Fatality in undiagnosed adult sufferer

[benson]

My husband recently passed away unexpectedly in his sleep. Cause of death immune difficiency pnumonia. After 12 weeks of pathology it has been discovered that he had rare mutation of cystic fibrosis in his pancreas. He had been unwell for 6 months prior to his death with doctors unable to explain his illness or provide any treatment. He lost over 20kgs and said he felt like he was being eaten from the inside out. Prior to this he had shown no signs of the illness which is a mystery how it remained dormant for 35 years. Although we now have a name for his illness I still have unanswered questions and was wondering if someone out there may be able to answer them for me. Had he been diagnosed earlier could he have been treated, how and what would his quality of life have been? The day he died he had been under hospital care but sent home over night. They took a chest x-ray which clearly showed the pnumonia but no one at the hospital checked it before they discharged him that day. If they had seen it could they have provided treatment and what? Did he have to die that day?
If anyone can answer these questions for me I would be most grateful as getting answers out of health system is a nightmare.

 

[stevehof]

I am so sorry you lost your husband. I wonder if your grief might be compounded by hearing the opinions you are asking for.

Did your husband have absolutely no upper respiratory symptoms during the last several years? Long lasting coughs after getting colds or flu type illnesses? Repeated or chronic sinus infections? Maybe he was so used to his deteriorating lung function that he didnt notice it himself? If he truly was symptom free until the last six months of his life it was probably not too unusual to have had the proper diagnosis missed. Unfortunately, many people with CF are still misdiagnosed with immune deficiency type illnesses. This is especially true of older people with CF who do not display symptoms until well into their adulthood.

If the hospital did not send him home with at least some good oral antibiotics for his pneumonia, I would think they missed an opportunity to at least prolong his life. My opinion is that six months of steadily deteriorating heath should have prompted his doctor to do some very aggressive diagnostic workups. Whether or not a proper diagnosis made six months ago would have added significantly to his lifespan is impossible to know. If he had been properly diagnosed several years ago, then he would have had a better chance for a longer life.

 

[benson]

Thank you for your information, my life is filled with some many what if's I am trying to put some of them to rest. One does not expect to wake up in the morning with their 35 year old husband lying dead beside them. His illness had taken a terrible toll on his body but he still worked and gave 110% right up to the day he died. Prior to getting sick 6 months ago he had no trouble what so ever, no lingering coughs, colds or the like. We have two small children who drive me to find the answers to their questions. He was our life, our universe and we are left with that nagging question shoud this have happened.
Anyway I thank you for your time.
Warmest Regards

 

[kybert]

any person cf or not would have had aggressive treatment for pneumonia. why they didnt treat your husband god knows. as steve said someone who has been sick for 6 months should of had extensive testing, and even if they couldnt find anything they would still get cf type treeatment for their symptoms. i strongly advise you to see a lawyer to sort this out.

 

[Diane]

I am so sorry for your loss, and how it all transpired. There probably arent any easy answers to your questions. If your husband would have been diagnosed with cf after being so sick it is difficult to say whether or not he would have survived with correct treatment, since everyone with cf is so different. What makes no sense to me is you say he was in the hospital and had an x-ray that showed pnumonia, i can not imagine why they provided no treatment at all ( even perfectly healthy people need aggressive treatment for pnumonia). Theres always the chance that even with treatment ,he may have died anyway. It my have been too late. I was always a firm believer that when its your time....its your time, no matter what you do to try to save yourself. Cf can be a hard disease and can take a heck of a toll on the body. To have had it all these years and not be treated, there may have been some irreversible damage done to his body. Only problem is, there is no way to know the what if's if it had been found earlier. I feel for you and your children and wish you the best for your future. If you need to vent my email is.......... ~ JINXNICK @ AOL.COM ~

 

[anonymous]

I am SO sorry to hear about your loss, but discusted at the same time. The hospital you went to obviously didnt know what they were doing. There is no reason why they needed to send your husband home without finding out he had pneumonia! Even if they did find out that he had it, it might have been too late anyway. Im still just wondering whyit would take 35 years to figure out what's wrong with a person too. The healthcare in this country sucks, I think. This happens to me all the time, and <u>Text</u>I have CF! I'll go to my doctor, when Im sick (coughing and breathing hard, and he'll say, "well just increase your prednizone" Then a week goes by, and Im in the ER, with the ER staff calling my doctor asking him if I should be admitted. And what do ya know, I get admitted for 2 weeks! Anyway, to answer your questions, he shouldn't have died beside you, but yes he probably would have eventually died. He was probably in deterierating health for a while. I hope your pain will heal, I can't imagine what your going through. Trust in God though to get through this.

 

[anonymous]

I don't mean to offend you in anyway, but is there any way he could have cyst...something else?
There are a couple of things that stand out to me. One is the fact that no symptoms whatsoever have existed until just the last 6 months. If he truly has CF, then he was blessed to not have lived his whole life plagued with multipule respiratory infections, some requiring IV antibiotics and hospitaizations, as this can be the case for MANY who have this disease. Although with pneumonia, like Kylie mentioned, it's tough on anyone, especially those w/ CF, so that would help to explain how it was so tough on him too.
One other thing is that his whole body would have CF, not just the pancrease as far as I know. And maybe you mentioned that, but that his pancrease was the part that the CF was most active in.
The other thing that he was blessed with are his/your children. I know a lot of males with CF struggle to conceive children, often requiring invitro type intervention.
As for your original concern. It definitely was in error for them to send a person w/ pneumonia home, CF or not! That was a huge snafu on their part. Had he been treated aggressively for pneomonia, then he definitely had a better chance of pulling through it than simply no treatment at all<img src="i/expressions/face-icon-small-disgusted.gif" border="0">
Please hang in there, this has got to be so very tough on you and the children. I wish there was more we could help you with.

 

[anonymous]

Beckyboo- just curious, have your Dr's divulged any more information about your husbands death since you started this thread? I knew you mentioned unanswered questions & thought maybe some of the responses gave you more questions to ask.

 

[anonymous]

Becky,
First, I'm sorry to hear of your loss, and I hope you are able to find the absolution you are looking for.
I know you mentioned he had a rare mutation, but it takes two mutations for someone to have CF. He would have had to receive one from his mother and one from his father. Have they confirmed CF? You may want to ask what these specific mutations are.
Jen

 

[anonymous]

Becky,

I am so sorry about the loss of your husband. On some levels I can relate to you as my husband (32 yrs old) recently passed away. Micheals' health had declined rapidly and we knew the end was coming. Even though his death was expected, his Drs contacted me a few weeks later encouraging me to call them or come into the office if I had any questions about his treatment at the time of death and overall. This was a relief to me as I guess you have questions, no matter how a death occurs. My point being keep asking, keep fighting. No, you may not find all the answers and for some things there are no answers, but at least you followed your gut.

I wish you the best.

 

[JohnnaMarie]

Benson:

I am sorry to hear about the unexpected death of your husband. That is crazy that they sent him home tho......... I hope that you can find some answers......

 

[JazzysMom]

I am so sorry to hear of your loss. I had a friend who died after months of being sick. She didnt have insurance so she kept going to the Emergency Room. She kept getting told it was pneumonia & given antibiotics. Finally she went to a different ER & the Dr. there said it doesnt sound right so they did a cat scan & diagnosed her with Lung Cancer. She passed away almost 5 months to the day of diagnosis after trying chemo & radiation & living in hell, missing her 3 year old daughter. Her cancer was very advanced & usually seen in elderly patients. She DID NOT have CF.

 

[anonymous]

To Beckyboo,

I am so sorry about your loss. Do you know what mutation your husband had? I made my mother get tested for CF after my daughter was diagnosed becuase my mother has all the symptoms. She even takes enzymes when she eats. From the time I was little, she always had problems with her digestive system. No one could tell her what was wrong. She was always sick. She had polups removed from her sinuses. She has terrilble allergies. Just two years ago she was hospitalized because of a blockage in her pancreas. She was tested. Apparently she has a mutation that has not been classified as CF. so she has been told she does not have CF and is not a carrier. Which to me is BS. She was just released from the hospital after a week becuase she got very ill, her electolytes were out of whack and had low levels of magnesium. Hmmmmm. I am scared to death she is going to get sick and die, all because she is not being treated properly.