Gutted :( can anyone help??

[Sarah_Louise]

Hi everyone,
Hope your all well,
I got my letter from clinic i went to last week and im gutted!
Pre op the peak valocity over the right ventricle outflow tract pulmonary valve was 4.4m/s my post op echo showed the valve was a lot better at 1.4m/s but now my numbers are back up at 3.8m/s after only 4 weeks and the letter says "there has been a residual increase in the right ventricle pressure" what does this mean?? has my pressure increased rather than decreased?? can anyone help? the letter talks about my aortic valve leaking, the arythmia's i've been having, my crap circulation and problems with my legs and then goes on to say there's nothing else they can do for me at this point just OHS in the next few years, and there going to keep a close eye on me, see me in 6 month but sooner if needed!
Sorry for the rubbish post! Hope your all okay! and thanks in advanced to anyone who can explain further,
Sarah xxxx

 

[Duffey]

Hi everyone,
Hope your all well,
I got my letter from clinic i went to last week and im gutted!
Pre op the peak valocity over the right ventricle outflow tract pulmonary valve was 4.4m/s my post op echo showed the valve was a lot better at 1.4m/s but now my numbers are back up at 3.8m/s after only 4 weeks and the letter says "there has been a residual increase in the right ventricle pressure" what does this mean?? has my pressure increased rather than decreased?? can anyone help? the letter talks about my aortic valve leaking, the arythmia's i've been having, my crap circulation and problems with my legs and then goes on to say there's nothing else they can do for me at this point just OHS in the next few years, and there going to keep a close eye on me, see me in 6 month but sooner if needed!
Sorry for the rubbish post! Hope your all okay! and thanks in advanced to anyone who can explain further,
Sarah xxxx

Sarah, I don't much about the pulmonary valve so I'm afraid I'm of little help. However, is it possible for you to talk to someone at the clinic and get the answers to your questions? This is NOT a rubbish post; just one that I don't have any answers for.
Hugs,
Mary

 

[TheGymGuy]

Sarah, I cannot offer much feedback on their note, but please stay strong - and see someone that can explain this better. You have been there for all of us and we will be here for you to support you in any way that you need. If you want/need something please do not hesitate to ask.

 

[neil]

sarah sorry you are having a rough time, you need to talk to your cardio an expert in all these figures, unfort no one on here is in that field, stay positive sarah ,

 

[ottagal]

Hi everyone,
Hope your all well,
I got my letter from clinic i went to last week and im gutted!
Pre op the peak valocity over the right ventricle outflow tract pulmonary valve was 4.4m/s my post op echo showed the valve was a lot better at 1.4m/s but now my numbers are back up at 3.8m/s after only 4 weeks and the letter says "there has been a residual increase in the right ventricle pressure" what does this mean?? has my pressure increased rather than decreased?? can anyone help? the letter talks about my aortic valve leaking, the arythmia's i've been having, my crap circulation and problems with my legs and then goes on to say there's nothing else they can do for me at this point just OHS in the next few years, and there going to keep a close eye on me, see me in 6 month but sooner if needed!
Sorry for the rubbish post! Hope your all okay! and thanks in advanced to anyone who can explain further,
Sarah xxxx

Sarah,
I wish I had some answers for you and I would certainly be asking my cardio a few questions. Do you have a follow up with him/her at some point soon? Also, echos have been know to have inaccurate readings? JUST in case, this is what it is, could you possibly get another one to confirm?
Thinking of you and hoping you get a some answers.
"hugs"

 

[Sarah_Louise]

Thanks everyone,
I've another appointment in April where i'll get another full MOT!
xxxxxx

 

[Lynlw]

Sarah, I'm sorry to hear you got a letter that caused stress, Its hard to guess what things mean without all the numbers and even then as others said, echos aren't the best. Can you put a call int one of the nurses that has been part of your heart "team" for a while and ask them to help explain things better than te letter, or most people here can? I would probably try that instead of worrying about things for the months until your next appt.

My guess would be like Justin, since you've had so many surgeries and interventions especially on the right side, its even harder to get good reliable info from echos. and dont forget, this close to having the stents and valve placed things can still be settling down and might improve for a while. I wish I could help, but velocity isnt one of the things we keep a eye on with Justtin's pulmonary valve and conduit.. Usually we focus on the gradient and size of his right ventriicle and even there, like you we never compare his results to "normal" values but his own oh and sometimes, depending how he was before interventional caths or surgery is how his oxygen levels are or even his "color". The one thing MAYBE I can help a little with is when I read, and the letter says "there has been a residual increase in the right ventricle pressure" I took that to mean that atho your heart HAS improved the pressure is a little higher than what would be "normal" in a persn with out heart , or even right heart problems and not that YOUR pressures are higher now than they wre before the interventional cath. I may be wrong, which is one of the reasons I hate when docs send letter with general info but not actual numbers to compare to before this cath or even after your conduit surgeries.

Hopefully you can get some clearer answers, but remember even tho it stinks you have to be so strong, that you really ARE strong and can deal with anything thrown your way. How do you feel now? Do you feel different than befoe your cath? Hopefully you have more energy or arent as tired as you were before.
and can enjoy life as a young adult even more. BTWHow is your leg doing? take care you are always in my prayers Lyn

 

[haggis basher]

Hi Sarah
So sad to hear about the 'complications'. I cant say that I know how you feel, as I have only had a valve replacement, but I do feel the pain in your writings, and if I was close-bye, I would give you a big hug.
Take Care
Brian

 

[escargome]

Sarah,
There is no such thing as a rubbish post. Getting that letter and having questions can cause stress on anyone. You have a right to be confused and uncertain. I only wish I could at least have you close enough to give a hug. Is there anyway that you can have your questions answered before your April appointment? I know that you are stronger than I could ever be. I will pray that comfort and peace come to you soon. Sending you huge huge huge hugs.

 

[Greg a]

Hi everyone,
Hope your all well,
I got my letter from clinic i went to last week .........................................Sorry for the rubbish post! Hope your all okay! and thanks in advanced to anyone who can explain further,
Sarah xxxx

The person who authoured the letter should be able to explain it to you !! The beauty of NH is that you should be able to demand and get results .....there is no stronger advocate than you BUT if you need help petition the NH Ombudsman http://www.ombudsman.org.uk/ they are there to help in any way they can .