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Heart Disease (Expert Forum)
Constrictive Pericarditis Severe - Cont.
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Constrictive Pericarditis Severe - Cont.
by Storrie, Feb 03, 2002 12:00AM
Dear Doctor,
Thank you so kindly for your response on January 24, 2002. You were extremely helpful with wonderful answers.
I understand to a degree why you state to wait on the heart transplant because you believe it opens a whole new set of problems for me. Other then the rejection, what other problems does it pose me? Also, I do know that a percardiectomy carries a very high mortality rate for those of us that have, dense, extensive, severe calcification encased around the entire heart also adhered to the myocardium, which we both know can't be removed. The constriction is real and the pain in the last six months has been intense. I am currently taking two 100mg of MS-contin in the early morning and two 12 hours later along with three 30MG's of ms-contin IR spaced thoroughout the day and and night as needed. I can go days when the meds help so much that I have been able to function more now then in the last 6 months. The pain stabs in my heart for hours and radiates down my arm, along with a smotherly feeling. The swelling is under control with the duiretics (sp). I am stable but the pain sometimes reoccurs for days straight even with the meds, nothing I can do then except lay in bed and hope that it will let up, on those days it usually lasts two to three days, but sincerely, I have way more good days then bad. Do you have any suggestions for that. I am seeing a pain specialist that moniters me here in Las Vegas, but he is just learning about the disease himself since it is so rare to have it so severely. I own a marketing co and when I am painfree I am drafting proposals and doing great, sharp as a tack. The swelling is always a problem, but I know to hit the diuretics immediatly.
My question, is there something else to relieve the pain better, so I can live the best life I can lead with the time I have left or am I stuck with this pain, I sincerely want to stress to you that when the meds work, I almost forget that I am ill until something else crops up. I am able to work at home through my company so that has helped tremendously.
Another inportant question. Doctor, we both know that when calcification is attached to the myocardium, that cannot be removed to free up my heart. With both the mitral valve and tri-cuspid leaking so badly and the enlargement of the right and left atrium and the enlargement of the right ventricle, my heart is pretty messed up. Lets face facts if I did proceed with a pericardiectomy it would be temorary. If I lived through, the next step would be heart transplant. Is the protocal so that you must proceed with the pericardictomy first?
I know that I have became worse since I saw Dr. Klein, the fatigue, the pain and the swelling. But everything is under control except the pain. So, again, I am in no hurry for surgery...:::shaking in my boots::: I am only 39, where this "creeping crud," as I refer to it crept out, we may never know how or why, but at any rate, I know that I am dealing with the finest at your hospital.
I so appreciate your time with me, but after speaking with the doctor's in Las Vegas, it is hopeless, Not to undermind them they just don't see this and are baffle. Your knowledge is so vast, that I cling to it. Please let me know what you think. If you can please access my records. My Name is Catherine Brown from Las Vegas, Nevada. My doctor's which I stated in the previous letter posted on this page is Dr. Klein and Dr. Lylte. Also, the valves cannot be corrected during pericardiectomy correct? I was pretty sure I heard that but wanted to double check,
Again, thank you so kindly, and please let me know about help for the pain, is the pericardiectomy useless in a case like mine when it is so prominet, and adhered and encased. Do you believe since the pain has increased so radically, I should move up my visit to Dr. K and Dr. L sooner? This is the drag of having something rare. Very frustrating!! Thank you again, and God Bless! Catherine Brown EMAIL: ***@****
Thank you so kindly for your response on January 24, 2002. You were extremely helpful with wonderful answers.
I understand to a degree why you state to wait on the heart transplant because you believe it opens a whole new set of problems for me. Other then the rejection, what other problems does it pose me? Also, I do know that a percardiectomy carries a very high mortality rate for those of us that have, dense, extensive, severe calcification encased around the entire heart also adhered to the myocardium, which we both know can't be removed. The constriction is real and the pain in the last six months has been intense. I am currently taking two 100mg of MS-contin in the early morning and two 12 hours later along with three 30MG's of ms-contin IR spaced thoroughout the day and and night as needed. I can go days when the meds help so much that I have been able to function more now then in the last 6 months. The pain stabs in my heart for hours and radiates down my arm, along with a smotherly feeling. The swelling is under control with the duiretics (sp). I am stable but the pain sometimes reoccurs for days straight even with the meds, nothing I can do then except lay in bed and hope that it will let up, on those days it usually lasts two to three days, but sincerely, I have way more good days then bad. Do you have any suggestions for that. I am seeing a pain specialist that moniters me here in Las Vegas, but he is just learning about the disease himself since it is so rare to have it so severely. I own a marketing co and when I am painfree I am drafting proposals and doing great, sharp as a tack. The swelling is always a problem, but I know to hit the diuretics immediatly.
My question, is there something else to relieve the pain better, so I can live the best life I can lead with the time I have left or am I stuck with this pain, I sincerely want to stress to you that when the meds work, I almost forget that I am ill until something else crops up. I am able to work at home through my company so that has helped tremendously.
Another inportant question. Doctor, we both know that when calcification is attached to the myocardium, that cannot be removed to free up my heart. With both the mitral valve and tri-cuspid leaking so badly and the enlargement of the right and left atrium and the enlargement of the right ventricle, my heart is pretty messed up. Lets face facts if I did proceed with a pericardiectomy it would be temorary. If I lived through, the next step would be heart transplant. Is the protocal so that you must proceed with the pericardictomy first?
I know that I have became worse since I saw Dr. Klein, the fatigue, the pain and the swelling. But everything is under control except the pain. So, again, I am in no hurry for surgery...:::shaking in my boots::: I am only 39, where this "creeping crud," as I refer to it crept out, we may never know how or why, but at any rate, I know that I am dealing with the finest at your hospital.
I so appreciate your time with me, but after speaking with the doctor's in Las Vegas, it is hopeless, Not to undermind them they just don't see this and are baffle. Your knowledge is so vast, that I cling to it. Please let me know what you think. If you can please access my records. My Name is Catherine Brown from Las Vegas, Nevada. My doctor's which I stated in the previous letter posted on this page is Dr. Klein and Dr. Lylte. Also, the valves cannot be corrected during pericardiectomy correct? I was pretty sure I heard that but wanted to double check,
Again, thank you so kindly, and please let me know about help for the pain, is the pericardiectomy useless in a case like mine when it is so prominet, and adhered and encased. Do you believe since the pain has increased so radically, I should move up my visit to Dr. K and Dr. L sooner? This is the drag of having something rare. Very frustrating!! Thank you again, and God Bless! Catherine Brown EMAIL: ***@****
Doctor's Answer
by CCF-M.D.-CRC, Feb 04, 2002 12:00AM
Dear Storrie,
I am not a pain specialist but I have seen antinflammatory drugs such as Torodol and Motrin work well in these situations. There are side effects such as stomach upset and potential kidney problems so these drugs are not for everyone. Narcotics (e.g. MS Contin) are the strongest pain relievers and in some people are the only thing that will work. Antinflammatory drugs however may decrease the amount of narcotic needed. A good pain management doctor will help you to find the lowest doses needed that still control the pain and minimize the side effects of the drugs.
Concerning the transplant issue, again I would suggest having pericardial stripping surgery first. If there are problems during the surgery a temporary heart pump could be placed and then you would be #1 on the transplant waiting list. Dr. Klein is the best in the nation for this type of condition and you can discuss further with him the "pros and cons" of transplant vs. pericardial stripping.
If pain is the main symptom I don't think you need to move up your appointment with Dr. Klein. If however you are having increasing swelling or shortness of breath you probably should plan on making a trip out here a little bit sooner despite our snowy weather.
I am not a pain specialist but I have seen antinflammatory drugs such as Torodol and Motrin work well in these situations. There are side effects such as stomach upset and potential kidney problems so these drugs are not for everyone. Narcotics (e.g. MS Contin) are the strongest pain relievers and in some people are the only thing that will work. Antinflammatory drugs however may decrease the amount of narcotic needed. A good pain management doctor will help you to find the lowest doses needed that still control the pain and minimize the side effects of the drugs.
Concerning the transplant issue, again I would suggest having pericardial stripping surgery first. If there are problems during the surgery a temporary heart pump could be placed and then you would be #1 on the transplant waiting list. Dr. Klein is the best in the nation for this type of condition and you can discuss further with him the "pros and cons" of transplant vs. pericardial stripping.
If pain is the main symptom I don't think you need to move up your appointment with Dr. Klein. If however you are having increasing swelling or shortness of breath you probably should plan on making a trip out here a little bit sooner despite our snowy weather.
Related discussions
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Constrictive Pericarditis...severe (1 replies):In Feb, 2001 I had a chest x-ray that showed heavy calci...[more]
I would really like to speak with you if possible. I have a 76 yr. old father-in-law who has the same type problems as yours and desperately need advise. Could you please email me. I have many questions to ask if you don't mind. Thanks so much, Margee
***@****
I would be happy to answer any and all questions you might having concerning your father. I have been to a lot of hospitals and have read just about every study out there on this condition. It was about all I could do at the time is to research and educate myself on this. It is not an easy task, as it is rare, but if you dig deep enough you can find it. I was lucky to get some information from the Annuals of Internal Medicine on this disease that was not surpossed to be posted. I was able to print it out before they took it down. It has the stats on who lived and who died on a study they did with people with this problem among a lot more information. My email address is ***@****
I have another email address ***@****, but I tend to check the first one daily.
I am glad to help in all ways possible. I am heading to St. Lukes Hospital in Texas next to see what i can find out there.
Cathy