thing I liked such as golf and woodworking. I walk as much as I can and I am still here with my wife and family and all is good.

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Jerome M.

Wed, 06/24/2020 - 11:37AM

I have several Bosco Vests that are over the shirt and have all the pockets you need. Cindy makes them to fit you. I'm past the point of being self conscious after going on three years. The vests are made for men or women as needed and to your measurements. If anyone is interested the website is as follows: www.boscolvadvest.com. Her husband was an LVAD patient and has since had a heart transplant. 

I started out with Ventricular Tachycardia in 2002 and I am on my third pacemaker/defibrillator and 110 shocks and I am still here with the grace of God. I received my HeartMate Three on March 9, 2018 at Cleveland Clinic. I can't do all the things I like such as golf and woodworking. I walk as much as I can and I am still here with my wife and family and all is good.

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Scott M.

Mon, 06/15/2020 - 7:04PM

I am using a football pad girdle inside out. The hip pad area is used for the controller and the thigh pad areas are used for the batteries. I have used this for a year and half. I also wear a lot of jeans and since I am in Florida I also wear Dickies shorts as well. Both items work well and it is unnoticeable. Any questions my email is matthewsscott025@gmail.com.

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Thomas M.

Sun, 10/21/2012 - 6:51AM

Hello Acura - I have also posted under "Daily Living With the LVAD." Here is the link/with photo of what I used to carry the equipment. Best of luck:

http://www.mylvad.com/community/day-to-day-life/Non-conventional-Option-for-LVAD-equipment-bags_848

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Peter H.

Mon, 10/29/2012 - 1:15PM

Thomas your story is inspiring. I am a professional musician and have had heart issues my whole life. I have never looked at my glass as half empty. Even when I was just days from death I knew that if I died that I had lived a full life. Thanks to a great family when I was growing up and a great wife now I'm rocking hard. I have had my VAD for a year and a half and I'm back on the road touring and playing music and touching lives with my stories. I'm also doing some public speaking engagements as well where I incorporate music and stories. Life is good!

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Jerome M.

Wed, 06/24/2020 - 11:46AM

You have a positive attitude and that is the most important thing we can have with our situation. I feel blessed every morning when I wake up to another day. My wife and family and friends have been great for support and I am doing well.

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Thomas M.

Mon, 10/29/2012 - 3:31PM

Hi Peter! Thanks for your post. I'm happy to hear you are out and rocking the globe!! I went to one LVAD support group meeting where two people were whining about what small things they were unable to do. I couldn't take it. Life with an LVAD, in my opinion, is pretty normal, barely inconvenient. So, I never went to the group again. I was afraid I'd stand up and start yelling to "BUCK UP PEOPLE!" and everyone would hate me. So - safer to just not go. Now I have the floor whenever I speak and hopefully inspire people and sell my books. I have been invited to speak at the Mended Hearts national convention next year in San Diego, CA - so quite excited about that!

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Thomas M.

Wed, 03/27/2013 - 12:01PM

Hi William, the details of all what I did are in my book. Basically, it was switching to a nutrient-dense diet, balancing hormones (especially Armour Thyroid and testosterone), exercising and eliminating toxins (e.g. flouride, mercury and aluminum). I know - that's four, not three...

Would love to hear more about your situation. My web site is www.OnePercentHealth.com.

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Thomas M.

Tue, 04/08/2014 - 10:10AM

Hi Everyone, just want you all to know that I have a new book out. It is a step-by-step guide to optimal health. It is available on my website www.OnePercentHealth.com.

Brenda - I am not familiar with the e-mail address you posted. I have not received anything from you on my addresses. Sorry.

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Nasir S.

Tue, 07/29/2014 - 12:50PM

Thanks for posting this. I am a relative newbie and had my LVAD since November 2013 and same old story, in that I'm waiting for a transplant. But so glad to hear you were feeling what I am now. I feel good and go to the gym and in my heart(no pun intended) I feel I can get better and then I saw your story and thought wow! I don't want to go support group either, as its so negative and plus I want travel and they have given me so much grief. Admittedly its a hassle flying ( I want to go to the US, I live in the UK)but I want to go anyway and now reading your stuff makes me feel its worth at least trying to travel, and trying to get better and basically just giving what I want to do a go and what ever the end result it was better than doing nothing. Thanks and hopefully I'll get your result too (I'm buying the book too).

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Thomas M.

Tue, 07/29/2014 - 2:21PM

Hi Nasir, I wish you all the best. I strongly recommend reading books by Dr. Mark Starr about hypothyroidism. I also recommend my own books. I believe that those of us who have idiopathic heart failure and are under age 50 have a good chance at reversing the problem. There is a holistic practitioner named Janet who commented on Dr. Starr's most recent book. She helped an 86 year old man get much of his heart function back. It takes effort and time of taking control of your own health. I wish you the best!!

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Vivian W.

Mon, 04/03/2017 - 4:53PM
Your story is so inspiring. I got my LVAD November 8 2016.
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P D.

Tue, 05/23/2017 - 9:59PM
Does anyone know how Thomas Martin is doing? I bought his book. But, he seems to have dropped out of sight after 2014.
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Thomas M.

Mon, 12/18/2017 - 8:36AM
Hi Pat, Thank you for your concern. At some point I had trouble logging I into this website, grew frustrated and just gave up on it. I am doing well, still reading and still exploring answers to heart failure. It is distressing that in my reading the medical community keeps talking about increases in heart failure patients but, what is not addressed, is why. My medical teams, both in California and now here in Texas, are not the least bit concerned with Why. In general, I am doing well. I am still writing and blogging about health issues. I recently came out with a series of 10-Step E-Books on a variety of health issues (all available on my website). I am also writing other types of books now which should be released early next year. Take care everyone. Stay optimistic and Healthy! Praise God every day. Tom
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P D.

Wed, 05/24/2017 - 6:51PM
Does anyone know how Thomas Martin is doing? I bought his book. But, he seems to have dropped out of sight after 2014.
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Fred T.

Thu, 01/18/2018 - 6:48PM
Hi- Fairly new to ity new to. Healthy then 3 months later Heart Failure. 2months next week w/ L-Vad Heart ware. Im not ecited about Transplant. Steroid- rejectipon meds- etc. What can a guy do to help recover heart & e-fraction, Advise? Im computer illiterate. IBut learning. I read some of your post, Just now figured out how to send you message. Thanks Fred -hope u get this
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Thomas M.

Fri, 01/19/2018 - 9:13AM
You can learn what I did to heal my heart in my book, "One Percent: My Journey Overcoming Heart Disease" available ONLY from my website: www.OnePercentHealth.com.
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Fred T.

Wed, 02/07/2018 - 2:47AM
Hi- Sorry to bother u again, but a couple of questions. Do all or most recipteants (LVAD) have problems. Infection- bacteria -GI. Bleeding . Constant hospitalization? Your Removal of LVAD via open heart surgery? I ordered 1% Solution If you could answer above question. Email Todelay@aol.com I’m still trying to figure out how discussion works Thanks Fred
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Brian L.

Mon, 02/12/2018 - 1:50PM
I hope you won't mind my interjection myself into this discussion. I have had my LVAD for about a year and a half and, if not for human error, it likely would have event free. I find that if I do not drink enough water (the LVAD doesn't work well if you aren't HIGHLY hydrated - suction alarms in my situation requiring that I drink a glass or two of water rather quickly or risk grogginess). I also learned that the drive line is not static ... it will move if you pull it. I accidently pulled mine while enjoying the "new" health that it provided and assembled a shed. I finished the shed (albeit a lot slower than I would have years ago), but, in doing so, pulled my drive line which led to a staff infection and the need for surgery. Thankfully, the surgery was uneventful and I am back to trying to behave myself while enjoying feeling a LOT better than I did before it was implanted. My experience at Duke, which has a LARGE LVAD population, is that some complications (usually not specifically related to the LVAD be in error, such as my hydration issue or other medical issues such as weak lungs or kidneys) are common, but ones requiring hospitalization are infrequent. Mechanical issues are virtually non-existent among this population. (I had always worried about having to replace a faulty controller. But, I am told that occurs in less than 1% of all cases.) Regardless, I recommend the technology and applaud what it has done for me as, with a rather competitive transplant list, it is giving me both more and a better life.
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Thomas M.

Fri, 02/09/2018 - 4:17PM
Recently, I have received e-mails sent directly to my e-mail account seeking advice. I need to be clear about something: I'm happy to answer any question you may have, but I am NOT a support group. I will not pat your hand and say, "Oh, you poor dear." I'll give you my blunt opinion. So, if you are looking for something touchy/feeling, I am the wrong person to contact. Thank you.
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Larry B.

Mon, 02/19/2018 - 2:27PM
Trauma to the driveline is the number one cause of driveline infections. I always think of the movie Field of Dreams where the comment is made, if you build it, they will come! If you pull your driveline, infections will come! GI infections do happen but I wouldn’t say common. Lots of things happen because every body is different. The thing that absolutely is the most important advice I could ever give another LVAD patient is to “protect the driveline”. Cannot overemphasize this enough.
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gail p.

Wed, 08/01/2018 - 5:57PM
Hi, Attitude is everything what is the name of your book. My daughter is 35 years old and she has an lvad. She was diagnosed one week after giving birth with post partum myocardiopathy. She almost died in our local hospital in 2012. Thanks to a sharp RN who I knew personally at the hospital she got us transferred to SF who gave us the proper diagnosis which was congestive heart failure. Veronica recieved her lvad October 2012 and still lives with it. Gail Palmer/Care giver/Mother