URGENT: Cardiomyopathy and Heart Transplant

I have a dear friend who was diagnosed with dilated cardiomyopathy in November. She is 25, in excellent health otherwise, and was very active until this, running 5-10 miles every day. Her cardiologist wanted her on medications immediately but she delayed and did not begin treatment. Two weeks ago, after swimming she began to experience chest pains but did nothing about them for four days until she was in severe distress. She was taken to a cardiac care unit where they stabilized her did a cardiac catheterization. The cardiologist there told her she needed a bypass to give her enough time to obtain a transplant. He also told her that, based on her condition, she had less than a 50% chance of surviving the bypass.

She has still not decided what to do and seems most concerned about her quality of life and life expectancy after a transplant. I have read the few statistics available but need to know what the implications are for someone so young having a transplant. I am trying to show her than any chance is better than none. Any information you can provide would be greatfully appreciated.

Bob

[Cleveland Clinic, MD]

Dear Bob,

Your friend's medical picture is not completely clear to me from what you have told me but it sounds like she has what is called an "ischemmic cardiomyopathy".  This is due to blockages in the coronary arteries and can be improved with bypass surgery.  This would be rare in a young woman but is possible.

It is true that a heart transplant is replacing one 'disease' for another but I think that is probably several steps (if needed at all) down the road for your friend.  I would definatly counsel your friend to keep all her options open.  People who are very sick are not always in the best position to make good decisions.  If however she persists in refusing care there is probably nothing that can be done.  The hospital should have an ethics committee and you can ask her doctors to get an ethics consult.  A psychiatric consult would probably also be helpful.  If she is depressed an antidepressant will help.  All the best wishes to your friend.  If she would like to be evaluated here she can make an appointment in the heart failure clinic or her doctors can arrange to have her transfered to the heart failure inpatient service.

[mel]

Doctor:

I have tried to post for the last three days, I keep getting a response saying that the question limit has been reached for the day.  There is only one question today and none yesterday.  I have a question, more as I need advice.  Please answer this for me.

I am 29 years old and have a young little boy and I am worried about my diagnosis.  I was diagnosed with a ASD or PFO, never was able to get an exact measurement because I resisted during the TEE.  I had a Cardiac Cath, which was basically normal, but the doctor stated the ASD was very small.  My question is about my echocardiogram.  On that echocardiogram I had some abnormal measurements.  On the interventricular septum IVSd my measurement is 1.31, and the systolic measurement is 1.66 this is slighly above the normal ranges.  The listed that I had Septal Hypertrophy.  From information I have found that states I have Hypertrophic Cardiomyopathy.  I also had a slightly smaller than normal LVOT it was measured 1.77.  The left Posterior wall was 1.07 is Dialostic (in normal range) and 1.60 in systolic (slightly higher than normal range).

I have a low blood pressure, normally running in the 90/70's, so high blood pressure is not the cause.  

My cardiologist just basically said I shouldn't worry about this, and to be rechecked later in life.  I am very scared, as I don't want to die and leave my child.  My mother passed away at age 54 from a massive heart attack. (sudden death) she died instantly, no autopsy was performed, so we don't really know what caused her to die.

I really need to know for my own anxiety and stess that all this is causing worrying.  Since my meausrements were all basically "upper limits of normal", and the Cardiac Cath was very good.  Should I just assume that I am fine?  Should I get a second opnion?  Request another echo?  To note I had a echo in 98 that was completely normal, showed no evidence of ASD, or the hypertrophy.  I also have PVC's & PAC's.

I really appreciate any answer you may give me. I do appologize to the original poster having to post my question under their name.  Best wishes to your friend.

[Terrie]

Yep..me too.  I keep getting that error message as well.  Here is my question..

My Dad was diagnosed with an aeortic anneuerism.  He also has type two diabetes.  His surgery is scheduled for the 12th and it is 5.2.

Q1 - Can this surgery be sucessful with t2 diabetes???
Q2 - If so, how long before recovery???
Q3 - Where do they get the artery to replace the anneuristic part that they will remove?
Q4 - How do I check the certification/ specialty of Dad's surgeon?

BTW, I'm sure that I spelled the above wrong...but you get the idea.

Thank You,
Terrie

[Missy]

Comment to Terri:
Sorry to hear about your dad, just wanna pass on some information that I know about from the same situation. I dont know how old your dad is, but My Grandfather died 5 years ago from the same exact thing. We had to rush him to the hospital to find out he had an aortic anuerysm.  The doctors explained to the family that the Youngest, Healthiest of a person has a very slim chance of surviving such a surgery. So basically make sure your dad is in excellent hands and all my prayers will be with him. Good luck!!!!!!

[Terrie]

Thank you Missy!  I've got to admit, I'm scared wittless.  Did your Grandfather's burst?  Dad's was found before it burst.  He's in his 70's...and obviously not in the greatest health with the diabetes.

I think I'm prepared for the worst.

Terrie

[Missy to Terrie]

I dont think his actually burst. The way they explained it, was it had a "leak" which meant he didnt have a choice but to have the surgery or he would have adventually bled to death. And yeah it is scarey, but the best thing you can do is be their for your dad, and he's probably a little more at ease with it than you considering he is in his 70's. No matter what happens, he's in terrific hands!! God Bless

[bob]

Thank you doctor...I will try my best. Unfortunately she has left the hospital and I cannot get her to return. It would seem she has just decided to give up. She is still in pain and seems content to tolerate it until it goes away or the end comes. She is thousands of miles from me and what I can do is limited at best. I have no way of contacting her family members to try to get them to intervene. Still, I will try...Thank you.

[Staci H.]

There is no information about how someone might go about making a donation or giving corporate sponsorship.  Please post the information.  Thank you

[Christi comment for Bob]

I am sorry to hear about your friend.  I'm so surprised that someone so young and active had such a problem.  Did they say why his happened??  Did she have any warning signs prior to the chest pain??  Best of luck to her.

Christi

[Missy to Terrie]

Terrie after your dads surgery, please let me know how everything went. Good Luck!!!!!

[Bob to Christi]

Thank you for your concern Christi. It seems they have told her that the damage probably had been ocuring since childhood. Her chances of surviving a bypass are less than even because they say there is not much to connect to once they bypass. She also has decided she does not want to go through the transplant process and all the medications and side effects. I have still tried to get her to go somewhere where there is some real expertise to see if she has any other options than to just wait and see, which is all she is doing now. It is such a crime too...she is such a dear and wonderful person.

[Joanne]

My mother has suffered a massive heart attack 5 months ago. She has been in and out of hospitals since. The doctors believe that medication is her only choice at this time until.... no clear answer can be obtained at this point in time. If balancing the medications were still not going well come March they might consider thinking about a heart transplant. This has only been mentioned once.
The latest cause for admission to the hospital has been bloodclots, many, but unfound. They have ran several test on her for the past 2 weeks and they can not find the source or the bloodclots. Her heart is now working at 24% which is better than the 18% 5 months ago.
We are now patiently waiting for the doctors to once again go over all the results to decide on the next step and in the meantime she was described as a 'walking time bomb'.
I am wondering why she can not be put on a transplant waiting list.
If you have any suggestions I would appreciate it. I am very often not around at the time the doctors are there but I have a feeling that she is not on the list due to medical reasons that either she would not be able to withstand a transplant or there are a heart transplant would be unsuccessful in her case due to ??.

thank you
Jo

[Jodi]

Doctor,
    Last 04-15-99,I was diagonised with mitral valve stenosis,after having a TEE done and an echo done. I also wore a halter monitor and EKG's done at every visit. My heart rate was 135 beats a minute and the Stenosis was believed to be moderately severe.I was then scheduled for valvuplasty(sp?)done four hours from where we live. They damaged the mitral valve,and I now have the regurge as well.I am only 30 years old and at first they believed it to stem from Rhematic Fever,after the last surgery they feel it was from birth.They believe I had 6mos.-1yr. after the procedure done.At my 3mo.visit,my Zestril was increased by one whole tablet,and I am currently wearing a Haltor Monitor, because of having to elevate my bed,lifting my 3 yr. old is to hard,normal every day activities are becoming more complicated now.And I am beginning to feel the way I did before I had the last procedure done where they go through the ateries in both groin areas.Could it be that I am getting close to time for the valve replacement already? When I question my Cardiologist results of my tests seem to be a secret,and with 3 small children and a husband I am a little concerned
                  Thank You,
                           Jodi
               ***@****

[sandy ardoin]

hi my husband had dialated cardiomyopathy, congestive heart failure, atrial fibrillation and had only a 20% ejection rate. two months later we were cardioverted for the third time and now have normal sinus rhythm and our ejection rate is up to 65%. in the last week his b/p readings have been in the 170's over 100's, he has gained 2.5 lbs. overnight, and his hands are swelling. our dr. says not to worry, they are seeing if his body will correct itself. no one told us any other info. he is 43. what are our chances of the a-fib reoccuring and could our ejection rate decrease again. what can we expect. we have to children and need to know the out come at least in most cases. your reply would be greatly appreciated.
thanks
sandy

[lisa]

Hi Everyone,

I have responded to several of the postings on this site.  Hope I'm not annoying anyone too much.

My father underwent cardiac transplantation 11 years ago due to dilated cardiomyopathy which led to end stage heart failure.  He is still with us and doing very well.  From what I have seen and heard (my next door neighbor is the transplant coordinator at a hospital in my city) and due to my father's outcome, I believe transplantation is a very desirable option for those suffering with a failing heart.  Yes there are risks with the potential side effects of transplantation but it can certainly return a person to a quality of life had prior to illness.

I have the same condition that my father did as does my 12 year old son, my sister and her little boy.  I would not hesitate to undergo the procedure if my condition were to worsen.

I hope your friend has done well.

[Bob, Please Read!]

Bob, please read my response above.  I am Lisa.  Please convey this information to your friend.  There are lots of transplant recipients who are willing to talk with people who are ill needing a transplant.  My Dad has spoken to many and eased their fears.  Check into that.  I know my Dad would even talk to her.

[Bob for Lisa]

Thank you Lisa. I have tried to get her to talk to someone but she has decided that, if she cannot be as she was, then she does want any treatment. To her, the risk of the bypass surgery (less than 50-50 in her case) to even get to a possible translant is not worth it. Plus, they have told her that, due to recent changes in policy, she would not be high on the list for a transplant because her condition is too bad. I had hoped with her young age (25) and overall health, she would be high on the list. So, she just gets through every day as best she can and waits.

Thank you, though, for your sincere interest. I am in the "hope for a miracle" stage at this point. All my best to you.

[Lisa for Bob]

I'm very sorry to hear that.  I know it must be very frustrating to have someone you care about unable to go forward with treatment.  I truly do feel for her.  I have thought about her very much since reading your posts.  My hope is she will go through grieving the loss of herself as she has known herself, then have the courage to try to live.  I know I grieved for at least a year when I found out about my and my sons cardiomyopathy.  Best of luck and take care.

[Bob for Lisa]

Thank you again Lisa. I share your hopes also, but the grieving has been going on for a couple of months, and I fear she will never get past it. I just try to be supportive and pray she decides to try to live. I wish I knew how long she has before it is too late to do anything. She said again the other day that she would take the risk of treatment if they would tell her she would be as she was...she says she just wants her life back, she wants to be able to have children, and all the other things that were ahead. It breaks my heart every day.

[brian]

I have been diagnosed with idiopathic dilated cardiomyopathy and am 54 years old. My ejection rate when I left hospital in late November 1999 ( Had been admitted ccu for heart failure) was 27.
I have just had another echo (march 2000) and don't see cardiologist until April 2000. My echo result was ecjection rate of 24. Any comments on longevity, further actions necessary would be appreciated

[Alyssa]

Dear Doctor,                                                              Hello! I am Alyssa from Dracut,MA.All the imformation in google is good,but I do not know where the printing button is.    I am ever so sorry that it isn' an impotant qestion,but it is important to me and my best friend hyun jung,because we chose to do the heart transplant for our school's Millennium Fair.Again, I apoligize that it is not important.But it will be nice of you if you helped me.                   Sincerly,                                                          Alyssa

[Rachel Higgins]

Hello, my name is Rachel and I'm doing a report about heart transplants for English at McLoughlin Middle school in Medford, OR.  My teacher, Mrs. Foley, requires that we interveiw at least one person about our subject.  I don't know any one who has performed a heart transplant or anyone who it has been performed on.  I would greatly appreciate it if you would answer the following questions before or on this coming Saturday because my report has a deadline that I have to meet.

How many prescription drugs is the average person on after having a heart transplant?  
What are the most common drugs?
What is the biggest cause/disease that requires a person to have a heart transplant?
If for some reason the new heart doesn't work, can they recieve another one?
Are hearts that people donate always used if they are in good condition?
Can  a heart that has been donated always find a new owner?
Is there a chat room where one could talk to a transplant recipient?
Does a new heart have to be exactly the same size as the old one?

Thank you so much for your time!

[Patty Boss]

What is the best hospital in or near North California for heart transplants?  My relative was just diagnosed with a need for a transplant. The diagnosis was given at UCLA, although the patient lives in Northern California. I am wondering if she should stay at UCLA, or go to another hospital closer to home.

[Bobbie]

My husband has congenital cardiomyopathy.  His 39 yr. old nephew is worse than he is.  My husband has five fingers,  no thumb...nephew has normal hands,  but the heart disease. some of his family are upset that my husband is doing better than the nephew,  since he is older. They think he should live longer because he is young.  The nature of the illness is that the younger the diagnosis,  the faster the patient deteriotes.  Also,  we eat right and take care of him.
He is under the care of Dr. William Zoghbi,  Baylor, Houston.

[tapauli4]

A related discussion, Hello It's not really a question was started.

[lorilisa1]

A related discussion, My 20 year old son is non-compliant was started.