Urgent Help Needed Complex Case

I am in need of some urgent advice regarding my Father, who has the following condition:

* serious congestive heart failure (20% of heart working)
* 20 yrs ago 4 bypass, with complication of staph infection in chest, loss of most of breast bone, and dorsal flat reconstruction
* coumadin use 5-7 mg per day for 20+ yrs.
* diabetes on insulin with 8-9 A1C
* blood clots in his heart currently and at least since 2006
* received 4th pacer 3 yrs ago which is a combo pacer/defib.
* having several events every month currently
* Dr.'s say he is 98% dependent on pacer/defib.

Current situation:

* current pacer/defib. almost dead - has 2.35 volts left, and will be not working at 2.15 volts (dr. said today he is 98% dependent on pacer/defib.)
* when he received current (above) pacer/defib. and old lead that is no longer working was severed and unable to be removed, and left inside. Therefore, a thorasic surgeon had to stitch a lead on the outside of his heart rather than through the vessels.
* all lines except the severed one are working fine, just running out of device life/battery

Plan of action:

* immedate replacement of the pacer/defib. by Venkata S. Sagi, M.D. (an elec (3 yrs ago 2 dr.'s tried unsuccessfully to do so)tro physiologist?) - scheduled for Friday, 4-11-08.
* Dr. wants to remove the severed lead because there are better tools now (3 yrs ago 2 dr.'s tried unsuccessfully to do so)
* If successful removing it, they want to put another lead in its place (it will use less juice) and have the one stitched on the outside of the heart left in place as a back-up source of juice.

I am concerned that something could go wrong in the removing of this inoperable lead - that something could break off in there (part of lead or a clot) and cause a problem. Dr. says in that event, they will go in through the groin and get whatever breaks off worst case.

My questions are:

* Are we working with the correct specialist?
* Should more than one specialist be involved?
* Is there someone in the country that specializes in these difficult cases I can consult with?
* Should we leave the broken lead alone since we know the man has blood clots in his heart already that coumadin doesn't disolve?

I don't have much time and am fearful that this event could take my father's life. Can you help me?


Angela Seymour
904/704-9726 (phone)
seymourrealtor@aol.com (email)


5 Comments

Other opinions

by auntiesamm - 2008-04-09 03:04:03

I am sorry your father is experiencing so many very difficult health problems. He must be built of sturdy stock to have withstood all this. You are a terrific daughter for seeking help. Where do you live? Is there any possibility of getting to the Cleveland Clinic Cardio Dept? The reason I ask is this: Steve Nissen, M.D. is Chairman of the Dept. and he has a sterling reputation. Many years ago I worked for his dad who was an OB/GYN specializing in GYN surgeries. By many he was considered a front-runner and ahead of his time in some instances. Not everyone liked him but he took on cases others were reluctant to handle and his patients did exceptionally well. I knew Steve then as a teenager & now he is a brilliant cardiologist, much listened to advocate for patient and drug safety. (Vioxx) It is no surprise to me that Steve Nissen is truly a "chip-off-the-old-block". Could you possibly get your dad to Cleveland Clinic for a consultatin? Or, if not there any major medical center with a "Center of Excellence" in Cardiology? I hope you can find the care and expertise he needs and get him stabilized. My prayers will be for your father and you in this trying time, to get the right answers and to keep you strong for him. It is so important to have someone who is willing to advocate as you are. God bless you, Angela.

Sharon (So Calif)

Opinons...

by Swedeheart - 2008-04-09 07:04:16

Hello,

Please let me join in and say ~ great daughter you must be! I am sure your Dad appreciates the assistance you are giving him. I too am not a health care professional so my advice is just things I would do, you must make your own decisions. I would, however, consider the following:

Does your father have a current, and complete health care directive? Does he have someone listed who can speak for him and/or make decisions for him that know what he wants? Does the doctor and hospital have a copy? Even with the best health care directives it gets difficult sometimes... I held the power of attorney for healthcare for my mother and it helped me really be able to assist her in emergency situations. My father was another story... I did not hold power of attorney, my step-sister did and when he had an emergency she was in Europe on vacation and unable to be reached. It was a nightmare. My Dad suffered because no one could make a decision for him when he could not speak on his own behalf.

I would also call (today) the doctor's office that is going to perform his lead removal. I understand there are newer techniques that are safer than 3 years ago, but my understanding is they are tricky and have some risk involved. You might ask for details on what they will be doing. I have read sometimes they remove the old leads, then have the patient "recover" a couple of days and then insert new ones. This may or may not be applicable to your father's situation ~ I do not know. But get all the information you can, and ask the doctor how many successful lead removals he has done this year. I would also ask what the staph infection rate is at the hospital where he will be treated. You want someone with oodles of successful experience under their belt and a hospital with the lowest infection rate you can get to! Your time is short from the current surgery date, but you do have time.

Good luck. Please send our best wishes to your father. If all can be successful he may have an opportunity to recover and enjoy better days. "May the force be with him!"

Swedeheart

Private msg

by swilson10 - 2008-04-09 07:04:43

Angela,
Please check your e-mail as I have sent you a msg there detailing some contact information for the surgeon I worked with in So. California and the information I have about him. Lead extraction is a more complicated procedure and it is my opinion that you want to go into that with good information and a high level of trust in the surgeon.
Best wishes, Shanna

second opinion

by CathrynB - 2008-04-09 11:04:35

Hi Angela,
I agree with your assessment that your Father's case is extremely complex. Very few of us on this site are medical professionals, and I personally would feel irresponsible to offer you medical advice regarding your father's treatment and options. My suggestion would be that if you are unsure how to proceed, you seek a second opinion from a different medical practitioner in the same area of specialty as Dr. Sagi. Doctors want to do good work with good outcomes, and a doctor worth his or her salt is not afraid of a second opinion and would not take it personally when a person facing life-threatening health issues and treatments seeks further information and validation of proposed "next steps".
Please give your father our best wishes for successful treatment of his health issues and keep us posted on how things go for him. He is very fortunate to have a caring, involved daughter advocating on his behalf. You are to be commended.
Take care, CathrynB

Thank You All

by seymourrealtor - 2008-04-10 11:04:48

Thanks to all who have responded to my posting about my Father. He is already a miracle to be here, and I am just trying to keep the miracles coming. I am pursuing all of your suggestions, and want you all to know that I really appreciate your suggestions, and your kind and caring wishes and comments.

Angela Seymour

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