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Theresa M. Family Member

Feeling Lost

Mon, 01/25/2016 - 5:18PM
My 39 year old son just received his HeartWare LVAD on November 30, 2015. He was diagnosed with dilated cardiomyopathy in August 2015, his health declined rapidly on October 26th of last year the doctors had to induce him into a coma ad out him on total life support. During this time he battled a sepsis infection which he got while in the hospital, pneumonia, fevers, declining kidney functions, low blood cell count, high blood cell count along with a whole host of other issues. While in the coma the doctors treated the sepsis with broad spectrum antibiotics which cleared the infection and pneumonia. He was waken up from the coma on November 25th a little better than before his body was a little bit stronger and healthier so the doctors were able to proceed with the LVAD implant only now he needed a RVAD also. Here we are almost two months since the VAD implants and he is back in the hospital with an infection to the driveline. Although the infection was caught early I am still concerned because I have been reading information on if the driveline becomes infected what the possible outcomes and consequences are once this happens. I have no one to talk to and we are so new at this that I feel totally lost. Since my son had the surgery his EF has gone from 9% to 18%, he voice is still hoarse from being on the ventilator for so long and being extubated several times due to his BP and HR. He was progressing so well until a few days ago I don't know what to think or believe from the Doctors and VAD Coordinators. They say the infection isn't blood born and I'm grateful for that....Lost
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Dean G.

Fri, 01/29/2016 - 3:01PM
Hello Mom, What I am hearing from you is that your son is actually doing well and it is important to focus on everything that is good and positive at the moment. I read his EF is up to 18%!!! That is fabulous my dear. Be grateful for that. My husband was down to 10% before his implant and without tests, I believe his has doubled also. That is such a huge step in heart disease. The VAD will continue to give him strength as he progresses. Don't be frightened of infections or bleeding...they are all part of the progress of VAD's. Just keep his driveline site clean according to the education you received and always use sterile gloves. You are not alone...there are many caregivers on this site and we are here to support one another. We are new to the VAD world, December 16th, 2015 was his implant, but for many months before and each day now that we are home, I refer to this site for emotional support. Even reading stories over again is beneficial. I like to focus on all the positive stories which help to keep our heads high and give my husband motivation, and then learn so much from the various issues people have experienced. Focus on how well your son is doing now Mom...it will get better. P.
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Lauren W.

Fri, 01/29/2016 - 7:59PM
We hope that you continue to post and update your progress. We will pray for your success and healing as we hope that you will pray and support ours. We will undergo this process in four (4) days. There is anxiety and excitement in looking forward to this surgery. Being aware of risk is important, but being optimistic and supporting the team that is supporting you, is even more important. We wish you and your son the best. Also to the wife who is supporting her husband, we wish your family the best also. Being new to "The VAD World" as you called it, is very cool. We're glad that you guys are already having success. The "feeling lost" is real, but it is also temporary. You have great support, even though it is virtual. We are more hopeful after reading that both patients survived and are on the road to recovery.
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Jeff W.

Mon, 02/01/2016 - 9:40PM
I was in pretty bad shape back in 2013. I already had a triple bypass in 2007 and was working on my third replacement Defib/Pace maker. My cardiologist told me that he had done all he could do, so he was turning me over to the transplant team. Sept 10, 2013 was my beginning. Yes I had a lot of issues early -- infection CDiff only get it in hospitals four different times. There was a lot of rehab by a wonderful group of people. Somehow I kept up my mood and kept telling my self it will be better and it is great compared to the alternative of no VAD. I am now out metal detecting almost everyday and planning a 2000 mile road trip with my wife. I am very active but cautious about lifting anything over 50 lbs. There are issues still, but can be handled day to day. I do not like catching my drive line on doorknobs and set buckles. So take it a day at a time and remember it is better today than yesterday. My Doctor gave me a great piece of advise-- Never be afraid to ask questions and there are no stupid questions. So kept communicating and asking questions. By the way the picture you see is me gold panning in Alaska on a Cruise to celebrate my 9 month recovery.
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Tiffany C.

Sun, 12/11/2016 - 3:52AM
My sons father was diagnosed with congestive heart failure a month before I had our baby back in 2014. Exactly 2 years later, in July he was admitted into the hospital with his heart only working at 4% & his liver and kidneys were shutting down because of the organs not getting the accurate amount of blood to them. He was put into a coma An had his surgery for his LVAD shortly after. Everyday is a blessing that he is still here, but my concern is with him mentally. Has other LVAD patients experienced losing themselves, through their surgery?? It's been more of a mental struggle because of the drastic life change. & is there anything I can do to help him know that I'm there for him, even though I dont understand how he feels because I've never went through it. & here recently he's had some bleeding from his driveline, it doesn't show signs of any infection but some days it takes everything just to try to get to stop the bleeding. He is taking warfarin so I know naturally since his blood is so thin he will bleed more than anybody else. He's only 25 & im 24 so I don't know much about stuff like this, & any input or advice would be very much appreciated!
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Jeff W.

Wed, 01/11/2017 - 12:06AM
I know what a shock it was to be told that your heart is failing. In my case it came slower. In 2007 I received a triple by-pass due to blocked arteries. In 2008 I needed a pace maker / defibulator which had two leads into my heart. It saved my life by shocking me when the heart failed. A year later a third lead was determined needed to be added. During this procedure the pocket for the unit was infected and all had to be removed. A third unit was implanted a few months later and is working fine. In Sept 2013 the doctors determined my heart was in bad condition and when the discussions and decisions ended we decided an LVAD was the best path for me. So am now entering my fourth year with my friend LVAD. I know that your young age that with the LVAD you should build up you strength and overall health. A heart will be there for you and a long life is in front of you. I know I sound extremely optimistic, but that has always been the way I looked at my situation. In reality I should have been buried some years ago. I know all this doesn't really address your concerns. My advise to you is first to ask your doctors any and every question you have. My wife apologized once for asking what she felt was a dumb question question, but my Doctor immediately corrected her by saying there are NO dumb questions. The next advise is for you and your husband to join a support group. there are several on facebook - just search LVAD. In addition there is a web site at MyLVAD.com which sponsors a first Monday of the month on line meeting of LVAD recipients and care givers from across the country. The last meeting was only about 15 people so you have a chance to voice your questions. Please join and I look forward to meeting both of you there next month.
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Jeff W.

Wed, 01/11/2017 - 12:11AM
I know what a shock it was to be told that your heart is failing. In my case it came slower. In 2007 I received a triple by-pass due to blocked arteries. In 2008 I needed a pace maker / defibulator which had two leads into my heart. It saved my life by shocking me when the heart failed. A year later a third lead was determined needed to be added. During this procedure the pocket for the unit was infected and all had to be removed. A third unit was implanted a few months later and is working fine. In Sept 2013 the doctors determined my heart was in bad condition and when the discussions and decisions ended we decided an LVAD was the best path for me. So am now entering my fourth year with my friend LVAD. I know that your young age that with the LVAD you should build up you strength and overall health. A heart will be there for you and a long life is in front of you. I know I sound extremely optimistic, but that has always been the way I looked at my situation. In reality I should have been buried some years ago. I know all this doesn't really address your concerns. My advise to you is first to ask your doctors any and every question you have. My wife apologized once for asking what she felt was a dumb question question, but my Doctor immediately corrected her by saying there are NO dumb questions. The next advise is for you and your husband to join a support group. there are several on facebook - just search LVAD. In addition there is a web site at MyLVAD.com which sponsors a first Monday of the month on line meeting of LVAD recipients and care givers from across the country. The last meeting was only about 15 people so you have a chance to voice your questions. Please join and I look forward to meeting both of you there next month.
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Gregory D.

Mon, 01/09/2017 - 11:59PM
Hi there, well to be honest it could have been a lot worse. Drive line bleeding, some is normal and as in my case my car's seat belt kept rubbing on it. Just follow the cleaning procedures that are needed and it will close eventually. Emotionally... your husband went through a really really tuff time. at the point of passing away, and then an induced coma. Been there done that too. I had all of this happen to me in 2013 and am a DT LVAD, no chance to xplant. But thats ok. Your husband needs to get up and get out and start living again. He was given a little baby, and the time that little person needs from him. Given time and a lot of inner fortitude, you guys will come through it all.
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Jeff W.

Tue, 01/10/2017 - 11:21PM
I posted earlier this year in Feb. I am now enjoying fishing and metal detecting, both of which gets me outdoor and feeling the sun. I am 72 years old and this LVAD is destination therapy. I am doing great in my mind and look to the future with joy and enthusiasm. I know the initial months can be trying, but if you adopt an attitude that tomorrow will be better, if only by a little bit, it can speed the recovery process. The mental attitude of yourself and those around you can have a pronounced effect on your results. Talk to your family and friends about this and tell them you will not tolerate pessimism and pity. You learned to walk one step at a time and living with an LVD is learning to walk again. There are many support groups on facebook and the web that can be of great assistance if you have particular questions. I am a member of a group that meets online every first Monday of the month and we just chat about life with our LVAD. There are also caregivers here and there is a separate group site for them. please go to mylvad.com and sign up.