Heard from the heart surgeon/

[Guest guest]

Sorry, but I'm posting this to all so I only have to tell it once . LOL

The heart surgeon called today (Dr. Bruce Reitz, Stanford). We discussed RP

at great lengths before we even talked about the heart.

He is really impressed how much knowledge not only I have on the subject but

the whole group and Foundation. He commended us and told me that I should be

proud to have such a wonderful group; and to be able to get such great

information is amazing to him.

Okay, now where to start. He told me that now is a reasonable time to do the

surgery. My heart is not enlarged and I am in good general health. He said

they would usually wait to do this on a non RPer until the heart started to

enlarge, but didn't want to take the chance with me. He admitted he didn't

know alot about RP and would continue to gather information.

He has done one aortic valve replacement on a 30 yr old woman with RP. He

used the mechanical valve. She had a leakage problem and he had to go back

in and replace the aortic root. So he is going to do that with me from the

start. Replace the valve and the root. He said that there is a 1% chance of

leakage with normal people and a 25% chance of leakage with RPer's . He said

this was a HUGE %.

He said the choices are:

mechanical valve/ dacron root

human valve/ human root

pigs valve/pigs root

We discussed the coumadin at great lengths. He said that there are few side

effects and the chance of allergy was almost none, but with me on prenisone

he really had to hesitate. He said I would need blood testing every 3 weeks

because of the pred and that my chances of bleeding were far greater than

someone not on pred. He really didn't want to use the mechanical valve.

This through me off. I told him that the pigs valve only lasted 10-15 years

and that I didn't want to do this again. He said , " Well, I'm not being

rude or telling you anything that you don't already know..... you have to

face the facts,... you probably won't live that long anyway " . WELL, I

immediately had to tell him that he needed to do more research on RP. How

come everyone has us dead in 5 years. ??? It wasn't his fault I guess, he is

reading all the stuff that we read when we are first diagnosed. I told him I

would get him the proper information. I really don't think he was still

convinced.

He told me the hospital stay would be 7-10 days and maybe 5 if I behaved. The

recovery would be a good 3 months before I had full breathing capacity. I

would stay on all my heart meds for approx 6 months and then they would see

what they could take away.

I asked if cutting the sternum would put me into a rib flare. He didn't know

what that was. LOL I explained to him and he said probably YES....for a long

time. Geez.

Told me the chance of infection and healing would be twice as long because of

the pred.

I wanted me to cut back on my pred before he did the surgery. I am at 9mg

now. I told him I can only cut back 1mg a month. He said okay, how about

end of June or July for surgery? Well, I will only be on 8 mg then. LOL

I will wait to hear from him. In the mean time I have made appts to see my

cardiologist here in town for June, My team of rheumy's at Stanford next week

and am waiting to get an appt with my team of cariologists at Stanford. I

will discuss this with all of them and then make a decision. I will trust

the majority. LOL

So, that's about all I know for now. He told me to rest and relax and not to

over do.

so that's what I'm doing. I go to the Rheumy next Thursday and Friday is our

anniversary, so I'm going to try to get a ocean weekend in . LOL Sounds like

a plan to me. Resting on the ocean.

Thank you all for your care, concern, love, hugs and prayers. And most of

all a shoulder to lean on and cry on when I needed it. I have possitive

thoughts on all of this and I will prove to the doctors that with a pigs

valve and me with RP they will have to replace that sucker 3 more

times...lets see.......that puts me at 95??? well, close anyway.

I love you all and don't know what i'd do without each and everyone of you

for friends and relatives.

I will keep you updated as I learn anything. Now I'm off to watch Rich

clean the pool. LOL You all have a safe and fun weekend.

love, hugs & hope