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Robert B. Prospective Patient

LVAD education/testing day and prognosis.

Today was my education day with my LVAD coordinator, Social worker, pharmist and finance. Of course at this point I am overwhelmed with all the information and such that I got today. My LVAD surgeon will meet with his team next Tuesday to discuss my case, but according to him there is no other choice if I want to live much longer. My heart failure has gotten really bad and the LVAD is my only choice. Transplant is out of the question, so this would be a Destination Therepy surgery. Any words of wisdom, comments, suggestions on how to prepare for what is about to happen, would be greatly appreciated!

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Cathy M.

Dear Robert,

yes it is a lot to deal with! I had mine in August of this year. Although I am on the list for a transplant if I had to live with the LVAD ongoing I certainly could. After living with a 16 percent heart function the miracle of this pump has truly change my life. I did not realize how sick I was for such a long time, I was just used to feeling tired and just not well. My  surgeon  installed the LVAD  through my ribs which greatly helped with recovery time. You need to ask if they can do this where your transplant is being done. After the surgery and they clear you to go home make sure you have appropriate care at home to help with bathing, eating, house cleaning etc. I went home on over 40 pills a day but is now down to 10 a day. I had in home blood draws as upfront there is a lot of blood level monitoring to get the med levels correct. 

It does get easier as time goes on, my big lifesaver was discovering the mesh vest from MY LVAD equipment for LVAD gear, brilliant! It gave me the ability to easily move around with the batteries and drive and wear normal-looking clothing. Also, it really saved my back. 

5 months from now you should be feeling great, cardio rehab has also been a great help in my recovery well.
I wish you the best!

Cathy

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Stephanie S.

I learned in early May 2020 that my EF number was 8, which meant my heart was only pumping at 10%. I live in Pensacola and the doctors here did a great job trying to get different combinations of medicine to work but they knew it wouldn’t “get me out of the weeds” so they proactively set me up to get an ICD once the 3 month timeframe was up for insurance purposes and also referred me to Shands Hospital in Gainesville. I had my transplant evaluation and the team of doctors approved me for the LVAD as a bridge to transplant. I had my LVAD procedure on October 27, 2020 in Gainesville. I got out of the hospital on November 15, 2020. I was so excited to get home and see my family, however, It was very overwhelming once I got home. I felt like I left one person and came back a totally different person. It became more real everyday and I became more emotional as each day passed because as I started moving around more and trying to do more things I realized I couldn’t do everything I could do before the surgery. I was very blessed to have my grandmother and aunt come and stay with us (my boyfriend and 14 year old daughter) during my recovery. I totally agree with Cathy about making sure you have caregivers set up for when you come home. I am a very independent person and didn’t think that I would need help but I was definitely wrong. It is a lot to get used to, what will be your “new normal”. Things that you can look forward to .....1. it will take you what seems like forever to get ready to take a shower 2. You will need a large suitcase just to put your equipment in 3. You will get a lot of crazy looks when you walk into a room and possibly questions like “is that a 24 heart monitor?” or “is that a new kind of oxygen tank?” or “ or “is that a colostomy bag?” 
Even though it is overwhelming at times, I wouldn’t change my decision to get the pump for anything. At first I was in a rush to be put on the transplant list but I am getting used to my “new normal” more and more every day. I am learning what things I can and cannot do and my body lets me know when I need to slow down. 
Good luck with your procedure and don’t hesitate to reach out if you have any questions. 
 

Stephanie s.walker79@icloud.com

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In reply to by Stephanie S.

Barry and Susan (caregiver) S.

Just to let you know, look into vest for women.   My husband wore vest all the time, most of the time people didn’t notice anything unusual .  The plus though is the ease of the weight is equal when wearing a vest.  Look for vest with inside pockets as well.  Travel Smith is one company, vest for fishing or Photographers.  Another is Duluth Trading post, and Scott vest.  Check them out.  God Bless, and life will began to get more equalized.  I do admit there are more things directed to the men.  Susan , husband was BARRY , Rest his soul😇✝️

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Robert B.

Thank you all for your post, it means alot to have support from others. Right now the only stopping point is that I have to get the Covid shots before they schedule the surgery (which has been a total nightmare here in Indy). 

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Robert B.

Hi all, well I got "that" phone call the other day and my admission date to the hospital is April 12, 2021. Insurance has approved either/or pumps. Either the LVAD (HeartMate3) or the new LVAS (EvaHeart). I am in the clinical trials for the Evaheart so we will see what they decide to do. Also got my first Covid shot last week, 2nd shot March 9th.

More Later!

Robert

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Reiss T.

Like Stephanie I was also implanted at Shands/UFHealth in Gainesville, Florida and I agree with her remarks. I am 81 years old and have had my Heartmate II for ten and a half years. I am on destination therapy and for the most part I have thrived.

No two cases are exactly the same because there are so many individual variables such as general health other than CHF, qualtiy of medical care going forward, caregiver support, and attitude to name a few. Lifestyle and self-care may be among the most important variables. Being patient and relaxed during the recovery process, which will vary by person, is a good goal. 

Possibly the most important factor we can control is our eating habits. In my non-medical opinion the high carb, low fat standard American diet (SAD) is behind the epidemic of obesity and Type 2 diabetes and numerous other health isses in America today. A few months ago I switched to a low car, healthy fat eating plan, similar to KETO and quickly lost 15 lbs and was able to eliminate or reduce several meds. I am not recommending this for everyone but it has been great for me. Losing some weight, from 210 to 195 in my case, has made wearing the LVAD gear easier. (Still have another 20 to go to get to fighting weight.)

Much of what I have learned has been from YouTube videos on "lo carb". I generally aviod sugar, baked goods and most vegetable (seed) oils as much as possible after being addicted to them most of my life. I totally avoid soft drinks. It hasn't been difficult and is well worth the effort. This approach is contrary to current dietary guidelines so most doctors and nutritionists are not there yet but I think they will be in the future. Again, I'm not recommending anyone try this but it has been great for me. Get well and stay well. 

  

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Mariza M.

Hi Robert,

Hope that everything goes well for you! I've my LVAD for 5y 1/2 now. The beginning was not so easy but after some adjustment in the medications, mainly the withdrawal of iron supplements, my quality of life was really improved. God bless you! 

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Larry B.

Luckily my wife took charge of everything when my heart finally reached the point of no return. I had a five way bypass 28 years ago and up until five years ago did very well. Then it started going downhill very quickly. About 4.5 years ago I entered the clinical test for the HM3. Basically the same stage as the Evaheart is currently in. As far as the HM3 goes it has been great. But, a year after receiving it as destination therapy I went into a vtac storm and ended up having to have a cardiac ablation and spend another 10 days in the hospital. Other than that, life has been good. I was 66 when implanted and only spent 10 days in the hospital after my surgery. I did not do cardiac rehab since I had it after my bypass surgery and thought it was useless. There are many that swear by it though and if it worked for them, great. Within four months of surgery I was back to playing golf twice a week with no problems. I have had no other problems. My wife has always taken great care of me but she really stepped up on this one. That gave me the ability to just tune out all the things going on around me and concentrating on getting better. Good luck

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Christine L.

I've had my LVAD nine years as of yesterday (February 28).  Those are nine years of enjoying my grandson, who was 6 months old when I was implanted.  Living with an LVAD has its ups and downs, but much of it comes down to your state of mind.  If you determine that you're going to stay involved, try new things or old things that need a different outlook, and just enjoy living, your LVAD journey will be well worth it.  Good Luck, Robert!

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Robert B.

Well I just got a phone call from my coordinator and they have moved my date up to the 25th of this month. I go in the 23rd for a right-cath to check numbers before they see which pump I will get. Having to move things up a month puts a real damper on things, but I need this surgery to live! So I will keep everyone posted as best as I can.

Robert

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Cathy C.

Hi all, I have just started the process to get my surgery. I am a 79 year old woman in fairly good health except for my heart.. My doc says I will be in hospital about 2 weeks, then go to rehab for about 2 months. My question are, if I have the surgery at a New City hospital, can I then use a Connecticut rehab facility? Also will I need an ambulance to take me from the hospital to the rehab facility?

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A.J. C.

Hi Robert.  My name is A.J. Caliendo.  I live in Pittsburgh and was implanted in December of 2020 after being told that, statistically speaking, I would die within one year.  When I was put on the heart transplant list in 2015, I was told that an LVAD could be considered as a gateway to the transplant.  At the time, my comment was “I’d rather die than have one of those.”  Funny how quickly I changed my mind when told that I would die if I didn’t have one of those.  So I took the leap and never regretted it.

Don’t get me wrong, it is by no means a walk in the park.  After the surgery pain management is very important.  Make sure your LVAD team knows if you want strong pain meds.  The recovery is long and hard.  There is occupational and physical therapy that is tougher than anything I have ever been through.  I always bragged that nothing could ever curb my appetite but the thought of food repulsed me.  Still I was told I must eat to get stronger and had to force things down.  I hope you don’t have that problem because if you can eat there are few restrictions on diet.  There is a two month period where you cannot be left alone, so choose a good (no, great) caregiver who can be there most of the time and some others who can give that person a much-needed occasional break.  Your caregiver will be the most important part of your life.  I am very fortunate to have a wife who is so dedicated that she got very high caregiver “grades” from all the hospital staff.

OK, I have given you the horror story, now I’ll tell you why I would do it again in a heartbeat and recommend that others just say yes.

 I am alive almost 4 months after they told me that I would be gone.  Not only alive but doing much of what I used to do aside from leaving my damned house because of Covid.  I feel pretty good most of the time although I don’t have a lot of stamina and have to rest afterwards.  No, being plugged into the wall or hauling around 10 lbs of batteries is no box of chocolates but it is by no means unbearable.  I would ask your surgeon to install your driveline a little higher than usual to make it easier to buckle your pants.  All in all being with the ones you love for a longer time is worth it all and more.

Whatever you choose to do, I wish you all the luck in the world.  Although I am not a religious man I do believe in the power of prayer and will pray for you.

Best of everything ,

A.J.

 

 

 

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Barry and Susan (caregiver) S.

 

I have LVAD equipment that I would like to pass on.  My husband went to join his angels in heaven on Nov. 24 th, 2020.   He was a Heart Mate II , left side.   Most sizes are large in his shirts and vest.   Great condition,  l can send pictures.  Email me at sgs1948@me.com.  I’d love to put them to good use.
Thank you, Susan, Caregiver.
Sgs1948@me.com