What are our options?

[kumom]

My husband has been on the heart transplant list since last July.  The facility he is listed with is shutting down and we are being sent out of town to be relisted with another facility.  He has dilated cardiomyopathy, moderately severe pulmonary hypertension and severe mitral valve regurgitaion.  He is unable to walk up a flight of steps without symptoms, breaks out in a cold sweat with the slightest activity and will be dizzy and nauseated if he bends to look in a cabinet, ties his shoes or anything else similar.  He currently is on 2 mg of Bumex TID, 25 mg Coreg BID,  25 mg spironolactone BID, 2.5 mg metolazone daily,  Advicor daily, potassium, magnesium, 2.5 mg benzapril daily, 81 mg aspirin daily and other meds to help him sleep.   His meds have doubled since being listed.  He has a biventricular pacemaker/defib.  He's spent 6 weeks in the hospital over the last few months.

My question, we are going to have to go 8 hours away to have the procedure.  He is out of the hospital now and fairly stable if you call taking 27 pills a day stable and able to do only minor activity.   What are our options?  I think our cardiologist has sent people to your facility, how do you handle the distance?  We feel in limbo land, is heart transplant the best option with his meds and diagnoses?  Just want to get others advise, we are losing a team of people we trusted and being sent out into the unknown.

[noheart4me]

I just wanted to reply to the possibility of getting a pump.  I was on the Heartmate2 for 13 months and while it did alleviate symptoms and led to mild recovery.  I ultimately insisted it be removed.  I could not handle life that way anymore.  Think long and hard/do research, before going that route.
Regards,  feel free to contact if you want to discuss the pump
Ally

[Encephalomalcia]

My friend's husband had a heart transplant 15 years ago. He is now 40 and doing well.  I believe he takes three medications a day.  He is able to live a normal life, snowmobiling and such.  Hope you and your husband get news of a new heart for him soon.  Take care.  

[kumom]

Thank you all for the comments.  I know that a heart transplant is the best option, I just keep hoping that things will change around and life can get back to normal.  A bit of denial I guess. The surgeon here said that we should prepare ourselves for a heart pump in the next 3 to 4 months.  He is sending my husband to Barnes in St. Louis.  Do any of you have experience with this facility?  I hear they are in the top 20.  We will just have many decisions to make about if we relocate or try to maintain two households while we wait.  I manage most of his health care so it would be difficult for me to be 8 hours away.  We have to eat though.

We have met several heart transplant recipients and they do amazingly well.  I just hope my husband doesn't get so sick that other organs start to fail.  He is only 55 and it is so hard to see him get weaker and weaker and be able to do less and less.   It is such a slow, debilitating disease.  

[Dr J Singh]

Hi,

With such a severe cardiomyopathy, I don’t anything else other than a heart transplant can help. There are no other procedures which can help him out. I can understand the pain of popping in so many tablets but unfortunately that’s the only way of treating this dreadful disease.
I hope that helps. Please do keep me posted. Kind Regards.

[grendslori]

I know at the University my daughter had her transplant at, they would not allow you to be listed with them unless you lived 2 hours or less from the facility. Remember that the transplanted heart has only a short life span once it is removed. Also, when you get to the hospital they do blood work to make sure that you don't have infections going on, things like that. Getting a patient ready for transplant takes time. We got our call at 9:30 and were on the road by 10pm, arrived at the hospital by midnight and my daughter went into surgery about 3:30-4 am. The fact, believe it or not, that your husband is not in the hospital is a good sign. The transplant teams we dealt with told us that they liked it better to transplant patients who were home; they tended to do much better in the long run because they weren't that sick. (where they needed to remain in the hospital because they were so sick. We're lucky because our hospital has taken a 3 floor section of the hospital and turned it into a hotel, right there in the hospital. Some patients who live far away remain in the hotel there awaiting their transplant.) I understand that you feel that your husband IS that sick, we've been there with our daughter. I remember she could walk on level ground for more that a few minutes without being exhausted and having severe angina, heck she was having severe angina sitting in a chair doing nothing. (she had Hypertrophic Cardiomyopathy where all of her ventricular walls and the septel walls were so thick that the heart had outstripped it's blood supply. Both ventricles had muscle 'bridges' growing though the chambers just making matters worse. She was having constant heart attacks. Along with this she had SSS with a duel chamber pacemaker, RBBB, LBBB, W-P-W and a Maheim Fiber in the ventricle) Believe me, I know what you are going through! Most people are put on the transplant list when the transplant team feels they have about 18 months to live. That gives the team time to find a donor. You must remember that a transplant is not a cure all. You are exchanging one problem for another and the drug regiment is strict!! The life expectancy is good; a lot of patients are living 10-20 years which is really good. My daughter will celebrate her transplant's 10 year anniversery in July. It has not always been an easy road, but it's been worth it, at least most of the time. Take care
Silvia  

[Encephalomalcia]

Looking at the heart medication and the amount of Bumex he's taking, it looks like he most likely is in needed of a new heart.  My mom's heart was extremely weak and she was on 1mg of Bumex (which her heart doctor said was a strong water pill).  If he's taking 2mg of Bumex three times a day, he must be retaining a lot of water which mean his heart is not working well at all.  If needed while waiting for the new heart, there is a heart pump that can be put in to pump the heart when the muscle is too weak.  Watch for any signs of nose, ear, lips, feet, or hands turning blue.  This would indicate that the heart is not pumping blood through the body and to the organs as needed.  If there are any signs of blue, he should be taken to the emergency room.  Not to alarm you (just to make you aware).  The medications are important and can really help.  Coreg is the best beta blocker in that it blocks more receptors.  It is stressful to have to wait.  I hope that you can get an answer soon.  Take care.