Week 6 -he's home!!!

1. Dougal 30 July 2007 at 15:15PM
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   :D

   Yippee My husband is finally home with strict instructions from the hospital on how he leads his life for the present.

   I SPENT MOST OF LAST NIGHT AWAKE WHILE HE SLEPT WORRYING ABOUT HIS BREATHING!!!silly me.

   The trachaeotomy site seems clean with only a little bit of weeping,me not being used to nursing as such managed quite well on dressing it.

   Stairs are a big problem he went up with me in front and my much larger son directly behind him.He is managing to potter about but does run out of steam easily and at present is fast asleep on the settee.

   We are still concerned about the damage to his kidneys and will have to go

   for blood tests twice a week as his cretanin( ? not sure on spelling) levels are too high-normally 90 at 149 last blood test.

   It all seems gobbledegook to me but I know it needs to be watched.

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2. Tessa 30 July 2007 at 18:43PM

   Hi Dougal,

   What good news. I am so pleased he is home at last. You will feel a bit nervous and keep watching him for a few weeks, but as long as he doesn't overdo it things should settle into a routine. Well done on changing the dressing. Not easy when it is the first time. Does he have to climb the stairs because he needs a little exercise. If they are too much you might consider getting in a stair lift.

   It's nice to hear good news.

   Tessa

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3. Guest 25 September 2007 at 22:40PM

   Hiya,

   Just a quicky about creatinine. 146 is not too bad, your creatinine needs to be about 700 before you need dyalisis. I've had a kidney transplant and mine runs at 200 at the moment.My kidnays just died when I had legionaires so I know all about levels. Everyones creatinine levels increase with age and even if it stayed at this level he would be fine. If it starts creeping up then it will have to be looked at but there are loads of things they can do. diet changes are the first thing, I guess the doctors will have talked about all that though.

   Good luck

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4. Guest 3 October 2007 at 22:49PM

   Hi, I'm pleased to hear that your husband is home and on the way to recovery.

   My father was admitted to hospital on Friday 28 September and then diagnosed with Legionnaires on Monday when he was moved to the ITU. That night he was put into an induced coma and has been asleep since. At present his oxygen is around 80%, saturation is between 93-96%. Having researched this disease extensively on the web since Monday I’m no wiser as to how one actually reacts and recovers. I am particularly worried as he has type 2 diabetes. Does anyone know what complications this may cause?

   We think he may have contracted the disease in Poland from where he and I returned from on the 17th September. Since my father was diagnosed I have had to be tested and am awaiting results. I feel fine but I did have severe diarrhoea last week, but that could be from anything I suppose.

   Naturally I'm exceptionally worried about my dad and have spent a lot of time with him but am now having to return to work. Finally it's good to find others who have been through this. If I may I’d like to keep you informed and be kept informed of how your husband is during his recovery.

   Thanks,

   Jonathan F

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5. Dougal 4 October 2007 at 10:08AM

   Hi I hope your dad is recovering I know its such a worrying time for you and your family.We too had to be checked out when my husband got legionella whilst on a family trip to Corfu so its just procedure. I remember watching my husbands oxegen intake and it seemed to take ages before he was able to come off the oxegen and I found I watched every machine for any change and any little change was positive.Take heart because there is hope -my husband is pottering around getting ready to go to the gym this morning. He has swollen feet and ankles as his kidneys are not fully back to normal , our doctor has recomended a course at the gym and tablets which seems to help. So stay positive!!!!! the machines are there to help and it sounds like he is still relying on the oxegen quite a bit ,remember that the balance of him breathing on his own for 20% to 80% help will improve. Please keep us informed we are thinking of you and every time someone logs onto this site helps us all to build up a picture of how this illness progresses as there does'nt seem that there is any kind of help /support group out there.

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6. Guest 4 October 2007 at 23:09PM

   Hi, Thanks for your kind words. I know what you mean about a lack of support groups! I'm pleased I managed to stumble across this site, already it gives us a little glimmer of hope (not that we have let it diminish!!).

   It's good news that your husband is preparing to return to the gym, hopefully this will not only encourage you but him an awful lot too!

   The news on dad today, after a further x-ray, was it's not got any worse yet not got any better. I guess after these few days this is the best we can hope for. We were also told today that with a bit of luck they will begin to wake him up maybe Monday or Tuesday although his oxygen was still at 80% today. With regard to his diabetes they have stabilised his blood sugars to 5.6 (they were 18), this was good news.

   I've spoken to my family today and they all send their best to you and your family. We have a silly family motto that is \"we'll be laughing about this next year\" - hopefully we will be. Please keep me informed and again, if I may, I'd like to keep you informed of Dads progress, it's just so good to talk to someone who has been there.

   Thanks again.

   Jonathan

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7. Dougal 6 October 2007 at 20:00PM

   :D Excellent news about your dad I shall keep popping on in the hope you've got good news. My husband was put into an induced coma for three weeks and I know they kept gently bringing him round to check him and its all very scary!!! The first time they did it when I was actually there I went into complete melt down and the nurse told me to stop or I would distress him further and that although he was awake it was like in a dreamlike state.My sister and I could tell you so much about how we watched the monitors for every little sign of improvement -POSITIVE THOUGHTS !!!!Remember that for every degree it goes down the better ,one nurse we had was excellent and said to me Don't panic if it goes up and down its just his body fighting back!!! and ain't that the truth.Have the doctors told you much or the prognosis?? I know that after 12 days they did a traechea on my husband which was a major thing to us as a family as they were worried that my husband could'nt tolerate the operation and that though normally it is done on ward he was taken down to theatre BUT he's a fighter Thank GOD. Well all our positive thoughts are with you and yours . Keep us informed and KEEP YOUR CHIN UP.

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8. Guest 9 October 2008 at 22:56PM

   Back in 1999 I had this dreadful disease. After reading the posting in this forum though I think I had God on my side. I was admitted to the hospital 16 days after contracting this bug and was almost dead, had i waited I would not have survived. I was on high dose steroids for my stay in the hospital to help keep my airways open. I never had to be put on a respirator but i was givin a bipap machine to assist me in my breathing. I got to tired to breath and I guess I just didnt care if I did or not. The worst part of my recovery was coming off all the steroids that i was on. I gain 50 lbs and developed the cushings syndrom. I was scary looking. Being on over 2800 mg of steroids per day and tapering down to nothing took about a year and in the process i developed Avascular Necrosis in my left knee and had to have a replacement. I also developed sever depression that lasted till i almost took my life. Since then i was given meds to help with the depression and i got over the disire to know what happened to me as i was clueless. Today i am stuggleing with illness but it is sarcoidosis and i suspect it is from the steroids also. Anyhow good luck with this may God bless you and yours with health and joy. Be thankful for everything He has givin you.

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