I am very perplexed...would love input

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mer
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Date Joined Aug 2008
Total Posts : 613
   Posted 3/8/2009 8:33 PM (GMT -7)   
Hello, all!! My hubby, who has hepC and cirrhosis of the liverr, thankfully has been doing "okay" for the last couple of months. His liver numbers- AST, etc are all very good. A couple of weeks ago, I took him to the ER because we thought he was having a heart attack. The cardiologist on call saw something that prompted him to do a heart catheter and after that, said his heart was fine. Since then for the last couple of weeks, he is in severe pain in the chest and keeps getting told he has pleurisy, takes time to clear up, etc. Well, today I took him to the ER at the transplant hospital he is listed at and they did a CT scan and said that he has fluid in the sac surrounding the heart.....not enough that they immediately needed to admit him and do anything, but it's there and he still has the pluerisy. Cannot take steroid medications due to some adverse side effects (psychosis type) he has, etc. They said that the fluid in the sac around his heart is more than likely due to his liverr. He has never had ascites. Does that make any sense to any of you? His liver number are good, no history of ascites and now fluid around the heart!! Kind of has me un-nerved a bit. I am calling the transplant coordinator in the morning (they did not page the hepatologist from the ER tonight) and asking them what to do next, but am also wanted to get input from any of you out there as this is a new thing for us. What questions should I be asking, tests demanding for, etc?? Any input would be appreciated! Thank you!
 
Mer

itsme
Regular Member


Date Joined Mar 2007
Total Posts : 44
   Posted 3/9/2009 10:46 AM (GMT -7)   

Hi Mer,

I have Autoimmune Hep, with stage 4 chirosis. Last month I also had pleurisy.

It started with a trip to the ER cause I could not breathe, they diagnosed bronchitis gave me tons of meds (cause I am on immune suppresents) and did an xray. The Dr looked at the xray and said I was fine.  Two hours later he calls me on my cell phone and says the radiologist saw a "nodule" on my lung and to contact my primary Dr. and get a ct scan.

3 days later I went to my primary cause I thought I was having a heart attack. He checked me out and said it was pluerisy and that it is common to mistake it for a heart attack.

I had the Ct scan and it was ok.

He said the pain is known as the "devils grip" and it certainly was.  When the pain would start it was unbearable the only thing I could do was lay down and not move.

The only thing that helped was taking advil (which I am very limited to taking) and I tied a shirt around my chest as tight as I could which sort of held my lungs tighter (if that makes any sense at all) I read some where on the interenet that it would help.

The bottom line is I had it for a month, and it will eventually go away but it is horrible.

I would rather have a root canal with no novacaine than have pain from the pleurisy.

I did read on the Mayo clinic web site that it could be liver related/ autoimmune Hep.

related.

I hope some of this helps.

Rhonda

 

 

 


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/9/2009 11:02 AM (GMT -7)   
The medical term for fluid around the heart is pericardial effusion.  There are numerous causes, including reactions to certain medications and viral or bacterial infection.  The pericardial effusion and pleurisy are two separate things...unless one doctor thinks it's one thing and another doctor the other.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


1Shelly1
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Date Joined Oct 2007
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   Posted 3/9/2009 4:10 PM (GMT -7)   

Mer, I am hoping that this explanation of what's going on with your hubby will help you a little. Pleurisy is an inflammation of the pleural lining or pleual sac (which is like a clear sack with one side attached to the back of the lung and the other attached to the chest wall and the two surround the lungs. The pain is quite severe and is increased when the person affected breathes in. It is not uncommon to assume that the patient is having a heart attack and until x-rays , labs, an EKG, and a physical exam is completed by the Dr. there is no way to be certain.  So no matter what if someone has chest pain they should go to the E R. The lung itself doesn’t have any pain receptors but the lining of the lung is filled with them so the pain is usually quite intense.  When it is really inflamed it can cause shortness of breath and it may even hurt to push on the chest.  The usual causes are infection and/or viruses but other things that are less common can cause pleurisy.  Usually pleurisy is treated with antibiotics as the most common cause is infection. Splinting the chest seems to help a lot of people too. It reduces the pain but must be done carefully.

Pleurisy is different than a pleural effusion however. The lining of the lungs has a small amount of fluid that fills that space, in pleural effusion there is too much fluid and this can be life threatening. In this scenario it is usually caused by fluid accumulation secondary to ascites which causes  the fluid to seep thru teeny holes or perforations in the lining of the lungs. This causes the lungs not to be able to expand properly. Another cause is venous hypertension, also low protein or hypoproteinemia.

When there is way too much fluid then the Dr may perform what’s called a “THORACENTESIS” which is the procedure that drains the fluid.

Like the lungs the heart has a sac that surrounds it too. When the sac becomes inflamed the diagnosis is “PERICARDITIS”. There are several causes but it is usually treated with ibuprofen and/or antibiotics.  Fluid  can also enter that sac and like hep93 says it's called an pericardial effusion but ultimately is still a  pericarditis. If diagnosed early and treated early it normally resolves without any long term problems.

It seems like you went to the ER in a timely manner and also kudos for having further testing done. This was in your husband’s best interest because they found the pericarditis. If undiagnosed and the condition worsens this can be fatal so you did great!!!!!!!!!!!

As for questions that need to be asked, I would want to know if both are caused by infection? Virus? or what? Treatment? Plan of action? Follow up? Mild case or severe? Find out at what point they want you to bring him back to the ER, what should you be looking for as far as far as symptoms?  Of course if his breathing becomes worse or he has worsening shortness of breath DO NOT HESITATE-just get to the ER. THe most important thing I think is not to panic, if you panic he will panic which makes it worse. Keep us posted.


 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/9/2009 4:31 PM (GMT -7)   
Shelly, thanks for the detailed explanation.  :-)
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/9/2009 6:06 PM (GMT -7)   
Mer,

My goodness, I’m so sorry your husband is in the hospital. You did the right thing in taking him to the hospital where he is listed. I hope he’s been seen by the hepatologist by now and that you have more answers.

The fact that he has both pleurisy (also referred to as pleuritis) and pericardial effusion (water in the sac around the heart) indicates he may be suffering from pleuropericardititis which simply means he is suffering inflammation in the lining of both the lung and heart linings. Understand that any medical term ending in ‘itis' relates to swelling or inflammation. When these linings are inflamed, the body tends to produce fluid to try and reduce the friction as these organs expand and contract. This is where the effusion comes into play.

The pain is caused by the friction produced when the inflamed linings rub together. The friction is similar to rubbing two balloons together. It can be so painful, that a nerve block may be necessary to provide relief. This is a pain medicine injected into the nerve serving the intercostals (chest) muscles.

Since your husband has no history of ascites and there is only slight fluid increase around the heart, I am concerned about his kidney function. Pericardial effusion can be cause by kidney dysfunction. He has liver disease and is on diuretics, so kidney function is always a concern. Ask the nurse what his BUN is. If it is greater than 60mg/dL (22mmol/L) I would start asking questions. This is not well documented so they may not even be considering this.

You husband’s condition is very complex. When suffering from ESLD, we tend to get tunnel vision and forget that other medical issues can crop up that are unassociated with liver disease. However, they can often be a direct result. It’s a very frustrating thing to deal with. Pleurisy is usually treated with steroids and since he cannot take them, you may be in for a very long road in getting over this.

The volume of fluid around his heart needs to be monitored. I don’t mean to scare you, but you need to ensure the docs are vigilant. If too much fluid builds, the heart will have a difficult time pumping which can be life threatening (cardiac tamponade). The normal amount is 15-50 mL. Also, pleurisy is one step away from pneumonia. Shallow breathing contributes to pneumonia. I would caution you against wrapping his chest. He should hold a pillow tight to his chest when he is in pain. At least 3 times a day, he should be encouraged to take several deep breaths and cough. This will help stave off the pneumonia.

I wish you all the best. I hope you have some good news for us very soon. I will be praying for your both.

Love

Penny

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 3/9/2009 7:42 PM (GMT -7)   
Thank you all for the input. I tossed and turned all night last night, afraid to go to work this morning because of the issues. He did have some arrythmia show on ekg yesterday....however, they sent him home last night!! I did talk w/ the transplant coordinator this morning, and he sees the hepatologist Thursday in the clinic. I have also left two messages today with the pulmonary doc that is on the team hoping I can get my hubby in to see him while we are down there on Thursday. Thursday will be a combination so far of seeing the hepatologist, having labs drawn, and going to the pulmonary lab for them to draw ABG and hopefully see the pulmonary doc. This, in my opinion, has been going on too long for it to be viral. I asked them specifically in the ER last night if this could be bacterial. They said it would have shown in the bloodwork. However, I do know that Thursday they will do CBC to check for any signs of infection, etc. So, in a holding pattern here.

Shelly, Penny and Connie, your input is very valuable, and I appreciate it so much. What you said about the fluid leaking into the lining makes more sense that what they told me yesterday. I was a bit confused. I will definitely stay on top of the doctors on this one....this is not something to mess around with.

Thank you!

We saw a kidney specialist a few weeks back and so far, so good on the kidney function.

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/9/2009 7:53 PM (GMT -7)   
Hang in there Mer. Keep an eye on him and trust your gut. Don't hesitate to take him back to the hospital if need be. We're all behind you.

Take care. Breathe.

Penny

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 3/14/2009 8:06 PM (GMT -7)   

We went to the appointment this last Thursday with the hepatologist, and then a whole chain reaction of events occurred. The day before the appt, our 4 year old tested positive for strep throat. So, the morning we went to the hepatologist office, my hubby woke up just not feeling well. In the doc's office, we told the doc about our son having strep, etc and they prescribed a z-pac for my husband as a precautionary measure. So, we get home, and I get him settled in and went to the pharmacy. While there, I got a phone call from our transplant coordinator stating that my husband's while blood cells are very very low and that they have paged a hemotology/oncology doc to call us and to be expecting the call and in the meantime keep checking his temperature, and if he runs a fever over 100 to call immediately. When I got home and checked his temp, it was 101.2!!!! So, called them back and also called the hemotology doc's office and the nurse pulled up the bloodwork and said his neutrophils were only 20 and for me to get him to the ER and have them paged when we got there. So, rush him down to the ER and they have admitted him. He is neutropenic, in that his white count and neutrophils have dropped even lower. He basically at this point has no immune system and has an infection. They have been running a lot of cultures, etc to determine the source, but yeterday did do a bone marrow biopsy. This is all very unnerving in that we were just there for a routine visit with his hepatologist!! Now, he is in isolation, etc at the hospital. Guess mainly I just needed to get all this off my chest. This whole thing is such a roller coaster ride. What I have found through all this process with the liver disease is that literally anything can happen....any part of the body's systems can be affected. Any words of wisdom at this point would be helpful......has anyone ever experienced the neutropenia???

 

Mer


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/14/2009 9:02 PM (GMT -7)   

Mer, never a dull moment, huh?  These are the types of things that make dealing with the disease so stressful.  I experienced leukopenia when I was on interferon for my hep C--white count so low that I was pulled off treatment.  This happened twice.  I wasn't told if my neutrophils were low.  I hope the cause of your husband's low immune system will be found and that they can get any infection under control.  I hope your son will also be well soon.

Absolutely trust your gut when something doesn't seem right to you.  And don't forget to take care of yourself, too.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 3/15/2009 5:45 AM (GMT -7)   
(((Mer))),  Wow just to be a routine office visit and end up like it did.......I personally think that God was keeping your husband under close eye.......Hang in there......Lot's of thoughts and prayers........

Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/16/2009 2:26 AM (GMT -7)   

 

Mer,

 

It sounds like the doctors are aggressively trying to determine the source of your husband’s infection.  This is very important to his course of treatment.  Early diagnosis is critical in successfully ridding his body of infection.  If he develops sepsis, it may be very difficult to resolve.  I pray this is not the case. 

 

Pace yourself, you may be in for a long road.  I hope you have family available to help you through this.  You’re in my thoughts and prayers.  May God bless you and keep you. 

 

Penny

 


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 3/16/2009 9:16 AM (GMT -7)   
Dear Mer,

I've learned so much from this thread. My friend's children are grown (18 and 27) and I can't imagine going through all of this with a 4 year old too! From your posts I knew you were pretty strong and I think amazing is another way I'd describe you.

Take care,

Joan
Best friend is in ESLD, has HepC and cirrhosis. 


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 3/17/2009 7:15 PM (GMT -7)   
Thank you all! I left the hospital today VERY frustrated! Hubby has had a severe headache since all this started last Thursday, and no medication is helping. So, they are going to try some migraine medication and also do an MRI. In the meantime, the hepatologist came in (not our regular one, but the one making rounds) and they are trying to point the finger as to why his white count dropped so significantly to a medication he was on. I told the doctor that he has not been taking that medication, and he walked out, pulled the med list out of the chart and asked me why it was in the chart. I told him that it was listed in the chart because no one is listening to me, and when we were admitted through the ER, they pulled up some old records and listed it along with the meds he is currently on. I explained to him that I tried to tell them in the ER he was not on that medication, as I have also told the Internal Medicine doc in the hospital. Then, I explained to the doc that because of his hepC, hubby has had some autoimmune issues with vasculitis and could this be an autoimmune issue? He siad the only way to tell is to discontinue the neupogen shots (to get his body to make more white cells) to see if he levels off or drops again. Then, walked out of the room!! So, when I got home, I pulled out all his meds, found the one in particular that they were talking about, and counted the pills. He was only given 15 pills, 3 months ago, and there were still 9 pills in the bottle......he has not taken this medicine in quite some time!! So, I called the nurses station, and told his nurse this and told her I wanted a note in the chart for the doctor to see!! Sorry to be so "chatty", but guess I just needed to get some stuff off my chest!!! Doctors make me so frustrated sometimes!!!!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/17/2009 9:55 PM (GMT -7)   
Mer don't even worry about venting, that's what we are here for.
It's your husband's life at stake and you are in the trenches with him, fighting the battles. You give them a WHAT FOR anytime that they aren't doing their jobs properly. Way too many patients are losing the battle because of mistakes being made.

Thoughts and prayers........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 3/18/2009 3:23 AM (GMT -7)   
Mer

I agree vent all you want. Working with multiple doctors can be so frustrating especially when they don't seem to hear you. Remember you know your husband better than anyone and have first hand experience with his disease, keep making noise.

Stay strong

Lucy

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/19/2009 6:24 PM (GMT -7)   

Mer,

 

The transplant team just ordered Neupogen shots for Harvey because his white blood count is low.  They want him to resume wearing his mask and avoid crowds.  They made several other changes to his meds.  So far, he has no signs of fever so I’m trying not to panic.

 

I hope thing are improving for you.  I’ve been very concerned about you husband’s condition and I’m praying things turn around for you.  Let us know how things are going.

 

Penny


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 3/19/2009 8:05 PM (GMT -7)   
Hello, all! The neupogen shots seemed for a day or so to have done the trick....however, yesterday his white count started dropping again. They will re-check counts tomorrow and if it's still dropping, the hemotology/oncology doc will have to make some decisions on where we go from here. In the meantime, he still is fighting pneumonia. His poor body is just having a really hard time bouncing back from this one.

On another note, I thought I was doing a pretty good job holding it together, going to work, then to hospital, etc....tonight as I was leaving the hospital, my car decided it would not start and has left me stranded at the hospital!! I called my sister in law and she came and got me and took me home. I left the car in the parking garage, and decided I just could not deal with it today!!!

Penny, one thing they did tell me about the neupogen shots is that sometimes, it can cause bone pain....one of the lovely side effects. So, be on the lookout. I pray that Harvey does not get fever and that the neupogen shots wll bring his counts up quickly!!

will update later. Thank all of you for your support!

Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/19/2009 8:30 PM (GMT -7)   

Mer, I'm sorry your husband is having such a rough time.  You did the right thing in leaving your car at the hospital.  Sometimes just one more thing can send us over the edge.  I hope you are getting some good sleep tonight.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/22/2009 2:33 PM (GMT -7)   

 

Hey Mer,

 

How's your husband doing?  I hope he is improving.  Look forward to hearing from you.

 

Thanks,

 

Penny


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 3/22/2009 7:12 PM (GMT -7)   

Penny....thank you for asking. He was disharged home from the hospital today. He still is dealing with a severe headache, but his white count has stabled off. We have been told he will need to have it checked pretty regularly, though. We have been told that the cause of all this was medications......anything in the NSAID group (non steroidal anti-inflammatory medications) and that includes over the counter stuff. Very rare side effect, and they said that the fact he has liver disease just did not help the situation. This last week and a half has been very crazy!! We will follow with the liver specialist in a week or so and go from there......so no more anti inflammatory medicine for him! nono How is Harvey doing?? Have the neupogen shots helped? Any side effects?

 

Talk to you soon!


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/23/2009 3:23 AM (GMT -7)   

Mer,

 

I’m so glad to hear he is out of the hospital.  I’m glad his white blood cell counts have improved.  I imagine you are a wreck.  I’ve been very concerned about you.  Did they get the pneumonia under control?

 

So far, Harvey is fine.  No fever or signs of any infection.  I essentially have him quarantined.  None of the local pharmacies had the Neupogen shots.  The transplant team finally ran some down at a Walgreens about 20 miles away.  He got his first shot Friday and was instructed to have a shot once a week.  No side effects thus far.

 

I gotta go to work.  I’ll check back with you later.

 

Penny

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