Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Hello, I just got home about an hour ago! Woo hoo!!!
Thank you all sooooo much for your well wishes and OH MY GOD, for the BEAUTIFUL FLOWERS!!! That was such an amazing surprise. They are the most beautiful flowers ever, the nurses were all coming in and oohing and ahhing over them, they are absolutely gorgeous! I took some pictures of them and will put them up on Lymefriends.
I felt guilty through my whole stay that so many of you going to the ER with cardiac symptoms, shortness of breath, chest pain, palpitations, and continually get turned away, and here I land in there for 3 days for those very symptoms without even trying. I kept wishing I could pick one of you who would really appreciate all the cardiac workup to trade places with me!
As Luvdogs said, on Saturday I went to the hospital to get my Coumadin level drawn, and as I was standing at the registration counter I started to feel short of breath. I was bent over the counter and Blake went and got me a wheelchair (no biggie for those of us with Babs) but nurses seemed to appear out of nowhere. Because I also had some nausea and sweatiness, they whisked me off to the ER, where to my surprise they admitted me.
So I spent three days getting all kinds of cardiac workups, on a holter monitor being continuously monitored in the ICU, on nitroglycerine patches, and finally having a stress test (I finally get to post on the hikers and walkers club today!).
Somehow I inadvertently failed the stress test post quiz. If only I'd had a clue... though I did fine on the stress test, when the cardiologist asked if I had felt any "tightness" in my chest, I said "well, just when I was getting out of breath, the normal kind of tightness you get when you start to get out of breath."
WRONG ANSWER. Evidently in his book that isn't normal. Next I was whisked off to some big machine where they did a CT scan type thing, myocardial perfusion test I think they called it. Then they said I had to stay another night since I'll need another one tomorrow.
Later on the Hospitalist came in and said I could go home tonight and come back tomorrow for the test on an outpatient basis. So yahoo, I am home.
As far the blood clot goes, as mentioned, the new Hematologist I had made an appt with was on this weekend at this hospital and followed me the whole time. She called and spoke with the Hemahole I saw last week, got all the records from him, and on top of the 13 vials of blood he drew she had another 10 drawn today. So there is no question I will have a VERY thorough workup of whatever clotting issue I may have, hopefully then allowing me to get a line placed again with whatever blood thinners I will need to make it work.
She said I would probably be on Lovenox and not Coumadin since it does not interact with many of my meds like Coumadin does. She does not feel the heplock is an issue, so despite the fact Dr. Horowitz recommended stopping the IV Rocephin, I plan to go back on it tomorrow. They did give it to me while I was in the hospital, so I have not missed a dose.
She did do another ultrasound of my arm, and great news, the blood is flowing again! The clot has dissolved enough to have opened up the vein and allowed blood to flow through again. Tomorrow I have to get blood work then she will let me know what to take for meds. My INR was up to 4.2 so I was way over anticoagulated, so I haven't had Coumadin or Lovenox in three days now.
Now for all the collateral damage....the CT scan they did of my chest, etc to check for pulmonary embolisms (which I did not have) DID show two nodules in my right lung, of "ground glass appearance," one 9 mm and one 3 mm. These were NOT there when I had the CT scan on January 30th just before my PICC was pulled. I don't know what it means, but the doctor said had they been there on January 30th, she wouldn't be too worried, but since they just appeared that quickly I need to follow up right away on those.
Also, the CT scan showed spots on my liver, spleen, and possible gallstones. I did have an abdominal ultrasound about two months ago, which revealed a cyst on my liver (no one ever mentioned this), but not the other two things. So I need to get another ultrasound of my abdomen.
So, the Accidental Patient is fine cardiac wise and blot clot wise but has all kinds of other Accidental Findings which will now become a full time job to follow up on.
I have to say, I was at a small community hospital, and NEVER ONCE did I even so much as hear a quack, so thanks for writing ahead Tincup.
Not one doctor, nurse or anyone rolled thier eyes or ever said there is no such thing as chronic Lyme. They took my word for the tons of meds I'm taking and doses and got me everything (they even managed to get Mepron!) and they never questioned a thing.
In fact they were all very sympathetic about my condition, and I got a chance to tell the docs and nurses over and over what they were working me up for was simply a bunch of Babs symptoms.
Now, as long as someone tells me all these funny spots are common with Lyme and I don't have metastatic cancer I'll be just fine!!!
Thank you again for all your well wishes. Blake printed them out and brought them to me in the hospital last night and it just made my night to read them. I read them over and over.
I have no doubt that I am out, my clot is smaller, and my heart is fine thanks to all your prayers!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Tracy,
I'm so glad you are home, but am glad you were able to get some help. Awesome news that your clot is getting smaller!!!!
I hope you can get another picc again for your meds.
You've just been through the wringer in the past couple of months, geesh!! I think you are due to start REALLY getting some good healing results now!
So glad the hospital was receptive to Lyme, that's terrific!!!
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....Sure glad to see that post. We were all worrying, but we knew you'd be OK...just hope you can get back on IV soon.
hugs
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks so much for the update. Great news!!! It must be so nice to be home again.
I'm really glad you finally got to a hospital that paid attention to your situation and are following up on all the findings.
I'm so glad the gall bladder stuff was found now since you will be on IV rocephin. Hopefully you can avoid having your gallbladder out.
Via my herbalist/muscle testing, I was on a fat digester while I was on IM generic rocephin. My herbalist didn't know a thing about the drug but picked up on the fact that I wasn't digesting fats very well.
Maybe consider something for fat digestion while you are on rocephin. I was taking a product by Nature's sunshine called hi-lipase. Anything to save stress on the gallbladder might help.
Take care and we'll be waiting to hear of any news on the nodules and other issues.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Glad to hear you're OK (?), I hope that discovering these Accidental Things will make your continued recovery possible and not let them show up as surprises later.
-------------------- Symptom Free!!! Thank you all!!!!
posted
(((((((((((Tracy))))))))))))))))))))) WELCOME HOME!!!!!!!! xoxoxoxoxo
Posts: 588 | From Rhode Island | Registered: Jun 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
So relieved you are doing well.
I love the hemahole reference.
Okay, now I am not a doctor or a nurse,
But my neighbor who is a RN with Lyme
Had an infection in her lungs that left a spot.
CT done....inconclusive, however, it diminished greatly on doxy.
Co-incidence? I think not.
Also had cysts all over her liver.
Mostly went away with Lyme treatment.
Co-incidence? I think not.
She started having tons of pre-ventricular contractions,
Palpatations, etc. Saw a cardiologist who did a stress test on her.
Said she had suffered a mild heart attack in the past.
She didn't even know it.
Started a beta blocker. No more heart issues.
Bartonella therapy also helped with those.
I think we are a medical mystery.
It is kind of a game of seek and find.
I am sure if they looked hard enough,
They'd find all types of abnormal stuff with me too.
That's why I don't let them look (unless I have to).
Sending you prayers that your nodules go away.
God has already answered a couple of mine by getting you
Into that hospital and getting you home.
He sure works in mysterious ways.
Keep the faith.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I have the nodules with ground glass, specialist said it looks like histo.,and I know of a fella who got worked up for what they thought was lung cancer and they discovered he had a raging case of neurolyme. So don't worry till they tell you to worry. I think it goes with this disease. If they bothered to look they would probably find it in all of us to some degree. Hope your well soon.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
welcome home tracy!! so glad you're (relatively) okay and that the ducks didn't quack! amazing! <3
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I just did some research on the "ground glass nodules" in my lung; crap, it doesn't look too good. It looks like there is a fifty percent chance it could be lung cancer......even more concerning that they were NOT there on my CT scan just five weeks ago. The "spots" on my liver and spleen are not making feel very reassured, either.
Truthfully, if I'm going to die, I could totally accept it, because my quality of life is so poor and I've done so many things I have wanted to do in my life.....but I have kids and a husband who would be devastated. I can't imagine what this would do to them.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Glad to hear you've been sprung. Ground glass and nodules can sometimes be a part of pulmonary fibrosis. We believe my husband's pulmonary fibrosis was caused by Babs. The pulmonologist didn't believe it could be reversed and we have reversed some of it with treatment.
Watch out for the prednisone/cytoxan they typically try to treat with.
Posts: 984 | From San Diego | Registered: Nov 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tracy,
Glad you are home. Sounds like you had quite the adventure. Get some rest and take it easy. Hospitals and testing are exhausting.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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bettyg
Unregistered
posted
she's BACK! welcome; wow, you really know how to run up some medical bills in hospital and so glad you do have insurance!
wow, talk about testings done; but sounds as if they were worth while to stay on top of other accidental things possibly being found.
when is your next appt. to check out this stuff? perhaps you said so; you had a lot to tell us.
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posted
When are you going to know more about the spots in lungs etc??? I am thinking of you and wish I could come visit... Let us know how you are, ok?
Posts: 588 | From Rhode Island | Registered: Jun 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Thanks for your comments. I am just far too exhausted to even be worried. I feel today like the life is sucked right outta me. I just woke up and was truly too exhausted to go get my Coumadin level drawn today or my second part of my stress test, OR my heplock put in....how do you do all this when you are too sick to move?
I did schedule my heplock for tomorrow and will get my Coumadin level drawn at the same time. Not too worried about the second part of the stress test since obviously my heart is the least of the problems. My PCP is seeing me Friday and trying to arrange for me to have the abdominal ultrasound before then to check out the spots on spleen, liver, and possible gallstones.
I tried to make myself an appt with a Pulmonologist but they want a referral from my PCP. I just want to go to a good one. Guess he will have to lead the way.
The only thing at all that does really concern me is the ground glass nodules in the lung. I just want to know what they are. But again, believe me, I am too fatigued and have no energy to even feel worry or anxiety about it.
The spot on the liver is most likely a cyst they said, which is common. The gallstones are no big deal if they aren't bothering me, and they aren't. I am on Actigall. Not sure about the spleen spot.
Tomorrow I get my Coumadin level checked, new heplock put in...and need to schedule that CT I was supposed to have today but missed it.....oops. It's the second part of the stress test.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Tracy' >>>>>,
So glad that you got to come home hon'. I'll be watching for updates and continuing to pray for you!
Love from Silverwolf!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Unfortunately though, when a person is worked up so thoroughly like that, lots of times incidental things like what was found on your scans is found on almost everyone's organs that a person would otherwise never know about.
I had a routine Lumbar MRI done about 2 years ago for some low back issues I was having, and the tech made a note on my report of an incidental finding of a tiny cyst within my liver.
Of course, I freaked out, wanted more opinions-I wound up having an abdominal ultrasound ordered by my PCP to make sure the spot was a cyst and not cancer, and the report from that came back inconclusive for a cyst. I freaked again! I Asked if it was cancer, and she said "probably not, but to come in again in 3 months to redo the ultrasound." So I waited 4 stressful months, then-
I went to my gastro, who I have complete faith in, and he reordered the ultrasound for me. Had it done, and this time, he called me and said not to worry- it definitely was a cyst, they could see it clearly this time, it hadn't grown in 4 months, was very tiny, and very, very, common, especially in women. I've forgotten about it ever since.
As far as your other pending test results, try not to use up any of your energy worrying right now. Use it on your kids, Hubby, and healing yourself now. Whatever will be will be-easy for someone else to say, I know. If it happens to be lung cancer, I've heard through friends of a few people who had it, fortunately caught it early,and are fine.
Please keep us posted on how you're doing-I don't post on here as much as others on this board, but I at least try to browse a lot of the posts everyday and reply as much as I can.
Keep positive- Dawn
Posts: 64 | From rock tavern ,new york | Registered: Aug 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Dawn, Thank you so much, what a nice post. I am not fretting, I am so exhausted I truly don't have the energy for one ounce of anxiety. I have slept constantly since I got home, save for a few hours this afternoon. I am totally wiped out.
I haven't been much of a worrier the last couple years, though I used to be. I think it's called "adrenal fatigue", LOL, no cortisone to give you any stressed out feelings!!!
The spot on the liver is definitely the least of my worries, they did find it referred to as a cyst on an ultrasound of my abdomen done about 2 months ago.
I agree with you, if I do have lung cancer it has to be very early, because these two nodules were not there 5 weeks ago. So even though it's bad that they are fast growing, it's good that they are new, right? That's what makes sense to me.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Tracy, I had spots identified on XRays and MRI in the past several years. They were found on my brain and especially my lungs.
I've suffered through the "antimicrobial chemotherapy" and I am now doing great. I bet the junk found on the imaging is gone. More importantly, I am feeling well...the best in seven years.
My point is that there is hope for you. You've learned so much through this terrible chapter in your life, and it will help you out of this latest situation. You're smart! You'll figure it out!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
About 4 yrs ago I got the phone call a few days after having a mammogram. Unknown mass in left breast. Scared the crap out of me.
Went back so they could twist that breast everywhich way they could. Smashed it. Wanted to make sure they got a great pix of this mass.
Decided most likely not cancer. Would watch it every 6 mths to ensure no changing or growing.
I said then that if they did a complete body CT scan of my body they would probably find those masses (?) all over my body.
I just knew that it was due to my illness of lyme & company and not the "c" word. The mammograms went back to 12 mths, they still consider this now smaller mass probably not cancer.
They are no longer worried about it. This month when I go again, I'm going to ask specifically if it's even showing up anymore.
I, as you also know not everything is lyme & co related. But please don't think the worse. Try to not stress yourself.
I hope you find the explanation soon on these lung, and body organ unknown.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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