News of Jack

[Jack]

It's always a worry isn't it? I had a minor nose bleed yesterday morning too, but nothing like the stuff I used to have when Wegener's was active. I'm keeping a look out for anything else unusual and have a clinic appointment for Friday so I can mention it then.

[Sangye]

Jack, I think it'd be good to ask your doc about physical therapy. While the ligaments are the main supports for the joints, muscle strength and balance help keep the joints in proper positions so that ligaments aren't stressed. Ligament laxity caused by pred plus muscle atrophy is a bad combination that leaves you vulnerable to easy injuries like this.

I know I'm a broken record, but I'm going to suggest a pool again. You've got to get some muscle strength and it's the safest way to do it. Because of your present state, I think it'd be best to have a PT help you with it.

Also, because of the complexity of your condition, it might be best to see a physiatrist. That's an MD who specializes in functional medicine and rehab. Dr Seo had sent me to one and that's how I got started in the pool. They rehab amputees and stroke victims, along with people who are seriously deconditioned due to illness.

[Jack]

Just back from my routine hospital appointment. Took bloods for around 10 different tests and had a chat with the doc who was a new guy that I had not seen before. He had a student with him so it was a chance to spread the word!

Everything seems to be fine and he will let me know if there are any problems with today's tests. He was having a good moan about other docs not reacting when they were presented with multiple odd symptoms and also not checking kidney function. A simple and cheap urine dip test would immediately highlight a potential problem and then they could save a lot more patients from suffering failure as occurred in my case.

We also had a chat about the use of steroids for transplant and Wegener's. His opinion was that transplant patients were better off if steroids were stopped in spite of the increased risk of rejection, but he thought that it did seem to reduce flare ups of Wegener's and should generally be continued at a low dose. He thought that the 10mg I take was too much, but fully understood that I would probably not be able to get below that level given my history.

[Sangye]

Great news, Jack. I'm glad your appointment went well and things are stable. Thanks for the added info about steroids and transplants. I hope Dunkie sees your post.

Even though I've never had kidney involvement, Dr Seo orders a urinalysis once a month. Nothing to do with my case in particular, just routine check for Weggies.

[renidrag]

Good news Jack. My monthly bloods include urine to check the kidneys. All still good
Dale

[Brooke]

Glad everything is going well for you Jack and I hope the blood tests com back good !
That is great you were able to spread the word a little more about Wegener's

[chrisTIn@]

Jack. I read in one of your messages here ont he WG-forum that you had renal-failure without any warning signs.
That scared me to death.

Is there really no sign at all when your kidney's fail? I'd like to know...

[Jack]

I'm afraid that it is true. I had lots of what I now recognise as Wegener's symptoms - sinus, joints, skin and general lack of energy so I was not feeling at my best by any means, but nothing that indicated renal failure. Even my regulation of water was still functioning, even though my kidneys were not doing the rest of their job. The ENT ward in the hospital where I was staying did not recognise that I was in serious trouble because they did none of the routine blood tests or even urine tests that they perhaps should have done. They were, after all, looking for a sinus infection. A little internet research has confirmed that renal failure is often asymptomatic and can cause death by a Potassium induced heart attack.

[drz]

Jack. I read in one of your messages here ont he WG-forum that you had renal-failure without any warning signs.
That scared me to death.

Is there really no sign at all when your kidney's fail? I'd like to know...

Kidney failure can happen quickly and you won't feel any changes till too late. Frequent lab work is only way to recognize it and get a handle on treatment before it is too late. I lost a lot of kidney function in the first few days of hospital stay before diagnosis but was lucky to have enough recovery after treatment started to avoid dialysis but kidney function is still only about half of what it was before diagnosis of Wegener's. A lot of signs of kidney failure are same as for Wegener's--shortness of breath, fatigue, poor endurance etc.

[Jack]

At my last Renal Clinic visit the doc was despairing that a couple of simple urine dip tests were not a routine part of hospital treatment. These would immediately ring alarm bells if anything was going wrong and are super cheap and easy to perform. I expect that a good proportion of his patients could have been saved by this early treatment.