pulmonary valve treatment

[doubleaaaron]

Hi everyone. This is my first post since my introduction. I have some questions if that's alright. First For anyone that has had pulmonary valve problems what severity were you at before your doctor did anything? I am moderate right now and with I have symptoms. I have my appt on the 9th so that will tell me what is going on. Last time I spoke to the dr was after getting the tee. After she told me no infection, I asked her about the valve not working. She said we will talk about that when I see you. So That left my mind to wonder. She told me before the tee that the valve could lead to surgery, but of course at the time they were more worried about the infection and rightfully so I guess. Has anyone been like this and not had anything treatment? I have heard around the net this can be left untreated if not severe enough, but I am wanting to hear from people personally about it.

Thanks, Anthony.

 

[epstns]

Anthony,

I don't have direct experience with pulmonary valve issues, so my input will be more general. Most valve conditions, if detected early, can be monitored - sometimes for many years, before any surgery is called for. The docs will watch (via echo-cardiogram, aka ultrasound) the function of your valve. While your condition is graded as "moderate" they will check it only periodically, perhaps annually. As the severity of your condition progresses from moderate toward severe, they may check more often. Once you pass the "severe" markers and are headed toward critical, they will most likely check at least twice a year and also recommend a surgical consult. Through all this, if you start to demonstrate symptoms such as shortness of breath, fainting, chest pain, etc., they may accelerate their recommendation toward surgery.

I am describing this progression so that you can see that at the beginning, nothing seems to happen very quickly. Most mild or moderate valve issues progress slowly. We have a saying around here that ". . . The worse your valve gets, the faster it gets worse." So it is quite possible that it may be a number of years before you get to the point of requiring surgery. I don't know much about pulmonary valve issues, so I can't say if your condition has any potential to remain stable for extended periods of time or if it is destined to progress. My own condition was aortic stenosis, which ordinarily progresses at an unpredictable rate - if it progresses at all. Some percentage of aortic stenosis patients never need surgery - but I'm not aware if that could be the case for your condition. This would be a question for your cardio.

The basic cardiac surgery model can be described in a matter of fact manner. The docs have statistics on your likelihood of death without surgery, at your present statistical condition. They also have the stats regarding operative and post-op death probability. As long as your probability of prolonged life is better without surgery than with, they will wait. I ended up waiting about 9 years, from diagnosis to surgery.

Welcome to the family here at vr.org. Stop in whenever you can. Ask all the questions you like. The folks here have a wealth of first-hand experience, and they are very willing to share.

 

[doubleaaaron]

Thank you for all the info. I greatly appreciate it! I very much enjoy hearing from anyone dealing with some of the health problems that I go through. so any info available is nice to sit back and read. I am not sure if I am severe yet I will find out Monday. I highly doubt it. I already have a pacemaker and they are unable to get control of my arrythmia's with it. Only fixing the slow hear rate. They are very aggravating and things seem to keep getting worse with it. I now have (Thursday to be exact) have had pressure in my chest. I woke up went to the bathroom and almost passed out. I immediately was very nausea's and light headed. I layed back down to my chest feeling like a lot of pressure on it and very strange beats. I have had a lot of crazy arrhythmia's and chest pains before but nothing like that. I am thinking it could be from the valve, but I can't be sure. All I know is they have done everything to my pacer possible and it's not helping. Medicines as well. SO maybe it's time for the valve repair? If So I would welcome it. Maybe then I could sleep at night.

 

[Debbrn]

When to replace the pulmonary valve is very controversial. Different centers use different parameters. Some of the parameters they look at include the size of the right ventricle, the degree of pulmonary valve regurg, tricuspid valve regurg, change in exercise tolerance, QRS interval and amount and type of arrythmias. The last time they replaced my pulmonary valve I had moderately decrease exercise tolerance, moderate to severe pulmonary valve regurg, moderate tricuspid valve regurg, moderate to severe right ventricle dilation, moderately prolonged QRS interval. There have been very few studies on this specific topic. I went to Boston children's because they are doing research and perform a significant number of pulmonary valve replacements compared to other centers.

Debbie

 

[doubleaaaron]

Hi Debbie! Thank you for the information. you know, at first I didn't realize how little the pulmonary valve actually gets replaced at least compared to the others. so I was surprised to find that out. Since my valve is only at moderate I am not sure if they will want to do anything right now or not. However, I cannot exercise no where near like I could in the recent months. I am talking I was super active. Workout 6 days a week and still go to martial arts classes and run weekly. Heck even coming up stairs makes me out of breath most of the time. So I am new to this. Even though I have a pacemaker I know it's not the problem. Everything that can be done to it has been. So it leaves me to believe my symptoms are coming from the valve. I hear it's one of the worst one's if not the worst for causing out of breath and tiredness.

 

[Debbrn]

I have had 4 OHS so they are trying to space them out as much as possible I think. Only 2 have been PVRs. They are hoping this is my last surgery and they will be able to put in my next pulmonary valve via catheter. Some centers are currently putting in pulmonary valves via cath if the patient fits certain criteria. I did not meet the criteria because they wanted to repair the tricuspid valve while they were in there.

Debbie

 

[Guest]

For anyone that has had pulmonary valve problems what severity were you at before your doctor did anything?

Considering I was born without my pulmonary valve, I'd say I was pretty severe from the start! HA! The area was banded when I was a baby, then at age 4, November 1977, my first pig valve was installed.

Good luck with your appointment tomorrow!



Cort | 38.m.IL | pigValve + paceMaker + cowValve | 5 MCs + 1 Caprice Classic
CHD.MCs.CC + RoadTrips.hobbies.RadioShows.us66 = http://www.chevyasylum.com/cort
"This might not be good" __ Chris Cagle __ 'What Kind Of Gone?'

 

[Lynlw]

Hi Debbie! Thank you for the information. you know, at first I didn't realize how little the pulmonary valve actually gets replaced at least compared to the others. so I was surprised to find that out. Since my valve is only at moderate I am not sure if they will want to do anything right now or not. However, I cannot exercise no where near like I could in the recent months. I am talking I was super active. Workout 6 days a week and still go to martial arts classes and run weekly. Heck even coming up stairs makes me out of breath most of the time. So I am new to this. Even though I have a pacemaker I know it's not the problem. Everything that can be done to it has been. So it leaves me to believe my symptoms are coming from the valve. I hear it's one of the worst one's if not the worst for causing out of breath and tiredness.

Hi, One of the reasons so few Pulmonary valves are replaced, is that for the most part, Pulmonary valves problems are usually ones that show up at birth or shortly after and usually a part of a more complex congenital Heart defect, (CHD) like Debbie and Corts and unlike Aortic and Mitral valves, they usualy are not "aquired" first showing up as an adult. I think there are only about 5000 pulm valves replaced each year compared to about 75,000-90,000 Aortic valves. Usually by the time someone is an adult with pulmonary valve problems , they've already had a few heart surgeries and repairs or replacements, so when to have surgery is probably different than someone needing their first pulmonary valve surgery, as far as how severe they are when surgery is reccomended. My son also didnt have a pulmonary valve until he needed his 4th OHS at the age of 17, since he needed surgery then and was close to full grown, they decided to give him a pulmonary valve while they were in there, because pulmonary valves and regurgitation are the one valve you can actually live well with out, so often they wait until the child is full grown or close to before replacing it. Another reason they tend to wait until the problems are severe, is almost everyone reccomends a tissue valve for the pulmonary postion, so putting off surgery as long as possible with out causing perm damage can cut down on the number of heart surgeries they will need thru out their lives. altho now that is possible to have a tissue pulm valve replaced by cath and not OHS, things may be changing as far as when to have it replaced.

Since most people that need pulmonary valve replacements are people who have CHD you might want to check out the forums at the Adults with CHD orgs site http://www.achaheart.org/ there are probably a few more members there with pulmonary valve replaced

 

[doubleaaaron]

I understand a little bit better now. Thank you all for the help! I much appreciate it! I will go check out those forums and see what I can learn from there.