Hello Folks...new member here

[George]

I just want to say hello & introduce myself. My name is George Bafus. I live in Camas, WA, & I'm 50 years old. I had Tetralogy Of Fallot repaired in March of 1965, nearly 40 years ago It was done by the famous heart surgeon, & early heart valve designer, Dr. Albert Starr in Portland OR.
Recently I have been sick with bronchitis, & a CT chest scan was done to check for pneumonia. The good news...there was none. The bad news is, evidence was found of severe pulmonary hypertension. This *may* mean I will need to have a pulmonary valve installed. This possibility has been known of for years, but only now appears to be a real concern. I am going to have a cardiac catheterization done Tues. the 15th to know more about where I stand. That is, unless this bronchitis & now a "fresh" new head cold won't allow it. It may be that I won't need the valve right away, but I have the impression it's a matter of "when" & not "if" I have it done. In either case, I am SO very pleased to find this resource. Oh, incidentally, I also have a type of Muscular Dystrophy, referred to as Limb-Girdle. This is greatly complicating the assesment of my overall cardio health. I walk with a cane, but very much in the way of exercize is difficult for me. Anyways, enough about my troubles for now. Hopefully I'll be able to report that the surgery is not imminent. Again, I'm delighted to have found a resource for "getting over that mountain", when the time comes.
Cheers!

 

[Ross]

Hi George and welcome to the forums.

No sense in getting too riled up until after the Cath. What looks bad one way, may look completely different another. Some of us have all sorts of health issues that keep us from doing what we need to do. I guess we adapt as best we can.

Anyhow, welcome once again. Browse around, ask questions, have some fun with us here in small talk and enjoy yourself!

 

[Nancy]

Hi George and welcome to the site.

My husband Joe is the patient and has had three valve surgeries and two lung surgeries.

AND he also has PH, which was severe a little over two years ago. He is now on a medication Tracleer which can only be prescribed by a PH specialist. It has helped him tremendously. It reduced his PH to a lower stage and he can do many things he wasn't able to do 2 years ago.

His pulmonary valve is still intact.

PH requires the care of a PH specialist, especially in the severe category. I urge you to set up an appt. with one of these specialists. They are scattered throughout the country. Most cardiologists and pulmonologists do not know how to treat PH, since it is so rare. That is why a specialist is so very important.

Here are two links to the Pulmonary Hypertension Assoc. website. The first one is for the message boards, and the second one is for the main page which has links to many resources, including a full description of PH, and links to various specialists throughout the country.

http://www.phassociation.org/Message_Boards/detail.asp?Id=41620

http://www.phassociation.org/

PH used to be a deadly and progressive disease with little hope and few treatments that worked. That is no longer true. There are several very good treatments which can minimize the symptoms, and reverse some of the damage to the pulmonary arteries.

 

[Debrinha GT]

Nice to have you here!

Nice to have you here!

Hi George, my name's Débora and I'm from Brazil. I was born in March, 1965 just around the time you were getting your surgery done. I myself have had three OHSs already, but in my case I was a victim of the annoying rheumatic fever at the age of seven. Well, now that's me again, hoping that my fourth MVR(replacement) can wait a little longer. Anyway, I want to welcome you into our family here and hope you'll find all the information and emotional support you'll need to come to terms with whatever you have to face from now on. Take care and God bless!
Débora

 

[RCB]

Welcome to Starr patient!

Welcome to Starr patient!

Welcome George,
I'm not sure, but I think your are first pt. of the famous Dr. Starr to be a member of the VR.com club. That is really surprizing when you consider what a long and prolific career he has. I understand he is still alive and has a practice-amazing! My second valve was one of his first designs.

As you can tell by the helpful posting we have a great bunch of people,
who sometimes know more about somethings than the drs. who are treating them.

I'm sure you will be fine and good luck

 

[George]

Additional Info

Additional Info

I forgot to mention that at the time of my surgery in '65, my pulmonary valve and artery were extremely narrowed, part of the birth defect. They widened the artery, and essentially rendered the pulmonary valve non functional. It was considered to risky to replace that valve. Rightly so, as I nearly didn't survive the surgery. Omitting the valve was the standard procedure of the day. The result is that over the 40 years, my heart is now enlarged considerably due to what they refer to as regurgitation, or backflow, due to no valve. That is what is *probably* causing the secondary pulmonary hypertension. I called the Dr. office a few minutes ago, & will likely postpone the Catheterization scheduled for tomorrow. I've got a head cold in "full bloom", coughing, sneezing, stuffy... you know the drill. Not ideal for having a procedure done. I'll keep you new friends informed....& thanks for the responses!

 

[Mary]

Glad to meet you George.

 

[geebee]

George,
Welcome. I am sorry to hear of your head cold since it postpones your cath. I am sure you wanted to get through it and find out what's going on.
I hope they can reschedule it quickly so you won't have to wait much longer.
Take care of that cold - chicken soup, vinegar & honey - all the age-old remedies.
Please keep us posted.

 

[George]

rescheduled Catheterization

rescheduled Catheterization

When I talked to the nurse at the cardio clinic, she said, "You sound terribly sick, George"....I am now rescheduled for 2-23. Now I have an extra week to wonder about what the results will be. For now, I just want this cold bug outta here!

 

[geebee]

2/23 is a pretty fast re-schedule for a cath. Be happy that it is not longer. Feel better - 2/23 will be here before you know it.
Colds can be the most annoying things. The last one I had seemed to want to stick around forever.
Good luck.

 

[Diane]

Hi George
I am a fellow TOF patient, repaired by famous heart surgeon Denton Cooley in 1959. I was also left with a non-functioning pulmonary valve after the repair.

About 6 months ago, I was diagnosed with possible PH. I had 2 drs, one a pulmonologist and one a cardiologist, each with a different view of the situation and how they thought it should be handled/treated. I was so confused! I did some of my own research and discovered that I should be evaluated by a specialist at a teaching hospital. So I requested a referral to Stanford Medical Center. The pulmonologists at Stanford put me through a whole battery of tests and then scheduled a heart cath. When they were reviewing my case with the cardiologist that was going to do the cath, he said "WHOA, wait a mintute.....we need to get her evaluated by the Adult Congenital Heart Disease (ACHD) specialist first." When I went to the ACHD specialist, he said "you don't have PH, you have TOF." After some more tests, he said that the right side of the heart is becoming too dilated from the chronic Pulmonary Regurgitation which is what is causing the problem. So the time has come for my replacement and I am scheduled for PVR surgery next Friday, the 25th. I was shocked to find out that I would need surgery again.....I was always under the impression that I was "fixed". When I said something to my PCP (the pulmonologist), he said "well, it was inevitable".....wish someone had told me that years ago!!

If you haven't been evaluated in an ACHD clinic by an ACHD specialist, I urge you do to so ASAP. Regular adult cardiologists are not as skilled in the adults with congenital disease (if they see one or two of us in their practice, they've seen a lot) and even though pediatric cardiologists are skilled in congenital heart disease, they are not skilled in the problems facing us adults many years after repair. ACHD specialists see us all the time. Stanford is the 1st place I've been in my entire life that I was not a "special" patient because of the TOF. You might also want to visit http://www.achaheart.com. It is a site dedicated to adults with congenital heart disease. You will find a lot of valuable information there.

Keep us posted on what you find out. Good Luck!

Diane

 

[Abbanabba]

Hi George - welcome to the board! I also have TOF and found this board when I was told I'd be needing a PV replacement - although I'm still waiting, which is another long and convoluted story! I also have a permanently enlarged right heart from PV insufficiency.

I hope the cath gives you a better idea of what is going on. The waiting is such a drag and your mind always tends to go into overdrive!! Please keep us posted on how it all goes.

Meanwhile, I hope your cold clears up and you start feeling better soon.

Cheers
Anna : )

 

[Debbrn]

Pvr

Pvr

I also have TOF. I had my "repair" in '72. They removed my stenosed pulmonary valve and put in a transanular patch. I lived for 19 years without a PV until I had a pulmonary valve replacement in '90. I also thought that I was "fixed" until my surgery in '90. My doctors and mother new that I might need surgery in the future, they just did not tell me.

Debbie

 

[Debrinha GT]

Something a little different

Something a little different

As many of you already know, I first had my mitral valve replaced for the first time when I was ten years old, in 1975, a couple of years after I'd had rheumatic fever. In those days, I was the first child to survive this kind of surgery which was done by the famous Dr Zerbini here in Brazil using the duramater type. Well, I thought that was it until 1979 when I then learned that I needed to get it replaced again. I even remember that I didn't want to get it done before my 15th birthday party just in case, you know. Anyway, everything went well and there were no setbacks like the ones there had been the first time. Then, seven years later during one of my routine appointments with the cardio while I was living in Scotland, I was shocked when on answering to one of my questions he said that my replaced valve wouldn't last as long as I would. I immediately understood what he meant. Well, another seven years went by before I had the old valve changed once again and now here I am, wondering how much longer it will be until I have to go under the knife for the fourth time. At least this time I've been well aware of everything right from the beginning, and with all the information I've acquired here over the past 12 months, I should be more than ready when my time comes. I wish you all good luck with your upcoming exams and surgeries, and you can be sure that if it hadn't been for VR, I would probably be a very frustrated person wondering WHY ME! Take care and God bless!
Débora

 

[SHerrin Hutt]

Hi George
Welcome to a great sight and a great bunch of friend that will like family in no time. this you can make any of the reuions it a time you won't forget .Everyone will welcome you with open arms. That is so much you can learn from the people that have been there and done that.