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Matthew A. Recipient

Pains with vad

Hi, My name is Matthew. Here is my story. I got my lvad in June this year. Not even within an hour later i was receiving an external RVAD to go along with my lvad. I had a coughing fit because I was aspirating due to the breathing tube had somehow weakened my throat. During this coughing fit, the drain tube in my chest cut a vein and now I was bleeding in my chest. So I had to get recracked open again to clean out all the blood. So after this happened my Rvad had started clotting. And I got a pulmonary embolism. They removed the rvad now since the right side of my heart was strong enough to support the extra pressure from the LVAD. But thanks for the rvad clotting in June my LVAD picked one up. They tried drug therapy to break up the clot but this failed and I had to get a new pump exactly one month from getting the first one. So I finally get home, not even a week home I developed a fluid pocket around my LVAD and have to get the lower part of my left ribs reopened up to clean that out. So all within three months a have had five surgeries. So I am sitting six months out and I am having terrible pain in my lower left ribs, LVAD area, and under the sternum. They can't find anything wrong but I'm hurting. Does anybody experience this? I have also lost most of my appetite too. My hands, feet and nose are always cold. Does anyone feel terrible after eating? I have urinated the dreaded coca cola pee before, do you have a fear of going to the bathroom if you have had this pee before? My LVAD clinic is located three hours away, so when I go to my local hospital they don't even know what an LVAD is. Can I relate with anyone on this? I also used to get facet block shots in my lower back for chronic pain but can't because I have to be off of warfarin five days prior to the shots and the heart center says no way. Is there a way around this, some how still being on blood thinners but still be able to go off them so I can get my shots? Thanks for letting me share with you guys. PS my blood type is O positive, I can only receive an O type heart. Does anybody know if they are common and what kind of wait time for a transplant opening? Thanks, Matthew
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Roy P.

Hi Matthew, Sorry to hear your in so much pain. I have an LVAD and I'm waiting for a transplant also (a year and a half now). I have not had rib area pain but I do have occasional shoulder and neck pain which I'm sure is from the VAD shoulder strap. Could this be bothering you? My hands and feet are cold often too. This is just normal for the reduced circulation. Try to keep moving as much as possible. If you feel badly after eating you might want to check your sodium intake. I'm sure you must be on a low sodium diet, if not you need to check everything you eat very closely and buy only fresh foods and food with less than 100mg of sodium per serving. I have never had coca cola pee, I think you really need to contact your doctor about that. I'm sorry you also have back pain. Have you tried easy yoga and / or meditation? It has worked for me when I have thrown my back out. Also you might want to consider acupuncture or acupressure. Both have worked for friends of mine with back pain issues. I'm very lucky that I have a great hospital and VAD clinic. It sounds like you need some motivational support. Maybe try and seek out some counseling or support groups (ask at your clinic). Most of all don't be discouraged or give up. You will get a heart and you will feel better. "Don't stop thinking about tomorrow, it'll soon be here, it'll be better than before!" Best wishes BostonVad
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Pat A.

Where in Boston is your clinic ? Do they have any meetings for people with vads ? Have they said how long for a heart transplant ? Who is chosen first with the same blood type ?
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Matthew A.

No I didn't have the coka colored urint at home, when you get that it means that your pump it chewing up red blood cells which is bad, I should know because I have had this before. I just worry about that happening again, so that is why I worry about urinating. I'm supposed to be on a low sodium diet, but I have been on this diet for over ten years now, site I know what I can and can't do. Plus for some reason my body understand this and I hardly get fluid intake unless I eat a meal that is sodium rich. I'm suppose to make an appointment with my gastric bypass surgeon, I am going to try another doctor inserted of the one that did me up. Doing acupuncture would be nice but my insurance doesn't cover that, I wonder if the cover some kind of message therapist off ultra sound therapy. I'm still having to cross things of the list before I can go on the six month waiting period, then I can get on the list.
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Julie P.

My gosh have you been through so much, You are very strong person. And you are so young. I sure hope you get on a transplant list . My husband had l v a d in August of 2015. He has a lot of lower left rib pain and stomach Nausea, and after the process of elimination we have come to believe that the l v a d device sometimes pushes on nerves that cause the pain and radiating nausea.
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In reply to by Julie P.

johnny g.

Hi Matthew, My husband Johnny was implanted with the Heartmate 3 in February 2016. He was so excited to have the chance to enjoy life. He had a lite stroke after the surgery so he needed a lot of rehab. He has come so far but over the past few weeks he developed the left rib pain that you describe. He said it feels like something is tearing out of his chest. He's been in the hospital for 9 days and they have found nothing. It's concerning that because the device is still under research there may be problems not revealed. The doctors seem to be not too concerned and pain management has become involved. That frustrating because its not a solution and who wants to be asleep all day?
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In reply to by Julie P.

Paul G.

I've had my Lvad fitted about 4weeks ago, am at home now and all seems to be going well apart from sleep. I can't seem to sleep for more than 2 1/2 hours without waking up, but on some occasions I wake with tremendous lower rib pain, it really makes me panic and seems to take ages to die down once I sit back up. I just try my hardest to concentrate on breathing exercises. This is at its worst when I have gone to slip onto my side, which is my natural sleeping position. How long do I have to put up with this and will I ever be able.to sleep on my sides again 😫😫😫.

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MASA A.

Dear Matthew, Thank you for describing your incredibly difficult journey. I hope that you received a new heart by now, as your post is from a while ago. My husband got an lvad two months ago, and about a week ago he started having the horrible rib pain in the lvad area. It is always present, gets better if he is sitting down in a certain position, but as soon as he moves the pain becomes unbearable. Did you manage to get rid of this pain? Did you find out what was causing it? My husband actually has a lymphoma, and it is the chemotherapy which gave him heart failure in the first place. So, he is going through radiation at this time as well, and I am frantically looking for ways to relieve at least this pain, as he must handle a lot more right now than the lvad side effect. If anyone knows how to handle this pain, or why it comes on, please advise. Thank you, Masa
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George S.

Anyone else have extreme pain and numbness in left hand after LVAD surgery? The pain is worse at night causing sleepless nights. Had my surgery 2 months ago, still in rehab.

 

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fanta s.

My husband has the heart mate 3 and have left rib pains do anyone have any solution his lvad team does seem too concerned

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Faiza A.

Hello, my dad had an lvad implanted on January 3, and he is now in debilitating pain. He cannot sleep or function. For those, who have experienced this, how did you solve for it?