HealingWell
Search Close Search
☰

Pericarditis - A Story About Me and My Ex Pericardium

Support Forums
>
Heart & Cardiovascular Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/21/2011 12:15 AM (GMT 0)
Before I begin my story, thanks to all who contribute to this thread. Your stories, experiences and suggestions have brought me great comfort and confidence in seeking resolution of my own problem. It is wonderful that we have a forum for what is a relatively esoteric condition

Part 1 - Who is little_cowboy?

I'm a 70 year old retired professional accountant. My wife of 46 years, a retired emergency room nurse, and I live on our cattle ranch near a small town in Northern California. Our lifestyle is active both in terms of the physical work that we do on the ranch and our social/community involvement with a number of non-profit organizations in our town. We have two children who also live in Northern California, but about 5 hours away.

On December 23, 2010, I left my family doctor's office, after completing my annual physical exam, feeling on top of the world. All of my chronic health issues: type 2 diabetes, high blood pressure and high blood lipids were under great control. Blood work, EKG and everything else great. I remember literally trotting up to the mail box when I got home and saying to myself "I really feel great!"

One week later a chronic dry cough that I chalked up to seasonal asthma persisted in addition to an emerging urinary tract infection that was treated with Cipro by my family doc on Dec 30. I was also feeling a sense of blocking in my head and neck accompanied by shortness of breath, so, concerned about possible cardiac implications, he referred me to a local cardiology group. In the mean time, I was putting weight at an alarming rate... 10 lbs in 5 days as well as developing some edema in my lower extremities. The diagnostic cardiologist was concerned enough to skip the usual treadmill stress test and schedule me for an angiogram on January 13. At that time he found that my heart appeared to be sound with no significant artery issues but found elevated pressure in the atria and ventricles. An echocardiogram was also performed while I was in recovery from the angiogram. The findings from that were inconclusive because my having to remain flat on my back limited the possible views of the heart. I went home from the hospital with even more shortness of breath and blocking sensation.

Two days later on Saturday, Jan 15, I ended up having a 7 hour visit to the ER with acute breathing problems. There was fluid everywhere including pericardial and pleural effusions. They put me on IV Lasix during the visit and performed chest xrays and a proper echocardiogram with contrast, which confirmed the existence of the effusions. After boiling out about 3.5 liters of fluid and giving be a breathing treatment, I was discharged and told to follow up with my family doc asap.

I saw him on Monday the 17th and had a very comprehensive echocardiogram the following day at the cardiologist's office. The baton was passed to cardiology at that time. The pericardial effusion subsided somewhat from the Saturday ER visit to the Tuesday cardiology visit. So started 5 more months of "sorting out the problem".

To be continued,

little_cowboy
Posted 8/21/2011 8:01 PM (GMT 0)
Hey there lil cowboy,

First of all I like you and your wife already - she is my kind of gal - a nurse and an emergency room nurse at that.  "Big Smile" !

I was really getting into your story so I will be awaiting the next chapeter...

Kindly,

Kitt

Posted 8/22/2011 5:18 AM (GMT 0)
Part 2 - Sorting Out the Problem

So it's the end of January 2011 and I've been seen by Dr C. Ray Jones, my family doc, and Dr. David Ploss my local Cardiologist. Several things became apparent.

First I could not continue to carry the weight (261#) that I had ballooned to in early January. I could tell the difference (increased shortness of breath) of even a few pounds when I would pick something up and walk even a short way with it. Dr Ploss started me on a low dose of Lasix to combat water retention and Colchicine to combat inflammation of the pericardium and with the approval of both doctors I rejoined Weigh Watchers and began to track and control my food consumption every day following the guidelines of the plan. By the time of my 70th birthday at the end of March, I was down to 228#, a loss of 33 lbs.

Second, I needed to log everything that happened. As a business manager, I had always followed the doctrine of "If you can't measure it, you can't measure it". Because of the complexity of this problem, it was really critical in this case to do so. I created a log in table form where I charted blood sugar, blood pressure, pulse, weight, urine output, medical appointments, lab tests, radiology appointments, changes in medication and the degree of the following symptoms that I was experiencing on any given day.

I encountered the following symptoms up to the point of surgery on August 10:

1. Chronic cough often accompanied by a pleural "rub", a sensation that your breath was percolating through water in your lungs. You can actually feel the bubbling sensation. In reality, the walls of the pleural sack are rubbing together and the fluid caught between those walls is shifting around. The same thing can happen inside the walls of your pericardium. I probably had some of each going on. Thank God for cough drops and Vick's Salve. I seemed to get some relief from the menthol/eucalyptus content in them. All of this caused by inflammation, the origins of which are still unknown (virus?).

2. Inability to sleep lying down flat. I could barely breathe whenever I tried. My recliner and I became very good friends and I found that I could partially recline and breathe OK. I was even able to sleep sitting straight up on really bad nights.

3. A blocking sensation whenever I exerted myself, even just to stand up. I felt like someone had hooked me up to an air compressor and flipped the switch. Acute shortness of breath always accompanied this symptom. If I bent over to pick something up, I though my head was going to explode. The blocking would get worse with fluid build up in my body.

4. Persistent edema in my lower extremities. I thought I had someone else's feet and ankles. Some of this was the result of various meds that were tried along the way. It would persist for weeks and then go away for a stretch, then come back etc.

5. Persistent ascites. I had pockets of fluid everywhere but the winner was my abdomen. I honestly felt like someone had inflated a beach ball inside my belly. It was big and taut and really gross. The pressure of that bulk did not help my breathing either. The ascites materialized shortly after my weight bottomed out at the end of March and resulted in gaining back 8 lbs of the weight that I had previously lost. I continued to lose weight in other parts of my body but my belly kept growing. I had to hang up my Levi's in favor of coveralls because it was impossible to keep my pants up. So where does all this fluid come from? When the heart is in failure for whatever reason and is being overworked it needs more than its usual water requirement which it then releases back into the body. That water will take the path of least resistance and ends up in your feet and ankles (the bottom of the body right?) and in the tissues of the abdomen. I think I have that right. Someone please correct me if I don't.

6. A visible pulsing in my carotid arteries resulting from the elevates pressures in the upper chambers of my heart.

7. Extended periods of loose stool and too frequent bowel movements. This was ultimately tied to the Colchicine and went away when anti-inflammatory therapy was discontinued.

8. I felt very discouraged and that the active life that I had known was no longer possible.

Getting back to the 5 month sorting out period.

I saw Dr Ploss on a regular basis, had more ECGs and other tests and in March he referred me to Dr Elyse Foster, Cardiology Faculty Practice at UCSF. It was clear that I was suffering from pericarditis at that point, but because of the seemingly sudden onset in January, it might still be a case of inflammation of the pericardium and lungs and not thickening, scarring and stiffening. We tried a course of anti-inflammatories, but it was clear after a few months that a high resolution look at the pericardium was indicated. We returned to UCSF in early June and a gated MRI was performed. The pericardium was indeed thickened and scarred and I was referred to Dr Scott Merrick, Chief of Cardiothoracic Surgery at UCSF. Dr Merrick met with us and told us that my pericardium was three times normal thickness, was badly scarred and needed to come out... all of it. He said if we wanted to put it off until early fall, we could. Both my wife and I felt my health was deteriorating at an alarming rate and that the sooner we got to it, the better which turned out to be August 10.

One more tip before I finish up this section. In addtion to charting your condition on a daily basis, be sure to get copies of all of your lab and radiology reports and file them in date order in a binder that you have with you for all your appointments. The hospital or testing facility will provide them to you if you ask. This is a condition that will probably take you to different medical providers and places. The best way to make sure that the new provider has all of your stuff is to have it yourself and allow them to make copies if need be.

In summary, the sorting out period had lots of ups and downs, ever changing mix of symptoms and a never ending wish that it would just all go away as mysteriously as it came.

Well, that's about all I can squeeze out tonight. Will pick up again tomorrow.

little_cowboy
Posted 8/29/2011 2:33 PM (GMT 0)

Sorry for the lapse in posting, but the story continues:

Part 3 - Getting ready for surgery. 

The weeks before surgery were filled with anguish.  I was scared.  My condition was deteriorating.  Shorter of breath, dizzy and wobbly on exertion.  All of the symptoms increasing in magnitude.

It finally dawned on me that we had done everything we could to get ready for this and that I just needed to let go and let the UCSF Team do their stuff.

I also checked in with Dr Jones because the ascites had gone nuclear and I looked like I was 8 months pregnant.  We were concerned that the extent of the ascites was severe enough that there might be something else evil going on in my abdomen.  A very comprehensive abdominal scan was done at our local hospital and, fortunately, the results showed that nothing was out of whack other than pockets of ascites everywhere.  We had feared a possible tumor or problem with one of the organs down that way.

And so we made final plans for the trip south to San Francisco including finding accommodations for my wife somewhere within reasonable distance of UCSF Hospital.  Everything really close to the hospital had been booked up for months and San Francisco is not real user-friendly when it comes to parking.  My wife had grown up in that part of San Francisco and so we settled on a nice motel in Daly City, just south of SF.  No parking hassles, reasonably safe at night and only 20 minutes away from the hospital.

We drove down the night before and stayed at the Daly City motel so that it would be easy to get me to the hospital on time in the morning.

We were both relieved that it was finally time for the big show.

lc

Posted 8/29/2011 5:55 PM (GMT 0)

Part 4 - Surgery Day

We checked in at UCSF at 10AM on August 10.  UCSF, like most teaching hospitals, is a very big and busy but efficiently run place.  The surgery that was happening brfore mine in my OR had run overtime so we spent three hours in the surgical waiting room area.  There were recliners available for the patients and seating for guests.  My wife and children were there to keep me company.  We had a great visit, played games on my son's IPad and I even got in a few pre-surgery short naps.

At 1 PM, they finally came to take me to the prep area.  By 1:30 I was ready to roll.  I said goodbye to my wife and kids and said my final prayers.  The anesthesiologist pushed the plunger on the Versed Cocktail and that's the last thing I remember until coming to in the Cardiac ICU around 8PM.

From what I've been told, the anesthesiologist had me for about an hour in the OR getting me ready to his satisfaction, the actual surgery took around 4 hours, and there was another hour in the OR so that they could remove the breathing tubes and do some other finishing touches.  Fortunately, they were able to perform the pericardectomy without having to put me on heart bypass so that sped up the surgery a bit and also avoided the need for any blood transfusions

I was awake and talking around 7:30 (I don't remember that) and my first memory was talking to my wife in the ICU at 8PM.  I remember she and the kids saying that my color was great and my saying that I felt like I had been run over by a truck.  I spent the night and most of the next day (Day 1 Post-Op) in the ICU and was finally moved to a Cardiac Recovery room around 6PM on August 11.

lc

Posted 8/29/2011 8:10 PM (GMT 0)

Part 5 - Post-Op

Day 1

Now that I was in a room, I was still wired up with all sorts of tubes and sensors: wireless monitor electrodes, nasal oxygen cannula, urinary catheter and reservoir, 4 chest tubes (installed during surgery) with reservoirs and IV drip lines. Breathing was difficult and painful and continued to be (but diminishing a little) for the rest of my hospital stay. In addition to the surgical trauma inside and on the surface of my chest, the discomfort and pressure caused by the presence of the 4 chest tubes and the upward pressure of my distended ascites belly was the worst part of the whole experience. Coughing was very painful but necessary in order to bring up some pretty nasty looking gunk that was in my lungs. I was trained to hold a pillow to my chest whenever I had to cough or whenever I was moved in bed. Lying flat in bed was impossible but all those months in the recliner at home had gotten me used to sleeping in a sitting position in bed. Pain meds and insulin were administered IV.  I was given various breathing treatments by inhalation therapists and was instructed to exercise my lungs using a sprirometer as often as I could.  I was started on a clear liquid diet that evening.

Days 2,3 & 4

Difficult days.  I needed assistance in order to get in or out of bed, reposition myself, or to sit in a chair in the room for my meals.  There was a lot of activity every hour of the night and day.  Vital sign measurements, breathing treatments, hourly blood sugar tests, chest and abdomen xrays, medications to take, visits from doctors, body cleanup etc and I generally would get only an hour of sleep at a time.  I loved the sleep because it was the only escape from the pain and discomfort I was feeling.  I took my first walks and it took a village to make that happen because of all of the stuff I was hooked up to.  I used a walker and had one person at my side dragging along an IV cart. Another person would drag along an oxygen canister on wheels.  The various drainage reservoirs were hung on either the walker or the IV cart.  But it worked and got me on my feet a few times each day.  They pulled my catheter on Day 2 but had to insert a new one on Day 3 because my bladder was backing up.  The two chest tubes that were draining the areas near my heart were pulled on Day 3 which helped ease the discomfort a little.  I began having solid food on Day 2 but was switched back to clear liquids when my waste elimination systems went on strike.

There were complications brewing starting on Day 3.  Blood tests showed that my kidneys were not happy.  My blood pressure was too low as well. My wonderful wife, the nurse, was very concerned about this and spent several nights sleeping in my room in a sort of recliner that had been made available for the purpose.  But all that improved when they backed off on getting some of the fluid out of me.  Your body systems require a certain amount of water in order to function normally and I was just a bit on the dry side.

By the end of Day 4 I was spending more time out of bed in my chair which made subsequent walks and other mobilization easier.  I still needed help getting in and out of bed and getting positioned properly when in bed.

Day 5

Things were looking up.  The third chest tube was pulled, leaving only one and its reservoir. Another attempt had been made to lose the catheter but I was still sporting my 3rd until mid day on Day 5. I managed to eliminate some solid waste and was back on solid food (which was very good by the way).  I was able to sit up and get to my chair by myself and was able to walk by myself with assistance in getting my two reservoirs hung on the walker.  I was able to get out of my chair to brush my teeth, shave, wash up and go to the bathroom on my own.  I think I went for 8 walks on Day 5 and that evening.  My breathing had improved and I was still getting various breathing treatments every 6 hours night and day.  I didn't have to cough as much which lessened the number of those painful moments and when I did cough, there was not much gunk to cough up.

Day 6

Getting better.  They pulled the final chest tube and I could go for walks without anything attached to me.  I worked with the physical therapist and switched to a cane for walking instead of the walker.  I walked as much as I could that day, increasing the distance with each walk.  I could get out of bed easily on my own but still needed occasional help getting back in.  I tried to spend as little time as possible in bed.  My wife brought me a laptop computer and I was able to catch up on communications with friends around the country and back home.  It was pretty neat to be able to do a video chats from my room.  it was time to start thinking about going home.

Day 7

We met with a diabetes specialist.  Starting with the morning of surgery, my regular diabetes pills (3 different drugs) were discontinued in favor of using insulin.  It's not that the pills didn't work, they felt it best to give my liver and kidneys a break for 5 or 6 weeks.  They gave me insulin while I was in the hospital and I was to continue using it until Dr Jones, my family physician, felt that it was OK to go back to the pills.  So starting that day, I had to increase my blood sugar testing to before each meal and just before bed time.  There are two different types of insulin that I have to inject.  The number of units that I take is dependent on what my blood sugar is as compared to a reference chart that has doses for various ranges of blood sugar.

After having a final chest xray, getting the final go ahead from Dr Merrick, and a final breathing treatment, they "kicked me to the curb" (my wife the nurse calls being discarged that) and we were on the road headed home by 12:30.  Since I'm not supposed to drive for at least a month, my wife was at the wheel.  A precaution that was emphatically recommended by UCSF was that I should sit in the back seat with a pillow on my chest.  It would not be good to get hammered by a deployed air bag and our front passenger side air bag can't be disabled.  We removed the front seat head rest so I could see what was happening ahead.  It was a beautiful day and traffic was light.  We arrived home at 7:30 PM making stops only for lunch and hourly stretch breaks.  7 hours on the road was a bit much but I'm glad we did it all in one shot and could be back home where I was all set up to be as comfortable as possible.  I did my bedtime blood test/insulin routine and was out cold in my recliner by 8 PM.

And so my new life began.

lc 

Posted 8/31/2011 4:21 AM (GMT 0)

Update - August 30, 2011

Today was 20th day since surgery and my 14th day out of the hospital at home. I feel great and am feeling better and better with each new day.

I've continued keeping a log of all my daily vital signs, weight, urine output, blood sugar readings, insulin taken, miles walked and other exercise, extent of remaining symptoms, changes in medications and notes about medical appointments. I still think that doing this helps you manage your case. I am amazed at how quickly I forget or get fuzzy about what happens along the way if I don't write it down.

My energy level and general interest in the facets of my life have returned to normal, so much so that I'm having trouble sleeping for a full night because there is so much I want to do.

Breathing gets easier and less painful each day. I took my last pain pill 10 days ago and have switched to ibuprofen to take the edge off and to chip away at any inflammation that might still be lurking. I still have some pleural rub happening when I breathe deeply. I still do breathing exercises on my spirometer.

With improved breathing and lessening pressure on my chest, I'm no longer sleeping in my recliner and can be almost completely horizontal in bed. I'm pretty wide awake at 4 or 5 AM in the morning after going to bed around 10 the previous night.

I've been walking or marching in place as much as I can stand and can walk about a mile and a half at one time. The walking is extremely important for all kinds of reasons besides exercising your heart and lungs. As a result of being so sedentary in the months before surgery, I lost a lot of strength in my legs and my balance was compromised as well. I can walk at a pretty good clip now and haven't had to use a cane for the last week or so. The more confident I feel on my feet, the more I want to walk and be active. I have to work hard to keep from taking on physical activity that I shouldn't be doing like lifting, pushing, pulling and over reaching.

When I left the hospital, I still had a severely distended ascites belly. Now that my heart is operating without overworking, it's no longer pumping new excess fluids into my body systems. The Lasix is doing its job and slowly bleeding off the existing pockets of fluid. I've lost 11 pounds since coming home and am down to 217 lbs as compared with 261 lbs at the moment of maximum bloat last January. That last 11 lbs represents about 5 quarts of fluid. Can you imagine a gallon jug of wine plus another quart in your abdomen? I'm able to keep my pants up again and wore Levi's for the first time in many months today... now that's progress I can believe in.

We're able to stick to our food plan and I'm getting to do some cooking again which is one of the joys of my life.

So there you have it. I've probably rambled to excess but I hope that this saga will be useful to those who are facing their own battles with pericarditis.

Will post updates as I move forward in this journey. God bless you all.

little cowboy

Posted 9/12/2011 1:17 AM (GMT 0)
Update - 31 Days Post-Op:

Have seen all three of my physicians in the last two weeks for followup eval.

The surgeon was very pleased with my progress and said I was all done at UCSF, the baton officially passes to the local docs.

My local cardiologist also happy with the results.  I have a followup echocardiogram at his office this coming week and then won't need to see him until November.

My primary care doc also happy with the results.  Partially switched me back to pills for my diabetes.

I feel great and have returned to most normal activities, including driving except those that might compromise the healing of my sternum (heavy lifting, pushing, pulling).

It's great to be walking again.  This afternoon we did just under 4 miles.

I've lost another 9 lbs (that's a little over 1 gallon) of ascites fluid and that's after cutting my Lasix dose 25%.

Bottom line, the recovery is going great and I really do feel like a brand new me.

Take care,

Little Cowboy

Posted 9/12/2011 2:01 PM (GMT 0)

Little Cowboy

 

Congratulations - 31 days post-op and all is going well.  I am so thrilled for you and sharing your story here is so appreciated by our members and our guests who come here to read. 

It is good to read how you followed your Drs. guidelines and how patient you have been as you keep putting one step in front of the other.  The miles you are putting on is very impressive. :-)

I cannot tell you how much I admire you.....................keep it up my friend.

Kindly,

Kitt

Posted 9/12/2011 3:41 PM (GMT 0)
Kitt,

Thank you for your encouragement and guidance in putting this story together. I hope that if any of the forum members have questions, they'll ask.

I have been blessed by having access to outstanding medical care, having a loving wife who has been my partner every step of the way through this process and by having the love and support of family and friends. I'm a very lucky guy.

See you down the trail.

lc
Posted 11/3/2011 1:43 AM (GMT 0)
Almost 3 Month Update:

Hi again.  Happy to report that I'm doing great and really feel like I have my life back.  Here are some things that I've learned up to this point in my post-op recovery period.

1. Listen to your body.  It's been through a lot.  Don't overdo physical activity, especially anything that could compromise the healing of your sternum. 

2. Keep walking, it does wonders and keeps you from lapsing back into the sedentary life that was forced upon you when you were sick and in cardiac failure. But when your body says "that's enough for today", it's enough.

3. Continue to keep a daily journal of changes in your medications and the vital signs related to your major health issues (weight, diabetes, high blood pressure, etc) so that you can show your doctors how you're really doing when you have followup visits.   Remember, "if you can't measure it, you can't manage it."

4. Be patient, even though you are pretty much back in the game a couple of months after surgery, your body is still adjusting to changes resulting from the pericardectomy and will continue to do so for some time.

5.  Have fun.  Bring joy to others.  You've been given the gift of life.  Be nice.

Will check in down the trail.

Blessings,

little cowboy

Posted 11/3/2011 4:18 PM (GMT 0)
Welcome aboard! Glad that this is helpful to you.

For you and other viewers of this thread, please note the following corrections to my previous posts above:

8/20/11-Part 1, Paragraph 4: "echocardiogram with contrast" should be "chest CT with contrast"

8/22/11-Part 2, Paragraph 3: "If you can't measure it, you can't measure it." should be "If you can't measure it, you can't manage it."

I'll continue to post as I learn more.

little cowboy
Posted 2/4/2012 7:31 PM (GMT 0)
Greetings to all.  Coming up on the 6 month anniversary of surgery and I'm happy to report that I feel totally "normal" and healthy.  The surgery wounds have completely healed, I have absolutely no symptoms of the Congestive Heart Failure that was caused by the Pericarditis and I have resumed all of the physical work and play that I so greatly enjoy.

One lingering post op problem has been very recently fixed.  While I was in the hospital, they started me on Flomax, which I continued to take after that.  Over the past six months, however, I've been experiencing problems with my balance.  about a month ago I started physical therapy to strengthen my legs, feet and ankles which had lost much of their mojo during the year of inactivity prior to surgery.  That helped but did not solve the problem.  In a visit to my Urologist, he suggested that we discontinue the Flomax because some patients report dizziness from it.  I was having some dizziness, but it was more like vertigo, which has also been reported by some patients.  So I stopped the Flomax and my balance has returned.

As my primary physician put it, "Your body doesn't know why you take the medicine", and indeed the medicine does what it wants to do. 

I spent a lot of time worrying about other potential brain problems, when all along my problem was side effects from a medication.  As our polypharmacy mix grows with age and new conditions, so does the chance of such side effects.  Luckily, I have been able to eliminate the offending medication without any return of the underlying medical problem for which it was taken.

God bless.  Be nice.

Little Cowboy

Posted 4/9/2014 3:54 PM (GMT 0)
Hey Little Cowboy,

Thanks so much for your story and sharing your journey with us. I too have been recently diagnosed with pericarditis with effusion and the doctor has ruled out any kind of MS, RA, Lupus or any other autoimmune diseases thus far. My systemic inflammation has come from the foods that I have been eating, which totally shocked me since I have been eating clean, healthy organic food for the last two years. My gastro doctor had me take a test called MRT test, which measures by blood sample, what foods that I have intolerances to that can trigger inflammation. Come to find out that there were over 30 foods, and additives including some medicines that were causing my inflammation! Foods like spinach, broccoli, cucumbers and others that I have been eating all my life. So my doctors are trying a different approach to my pericarditis by bringing down my inflammation through what I eat, rest and light exercise. My cardio doc had done a cardiac ablation 3 years ago for arrhythmia and that's when the inflammation started, although he won't admit to that procedure being a possible cause, I think it was the open door to a cascade of systemic inflammation. Either way, your journey has given me hope just in case the treatment I'm choosing now doesn't work. Thanks for letting all of us read your story. Have a long and blessed life!
MsAnnie
Posted 4/12/2014 5:52 PM (GMT 0)
little_cowboy

You must be close 3 years out from your surgery and as you can see, members are still reading your story.

Let us here from you as I would love and update.  Perhaps you posted one and I missed it - I have a touch of chemo-fog.

Hugs to you my favorite cowboy!

Kitt

✚ New Topic ✚ Reply