Had my Appointment Yesterday to Determine Whether I am Having this procedure. After Lots of Discussion, I have to be re. assessed. 1) Get over the last excaserbation , still not too well yet, 2) Complete my Rehab so I'm a little Stronger. She was very upfront with me and answered all my Questions , I am a Border Line Case Here, she said There is NO Magic Wand, cannot reverse, and The Valve Insertion is not a Guarantee, I still could be just the same afterwards ! Conclusion Not Enough Research into COPD or Other Lung Diseases, we Know that anyway...Outcome : To see her in 7 weeks with a possible Date for Mid June for the LVR to take place, I haven't signed the Agreement as I feel I need more time to Decide, although she did say she knows of a few people who have had this procedure who were worse than me ! I'm Thinking : Transplant, which I stay on the List and may never get "That" call, or take a chance on this with a low success rating as it is relatively New. I know I have always been a Positive person, Right Now I'm not Feeling Positive at All. What do you all Think ? Love n Hugs to everyone. Carolina XXX
LVR Result.: Had my Appointment... - Lung Conditions C...
LVR Result.
Such a difficult decision to have to make Carolina. It’s good that the person you saw was honest with you but you have lots to think about. Rock and a hard place spring to mind and I have no answers.
What does your husband/family think? I wish you all the best with your decision making and send positivity your way.
Lots of love xxxxxx 💖
Morning Carole & Pete,
Yes, right now, it is such a huge Decision, yesterday morning I was so sure. Amy was straight forward in her replies to my Questions, but I feel she was holding back a little, maybe that's just my suspicious mind. A lot to think about, Talk about, at the end of the Day, it is only me that can make the Decision. I only notified my family last night by wassup, as you know they live in Spain, and my Son and Family in South UK, although Son is away with Police. Hubby , like most Hubbies, says " It's your Decision" and I'm always here for you. I do stay on the "List" which I have been for nearly 2 years, as it is so hard for a Match, as you say It is a Hard Place to be, But I have to be that Rock. I do hope your Both well and Pete's back is less painful Today.
Love n Hugs. Carolina XXXX
Hello Carolina. 👋
Oh my. This is a tough situation. You and I know the risks of transplant and the fact that transplant does not mean we are going to have plain sailing after. There's no guarantee the organs will be a perfect fit, or that our bodies will tolerate them. There's also the waiting. We have no idea how long we must wait, or if we can wait long enough. I know this sounds morbid, but I know you already know this. 😐
I don't know anything about the LVR treatment. Is there a chance you could go ahead but remain on the transplant list just in case it doesn't go to plan? Or, do you have to choose one?
Love and hugs,
Cas xx 🌹
Good Morning Cas my Dear,
Thank you so much. Yes, I went there with a "Yes" in my mind to the Procedure, but came away less positive. LVR, means Lung Valve Reduction, were they insert little valves into the Lung to open up some Air pockets, if they can find any, this is why I am Border line. I stay on the Transplant list regardless, Yes, like you I am aware of the Risks with Transplant, I have now been almost 2 years on the List and I'm not getting any Younger.( A young 66), hence why I was offered LVR if They can do it?. It is a very hard Situation to be in..My Hubby was with me and we have decided to talk more at home about it after my family have come together They do not live here, half live in my beloved Spain and South UK. The Waiting for the Right Lungs is Hard Knowing that the Size, Blood group, Anti Bodies have to be exact, a very hard Ask isn't it Cas. Anyway, I was going to respond to your Beautiful Picture from yesterday, I didn't see much on here being out all day and far too tired last night. I wish you a Peaceful day Cas, Love n Hugs. Carolina XXXXXX
Hello again Carolina.
Yes, duscussion. 👍 I think you need to talk it over with your loved ones. If it were me, and I had the chance to try something less risky than a transplant, I may be very tempted, to be honest. 😔 But then I wasn't in the receiving end of the doctor's speech. 😊 Please keep us updated. *Hug* 💜
P.S. I've started asking my doctor's what they'd do in my situation when I have to make decisions nowadays. They often either change track of offer another option. 😖😓
Thanks for Both Messages Cas. Yes, I know what you mean re 1st one. and I should have done that also re Doctor, but as per usual, I come away thinking " I should have said this & That etc. never Mind, I know I'll get there in the end. Love n Hugs xxxx
One of our members documented his journey through this process. Check out his posts. Here is one he posted as an update a year ago to get you started: healthunlocked.com/blf/post...
No time to reply properly Querida Carolina but it is not a relatively new procedure and i fear your consultant has given you a rather negative outlook for a procedure that has benefited many,the valves can be removed,though removing the coils is much harder,do your research,look at other peoples reviews and experiences and above all don't get deflated or downhearted and stay your normal positive self............love Ski's and Scruffsxx
Querida Skis, me Amigo.
Thank you for your Positive Response, (Did wonder where you were ). Mrs Mummy sent me a Link to John who has in great Detail explained the whole Procedure as he had the same Valves Inserted. His explanations are very easy to understand.
I think my Consultant was just being cautious as she had a New Young Doctor Learning to be our Future Lung Consultant. I felt her holding back a little, I think because of not giving him the wrong impression.
I have not fully got over the last Exacerbation and my bloods were only taken yesterday. I must carry on with Rehab to build my strength.
I have Decided to go Ahead with the procedure, after also, speaking to my family.
Talk Soon Carino, Brazo y Besos a Ti y Scruffita XXXX
Querida Carolina
What’s the transplant list like back home?
Thinking of you xx
Fran 💓
The List is not in my favor Fran, been nearly 2 years waiting for my call. I know that I am on the Active lust, they will only contact me when a match happens, Sad. That a Family have to lose a loved one, but, brave of th to Donate their loved ones Organs. Xxx
Hola Hacienda, I'm sorry to read you're battling an exacerbation at the moment, but glad to read that with the support from this site and your family, you've come to a decision that feels right. Besos y abrazos amiga, 💕.
Pet Scan result
LVR
VATS PROCEDURE ADVICE PLEASE
