View Full Version : What do you do when you feel ill?

01-06-2010, 12:59 AM
By this I mean, if it's the weekend, or in the evening, and you suddenly felt ill - would you go to the GP (in the UK we have an out of hours GP service), or would you go straight to the ER?

I don't see much point in seeing my out of hours GP really, only in that, they can't do bloods, and I tend to find that their knowledge of WG is so limited, that they can't really help... The last time I felt very ill, I had severe pain upon swollowing, so I went to the GP first. The doctor looked at me as though I was compeltely wasting her time, and sent me home. I cried walking back to the car, as the pain was so bad! So I took myself to the ER, and as it happened, I had an inflammed vagus nerve, and my bp and pulse had also dropped very very low. I was admitted on IV morphine and IV pred for nearly two weeks, - and the GP thought there was nothing wrong with me!

So, anyway, when you're ill - do you tend to bypass the GP and go straight to the hospital? Or do you have direct access to a rheumy?

01-06-2010, 01:21 AM
That's a tough one.

If I suspect it is a flare I get on the phone right away to my Rheumy. If my Rheumy is away I go to my GP or ER. I guess it depends on how bad it is and how desperate I am. My Rheumy was gone for 2 weeks over Christmas break but was able to get a hold of my ENT. If I wasn't able to get a hold of my ENT I would go to my GP or ER.

01-06-2010, 01:34 AM
Very much depends on the symptoms I'm getting. If I suspect a Wegener's flare, I would be on the phone to the renal department who look after me and they would tell me to come straight in for blood tests or a consultation if it looked serious.

Before Christmas, I had a pulmonary embolism and rang my GP. He told me to come in immediately so that he could check me out. He then rang the hospital and got me onto an assessment ward within the hour.

If I just feel crap (quite common), I wrap up warm and sit in front of the TV.

I only go to ER for obvious stuff like broken bones.

01-06-2010, 02:50 AM
It depends what's going on. I have a pretty good sense of my Wegs symptoms--some flare up from over-exerting but resolve with rest, and others signal a more serious flare. I also know my general low energy vs the extreme weakness I get when the Wegs is very active.

Because JHU is 1-1/2 hrs away, if I have an urgent problem, I page my rheumy or hematologist and ask them what to do. Sometimes they say go the the ER, sometimes just wait, maybe just get blood work in the next few days, etc... I can also email my rheumy and hematologist during the week for general, non-urgent questions and to ask if I need to see them or get a test done, etc...

01-06-2010, 03:42 AM
Phil Seo is You're Rheumy, right Sangye?

What does a Hematologist do?

01-06-2010, 03:46 AM
If I feel like crap and have a fever over 102, I will call the doctor. If there are more symptoms along with it like nausea, chest pain, dizziness , joint pain, shortness of breath ..I'm going to the Emergency room. No fever, but somethings not right I will leave a message with the nurse. If it is after hours and have a fever of a 102 for a couple of days and not getting better just go to the emergency room. Or if you feel something is not right just go to the emergency ( after hours).

01-06-2010, 04:23 AM
Phil, my hematologist technically just takes care of my blood clot issues. But he likes to be more involved than that. He's an exceptional doctor who always wants to know everything that's happening with all his patients.

Last spring when I kept getting hospitalized for pneumonia but still felt awful, I couldn't get into Dr Seo or get any messages to him. It was a weird thing. I emailed my hematologist with the situation and he got me right in. He's the one who increased my Cellcept to 3,000 mg "just in case" it was a Wegs flare. That hunch saved my life.

01-06-2010, 04:25 AM
That's awesome Sangye. It's good to know you have a good and caring doc like that. He sounds fairly knowledgable about WG.

01-06-2010, 08:01 PM
I am seeing a Hemotologist on the 19th for a follow up to the embolism 12/12/09. All my Doctors are affiliated with the same HMO here so they can all comunicate. What questions should I be asking? I just assume the filter is working and the coumadin and lovenox will level off my INR. Then get off the Lovenox. What will they be looking for?
Thanks, Dale

01-06-2010, 09:05 PM
I'm not even sure Dale. I not sure what Coumadin and Lovenox are. I think Coumadin is a blood thinning drug? What exactly is an embolism and INR? I think others like Sangye will be able to help you with this one.

01-06-2010, 09:47 PM
An embolism is a blockage to a blood vessel (usually a blood clot) that has been formed in one part of the body, but has migrated to another. The danger is that it will move again and block something serious!

INR is a way of measuring how well the blood forms clots. The higher the number, the less likely for a clot to form, but the risk of an uncontrolled (perhaps internal) bleed increases. For this reason, it is vital that regular blood tests are made.

The practice in the UK is to keep you on warfarin (another blood thinning drug) for 6 months following a first occurance. If you have a second, then you take it for life.

01-07-2010, 01:56 AM
Dale, they'll be looking to see how well your body has reabsorbed the clot and how your INR is doing. They should be able to take you off the Lovenox. (Usually you're only on that about 3 days when you start coumadin, so I don't know why it's been longer for you.)

They should also discuss the results of other blood tests that look for genetic clotting disorders. Those tests are done when you have a clot--standard of care-- to see why you had it. Wegs certainly predisposes you, but if you also have a clotting disorder your risk of future clots is even higher. Many clotting disorders don't show up until mid-life or so.

In my case, I'm heterozygous for Factor V/Leiden Factor. I have a partial gene for it, which by itself only makes me mildly prone to clots. It would never be an issue on its own. But because I have Wegs, had tons of leg and lung clots, and had repeat clots, I have a much higher lifetime risk of clots. I have to be on coumadin for life.

My hematologist also said a history of pulmonary emboli (lung clots) is worse than "just" DVTs (leg clots).

01-07-2010, 02:54 AM
My hematologist also said a history of pulmonary emboli (lung clots) is worse than "just" DVTs (leg clots).
The doctors here take PE quite seriously while the DVT I had earlier in the year was very much routine stuff.

01-07-2010, 06:17 AM
I only had one DVT in my life , blood clot in my left leg. I was 16 years old. At that time I was given IV heparin and then sent home with coumadin for 6 months. I had no clue how dangerous a blood clot was. Doctors never explained it to me or the dangers of the clot traveling or causing a stroke or heart attack.

01-07-2010, 06:30 AM
Is DVT a risk with wegeners then??

01-07-2010, 06:30 AM
Coumadin is a really dangerous drug. Its effect on the body is changed by all kinds of things (drugs, diet etc) so it must be monitored by regular blood tests. Of all the drugs I take, this one is the most highly regulated and I can't get a prescription or collect the pills without producing proof of my last blood test results.

Wegener's puts you at high risk of DVT, embolism etc. :(

01-07-2010, 06:31 AM
I only had one DVT in my life , blood clot in my left leg. I was 16 years old. At that time I was given IV heparin and then sent home with coumadin for 6 months. I had no clue how dangerous a blood clot was. Doctors never explained it to me or the dangers of the clot traveling or causing a stroke or heart attack.

That must have been so frightening! What were your symptoms of having a dvt in your leg? Did it get very swollen?

01-07-2010, 06:37 AM
When I had a DVT my leg was slightly warm, slightly swollen and painful when standing, but OK when sitting with it raised. Diagnosis is confirmed by blood tests and ultrasound.

01-07-2010, 08:26 AM
Gwen, my lower left calf was swollen and had a tight feeling. I could barely walk I walked on it for a long time. Thought I pulled a muscle and never mentioned it to anyone until it really hurt. It is a wonder I made it through my teens. I was really clueless! Most likely in denial.

01-07-2010, 08:59 AM
Gwen, the risk of Weggies developing clots is about 23% higher than non-Weggies. It usually occurs during active phases of the disease, but not exclusively.

I was dx'ed with Weg in 2006, with massive lung hemorrhaging. I was started on 1,000 mg IV solumedrol (equiv 1,250 mg oral pred) in the ICU. I was ambulatory. On the 3rd day I went to stand up, and both calves went into tetany (the strongest muscle contraction possible; totally locked). I instantly sat back down and told the nurse "Blood clots." I don't know how I knew so quickly. Chiropractors are trained to diagnose them, but sheesh!

Because I was on massive doses of pred my docs said there was no way I could have clots, that the anti-inflammatory quality of pred would have made it impossible. I insisted on a leg ultrasound. It was negative, but the tetany continued. A week later I was discharged, still with both legs in tetany--excruciating pain. I was incredibly weak at home but tried walking around my bedroom to unlock them. I would get completely nauseous from it and would almost pass out. My docs just said take calcium and walk it out.

By the third week, I woke up and was far weaker. I was already on oxygen and had a terrible time breathing, but I was even worse. I don't know how to describe it, but it was like my body alarm went off. I told my mom to call and tell my pulmy I was on the way to his office. I made her drive through red lights to get there. Luckily it was only 5 miles away. I wasn't thinking blood clots, but I knew I was in jeopardy. My pulse oxygen measured 100% (even with hemorrhaging lungs and at high altitude!) and lungs sounded clear. The doc said I was fine--nothing new. The nurse said "There's no way it can be your lungs with those vitals."

Thankfully, he decided to order a chest and leg CT and I went across the street to the hospital for it. As I sat in a wheelchair waiting for the results, instead of the tech, my pulmy showed up and was white as a ghost. He said, "Don't move a single muscle. You're completely filled with clots. Legs, lungs--filled." I asked him how many and he said "Uncountable." (One was countable-- it was as thick as my pinky and ran the length of my thigh.)

He kept saying "How could this have happened?" He looked like he was going to faint. I was calm. When he explained that I had to be admitted and put on blood thinners, he said he was terrified. Blood thinners with hemorrhaging lungs. Not a good combo. He was a 25 yr ICU veteran--nothing scared him-- but he had never seen this combo before and was visibly shaken.

I've asked numerous ultrasound techs why the first test was negative. Apparently it can take awhile for a clot to "organize" itself and be visible. Still, not a single tech or doctor can explain how I survived to tell the story, much less how I survived the pain for 3 weeks without even taking an aspirin! I'm one tough cookie. (Mmmm, cookies...)

01-07-2010, 12:23 PM
Thanks so much Sangye for sharing, this helps others to see what it's like to have blood clots in the lungs and legs. You are a walking miracle.

01-07-2010, 02:42 PM
Well I am certainly thankful for ONE TOUGH COOKIE. It must have taken alot of will power not to take pain meds. I insisted on high dose morphine as I hadn't slept a wink in 7 days.

02-17-2010, 07:27 AM
Thought I would resurrect this thread mainly as an excuse to have a moan about how crap I feel at the moment. My earlier symptoms of pluracy have returned with pain in my left side, similar to a broken rib. On top of this I have now caught a cold that both my wife and daughter already have. The main symptom of this is a sore throat, but in my case it spreads right down into my chest and hurts like hell when I cough or swallow. I've already switched my antibiotic back to Amoxycilin and will see my GP tomorrow to get some more unless he discovers something that I don't yet know about!

02-17-2010, 07:49 AM
Hi Jack
Sorry to hear you're feeling so poorly. Are the antibiotics helping at all?
Have you had your bloods done?

02-17-2010, 08:05 AM
Jack, i t must be awful to be so down again. I can\t do anything but send a smile and hope that it catches :)

02-17-2010, 08:08 AM
Thanks for the kind thoughts. I've only had this a few days and there are no Wegener's or PE symptoms so I'm not too concerned at the moment. It took about a week for the antibiotics to work last time, but I only have a few days worth so that is what is driving me to see the doc. I know that I should be doing this anyway, but you know how it is. ;)

02-17-2010, 08:13 AM
Oh Jack, that just stinks. I'm sorry you're hurting and feeling sick on top of it. Are you sure it's not a PE, though? They can be sneaky.

02-17-2010, 08:16 AM
hope you feel better soon DEE x ps couldnt sieep!!!

02-17-2010, 08:27 AM
No way of telling for sure that it is not a PE, but I'm not short of breath and I'm now taking Warfarin so I'm banking on it just being infection and the family cold. I'll see what the GP says and give it a week before I get worried.

My GP is a really nice man with lots of time to talk and discuss things, but I'm a bit dubious about his abilities. He has already missed one of my skin cancers and he did not think I had a PE at Christmas, but he does everything I ask and refers me to specialists without hesitation.

02-17-2010, 08:51 AM
Sorry Jack, I feel the same way. Husband has pneumonia, kids have bad colds ( already to them to the peds doc yesterday). I have drainage and sore throat for two days. I started taking my Bactrim DS yesterday two pills a day 12 hours apart. So if I don't feel better by tomorrow I want to get checked for strep.
Jack glad you are going to the doctor especially when you chest is feeling like hell. Good luck....

02-17-2010, 08:56 AM
Elephant, you're totally surrounded! I hope the Bactrim works for whatever bug you have. Do you have anyone to help you take care of the kids since hubby is sick, too?

Jack, you should at least get blood work tomorrow and check your INR. Unless you check your warfarin weekly, it can go in and out of range very easily.

02-17-2010, 09:01 AM
I've been having weekly INR checks and I'm reasonably stable. I was meant to go for one yesterday, but did not feel well enough and canceled. Oops!

02-17-2010, 09:11 AM
No, I don't have any help. Hubby is bedridden, getting better. I am doing little as possible, but not sleeping really good. I don't think the Bactrim covers strep throat. Anyways I will survive..hey hey ( infection, virus and wegeners) walk out the door, turn around now don't want to see you ( infection...ect) anymore...I got one life to live.....hey..hey...

02-17-2010, 02:37 PM
hey hey to that elephant. Bactrim will not help strep throat, you should get a second antibiotic

02-17-2010, 02:53 PM
But we enjoyed your little song anyway... :D

02-22-2010, 06:33 PM
One thing moves aside to make room for another -

My sore throat has gone.
The pain in my lung (?) was beginning to go.
I've broken another rib!
Damn! :(

02-22-2010, 09:59 PM
Geez Jack, so sorry to hear that! How long does it take to heal?

02-22-2010, 10:57 PM
hi jack sorry to hear about rib nearly joined u tripped over puppy he will insist going everywhere with me but sometimes stops without warning didnt help walking down path with snow on BARON not happy said i shouldnt have gone out in the first place he would of gone !!! (going

02-22-2010, 11:00 PM
................ to the frezzer had to have ice cream !!!!!!!!!! DEE x

02-22-2010, 11:25 PM
Geez Jack, so sorry to hear that! How long does it take to heal?
It will hurt for three weeks. Not looking forward to that.

All I did was strain a bit to get down onto the floor (decorating the bathroom!) and it just popped. My bones are in a terrible state!
Never mind. A couple of Paracetamol and I've still been able to paint the door and radiator this morning. :)

02-22-2010, 11:34 PM
Oh, Jack...hope you're feeling better soon!

02-23-2010, 12:37 AM
Hi Jack, those ribs are a pain in the front!! Pretend you are an ant and take short breaths is the only good advice I can give. And............don't laugh, smile is fine :)

02-23-2010, 01:14 AM
Jack... reading that news actually made me groan out loud. I'm so sorry. I think you're on something for your bones already, but I'm thinking it might be a good idea to get a consult with a specialist to see if there's something more/different you can do. Also, do you have your vitamin D level checked very regularly?

Take care-- wishing you a fast recovery. :)

02-23-2010, 01:19 AM
My prayers are with you Jack!

I feel the same way Sangye does. I cant imagine what it must be like. Please be carefull.

02-23-2010, 05:39 AM
Sorry to hear about your ribs Jack. I hope you get to feeling better soon. Thank you for taking the time to respond to posts!!!

02-23-2010, 06:20 AM
The support you get on this site is fantastic isn't it? :)

Thanks everyone.

02-23-2010, 07:34 AM
I don't know where I'd be without all of you. I'm so grateful for you. :)

02-23-2010, 11:41 AM
It is fantastic, and your adivce and support are stellar. Hope you are feeling better quickly, I'm sending you light.

02-23-2010, 11:49 AM
I am greatful for the people on this forum. You all are family. Wish everyone to be better real soon.

02-23-2010, 05:25 PM
The support is phenomenal, advise pricless, comraderie heaven sent. thank you all.