Upcoming First Appt At Mayo

[CLAUDIAW]

Hello everyone. I will be going to Mayo in Rochester, MN on Feb. 12th and 13th for evaluation and to see Dr. William Freeman. Anyone know anything about him? I just got ICD put in on Dec. 20, 2007, after Dr. in Indianapolis found from Reveal implanted monitor an increased heart rate occurrence and MRI revealed my cardiomyopathy was indeed obstructive. Also, after ET study while implanting ICD, found my arrythmias were both Atrial and Ventricle. My husband and I decided it was time to see the specialists. To add to the concern was the fact that my son was found dead in his semi last January, 2007. We knew he also had HCM, but he would not pursue any treatment other than to take Toprol. Autopsy results revealed not only the HCM, but also several blockages. Poor kid was doomed, as he got that heart problem from father's side. Because he had 3 young children, I decided that for their sake, as well as mine, it was time to pursue this to the fullest. If they are at risk, I want them to have as much knowledge as possible so they will be protected from unneccessary risks. Guess I just need some feedback that I am doing the right thing by going! Thanks for listening.

Claudia

[Cynaburst]

Claudia - Sorry to hear about your son.

I know you are doing the right thing by going to Mayo. I am a patient there myself, and had surgery there last year. I don't know Dr. Freeman, but whoever you see there I am sure is amazing. The HCM Center is first rate, and the whole center is amazing. Another friend of mine just came back and she was also blown away by Mayo.

Good luck, and let us know how you do there and what you think. Don't forget your winter coat!

[Midge Rollins]

Claudia, I too am so sorry for the loss of your son. You indeed are going to a top notch facility with a very good HCM center. I have been under their care for 34 years, and they are great. Please keep us informed.

[Reenie]

I have to echo Midge and Cyn. Going to the Mayo for expert advice is a wonderful thing to do for yourself and for your family. I'm very sorry to hear of your son's death. Have his children been screened for HCM?

[heather]

Claudia,

I saw Dr. Freeman 5 yrs. ago at Mayo. I have to agree with the others. It is amazing there! They're so organized. When you get there you will check in and they will have you do all these different tests before you actually see the dr., such as blood work, echo, ekg, etc. Then, you will see the dr. and go from there! Before I left there, I had seen 5 different drs. for different things all related to HCM. I was soooooooooooooo sick when I finally broke down and decided it was time to see a specialist. I had been in persistant a-fib for 3 mos. with very high rates (I was almost a non-functioning person) and had a mini-stroke (tia). I was at Mayo for 2 wks. because after seeing Dr. Freeman and an EP they decided I needed an ICD implanted, so I stayed there for that surgery. Actually it was my 30th birthday present! ha, ha! They are so thorough! They admitted me to the hosp. the night before my procedure. The next day they implanted my ICD and got me back into a normal sinus rhythm, changed my meds up. (I had been on the same meds and dose for 16 yrs.!) I felt like a whole new person when I left there! They told me to make a follow up visit in 5 yrs., (unless I felt like I needed to come back sooner), so I guess it's about time to go there again. I am looking forward to going back. I was so sick when I was there the first time, i didn't really enjoy the town or any of the little road trips we made while there. It's beautiful country up there. It's a big ordeal for me to plan a trip because I live so far away, in NM. I would really like to plan a road trip and head that way! I think next time I go I will take my kids and have them evaluated too! Let me know if you have any questions and I'll see if I can remember! Best of luck and I'm so sorry about your son!

[Sarah]

I'm so sorry about your son. But yes, you are doing the right thing. I haven't met Dr. Freeman, but I've been to Mayo about four times and they are un-freaking-believably amazing. Seriously the best health care you will find anywhere.

all the best and keep us posted.

s

[CLAUDIAW]

Thanks everyone for the input. My husband and I are now more convinced than ever that this is the route we should go. I really am thankful for my Dr. in Indianapolis, however, as good as he is, there is no specialist in HCM. I am glad they implanted ICD, but our concern now is the obstruction and what that has done or will do. I have a 30 year old Autistic daughter and she has been tested (negative). My grandchildren are 12, 6, and 1. Twelve year old grandson has been tested and they said they didnn't see any signs, but I worry because last fall he was very winded when playing football and Dr. thought he might have asthma. Prescribed inhaler, but after test for asthma was done, it was negative. He has also mentioned to me that he thinks his heart "skips" sometimes. Sure sounds like HCM symptoms to me. Bad thing is he lives with my son's exwife and I can't convince her she should pursue it any further. So, I live with the worry! Other two grandchildren who are both girls are to be tested, soon. Luckily, I have a great relationship with their Mom and she is concerned.

Claudia

[anarad]

Hi,
Best of luck on your upcoming trip to Mayo. I live in St Paul so it's a short drive for me. I've had two surgery's there, a myectomy and most recently a valve replacement and repair. Both times everything went as well as I could have hoped. If you haven't already received it, they will send you a packet with all your appointments and schedule. It might seem overwhelming when you get there because it'll say go to this building, then that building, etc but it's pretty easy. And there are a TON of volunteers all over the place that will gladly direct you. Just ask. It looks like a mass assembly line sometimes. Last time I had blood drawn before my appts, I asked how many draws they do a day. The tech told me they have about 30 people drawing at a time and do between 800 and 1100 people a day....
Plus, by time you see the doctor, he has all the test results(blood, xray, echo, ekg). One thing, if you have an echo done, it takes time since they'll do it, then have a senior doctor read it and probably make some adjustments. On average, an echo probably takes a couple hours so bring something to read...lol....lots of waiting.....

Make it a good day
Kent

[Sarah]

big sigh. i'm sorry that your son's ex-wife doesn't get it. that asthma that isn't asthma is a big red flag. you may want to talk to the HCMA office to see if they have any suggestions for how to talk to the mom about getting her son screened.

best of luck at mayo and with your grandson.

s