Log in or register to post comments Last Post Anonymous Bicycling Thu, 03/07/2019 - 7:58PM Hi, am I able to ride a bike?, where live now I can ride one around and not worry getting hurt or hit by a car. Thank you for your time and Peace be with you all. Log in or register to post comments 901 reads #1 wayne r. Re Riding Mon, 03/11/2019 - 1:31PM I am quite able to go out cycilng and have managed just over 50 miles in 1 day but I am using an ebike. I tried to use my old normal bike but could only manage about a couple of miles before I was worn out. Hope this helps.(UK) #2 In reply to Re Riding by wayne r. Anonymous Bicycling Mon, 03/11/2019 - 1:40PM Hi Wayne, I don't know what a ebike is?,could you tell me?. I thank you and Peace be with you. #3 In reply to Re Riding by wayne r. Juanita P. Biking Tue, 03/19/2019 - 5:17PM I think that is absolutely Awesome that you are able to do that...Keep it up. I too go to the gym and work out as usual, pretty much pre-LVAD. #4 Anonymous bikes Mon, 03/11/2019 - 3:15PM My doctors said that if I can ride away from auto traffic on surfaces where I'm not likely to tumble, then wear a helmet and to to it if it's important to you. The big issue is the blood thinners and a head injury can cause serious damage. ps to a commenter: an ebike is an electric assist bike. they are very big in Europe. #5 Anonymous Bicycling Mon, 03/11/2019 - 5:34PM Hi Richard, I didn't think about that, I guess bicycling is out. I guess I will walk every day to stay healthy and besides, I can't afford an ebike; Oh well that's okay because I am planning to do a lot of fishing when the weather starts to stabilize. I really appreciate the advice. You take care and Peace be with you. #6 Larrie T. Bicycling Mon, 03/11/2019 - 5:58PM Hi Bill, I have had great success cycling and completed a 35 mile ride six months after LVAD implant. By 8 months after implant, I was riding single track on a mountain bike. This is all using the people powered bikes I had before, not an ebike. As mentioned, the main thing is to be cautious regarding the anti-coagulants. Protect your noggin with a helmet and don't ride trails that create risk of bad falls. While I still mountain bike on single track, there are a few trails I used to ride that are no longer worth the risk given the potential of greater consequences. We documented my first long bike ride and my return to the mountain bike trails on video. You can watch them here: First long ride after implant: https://www.youtube.com/watch?v=G8AVRo1aBdc LVAD Mountain Biking: https://www.youtube.com/watch?v=LXf2Dn8ykgo I found that I continued to continue to get stronger for at least a year after implant. Don't worry too much if the first few months are like running uphill breathing through a straw. Stay active, and your ability and stamina on the bike will only continue to improve! Good luck! Larrie #7 Anonymous Bicycling Mon, 03/11/2019 - 6:35PM Hi Larrie, I've read the replies but I think that I have decided to play it safe and I think I will pass on bicycling ; I think I will stick to walking ; I do thank you though for your thoughts and I do thank you for being so productive on your ventures. I thank you again and Peace be with you. #8 Tracy G. Bicycling with an LVAD Sun, 01/03/2021 - 12:04AM I looked into recumbent road bikes, but again, they can be very expensive. Unlike upright bikes, these bikes are three wheeled, thus more stable & less likely to fall over. They have comfortable seats and easy to ride for those that are physically challenged. They range in price from $1,000 - $2,000 depending on make / model. Supposedly they are faster than bicycles and better for you. I just don't have that kind of money. Maybe I can find a used one.... PS: MOBO offers a model for $350.00. #9 In reply to Bicycling with an LVAD by Tracy G. Juanita P. Bike Riding Mon, 01/04/2021 - 7:21AM I would say if you want to ride a bike, go for it. Live your life. You could walk outside going down steps and fall hit your head, hopefully not. Do your thing..and have fun.. #10 In reply to Bike Riding by Juanita P. Kevin H. I ride my motorcycle. I didn… Sun, 01/17/2021 - 11:51AM I ride my motorcycle. I didn't get an LVAD to live in a bubble. #11 Juanita P. LVAD Mon, 01/04/2021 - 7:19AM I think it is VERY important that the medical profession represent very honest explanation about what you can do and can't do with an LVAD.... in addition to how 'DIFFICULT" IT IS, to carry this big block device on and on. I.e., shoulders, back, neck. I was told " oh you can do just about anything." RIGHT.....please make a list for yourself of what you used to do and now CAN'T DO and what can do. There is a significant variation. I feel that after almost (4) years with an LVAD it has taken a toll on the rest of my body. I was very very active prior to, that's why I'm alive, besides God wanted me here for now, and still as active as I can be. However, dredging around a huge ugly black bag or paying tons of $$$ to adjust another bag to feel normal, is ridiculous. I feel they, meaning medical field, get their patient's while very vulnerable, clouded, and sick to sign agreement for the $l,000,000.00 device and ongoing $ maker. Since plantation, I have been very, very, very sad. No can't say the ulternative would be better. I seen Heaven prior to, was BEAUTIFUL. So i beg to differ with saying I'm alive. Worst decision I could have ever made in my life. I've heard for almost (4) years, we have a total implant coming...wow must be turtle express!! Or FALSE HOPE AGAIN. How about the medical field work on enhancing EF and heart function so we can unhook these devices. Now I know all will not respond, but my God how will you ever know if the interventions are not tried????? Totally regret this recidivism, roller coaster, medical gain having this device. I have a professional degree and active license, but unfortunately, my week is comprised of ording VAD supplies, INR testing, playing juggle with coumadin, etc. AND A HUGE HOST OF DR'S AND COPYS!!!! Also, I might add, making a 1/4 of what I made while working. Thankfully i had enough time into retire. But my God, they keep the bank roll going. I looked at the statement for a phone call about INR level (WOW). IT'S A SLAMMER. The copay's are running me broke. This device is also political to certain hospitals. When hospitalized, in another state, where you have NO VISITORS because of the travel etc. Not to mention, they do EVERY TEST POSSIBLE THAT INSURANCE WILL COVER...LORD MANAGED CARE!! In addition, no medication is used on onset or during to enhance heart function. It is cut and dry, put that device in and will monitor for life...Too obvious and disturbing. But gosh don't upset the apple cart, they don't like assertive patients or patient's with excessive knowledge. I will continue to question, and NO Not able to get transplant antibodies too high. Been down the transplant trail. But again the initial hospital that put the LVAD in, Temple, knew antibodies were high, but still did a $1,000,000.00 workup for transplant. In 8 months, they said nope, too risky...taking you off the list without talking to the patient. They dropped the bomb on an LVAD typical visit. WHILE I MIGHT ADD, DID NOT TAKE VITALS, HOOK UP MEMORY MEMORY COMPUTER, WEIGHT ETC...I SAT IN THEIR EXAMINING ROOM FOR 45 MINUTES, FOR THEM TO COME IN AND SAY "OH WE HAD A MEETING THIS MORNING" YOUR NOT ABLE TO GET A TRANSPLANT TAKING YOU OFF THE LIST. WOW, WOULD BEEN NICE TO TELL THE PATIENT OF INTENT. Wow for real??? I just did your lab request of antibodies, $2,000 per test, prior to coming up for visit. I might add also that they antibodies did drop...but the hospital put the "CART BEFORE THE HORSE." Why would you order a test when not needed?? No answer!!!!! LOL, buyer beware!!! Enough said. I'VE HAD my fill with this device. I wish no one a rough, rocky life, and certainly if your happy with this, by all means God bless you. I had to share my honest feelings and events. This is just a pinch of what went on!! All have a great day! #12 In reply to LVAD by Juanita P. Susan W. Wow so many truth’s Mon, 03/15/2021 - 3:29PM Hello Juanita, Your story is so real. My husband and I can really relate. We are still on bridge to transplant, well I hope so. They have been checking his antibodies as well. Husband (Don) actually had a lvad replacement after first one caused a blood clot in the pump. What a nightmare that was. Two brain bleeds, and two strokes later. It’s been two years in February for us so far. So many feeling with these lvads you are so right. Depression is so true, so many ups and down and hopefully . Never new if we really did the right thing , can only pray he gets a transplant sometime. How can you tell if your antibody testing was too high? We are always waiting for that other shoe to drop, and say ok what’s going to happen next . They say attitude is everything, I do agree but some days are hard. He has short term memory loss from the strokes and some right side weakness. Still waiting for transplant at the Cleveland clinic Ohio. If you could shed some light on the anybody information that would be great. Take care Don a safe Sue from Michigan P.s. wanted to add antibody testing was done because they had to give him a blood transfusion because he was very low . Received 3 antibody test and no more. #13 In reply to Wow so many truth’s by Susan W. Juanita P. Wow, so many truths. Tue, 03/16/2021 - 1:02PM Hello Susan, I'm so sorry to hear about your husband "Don." What a nightmare for you and your family. My God not one stroke but two. My worst fear, honestly. How can you tell antibodies are high?...they do the specific test at the hospital, usually runs $2,000 per test, one vial. They should tell you what the #'s are, ITS NOT A SECRET, but you need to ask. Usually men are much lower than women for various reasons. If you don't know please ask them asap and what their plan of action is besides waiting game while doing heart caths in the juglar every three months. Did they ever list your husband for that Month in as priority. You get one month of of priority transplant. Also important to know blood type, and any other underlying issues. Stay on top of them. They will sugarcoat till the cows come home...and some just plain don't know. They don't tell you this, but transplant is a political process...they make decisions as a team, BEHIND CLOSED DOORS. Actually, they only transplant 3,000 in the country per year. Not enough donors, plain and simple. He has been on list for two years? no close calls? keep on them for sure and best of luck to both of you. Prayers actually. I do believe in prayer, but I am also very assertive and will not let things lay. Actually, you can call transplant and ask them what last antibody test #'s were...They have it in file. Trust me. Turn the heat up in the kitchen!! #14 In reply to Wow, so many truths. by Juanita P. Susan W. Yes We did know about the 30 days Wed, 03/17/2021 - 1:32PM Hi Juanita , Don and I have been told about using our 30 days. They say it’s best to use when you are closer to the top of the list. Not sure when that will be , but we are going to asked to speak to the transplant team on our next visit in may. About the antibodies I have what they call a MyChart were we can actually see our lads . It shows Dons # like B27, class l& ll cPra : 7. Things like that just don’t understand them . Thanks for all your information. God bless you and look luck in what ever you choose to do. Don & Sue from Michigan #15 Angel P. So I was out yesterday,… Sat, 01/23/2021 - 8:40AM So I was out yesterday, first ride outside for a while and had a bit of mechanical trouble, (snapped spoke). While I was fiddling with my wheel, every single cyclist - individuals or groups asked if I was ok, needed help or tools. Kudos to you all, it’s nice to feel part of wider club. #16 Julie A. That's nice.. Mon, 03/08/2021 - 1:49AM That's nice.. #17 Ray .. LVAD Mon, 03/15/2021 - 8:24PM Hey Juanita, I can totally empathize with your LVAD experience. My job exposure to slick operators in the military-industrial complex for a number of years has been an asset for interacting with the LVAD support people and the heart surgeons. They can’t blow smoke or prevaricate and they can’t hand me techno-doubletalk, but they Still try and then get their knuckles rapped (figuratively). For me it was LVAD or &&$$@$!&$, it must-needs be a “bridge to recovery” and LVAD x-install. I’ve been an “LVAD ‘Borg” over three years ... I am weighted lifting with dumbbells and distance walking. So, I can take the corrective surgery if they had the skill at my particular hospital. Trying now to come up with plan B ... finding a surgeon at Cleveland Clinic that can perform the surgery. Sometimes they opt for LVAD when their hospital tells them it’s “too risky for us.” #18 Juanita P. LVAD Tue, 03/16/2021 - 12:50PM Hey Ray, Thank you for your response, I just seen this today. Yes the LVAD experience is a cluster of recidivism hospitalizations, blood work, phone calls, etc... not to mention very risky, risky health issues. The list goes on. No they can't bs me either. I'm on it before they get the phone to their ear. I informed their new doctor i needed an additional medication to improve EF....Its not going anywhere on a baby dose of coreg. That is all i'm on 6.5mg. per day. No diuretics .. I did better with Diovan HTC years ago...and I also workout weights, cardio etc. I leg press 100 lbs, 40 lbs. bicep, curls, etc. No slouch here. Very strong and athletic all my life. I'm so tired of this wagon train and huge expenditures and time wasted... I'm making their dept. look fantastic. Well i've had enough and want this device out. I hope you stay well Ray!! Stay on top of them like flies on you know what. There have been many errors with this hospital as well, breaking confidentiality, HIPPA, etc. Heck I received another's patients medical records in the mail. Going for appt. in April taking to them and giving it back...Wonder who got mine? Dang.