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Date of last update: 10/20/2017.

Forum Name: Clots & Anticoagulants

Question: Pulmonary Embolism and shortness of breath

 katmo102 - Sun Jan 25, 2009 2:39 pm

I am a 48 year old female, with CREST and thyroid disease, recently hospitalized for bilateral PEs and bilateral DVTs. My symptoms at the time were primarily shortness of breath, with some chest discomfort. CT scan w/contrast confirmed PEs, and also indicated a mass in the lower left lung. Bronchoscopy performed, and ruled out tumors or other malignancy. Will follow up in 2 months with CT. I have been on Coumadin 5 mg. therapy since being released from hospital.

I had an episode this past week, with shortness of breath (not as significant as when hospitalized), dizziness, and sharp pain in my upper right chest area. I went to ER, and had x-ray and CT w/contrast. I was advised that no clots were evident in my lungs, heart not under any strain, and INR was 3.9. My INR was 6.0 the day before, when I went to coumadin clinic for first time. Was advised to stop coumadin for 2 days, then 1/2 tab for 2 days and will follow up tomorrow.

My concern now is that I am still having shortness of breath, with any kind of activity, even just getting up from sitting position. This is worse than when I went to ER 3 days ago, but not the gasping type when I was initially hospitalized. I also have a feeling in my chest of ... chest swelling, best I can describe it. Its not painful, but really uncomfortable, and my heart seems to beat harder when this is happening.

Is this normal as a result of prior PEs? or could I possibly be having an anxiety attack, which I've never had before, but I am really nervous about this whole thing? or is it possible thats its related to my auto-immune disease, with inflammation in the lining of blood vessels, which I've been advised can happen?

I don't know when to be concerned anymore, and I can't keep going to the ER on a daily basis.

I thank you in advance for any advice, insight, reassurance you can provide.
 John Kenyon, CNA - Sat Feb 07, 2009 11:19 pm

User avatar Hello -

Neither the chest x-ray nor CT are definitive for PE, and since you have remarkable history including bilat., as well as dyspnea as cardinal symptom, and are now having dyspnea on even mild exertion, I feel it imperative that you have a VQ lung scan performed to be certain there is no clot present. While it is, of course, possible your symptom is due to anxiety, it is unlikely (especially since it is brought on by any sort of exertion). To have a patient in a clinical setting who has a concrete history like yours, describing the symptoms you describe, a CT w/contrast may have been expedient, but the problem has not resolved, the history is undeniable, and the test was not definitive. I can't imagine sending you home without a firm diagnosis and rule out/rule in.

Something is causing your symptoms, and I really don't believe it's anxiety, although you're probably feeling some of that right now anyway.

Please follow up with us here as needed and also keep us updated. Good luck to you.
 katmo102 - Thu Feb 12, 2009 10:20 pm

Thank you, John, for your recommendation. I will be seeing pulmonary doc next week and will discuss with him.

In the meantime, I thought I'd give you some updates.

In my last post, I failed to mention that I had recently been placed on blood pressure medication. My bp's were borderline, and not consistently so, but PCP recommended I try medication. I was started on Amlodipine 5 mg. and at the time of the ER visit, had been on it for about 2 weeks. A few days later, I wondered if maybe there were side effects with that medication, and after some 'net searching, I did indeed find that side effects were pretty much like my symptoms...dizziness, shortness of breath, racing heart. So I quit taking it, and I do feel much better. My bp does not seem to be affected by this, and has been in the 120's over 70's range..pretty normal.

My ongoing issue is still the shortness of breath. Today, I had an echocardiogram to rule out heart damage from the PEs and also a mammogram. This was performed mostly because on the most recent CT, it was noted that "occasional nodes are seen in the axilla bilaterally" and my PCP was concerned about that statement.

Also, the mass that was present initially, is still present. The final impression is "Persistent mass in the right lower lobe similar to previous study with extensive right hilar and mediastinal adenopathy. The possibility of a neoplastic process should be considered". That said, it was also noted that there was no significant change from the first finding three weeks prior. This mass is 4.1 x 2.2 cm. with irregular contours and is pleural based.

This also has my PCP (and myself, I have to say!) quite concerned, and she suggested that I request tissue sampling, as she didn't think that bronchoscopy would be sufficient for a pleural based mass. I will discuss this also with pulmonary doc.

So there you have it...basically, working on my deductible and trying to keep breathing while I'm at it!

I welcome any other suggestions, recommendations, insights you might have.

Thanks again.
 John Kenyon, CNA - Sat Feb 14, 2009 12:30 pm

User avatar You're very welcome.

It would certainly seem the amlodipine was causing some of the symptoms and clouding the picture. I'm glad you were able to discontinue it, feel better, and still maintain normal blood pressure. That's all good.

The CT finding, however, is obviously a concern. The nodes are, very likely, "persistent" because they are calcifying, possibly residue from the previous PEs. This often happens.

It's that pleural mass that's the most troubling thing right now (and of course the nodes could be related to that, as well, but I'm thinking that a chronological reading of events would make them more likely PE-related). It does need to be identified, and I'd concur that if it is a pleural mass a bronchoscopy (and, for that matter, a VQ scan) wouldn't yield much information, especially for the aggravation either would cause. A tissue sample of pleural space tissues might well be done via needle aspiration, which would be the least invasive and probably simplest approach, if the location is amenable. The fact that there is associated adenopathy (swollen lymph nodes) suggests nothing specific except that there's a process going on rather than this just being an inert lump. Could be neoplastic, could be cystic. That it hasn't grown is very encouraging.

There's a lot of history in your lungs, so this mass may well be some sort of oddball thing and I notice the careful choice of "neoplasm" instead of some more alarming word. This is good, because with a history of multiple PEs there's always the possibility of random odd things turning up that aren't malignant. Whatever it is, however, it's important to ID it soon as possible, especially since something is causing your shortness of breath. Now that the other symptoms have been resolved by elimination of a seemingly unneeded medication, the focus is much narrower, and the mass, whatever it is, has to be suspect. I'm thinking this could even be some sort of adhesion or undifferentiated tissue which, if pleural, could well impede normal breathing. It would need correction, but if this is the case it would be a lot less worrisome. The sooner you can know just what's going on down in there, the sooner you can relax -- regardless of what it is. It's the uncertainty that couses the greatest stress. Once we know what we're dealing with, our concentration is often remarkably concentrated and less scattered and anxious.

I'm of course hoping for a best-case scenario. I hope a tissue sample can be obtained ASAP, so you can know what to expect next.

Thanks for this update and the additional info regarding the BP med. Please keep us updated. Do your best to manage any anxiety over this (that will make breathing a little easier) and let us know what you find out.

Take care. My very best to you.
 katmo102 - Wed Feb 25, 2009 8:00 am

Hello John!

Hope all is well with you.

So I thought I would give you some additional updates, and once again, ask your advice, recommendations, insights.

I saw pulm. doc last week. He was still not greatly concerned about the mass, thinking it more clot related, possibly an infarction, and thought in fact that it was getting smaller. But he was concerned about the ongoing lymphadenopathy. He referred me to a thoracic surgeon for consult re mediastinal biopsy.

I met with thoracic surgeon yesterday, and we reviewed my history. As the story kept going, I could see that I really had his interest what with the initial episode, the CREST, the family history (sister with clots), the numerous long distance trips. Its funny how quickly a person becomes 'complicated'. Anyway, he reviewed my scans and hospital records, and in the end, he agreed that a biopsy of the lymph nodes was appropriate. He advised that he felt the lymph nodes would give a better picture than the mass, as they would be able to tell if there were infection, malignancy, or CREST related. He thought that if the mass was indeed an infarction, it would not return with anything, and would probably still have to sample a lymph node. So after some discussion, I have agreed to have this procedure done, and will have it performed on 11-March.

In the meantime, the shortness of breath has gotten much better on its own. But now I am having issues with the DVTs in my legs! I think I said in my first submission that I had bilat DVTs along with bilat PEs. I began having pain and discomfort in my legs about 6 days ago. I went to the ER 4 days ago, and the ER doc felt that indeed I was having DVTs. I had red streaking and pain on one leg, and pain behind the calf on the other leg. Both were swollen. He scheduled me for a doppler US, which I had done 2 days ago. I met with my PCP and she reviewed the report, and to no one's surprise, the DVTs are present. She wasn't able to compare with the initial scan that was done when I was hospitalized, but the thoracic surgeon was able to do so. He felt that these were the same DVTs as my initial episode and said they would take months to resolve most likely. They are below the knee, and in posterior tibial veins bilat, with additional finding of one in the l. saph. vein in the right leg. All fine and dandy. Except for the pain!

My left leg especially is bothering me. I have burning/itching type of pain along my left ankle, and its really red in that spot. I have redness and tenderness further up along my left calf. And both feet are really tender and painful to walk on. My left ankle is nice and swollen. I have been advised by all docs that its ok to be up and about, just 'gentle movement' and tylenol for pain. But how long will this last? And I forgot to ask docs, why would my legs bother me now...two months after the initial episode? And did I do something to bring this on? Also, I realize that I have to be aware of chest pain and SOB. I do have intermittent pains in my chest. Nothing constant or consistent even. Whenever I feel a pain, I take a deep breath and I figure if it doesn't hurt and I am able to do it, then shouldn't be a PE. Right? I just don't know when to be concerned about chest pain, and I know that I am more tuned in to pain I have, and its beginning to get confusing! I have pain everyday with the CREST, and mostly, I ignore it, unless its really in my face, but to have to pay attention....grrrrrr!

As always, I appreciate your input, recommendations, insights. Other than all the above, life is good here in the Land of Enchantment! Weather is awesome right now. Beautiful sunrises.

Thanks for your help!
 John Kenyon, CNA - Thu Feb 26, 2009 12:18 pm

User avatar "Complicated" can be a good thing as well, you know. :)

Boy, never a dull moment. The reasoning re: the lymph node biopsy vs. pleural mass is really sound. That makes perfect sense. With the, well, complicated history I wouldn't even hazard a guess as to what that might turn up, but feel malignancy would be pretty far down my list. I'll be anxious, though, to learn what it does show.

As for those ongoing (and acting up) DVTs, this happens. It really does. And it's very difficult to say how long they'll actually be there. The flare up of symptoms, the pain in particular, is probably due to a prone-ness to inflammatory processes, what with CREST and all that. The body generally doesn't like that sort of thing anyway, but with a tendency toward inflammation this may be exciting the autoimmune response, which will probably come and go til the thrombi are completely gone or have lost all their biological properties at least.

Since you already have experienced PEs from this problem it is important to try and be aware of chest pain, although since the breathing problem resolved without ever tipping its hand, and since we all really do have some random pains from time to time, it's probably going to have to be a fairly "in your face" sensation that gets the serious attention; otherwise you'll drive yourself crazy. It really is complicated, and I feel really bad about that, because it's enough to have to deal with what's known already, without listening for some Other Shoe to drop. That "take a deep breath" test should be a good rule to go by, and maybe it can become almost second-nature so it doesn't take up so much of your conscious attention.

Make the most of those beautiful sunrises! Spring's just around the corner here, and I'm sure all this will begin to resolve (if somewhat slowly) before long. That really is "the land of enchantment" by the way. I've seen a lot of beautiful places, but parts of NM just have some sort of almost mystical beauty. Maybe that's why, despite all the physical woes, you continue to maintain a great attitude. Whatever the reason, do your best to keep that switched on. It really does help.

I'll be looking forward to an update post biopsy, but please feel free to follow up here at any time.

My best,
 katmo102 - Mon Mar 09, 2009 11:03 pm


Hope all is well with you.

I am 2 days away from this mediastinal biopsy, and I have to tell you, I am getting scared. Not really so much by what the findings will be, but just for having this procedure done. Afraid of being under anesthesia...what if I don't wake up? Afraid of bleeding issues...what if I have an internal bleed? That kind of thing.

I have decided that I really do not want this problem! I don't want PEs or DVTs or CREST. I am really ready to be done. So I'm believing in miracles and hoping for one of my own.

I wanted to tell you that the results of the echo show mild pulmonary hypertension. Pressure in the right side was 48 mm hg. This I imagine will be a mystery as to why it developed, since it could be from PEs or from CREST. Either way, I wonder if this is the cause of the shortness of breath. And if its normal for it to come and go. I haven't had a chance to discuss this with my PCP yet, but will ask the thoracic guy about it on Weds. And of course, asking your opinion!

My legs......well. In some ways they are much much better. But since yesterday, my calves have been tight and crampy. As if I had done too much exercise and strained them. I haven't. Presuming this is still from DVTs, and I guess I have to believe that they're nothing new. Just in retrospect, before I was dx'd with PEs, I did have some tight crampy calf pain that I just presumed was from walking up and down steps.

Today, I am having sharp pains in my chest. At one point, the pain even radiated to my jaw. Really felt more like a spasm of some sort, and I was able to take a deep breath with no problem. Thinking I am having some esophogeal spasms. I believe nerves are the issue.

I'm just scared of myself, John. I'm pretty sure thats normal. And as the time gets closer to having to go to the hospital, its just getting a little worse. I have never had any problems with anesthesia before, so no reason to really believe that I will now, but I wish I didn't have to do it. And I know its my choice, and if I really didn't want to, I don't have to. But I need to finish this part of the story, so I'm gonna do it regardless of myself.

Thank you in advance for letting me vent. You have been so very helpful and I appreciate it very much. Perhaps my problem is in part, due to the moon. I have always thought of myself as a 'lunar chick' and its just about full!

I will let you know what happens post biopsy. Again, thank you so much!!

 John Kenyon, CNA - Thu Mar 12, 2009 10:44 am

User avatar Hi Kathy,

I was just notified of your latest post, and if I do the math right, I suspect today's the day of the procedure, so a lot of what I say will probably be moot by the time you read this, but still -- I want to say a few things.

First, of course, the overriding issue, which is fear of the procedure, fear of something going wrong, fear of having no control, fear of yourself, even. It's all more than normal: it's natural as well. For all the easy advice dispensed by clinical people, we each are generally afraid of all these things, which is why (and this should sound really weird, but think about it) I have always favored emergency surgeries -- for me, not for anyone else -- simply because when there's no time to think about what could happen, and when things are already bad enough to warrant quick action, well, that's where I function best on either side of the fence. The only time I've ever had elective surgery was when I was little, to have my tonsils out, and had to wait around for a few hours and almost went crazy. The other, much later, much bigger stuff? Pretty much like when the bells ring in a fire house. You just go with it. So I can really feel for you regarding the anticipation. I don't know how some people manage so well with that. But then it's done, it's behind you, and it's amazing how quickly we move beyond that and back to why we had it done. Not without some soreness, of course. Biopsies probably carry the lowest rate of complications, and the anesthesia will probably be something "light" anyway. So many of them aren't true anesthesias anymore like those used in major surgical procedures. But you'll have done all that by now most likely, so I will be eager to hear your account of it all, and most of all to learn what the doctors find out.

And of course you're ready to be done with all this. Who wants that? You've been extremely good through all this and I think no matter what the findings, your attitude is going to probably cause you to enjoy a better prognosis than someone who holds it all in or someone who feels inordinate and irrational fears. You've done neither, near as I can tell. Sometimes "normal" is good, too. Usually it is.

You're very welcome. Venting is a big part of the process and hopefully this has been helpful to you. I'll be here, waiting to hear all about how it went and what you learned. "Lunar chick." There could be something to that. The timing couldn't have been much more, well, lunar. :)

My best to you. Be well.

 katmo102 - Sat Mar 21, 2009 11:29 am

hallo, john!

so i survived the biopsy, and all went well. i have this lovely incision on my neck that is healing really quickly. had a lot of bruising the first couple of days, but its almost all gone now. not too much discomfort, all in all.

i asked the doc if he saw anything black or nasty, and he said "i didn't see anything that made me say Oh Wow or made me panic" so i'm taking that as a positive statement! i will see him again on the 27th, and expect to have results that day. he seems to think that this will be auto-immune related. and i have to say, while i'm glad (and thinking positively about this) that there wasn't any obvious malignancy, relating it to the auto-immune disease is just as scary. but i will worry about that when i know for sure.

since the biopsy tho, i have been back to the ER twice! once because of the discomfort in my legs. i still have the DVTs and i had another doppler done on the 13th, which actually shows some improvement in comparison with earlier studies. i understand that DVTs are going to cause some discomfort with their 'lasting presence' but its really odd, to me anyway, that the pain i am having is in my thighs and behind my knees. the recent doppler indicates the DVTs are below the knee. so i presume this is referred pain? ER doc gave percocet and i took about 3 of those, and while they did seem to help my pain, they did a number on my brain! so i decided i didn't need them anymore.

i went to see my PCP yesterday, after talking to the surgeon's office. i noticed about 2 days prior, i started to have this weird little cough. then of course, the shortness of breath seemed more pronounced again. however, i could take a deep breath with no pain. so i knew it wasn't a PE, but something weird was going on.

PCP ordered chest xray and EKG. EKG came back abnormal, so she sent me back to ER for some stat testing....was hoping to avoid the ER all together, so that was a funny little jig.

anyway, ER doc repeated the EKG and compared with prior studies. had one in dec that was pretty normal, one in jan that was abnormal, then this one that was abnormal, but not as bad as in jan. so they drew some blood anyway to check cardiac enzymes. fortunately, that test was perfect. however, WBCs were up, so she decided to start on antibiotics (Zithromax) and sent me on my way.

which brings us to today, and i still have the weird little cough, but kind of feels like its breaking up, getting a little phlegmy. i have a feeling of tenderness in my back..on the right side. not constant. when i take a deep breath, i feel kind of ... sore, is the only way i can describe it. but not always. just now and again. so maybe i was headed from some kind of pleurisy or something. i don't know. back to that point where i don't know when to be worried and when not to be.

i think at this point, i'm just not gonna go to the hospital anymore. i'm really tired of that! totally cramping my social lifestyle!!

so there you have the latest, john. i will let you know what i find out from bx results. in the meantime, i appreciate any input you have regarding the leg pain and the weird little coughing stuff.

hope all is well with you. its a beautiful day once again in the Land of Enchantment. seems spring is here to stay.

 John Kenyon, CNA - Sat Mar 21, 2009 9:36 pm

User avatar Hi Kathy,

So good to hear from you and to know that the news is mostly good, if indefinite, and the initial impression of the biopsy sounds promising. If I had to choose between a malignancy and autoimmune problems I'd put my checkmark next to the latter, since it's generally a more predictable type of problem. Autoimmune diseases can be a royal pain -- sometimes worse than that -- but most often they can me managed well and be reduced to just a nuisance. Malignancies -- well, they tend to leave an emotional scar and lingering uncertainty even when they are relatively minor. But yes, one thing at a time.

I'm glad the biopsy site is healing nicely and that you survived. :) The subsequent thoracic infection may well be related to that, it's entirely possible, and this is something that we can only do so much to avoid. Again, though, it is something that should be manageable and even fixable. It does sound pleuritic from the way you describe it, so it's probably somehow related.

Then there's the pain upstream from where the thrombi are located. It's entirely possible that is referred pain, since the entire length of a deep vein is innervated by one trunk line. It does make it difficult to stay clear on exactly what's happening and what to do about it, and I empathize very much with that. I can hardly blame you for choosing to stay away from the ER, as it often is the beginning of more stuff that can just wind up going in circles. Of course that being said, I still hope if anything truly unusual and/or disturbing surfaces, you'll go in anyway. It's a fine line, a difficult call, but you know your body and what's relatively normal better than anyone. It's one of the "gifts" of chronic physical problems. We get to know our somatic selves a little too well.

I'm so glad spring, which is official at last, has really arrived there. It must be beautiful. We're still having the March "tease" here, but it's getting nicer every day. Sunday promises to be at least in the 60s, and it should just get better from there. You have a wonderful rest of the weekend and I'll be looking forward to the next update.

My best to you,
 katmo102 - Sun Mar 29, 2009 9:49 pm

hallo John!

hope all is well with you.

myself....i am feeling pretty much like crap, thank you very much. ; }

i did not make it to abq for bx results on friday. when i thought spring was here to stay, i thought wrong! we had snow early that morning and traveling conditions were pretty rough so decided best to just stay home and rescheduled to tuesday.

in the meantime, and hopefully in a nutshell, my legs hurt, my feet swell, i have this nagging cough, i get short of breath with the least bit of exertion, my chest hurts now and again tho i can take a deep breath with no pain most of the time, i have fever off and on, my nose is stuffy and bloody, my shoulder hurts, i have a pain in my forearm that wasn't there a couple days ago, and waaa waaa waaa. on it goes.

so i've been trying to give myself a good talking to, and thinking a pain pill might not be a bad idea. took tylenol already for the fever. done with antibiotics and not sure they did anything. but couldn't of hurt, i think.

anyway...thanks for letting me rant for a moment. promise not to make it a habit...or break a habit perhaps.

i wanted to ask if you have ever heard of a supplement called Nattokinase? my father, a 78 year old mostly healthy "don't believe in doctors" kinda guy has been reading up on this stuff and is convinced that its exactly what i need to rid myself of the clots in my legs and will get me off the poison coumadin, tho i keep telling him i'm not a rat, so its not hurting me so much.

this stuff is used quite a bit in japan, if i'm not mistaken and is initially derived from the soybean. doesn't appear to be many studies done on it, but i have found several websites where people are chattering about it. some say their docs recommend, some say their docs know nothing, some see naturopath docs. most so far seem to have positive feedback.

what is kind of starting to get my interest about it, is that it can be used in conjunction with coumadin, with appropriate follow up. supposed to break up clots within hours.

i was wondering too, if you know if coumadin can cause shortness of breath? i honestly am at a loss for that one. my chest appears clear but just walking to the bathroom and back is an effort.

ok...thats all the questions i have for now. as always, i appreciate very much any input, advice, thoughts from you.

the incision in my neck has healed really remarkably quickly. there was extensive bruising the day i came home, but its almost all gone now, and there has been no problems with that at all.

will let you know what i find out on tuesday....if nothing else, to finish the story. thank you very much again, john.

 John Kenyon, CNA - Tue Mar 31, 2009 12:31 pm

User avatar Hi Kathy,

First off, I'm so sorry you're feeling so punk! That's awful Seriously, you sound like you have a classic case of The Miseries. So many possible causes for all that, and probably a combo of lingering infection and perhaps some clot-related stuff. A pain pill does sound in order, would have to be opiod because of the coumadin, but that's OK, especially if helps. Plus isn't a late cold snap and/or snow just the worst? Makes everything feel worse, I think. Amazing. But we know (look at the calendar) spring is actually here, it's just such a big tease (it always is here, so I can relate for sure).

I have heard of nattokinase, long story behind that, it's been around for centuries and the Japanese swear by it. There have been, by reason of inertia, very few "respectable" studies done on it here, but since a lot of doctors are starting to integrate alternative medicine into their practices, you may have some luck with this -- and it would require some oversight so long as you're on Coumadin already. I personally feel it has great potential, but of course wouldn't dare recommend blindly. Get your doctor involved and maybe this could turn out to be a happy surprise for you. Worth a shot at least.

As for Coumadin and shortness of breath, I have compiled a good deal of anecdotal evidence -- patient complaints -- that correlate with this, but no one has advanced any convincing theory as to why it might happen, so it's been dismissed. Still, there's an awful lot of people out there with a similar complaint and nothing else to hang it on. I wish someone would look into this more thoroughly because it's in such common use and I've heard this so many times. So yes, it's a possibility, but I have nothing with which to back that up.

I'll be looking forward to hearing how your appointment goes and wishing you much better health real son. Feel better! There, that should do it. :)

Take care and I'll be looking for your update.

 katmo102 - Tue Mar 31, 2009 10:32 pm

ah John.

thank you as always for your kind words and votes of confidence and information and advice. it helps me so much to put things in perspective.

well, so. i met with the thoracic surgeon today. i am trying to contain my terror. i don't, i can't, really, accept the diagnosis. which is metastatic adenocarcinoma. the doc was surprised at the diagnosis, as he really hadn't expected such from the way it all looked. but then again, i suppose thats why they do sampling anyway.

he explained that adeno indicates a glandular type of disease, and could be esophogus, stomach, intestine, colon, breast, pancreas related. i asked if he thought my thyroid could be the cause, as i have had some really high anti-thyroglobulin tests (over 5000) but he didn't think so.

he was very good about it, advising that the best thing would be to get to oncology as soon as possible for further testing including blood and scans to find a primary tumor, if in fact there was one. i asked if perhaps we could have the tissue read again, and he agreed to make a phone call, but thought we should move forward in the meantime.

of course, i agreed to that, as i told him that even tho i cannot accept the diagnosis, i know its prudent to rule out or find out as much as possible about the whole thing.

i asked him about detoxing my lymphatic system, and he didn't look at me sideways or anything, but again deferred to oncologists. i will be seen at the m.d. anderson cancer clinic in albuquerque, and he advised that they were very very good. i, in fact, read about them online, and am pleased to note that they also have natural, spiritual, and traditional protocols for treatment. i think i will want all of those, should it come to it. it turned out, they called me and asked if i would come in tomorrow and of course, i agreed. i'm feeling like the sooner i know what to fight, the sooner the fight can begin.

i am praying hard and trying to keep the faith. i don't feel like i'm in danger. i hope thats a good thing. the doc said we were not going to panic. and i think thats a good thing too.

i did tell him about the twinges and aches and the shortness of breath, which all seemed to be exacerbated by the procedure. he seems to think those are probably related to enlarged lymph nodes. i seemed to think they were related to the procedure, and things getting irritated. ah well. i suppose in the end, it doesn't really matter.

so i will keep you posted on what happens from here. apologies for being weird tonight, but trying hard to be positive, and not scared.

thanks again, John, for your reassurances and your advice.

 maidenNM - Sun Apr 19, 2009 10:05 am

Hello. I just wanted to say that my sister died on April 16. the clots in her lungs were not going away and instead slowly suffocating her until her heart could no longer take it. I am Kat's sister. she was so scared till the very end. She did not want to die and prayed daily for her miracle. I will forever miss my sister. Thank you for your advice and insight as she found comfort in coming to this site. She felt like she could ask her questions and verbalize her fears, unfortunately her worse fears, as well as mine, have come to pass. She breathes divinely now with no effort and no pain.
 John Kenyon, CNA - Sun Apr 19, 2009 11:51 am

User avatar Hello --

For some reason I didn't get a notification of this last post of Kat's til just now, and am feeling just beyond anything I could possibly put into words. I feel I will likely refer to her in the first person for some time to come, because this is a spirit that nothing can kill, Kat has been and remains a powerful presence, but I realize, in the midst of very powerful feelings of denial, that we won't be hearing from her here on the forum anymore. I just wanted to express my profoundest sympathies to you and the rest of her family because there can be no doubt she will be missed terribly. If she is here (and she most certainly is) then I can't even begin to imagine the sense of loss there, where it is three-dimensional and all the time.

Thank you for your very kind post letting us know, and I, for one, share your certain knowlege that "she breathes divinely now, with no effort and pain." I would only add to that also no more dread -- ever.

We meet a lot of brave souls here on this site, but I don't think any more brave - and honest -- than Kat has been during this ordeal. We are better for having known here, even in this very limited way. I feel I have lost a dear friend.

Again thank you and again my deepest and most profound sympathies.

John Kenyon
 maidenNM - Tue Apr 21, 2009 7:59 am

Thank you so very much John.
Her memorial service will be held this evening 4/21 at 6pm. Her cremated remains will be taken back to a final resting place in Calif where she spent most of her adult life and where her 2 daughters continue to live. Gonna be a long day, but thankfully she's been with us the whole time. I had the privilege of getting to take care of my sister, as a mortician, it's what I do, so I could have it no other way. I tell you that because I want everyone to know what I know to be true. She IS okay. She DID get her miracle. She told me that. We were all praying for her healing and we all said we'd gladly suffer for her wellness and now we are and now she is well. Nothing has changed between my sister and I. She is as here now as she was a week ago with the exception of that poor broken body. I've discarded that for she no longer needs it. This is our faith and now we've been given the humble honor of living our faith. My sister knew her angels and tho she was fearful of the initial journey, who wouldn't be, she still laughs and jokes and fills our hearts.

Thank you again.
 John Kenyon, CNA - Tue Apr 21, 2009 11:38 am

User avatar You are so very welcome.

This note is especially appreciated because in some odd way this whole thing has been rather miraculous, and I'm gratified to know just how strongly this tie binds those who choose to let it. It so happens I share your thinking in this regard, and so your having confirmed this is like a welcome bit of sunshine. Bless you and all Kat's family and friends. and thanks once again for having helped close this circle. It means a great deal.

My very best,
 iceman41 - Wed May 20, 2009 8:13 am

Hi I had a p.e. about a month ago and am on sick from employment is as a frier in a fish and chip shop.I am on warferin at 7.5 mg daily.
i have a ' sick note' which states light duties only 2 weeks i have been told by my employer that this is infact not a sick note and that its a note to return to work on light duties but there is no light duties in the environment.therefore he will not pay me sick pay can a gp give me a sick note stating that i am not well enough to return to work.
I have managed to stand for 45 mins at the most but i have to stand for 9 hours a day plus half hour lunch wher i can sit but this is the only time i have a break so i know i am not ready to return to there any advice that you can give me reguarding me returning to work.
How long do you think i should be off work i have said at least to the end of the month.My employers have said take as long as i need to to recover.My gp has said that it will take at least 3 more weeks for my lungs to be back to how they were before the p.e.

thank you

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