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Lightwarrior
01-25-2010, 04:11 PM
Hi, I'm happy to find a forum to help make sense of WG. I am a Clinical Nurse Expert in an ICU and I also teach Bachelors and Masters level nurses in an academic online environment.(not always a help, sometimes a little knowledge can be dangerous :-) )I have two daughters, one lives with me and five grandchildren who all live me. The oldest grandchild is 17 and the youngest 2. My oldest grandsons Boxer puppy who is almost a year old and a cat who the babies call bunny.

In July I started noticing that I went into anaroebic metabolism much quicker than I should be (started getting really tired from walking from my carinto the hospital). Prior to July I had a string of odd things which I chalked up to my 100,000 mile check up at age 54. In Februrary I broke my foot, in March I had a retina spontanesouly detach and in a CT that was done in July for a kidney stone it picked up an odd wedge shaped infiltrate on my lower lung. SInce this was odd, they did a repeat CT with contrast which also showed a Thyroid mass (benign after investigation, mulit-nodular goiter) one Doc thought I had an unusual pnx and another one thought I had Valley Fever, one of the Intensivists I worked with thought there was more too it and urged me to keep looking. Then I progressed to joint stiffness that was acutely increasing, started with my hands and then my knees, my ankles and finally it got so bad I couldn't walk from my office to the front of the unit. I have a great Nurse Practiotioner as my primary and she ran some tests, my ANA was negative, my Rheumtoid Factor was negative so she sent me to a Rheumatologist, meanwhile on Thanksgiving day I broke out in a rash that looked like petichiae/purpura (sometimes being a nurse helps, sometimes I think it makes things more scary). This guy took me seriously, out of a long list of blood test the only positive test was the C-ANCA. I hurt so badly that they started me on 60mg of Predisone on December 9th and 250mg Cytoxan on December 14th. The joint relief occured within 2 daysk. I now have a pulmonologist, nephrogolist, Rheumotologist along with my primary. So far all of my numbers for kidney function are normal and my last CT showed a lot of the infiltrates clearing.

I understand from reading and the Docs that I will need to be on steroids high dose for another month or so and then start tapering down to 40mg, and that I will need to be on the Cytoxan for about a year, at which time I can switch to methotrexate. At first I was unable to sleep and spent all of December and part of January cleaning and organizing every inch of my house while my family slept. My rheumotolgist starte me on 5mg amotryptoline for sleep and I have been sleeping three to four hours at a time. The last two weeks have been much tougher. I am tired all of the time.

Today it hurts my back and hips to stand for more than a few minutes, I seem to be okay, just sleepy when I am lying down or sitting in my recliner.

How do I know when I am in remission?? I want to go back to work on Feb 1. How immunocomprised will I be? If my WBC is within normal limits can I be in the unit?

I'm just starting this journey my overwhelming feeling about all of it is gratitutde. We figured it out in time, my friends and family have been amazing, the drugs have backed off the horrible joint pain. i'm confused about what is normal and when I should worry.

Jack
01-25-2010, 06:14 PM
Hi Lightwarrior and welcome to the Forum. :)

Glad you got a quick diagnosis before too much harm was done. It is good to see that your medics take you seriously and your own knowledge will help a lot. Does your Rheumatologist have much experience of vasculitis and Wegener's in particular? It is an odd disease where experiece counts for a gread deal. It is not all written down in the books as I'm sure you will soon find from reading some of the posts on here.

12 months on Cytoxan is quite a long time because the drug has serious long term side effects. It is perhaps more usual to switch to something less aggressive such as Azathioprine as soon as the disease seems to be coming under control. The best judge of this is probably yourself and how you feel. The blood tests available don't give a yes/no answer to your state of remission.

I'm sure plenty more will be along to offer their advice. ;)

Jack.

elephant
01-25-2010, 11:12 PM
Hi Lightwarrior, I agree with Jack..being on cytoxan for a year is not good. I know if your on high doses of prednisone it can destroy bone and cause necrosis esp the hips.
If your feeling tired and not well, I recommend you don't work. What does your Rheumy think? Do you go to a WG specialist? I go to Cleveland Clinic in Ohio and drive 10 hours one way. It is worth the trip. I have a local Rheumy and see this one when I feel the need or it will be once a year.
There could be many reasons your tired...one of them still active Wg....secondly the medicine for sleep may be too much...
Let your Rheumy know how you are feeling esp if these symptoms are new. They may need to do CT scans and blood work. I am a RN too. Last job Case Management.

Sangye
01-26-2010, 02:55 AM
Hi Lightwarrior,
Welcome to the group! Good to have another health care professional on board!

Jack and Elephant are old hands at this Wegs business. I'm usually the one who does the major nagging about getting a Wegs specialist no matter how your treatment is going. Regular specialists are not skilled to handle Wegs or to understand the nuances of this sneaky disease. The Wegs specialists aren't fond of the "1-yr on ctx" plan that was the standard protocol until a few years ago. Like Jack said, they usually transition you onto a milder drug like imuran, methotrexate or Cellcept after 3-6 months of ctx.

My original docs told me the 1-yr ctx plan, too. They seemed okay at first--willing to research, etc... But their ignorance about Wegs nearly killed me and wound up doing permanent damage. I went to Mayo AZ and got better care but not a Wegs specialist. I limped along, experiencing numerous life-threatening complications and never getting into remission. Now I'm at JHU, a major Wegs center, and finally getting excellent care. I'm still in pretty bad shape, 3.5 yrs post-dx (4.5 yrs after first major symptoms). This is why I really nag on this issue!

Lightwarrior
01-26-2010, 03:17 AM
Thanks Jack, I felt like a year was a long time also. I am only the second Wegeners that my Rheumatologist has seen, my pulmonologist has only read about it and my nephrologist manages winter vistors when they are her with Wegeners so he has the most experience. He is managing my meds but is used to me asking for I want for patients so I have to remind him that I am the novice and he has to be the expert. Since I write most of the protocols and order sets based on the latest evidence for the pulmonologist and nephrologist they are very open to suggestions I have so I will bring up the time frames for meds. My rheumologist seems to know more about it and he was the most panicked at my first visit and pushed the hardest to get me started on treatment. Those last few days before I started the prednisone I honestly would have almost welcomed death to escape the pain (I wasn't sucidal).

I live in a rural border community three hours from Phoenix and San Diego. I wonder if it would be possible to arrange for consults with Cleveland Clinic or one of the Docs I work with has connections with the Boston medical community??

I am impressed with the level of support evident on this forum and add it to the many positive things that have happened since I was diagnosed.

Lightwarrior
01-26-2010, 03:22 AM
Thanks elephant, I have had hip pain the last three days that prevents me from standing for more than two or three minutes at a time. I am a lightweight when it comes to medication, I may try to take the amitryptiline every other night, thanks for the suggestion. Nice to meet another RN, I love case managers they make patient care flow and keep people from falling through the cracks.

Lightwarrior
01-26-2010, 03:29 AM
Sangye,
Thanks for the welcome it feels so good to find a group of people going through this. You really put a voice to my fears, that well intentioned, lack of knowledge my kill me or cause more damage. My Rheumy told me my last visit that he was afraid I was too far into the pulmonary symptons and that he was really scared for me when he first saw me. I do credit him for nagging my other Docs to move more quickly. Which they did when he scared them. Oh, by the way I value naggers. :-)

elephant
01-26-2010, 03:50 AM
Lightwarrior- love the name. It is best to see a Rheumatologist ( WG specialist) because that way they get to know you and they do a great job head to toe assesement and check out every symtom/medicines and so forth. You could fly to one of the four WG specialist in the country. Look into the Vasculitis Foundation and see the references. I see Carol Langford at the Cleveland Clinic, Ohio. Love her! I know people on this website see other WG specialist and are pleased with them too. Get that hip checked out. You probably should call your doctor today about your symptoms...
It could be other things going on... drug reaction and such...not to alarm you....

Lightwarrior
01-26-2010, 04:02 AM
I do seem to remember that femoral head necrosis is either part of WG or a side effect of Pred or Cytoxan. I'll make the call, since this is all new ground I'm walking on I'd rather be safe than sorry. Thanks.

Sangye
01-26-2010, 04:30 AM
Yes, take it from me, you really can't manage your own care with Wegs. It's WAY too complicated and bizarre. The best thing is as Elephant says-- travel to a major Wegs center and see a Wegs doc in person. Then s/he can work with your local docs at home. You'd have a personal connection to the doc and could travel there every few months. I can't emphasize the importance of this enough. It's costly and time-consuming. But I haven't been able to work in 3.5 yrs because of improper care.

The major Wegs centers are JHU (Baltimore), Cleveland Clinic, Mayo Rochester and Boston University.

The Vasculitis Foundation has a list of these consultant docs who specialize in Wegs. They'll work with your docs for free, even if you've never met with them. However, this means your only communication with them is through your local doc-- no way to ask questions or engage in the very useful conversations about Wegs.

Sangye
01-26-2010, 04:35 AM
Lightwarrior, Avascular necrosis (AVN) of the femoral heads typically happens after long periods on pred. If you're having hip pain, it's most likely Wegs.

Lightwarrior
01-26-2010, 04:42 AM
Thanks, this isn't nice and neat and predictable. I train ICU nurses to anticipate what is coming next so they can avoid it. this is frustrating. The universe has always given me what I need, but has a wicked sense of humor, I suspect I am having to learn that everything is not predictable. Maybe I have a book in me? insteaed of Zen and the Art of Motor Cycle Maintenance I could call it Zen and the Art of living with WG? (LOL)

Sangye
01-26-2010, 04:57 AM
Yes, with the exception of 3 or 4 other very rare AI diseases, I don't know of any disease quite like Wegs. Symptoms are all over the map (even within the same person), tests are fairly useless to evaluate progression or response to treatment, almost impossible to give any prognosis other than "We hope if we do ___ then you will respond like ____ in ___ amt of time." Even ESR and CRP results can be misleading. Mine don't elevate until I'm headed for the ICU.

Wegs is all about uncertainty. The faster you can get comfortable with that, the better. I've made lots of progress but still find myself crying my eyes out a lot lately with frustration. This is why I'm so determined to get every Weggie to a Wegs doc. Even with the best ones in the world, the uncertainty factor is huge.

elephant
01-26-2010, 01:22 PM
Lightwarrior, the good thing is that you have a wealth of knowledge in the medical feild! So you will be able to pick things up quicker. Hope you find a WG soon. Keep us posted on your hip.

Jack
01-26-2010, 06:59 PM
I will need to be on the Cytoxan for about a year
This (http://rheumatology.oxfordjournals.org/cgi/content/full/46/10/1615) article suggests that 3 - 6 months of treatment with cytoxan should be the maximum. Contributors include my own Rheumy, Prof. P. Bacon.
The reference at the bottom of the page might be of interest too. It suggests that Statins might be a useful area of research.

Lightwarrior
01-27-2010, 05:20 AM
Thanks Jack, I needed this. I downloaded and saved and am forwarding to my Docs, I am going to take your advice and that of other smart people on this forum and look at the Doc consults on the Vasculitis site. Flying to a center is not an option right now.

Sangye
01-27-2010, 09:49 AM
I looked at your initial post and saw that we haven't answered some of your questions. You asked how immune-compromised you'll be. You won't be severely neutropenic, but you will certainly be highly susceptible to infections. Wegs can mimic infection (and vice-versa), making it much harder to treat in time.

I don't think working in a unit is a good idea while on cytoxan. Many Weggies die from infections rather than Wegs. If you do get an infection they can't stop giving you the ctx and pred, even though both make it extremely difficult to fight off an infection. Viral infections are a big problem, of course. Stress is also a major trigger for Wegs, making an ICU environment one of the least desirable for getting well. This is all assuming you have the strength to work, too. Those are pretty tough drugs. The first couple weeks or so you usually just feel relief because the pain is gone. Then the side effects start to roll in.

It's best if you can take a few months off and let the treatment work.

MCC
01-28-2010, 01:40 PM
Hi, I've recently been diagnosed also- just started treatment 3 weeks ago so I don't know a great deal but just thought I'd answer from how much treatment is panning out.

I took three weeks off with illness before diagnosis but I am now back at work full time (office job) and am just going to regular hospital appointments and fitting it around my hours.
I've had two doses of cyclophosamide so far and on the second dose I was told I now need to monitor my temperature to check I am not becoming unwell and I have a letter about neutropenia to carry around. I have been told that the danger of getting unwell from being immunosuppressed is not too great- other people with colds etc are not really a danger, but I should stay away from people with anything more serious such as measles/flu etc. I also have so many other drugs in addition to prednisone to combat side effects and infection.

RCOSSIO
01-28-2010, 02:54 PM
First welcome aboard...I unfortunately was on Cytoxan for one year and have been on Cellcept for 8 months now. As far as getting back to work, I had opened my business one week after leaving the hospital. So as far as going back to work it all depends on how you feel. Yes I was still tired and a bit lethargic, but manage to pull through within 3 weeks. Anyway good luck!

elephant
01-28-2010, 10:36 PM
Richard, how is the cellcept working for you. I started cellcept March 2009. I'm on 2000mg a day. Are you off Prednisone?

Sangye
01-29-2010, 02:44 AM
Mandy, who told you the risk of becoming sick while immunosuppressed is not that great? That doesn't even make sense. It's not like the immune system is optional in life! Many Weggies die from infections instead of Wegs. Without a strong immune response, a cold can easily turn into pneumonia, and the pneumonia can easily become life-threatening. Whoever told you that should go back to 1st year medical school. Or junior high. Aargh.

MCC
01-29-2010, 07:38 AM
Mandy, who told you the risk of becoming sick while immunosuppressed is not that great? That doesn't even make sense. It's not like the immune system is optional in life! Many Weggies die from infections instead of Wegs. Without a strong immune response, a cold can easily turn into pneumonia, and the pneumonia can easily become life-threatening. Whoever told you that should go back to 1st year medical school. Or junior high. Aargh.

Perhaps I worded it wrong! Both a nurse and my doctor have told me not to be too concerned about people with a cold, but that it is people who have a more serious illness such as measles who I should avoid. I've been told to take my temperature every day to check it does't go over 38.

They said my immune system could still deal with a cold. Is this not the case then?

Realistically it would be difficult to avoid people with minor illness anyway...am actually at the airport at the moment waiting to board a domestic flight and have been a bit worried since last night about catching something on the plane!

Sangye
01-29-2010, 07:58 AM
Okay yes, your immune system could typically still deal with a cold. It depends on your current situation, though. There have been times when I was so weak that a simple cold would certainly have turned into a major illness.

Many Weggies find that a simple infection really wipes them out much more than it would have before Wegs. That's due to Wegs and the drugs. In addition to taking your temp, take note of a sudden drop in energy. That's often a sign that your body is fighting off an infection.

Flying is risky. Use hand sanitizer liberally, gargle with warm salt water as much as you can after flying, rinse out your nostrils with warm salt water, and sip warm/hot fluids during your flight. Make sure you rest a lot the next day, too.

elephant
01-29-2010, 08:26 AM
Ever since I was diagnosed, I will not even get on a plane. Several reasons: my sinuses are awful, eustachian tubes clogged on/off, afraid of picking up germs ( to confined), and I pee way too much.

MCC
01-29-2010, 08:29 AM
Thanks for that, I shall use the advice if I ever leave- have been delayed for three hours now.

Sangye
01-29-2010, 09:56 AM
LOL-- okay, I'm sure it's not funny right now, but later?

moyan
01-29-2010, 10:16 AM
Thanks, Sangye. for a month I have had no energy to do anything, and you tell me that is probably because the infection in my foot. Continued with the antibiotics and it is going down and I feel a heck of a lot better.

elephant
01-29-2010, 10:26 AM
Moyan glad you are feeling better.

Sangye
01-29-2010, 12:19 PM
That's great to hear, Moyan. I hope it completely clears up this time.

onatreetop
01-29-2010, 01:45 PM
Speaking of feet.......... I tore my plantar whatchamcallit. Thats why my foot is giving me problems. Took another MRI to find out but I did!!!!! And welcome Lightwarrior!!! I have had little time to respond but have been trying to keep up on the reading. It took me from October til Jan. to get to a WG specialist in Balitomre at JHU. It was so nice to be able to speek to a doctor that understood what i was really talking about. And to be able to question and get a really good answer too. That was a three hour drive not bad but worth it. My RA has only seen 12 people with WG and claims that that is a lot for a private RA. I am starting to believe hes right. The JHU DR. said he had seen a few hundred so............... rare is a good word. I am on my 7th month of oral cytox and pred. up and down a few times now. Really want down again. The pred I am having a harder time with than the cytox but that is an old story.

Sangye
01-30-2010, 01:32 AM
Plantar fascia. You've really got to let that heal or you'll be dealing with it forever. I forget if I/we've mentioned it, but pred makes it easy to rupture tendons and ligaments. Be careful out there!

JanW
01-30-2010, 04:06 AM
I'm still dealing with foot issues related to PF that flared up more than six months ago (both feet, first time). Be careful! These things can take a long time to heal. There are many stretches that you can (and should) do that are good.

moyan
01-30-2010, 04:11 AM
Sounds familiar, thank you. :)

onatreetop
01-30-2010, 09:54 AM
That explains the tendon pains etc. They offered me cruches but they went to get them and they where gone. I looked it up. up to a year to heal if it heals. Great another body part I am willing to trade in already!!!! that will teach me to work a full day then go dancing into the early morning in uggs!!!

RCOSSIO
01-30-2010, 10:10 AM
Elephant so far so good, still on pred though...weaning 1mg every 2 weeks....seems brutal every time i go down by one which is 10%. Anyway, feel very good nonetheless exercising, golfing and riding my bike much more frequently

elephant
01-30-2010, 11:13 AM
Richard, how long will you stay on Cellcept? How much pred are you on?

moyan
01-30-2010, 11:56 AM
Oh tree, what could I say to make you smile? Maybe it is your body telling you "SLOW DOWN" lady.

Sangye
01-30-2010, 02:31 PM
Richard, I'm so glad to hear you're doing well. How much pred are you on right now?

Doug
01-31-2010, 07:36 AM
Lightwarrior ~ Welcome to the forum! I've been off a few days, and it takes FOREVER to catch up! I agree with the recommendation you stay off the floor for awhile as you will be more susceptible to infection , especially in the intial stages. On top of it, you will have more severe infections because of the suppressed immune system. If you have them, I mean. As a nurse you already have knowl;edge of infection control, and following those reasonable steps, you should be OK. DO NOT (I can't resist noting I nag, too!) let yourself get run down. Prednisone makes your feel like Super Woman now, but you don't have actual reserves to support that extra activity. You don't have to bed yourself down and become an invalid, but you definitely have to become aware of your body's signals that you are over doing physical activities, lest you become rundown. (Nurses are terrible about this, so don't deny it! I've been cared for by nurses so sick they called in but, when others called in sicker, came back and worked 12 hour shifts!)

I laughed (not meanly!) when I read about what you did at night, on Prednisone! I organized, cleaned, baked, etc. until I got down to lower dosaages. I wish I'd been prescribed something to help me sleep, but I bet I didn't mention the sleep issue to my doctors at the time, I had so many other issues to deal with.

REMISSION: Among us, we on the forum compared notes and generally refer to it not as that point when we are asymptomic, but when we notice we feel better, are on a plateau we independently named "new normal". Sorry to report, it may not be something your doctors will agree on, so I have to say it is that point where you realize you are at a "new normal". Believe me, you will know you are there! Jack notes one of the good points you have going for you: early diagnosis, hence less healing to go through until tyhat "new normal" occurs!

Here (http://vasculitisfoundation.org/) is a link to the best source of information for the weggie in the USA, with a list of WG spoecialists who actually talk with you and may be able to recommend WG specialists your doctors can use in your treatment. As a nurse, you probably have a better insight into questions to ask doctors specific to your wg, but the list in the Vasculitis Foundation material is one I wish I had had when I was diagnosed back in December 2003.

(The reference to ZEN AND THE ART OF MOTORCYCLE MAINTENANCE was interesting to me as that was a guideline to me as a quality analyst during my working days. There is a Zen-like state of mind you need to develop to view your body in terms of all systems cranking together in some divine pattern that, when discerned, can be used to reconstruct the missing and broken parts. Ha!)

Lightwarrior
02-01-2010, 01:54 AM
Doug,
Thanks for the link. My mind is still having a million ideas a minute (before Wegs I only had 1000 visions/ideas a minute) but my body, specifically abdomen and legs feels weak and muscle aches when I stand or walk for more than two to three minutes. I had a UA, and a spinal series of xrays done (needed baseline anyway), no fractures, nothing grew in my urine, but I am on 800/1600 of Supra Monday, Wednesday and Friday since Lungs is a major component for me. I love this forum, the most constructive and intellegint advice I have comes from here. My providers are trying, but are used to depending on me to come up with patient solutions. (I now totally get why it is unethical to treat family/self).
The guideline that Jack sent me is golden.

I don't know why the weakness, I was at a Board Meeting for a Community Clinic that I sit on and I had tons of eneregy as long as I was seated, when I tried to stand to talk to people my back, my entire abdomen and legs ached, after three to four minutes my legs became weak and I became shakey. As soon as I sat down all symptons disappeared and I felt normal (okay, lol how do you define normal when I've NEVER been normal). Side note: I was born in Roswell, NM and most people who know me are convinced that my parents were the ones who crashed in that spaceship crash that Roswell is famous for)

I'm digressing and whining, You totally got the way the Zen reference, and yes I believe the body systems do crank together in some sort of diving pattern. I love the cellular level and am using guided imagery to imagine the adhesion molecules that dysfunction to form the granulomas are coated in teflon so they slide by each other rather than adhere/attach.

elephant
02-01-2010, 02:59 AM
Lightwarrior that is why this is a wonderful site. You can wine and moan and groan and nobody is going to judge you. We all need to vent and get our feeling out or we will just explode "Granulomas" everywhere!!!
Wegener's and the medicines combined produce that profound weakness. It will get better once you go in remission and the medicines are slowly decrease or omitted.

Sangye
02-01-2010, 08:19 AM
Yes, Lightwarrior-- that weakness is probably due to the pred. (And Wegs and ctx don't help!) It's one of the hardest things to describe to MDs or anyone else who hasn't experienced it directly. It took me almost a year to realize that just because MDs can list the side effects of a drug doesn't mean they have the slightest idea about what it's like to experience the side effect. The worst part is, they don't know that they don't know!

Feel free to grumble, moan or whatever on here. Like Elephant said, we don't want granulomas everywhere! :D

Sangye
02-01-2010, 08:27 AM
Also, be very conservative getting x-rays. I never would have anticipated how many x-rays and CT scans I would have just in 3.5 yrs. At this point I've had way over 50 x-rays and over 20 CTs--with and w/o contrast. I calculated my radiation exposure recently. It was over 3 times the radiation of Hiroshima.

Jack
02-01-2010, 09:08 AM
Sorry Sangye, but under the terms of the Strategic Arms Limitation Talks you are going to have to be dismantled! :(

elephant
02-01-2010, 10:58 AM
Wow Sangye, that is a lot! But during your WG Huge flares, you did what you had to do, and when your feeling like crap you listen to the doctors and kinda go with the flo...

Sangye
02-01-2010, 12:09 PM
Sorry Sangye, but under the terms of the Strategic Arms Limitation Talks you are going to have to be dismantled! :(
That got me laughing so hard I almost aspirated some cabbage. :D

Sangye
02-01-2010, 12:19 PM
Elephant, it's true that we have to do whatever is necessary. But a good deal of that radiation happened unnecessarily-- by ER docs who panicked or practiced CYA medicine, by non-Wegs docs who ignored symptoms in favor of CT scans, and even by my Mayo doc who insisted on x-raying almost every joint in my body to rule out inflammatory arthritides. Yet another reason why I nag Weggies to get a Wegs specialist early on, even if things are going okay.

The most frightening thing is that 95% of the radiation has been to my chest. Well, something has to kill me eventually.

Lightwarrior
02-02-2010, 02:22 AM
Ahhhh.....that explains why I glow in the dark now (Hiroshima radiation reference). Sangye, most of mine has been to the chest also. Maybe they could locate us all in one place, hook us up to cables and we could light a small city? (I warned you guys my sense of humor was odd :-))

JanW
02-02-2010, 03:17 AM
I think it's been well proven that there is an over-reliance on imaging today anyway. My rheumo specificially told me that he wouldn't never order CT scans of my chest as part of a routine course of treatment, although I had a small nodule (am awaiting 6 month follow up results now), and my ENT was able to brochoscope me in the office most of the way down my neck and get a clearer reading of my SS than the imaging I had six months ago (when I less experienced ENT brought the scope up as soon as I experienced a gagging sensation and forwarded me on to the radiologist, who, to his credit, said that WG should be explored in my case.

Sangye
02-02-2010, 03:35 AM
Lightwarrior-- I think your sense of humor fits in perfectly with this group. A couple of members (Luce, Crackers, Richard) haven't posted much lately, but they add to the nutty mix.

Jan-- definitely over-reliance is a huge problem. Also, Wegs is sneaky. Even when my lungs were completely packed with hemorrhaging blood, they sounded clear. Same with lung clots. And chest x-rays have shown minimal trouble, if anything. So we've had to do CT scans quite often just for routine follow-up. That's not true for everyone, though, and is a major source of frustration for me and my Wegs docs.

onatreetop
02-04-2010, 12:57 PM
OmG!! I have had over twenty test now in seven months!! The pulm doc says every six months for the catscan unless there is something leading them to check it sooner. six chest , four sinus, mris, nuc test only a few xrays though. I was joking in the begining with my husband about begining radioactiive and a very hot mama!!! That and my weekly dose of radation. The Imaging place knows me well.
The weak and but racing mind feeling is frustrating , I agree. I want to do so much and think of so....................... much to do but the energy and time are out of reach or just not possible it seems. Somedays I can move it and hustle but other days poop. It all depends on the dose I am afraid. Thats what I have found so far with me. Wacky mother of four working and running like a nut. Then sit down and fall asleep. Just kidding not always. Your body will tell you when you need to slow down and if you dont I swear it goes to sleep on you in the weirodest places and times. Be careful!!!!!

Sangye
02-04-2010, 02:47 PM
Onatreetop, please let JH decide on the frequency of CT scans. Having scans every 6 months is not standard. They shouldn't do them unless they specifically have concerns.