cajngrl

((((hugs)))) Just big ((((((((((((hugs)))))))))))) Who knows why we fee the way we do, sometimes. All I know is that our feelings are legitimate and if it is what we feel then it is what we feel.

I had no idea you had a twin sister, are you identical? My youngest Daughter-In-Law is an identical twin, they look almost exactly alike, though they have quite different personalities.

When is your appointment? What will they be doing? Are you apprehensive? I know nothing about the Ochsner Heart Failure Clinic, but I am going to look it up as soon as I am finished posting this. I wish you the best of luck!! More (((((hugs)))))

Thanks girls!

Ajere, I have a twin sister. We are not identical. My great grandparents had 2 sets of twins. Also, keeping on the tradition, my daughter has twin boys who are 7 years old. They too, are not identical, but most folks cannot tell them apart. Pretty cool huh?

My appointment is Friday, June 27th. It's a 2 1/2 hour drive for me and I've got to be there at 9 am for labs. Fortunately, due to a recent battle with Social Security Disability, I've got copies of all of my records from the onset of my illness, which was a massive MI in the LAD. I was asked today when was my last heart ultrasound. It was last summer. They did not indicate if I would be getting one at this appointment.

Threesthecharm, I hope you are right on target! Because of my diagnosis and current condition on paper (I say this because for the most part, I feel very, very good), I have been advised that it is really never too early to see a heart failure specialist. Even if he says that my current treatment plan is the best thing for me at present. Five years ago, two different cardio docs suggested that it would be inevitable, that I would surely face a transplant one day. I still don't believe it, but...just in case one or both of them end up being correct...I will be prepared! :)

Thanks for the support gals! I will keep you posted.
myra

I took a look at this place and it looks great!!

You know, maybe you should look at this from a little different perspective. You don't need a heart transplant right now. You are doing well. Isn't that a great time for them to examine you? While you are doing and feeling really good, so they can help to keep you there? Because it's not like your feeling good is going to take a nose dive just because you've consulted the great docs at the heart failure clinic. It's kind of like a pre-marriage physical or a baseline mammogram. Lets see what things look like now, so we have a comparison IF, not when, but IF things change down the road. Being PROACTIVE instead of reactive.

I can see how this seems like a defeatist thing to do, consulting with them. Like giving up believing a heart transplant is not a given. You are an extremely intelligent woman, perhaps if you explore why you are not excited you will realize something unexpected.

Keeping you in thoughts and prayers!!

Very enlightening reply ajere! Thanks for tempting my brain a bit. :)

I too think that your reluctance is due to the fact that you are doing well and don't want to rock that boat. I am the same way! But I agree that a consultation is a great idea. Hopefully you will never need the clinic's services. But it certainly won't hurt to familiarize yourself with what types of services are available at the clinic. If for not other reason than to be able to pass that information along to others. I say go for it! You've got me considering doing the same thing!

The post from ajere is excellent. She makes some really good points. Being PROACTIVE is always better than having to be REACTIVE.
I hope your appt. goes very well for you.

I am surprised to see that you are a twin! I have twin sons who just turned 30 in Feb. They are not identical but most people can't tell them apart unless they are around them a lot & know them well. The special bond they have is amazing.
And you're a Grandma?! No way! You have to be the youngest Grandma ever. ;-)

I understand your reluctance about this upcoming appointment, however I am sure that any feelings of uncertainty will be eased. You have a deep faith and you are definitely a partner in your health. This powerful combo has produced some amazing results in your life.

Sorry to hear of a recent battle with SSDI. Was it resolved?

All the best to you

Thanks again ladies for the support.

Huskiefan...thanks for the kind words. Yes, I am a twin and my daughter had twins! The boys are 7 now. I am a young grandma and that is why my grandma name is ZeeZee! Not your typical grandma name.

Swissdots, yes, my recent issue has been resolved. After my MI, I quit my career job and applied and was immediately approved for SSDI. I then accepted a job for our parish priest as secretary. I went over the SSDI income limits (not intentionally at all), my case was reviewed and I was taken off of SSDI. I filed an appeal and just recently won that appeal. I was given back the pay that I was cut off of for the 10 months during my appeal. I continue to work part time and collect SSDI. It is very much ok to work some while collecting SSDI, as long as you stay below the SSDI monthly limits.

So happy to hear your SSDI issue was remedied in your favor and you are back to collecting your benefit.
During the time that you were off did they stop your Medicare in addition to the financial benefit?
As a heart patient (the stressor) of benefits stopping and appealing is an aggravation.
I am very glad though it's resolved and you have some peace of mind.

Blessings in abundance.

I was reading through some posts, today and realized that your appointment time at the Ochsner Clinic had come and gone. How did it go? Keeping you in my thoughts and prayers!!

Yes, my appointment has come and gone. I met with a very nice doc, Dr. Eiswirth. He evaluated my situation, based upon the medical records I provided to him. He suggested a few changes and modifications in my meds. I will see my regular cardio doc next week to discuss those suggestions and changes.

He also recommended that my next step be to take a test called a CPX test, short for cardio pulmonary exercise test. This test will determine the percentage of blood and oxygen that my heart is able to pump through exercise and the increase in intensity of exercise. Sounds much like a stress test. I will be on a treadmill with a mouthpiece for me to breathe into. This test outputs a number and that number tells him what the current condition of my exercise tolerance is also a predictor of what my heart will do moving forward. Or so he says. He also spoke in detail the steps toward transplant, if I should ever need. Nonetheless, I was given a transplant team leader, a very nice nurse. I will go for the test on July 30th in New Orleans.

I will post an update after that meeting. Thanks for asking!

Hi,

I felt the same way as you about attending a Heart Failure Clinic. I realize it is just semantics...but for some reason simply the name " Heart Failure Clinic" made me feel negative and depressed about attending somehow even though my appointments there are great. I actually mentioned that to the staff and I see that recently the name has been changed to The Heart Function Clinic. I feel better about attending already !!! Perhaps more clinics will follow their lead.

Hi, I was one one of those sisters who encouraged you to look further than your cardiologist, and go for the experts. So, I'm glad you took this step! I know it's really hard to think of ourselves in that 'category', with the idea of transplant being applied to us, when we've always been in good shape and are still functioning very well. I totally do NOT want to go the transplant route, and am relieved that for now, I don't have to. Yet I stay with the HF specialists. I'm like you - I have CHF really bad (EF 15), yet I swim, teach yoga, walk, even dance, and don't seem ill. It wasn't til I went to a heart failure/transplant clinic, though, that I've been able to stabilize, after having 5 different reputable cardiologists lead me up the wrong path with the meds.
Please do TRUST the HF clinic's decisions on meds, and have that over-ride your usual cardiologist. It makes a huge difference.
Also, about the cardio-pulmonary bike test you have scheduled - good luck with that! I couldn't handle it, felt so claustrophobic with the mask over my face, so ended up not doing it. I did a simple' walk test' instead, which is still a measure of function but not nearly as conclusive. I hope you're better at it than I was!

When I had heart failure, I hated the diagnosis and going to the "heart failure" clinic. I often wondered why is couldn't be called something else. Failure is such an awful word.

I was very lucky though. I saw a wonderful cardiologist who helped me recover from my MI. I know he thought recovery was impossible but talked to me a great deal about my goals and was willing to work towards what was important to me. When he left clinical practice, he connected me to another great cardiologist who also heard what was important to me. My current cardiologist referred me to an extraordinary interventional cardiologist who was able to clear and stent my blocked arteries. I do not consider myself a heart failure (rather a heart success) but I am forever grateful that I went to that clinic.

I think most doc who go into advanced heart failure have extra compassion and wonderful communication skills. Maybe not all but is takes someone special to do that job. I hope you were able to connect to someone who will not only treat you medically but will help you continue your journey.

Looking forward to hearing what your regular Cardio has to say. Sounds like your appt. at the clinic went pretty well.

Has anyone heard from Cajngirl since her meeting with her regular cardio? Hopefully she's not around this site because she is doing so well. She's always been supportive of many of the people on this site.

I am here!!!!!!!!!!!! Yes, just have so much going on!

And to top it off, I just found out that I was chosen to be trained as a Womenheart Champion educator and attend the training at the Mayo clinic in Rochester! I am so excited.

My regular doc is very supportive of me going to New Orleans. In fact, I've got an appt. with my regular cardio doc this Wednesday. We will discuss the possibility of me coming off of the Amiodarone (fingers crossed).

I am so touched that you all had missed me!

Hi,

I am so proud of you and you are such an inspiration to all of us.

Congratulations! You have been so supportive here we are sure you will do great as an eductor!

Hello Cajngirl,

just founded some of your old posts here and I wanted to ask you are you still taking Amiodarone? I was prescribed this drug after trying numerous others for thousands of pvc's daily but I am so afraid of it's toxic side-effects. However, my GP reasured me that although Amiodarone has a "bad reputation", if followed closely there is virtually no risks. He said he has given it to many of his patients who take this drug for years and feel fine. So, any experiences? Is it true that you have to hide away from the sun and all that stuff? :))