News of Jack

[Sangye]

Good call, Jack. Doxycycline can be rough on the body. I hope you'll still get a sputum sample just in case. Cultures take a few days to grow, and we've got the weekend coming up....

[renidrag]

I'm glad you will be able to go to the garden. That is where my peaceful place was. Although I can't get down and dirty like I used to, I built tables and potted all my veggies and flowers so I could tend to them without bending or kneeling. Good luck with feeling better Jack.
Dale

[Jack]

Feeling a lot better now that I've stopped the antibiotics.
This seems to be a lesson that I keep learning over again - It is easy to overmedicate and it is easy for the side effects of new medication to be worse than the original problem! Don't just plough on blindly if it happens, stop and think what might be going wrong!

Sputum sample is on its way. ;)

[Sangye]

I'm happy to hear all of that, Jack. Very good advice to heed. :thumbsup:

[Jack]

Ramps delivered for back door step - totally unsuitable! :mad1:
Like anything else involving a government department, this could take a few attempts before getting it right. :rolleyes1:

[Hammy8241]

Jack, Did they not come round, discuss with you what you wanted and measure up for the ramp or am I just being silly?


Now Hammy! Hot cross buns?!! Seriously now!!! They are just a tad out of season.

No joke Phil - On sale over here all year round, yum!

[DEE]

Hammy its you been silly BUT your right Jack could get some hot cross buns to eat in the garden ,saw then in two different stores today :) We could all go for a garden party in Jacks garden when they get his ramp sorted !!! DEEx

[pwc51]

A party - I can't wait!!!!

[Jack]

Yes, it was all measured up and discussed, but there seems to be a communication problem when you are in a chair and they provide what they think is best for you. Somehow, I think that being an Engineer all my life puts me in a better position to specify a solution instead of the one chosen by the young girl who came out to the house, but what do I know? :rolleyes1:

[Jack]

I did not have Wegener's in 1985, just big side burns! :wink1:

http://i25.photobucket.com/albums/c56/1955diesel/JohnSummer1985-1.jpg

[Sangye]

LOL! I think I saw that movie once: The Sideburns That Ate New York. :biggrin1:

[pberggren1]

We need more pics Jack!

[marta]

Jack, didn't think it would be possible to look cooler than Leonard, but there you go, you've proven me wrong.
I love it!!!!

[Jack]

It does not seem very long ago that I refused to have anything to do with wheelchairs and when I rented a mobility scooter for a day out, I kept it secret! These days are long past.

I plan on visiting my sister on Saturday where both of my sisters and my brothers-in-law will be taking part in a steam rally and country fair. They have all recently acquired vintage, powered cycles which the lads have rebuilt and they will be part of a parade! Anyway, in order to be able to get around, I decided that I needed to rent a mobility scooter, but insurance problems have pretty well stopped these being available. So I have bought myself a second hand one! I rode it around the block yesterday evening and it was great fun! It is going to be a bit of a struggle for the girls to dismantle it and get it in the car though. :rolleyes1:

[DEE]

WATCH OUT JACK'S ABOUT. :) Great news Jack ,glad you got things sorted . Hope you have a wonderful time . DEEx

[Sangye]

That's terrific, Jack. I think that'll make a big difference for you getting out and enjoying the world. :thumbsup:

[Jack]

Just been out on another little trip - my wife says that I am a lot brighter in myself when I get out and do things. Driving the car around is fine for longer journeys, but I would never just take it round the block for some fresh air and a change of scenery.

[Sangye]

Aww, that makes me so happy to hear, Jack. :smile1:

[pberggren1]

That's awesome news Jack. I hope this second hand one you got will last you a long time.

[vdub]

It sounds like things have been going better for you, Jack.... I'm happy for the good news.... And..... More pics! Love the big sideburns!

[vdub]

It sounds like things have been going better for you, Jack.... I'm happy for the good news.... And..... More pics! Love the big sideburns!

[pberggren1]

I can fix this.

[vdub]

Ok, so this is sort of a bump. I know there are 78 pages on this thread, but I'm not getting past 77, so I'm see if a new msg will tip the scale....


On edit....

Yeap, it kicked on over. Odd....

[pberggren1]

Same thing for me vdub, that is why I posted: I can fix this.

[vdub]

Great minds thinking alike.... :-)

[marta]

I'm so happy to hear that Jack. I can see you modifying the thing and making it look like a race car knowing your skillset. Enjoy the fresh air and sunshine. Funny how Wegs gives us a whole new appreciation of the very little things we all use to take for granted. My heart sings when I hear the kids screaming in the schoolyard a few blocks away - wouldn't have had the same reaction pre-hearing loss. There are so many more examples, but I wont hijack the thread again. Enjoy every moment.

[vdub]

My heart sings when I hear the kids screaming in the schoolyard a few blocks away
I know what you mean, Marta. I see backpackers getting ready for hike here in Idaho and think to myself "I wonder if they realize how very lucky they are?" I used to be one of the hikers/runners/etc and took it all for granted......

[pwc51]

...... I used to be one of the hikers/runners/etc and took it all for granted......

Aah vdub - I too used to climb mountains, cycle the hills and trek in Greenland - it is a bit of a dream now although I can still walk round my area reasonably well.

[vdub]

Yeap, I too am now a walker and can manage quite well at that. I will be putting it to the test this fall when we are going to hike The Narrows (http://www.zionnational-park.com/zion-narrows.htm) in Zion Nat'l Park. After that, we go to Bryce Nat'l Park and hike the Fairyland Loop (http://www.nps.gov/brca/planyourvisit/fairyland.htm) (not all that strenuous). I always wanted to hike from the south rim of the Grand Canyon to the north rim -- I'm afraid that is out of the question at the moment.

[Jack]

Visit to the Steam Fair went really well and even the weather was mainly good. The scooter performed perfectly so it gets a tick for being a good 2nd hand buy. The only problem is that it is quite an early design so not as user friendly as later models when it comes to dismantling and getting it into the car. Luckily, there were plenty of people willing to lend a hand so it was not a difficult situation.

The District Nurse came to see me and has given me an inflatable seat cushion and also a mattress topper. They seem to be quite flimsy and I was not expecting much from them, but they seem to work a treat and are very comfortable. They also cost the NHS a fortune so they are probably tougher than they appear. I guess that the extreme flexibility contributes to the spread of pressure.

[DEE]

Hi Jack ,I was talking to Fran and she has had to put off the mobility scooter race at Robin Hoods Bay this year ,so keep practicing sp ready for next year DEEx

[vdub]

Sounds like you are finally getting around pretty well. I hope it continues....

[Fran]

So pleased you had a good day out at the Steam Rally Jack and the scooter was successful http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (http://javascript%3Cb%3E%3C/b%3E://) My son and family were also at a similar kind of show yesterday near Rugby which they said was very enjoyable. Glad the nurse came up with some useful aids for your comfort - good old NHS ! Have they fixed you up with a decent ramp yet - if not, draw up the plans and submit them yourself !!! Here's to further excursions...... http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (http://javascript%3Cb%3E%3C/b%3E://)

Fran

[pberggren1]

Hey Jack. Good to hear that you like the scooter.

Now getting back to the Steam Fair. Tell us more about it. I love steam powered locomotives. I actually like anything to do with trains. Have you ever travelled on the Eurostar? I would love to travel that fast. I think it goes around 300km/hr? It is neat that you can take it right from London to Paris now. I would like to try the Maglev that is in Germany and Shanghai.

[Jack]

Oh crap! Washing machine has broken down and it has just cost me £65 to discover that it is beyond economic repair. I was trying to cut down on the spending this month too. :(

[vdub]

£65? Wow, that is like a $100 USD! Pretty expensive service call.... We bought a new washer and dryer a couple months ago and got the new whizbang water saver kind with 50 led lights on the dash. Looks like some startrek stage prop. It does a good enough job, but certainly is different than the old kind. In some ways I regret not getting the old kind. Consumer reports says the life-expectancy of the new ones is about 7 years, whereas if we had bought the old technology, the life-expectancy was about 17 years and about half the price.

[Jack]

Yes, it is way more than you would usually expect to pay, but it was a bit of a gamble on my part and I went for what should have been a fixed price repair. There was only one way that the deal could go wrong and that was if it turned out to be beyond economic repair, which it was! Cost of parts alone would have been around £250 against a replacement machine £350.

Machines seem to only last about 5 or 6 years unless you pay big money. In Europe they tend to be treated as throw away items and they are not usually worth repair.

[drz]

Yes, it is way more than you would usually expect to pay, but it was a bit of a gamble on my part and I went for what should have been a fixed price repair. There was only one way that the deal could go wrong and that was if it turned out to be beyond economic repair, which it was! Cost of parts alone would have been around £250 against a replacement machine £350.

Machines seem to only last about 5 or 6 years unless you pay big money. In Europe they tend to be treated as throw away items and they are not usually worth repair.

Same life expectancy here for appliances and dealers tell you they are basically throw away items but they recommend the extended warranty due to high failure rates on them. They replaced everything except the shell on our washing machine after four months. The old one lasted 20 some years but they had no parts to repair it any more.

[Jack]

Lung infection? update:

Sputum test results are back and it appears that I have nasty little bug living in my lungs. The recommended antibiotic for it is Ciprofloxacin which I started taking today, but unfortunately I seem to have every contra indication towards taking it. I guess I'll just have to be extra cautious for the next week or so and keep my eye open for anything that might be going wrong.

I know that I could ask if there is an alternative available, but I just want to start the course and see if it works for me. My cough and mucus production is just getting worse all the time as things stand and I am having difficulties due to shortness of breath.

I get to see the "Community Matron" tomorrow. Not sure how this system works, but apparently she is supposed to do all she can to help me obtain any services or help that I may need to live safely at home. This referral was made when I asked about using oxygen at home as she is the person who assesses your requirement and if it would be of benefit. Does anyone else have oxygen available? Is it any good?

[Sangye]

I'm so glad they did a sputum sample. What contraindications do you have for Cipro? It can be a rough antibiotic under the best of circumstances.

I was on oxygen for 19 months after dx. It's an unbelievable inconvenience--hard to imagine if you've never been on it-- but it kept me alive. They'll only put you on it if your oxygen saturation is too low.

[pberggren1]

I am sorry to hear this Jack. Have they done AFB testing on your sputum samples to see what bacteria it is in your lungs? I am curioius to see which bacteria it is.

[Jack]

My doc told me what it was, but I didn't bother to remember.

Contra-indications:
The one that worries me is the danger of tendon problems with increased risk of tears. I already have that problem thanks!
There are also warnings about it interacting with Cyclosporin (I wonder if it applies to Myfortic too?), Prednisolone and Warfarin. Then there are the usual mentions of renal problems and diarrhoea.

[delorisdoe]

I was on cipro for 15 days when I was hospitalized last month. It is such a strong drug. When they switched me from the iv cipro to the pill they had to keep an eye on my temperature for 12 hours because aparently it can cause fevers and they can be quited dangerous. yuck. cipro

[pberggren1]

If anyone ever has to go on Amikacin just remember it is very nephrotoxic and ototoxic. Not that I had a choice in taking it. My doc told me I had two choices: death or deafness.

[vdub]

Dang, Jack, if you didn't have bad luck, you wouldn't have any at all. Isn't cipro that stuff that everyone wanted for the anthrax scare?

[elephant]

Levaquin, Cipro, and Avelox are all hardcore antibiotics. They are a lifesaver, if no options are available. It can cause your heart rate to go up. Hope it works out for you Jack. Get better real soon.

[delorisdoe]

Dang, Jack, if you didn't have bad luck, you wouldn't have any at all. Isn't cipro that stuff that everyone wanted for the anthrax scare?

Yes cipro is also for anthrax

[Sangye]

Jack, regarding warfarin just make sure you know if cipro increases or decreases the activity. You might need to get your INR checked more than once a week to be on the safe side.

Yes, the tendon thing is a major problem. Cipro is in the class of antibiotics that I avoid. I hope it gets ride of your infection quickly and you stay safe.

[DEE]

Sorry to hear things are not so good Jack. Please take care of yourself .DEEx

[renidrag]

Sorry to hear of your new problem Jack, good luck with the drug and hope you feel better. When I was diagnosed they tested me for aspergillis (?) bacteria in my lungs. It was not there, maybe that is what you have?
Dale

[Jack]

Nurse just came out to give me an INR check and its gone through the roof! Computer says to half the dose.

Had a very bad day so far. Struggling to breath and then a dose of constipation followed by diarrhoea just to top things off! I sat there thinking of how many people die on the toilet and tried to relax! A nurse is coming to visit this afternoon to talk about oxygen therapy amongst other things, but in the meantime I am improving so that is good.

[Sangye]

Gosh Jack, I hope you're better by now. I'm wondering if you'll have to be admitted so they can keep an eye on things better.

[Jack]

I have just become part of a Virtual Hospital Ward!

A service I have never heard of before, it has its own nurses, doctors etc. who all liaise with each other, but visit you at home rather than in a hospital bed. The nurse I saw today is getting me assessed for using oxygen, has written a prescription for pressure sore dressings and will check on the progress of my stair lift and ramp requests. She also examined me and had a long chat about how I was coping. Sounds like useful stuff. I just need the new antibiotics to start working now!

[DEE]

So glad you get to stay at home and get the treatment you need Jack . Fingers crossed those anti b start to work very soon DEE x

[Chris G]

"Virtual Hospital Ward"......that sounds kind of wonderful (if you have to be sick). I hope things are under control for you quickly.

[Brooke]

Aww, hope you get better soon Jack!

[Sangye]

That sounds very cool, Jack. I think you're the first Virtual Patient in our group!

[julia]

Maybe someday we can have virtual diseases

[Sangye]

Now you're onto something, Julia! :thumbsup::laugh:

[vdub]

I have just become part of a Virtual Hospital Ward
A virtual hospital room sounds great and lots of money saved. Good deal.... Let us know how it works out.

[Jack]

:w00t:

New antibiotics are working a treat. Big reduction in coughing and mucus production today!

[DEE]

GREAT NEWS !!!! hope you have a better day DEE x

[Psyborg]

That sounds great, I hope you continue to improve. Antibiotics are amazing sometimes :)

[Sangye]

:w00t:

New antibiotics are working a treat. Big reduction in coughing and mucus production today!
YAY!!! That made my day, Jack. :thumbsup::w00t:

[pberggren1]

Absolutely Fabulous news Jack!!!!

[vdub]

Feeling good has a pretty positive effect on everything doesn't it? Hope it continues...

[elephant]

Glad to hear that Jack, breathing is a good thing. You are progressing! Yahoo!

[marta]

Yeeehaaa! Awesome to hear Jack. It's the little things that make us Weggies happy.... breathing, moving, walking.... the little things.

[renidrag]

Great news Jack, now you can get back to the ramp.
Dale

[Brooke]

Awesome Jack! :thumbsup:

[Jack]

Project Ramp gets marked as a Fail at the moment. :sad:

I'm sure everyone here from the USA will roll around laughing, but I failed the NHS financial assessment for help with the ramp and stair lift (not poor enough) and now I feel hard done by! Looks like I'll have to spend some more of the children's inheritance. :wink1:

[DEE]

In the same boat , worked since 15yr old same as hubby . we fall in the same trap for help with things to ! DEE x

[drz]

Project Ramp gets marked as a Fail at the moment. :sad:

I'm sure everyone here from the USA will roll around laughing, but I failed the NHS financial assessment for help with the ramp and stair lift (not poor enough) and now I feel hard done by! Looks like I'll have to spend some more of the children's inheritance. :wink1:

Many of our programs in USA also have income guidelines which I never manage to meet so I always get to pay full price. I suspect sometimes they ask for my income before they set the guidelines. Our only consolation is being able to deduct these extra large expenditures as deductions on our high taxes. But as long as our grandchildren don't mind us spending their inheritance i guess we will get by for awhile, right?

[vdub]

I have no idea what kind of income guidelines we might have in the US. I'm on the other side of the fence where I get to pay a lot of taxes.... :-)

[Jack]

Bought a stair lift today - why wait?

Since it is a major factor in my mobility needs now and in the future I decided on the one that I really wanted rather than making do with something that might be just adequate, but boy did the price hurt! There are no prices available on line because if you have anything other than straight stairs it has to be made individually to fit so it came as a bit of a shock when it was nearly double my estimate.

It is being fitted on the 10th and I now feel quite excited at the idea of being able to go up and down whenever I want instead of once a day. Project ramp next. I'm going to have to make it a budget model!

[Sangye]

That's fantastic, Jack! It'll make such a difference in your quality of life. :thumbsup::w00t:

[jola57]

Jack what a way to get to the top, enjoy those rides. I feell your pain, I must pay for all my meds, physio and life aids. At this rate I will spend all my retirement money before I retire:mellow:

[pberggren1]

Jack what a way to get to the top, enjoy those rides. I feell your pain, I must pay for all my meds, physio and life aids. At this rate I will spend all my retirement money before I retire:mellow:

I wouldn't retire then. lol

I think Jack's chair lift is like going to the top of a big drop on a roller coaster. Except with Jack's you can go down at a much slower pace.

[DEE]

[QUOTE=Jack;44783]Bought a stair lift today - why wait?

Since it is a major factor in my mobility needs now and in the future I decided on the one that I really wanted rather than making do with something that might be just adequate, but boy did the price hurt!
Jack did they say anything about not paying the VAT,they told us about it when we were doing the bathroom .They would probably sp be registered . DEE x

[Jack]

Yes, I found out about the vat exemption when I had a new shower fitted and have used it a couple of times since. I have also just discovered that I should now get totally free prescriptions because I need help getting out of the house. I hope this one comes through because it has always bugged me that no matter how sick I was I did not fall into one of the exemption categories.

[Jack]

My sister has just given me a dilemma over my next stay with her while wife and children go off on holiday in a couple of weeks time.

Because I have not been too well lately and am still fighting this chest infection (new sample going in for analysis tomorrow) going up the stairs has become a major problem and something I can only really manage once a day. The trouble is that my sister's house does not have a wash room downstairs. She says that this will not be a problem and she will sort something out (commode, urine bottles, even a bed down stairs if necessary) she is able to cope with almost anything it seems and with her nursing background, I don't feel as embarrassed as I might do otherwise, but obviously I feel guilty about imposing on her in this condition.

However, she has now made another offer - to come to my house and look after me here! From my point of view this would be ideal, especially with the new stair lift, but I really could not bring myself to impose on her to that extent. Perhaps the answer might be to split the visiting and do a bit of each depending on how well I feel.

Just using this post to help sort my thoughts out! ;)

[Sangye]

I'm sorry to hear your chest infection is still hanging on! I vote for letting her come to your house. You couldn't even bathe properly if you went to her house. No one like a stinky guest. :laugh: Let her help you, Jack.

[delorisdoe]

i would go with her new idea...i would NEVER offer up a new idea if it was not okay with me so...i think it is safe to assume she either would prefer it that way or she at least has no problem with the idea. Go for it.

[DEE]

I agree ,go for it Jack let her come to you. As you say life will be easier with the things you need around you . :smile1:

[pberggren1]

I would stay at your house Jack. It sounds like a way better arrangement for you.

[elephant]

Stay home Jack, your sister sounds wonderful. So glad you have great support.

[Jack]

You are all coming at this from the logical standpoint and I can't fault your opinions. However, I'm coming from my position of never having to ask for help with anything and feeling guilty about it when I do. I always have to return the favour! I have never been particularly close to my sister until recently because she is quite a bit older than me and then I moved away to a different town so it comes particularly hard.

I think I'm going to try for a compromise with her coming to stay with me for a few days and then both of us moving back to her place for the second half depending on how well I'm feeling at the time.

[Hammy8241]

Had you thought that she might want a break from her own surroundings anyway? You could be doing her the favour? The thought of all that shpping that the 'Bullring' (mall, for our overseas friends!) offers - could be heaven! I think that the 'compromise' is the best of both. Hope all the family enjoy their breaks (no, not bones please).

How's the 'Ski' ramp Jack? With the warm weather i trust you are enjoying the garden? I've just picked over 9lb of runners which just arrived over the past three days - shame you don't live closer.

[Sangye]

I hope you enjoy your time with your sister no matter where you spend it, Jack!

[vdub]

I'm coming from my position of never having to ask for help
I totally understand your position. I'm the same way. I'm not good at asking for help. If I can't do it myself, then it doesn't need to be done. Same with borrowing things. If I can't afford to buy it, then I don't need it. I'm still hanging on to that premise, but the day will come..... Agree with the rest. Go with the compromise if it's not too big of a hassle.

[Psyborg]

Don't let pride get in the way of spending time with family. I'm the same exact way mind you, but it's easier to say it to someone else :) Actually that is one thing that this disease has beaten into me, I'm not really in control of much of anything, might as well go with the flow :)

[pberggren1]

I so know where you are coming from Jack. Just ask your sister straight out how she feels about all this and where she wants to go?

[Jack]

If I continue to feel as crap as I did this morning I won't be going anywhere.

I started to really slide yesterday so got another prescription for Cipro since this seems to have been most effective for me. By the end of the day I had decided to sleep downstairs because I don't think I could have made it to bed. This morning I was so short of breath that I was considering ringing for a Paramedic with some Oxygen. However, I have now taken another Cipro then resorted to taking a big dose of Pred and now I'm not feeling so bad. Sputum has changed to a pale colour, pain has gone from lung and I can move around a little without gasping for air.

Had a good chat with the Matron on Friday and mentioned the depression thing. We discussed it then went through a bit of a questionnaire and came to the conclusion that I was not showing any signs of clinical depression other than being a bit weepy. We are going to monitor it, but I think this is the correct conclusion and I really don't want to be taking any more pills! I certainly do not have the sort of problems that a couple of friends with depression suffered from.

[Sangye]

Jack, I wonder if you need to do a round of IV antibiotics. They're much stronger.

[Jack]

Not posting much at the moment because I really have been feeling very rough! So glad that I have the stair lift because it is even quite an effort to move from one room to another at the moment. It all seems to be due to lung congestion, low oxygen, difficulty breathing even though I still don't think I have an infection - second sputum test came back all but negative so I'm continuing with the antibiotics just to be sure. Not sure where I go from here unless I get admitted to hospital and it's not a good time for that.

Visit to sister's is off and she is now coming here to stay instead. I just could not cope with it at the moment and if I'm at home, I can access the facilities I know should the need arise.

Feeling a bit sorry for myself at the moment, I've had enough of this bad patch and wish I could see a bit of improvement.

[Sangye]

Jack, I'm so sorry you're still unwell. I'm wondering if you need to get a bronchoscopy done to get a good sample of what's in your lungs. What does your Wegs doc say about all this?

I'm glad your sister is coming to your house. I wish you were strong enough to travel, but at least you can enjoy each other's company.

[DEE]

Jack,
Sorry things are not good at the moment, Glad your staying in your own bed !. please take care of you .DEE :hug1::hug1:

[pberggren1]

Jack, are they doing AFBs on your sputum samples? This is a must and most GPs do not order this.

[Jack]

Honestly, you could not make it up and be believed!

It seems that my hunch that all my recent problems might be heart related and not due to any infection were correct and the ECG that I had yesterday shows Atrial Fibrilation. I've just done a bit of reading on the subject and I seem to fit the description to a T!

Doctor wants to admit me today, but the family are literally just leaving the house on their holiday so I'm going to have a chat with him about delaying it for a week. My sister will look after me and won't let anything bad happen.

And another thing..............
I have about half a dozen little lumps under my skin, less than the size of a pea and not inflamed or coloured in any way. One of these came to the surface yesterday so I dug it out and it was like a piece of gravel. I'm thinking that it may have been calcium. What's going on here?

[BrianR]

Honestly, you could not make it up and be believed!

It seems that my hunch that all my recent problems might be heart related and not due to any infection were correct and the ECG that I had yesterday shows Atrial Fibrilation. I've just done a bit of reading on the subject and I seem to fit the description to a T!

Doctor wants to admit me today, but the family are literally just leaving the house on their holiday so I'm going to have a chat with him about delaying it for a week. My sister will look after me and won't let anything bad happen.

And another thing..............
I have about half a dozen little lumps under my skin, less than the size of a pea and not inflamed or coloured in any way. One of these came to the surface yesterday so I dug it out and it was like a piece of gravel. I'm thinking that it may have been calcium. What's going on here?

No one can ever accuse you of being uninteresting Jack! So...what does this mean? AF seems innocuous enough if treated and not too severe so I am sure we are all interested in hearing your overall prognosis. Perhaps with treatment much of the nasty stuff you have been experiencing as of late will diminish?? More energy, less chest pain? Please let us know.

As for the lumps coming to the surface that you confessed to "digging out", my theory is little itty bitty alien life forms all about to form little itty bitty wings and fly you off to some far away planet for further testing.

Do keep us informed as you are near and dear and...INTERESTING!

[Sangye]

Jack, please be careful about waiting to go in the hospital. All that fluid building up in your lungs can easily get infected. I'm worried about you but glad your sister is a nurse.

I think this might explain Calcium Deposits Under the Skin (http://www.sclerodermatt.org/community/291) It doesn't list Wegs but we all know that Wegs dog is capable of anything.

[drz]

Jack, please be careful about waiting to go in the hospital. All that fluid building up in your lungs can easily get infected. I'm worried about you but glad your sister is a nurse.

I think this might explain Calcium Deposits Under the Skin (http://www.sclerodermatt.org/community/291) It doesn't list Wegs but we all know that Wegs dog is capable of anything.

The symptoms they list under the diseases that can cause this sound all too familiar to us so it seems very likely that GPA can do it too. doesn't it. GPA.... the gift that keeps on giving!

[DEE]

Jack,
Thinking of you , please take care . Glad you have your sister with you too .DEE x :hug1::hug1:

[Jack]

Thanks for all the messages of support, I'm sure you will understand if I don't reply just at the moment.
Feeling rough all day every day at the moment so may have to consider getting myself admitted a little earlier than I had hoped.

[Psyborg]

Jack, I hope you are able to get in earlier if you need to.

[mishb]

Take care of number one Jack, even if that means going in earlier.

I hope you start to feel better real soon ....or even sooner :unsure:

[Chris G]

Please take care of yourself Jack!:hug2:

[elephant]

Hey Jack, glad you are getting your heart check out soon. The beta blocker that your on Atenenol should help, slow the heart. I have little and medium size bumps, some on my back, hand and arms...the dermatologist said it was cysts. He will dig them out for me when I am ready.:w00t:

[Brooke]

Get well soon Jack! :)

[Dumpy]

Jack we all wish you well !:thumbup:

[marta]

Echoing everyone on here but especially Michelle. Take care of number one Jack. Thinking of you and sending you those vibes that I felt coming my way from all of you when I needed them. Get strong and feel better soon .... now.... yesterday.....(wishful thinking) :hug1:

[vdub]

Keep up posted! Get well.... You worry us.....

[Jack]

I'll come straight to the point in my usual manner -

It seems that the reason for my recent slide in health is because I have Lung Cancer.
Not much they can do about it I'm afraid so that's the end of the story.

Sorry if I don't post or return PMs

Wishing you all the best,
Jack.

[mishb]

I'm sorry Jack. Thats not good news at all. :crying:

Know that everyone is here for you and our thoughts, prayers and best of wishes are being sent your way.

Take care

[renidrag]

What strength I have I send to you my friend.
With all due respect,
Dale

[Widthofacircle]

Extremely sorry to hear that Jack
Brendan

[Hammy8241]

Always in my thoughts Jack.

[BrianR]

Thinking of you Jack. I'm lost for words.

[Sangye]

OMG Jack, no, no... this has me in tears. My dear friend I can't think of losing you.

I'm gonna PM and you reply if and when you can. Much love and many prayers to you.

[drz]

I'm sorry Jack. Thats not good news at all. :crying:

Know that everyone is here for you and our thoughts, prayers and best of wishes are being sent your way.

Take care

I can't say it any better. It is devastating news.

Is there any family member that can post some updates about how you are doing since we will all be wondering and worrying about you?

[marta]

Jack, this is horrible news. I have so much in my mind but can't articulate any of it coherently. You're an amazing man who has touched me deeply and I am sending you everything I have. Lots and lots of love.

[Psyborg]

Jack, I'm so sorry to hear this. Will keep you in my prayers.

[pwc51]

Jack - such devastating news after all you have been through. Our thoughts are with you and your family.

Peter

[watersedge]

Jack,
So sorry to hear about your devastating news. Life is so cruel. Thinking of you and your family.

[pberggren1]

I'm so sorry to hear this Jack. You will continue to be in my prayers.

[janNaz]

Such devasting news to hear, Jack. I'm so sorry. My prayers are with you.

[Jack]

I'm still here! :wink1:

My previous post was a bit blunt so I'll tell you what I know, which is very little. But first of all, thanks to everyone who has written or posted for your kind words, they mean a lot to me.

I had a scan with dye to check out all the issues I was having with breathing and this showed a shadow on my lung, they were able to compare this with previous chest pictures of mine and decided that it was a tumour and it was growing. I am now under the care of the chest department and they will be doing further tests during the coming week. They then have a multi disciplinary meeting on Friday to decide the best course of action. I have had a chat with the doctor in charge of my care and he says that due to my condition and previous history there is probably no case for treatment. He also asked about resuscitation and I told him that I did not want it. I'm not sure if this is a drug side effect, something connected with Wegener's or just bad luck. Perhaps the tests will show although it makes little difference.

I have had years to come to terms with this situation and I'm OK with it. Not worried, distressed or frightened. All my business is in order to provide for the family, but I feel sad that I won't be able to teach my youngest daughter to drive. :sad:

I have no internet access at the hospital, but they have allowed me to come home yesterday and today, just sitting with the family and watching TV. If I get the chance, I'll post whenever I can

[drz]

Thanks for the update! It was nice to hear from you. Can some one else post updates for you when you are unable? thinking of you and your family and hoping for the best.

[Fran]

Dear Jack, After everything else.........now this ! Life is just not fair sometimes. You have come to mean a lot to everyone on here obviously, for your perseverance, courage and wisdom. I hope you get the very best care there is. Good wishes to you and your family. xx

Fran

[Brooke]

Jack, so very sad to hear this. My prayers go out to you. Please keep us updated if you can.

[delorisdoe]

I am very sorry to hear this. You were the first person to reply to me on this site when I joined. I think you told me to get a good doctor. :biggrin1: Thank you and take care

[Red]

Sorry to hear that jack think positive, i will pray and send positive thoughts your way.

[Sangye]

Thank you for the update, Jack! I'm glad you're doing okay emotionally even if your body won't play nice. :hug1:

[Chris G]

Oh Jack, I'm so sorry to hear this news. I'd been thinking about you the last few days, wondering how you are doing. I'm sending good thoughts your way.

[pberggren1]

I had no idea it was this serious Jack. I'm so sorry. I'm at a loss for words right now..........

[crackers]

this is crushing news jack.i'm so so sorry.

[RudiK]

I'm so sorry to hear about this latest setback, Jack. I hope and pray that somehow you will overcome this lung cancer and can continue on with a better life. Rudi K.

[JanW]

Jack: I am so very sorry to hear this news. You are in my thoughts and prayers.

[maria garcia]

Im so sorry ! Your wisdom has helped many. Have they done a biopsy? Are they sure its not a granuloma? I just can't believe.

[elephant]

Jack, I just got on and so sorry to hear the awful news! You have been so good to the new comers on this site and so knowledgeable and helped so many people. We are here for you too.

[RCOSSIO]

Wishing you the best from the SE corner of the USA, Jack. Good Luck

[Geoff]

Thanks Jack for everything you have given us in the past years, now please take all of our love, prayers and well wishes.

Thinking of you and your family. Good Luck my friend.

[Jack]

No time to go into detail - I'm only home for a few hours and I'm really not feeling too well today.

I am in a thorough state of confusion! Docs have had their multi-disciplinary meeting about my case and decided that they don't have enough information to confirm cancer and some details they have are far from typical. Is this bloody Wegener's again? I don't have any of the usual symptoms.

Anyway, in the meantime they are investigating TB even though they have two negative results from me so far! One thing for sure - something is wrong. Back off to the hospital now and its going to take all my effort.

[chrisTIn@]

Good luck Jack! I hope the doctors will soon figure out what's going on, and how it can be treated.
Stay strong, hope you will post here again soon!

[Sangye]

Wow Jack. That actually occurred to me the other day. Got you locked in my prayer highbeams. :smile1:

[marta]

Jack, I'm actually quite relieved to read this. The first day I read your diagnosis I thought they must be wrong because I have personally experienced getting that exact same wrong diagnosis, but didn't want to say anything because I'm famously irritating with my optimism. I have been thinking about you lots and threw in a wish to Pele on your behalf yesterday (we're having our first real holiday since this all began and are sitting in the theraputic warmth and smells of Hawaii.) I hope they figure out what the problem is and it turns out to be something simple to fix.... I know, there I go again. Super big hugs.

[DEE]

Hope they sort things for you soon ,thinking of you each and ever day . DEE x :hug1::hug1::hug1:

[pberggren1]

Oh Jack, I sure hope they get some real answers soon. I know for me they first thought it was TB because it looked like TB uner the microscope. But after doing the AFBs they found out it was not TB but Mycobacterium Abscessus. Are you being seen by Bacon or Savage at all?

[renidrag]

Thinking of you Jack and hope they come to a conclusion soon. I think we should keep this thread on the board for you to easily access.
Best to you and family,
Dale

[Brooke]

Hope you get some answers soon Jack. Are they going to do a biopsy? How can they tell it is cancer for sure, especially if you have had a shadow on your lung before and it was Wegeners?

[elephant]

Good luck Jack! Looking forward to some good news!

[RudiK]

All the best, Jack, I hope the cancer scare goes away and that it is a mis-diagnosis.

[DEE]

Hope things are looking better Jack DEE x

[Brooke]

I look for updates daily on you Jack, hope you are doing ok:)

[Sangye]

Me too. And me too.

[BrianR]

Everyday I too look for updates on Jack.

[mishb]

Me too :mellow:

Please tell us that everything is okay .... even if it's just for now (take it one day at a time)

[marta]

Me three. Thinking of you Jack. Wanna hear all is ok.

[Sangye]

No internet for the past 2 days... this is the first thread I checked. Love to you, Jack.

[DEE]

Always the one i check too. thinking of you Jack.

[Trudy]

The last entry I can find from Jack is 9/3, over a week ago. Does anyone have any news?

[Natalie]

thinking of you Jack
Hope to here from you soon x

[drz]

The last entry I can find from Jack is 9/3, over a week ago. Does anyone have any news?

I wonder if his family knows how many of us here are concerned with how he is doing.

[renidrag]

I'm sure they do, I think his daughter started this thread when he fell down the stairs. I hope we hear soon from him.

[renidrag]

Thinking of you Jack. Very much miss your input in our group.
Also, has anyone heard from vdub?
Dale

[Hammy8241]

What to say? Missing Jack. Any inside infomation?

[Brooke]

I was just thinking of Jack this morning. I have not heard or seen anything either :( Hope he is feeling ok.

[Sangye]

I miss Jack. :sad:

[DEE]

Me too , thought it was him when I saw the thread had been posted on . :frown:

[Jack]

Hey guys, it’s Beckie, Jack’s daughter with an update on how he is doing. Sorry for not updating you sooner but life has been pretty hectic!

After the doc’s swinging one way and then the other with the cancer diagnosis, they have finally, after a bronchoscopy, decided that dad does not have cancer after all and that his problems are actually being caused by a big infection trapped in a Wegener’s cavity in his lungs. Add to that a fungal infection too. These are both tricky conditions to treat, he is still on IV drugs and is now showing some response to the medication, although his physical state is weak and he is having trouble stabilising his breathing.

Since the bronchoscopy dad has had a sore throat and is now having troubling swallowing his meds so tomorrow he is going to have a feeding tube fitted, this should also have the added benefit of getting a bit more nourishment into him, hopefully helping him to get a bit stronger.

The plan then is that dad will spend a couple of weeks in a nearby hospice for a bit of rehabilitation to try and build up some strength before coming home. He is on the waiting list for a bed. Dad would also be able to have more IV antibiotics there too rather than spend yet more time in hospital. He will be sure to be back on line posting to you when he is at home sitting in his comfy chair, filling you in with all the detail I have missed out.

[pberggren1]

Thank you very much Beckie. I had a gut feeling it was a bad lung infection. Do you know if it is bacterial and if so what the name of the bacteria is? Do you know the name of the fungal infection as well?

[Sangye]

Thank you, Beckie!! Okay, so that is a big game-changer. He can fight infections. Hugs to you, Jack.

[elephant]

Thanks for the up date Beckie, looking forward to seeing his post again and getting better real soon.

[LisaMarie]

will be praying for you Jack and your family...thanks Beckie...tell him I will send him Crunchie bars if he gets better soon..

[Hammy8241]

So the ol' fellow is still 'kicking',:hug3: thats a relief.

Many thanks for the update Beckie

[DEE]

Thanks Beckie,so glad to hear how he is doing.Thinking of you all. hugs for Jack. :hug1:

[mishb]

So there you go Jack, can't get away from us that easily, and they finally got that feeding tube in to you as well. :thumbup:
Take care of yourself and we look forward to you posting as soon as you are feeling stronger.

Thank you so much Beckie for the update, I know it has made an entire Weggie population very happy. :biggrin1:

[renidrag]

Very Happy indeed. Thanks Beckie, look forward to hearing from Jack soon
Dale

[chrisTIn@]

Thanks indeed Becky!
What a relief to hear about your dad's condition, and to know he's diagnosed and taken good care of!
Hope he'll soon gain some strength, by means of that feeding tube,
and will be able to post here again as soon as possible, without becoming too tired.
Please give him my kind regards! :smile1:

[Brooke]

Yes, thank you so much for the update! We were all worried and wondering about Jack! I hope he recovers very quick and we can't wait to hear from him!

[freakyschizogirl]

What a relief it isn't cancer. Hugs to Jack and family and hope he's back to health and posting again soon x

[Geoff]

Good News!! Thanks for the update Becky and please pass on all our best wishes to your Dad.

[Jack]

Sorry to have to now tell you all this but Jack sadly died on Friday 23rd September 2011 at 11.05pm UK time. Things started to go badly wrong on Wednesday, he had been saying that his throat was very sore from about the previous Friday and we put this down to the bronchoscopy causing some swelling....this was checked out because he had started to choke and cough on some of his medications. It was discovered that when he swallowed food or drink some of it was going into his lungs,...we think this is why he was having lung infections that wouldn't clear up. The Docs put him nil by mouth and then on Thursday he was fitted with a feeding tube though his nose, dual purpose for supplying his meds and some nutrition.....sadly this seems to have been a step too far for his very frail state of health and he just found that he couldn't breathe or really talk.....his condition deteriorated and he died peacefully on the Friday evening with all of us with him.

We kept him updated with all of your replies and best wishes which pleased him greatly.

Jack absolutely loved this forum and all the many friends he has made through it gave him much valued support and companionship in their communal battle of living with Wegener's and all the other problems that come with that. Jack lived for 25 years with this disease, many of those years were not easy but he always coped with whatever came his way, never complained, looked after and loved us, his family, and did his best for us at all times.

Love to you all, Karen, Georgie and Beckie

[DEE]

To Karen ,Georgie and Beckie
I am so sorry for your loss, thank you for letting Jack become a special friend to me .He will be greatly missed by many .
Thinking of you all .Jacks Yorkshire friends .DEE and BARON x

[mishb]

I am so saddened to read this news.
Jack was an absolute blessing to everyone on this forum. He shared with us his experience with this disease of the past 25 years and
I am so sorry to hear that you have lost a wonderful husband, father and friend.

May he always rest in peace and be forever pain free.

[BrianR]

Karen, Georgie & Beckie.

I am deeply saddened by Jack's passing and am so very sorry for your loss. Jack offered so much help, encouragment and advice to Marta and me and we are going to miss him dearly.

Rest in peace Jack.

[freakyschizogirl]

Karen, Georgie and Beckie my heart and love goes out to you all and sending you strength to overcome such a tragedy.

Jack was such a wonderful man and his wisdom on the forum and his sense of humour endeared him to everyone.

I am truely shocked that he is gone and will miss him greatly. x

[renidrag]

Karen, Georgie and Beckie: Tears are still rolling down my cheeks. I will miss his wisdom, caring and humor. I valued his opinions greatly and will miss him very much. I feel blessed to have been allowed to know him even though I wish the circumstances were different. Hugs to all and know that he will not be forgotten here.
Dale

[Fran]

To Jack's family - Just to echo what everyone has written and to say how sorry I am for your loss. He was a very special person - and will be greatly missed, and never forgotten.

With love, Fran

[Rose]

So sorry to hear this news. My sincere condolences to Jack's family and friends.

Rose

[elephant]

I am so sorry for your loss. Jack was such a great friend to all of us. I am very sad about his loss.

[Sangye]

Jack was my good friend since I joined this group 3 years ago. I can't even begin to describe how deeply I feel his loss. I offer my condolences and prayers to his family whom he loved so dearly.

A year and a half ago Jack started the thread http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/691-your-thoughts-dying.html which inspired some wonderful dialogue. This morning I read the entire thread through again. The thread got sidetracked and recovered and sidetracked and recovered--typical of all our discussions! But towards the end of it Jack posted this:

"I don't follow an organised religion, but I am still fairly comfortable about dying. If there is nothing to follow after death, then what's the problem? You'll know nothing about it anyway. If you are wrong and there is a whole new existence, then it will be an adventure."

May he be enjoying the very best adventure right now and never know suffering again.

[marta]

Karen, Georgie and Beckie I'm so sorry for your loss. Today the world is a smaller, darker place because of the loss of such a wonderful, caring, compassionate, funny, wise man. He has touched me deeply and I'm sure many people around the globe can say the same thing. I'm so sad to hear this news. So terribly sad! But as Sangye said and in Jack's own words, who knows what he's going through right now, one thing is for sure - he's not suffering with all the nasty physical stuff that he has been for the last while. He will have a special place in my heart for the rest of my life. Much love to you and yours during this time.

[Geoff]

A light has gone out, and a cornerstone of this forum removed. My heart goes out to all of Jack's family, he was such a wonderful gift to all of us.

[alive and kicking]

Jack gave me such wonderful advice when i was diagnosed,a great support and a great man,and his passing is a deep felt loss in the world.My love and condolences his family,and to every one who has known him,been touched by him, and miss him now he's gone xx

[norcalian]

I am so sorry for your loss. I haven't been on this forum for long, but in my time here I have enjoyed and benefited from Jack's wisdom and wit. He is an exceptional individual. He is very much loved by many on this forum. My condolences and prayers go out to your family.

[Widthofacircle]

Very sorry to hear this sad news. Condolences to Jack, family. They will miss him dearly, as will we .
Brendan

[crackers]

a sad loss of a fine man.don't know what else to say.
john.

[Hammy8241]

Rest in peace Jack.

Forever in my thoughts,
A true gentelman and sage he will be greatly missed. His advice here will continue to benefit others for a long to to come.
Never forgotten.

[vdub]

Absolutely startled by this sad news. No longer seeing Jack's avatar on the forum won't seem right. I am so sorry for all of you. He certainly fought this disease for a long time.

[pberggren1]

I am so sorry.......I can't even think straight right now I am so distraught.......I will post something later when I can calm down and get my thoughts together.

[maria garcia]

I am in tears after reading this news. Im new to this forum and Jack had already touched my heart. He was so caring and funny and filled all of us in this forum with so much knowledge on this disease. He fought with courage to the end. I also feel he was not scarred of dying and had come to terms with it. Im going to go back and read his threads. I don't want to feel he is gone. He was a wonderful husband, father and friend. Thank you for being so kind and keeping us posted under such horrible circumstances. He was a real friend here and will be highly missed.

May he always rest in peace and be forever pain free.

[watersedge]

"Those we love don't go away,
They walk beside us everday,
Unseen, unheard but very near,
Still missed, still loved and very dear."

I am very sorry for you all to hear of Jack's passing. R.I.P.

[pwc51]

To Jack's family / team - my thoughts are with you all at this sad time. His words of wisdom will be sorely missed by all who use this forum. The information he imparted was a great help to me as I was getting to grips with WG about 2 years ago.
Peter

[Brooke]

My heart sank and tears filled my eyes as I read the post this morning. Just like the others, I am so very sorry for your loss. As you can see, Jack meant so much to all of us on this forum. He will be greatly missed. Hugs to all of you during this difficult time.

[drz]

We have lost a true gentleman. His kindness and thoughtfulness will be greatly missed. Even though I never had the privilege of meeting him and visiting with him in person, I feel I have lost a good friend.

Like Brooke said above: My heart sank and tears filled my eyes as I read the post this morning. Just like the others, I am so very sorry for your loss. As you can see, Jack meant so much to all of us on this forum. He will be greatly missed. Hugs to all of you during this difficult time.

[janNaz]

Such devastating news! I am truly sorry for your loss. Rest in peace Jack...you will forever be a part of us.

[Terri]

You will be greatly missed Jack, our friend, the one we could count on for advice no matter what the subject. My heart goes out to your family & friends. Such a great loss. Your presence we miss, the memories we treasure. You will go on in our hearts.

[Psyborg]

I don't even know what to say. Very unexpected and very sad loss not only for Jacks Family and friends but for everyone here as well. My thoughts and prayers go to Jack's family right now.

[RCOSSIO]

You meant so much to us Weggies....we will miss you Sir Jack. See you on the other side...brother!

[jola57]

Dear Jack's family, please lay a flower from all of us Weggies to honor a memory of a true friend. This forum will go on but will never be the same. We will always miss Jack, his wisdom, humour and advice. I will mourn my friend of 3 years. Rest in peace dear Jack.

[eileenv]

My sincere condolences to you all, i hope these messages posted will bring you some comfort to you all. Jack gave me some good advice when i first jioned this forum, he was a wise man and not one to mince his words which i appreciated. Jack i hope you are on a great adventure where there is no more suufering.

[delorisdoe]

Leonard Cohen - Hallelujah - YouTube (http://youtu.be/YrLk4vdY28Q)

[Sangye]

One of my favorite songs-- thank you, Leigh. Hoping Jack is singing along with each of us as we watch it.

[DEE]

I agree with Sangye ,thank you Leigh just what we needed.

[LisaMarie]

Please accept my deepest sympathy in the lose of your father and friend and husband...Jack was great and could always make me smile...I will miss him dearly....He was a wonderful man...sorry it took me soo long to respond ...just not dealing too well with this loss...it hits so close to home.....again my deepest sympathy...

[rif]

My deepest sympathies go out to all of Jacks family and friends at this very sad time.

[me2]

I am deeply grieved and saddened to hear of our loss of Jack. I know he touched the lives of many here , like myself and deeply loved his family. My thoughts and prayers go out to all who had the pleasure to know him. His was a unique and beautiful
presence and he will be greatly missed.

[Red]

I am so sad to here about your loss ,i will miss him to R.I.P.

[Natalie]

Condolences Karen,Georgie Beck and extended family . May he Rest in peace now
this is so sad :crying: he was such a fighter! You have left us all with a bit of your strength .xxoo
you will never be forgotten

[Dumpy]

Jack was always a comfort to anyone that came onto this site and was always willing to share. Thank You Jack for your friendship. R.I.P

[MCC]

Oh no, I am so sorry and sad. I haven't been on for a few weeks so I didn't know until now. Hugs and love to those who were close to Jack. x

[Beth Ann]

I am absolutely devastated. I did not know Jack long but after my Mom was diagnosed I found this forum and Jack gave my family and I so much hope! My heart goes out to his family and you should be so honored to have such and amazing man in your life!..rest peacefully Jack !

[Palmyra]

I have many kind memories of Jack's wisdom and words, that he selflessly shared on this forum. He was dignified and thoughtful, and served as a respected leader on this forum. I wish much comfort to his family, and to those of us who knew and loved him on this board. RIP

[Deb Roy]

I am so sorry to hear about Jack; I have not been on for a while but I can tell you that when my dad was first diagnosed in March Jack was one of many that gave me hope. I could feel the love and caring from his words, that I always felt better after hearing from him. He was an amazing man and will truly be missed.

[gurinbasra]

Going to miss Jack's humorous and comforting words. He had so much wisdom to share and for that he'll never be forgotten. I'm glad to have known him.

Gurinder

[Luce]

I was so sad to read Sangye's pm this morning informing me of the tragic passing of our friend Jack. I've not been on the forum in recent months so had no idea things had gotten complicated with Jack's health.
He was a great friend to me, often calming me down when I freaked out over a treatment or doctor's reaction. He was the voice of reason, but managed to do it with cheeky one-liners and poignant remarks that made me laugh and pull myself together.
He was inspirational in his outlook on life despite all the health problems WG had thrown up, ever practical and realistic - the most down to earth guy I had the privilege to know.
I will always remember the silly conversations about doing the dishes and where we keep our washing machines, and the connection we made between our pet rabbits and this rubbish illness which led to the birth of the demon pred bunny.
I wish I could say more but my emotions have got the better of me, so here's to Jack - a fine gentleman and a true friend.

Luce
XxX

[Chris G]

I'm so sad to hear this news about Jack. My condolences go to his family, and all those here, who considered him a friend. He made a difference in the lives of so many people.

[JanW]

My condolences to Jack's family. He will be sorely missed.

[Hammy8241]

Side Note.

Just looking at Jacks profile........ the news of his death came on the anniversary of him joining the forum in 2008. Only aged 56?

[Lightwarrior]

Karen, Georgie and Beckie,
I am so sorry for your loss, he always did his best for us at all times. I remember how hopeless I felt when I was first diagnosed and his information and wit helped me more than he could ever know. I am happy to hear that his death was peaceful and that all of you were with him. I hope that you can feel not only our sadness, but the light and love we send your way. If you ever feel like it, drop in from time to time to say hi.

[ArlaMo]

My life has kept me away from the forum a lot lately (thank you to Sangye for letting me know) but I will always think of Jack fondly. He fought the good fight and was always so kind and such a gentleman. My prayers and thoughts are with his family, Karen, Georgie and Beckie. May you have peace in this difficult time.

[Sangye]

You're welcome, ArlaMo. Dee went through the list of members and I PM'ed a few people we knew would want to hear the news. She did the hard part!

[drz]

Side Note.

Just looking at Jacks profile........ the news of his death came on the anniversary of him joining the forum in 2008. Only aged 56?

Does anyone have access to an obituary from his local paper that they could email us in a private message or to our private email account? I hope they did him justice in his death notice.

[pberggren1]

Does anyone have access to an obituary from his local paper that they could email us in a private message or to our private email account? I hope they did him justice in his death notice.

This is a good idea drz. Then his obit can be posted on here.

[Hammy8241]

Does anyone have access to an obituary from his local paper that they could email us in a private message or to our private email account? I hope they did him justice in his death notice.

I am watching but not seen anything yet. However, there are several newspapers in the area and not all put the obits online so I may miss it. They are not normally put in until the funeral arangments have been made and these can take a little while to arange. In the UK most Obits are reserved and normally just let people know of the death, the funeral arrangments and wether flowers or charitable donations are acceptable. Also, not everone does one.

[pberggren1]

We should ask his family for the obit.

[Hammy8241]

We should ask his family for the obit.

IMO this is the families time to grieve and sort themselves out. Whilst I'm sure they will appreciate our posts about their Husband/Father/Brother, i suspect they may have more pressing things to do. If there is anything that they feel we need to know, i'm sure they will do so.

[chrisTIn@]

When I joined the forum on 10-20-2010, Jack was one of the first to respond to my posting.
I appreciated that very, very much.

Like many others said, he was a true gentleman.
He will be missed dearly.

Although I only knew him from his postings and his avatar, he seemed like a real friend to me,
and to many others, I know...

I'll never forget him.

[Cindy]

Like many others said, he was a true gentleman.
He will be missed dearly.

Although I only knew him from his postings and his avatar, he seemed like a real friend to me,
and to many others, I know...

I haven't been on the board in a while and just found out about Jack.

I/we will miss his humor and psotings.

[Sangye]

IMO this is the families time to grieve and sort themselves out. Whilst I'm sure they will appreciate our posts about their Husband/Father/Brother, i suspect they may have more pressing things to do. If there is anything that they feel we need to know, i'm sure they will do so.
I agree with that.

[misskay]

Haven't been on the forum in a while... life has been up/down, and busy. decided to pop in today only to read the sad news about Jack.

Jack, you were a gentleman and a mentor. You will be missed my friend.

[misskay]

Haven't been on the forum in a while... life has been up/down, and busy. decided to pop in today only to read the sad news about Jack.

Jack, you were a gentleman and a mentor. You will be missed my friend.

[gwenllian111]

God bless Jack. Words fail me.

You will never be forgotten XXX

[Tippon]

Haven't been on the forum for a while, so only just heard. It's sad news, Jack was a nice guy :(

[Terri]

Maybe it would be ok to make a donation to the Vasculitis Foundation in Jack's name ?
I don't know how others feel about that.

[Sangye]

That's a great idea, Terri. I bet he'd like that.

[drz]

Maybe it would be ok to make a donation to the Vasculitis Foundation in Jack's name ?
I don't know how others feel about that.

Good idea. Does anyone have address for family so they can get a notice of such donations? You can donate on line with credit card at this site: https://contribute.vasculitisfoundation.org/donate/info

Another one might be to sponsor one of Cindy's dogs and name it in honor of Jack. Maybe several could contribute to her in his name. I think it would be great to have a Jack in the race.

[Kathie28]

I haven't been here in a while and I cannot express in words how sad this makes me. I wish his family and all of his dear friends on here all the best. He will be truly missed!

[Sangye]

I love the idea of having a Jack in the race, drz!