26yr. old DS diagnosed with congestive heart failure **UPdate**

[mamo-4-wdw]

My ds26 has been diagnosed with congestive heart failure.The Dr's gave him a amonth to live
I am distraught to say the leaset. My DM75 is our rock and only cries when she is alone. My DS18 is in complete denial.
We need your prayers and if any one knows anything about this please help us to understand.

 

[onesadduck]

I'm am so sorry for that awful diagnosis! Do they know why? I have known a few people with CHF that all lived, but in those cases the doctors just treated it and did not give them an estimate of how much time they have left. I pray that they find a way to fix your son's CHF. Is he a candidate for a transplant?

HUGS I hope you and your family find the strength to make it through this.

I was recently at the Western Wall- I wish I had known of this to pray for your family when there (but I did ask for a blessing for the whole Coping and Compassion community as everyone here is struggling with something). You'll be in my prayers here at home.

 

[Mackey Mouse]

I am so sorry to read this, 26 years old is way too young, do they know what is causing it? I really do not know anything about this, maybe others will come forward who do..

Absolutely will send positive energy your way...

 

[minkydog]

I'm so sorry. I thought it was terrible when my DH was diagnosed with CHF at 47, but 26(!) You all must be in shock. I hope your son is a candidate for heart transplant. I really hope his doctor is great and his prediction is wrong! Warm hugs to all of you. I can't imagine your family's pain.

 

[KPeveler]

In the midsouth, I would go to the Baptist Heart Institute in Memphis... they may be able to help with new trials or treatments.

do they know what is causing it? CHF at 26 is incredibly young...

and hope there is someone out there who can help

 

[safetymom]

I am so sorry to hear about your son. I will keep you all in my prayers.

 

[Pea-n-Me]

I implore you to go to one of the best teaching hospitals you can find that specializes in heart failure. Go out of state if you must. There are not only transplants, but other options as well, such as VAD (ventricular assist device) therapy. Has he been under the care of a cardiologist specializing in heart failure, or is this totally out of the blue?

Here's one, as an example: http://www.pennhealth.com/cardiac/hup/transplant.html

 

[Mskanga]

I implore you to go to one of the best teaching hospitals you can find that specializes in heart failure. Go out of state if you must. There are not only transplants, but other options as well, such as VAD (ventricular assist device) therapy. Has he been under the care of a cardiologist specializing in heart failure, or is this totally out of the blue?

Here's one, as an example: http://www.pennhealth.com/cardiac/hup/transplant.html

Please listen to this .....do not give up .

 

[mamo-4-wdw]

Yes this was completely out of the blue. My mom took him to a walk in clinic because we thought he had broncitis. They sent him by ambulance to the ER at our local hospital. They took 12 vials of blood and did every test you could think of. Then they did some xrays and said there was liquid around the heart. They sent him home with no meds and no Dr. referal.....nothing!!!
We are not giving up.

 

[Pea-n-Me]

Then even more so what I said above. There are medications and therapies he should be on now which will help his condition. People in this condition often come into the hospital for the first time and massive amounts of fluid are taken off so the person can breathe and feel better again. Please call, or even go to the ER of the hospital in the link above. Local hospitals and clinics very often don't know how to deal with this degree of heart failure.

 

[rangermom]

Listen to PP. Get a second option. I don't kmow much about CHF, but people do survive and I hear there are a lot of treatments.

Your family is in our prayers.

 

[TandT]

My ds26 has been diagnosed with congestive heart failure.The Dr's gave him a amonth to live
I am distraught to say the leaset. My DM75 is our rock and only cries when she is alone. My DS18 is in complete denial.
We need your prayers and if any one knows anything about this please help us to understand.

I'm so sorry to hear about your son. There HAS to be SOMETHING they can do for him to extend his life!!! I was diagnosed with restrictive cardiomyapathy when I was 24 years old. Apparantly I was born with it and never knew until I started going into Congestive Heart Failure at 24.

It was VERY scary. I was just your typical young woman when I started to get sick. This was in September of 2000. I was fortunate enough to recieve a heart transplant December 2000. I can feel the pain and anguish that your family is going through. It's been 8 years post transplant and I am sick AGAIN....with Congestive Heart Failure. My donor's heart was really small when they transplanted it(pediatric heart) which worked really well since I was really small. But since then I have grown more and the heart has NOT. So it is now stiff and I am going through heart failure all over again... rare case

But I have to ask you....does he qualify for a heart transplant??? You NEED to get SECOND OPINIONS. I was treated at the Cleveland Clinic..IN OHIO...one of the BEST hospitals in the US for treatment of heart conditions AND BEST when it comes to heart transplants and LVAD devices which are basically mechanical hearts to help keep the heart functioning until a real heart is available for transplant.

I know when I was first diagnosed I felt soo alone. Being so young and having such an illness was devastating. I had to give up sooo much. But in the end, my life was extended 8 years and for that I am VERY grateful.

What my future holds......I'm not sure?? My doctors did tell me that my heart will start to give out within a year or two. I am hopeful for a second heart transplant!!

My thoughts and prayers go out to your son and your family. Please feel free to contact me if you have any questions or you just want to chat.
beautifyyourskin@yahoo.com

Take Care!!

Teresa

 

[starann]

I would take him to another HOSPITAL to get a 2nd opinion. There are meds available to treat the extra water that most CHF patients get and can not get rid of (which causes swelling and fluid in the lungs which leads to coughing and 'wet' sounds in the lungs).

Does he have any other medical conditions? I do know in cases of Down Syndrome (or another congenital defect) they might not transplant (I'm not saying that is right or wrong, just what I have seen as a nurse) but they would still treat it.

keep us posted!

 

[donaldduck352]

Like the op's sayed donn't give up.Ther is other options and roads to look at before doing that.26 is way to young.We'll keep you all in our prayers!!

 

[mamo-4-wdw]

We took your advise and took my son to St.Thomas hospital in Nashville. They found that he had rocky mountian spotted tick fever and a hole in his heart. They got him over the tick fever thing and then operated to fix his heart and he is now home and doing well. My family is so grateful for your advice and prayers. You will never know how much ! Our Jonathan is alive and almost well!!!! If we had listened to the first diagnosis he would have just laid there and died.
THANK YOU!

 

[Aunt Flancy]

I am so glad they found out what was wrong. My dad had Rocky Mountain Fever several years ago and it was very scary. They didn't really know what it what it was until after he was home from the hospital. I also have a son with heart defects so I now that is scary too. Prayers for a smooth recovery.

 

[rangermom]

Glad to hear the second opinion was more positive. I will be keeping him in my prayers.

 

[mommasita]

Thank Goodness you took him for another opinion..

I can not even begin to imagine what the family has been through. Praying for you all

 

[annie1995]

That is wonderful news about your son!!! Continued good thoughts and prayers for him

 

[safetymom]

Thanks for sharing the good news.