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new member post - heart cath and possible pericardiectomy

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Posted 7/6/2010 11:42 PM (GMT 0)
Hi all,

New member and will likely be posting in the pericardiectomy thread in a minute. I am a 26 year old with systemic lupus and I've been struggling for several months with shortness of breath, fatigue (just breathing feels exhausting!), a dry cough, and chest pain/pressure. My rheumatologist was convinced that I had asthma or allergies, but after seeing a wonderful pulmonologist for the past 4 months and having many diagnostic tests done...it appears that the problem is NOT my lungs or muscles and appears to be my heart instead. The recent cardiopulmonary exercise test showed a low stroke volume and based on my history of pericarditis, small effusions (lupus related), and a heart rate that has doubled (or more) in the past 2 years, they now believe that I have constrictive pericarditis.

I still have to get a heart catheterization done -- the cardiologist is getting another baseline echocardiogram first to compare to my old one and the heart cath is supposed to be next and last on the list as far as diagnostics go. Is there anything else that should be done to confirm this diagnosis? Is there anything I should know? I do plan to get a second opinion after the heart cath...just in case. I certainly don't want to have this surgery if it isn't necessary, but I feel so awful and this is affecting my ability to work and do daily tasks anymore.

I'm also wondering what I should expect with the heart catheterization. The doctor told me they'd most likely enter through my neck, but it seems like everything I read talks about them entering through the groin area. I'm wondering what I should expect regarding recovery after the procedure -- should I expect to be ready to work the following day? I have a couple of dogs that I walk several times a day also and I'm wondering if I need to arrange for some down time for this procedure or not. I'm sure the cardiologist will tell me more before they do it, but I figured people here might be able to answer questions too.

Thanks for the help!
Posted 7/7/2010 4:55 AM (GMT 0)
I had an ASD closure done about 6 weeks ago. I'm not familiar with your diagnosis, but I can tell you my experience with the heart cath. Mine was done through my groin. My doctor recommended taking it easy for several days and I had family here to help with walking the dogs and stuff. The main concern after the heart cath is caring for the incision site to prevent bleeding. Because mine was done through the groin, they wanted me to avoid climbing stairs (I do have stairs in my house and the were fine, just don't plan on doing lots of flights of stairs), and very gentle walking. Also, no lifting anything more than 10 pounds for several days. Maybe it was 20 pounds, I can't remember, but either way, walking dogs on a leash was out because they're pullers. My procedure was done on a Thursday and my doctor suggested that I could go back to work as soon as Monday (they don't want you to drive for the first couple of days because of the groin incision), but I ended up taking a week off just to avoid putting extra pressure on myself.

Good luck clearing up your diagnosis and getting the treatment you need.
Posted 7/7/2010 2:01 PM (GMT 0)
Hello and welcome.


Here is a link for you re a heart cath procedure. It is strictly FYI only and each facility and Dr. do things a little bit different.



http://www.brighamandwomens.org/patient/cardiac_cath.aspx
Posted 7/9/2010 10:51 PM (GMT 0)
Hi Taiga,

I have just had a cardiac cathe done. The procedure itself is pretty safe as along as you find an experienced doctor in a Heart Center. I preferred a large Heart Center where doctors would have more experience in handling different cases. U.S. News publishes a list of best hospitals, where you can find a good Heart Center near you.

I am empathetic with you about having to wait for a long time to see a cardiologist. It is a frustrating experience. I would see a different cardiologist that is available because I would need a second or even a third opinion anyway if I were you. The most important is to confirm the diagnosis.

I have developed dry cough, lung and cardiac effusions, asites, decreased tolerance of physical activities, and fatigue due to a constrictive pericarditis, although docs have not found what has caused the disease. I have a pericardietomy scheduled in mid-July. Hopefully it will correct the problem and I can get my normal life back.

Hope this information is helpful to you.

Gary
Posted 7/10/2010 12:27 AM (GMT 0)
Mindbottling -- Thanks for sharing your experience with the heart cath. I appreciate it!

Gary -- Thanks very much for sharing your experience with the constrictive pericarditis as well as the heart cath. I agree with you -- I definitely will want a second opinion after all is said and done. I wish you the best of luck with your surgery!
Posted 7/13/2010 5:46 AM (GMT 0)
Hi Taiga,
I'm a new member like you, thought I would reply as I have just been through a Right heart Cath for what looks like Constrictive pericarditis.
I will try to answer your questions, my cardiologist told me, they could access the neck or the groin, she went with groin for me as she said a lot of her patients dislike having their face covered, when using the neck site, I don't think one way is considered better then the other, more Dr's preference and yours. With the groin it was a longer stay as the leg/legs had to be kept straight in bed for a number of hours, but it was still a day case. I was told to take things pretty quietly for the first few days, no heavy lifting. Depending on the amount of bruising and bleeding under the skin, I was told could go back to activities/work within a few days to a week. You may feel a little sore and sorry around the cath site, but the actual procedure while not nice, is not too bad and they can give you something to help you relax. Just remember to ask! Hope this helps with some of your questions and best of luck to you. I have posted my story under the heart and cardiovascular forum, but please let me know of your progress.

Take care :-)
Posted 7/13/2010 9:10 PM (GMT 0)
heartbeat --

Thanks for posting about your experience with the heart cath! I don't like the idea of having my face covered during the procedure (ugh!!), but I do like that the recovery might involve a little less lying around. I guess I'll just see which one the doctor actually doing the procedure prefers -- might be totally different from what the other doctor has said. I will definitely remember to ask for something to keep me relaxed. I am very good with procedures, but would rather be slightly sleepy for this one if possible. After getting my arterial line (or not so successfully getting it) put in, I'm feeling a little anxious about catheterizations.....that experience was awful and unsuccessful and I think maybe that's why I'm feeling anxious. Usually I'm really great with needles and such!

Again, thank you for sharing this info with me! I really appreciate it.
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