not so good news from the doc

[momofthree]

Dear all,

I would appreciate any support you can lend. When I first started looking on Brandy's site a few months back, I read so many different stories and really got a feel for the different roads of recovery. They helped as I did not seem to fit into any "normal" category for recovery. Anyway, my cardiologist called me this morning and told me that due to the lack of improvement in heart function/EF (I am still at 10 to 15 percent after being out of the hospital for about 2.5 months) that I had to meet with a transplant doctor and that he wanted me to have and ICD implant asap. It was discouraging. I still believe I need more time. I was malnourished, dying, in heart and liver failure, unable to eat at all and separated from all my family. It was hard. I was told I would not come off IV meds probably and that I probably would not recover. At one point they did not know if I would live at all. But I did. I am feeling better and more active now. My appetite is back and I can eat most anything now without vomiting. I am finally back with my kids after a few months of separation and have been very happy with that. Now it seems that my heart can start to heal but I know it is a slow process for most. Your support is needed. Thanks...Alison

[mom2gageandkeely]

I wish I knew what to say. I think Serena is good example for you- Look at what she has been through and how she is doing! Maybe you should get a second opinion. All in all I am sure you want to do what is best for yourself and your family. I am sorry for your rough time right now, hang in there, keep faith Jenn

[marissar]

This is a good ? for Dr. Fett or Serena. Sorry I'm no help here.

[mikeyandBellesmommy]

I certainly think time wil be in your favor, I also think a second opinion is always a good idea. I would certainly listen to yuor docs though and do what they say. YOu may recover and when you go for your meetings with the specialists find out a transplant will be not be needed. There have been girls on ehre that found out at the last minute that there hearts had taken a little more time to recover but DID prior to being put on any lists!

I will keep you and your family in my prayers ad I am hoping we see more improvement at yournext appointment, you really just never know..

[JAMESFETT]

Each individual is unique and different. Healing comes at different rates. All that I have experienced with PPCM over the past 20 years leads me to never give up hope, and to never doubt that healing can come even months and years after the diagnosis of PPCM. Do what is necessary, and work with your doctors, but they, too, need to be convinced of this fact: healing in PPCM occurs at an unpredictable rate. PPCM is a unique form of cardiomyopathy with the potential to heal months and years after the diagnosis. I also think the day is coming when we will learn so much more than we do now, such as: 1)those with certain autoantibody profiles may benefit from immunomodulatory treatments, 2)those with viral particles present may benefit from anti-viral therapy, 3)endomyocardial biopsy with special studies may help us to sort out the best treatments, 4)peripheral blood special tests may tell us who still needs treatment and what type of special treatments. That's the trend of future studies and insights. For now, the lesson needs to be: don't give up hope; healing comes at different rates.

James

[margaretinva]

I'm sorry to hear that - please don't be discouraged and know that my thoughts and prayers are with you!

[mandyb]

Please know that you have a lot of people thinking about you and praying for you.

Mandy

[momoftwoboys]

I would suggest that you definitely get at least a second opinion first. I didn't see any improvement for the first whole year. Then I got a second opinion and my new cardiologist switched my meds up a little bit and I saw drastic improvement within 6 weeks. My EF, however wasn't quite as low as yours was (it was at around 30%). But, in my opinion, I don't think 2 1/2 months is long enough. I'm not a professional and I don't know your total situation, but my instinct would be to at least wait 6 months before making such a big decision (about the transplant at least). How old are you again and how long were you in the hospital? I know you've probably heard this a thousand times, but try to stay strong and don't ever give up hope. We are always here for you when you need to talk. I'm sending you extra prayers for strength to get through this. Keep us posted.

[tabs]

Alison,

I am so sorry that you did not get better news. I found that sometimes I had to "humour" my docs while telling them that they were wrong. They soon learned to listen to me and to run more tests. I have an ICD and it is important to have when not in hospital and having such a low EF. I suffered a cardiac arrest, which took everyone by surprise, while in the hospital. My EF at that point had already improved from 7% to 13%. I would not have even been in the hospital at that time if it had not been for some complications and God. A new thing that they are doing with ICD's which may help you, is pacing both the atrium and the ventricles. It has been shown to increase EF numbers in patients.

Having the ICD was insurence for me and it allowed my doctors to treat me more aggresively. They were not to worried about overmedicating me because they knew that my ICD would pace me if they dropped my heart rate to low. This may have helped me to recover some of my function.

If you have any questions about ICD's, please don't hesitate to ask.

Twilah

[melissamph]

Allison,

Sweetie you have just been prayed for and I will continue to pray for you as you take this walk. I know as a nurse and as a PPCM patient and more importantly a mother of 3 myself.........words can encourage but you will need to have the hope and faith that only God can give! I pray that for you and your family! I believe! The nurse part of me believes that you need a second opinion from the top heart failure doc in your area without a doubt before you proceed. God Bless you and your family!! I will be praying for you. Please feel free to contact me with any prayer needs you may have!

[SusanD]

Aww..don't lose hope ! As everyone else said, healing can come at different rates. I am sick right now and not feeling like writing a well thought out paragraph, but my one and initial thought for you is to continue exploring this with both this Dr. and another doctor. The research right now supports the use of AICD's in patients whose EF is <30. Sudden death due to ventricular dystrhythmia is a major concern and time may definitely not be on your time unless this aspect can be covered. An AICD *would* allow you the one thing you want...which is more time to let your heart recover. Does that make sense ?

I'll write more later, but just wanted to plant this little thought in your head.

[Natasha]

Alison,
It must be frustrating! It would be devastating to see no improvement.

However, I think that you should consider visiting the transplant specialist. Just because you see him/her does not mean that you will have a transplant. Though, if a transplant becomes necessary, it will be important for them to have all the information on you and to be familiar with your history. You do not need to admit defeat in order to go through with that appointment.

Also, there is nothing wrong with having an ICD implanted. I have had one for 3 years and am a survivor of sudden cardiac death. I am extremely fortunate to have survived SCD before having an ICD. 95% of those like me don't make it. An ICD is the back up policy. It hasn't prevented me from doing anything. The surgery was minor. I was released from the hospital with an EF of 10% and talk of visiting a transplant specialist. Every moment I thought that my heart might stop again. Knowing that the ICD was there to protect me gave me great peace of mind.

Also, as Twilah said, many with ICDs have seen improvement in their EFs. Within 3 months I was up to 40-45% and there were no more talks of transplant.

I understand that it is scary to hear those things. To me, it sounds like your doctor is being appropriate and cautious. I hope that things improve quickly for you now that you are back with your children. The ICD might be just the thing to move that along. We're all thinking of you. Let me know if I can share anything else that might help!

[SerenaWelsh]

Alison,

I'm right there in your boat. My recovery (or lack of) didn't fit anyone elses either. I was in the hospital for a month, waiting for precisely the right moment to delivery a baby that I "probably wouldn't live to raise." Every single day when the cardiologists walked into my room, someone had to make a comment that, "at least I was still able to sit up."
My EF at discovery was 5-15%. My EF today is 10%. I am followed by a cardiac transplant team at Duke University, and have been through the workup for transplant twice - once while still in the hosptial, and once again a few months ago. Duke was/is my second opinion. I started my treatment at UNC. I sought a third opinion from University of Pittsburgh Medical Center (UPMC). All agree that what is being done is the best that can be done - for now.
Seek a second or a third opinion. If you, like me, hear that there's not some magical cure they haven't tried yet, you can at least be comforted in the fact that your current doctor is right on top of things, and giving you the best care available. Or you may find that indeed, there is more that can be done. You can't lose either way.
Through my monthly blood tests, we've learned that I'm currently experiencing a decline in both kidney and now liver function. Neither are treatable at this point, other than additional doses of lasix to ensure the fluids are being removed from my body.
Next month, if the tests don't show some stabalization, then we have to "talk about options." I'm not ready to even research those now. I'll wait to hear if it's even necessary. I like to take things as they come now - plan for tomorrow, live for today.

Now I'm rambling. Just know that you've got a great group of women pulling for you, and that you're truly not alone. We don't all fit the same recovery profile. :rolleyes:

[momofthree]

Hi All! Thank you so much for your posts. I was very uplifted by your words and the demonstration of support after some shock to my system. You are a blessing and it makes a difference to hear from you. I am no longer staggering at the news. I am scheduled to see a Dr. at the Univ. of VA who has always come highly recommended. I was supposed to see him originally. When we realized I could not stay in Okinawa, Japan, I got into touch with him. Then, I went back downhill so that was never fulfilled. But lo and behold it has come around again. I see him on the 28th of this month. He is not only very good but he is on the transplant circuit there. Not thrilled about that but believing for healing that will end that issue. As for the ICD, it would happen in June if my EF is not where it needs to be. I am at peace with this now but hope to avoid it.

I was not on Coreg at dx. I started it while in the hospital in Portsmouth and just got to the highest dose I can be at -- 25 mg two times a day. I think that makes a difference because I feel so much better now with it at that level.

For you all, thanks for the prayers and for your compassionate hearts. For those recovered, your wisdom and thoughts are so important. For those still recovering, let's hang in there. Dr. Fett is right, it all comes at different times and we never fit into a mold. Serena, you are now a permanent member of my prayer list. I lift us all up as much as possible.

Alison

[ibvalerie]

HI Alison

I was DX in June of last year. I had to have my son early so I could be treated. At DX I was at 10% then bounced up to a 15% (if you call that a bounce?) I have stayed that way. Then in Nov. of last year I started hearing talks of the ICD, with a pacermaker. (I already had a pacer for existing heart problems) I was also told I would need a transplant. I had the bi-vent. ICD placed in March. I did have some complications (which I never had before in my other 5 pacemaker surgeries) But I got through them. I had a echo done 2 weeks after the surgery and my heart has responded well. I was at a 20-25% EF. SO the Drs are happy, and my heart they think will still improve. I saw the tranplant team, and they are going to follow me for now, but I dont need a new heart right now. I know how scary it can be. Hang in there...


Anyways (((((Hugs)))) to you!

[Lisa V]

You are in my prayers and thoughts and please try to stay positive. Positive thinking can have tremendous results and it will be coming your way very soon. Your heart just is taking longer than most but it will get better. Go for that second opinion and see what they have to say. Please let us know what happens and try to stay strong, I know it is hard but you have to make these doctors WRONG in their diagnosis's....................................