Status
Not open for further replies.

caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
Hello Everyone,

Just to let you know I lost my husband to ALS this past Sunday at 8:40 P.M. Never have heard of a muscous plug blockage by anyone until the time of his death.

He did tell everyone he was having trouble breathing after his trach operation, in the hospital, and when he came home. This I am told is very common in ventilator patients to have this problem. Just wanted to share with everyone that this costs my husbands life due to no oxygen to his body; the muscous plug.

He was suctioned properly, in fact, I was told he was suchioned too much by me after he came home, by the home health nurse. I am saddened that no one mentioned to our family anything about the muscous plug blockage, until after the death of my husband. Our family realizes the ALS was present, but after 23 months of diagnosis, it feels that we were cheated a few years, had we known about this muscous plug. Just do not understand the medical field not informing patients more about risks in detail when a loved one is trying to prolong their life.

So little is being done for an ALS cure. We as a nation seem not to know anymore than we did when the first ALS patient died years ago. How many more lives are going to be taken before we find a cure.

My husband fought this horrible disease to the end, but the ALS thief won despite his strong will to live with his family.

I pray for a cure for this ALS. God Bless each of you for your strength and wisdom. I truly believe we sometimes do know more about this disease than our fellow doctors.

Love and Best Wishes,
Carolney
 
Carolney,
Please accept my sincere condolences to you and your family. I am so sorry.
I hope that whatever you have learned out of your experiences you can use to help others, thereby confirming that your husband did not die in vain. I truly believe that what we all experience will help others.
God bless you and your family and may He grant you overwhelming peace.
Nicki
 
Caroliney, I am sorry to hear of the loss of your husband. It sounds as though it came as quite a shock which must be really tough. I agree with what you said about a cure, there are so many diseases the medical community knows so little about. These huge drug companies make so much money off of medicines and if they truly cared for their customers would put a portion of the billions of dollars they make into research, sometimes the almighty dollar wins out which is sad. I will say a prayer for your family. Mya
 
Caroliney... I am so sorry to hear about the passing of your dear husband. God will give you the strength to carry on. This is a very cruel and terrible disease.

God Bless. Anne
 
Caroliney sorry to hear about your husband's passing. My condolences to you and family! May your husband rest in peace. I, too, lost my son, 15 months after diagnosed, 6 months ago. He started having a lot of trouble breathing at the end. My son passed at home. I don't know about als.........it is such a bad disease. May God bless you. Take care, and keep us posted.

Irma
 
So sorry for your loss Caroliney. My thoughts are with you and your family at this difficult time. I lost my brother in law yesterday as well to cancer. Some days it is really hard to stay positive.
AL
 
Al....I am sorry to hear about the passing of your brother in law....Life has many different challenges, more than we can handle at times.

Take care of yourself.
God Bless. Anne
 
Condolences on the loss of your husband. It's so sad to see folks losing their loved ones to this disease.
 
Al, sorry to hear about your brother in law. May he rest in peace. My condolences! God bless.

Irma
 
Caroliney,
I am so sorry for the loss of your husband. Even though we know our loved one can pass at any moment, we are never ready for it. Nothing prepares us for the pain and loss we feel. My thoughts and prayers are with you.
 
Caroliney, I am so incredibly sorry to read about your loss. My mom stopped breathing briefly on Thanksgiving morning due to the same problem, but I was able to get a little air into her before EMS arrived to take her to the hospital. Very scary in retrospect, and I also did not feel properly prepared for the mucus plug issue. The respiratory people who trained me had mentioned the possibility, but we didn't spend a lot of time on it. Now I am worried about her coming home, but I am going to ask for more training so that I will spot the signs of it in the future.

But back to you...you must be devastated after going through the training and feeling prepared for his homecoming, only to discover that this very serious possibility had not been properly addressed. My thoughts are with you, and I hope that you will not replay the experience in your mind too much. Your husband was lucky to have you, and we are all fortunate for you to warn us about the dangers of mucus plugs. I just wish that the lesson could be learned in a less painful manner.
 
My condolences

I am so sorry about your loss. This horrible disease runs in my family, I lost my mother and my sister plus 8 more....with 2 new DZS. It is very frustrating, it is like standing there and watching someone you love drown and not being able to do anything about it.

God bless you
 
Caroliney,

I'm so very sorry you lost your husband. I know you must be in shock since you thought he would be with you for a few more years.

Thank you for sharing during your time of loss so that others can be watchful and diligent.
 
So sorry to hear of your loss .

Steve
 
Caroliney,

I am so sorry for your loss. I have said the same thing as you. Years have gone by and there is nothing to give us hope. We go to the doctor's hoping that he will tell us there is a cure around the corner and we leave feeling lost and alone. It hurts so much and my heart goes out to you. My husband had a mucus plug also and it was awful the day it happened. We managed to get through it but did not know about it either. He was fine and then he could not get his breath, we knew nothing about this. Since then I have more training in what to do but at the time knew nothing. There is so much we do not know about the disease, for us we find out as we go along most of the time. I am so thankful for this forum though we all help each other. You are in our prayers.

hope.
 
Status
Not open for further replies.
Back
Top