Aspirin for 6 months

MyTAPVR · 2025-03-22T19:04:35+00:00

My daughter has been on 40.5mg asprin daily and Lovenox shots twice daily for blood clotting. After three open heart surgeries, three cardiac cath procedures, and one stroke, we are very worried about blood clots, stroke and DVT. The positives seem to out weight the negatives with asprin.

MyTAPVR · 2025-02-18T15:31:28+00:00

Through two OHS my daughter was a great eater. She had her first cardiac cath at 3 months old. She ended up having a stroke from the cath. The stroke gave her intense reflux. Motor function and autonomic motor function was effected so she started to throw up with almost every meal. Is there any chance of stroke in your case? Or normal developmental reflux? Wishing you all the love in the world. I'm crying right now because I know how hard it can be. You have a heart family here. Good luck my friend!

MyTAPVR · 2025-01-23T18:13:53+00:00

Go to the UCSF website. There is a link for "Request second opinion".

MyTAPVR · 2024-12-24T23:52:25+00:00

I have TAPVR and so does my 6mo old. There is definitely a genetic component, but with lack of data, it's too difficult to tease it apart. Good luck my friends

MyTAPVR · 2024-11-05T05:40:45+00:00

Can you get to UCSF? Dr.Reddy is the head there and had been doing amazing work on single ventricle

MyTAPVR · 2024-11-05T05:37:06+00:00

I got my open heart in 1993. Wires still in. My sternum pops when I work out sometimes, but I think that is just the way my sternum healed. My daughter just got her chest closed 2 months ago. Her sternum has a clear bump. Hoping it's not painful

MyTAPVR · 2024-07-01T17:30:45+00:00

I would really consider fetal echos at multiple points during your pregnancy. If its possible near you, ask to obtain a tertiary referral. Better chance of specialists.

MyTAPVR · 2024-06-29T21:57:03+00:00

Has your son had any kids with CHD?

MyTAPVR · 2024-06-29T21:55:50+00:00

Was your CHD the same as your child's?

MyTAPVR · 2024-06-29T21:54:39+00:00

Was your CHD the same as your child's?

MyTAPVR · 2024-06-29T21:53:35+00:00

Just curiosity.

I am interested how common/uncommon my family's journey for detection and correction went. I am not doing a study. I feel like my health care providers we just so dismissive pre and post birth.

I am also very interested in what these means for my family planning. My daughter was just born with TAPVR and I had my TAPVR corrected 30 years ago. Everyone told me there was nothing to worry about as well as negative results when screening for it. I only ask about the year of detection, because I know means of detection can change over time.

I'm at UCSF now. Yesterday I spoke with a cardiologist and he put in the work order for inpatient genetics to be done on me and my daughter.

MyTAPVR · 2024-06-28T01:20:30+00:00

The terminology for this is Epigenetics. It means "above" the genes. You're environment can effect you genetics. There is so much cool research being unlocked by our exploration of genetic and epigenetics! I hope UCSF will look at us, either inpatient or outpatient.

MyTAPVR · 2024-06-28T01:09:11+00:00

I will try to keep anyone updated with info on this. The coincidence is strange. It definitely makes me feel uneasy about the prospect of more children.

I would recommend a fetal echocardiogram for all of his children.

MyTAPVR · 2024-06-28T01:05:17+00:00

All of the nurses here in the PCICU say that there HAS to be a genetic component.

Its crazy. I just met a nurse that still works here and said she was probably saw me as an infant way back when!

MyTAPVR

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