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Maurice S. Caregiver

Need New Program

Fri, 03/02/2018 - 2:15PM
Wife was implanted 3 yrs ago with heartmate 2 and has since had 3 drive-line revisions due to infection. We have been told transplant is not a option and have been forwarded to palliative care. We have been commuting from Kansas City to STL sfor care, but this has drained all our resources and support. We are looking to move to Arizona where we have more family and support, but have been told by current coordinator that no other program/doctor will take us on as a patient!! We have read about the various infectious Disease breakthroughs and we are not ready to give up. Is Lvad care and treatment transferable? Will another hospital care for us even thought we were implanted elsewhere?
1982 reads
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Gregory D.

Fri, 03/02/2018 - 2:53PM
Banner Good Samaritan Medical Center 1111 E. McDowell Rd. Phoenix, AZ 85006 United States +1-602-839-2400 Get directions (1.5mi) Supported devices Heartmate II® LVAD Mayo Clinic in Arizona 5777 East Mayo Boulevard Phoenix, AZ 85054 United States +1-480-342-2270 Get directions (16.0mi) UCSD (University of California San Diego) UC San Diego Health – La Jolla Sulpizio Cardiovascular Center 9434 Medical Center Drive La Jolla, CA 92037 858-657-7000 ID Doctor for UCSD Dr. Aslam La Jolla - Perlman Medical Offices UC San Diego Health - Perlman Medical Offices 9350 Campus Point Drive La Jolla, CA 92037 (619) 543-6146
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Maurice S.

Fri, 03/02/2018 - 3:08PM
Thank you soo much! im currently in talks with the Mayo Clinic in Arizona about accepting us as a new patient. With this Mrsa, other than the antibiotics what other options are available as far as treatment for this infection? current docs just keep throwing anti-biotics at us!
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Gregory D.

Fri, 03/02/2018 - 4:42PM
The antibiotics are the standard set of in the box tools, for pretty much all of the hospitals. There are a number of other treatments that can be used and are very successful, but usually only available at teaching hospitals. Such as UCSD or Ceders or UCLA. Please provide me your email and I can send you my case study on Phage Therapy. And feel free to share it with your LVAD group.
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Patrick S.

Mon, 03/05/2018 - 11:07AM
Hi I have been following you & your wife's trial & tribulations. I am 5 yrs post transplant but had MRSA in drive line infection as well as all other forign metals obects in my body ie: stents, defibrillator/pacer and wires. I was treated at Tufts MC in Boston & had to kive their for the duration (1YR) until transpalnt. What is the reason they are telling you she is not a candidate for transpalnt ?Infection , age , other ? The MRSA was treated with Seftaraline (SP?) which is a drug just for MRSA. I was the first patient anywhere to recieve that drug while on an LVAD. It cleared up the MRSA to virtually nothing which allowed the transpalnt to move forward with no issue ! There was a side afeect which may preclude another hopital to use this drug on anyone else. My LDH (clotting factor ) went through the roof (over 3300) so they feared a stroke or MI at ant time so it forced me to stay in hospital. They may have figured out the correct doseage by now but its worth asking Mayo about it. I am sure that UCLA or Cedars have used the drug to combat their VAD patients. Just thought I would throw it out there. Prayers to you both. PJS
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Gregory D.

Fri, 03/02/2018 - 4:39PM
Mr. Sloan, yes other LVAD groups will take your wife on. I know that here in SoCal Cedars up in LA, Sharp Memorial (Dr. Hoagland, My LVAD Dr.) in San Diego and UCSD will all take on new LVADs. I have worked with Sharp since my implant and this past year with UCSD, because of my massive Pusdamous infection. I have met other LVADs from both the May and Good Samaritan Phoenix. And their teams are all excellent. As too a Transplant, there are many factors that weigh on whether or not a given hospital will or will not perform the surgery. Age, overall health, and if the LVAD meats the National Transplant criteria. Lastly, I have found that no matter how good an LVAD group may be you must be, (or your wife), must be your own advocate for the care that she needs. Any thing else we on this forum can help you and your wife with please let us know. Greg
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Maurice S.

Fri, 04/20/2018 - 1:08PM
Thank you both soo much for your interest and comments. Currently we are still under the care of barnes jewish hospital in stl, while we live in Kansas City 4 hrs away. Our current LVAD coordinator seems to have taken a disinterest or something to our situation. We rarely hear from her and for the past 3 weeks most if not all of her directives have led to discomfort and or complete hell for my wife. As of late for the past week she has told us to take so much warfrin that her inr is at 10 when it should be 2-3 and she casually tells us that just stop taking it and if you dont feel better by next week come get admitted!!? Arizona has started looking into our case but has been put on hold, until we can get AZ state insurance or private! Scared to make a formal complaint about this doctor for fear she really might get nonchalant or worse, not to mention we are a ways away from being accepted/finding another program. So we need this program! I feel like im watching my wife die in front of me and its NOTHING I CAN DO!! Greg if and when you can please send me what you can!!!?! Navi, can you please send me any info you might have on your MRSA treatment and what worked for you.........working on our last Stand
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Carol D.

Mon, 05/14/2018 - 2:51PM
My Brother was at deaths door with a 2 year driveline infection of Pseudomonis. (or a super bug) when he had his Heartmate2 implanted 4 years ago. After 8 various tries with antibiotics ( by the way he's 76) he was reimplanted with a Heartware LVAD. Her INR shoud be 2.0 to 2.2. Please get to a Hospital that does Transplants and LVADS. You have a Dr. that is not serving you well. My Brother must go to the LVAD Clinic once every month. He gets his blood drawn every 2 week in home. The Lvad Team calls up as soon as they have the results , and if any meds need to be adjusted, they let us know immediately. We live in NYC. Our Hospital is Mt. Sinai. Manhattan. Too bad you couldn't get her to our God gifted Thoracic Surgeon. He is a true life-saver. People come in from every part of the Globe for their Cardiac and Pulmonary Physicians.
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Courtney V.

Mon, 05/21/2018 - 1:35PM
Also, speak to the hospital patient advocate, or ask for a supervisor, if you feel that you aren't getting the care or attention that you need! Sadly you have to be pushy and advocate for the best care in some hospitals.
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Anonymous

Tue, 04/24/2018 - 2:35PM
Hi, I'm Kybill54 and read about your about your wife and I would make a formal complaint. I don't care about what they think, it's your wife's life !!. Tell them that if they don't do some thing, that you will take her to Jewish Hospital in Louisville KY. , And you will know that she is getting the proper care and attention she needs. I had my LVAD for 2 1/2 yrs., and I'm doing GREAT!! . The people there are wonderful !. My prayers are with you and your wife. Take care.
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Courtney V.

Mon, 05/21/2018 - 1:32PM
I'm just wondering why you didn't go to KU or St Lukes since you are in KC? My Dad lives in southeast Missouri but went to Baptist Memorial hospital in Memphis, TN for his lvad. In my humble opinion they did great.