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Old 01-09-2007, 06:53 AM   #1
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Join Date: Jun 2005
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holly927 HB User
waiting heart transplant

Hi everyone,
I haven't been on here in a long time-I have been waiting for heart now for 79 days (not that I'm counting) Having a hard time, anyone else been through or going through this that could talk with me? I got called once on 12/11 had all IV's started ,talked with surgeon, ready to go and 5 min before I was to go into surgey it was no go!!! Talk about hitting a brick wall. Now I feel like I'm never going to get called again. Waiting is SOOOOO hard!

 
Old 01-09-2007, 08:05 AM   #2
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Join Date: Jan 2005
Location: Texas
Posts: 177
mimiof3 HB User
Re: waiting heart transplant

God be with you! Do you mind me asking why you are on a transplant list? You have to be so upset and rightfully so, to be 5 minutes from getting a new heart and then a no go??? Do you mind sharing with us why it was called off? Prayers are coming from here.

 
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Old 01-09-2007, 02:31 PM   #3
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holly927 HB User
Re: waiting heart transplant

The reason I am on the transplant list is 2 years ago I experienced chest pain that took me to the ER. Had stress echoes, ekg, nuclear stress tests, heart echoes. Everything was perfectly normal except that I have uncontrolled high cholesterol (313) and family hx of heart problems (father at age 50) The cardiologist I saw said the only way to be sure there were no artery problems was to do a cardiac cath (which by the way they make it sound like this is just another routine test and no big deal but I'm here to tell you it is a HUGE deal and NEVER go into this test lightly!) During the first 3 min of the cath my left main artery was dissected by the catheter. I was not in a hospital with back up surgery so I had to life flighted to another facility. This took over 4 hours and I had 3 heart attacks during that time. Had to be shocked twice and 3rd one took me out as they were taking me into surgery. I had a dbl by-pass and 5 weeks post op both grafts shut down and I went into severe cardiogenic shock. Long story short, 3 stents later and a defibillator I have a 20% EF, 30% of my left ventricle is scarred, I am in the hospital every 6-8 weeks in CHF. I do not tolerate the meds needed to help my heart as they make my BP to drop to dangerously low levels and I am becoming diuretic resistant so the amounts I have to take are astronomical. The docs at the Cleveland Clinic tried very hard to keep me off the list but nothing they tried seemed to work. A transplant is my only option and a very scarry one at that. Thank you for your prayers and support. Just to vent to someone who understands helps sometimes.

 
Old 01-09-2007, 05:46 PM   #4
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mimiof3 HB User
Re: waiting heart transplant

Oh MY! I just cannot believe this! How terrible! You must be a very strong person. I don't know if i could be as strong as you. I know that if I aDO INDEED HAVE RVD ( right ventricular dysplasia) ther eis no known cure...i think it is a very grim outlook and have become a cardia cripple. I am so afraid of sudden cardiac death. Just this past Ausust, I was on the treadmill for about 45 min a day and the recumbant bike for 4 miles. I don;t know what has happened to my life as i knew it. I'm sorry that I just posted this same question to you on another thread of mine.

 
Old 01-09-2007, 07:33 PM   #5
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Toneman HB User
Re: waiting heart transplant

I am so sorry to hear of your problems. I'm not completely sure, but I think you responded to me on another web site when I asked about the need for a cath. I was going through the same thing, chest pain for many months during which I went through two complete cardiac work ups with all the tests, echos, thallium stress tests, bloodwork.... you name it. I posed the question as to whether or not I should push for a cath and somone with a story identical to you made me aware of the risks and advised me to accept my negative heart tests as a blessing and move on with my life unless something changed. That person expressed her regret for not listening to her doctors and going on with her life. I took this advice and changed my life, got into exercise and diet and it has made a tremendous improvement in my life. I have lost a considerable amount of weight, controlled my blood pressure and cholesterol and I no longer worry about the day to day aches and pains and have focused on the things that count. If that was you, thank you. If it helps you at this time, know that you had an impact on one person.

I will keep you in my thoughts, good luck and thanks again.

Toneman

Last edited by Toneman; 01-09-2007 at 07:35 PM.

 
Old 01-09-2007, 09:05 PM   #6
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godsproperty000 HB User
Re: waiting heart transplant

I am so sorry Holly about your terrible trauma. I pray for you and that your phone will ring with a healthy heart waiting for you and will be transplanted with no problems. Hold tight sister, its coming.

As for Toneman, if I had listened to what my drs were telling me about going on with my life and accepting the results of all the negative cardiac testing, I may not be here today. Because of the symptoms I was having I was finally able to find a dr who would perform a cardiac cath on me and found a 90% blockage that no other test was able to detect. That was in May 2005, since then I had 4 more caths done and may be looking at a 5th, but I hope not. I am totally fine after all these caths, you just need a very skilled physician. If you are still having symptoms, I encourage you to get further testing.

 
Old 01-09-2007, 09:30 PM   #7
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Toneman HB User
Re: waiting heart transplant

pwarbur,

Don't get me wrong, if a doctor told me I needed one I would be willing to do so. My situation was not typical of CAD, I had atypical chest pain with a normal EKG. I only underwent the other tests because I could not get my mind off the possibility of CAD. After two cardiologists, two workups and one more trip to the ER with normal test results, I was only looking for a cath for peace of mind. What I needed to do was look at the facts and be realistic about my symptoms.

My cardiologist advised me against it because I had no real risk factors, both sets of tests were completely normal and as I said I was experiencing mild atypical chest pain. She felt the risk outweighed the possibility of finding anything of significance. In fact, she told me that if I wanted one I would have to find another cardiologist to do it.

In my case, it turned out to be a bad gallbladder! Once it was out the pain went away. It was found during my annual physical on an ultra sound of my liver for elevated enzymes so my cardiologist was right and I almost subjected myself to an unnecessary risk. Now if my symptoms were worse or if she reccommended a cath I would do one, I just won't search out a doctor willing to do one just because I asked for it. I think Holly would agree.

I do appreciate your comments, in your case it was certainly the right thing to do and we're glad you're still with us!

Toneman

 
Old 01-10-2007, 05:09 AM   #8
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godsproperty000 HB User
Re: waiting heart transplant

Thank you Tone... wow! the ever silent gallbladder. I heard that those things can cause problems lol. I recently had a gallbladder scan and it came up normal..so I am still having to deal with my symptoms and the wondering what is causing them. Trust me, I try to think of every thing else it could be besides my arteries...but sometimes and having trouble rationalizing. Hopefully this scan tomorrow will be a tell all and I can quit worrying. ugh..this is no kind of life..maybe i will seek out that shrink. lol..nah..i gotta have more faith then that. You know, people who are concerned about their hearts live in a nightmarish world, its an awful place. I feel for everyone on this board and pray everyone who posts or reads here finds comfort and healing.

 
Old 01-10-2007, 05:46 AM   #9
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Lenin HB UserLenin HB UserLenin HB UserLenin HB UserLenin HB UserLenin HB User
Re: waiting heart transplant

holly,

I wish you very well...I hope they get you a good heart soon and the transplant goes well.

Thank you for warning us about the risk of arterial catherization. I for one will think extra hard next time I feel I need one. There is need and there is NEED.

Had they given you a loading dose of Plavix before the angiogram?

 
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