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Fri, Feb 7 5:27pm · Pacemaker recipients: Looking for support from others in Heart Rhythm Conditions

She's a trooper, like so very, very many kids, and now adults, who have congenital heart disease. (CHD). They are fighters and of all the ones we met over the years during her hospitalizations at a major Midwestern medical center (she only had her surgery at Mayo's), nearly all wanted to be treated like "normal" kids. They hated to be treated "special". Of course, Mom here has no input or even a discussion with her now about her medical care now, and I don't pry. I don't think that's my business. It's all up to her and my son-in-law, as it should be. But she is near one of the very best med centers in the South now, and I know she is getting the best of care. That's enough for me.

Fri, Feb 7 12:45pm · Pacemaker recipients: Looking for support from others in Heart Rhythm Conditions

Colleen–you know me from another board. But I stumbled on to this one and want to weigh in. My daughter was born with major heart defects–single ventricle, transposition of the great vessels, a 12 percent coarctation of the aorta, and an atrial septal defect. She wasn't supposed to live too long, as kids with such complicated hearts usually lived only a few years and never to adulthood. But then a life-saving surgery and a new perfusion machine, which allowed surgeons to operate on as patient much longer, were developed. She had that surgery at Mayo's when she was 11. (The surgery was only done at four med centers in the U.S. at that time.) Three weeks after surgery, however, my daughter, like two-thirds of the kids, developed a post-op rhythm problem, superventricular tachycardia, (SVT) because the surgeons had to cut through the atrial sinus node and the scarring affected the heart rhythm. When she was 14, her rhythm problems exacerbated. Since her one and only ventricle was bradycardic, she had a pacemaker implant to keep her ventricle at a normal rhythm and medications to control the SVT. Seven years later, when the meds were no longer effective, she had two ablations–the first slowed and changed the SVT and the second eliminated it. She still has a pacemaker for the ventricle, and she's had several replacements. She just turned 47 last month, and has had pacemaker for 33 years. She is doing well and lives a normal, active life. She met her husband in their university marching band (Yes, she marched and played a trumpet at the same time.) Now he has his doctorate in music and is the marching band and pep band director at another major university. She designs marching band formations for him and other band directors. Just wanted to encourage the new pacemaker recipients on this board. You can live a normal life with a pacemaker. She got her first one in 1989.

Thu, Jan 2 8:01pm · CAR T CELL Christmas in CAR-T Cell Therapy

Mayo nurses are the best of the best!

Dec 21, 2019 · CAR T CELL Christmas in CAR-T Cell Therapy

Cheryl–My husband received his T-cells on May 6, 2018. He is still in remission and feeling fine.

Oct 11, 2019 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Yes, he has regular monthly blood tests. He had one at Mayo's last week, of course. Dave sees his new hem/onc in our new town at the end of the month for the first time and will have another lab then. Our former town was about 1.5 hours closer to Mayo's than our present home. But driving doesn't bother us and it is still a driveable distance for us.

Oct 11, 2019 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Dave just had another regularly scheduled checkup at Mayo Hematology. He is cancer-free since the CAR-T in May-June 2018. But he's still immunosuppressed, as his pneumonia in January really affected his immune system–which hadn't really rebounded from CAR-T, of course. But RBC and platelets are back to normal range and his WBC, neutrophils, etc. counts are improving as time goes on. He hasn't been sick or had any infections since–so that is good. But since he hasn't had any repeat infections, he is not eligible for any gamma globulin protocol. But we are glad that he is feeling fine and continues to work. The big change we have is that he has a new job and we have relocated. A word of warning to other cancer patients/those with serious illnesses: It can be against the law for your employer to fire you because you've been sick, and, particularly, you've been increasing the company's health insurance rates. But what they can do is "eliminate your position" and downsize you. The company may give you severance or other benefits for a while to, well, CTA is the usual acronym. Then the company changes the name of your position and hires someone else to do the same job you've been doing. It's legal. Of course, then the person who's been downsized my not be able to find another job, afford the COBRA; or, if another job is found, have health insurance as comprehensive as what he/she had at the former job. But sometimes things do work out even after things like this happen. The moving process is never easy or smooth; finding a new house, going through the buying the new one/selling the old house, dealing with all the packing and moving. And it always it takes several months for all the boxes to be unpacked and updates are finished (like painting walls!). But one gets through it. Things could be worse.

Jul 4, 2019 · Delayed pain after bone marrow biopsy?? in Blood Cancers & Disorders

Dave has had three bone marrow biopsies, but only had slight pain on the days he had them–nothing afterwards.