I need feed back

On March 3rd I had a pacemaker installed,I am only 55 years old,and I know age has no requirements on heart problems. I wrote here for advice about this thing almost burning a hole in me and the mass of blood and puss that was coming out of my incisioin. The ER just sent me home and told me to take some aspirin. They said my blood work was good straight down the line, the thing is they didn't take any blood from me and I told the "Dr" that. I was discharged and sent home to feel like "crap",no antibiotics no anything. My "cardiologist" said that I always seem to feel like crap every time I come there!?On June 3rd I was rushed to the hospital with a very serious and life treatening infection at my pacemaker site. If I hadn't asked for a change in Dr's I would be dead.These last 21/2 weeks have been the most painful experiences I have ever endured.My new Dr wants to install another pacemaker on my right side. Of course I am having second thoughts but I fought so hard to live I will not give up because one dr didn't pay attention to his patients symtums and only worried about who was going to pay for the office visit.I am lucky to be alive and luckier to have a Dr that cares. By the way, it took 2 Dr's,21/2 hours to clean out the infection and cut out the leather were the old pacemaker use to be.Let us not forget the "angels that care for us also,nurses" What would you survivers do next?Thanks for listening.I have so much lost the man I once was,but I have gained a new found appreciation for a smile!

7 Comments

your own advocate

by daisy41763@yahoo.com - 2009-06-28 02:06:36

so glad u found a good doc to care.
i was very fortunate and had a great team, but i went away from home to get mine done. and the first thing they told me was watch for infection and seek immediate attention. you know dear we are our own best advocates for our health care we have to ask a lot of questions and be presistant sometimes ..
I am a survivor too and sometimes we got to do what we got to do to make it in life.

I think what your doing is on the right track.
and ask questions lots of questions .. god bless

hi craig!

by Hot Heart - 2009-06-28 03:06:11

Sorry to hear that you have been through such an horrendous time. The man you were is still there inside and it may take a while for him to come back out but i'm sure he will.

Best wishes and take care HH

Hi Craig

by Brendakt54 - 2009-06-28 04:06:11

As HH said, the man you were will be back and I'm guessing better than ever. I'm 54 and it's very hard to accept our limitations at this age.
If a doctor ever says anything like that to me ("You always seem to feel like crap......."), I would unleash my hormones on him and walk out. What the heck kind of comment is that for any doctor to say to any patient?? Glad you found a good one and on the mend.
Good luck to you. Let us know when the next implant is and we'll cheer you on :-)
God Bless!

Brendakt54

Hi Craig

by Roderick - 2009-06-28 05:06:09

Hey Craig

You did exactly the correct thing. Above all you alone need to be your best advocate. I’ve been through many infections exactly like the ones you speak of, and have switched doctors quickly because I didn’t feel it was given the proper concern.

The problem with infections is they can travel down the leads and go directly into the heart. From there the issues can compound quickly. Your second doctor’s suggestion of putting a new system on the other side is a good option. The doctors will likely completely removing the old system so as to prevent any possibility of the infection traveling down the old leads to the heart. I’ve had it done at least twice in the last 42 years of pacemakers. The infections can develop from many things and you’ll never know for sure what causes them.
I suspect my first was caused by my own refusal to slow down and let myself heal after surgery. When I was a kid (about 10yrs old) I hid my infections from my mother because I didn’t want to go back to the hospital. When she finally saw it she flipped out and it resulted in a 3 month hospital stay to clean up the infection, actually dig it out, set up an external pacemaker while they put me on heavy antibiotics until they were satisfied the infection was gone, and then place a new system in a new location.
I suspect the other one started when I was playing with my then 2yr old. She innocently kicked me square on my pacemaker causing a slight cut which then developed into an infection. I went to my cardiologist and didn’t receive the response I felt was necessary. I went to a new doctor and they did essentially the same procedure as had been done 25 years before. With new technology I didn’t get an external unit, it only took 2 weeks to get the infection under control, but I did get a completely new system on the other side, and the old system was completely removed and replaced quickly (within 2 days).

The point I’m trying to make is this can be easily fixed. The doctors need to get the infection under control.

The other point is, trust your gut. Obviously you were feeling like “crap” for a reason, he may not be the best doctor for you. Remember, you are your best advocate.

The final point I’d like to make is you can live a very normal, productive, fun and adventurous life with a pacemaker. Don’t let that alone limit you, it won’t.

Rod

Howdy, Craig!

by morgysmom - 2009-06-28 05:06:39

So glad you found a better Dr., and are now on the mend. You are right, you are very fortunate to be alive, and there must be a great future ahead for you, for you to have survived in spite of a very unprofessional, uncaring, insensitive "doctor"!!!!

As the above ladies said, the man you were WILL be back!!! He's just taking a little short siesta to rest and recover from a very challenging situation w/this particular "doctor". Your body is very tired and sore, but, you will feel better after this next surgery to repair the previous "docs" huge mistake. You didn't go through all that to just give up on all Drs. because of what ONE dr. did. You can do this!!

I have a daughter who is 16, will be 17 next month...she has had a pacemaker since she was eleven days old. She has had to have 4 different surgeries, for 4 different devices. She is tougher than nails!!! She can do ANYTHING she puts her mind to. She shows cattle, pigs, lambs, rides horses, former cheerleader, etc. Her last device was actually a pacemaker/defibrillator. She has had one shock from it, a couple of yrs. ago. IT SAVED HER LIFE!!!! For that, I am truly thankful to the Dr. that had the foresight to implant a pacemaker/defibrillator, instead of just a pacemaker!!! We have been blessed w/an excellent team of cardiologists at the hospital/clinic that follows her.

Hang in there, buddy, you really can do this, and you will feel better.

Take care, & God Bless,
morgysmom

Trust Your Instinct

by ppt - 2009-06-28 05:06:58

My Cardiologist's Physician's Assistant told me after many visits for constant SOB on exertion, severe fatigue, headache, and "bubbles" in my throat - to "Deal with it. It was all in your mind. Are you anxious?"

Also the Medtronic rep said "There is nothing more we can do for you".

I kept pushing and stood my ground. Finally got referred to an EP.

Months later, a great EP, and a month on an Event Recorder have all proved it is not in my mind and I am not anxious or crabby or a hypochondriac- ! I have pacemaker syndrome, chronotropic incompetence, as well as lack of synchronicity in the ventricles. I am much improved with new settings. The Medtronic Rep at the EP's office is super. Listens. And he can recreate my "bubbles". The EP cared, listened, read my past history and test results and although another surgery looms I feel like I am on the right tract now.

Can't imagine a Dr who sees pus and sends you home with no action plan!!!!!

Trust your instinct !!! We know our bodies!!!

Morgysmom

by cowboycraig - 2009-06-30 05:06:50

Your words hit home like the gentle force of a sludgehammer in a pillow case. Your daughter is a very lucky lady to have a mother like you. I lost a 3 year old son to a heart attack in the middle of the night,I tried to revive him,over and over and over but he didn't come home.Now its my turn!I I know this may not make any sense,but WE are 2 very lucky,no, blest people!! Thank you for sharing,Craig.

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