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Pains in chest

My son says that he has pains in his chest alot.  Has anyone else experienced this during tx? Could it be heartburn? He brought it to his doctor's attention and his doctor told him that he never heard of anyone complain of pains in chest.  He told him to go to the ER for a chest xray and an EKG which my son feels isn't necessary.  He's had it for almost 6 weeks now!  Should I be worried?  
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446474 tn?1446347682
Great post Laura. You have definitely opened my mind about a lot of things. I really appreciate you sharing your experiences and thoughts because I have never seen anyone post about these things before.

I am more part of the transplant community then the hep C community and I realize we transplant folks have a different sense of straight talk because of our situation. For many of us it is a life and death battle so it normal for us to speak bluntly. We talk directly about how we feel and no one takes offense because we are all on a sinking boat together. Or have already got a transplant and they don't need to be told that liver disease is a life long condition that we will all live with until our dying day. Which hopefully is somewhere far off in the future.

Of course there are the people with serious liver disease that do come on here asking for help and I think I have been able to give them some assistance in finding the medical care they need and in explaining what is happening to them. Hopefully it helps them also knowing that they are the only ones going through what they are and that there is help out there and no one has to die even if they have liver failure. The transplant option is always there are long as they are willing to do the work and be compliant with the requirements. I.E. No alcohol, no drugs etc.

Thanks much. I will have to digest your posts more and reevaluate how I can be more helpful here.

Have a good day!

Hector
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446474 tn?1446347682
Yeah that sounds like a good idea (about emailing your doc) so at least you can reach her in case of emergency. I understand things are tough now with funding for clinics. And there were already on a tight budget with limited resources.

I don't know if you know this but many of the major hospitals and even insurance groups are now getting software so that their patients can contact their doctor via messaging and the patients have access to all of their diagnostic tests on their home computer when they become available. It is definitely a good thing as far as communication between patient and doctor and patients can be more educated about their own health status. This is a service that Kaiser has had for a long time and a few of my friends are Kaiser patients and they have all talked about how great it is to have.

An example for patients treating their hepatitis C, they would have available online all of their blood values... viral load, red cells and white cell counts, platelet count etc. Not only can see see each individual blood test but if you click a button it will show a graph of all of your blood values over time. Makes it real easy to see what is going up or down over time and then you can print it out and take it to your next doctor's visit or send a message to your doc asking them anything you have a question about.

Communication between patient and doctor is vital in my opinion for good healthcare. It is nice that the information systems are finally making a positive contribution to that aspect of the medical system. It has already changed so much of the storage and transfer of medical records and data within and between medical facilities and the improvement of digital diagnostic equipment over the years.

Take care!

Hector
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Avatar universal
Thanks, Hector. Yeah, so far my Health Insurance has not let me down, and they have approved my Procrit, etc, and I have low co-pays, so cant complain.
  Your Doctor sounds great, and I hope you have a good Care-Giver, to help you, as well.
   When you describe how easy it is for you to contact your Doctor, that is the thing that I do sometimes have a problem with. I should ask my Doctor if she has an e-mail that she responds to, because that would make me feel so much safer, while in treatment, since her Clinic is only open two days a week, because of budget cuts.
  I have this ph # for her, but it doesn't have a message on it, so I dont even know if it's correct, and she doesn't call me back, when I leave a message, but so far, everything has gone smoothly with my treatment.
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Avatar universal
Hector,

                First, thank you. You definitely do make me think about things a little more and in a different light which I appreciate. Not just with this thread , but with many. You always seem to have very good advice to give those in need which is very respectable.  I think some people mistake some of the advice given as an attack (like in some previous threads I will not mention;p) but what they don't realize is we wouldn't comment if we didn't care . Thank you for providing many great answers that "get people thinking." There is always space to grow and room to learn.

(Also to the original poster thank you for letting us try to figure out this doctor thing..hopefully some of Hector's advice and well wishes has helped you decide on the best care for your son's illness.)

       So with my gp...I have not recieved any care regarding my hep c, per say ...but he has done things that show me he is really in my corner and looking out for my best interest. (Which he should be) He was there for me when the np at my liver docs office seemed to disregard the 4 wk bloodwk I asked about. I never got to speak with the liver doc. My gp personally called me back himself and had a lab slip to me the next day.
Also, another thing that impressed me was when I got to 8.1 it was my gp who called me personally again, telling me how anemic I really was, and he was concerned with how I must be feeling. He had been getting copies of the weekly labs I have, and has been paying close attention. This makes me feel relieved! So if something is missed by one doc with my levels I know my gp is on it!
You're right...a doctor should never be too busy for his patient. I would like to hope maybe he has been putting so much time caring for his patients that are sicker than me he assumed I was okay since I rarely have needed them on tx. I learned from the "trustworthy" and "knowledgeable" long time posters on here how to treat my sides so far at home. I would rather ask someone who is having flaming butt problems from incivek how they fixed it more so then I would want to ask my doctor. It's not that I don't trust his opinion...if any sides snowball or cannot be fixed at home I know he should be notified, but so far I feel like my awareness of tx protocol (thanks to all of you posters) has really just insured that nothing will be missed in my certain situation. And the sides have all been manageable with the advice given to me here.
Now if I was not 0/0, or had liver cancer...and was not getting the care I should I would be out the door in a heart beat. I pray that I never have to find out how good my doctor really is that way. Since I'm an adult, I realize by having hcv this could happen. Treatment could fail. I guess I'm just praying to get through the next 14 weeks of tx, svr and walk away with this with no damage. That is the best case scenario. Worst case: treatment fails, hcv thrives and I'm a sitting duck for damage until new treatments are available. I think if I Don't have any other issues with a busy doc and can do the best case then my doctor will work out great, but if I do get damage or cancer he better be on top of that!  Yup, he better be letting me cry all over him. and giving me supreme care or I would be out that door!:)

Your doctor sounds amazing..I am so happy you have someone that wonderful! Thanks for making me think about it, really. It does open my eyes to my hcv's future. As we all know it can take us anywhere! We better be ready. (AND SO SHOULD OUR DOCTORS!)

Thanks Hector, and best wishes.
;) Laura  
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446474 tn?1446347682
First let me say first I am very sorry for the difficult life you have had. It makes you feel sad for you and disgusted by the people who took advantage of you. We have all had own issues and unfortunately we don't get a free pass on our medical issues because we have paid enough life dues already. Life ain't fair. I am sure you know that. But it is manageable.

So you say your medical insurance stinks? How bad can it be? It is company insurance right? In California health insurance has to provide at least a minimum level of services to be sold in the state.

In Oakland there is no good Gastros who know how to treat hepatitis C? Impossible. It is not like we are in Timbuktu. The Bay area has one of the highest rates of chronic hepatitis infection in the country so Gastro are not in short supply here.

As far as San Francisco. You talk about driving... What about BART??? How long is the ride? 30 minutes max. Seriously.

As far as debilitating symptoms…do you know what it is like living with End-Stage Liver Disease and liver cancer? It aint pretty believe me. I am no “pie in the sky” “everything is hunky dory” type of guy who doesn’t know what goes on in the real world. I have been totally disabled for almost 3 years now. I can hardly walk many days because of the fatigue and nausea and a number of other symptoms of my disease. Ever have chemo? Talk about feeling ill? I can talk about pain all day but it is a waste of time. I don’t know what is going to happen tomorrow, I live everyday knowing I may not have many days remaining. I am 59. So I don’t dwell on coulda, shoulda and feeling sorry for myself.
Hey this is it. This is our life now today. No one is guaranteed tomorrow. As they say this is “as good as it gets”. It is not like we are kids and when we grow up we are gonna do this and that and be happy. We are grown up. We have to learn how to be happy now. Not happy go lucky stupid but secure in who we are and striving to do better ever day. This is our lives for better or worse. This is no rehearsal!
Don’t get me wrong, I would never compare what I have been through to the challenges you have faced. You make me realize get how lucky I truly am. And I  know that no one just gets over decades of abuse overnight or ever for that matter but we learn to live with it and see how far we have come from that nightmare life. We all come here with our own baggage ‘cause we are human. You might be surprise by what others here have been through. Just because I have a College degree doesn’t mean I don’t know what abuse and self hatred and self abuse is. I didn’t get hepatitis C from being a boy scout.

You have changed your life right? You are no longer using. That is huge! Not everybody can do that. But you have done it. Give yourself some credit. Stop listening in your head to all those sick people that told you were no good, worthless, etc.. Look at their lives. What happened to all those who thought they were so smart. I bet they are not living happy lives on the Rivera. I’m I right?  They were just trying to drag you down into the hole that they were in cause they needed the company so they didn’t feel so insecure seeing someone smarter, happier, better looking then they were. They weren’t happy until you were as miserable and screwed up as they were. They were sick people. People that abuse others are sick and wanted to take out their problems on others instead of facing their own demons. Leave them behind. The past is gone and will never be again. They can’t hurt you if you stay away form their kind and start being with people who like themselves and like and respect you for being you. You are worthy. In time I hope you come to believe that.
You are an adult now. It is time for all of us to take responsibility for our own lives and care for ourselves.

If one doctor won’t help you. Then find someone who will. The world is not as bad and hostile as you were told it was. There are people who will be glad to help you especially in the Bay Area. Surely you know the Bay Area, especially around SF has more services of all kinds including health services then probably anywhere else in the U.S.

I hope you understand what I had to say and some of it made some sense to you.

Don’t ever give up and don’t let anyone disrespect you. Command respect as a human being. Demand the help you need. Just take it one day at a time and keep moving in a positive direction and in time things will get better.

Be well

Hector
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446474 tn?1446347682
Thanks Laura!
I really appreciate hearing your point of view. So I see it is not all black and white. Doctors are human and make mistakes so you try to look at the good sides of things they have helped you with plus you have talked and expressed yourself to him/her and feel you got their attention. Plus you feel that you might make things worst if you changed your current situation. That all makes sense to me and like you said, we are all different personalities and deal with things in our own way.

I really must thank you for being so straight forward and honest. I hope it helps me see things from others points of view rather then only through my  own experiences and reference points.

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If I might say just one thing...I appreciate your GP looking out for you as a person but they have no expertise in hepatitis or liver disease and shouldn't be relieved on for medical evaluation. Anyway...I am glad someone is in your corner. Nor family or friends to advocate for you? So you are basically on your own dealing with your hepatitis? Sorry that is tough.

Can I comment on...
"I think my liver doc, has been pretty "busy" during my treatment."
I hope this doesn't come off as arrogant or just plain stupid but I have seen this type of comment made numerous times by posters and it bothers me.
Can I tell you something from my experience?  Yes, my situation is different then many on the forum here because of my End-Stage Liver Disease and HCC (liver cancer). So if my hepatologist was too busy for me or made a mistake on something I could be in very serious life-threatening trouble. I started seeing my hepatologist 4-5 years ago when I had compensated cirrhosis and I first tried to treat my hep C treatment. My doctor ALWAYS had and has had “time for me” since then. If I have a question she told me to contact her directly. No NP or anybody else. I can email her at 3 AM and that morning I will hear back from her.
She is internationally known in the fields of hepatitis and liver transplant. On any list of the top docs world-wide she is up there with maybe two hands full of others. She is councilor-at-large for the AASLD and is a consultant for numerous other organizations. She has written countless articles in Hepatology magazine. She teaches other hepatologist around the world the latest in the field of hepatitis and liver transplant. She is leads many clinical trials. Etc. etc. And as I said, she is always there for me even if I am just need to cry about what is happening to me.  AND very importantly...she is one of the most caring and compassionate PERSONS I have ever met in my entire life! So when I read that someone's gastro doesn't have time for them I am dumbfounded *%#*& and more than a little ticked off? To me it is like "What, they are too busy to do their job?!?!?" I mean why are they a doctor if they don't have time for patients? Huh????

Anyway thanks so much for sharing your experience.
I'm I lucky? Absolutely! And very grateful.

Cheers!

Hector
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Avatar universal
That is crazy. My doctor gave me a list of side effects and the likelihood of experiencing them and this is what is says under cadiovascular:

Less likely category: flushing

Rare but serious category: Arrhythmia, myocardial infarction, hypotension, endocarditis, hypertension, chest paint, congestive heart failure

So for a doctor to completely dismiss chest pain (of all things!) concerns me a great deal.
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1746242 tn?1318209702
I agree with you if you don't like and trust your doctors find a new one. This treatment is hard to go thru and you need someone you can can trust. I love my doc.and my np's they are my biggest cheerleaders. Like you said would you take your car to a mechanic you don't like or is ripping you off. I wouldn't.
BoceprevirGal I hope you are in counceling. If you have tooth issues you need to have it treated. In my case I was in agony and couldn't wait for the root canal.
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Avatar universal
A few other factors that I feel have gotten in the way, with me advocating for my own health, is the fact that I had a drug problem early on in my life, so I didn't go to high school, or College, so I tend to feel quite intimidated by College educated people, which I'm sure many people can pick up on.
   Secondly, I have little or no support from my family, and have had struggles with domestic abuse, thru-out my life, which has alienated me, from recieving support from family and friends.
  These are not excuses, but I feel like I definitely have PTSD  trauma, just from having gone thru the addiction, the homelessness, being poor, at or below the poverty line, for the past 35 yrs of my life, and from spending time in Jail, etc-
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Avatar universal
Some insurance companies have these "1-800 nurse hotlines" and I can tell you if one called to talk about the chest pains they were experiencing, the conversation would immediately end with the nurse saying, "Hang up and call 911."
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Avatar universal
My exact thoughts upon reading one of the prior posts! You took the words right out of my mouth.....well, tapped em out on the keyboard. Thanks
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Avatar universal
I was told kind of suddenly, that my platelets were low, and my FibroSure test had me at stage 4. I then did a bx, which had me at stage 2, but I since my platelets had dropped, I was in a panic to start treatment.
   I think, because of the decline in our economy, not as many Doctors want to take my medical Insurance now,  I have a low paying job, etc.
  My PCP only gave me one refferal, to a Gastro, but he no longer was treating for Hepatitis, he said, because he no longer had a P.A. working for him. He told me to come back next year, for my first colonoscopy (I turn 50 yrs soon) and sent me on my way, with no other referral.
  I live in Oakland, and at that point, I was having terrible roving muscle cramps, joint pain and dislocations, and lower back ache, which got worse with driving. I  felt like it would be too hard to drive to S.F. I remembered a few people who had been cured, at the clinic I go to (OASIS) so I went there, because it was the only place in Oakland that I could find!
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Avatar universal
* I trust should be so I know!
I'm typing from my phone!
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Avatar universal
I think my liver doc, has been pretty "busy" during my treatment. But my gp has been up his *** looking out for me...which is relieving. I have not had anything too major I think to make me up and leave in the middle of tx. I also had a talk with him while I was in the hospital that I believe got his attention . I cannot speak for everyone else here...we all are very different people with different doctors, but I know I deep down have a fear of trying to find someone else and screwing something up for myself. I also am a really hopeful positive person. I trust that my doctor like anyone else is not perfect and there will be hiccups. We have had some questionable things happen, but he also has done some wonderful things as well.
well wishes,
Laura :)
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446474 tn?1446347682
I am curious. Maybe I am missing something...

Can anybody explain to me why they take their time and go to a doctor and pay for medical services (yes you are paying one way or another either money is being deducted from your salary at work or you paid into Social Security for years to get Medicare or Medicaid) when they don't trust the doc's opinion?

We are talking about your health which I would this would be a more high priority issue that you would want to get tight the first time. What if your doctor is misdiagnosing you as we have seen posted so many times here on the forum or treating you by their own not stand protocol?

Do you continue to take your car to the same repair shop even though they never fix it right or provide poor service?

What makes you think you can trust their opinion of hepatitis C when you don't trust them on other issues? Going to a doctor to get treated for hepatitis C could be at least a 24 or 48 week commitment and if not done properly can make you have do it all over again plus if you were treatment naive you no longer are, which could have consequences if you want to join a clinical trial for example?

I am serious about this question. I have read so many post of people not trusting or liking there docs yet they continue to go and deal with the ongoing conflict for as long as they choose to work with that doctor.

What I'm is missing? Anyone?
Thanks!

Hector
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Avatar universal
That's true in my family as well!
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Avatar universal
  I've noticed it's really hard to get some of the men I know, to go to the Doctor. Heck, look at me, I wont go to the dentist for my tooth pain, during tx, I just chew on the other side. We feel so crappy during tx, that we dont want to do anything extra, sometimes.(especially with the anemia)
   And to Joe's mom: good for you, to be looking out for your son!
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Avatar universal
I do agree he should be seen. We are not doctors...we are just here for support, advice and to share our own experiences. There was no way I was sitting at home with chest pain, and he shouldn't either.
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317787 tn?1473358451
You son could try baking soda and warm water, if he starts to burp you will at least feel somewhat better
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Avatar universal
The one woman I know who has chest pains from tx (besides IronPony, who also has them) also suffers from anemia, so like Laura (above ^) said, find out what his HGB is, on his labs. Have him get a copy of his labs, everytime they come out, I keep all of mine in a folder, and make an extra copy, so I have two copies.
   It could also be GIRD, and I have heard of people on this tx having a pain behind their breast bone, like a choking feeling, as if food was caught behind there, and I think that was in the side effects list.
   Of course, all Doctors will tell your son to have his heart checked out, if there is pain there, just to rule out endocarditis, and other heart problems, so try to convince him to go...even to the E.R .would be fine
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2061362 tn?1353279518
Don't like my Dr or his NP either. They treat me like I'm acting like a big baby. Try telling someone that is covered everywhere except face chest and upper back in rash, so severe on arms that couldn't even touch them that it's not the medication itself and to use lotion. Then the NP told me there was nothing they could give me for nausea. I finally insisted to the Dr. he give me something. Won't even go into the unsympathetic reaction to my sever anorexia. Have not even told them about my shortness of breath and chest tightness as of yet, will wait till I get labs done. Don't trust them at all so I go get my labs everytime I get a test done.
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446474 tn?1446347682
We are not doctors here.We don't know your son's medical history or other factors besides treatment. We don't even now his age. Is he overweight. Have high blood pressure.

Also a few facts:

* Any part of the chest can be the cause of the pain including the heart, lungs, esophagus, muscle, bone, and skin.

* Because of the complex nerve distribution in the body, chest pain may actually originate from another part of the body.

* The stomach or other organs in the belly (abdomen), for example, can cause chest pain.

Worried? I would be. Chest pain? Meaning what? What kind of pain? Pain in the chest has many many causes. Some serious some not. Treatment or not I would want to know what is going on as any pain in the chest is not good. Pain usually means "hello! Something is wrong!" If my son had chest pain I would take him to see a doctor ASAP. Yes, most likely it is nothing but just in case I personally wouldn't write it off as nothing without consulting a medical professional first.

From Emedicinehealth
http://www.emedicinehealth.com/chest_pain/page4_em.htm#When to Seek Medical Care

"When to Seek Medical Care
If you have any symptoms of chest pain, especially if the pain is new, call your doctor or 911."

"If your chest pain is not life-threatening, you should not feel embarrassed or that you "wasted everyone's time." Whatever the outcome, you always make the correct choice by going to the nearest hospital emergency department."

Better safe then sorry.

Hector
(Just one man's opinion).
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Avatar universal
No problem :) (Inc and all of the fat can really cause heartburn) so I would think this before anemia. If he's up to date with his labs the anemia can be very easily ruled out.
My doctor did not call me when I hit 8 but I knew...I just felt it.
what's up with these docs!!?
Well wishes,
Laura
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Avatar universal
Thanks so much for replying so fast.  I will have to find out the answers to those questions you asked.  We did speak to his doctor about it and he "matter-of-factly" told him that he didn't believe that chest pain was one of the systems of tx and to go get tests and he never mentioned that his shortness of breath could be anemia.  We are not at all happy with his doctor to say the least anyway.  He just doesn't seem to be all that supportive and because my son is at his mercy, we have to deal with it!  Anyway, he only has one more day of the Incivek left so maybe hopefully things might get a little better for him? Thanks again for your help!
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