Constrictive Pericarditis

[ArchieX]

Hey all.
I was diagnosed in May 2001 with Hodgkins disease after presenting with a lump on my neck along with dramatic weightloss. I also had lumps in the chest area which showed up on scans. I was given several causes of different typs of chemotherapy over the next 18 months. Some i could cope with but 2 had to be stopped due to adverse reactions.
The chemo didn't take care of anything and the lumps in the chest remained. My consultant decided on a course of radiotherapy everyday for 4 weeks specifically to the chest area.
Anyway, after this everything was going okay for about a year. Ct scans showed that the various tumours in the chest were shrinking and no others had appeared anywhere else. However, almost over night another lump far larger than the first appeared on the other side of my neck. My Consultant then decided to go with a Bone Marrow Transplant for which my sister was the donor as this was in his opinion the best option.
Was in hospital for 5 weeks and the BMT went okay. However, within 2 months it became obvious that i had developed chronic Graft-V-host disease. (Arms and legs were swollen, red and extremely itchy. The skin was broken etc. this along with problems with the eyes and throat, made things tough).
Fast forward to last christmas and i was now on an average of 30 tablets a day. Just to keep the G-V-H under control. Even then it still flares up every now and then!
Since the the BMT i have found myself getting out of breath very easily and my chest can feel like i have been smacked in the sternum with a mallet. I find walking can be difficult as i get out of breath easily and the feet can begin to hurt if i go too far.
Anyway, to get to my point, i was always under the impression that the pains in the chest, shortness of breath, dizzyness and problems with the hands and feet were due to being unfit as a result of being unwell. However, just after christmas i woke up unable to breath. I couldn't breath in as it was too painfull and i had pains in my chest and up into my head aswell as in my left arm. I was rushed into hospital where they did several tests. They ruled out a heart attack and a PE after a few hours of tests.
They let me go home the following morning with painkillers as i was by then breathing fine but still had a pain in the chest area. Dozens of tests and scans ensued as my consultant needed to rul out various things. Anyway, eventually a CT scan showed a thickening of the pericardium. He Now associates the breathing difficulties etc with this. A biopsy was done and this confirmed constrictive pericarditis.

Anyway, i have been given water tablets which i am told will help to eliviate the symptoms and hopefully allow me to go back to work. What i would love to know from anyone who can help, is it likely that this resulted from the radiotherapy? Also, what are the chances of these water tablets working? Do they usually?

I am sorry to have waffled on abit but it is alot to try and get across. I have been told that they can do an operation to remove the sac but they really don't want to do it. They already had a peek at my insides and said that they had trouble when deflating the lung to take a biopsy as it was all scarred from the radiotherapy.

Anything anyone can tell me about the recovery, lasting effects etc of constrictive pericarditis, would be really helpfull.
Many thanks in advance,
Archie.

[Lenin]

Archie,

First off, you have my heartfelt sympathy with all you have been through the last couple years.
I double you will ever get to the definitive CAUSE of that constrictive pericarditis although mid-chest radiation is a very likely contender. But the GVH disease is also right up there probably along with some of the chemotherapeutic agents used on you. But even then, half of the cases are idiopathic (cause never found.)

The disease is EXTREMELY serious and really is resolved only with rather intensive and dangerous cardiac surgery...pericardectomy.

You will get great symptomatic relief from the diuretic, presumably furosemide (LASIX or FRUSEMIDE depending on which side of the pond you're on. )

I don't think that going back to work is going to be an option for you. Taking care of yourself will be a full time job.

It is important that you get your ejection fraction measured to determine how badly your heart is damaged.

[ArchieX]

Thanks for the reply. I have had several tests and they even looked at the side of my neck (Something to do with Kussmaul's sign). However this is only faint which apparently shows it is in its early stages.
Its all abit much to take in at the moment especially with other things happening at the same time and having appointments in different clinics to tryand sort all the problems out, can be time consuming.
You say something about ejection fraction i presume they would have done this, but i will have to check as i have never heard them mention it.
...and yes it is Frusimide that i am taking.

Many thanks for your reply along with your kind words.

[ArchieX]

Just an update. i have had an exercise test (treadmill) and on the first incline, the doctor asked me to stop as i was struggling to speak to him and breath at the same time. He has checked the results and told me that he thinks an angiogram is required. The chest pains come and go and often vary in intensity when they do. He seems more concerned with how quickly i am struggling to breathe on exercise and how out of breath i am getting for someone who is not overweight.
Should i be worried about this? Is it likely, that there is something wrong with the blood vessels and he has ordered this to find out what? or is this procedure often done to rule out any problems?
If there was a problem, am i to assume that it is related to the constrictive pericarditis or is it more likely to be something else on top?
I hope someone can help with these questions, as at the moment my consultant that oversees my treatment is on compassionate leave and i am unsure when he is due to return. i am seeing temps who vary from visit to visit and don't seem to want to commit an answer.

Archie

[oceanabreeze]

I don't know if this will help but you can better believe few people don't understand it either. After having severe chest pains for three weeks ongoing and the doctors just telling me I'm overweight and not doing any tests I figured if I was going to die of a heart attack, than I would finally eat something I never do, as I am consistently overweight. I ate half a package of bacon fully fried crisp.

Pain description: pain like something was going to explode on the right side of my chest, then later, that same pain passed through my heart to sit on the left side, I then appeared with a clot in my left hand that looked like a big purple bruise for one hour in which it dissappeared. Prior to this I was having exploding pains in my brain. I had been eating hot spicey soups in the morning medicinally to ward off infections, and have found it cleans out my arteries...hahah too good.

3 times the bacon has saved me since - each time it took roughly an hour for the pain to diminish. Hard to believe. But if it can help someone else- just make sure it is fried crisp as I don't know if it is the fat or the protein. I notice that pork fat after it has been cooked doesn't appear to become a solid like beef - so stay away from beef fat. My mother experienced the same things recently with head pain and then chest pain and arm pain, and her doctors didn't find anything as they never did a SUPER exray which usually will diagnose crud in the veins plugging the heart. Also stay away from sugar drinks and take lots of A and E. Since it worked so good the first time at getting rid of the chest pain within an hour... I decided to try it three weeks later when the pain began to return. Success 3 times in a row and for sustained periods. And I only used to eat it once a year. But I still only use it when it is necessary. I had my first heart attack at 20. My cousin died at 20 with a heart attack. Now I'm 41 and glad to say I am still ticking.

All I can think of is of the famous actor who ate bacon and eggs and smoked cigars regularly - George Burns...bless his heart. I was thinking of him when I first ate that bacon.

Good luck. If it helps - Tell George Burns a silent thank you as I'm sure he will hear you.