My Dad

[watersedge]

Hi everyone, glad to be here, have been searching the web trying to find answers for so long and found this site. Unfortunately the answers i seek will not change the outcome as my dad passed away in March 2011 from w.g.
My dad suffered from sinusitis for years and years, all he ever got was antibiotics from the doctor, he wouldn't go to an e.n.t. as he said he'd heard all they do is flush out the sinuses and it comes back, we tried everything, herbal remedies, nasal irrigation machine, you name it, never dreaming that it would be linked to a disease which is so unknown.
Daddy had a mild stroke October 2010, after that coming up to Christmas his sodium levels were low, i brought him to the A&E once, his sodium was 129 but they said it wasn't low enough, it was only a worry below 125. In January 2011 he was very constipated and his ankles swelled up, he had bloods done and his sodium levels were now down to 116, he was kept in hospital for about 10 days, they put him on a fluid restriction and let him home, he was home for 1 week, in that week he deteriorated rapidly, we brought him down to the hospital again, he was so sick, they said his iron levels were low and gave him a blood transfusion but he had a massive nosebleed and they had to stop it. The kidney consultants became involved and within a week they diagnosed him with w.g through kidney biopsy, (he'd had acute kidney failure), they said there was no scar tissue and no long term damage done and he started dialysis, he was given steroids for 3 days intraveneously and put on cyclophosphamide, he developed pneumonia and went into icu for 8 days, when he came out of there he was given immunoglobin as he was very weak, he was a thin man to start off with but lost a lot of weight, his mood changed after starting the drugs, he had a feeding tube in, anything that could go wrong went wrong, he passed away from a massive stroke just over 6 weeks after being readmitted, i am devasted, i was a real daddy's girl and idolised him.
The consultant said that he had never seen anybody with w.g. having low sodium as a symptom, has anybody heard of it, i personally think that his kidneys were failing long before they are admitting, as from what i have read low sodium is a symptom of kidney failure. Also was his sinusitis the start of all this and we think the mild stroke he had was caused by this also.
Thank you all

[NicShaf]

watersedge,
I'm so sorry to hear about your father's passing. My thoughts and prayers are with you and your family.

[watersedge]

Thank you, it is very hard, i just hope that i am not upsetting anybody being here and talking about my dads passing as i know that you are all battling and living with this awful disease.

[NicShaf]

No, I don't think you're going to upset anyone. That's what we're all here for, to support eachother through this disease.

[Daggar]

Sorry to hear of your loss.

The low blood sodium would indicate kidney disorder... a result of WG so I'm not sure why it hasn't been seen before by the consultant?

Sounds like you may be right about the kidney issue beforehand.

[drz]

I had low sodium and almost lost my kidneys but aggressive treatment manage to save them and they eventually recovered to 50% function. I had several complications during treatment and spent last spring and summer in patient, but was lucky to not have a fatal stroke and that they found antibiotics to handle the infections and intubation and plasmaparesis seemed to work for me. Other wise my daughter could have written the same post you did. It makes me realize how lucky I am to still be on the green side of the grass. I feel sorry for your loss and hope you have many good memories to help you cope with the loss.

[Sangye]

Oh I'm so sorry to hear this. You are in my thoughts and prayers. I'm grateful that you shared your father's story, as it will no doubt save lives.

[Jack]

I'm glad you were able to tell your father's story and my heart goes out to you, but you will eventually come through this and build a new life without him. I'm sure he will never be forgotten.

My own story is very similar and could easily have ended the same way. I had sinus problems followed by lots of other complications and it was not until I lost my kidney function that I was diagnosed. It is easy to see what should have been done at the time with the benefit of hind sight, but this is a very rare disease and doctors are only human.

[watersedge]

There were two kidney consultants involved with daddy after he was admitted to hospital the second time, one diagnosed him and the other looked after his treatment, i have no doubt that they did everything they could for him, i suppose i will always wonder "what if". Would he have had a better chance to respond to treatment if he was diagnosed earlier when he was stronger, after he had the first mild stroke, when he was showing signs of low sodium repeatedly, the list is endless and it plays on my mind over and over. My husband says that i am searching for answers that will never bring him back, i cannot help it. It all happened so fast that i suppose i am just trying to understand why, understand the disease more and am probably still in a state of shock, denial, anger, blame and above all overwhelming sadness, he had only just turned 59. I suppose it is just the feeling of being helpless to him as you slowly start to realise that you are losing him and you cannot do anything, make him better, make it all go away, i feel like i am going crazy, that somewhere in my mind as silly as it sounds i feel like if i find out as much as i can, i can somehow go back and tell the doctors this is when it started, these were his first symptoms and that somehow we can go back and my dad will get a second chance.
Thank you all for your earlier comments, i realise only too well what you must be all going through including your families, it is so hard to see a loved one especially a child as i can only imagine fight this disease.

[Daggar]

What if? Trust me... it is very normal to feel all of the things you mention. I can only imagine how much more intense these feelings would of been had Holly passed!! All I can say is that by looking back and trying to figure out when it started and how it could of made a difference will drag you down even moreso.... the last thing your father would of wanted. I still struggle to stop myself from doing the same thing at times but I realize it doesn't change things and takes away from the energy needed in moving forward and dealing with the disease -- in your case the "memory" of your father. In time you'll realize that it is all part of the healing process. I wish you all the best!

[WeggieParent]

Watersedge - I am so sorry about your dad. I also understand your need to figure out where and when it started. I've done the same thing for my daughter. At some point I realized there were no answers. I will say a prayer for you & your family. I am so sorry for the loss of your father.

[elephant]

I am sorry for your loss, many of us suffered sinus problems first. WG is a vasculitis disease so he was more prone to have a stroke. It was probably multiple variables that caused the stroke. We are here for you!