impending surgery/cardiomyopathy

[jann1033]

ok i think i am just worrying for nothing..i need to have "minorish" surgery( umbilical hernia repair, usually done then you go home, not like a heart transplant or something) and i know cfs ( had for 19+ yrs) can cause cardiomyopathy that isn't detected in the normal way...also due to av malformation( dr is always warning me to get any surgery done as soon as i can as eventually i won't be able to due to the stress av mal. eventually puts on your heart ) and diabetes, I'm right up there for cardiac problems...i am sure i am going to croak right on the table...i know this is because it happened to an acquaintance of ours but i feel really stupid mentioning this to the surgeon particularly since they are not usually all that "people person" oriented and due to the brush off i get 90% of the time with cfs to start with( the cdc campaign to educate medical personal is not imo a big success

normally i would talk to hubby about something that is upsetting me but he is a real basket case about my health already

so anyone know anything about cardiomyopathy that would reassure me ie how they diagnosis it, do they test for stuff like that pre-surgery? i've had surgery before but when i was young and healthier. i need to get the hernia fixed as it's getting bigger and i guess that can be major problems as well left untreated.
thanks

 

[Mackey Mouse]

I hope Pea-n-me sees this and can give you a bit of guidance on this..

I really do not know anything about this, but will say this. I think what you are feeling about an impending surgery is very common. When DH was going to have his huge surgery, Whipple procedure, and I was saying goodbye to him, I was convinced it was the last time we would talk......now I am a bit weepy about this because it was so scary...he, on the other hand, was so positive and consoling us as we are leaving him....so what I am saying here is it is pretty normal to feel that way.. I worried when I had my gallbladder out, will I wake up.. what if they make a mistake.. all that. so try not to worry.

Ask all your questions, the surgeon should answer your questions. How many procedures has he done.. how many at that hospital, how long will you be under, who is the anesthesiologist, what he will use.. we asked a million questions...I think that is what DH felt so comfortable going into this surgery.. plus he loved his surgeon..

I am thinking of you... hugs..

 

[greeneyedchic75]

Hi Jann,
I can understand your concern. I had two have the umbillica hernia repair done twice. Twice because they didnt put mesh in the first time like they should have so a few months later I had it again so make sure you tell them you want mesh to save yourself a headache of another surgery. I can understand your fears about your heart. I also have some heart conditions that always scare me when I have surgery since they always act up. My last hernia surgery I ended up being in the hospital 3 days instead of going home same day. They should check your heart out during your preop, I know that they gave me an ekg and I think they do that most of the time anyway. Discuss your concerns with your dr and during your preop when you meet with the anesthesiologist. They both told me that if something was going to happen that I was in the best place for it to happen and they watched me extra closely. Good luck and your fears are completely natural. I am always petrified before surgery. Good Luck Cara

 

[Pea-n-Me]

anyone know anything about cardiomyopathy that would reassure me ie how they diagnosis it

Yes, cardiomyopathy (CMP) is actually my specialty and I'd probably even venture to say that people with it are among my favorite patients to care for.

I don't know a lot about CFS but I did do a quick study of it just now and I couldn't find anything that shows it's a "cause" of CMP (if you know of a link please post). Clearly, CFS symptoms can be similar to some of those that patients with CMP experience. This seems to be the case with many of the CFS symptoms, which probably at least in part explains why there's so much confusion/ambiguity about CFS. I'll keep my eyes and ears open about it in the future now that it's on my own radar screen.

In the meantime, yes, you will have a preop evaluation which will include bloodwork, an ECG, a chest xray and a physical exam, the latter 3 of which would yield signs of CMP if you had it. There is a test they can do with bloodwork (BNP) but they probably wouldn't do it unless the other three showed some signs of a problem.

There is no mistaking if you have CMP, which is basically a weakening of the heart muscle (ie heart failure) which causes enlargement of the heart (the silhouette of which will be seen on chest xray; and the prolonged electrical conduction of the heart will be seen on ECG) and negatively affects it's ability to pump. There are many physical findings related to CMP that I won't list in detail here, but would absolutely make most people seek immediate medical care.

I know what you mean about surgeons but I find (as a nurse and as a patient myself) that most surgeons really want to do what's right by their patients. I would definitely mention your concerns, whatever they may be, not only to the surgeon, but to the anasthesiologist - who will note it on your anasthesia review. They could probably point out data right away that could relieve your fears, and at the very least they should know you're a little apprehensive. Always be open, even if it's not well received. It will help you feel better knowing you said what you needed to say. I like to pick a surgeon not only for surgical skills but for bedside manner. It's so important.

I'd like to also tell you that I myself am hugely nervous about having surgery. I was a wreck prior to having my breast surgery. It was the first major surgery I'd ever had, and I was sure I was going to die on the table (see - just like you! ). There were a lot of ironies that occurred at that time, but I distinctly remember the day before my surgery, I was laying in bed with one of my big German Shepherds, crying my eyes out. In looking at my beautiful dog, I realized that in that past year I'd put her through 5 - yes 5 - surgeries to remove cancerous tumors on her body. Wow, how selfish of me to do that to her when I don't even want to do it myself - heck, she'd almost jumped out the window of the vet's before one of the surgeries, and I still went ahead. But then it dawned on me that if she could do it, I could do it. Something about that thought caused a calm to wash over me, and even in pre-op the next day when my surgeon took forever on the case before me causing a two hour delay and my caregivers kept leaving as it was the day before Thanksgiving, I remained calm. Truly amazing, since I'd been so scared just prior to this. I felt like that dog was like my guardian angel, and it was one of the last and greatest gifts she gave me, as she herself died a few weeks later of a metastatic brain tumor the same day I lost all my hair from chemo. My dogs, it seems, in one way or another, always give me more than I give them (she was the dog on the left in the first picture of the Photographing Pets thread; and the one sniffing the kitten through the doorway.)

Hope this is helpful, sorry so long. Hopefully I answered your question, I can sometimes get long winded.

 

[JunieJay]

All I can say is I know I'm not the only one thrilled to have you on board, Pea n me!!! Its great to have a health care professional who is not only knowledgeable, but one who can put things in layman's terms for those of us who are, well, laymen.

jann1033, I only had surgery twice, both times c-section, and I was checking my will both times. I can certainly understand your fears. I'll be keeping you in my prayers.

 

[safetymom]

I don't want to be the downer but it is ok to have those feelings. When my late husband went in for a minor procedure he joked with the nurse was this procedure going to kill him? She gave him a real disgusted look and said don't be silly. Well the procedure did kill him.

Talk it over with the doctor and get the facts so you can make an informed decision. We sure weren't expecting his death to happen.

 

[JunieJay]

Safetymom, that is one of the saddest things I have ever heard. I am so sorry for your loss.

 

[Mackey Mouse]

Hugs SM... that made me sad too.. I never really knew what happened.. hugs.

 

[safetymom]

Thank you JunieJay and Mackey. Sometimes you just don't know what is going to happen when you wake up in the morning. Thank goodness we said I love you a lot to each other and our kids. I had a wonderful life. It is still good but different.

 

[Pea-n-Me]

I'm sorry about your husband, too, safetymom. That's the thing about almost all of these procedures - they carry risk. I've seen more things happen than I care to remember. That's why I was so nervous myself.

 

[Mackey Mouse]

More hugs.. now I have tears in my eyes.. and here's the thing, we never hang up with the kids without telling them we love them... or to each other.. those words are important and you know that you said them more than enough...

 

[Pea-n-Me]

I'm not the only one thrilled to have you on board, Pea n me!!!

Hey, thanks! I'm happy to help people understand things if I can.

 

[safetymom]

Thank you Pea n me. I also appreciate you here. I thought I had covered all the bases. You can't be too careful.

 

[Pea-n-Me]

I hope you're not blaming yourself. Things happen sometimes, even when nobody's done anything wrong. I'm sure it wasn't something you could have forseen.

 

[jann1033]

safety mom,i'm so sorry that happened to you and your family. and it's so true you just never know what the day will bring and so heart wrenching that we can't control things and make them better.

thanks to everyone for their help. i feel better knowing they should check things out before hand and will say something if it looks like they won't..probably the silver lining with diabetes.. lots of times drs seem to expect the worse with that and check things they might not otherwise( at least my dr ) kind of like a get "out of jail card" but with blood sugar tests ( )

Pea n me.. thanks for your help as well.... i do think since dr. cheney has been involved with cfs for yrs ( as has the researcher he is connected with a lot, last name starts with K, can't think of it but it might be in the articles) and is not selling a bottle of snake oil, i respect his opinions. one thing that really hit me personally was one thing he said about having to lay down, not sit down, an overwhelming urge to lay flat that i always felt but thought was kind of crazy that he explains ( which i forget the reason behind this second, but it helped me figure i wasn't as loco as i thought )

there are probably tons more links but these are just a few

http://www.dfwcfids.org/medical/cheney/sem0605.htm
http://www.ahummingbirdsguide.com/wcheney.htm
http://www.cfs-healing.info/diagnostic-markers.htm

i get emails news letters from a cfs site called co-cure and this might be the same or an updated article on their home page
http://www.co-cure.org/

 

[safetymom]

I did go through a period of blaming myself. Before he had the procedure I read everything I could get my hands on dealing with it. I even talked to another Doctor about it. My husband had the doctor talk to me before he gave his ok about it. I was almost like a wild woman for awhile over this. I didn't want him to have the procedure. Then my day I was riding down the highway and it came to me that I needed to make peace with my husband over it. I told him that I would stand behind any choice he wanted to make. After all it was him having it. So we have some really wonderful days leading up to the hospital stay. I do have those memories. We got the time to say to each other all the things we wanted to say but didn't have the time for. It truly was a gift.

 

[safetymom]

jann1033, I am sorry I shifted the focus from your surgery. I will keep you in my prayers.

 

[Pea-n-Me]

Thanks for the link, jann. I got enough information there to further my search about the relationship between the two.

The type of heart failure that CFS can be related to is diastolic dysfunction . This occurs when the ventricles can't relax enough to let blood flow into them, therefore less blood flow comes out of the heart leading to a "backup" of blood/fluid, and, in advanced cases, pulmonary and systemic congestion. This type of heart failure is seen less often than systolic dysfunction, which occurs when the heart muscle can't pump enough out because it's too weak and enlarged.

I thought this was really interesting, from here: http://phoenix-cfs.org/PR SP ED IACFS Conf II 07.htm

CFS patients appear to inhabit a kind of in-between ground with regard to heart failure symptoms. Every patient is different, of course, but CFS patients as a group (a) do not appear to exhibit the symptoms of heart failure to the same degree as heart failure patients (i.e. shortened breath, edema are not hallmarks of CFS), (b) they do not commonly exhibit many of the symptoms of heart failure (edema, rales, particular heart sounds, upper right abdominal quadrant soreness, nausea, coughing, wheezing), and (c) they exhibit many symptoms that are not common to heart failure patients (increased allergies, chemical sensitivities, lymph node swelling, muscle pain, sore throat, impaired cognition,etc.). With regard to symptoms they present an atypical form of heart failure.

Both Peckerman and Lerner have suggested CFS patients may have a ’subtle’ form of heart failure that has slipped below the physicians and researchers radar screen. Even though it is ‘subtle’ they suggest it still may have disabling consequences.

It appears clear that if heart failure commonly exists in CFS it does not (a) follow the traditional course of heart failure, (b) that it is accompanied by a set of dysfunctions unique to CFS patients, and that (c) some of the most common compensatory mechanisms triggered by heart failure are not found in CFS (RAA activation, increased blood volume, increased uric acid levels).

While this paper has been about diastolic dysfunction it is still far from clear that tests of systolic functioning; that is, ejection fraction, are normal in CFS patients. In his 2005 presentation Dr. Cheney reportedly states systolic dysfunction is not commonly found in CFS. A study by Peckerman to be published sometime in 2005 is expected, however, to indicate that ejection fraction is dramatically reduced in some CFS patients. This could indicate both diastolic and systolic dysfunction is present in at least some CFS patients.

There is clearly still much to learn about the heart and CFS. Hopefully the funding will be available for researchers to pursue this new arena of interest.

It sounds like you have a significant medical history. I don't know from your posts if you've had any classic symptoms of heart failure or ever had an echocardiogram or other tests on your heart. You might consider consulting a cardiologist who specializes in heart failure so you can find out once and for all if this is something you should be concerned about, or whether you can allay your worries about it for a while. He or she would be able to fully guide your care from a cardiac standpoint. Good luck, I hope you can get it all sorted out.

 

[Pea-n-Me]

I did go through a period of blaming myself. Before he had the procedure I read everything I could get my hands on dealing with it. I even talked to another Doctor about it. My husband had the doctor talk to me before he gave his ok about it. I was almost like a wild woman for awhile over this. I didn't want him to have the procedure. Then my day I was riding down the highway and it came to me that I needed to make peace with my husband over it. I told him that I would stand behind any choice he wanted to make. After all it was him having it. So we have some really wonderful days leading up to the hospital stay. I do have those memories. We got the time to say to each other all the things we wanted to say but didn't have the time for. It truly was a gift.

 

[jann1033]

Thanks for the link, jann. I got enough information there to further my search about the relationship between the two.

The type of heart failure that CFS can be related to is diastolic dysfunction . This occurs when the ventricles can't relax enough to let blood flow into them, therefore less blood flow comes out of the heart leading to a "backup" of blood/fluid, and, in advanced cases, pulmonary and systemic congestion. This type of heart failure is seen less often than systolic dysfunction, which occurs when the heart muscle can't pump enough out because it's too weak and enlarged.

I thought this was really interesting, from here: http://phoenix-cfs.org/PR SP ED IACFS Conf II 07.htm



It sounds like you have a significant medical history. I don't know from your posts if you've had any classic symptoms of heart failure or ever had an echocardiogram or other tests on your heart. You might consider consulting a cardiologist who specializes in heart failure so you can find out once and for all if this is something you should be concerned about, or whether you can allay your worries about it for a while. He or she would be able to fully guide your care from a cardiac standpoint. Good luck, I hope you can get it all sorted out.

no i never have although the one dr( cardiovascular specialist) i went to ( who retired) for the av malformation i have told me something about it can cause some kind or arrhythmias ( if ventricular is the common one it is atrial...i can never remember but it's the less common one) i probably should find a new one. Thanks for your help.