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Hi everyone.
I haven't been on the computer much in the last 6 months or so because I've not been feeling so hot, and I've been afraid of a diagnosis and didn't want to have a lot of negative speculation on my problem.
The day before Christmas, I began coughing up blood. I didn't feel bad, didn't feel short of breath, just was coughing up blood. I rested a few days, then tried to go about my business. Normally, I work as a nurse in the ER and ICU areas. One might think I picked up something awful from one of the patients in those areas, but I knew the patients in the few months previous to Christmas did not have anything 'icky' that I might have caught. Besides, I'm pretty immune to most common illnesses after having been a nurse for 20 years.
I went to the doc and got some antibiotic pills and he told me to get a chest X-Ray and come back in two weeks if I was still coughing up blood. Neither of us were too worried because I take a blood thinner for a blood clotting disorder. I didn't "feel" bad, so I minimized it.
Two weeks later (at the end of Jan), I was walking from the hospital that I work in across the street to the parking death. I got extremely short of breath and was coughing worse. I made a detour and stopped in the ER to ask one of the docs to check the level of blood thinners in me (to see if it was too thin) and to do an XR. He did, and he came in and told me he was admitting me to rule out TB and pneumonia.
I ended up staying for 10 days on isolation. They ruled out TB and they treated me for bacterial pneumonia with heavy duty IV antibiotics, kept me on respiratory treatments, put a camera down my lungs (a bronchoscopy), and called in every kind of consultant they could think of. When I was discharged, all they could tell me was that I DIDN'T have TB, I DIDN't have either bacterial or viral pneumonia, and the inside of my lungs looked "inflammed." No diagnosis.
Keep this in mind...I have never smoked a day in my life. Not anything.
So...when I was discharged home, it was with oxygen continuously. A normal 'oxygen saturation level' on a healthy adult is between 92 and 100%. Mine was 84%. Not good. With the oxygen, I was barely 92%. Needless to say, I kind of rested most of the time in the following months, and went to MANY doctor appointments. I had every test they could think of doing...CT scans (several), XR's, VQ Scans, Echo Cardiograms, Doppler studies of my legs to rule out any new blood clots that may have gone to my lungs, and I saw many different specialists, primarily pulmonologists.
Still no diagnosis. They don't know why I am still coughing up blood, being short of breath, and wheezing. I've gone to two of the countries best hospitals and seen some of the best doctors.
At this point, they suspect something called 'sarcoidosis'. It is some sort of auto-immune disease. I've been on oral steroids for the past 5 months, which has made some of the lung problems better, but we have not been able to wean the steroids down. Taking steroids constantly is very bad for you...it can cause diabetes, brittle bones, and other problems. The only treatment for sarcoidosis is steroids. And the hope that it goes into remission.
Today I am going to the hospital again to get an open lung wedge biopsy. The leader of Emory Hospital's lung transplant team is doing it, so I feel confident that I have the best doctor to do the procedure. What I need is prayers. Prayers for a diagnosis so we can get this thing under control...and prayers that the diagnosis is not something worse than sarcoidosis (which is bad enough in itself). I'll be under general anesthesia and intubated, then they will go in and deflate one of my lungs (the problem is in BOTH lungs). They'll then take three wedge biopsy's in three different places. Then they have to put in a chest tube (much larger than IV tubing, and just a little smaller than a garden hose) to re-inflate my lung. It will stay in for a couple of days if all goes well. And I will be in a regular room (not ICU). I will hopefully be able to go home in a few days. Since it is the holiday weekend and I live 2 hours away from the hospital, they will probably end up keeping me until Monday.
I am to be there at 9am today (Thursday, 7/2) to get ready, but I'm not sure what time the surgery starts. I am a "to follow" case. That means the doc has a 7am case and I will "follow" that one when he's done. It could be at 11am or 4pm...although I rather have it sooner, of course.
I won't have computer access, but I will rest in the comfort of knowing y'all are praying for this to all go well. Needless to say, I haven't been able to work since January. Thank God I took out a short term disability policy when I started this job! My son, my daughter, and one of my sisters will be there with me. I also have a few nurse friends who will be in the recovery room to look out for me...and that's a great comfort! You know, us nurses are the very worst patients. I am especially since I work in ICU and I only see the sickest of the sick and all the things that have gone wrong! I'm trying to stay positive about this and let God work it all out.
By the way, I didn't mention it, but they say they have found NO evidence of a tumor or anything like that. There are just 'areas of consolidation, of "ground glass appearance" ' in both lungs that get better at times in one place, only to be worse in other places. Yikes.
Anyways, please keep me in your prayers today and for the next few days as I get this done and recover. That chest tube thing is one painful tube!
Thanks so much. I was reading the letters and emails y'all sent when my brother was in the hospital the other day. It helped my heart so much to read over those and remember how loving and supportive you all were...8 years ago....when he was burned. Can you believe it was that long ago?
hugs,
Robi
Page 1 of 1
For 6 months, I've been coughing up blood... prayers needed for open wedge lung biopsy and a diagnosis
MultiQuote
#2
krys 
- Do I have kids or did I read it in a thread?
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Posted 02 July 2009 - 03:44 AM
Robes, on 02 July 2009 - 02:04 AM, said:
Hi everyone.
I haven't been on the computer much in the last 6 months or so because I've not been feeling so hot, and I've been afraid of a diagnosis and didn't want to have a lot of negative speculation on my problem.
The day before Christmas, I began coughing up blood. I didn't feel bad, didn't feel short of breath, just was coughing up blood. I rested a few days, then tried to go about my business. Normally, I work as a nurse in the ER and ICU areas. One might think I picked up something awful from one of the patients in those areas, but I knew the patients in the few months previous to Christmas did not have anything 'icky' that I might have caught. Besides, I'm pretty immune to most common illnesses after having been a nurse for 20 years.
I went to the doc and got some antibiotic pills and he told me to get a chest X-Ray and come back in two weeks if I was still coughing up blood. Neither of us were too worried because I take a blood thinner for a blood clotting disorder. I didn't "feel" bad, so I minimized it.
Two weeks later (at the end of Jan), I was walking from the hospital that I work in across the street to the parking death. I got extremely short of breath and was coughing worse. I made a detour and stopped in the ER to ask one of the docs to check the level of blood thinners in me (to see if it was too thin) and to do an XR. He did, and he came in and told me he was admitting me to rule out TB and pneumonia.
I ended up staying for 10 days on isolation. They ruled out TB and they treated me for bacterial pneumonia with heavy duty IV antibiotics, kept me on respiratory treatments, put a camera down my lungs (a bronchoscopy), and called in every kind of consultant they could think of. When I was discharged, all they could tell me was that I DIDN'T have TB, I DIDN't have either bacterial or viral pneumonia, and the inside of my lungs looked "inflammed." No diagnosis.
Keep this in mind...I have never smoked a day in my life. Not anything.
So...when I was discharged home, it was with oxygen continuously. A normal 'oxygen saturation level' on a healthy adult is between 92 and 100%. Mine was 84%. Not good. With the oxygen, I was barely 92%. Needless to say, I kind of rested most of the time in the following months, and went to MANY doctor appointments. I had every test they could think of doing...CT scans (several), XR's, VQ Scans, Echo Cardiograms, Doppler studies of my legs to rule out any new blood clots that may have gone to my lungs, and I saw many different specialists, primarily pulmonologists.
Still no diagnosis. They don't know why I am still coughing up blood, being short of breath, and wheezing. I've gone to two of the countries best hospitals and seen some of the best doctors.
At this point, they suspect something called 'sarcoidosis'. It is some sort of auto-immune disease. I've been on oral steroids for the past 5 months, which has made some of the lung problems better, but we have not been able to wean the steroids down. Taking steroids constantly is very bad for you...it can cause diabetes, brittle bones, and other problems. The only treatment for sarcoidosis is steroids. And the hope that it goes into remission.
Today I am going to the hospital again to get an open lung wedge biopsy. The leader of Emory Hospital's lung transplant team is doing it, so I feel confident that I have the best doctor to do the procedure. What I need is prayers. Prayers for a diagnosis so we can get this thing under control...and prayers that the diagnosis is not something worse than sarcoidosis (which is bad enough in itself). I'll be under general anesthesia and intubated, then they will go in and deflate one of my lungs (the problem is in BOTH lungs). They'll then take three wedge biopsy's in three different places. Then they have to put in a chest tube (much larger than IV tubing, and just a little smaller than a garden hose) to re-inflate my lung. It will stay in for a couple of days if all goes well. And I will be in a regular room (not ICU). I will hopefully be able to go home in a few days. Since it is the holiday weekend and I live 2 hours away from the hospital, they will probably end up keeping me until Monday.
I am to be there at 9am today (Thursday, 7/2) to get ready, but I'm not sure what time the surgery starts. I am a "to follow" case. That means the doc has a 7am case and I will "follow" that one when he's done. It could be at 11am or 4pm...although I rather have it sooner, of course.
I won't have computer access, but I will rest in the comfort of knowing y'all are praying for this to all go well. Needless to say, I haven't been able to work since January. Thank God I took out a short term disability policy when I started this job! My son, my daughter, and one of my sisters will be there with me. I also have a few nurse friends who will be in the recovery room to look out for me...and that's a great comfort! You know, us nurses are the very worst patients. I am especially since I work in ICU and I only see the sickest of the sick and all the things that have gone wrong! I'm trying to stay positive about this and let God work it all out.
By the way, I didn't mention it, but they say they have found NO evidence of a tumor or anything like that. There are just 'areas of consolidation, of "ground glass appearance" ' in both lungs that get better at times in one place, only to be worse in other places. Yikes.
Anyways, please keep me in your prayers today and for the next few days as I get this done and recover. That chest tube thing is one painful tube!
Thanks so much. I was reading the letters and emails y'all sent when my brother was in the hospital the other day. It helped my heart so much to read over those and remember how loving and supportive you all were...8 years ago....when he was burned. Can you believe it was that long ago?
hugs,
Robi
I haven't been on the computer much in the last 6 months or so because I've not been feeling so hot, and I've been afraid of a diagnosis and didn't want to have a lot of negative speculation on my problem.
The day before Christmas, I began coughing up blood. I didn't feel bad, didn't feel short of breath, just was coughing up blood. I rested a few days, then tried to go about my business. Normally, I work as a nurse in the ER and ICU areas. One might think I picked up something awful from one of the patients in those areas, but I knew the patients in the few months previous to Christmas did not have anything 'icky' that I might have caught. Besides, I'm pretty immune to most common illnesses after having been a nurse for 20 years.
I went to the doc and got some antibiotic pills and he told me to get a chest X-Ray and come back in two weeks if I was still coughing up blood. Neither of us were too worried because I take a blood thinner for a blood clotting disorder. I didn't "feel" bad, so I minimized it.
Two weeks later (at the end of Jan), I was walking from the hospital that I work in across the street to the parking death. I got extremely short of breath and was coughing worse. I made a detour and stopped in the ER to ask one of the docs to check the level of blood thinners in me (to see if it was too thin) and to do an XR. He did, and he came in and told me he was admitting me to rule out TB and pneumonia.
I ended up staying for 10 days on isolation. They ruled out TB and they treated me for bacterial pneumonia with heavy duty IV antibiotics, kept me on respiratory treatments, put a camera down my lungs (a bronchoscopy), and called in every kind of consultant they could think of. When I was discharged, all they could tell me was that I DIDN'T have TB, I DIDN't have either bacterial or viral pneumonia, and the inside of my lungs looked "inflammed." No diagnosis.
Keep this in mind...I have never smoked a day in my life. Not anything.
So...when I was discharged home, it was with oxygen continuously. A normal 'oxygen saturation level' on a healthy adult is between 92 and 100%. Mine was 84%. Not good. With the oxygen, I was barely 92%. Needless to say, I kind of rested most of the time in the following months, and went to MANY doctor appointments. I had every test they could think of doing...CT scans (several), XR's, VQ Scans, Echo Cardiograms, Doppler studies of my legs to rule out any new blood clots that may have gone to my lungs, and I saw many different specialists, primarily pulmonologists.
Still no diagnosis. They don't know why I am still coughing up blood, being short of breath, and wheezing. I've gone to two of the countries best hospitals and seen some of the best doctors.
At this point, they suspect something called 'sarcoidosis'. It is some sort of auto-immune disease. I've been on oral steroids for the past 5 months, which has made some of the lung problems better, but we have not been able to wean the steroids down. Taking steroids constantly is very bad for you...it can cause diabetes, brittle bones, and other problems. The only treatment for sarcoidosis is steroids. And the hope that it goes into remission.
Today I am going to the hospital again to get an open lung wedge biopsy. The leader of Emory Hospital's lung transplant team is doing it, so I feel confident that I have the best doctor to do the procedure. What I need is prayers. Prayers for a diagnosis so we can get this thing under control...and prayers that the diagnosis is not something worse than sarcoidosis (which is bad enough in itself). I'll be under general anesthesia and intubated, then they will go in and deflate one of my lungs (the problem is in BOTH lungs). They'll then take three wedge biopsy's in three different places. Then they have to put in a chest tube (much larger than IV tubing, and just a little smaller than a garden hose) to re-inflate my lung. It will stay in for a couple of days if all goes well. And I will be in a regular room (not ICU). I will hopefully be able to go home in a few days. Since it is the holiday weekend and I live 2 hours away from the hospital, they will probably end up keeping me until Monday.
I am to be there at 9am today (Thursday, 7/2) to get ready, but I'm not sure what time the surgery starts. I am a "to follow" case. That means the doc has a 7am case and I will "follow" that one when he's done. It could be at 11am or 4pm...although I rather have it sooner, of course.
I won't have computer access, but I will rest in the comfort of knowing y'all are praying for this to all go well. Needless to say, I haven't been able to work since January. Thank God I took out a short term disability policy when I started this job! My son, my daughter, and one of my sisters will be there with me. I also have a few nurse friends who will be in the recovery room to look out for me...and that's a great comfort! You know, us nurses are the very worst patients. I am especially since I work in ICU and I only see the sickest of the sick and all the things that have gone wrong! I'm trying to stay positive about this and let God work it all out.
By the way, I didn't mention it, but they say they have found NO evidence of a tumor or anything like that. There are just 'areas of consolidation, of "ground glass appearance" ' in both lungs that get better at times in one place, only to be worse in other places. Yikes.
Anyways, please keep me in your prayers today and for the next few days as I get this done and recover. That chest tube thing is one painful tube!
Thanks so much. I was reading the letters and emails y'all sent when my brother was in the hospital the other day. It helped my heart so much to read over those and remember how loving and supportive you all were...8 years ago....when he was burned. Can you believe it was that long ago?
hugs,
Robi
Certainly I'll be praying.
Security is mostly a superstition. It does not exist in nature,
nor do the children of men as a whole experience it.
Helen Keller
nor do the children of men as a whole experience it.
Helen Keller
#3
kimberly
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Posted 05 July 2009 - 01:33 AM
You certainly are in good hands at Emory. Top notch doctors. I pray with you that a diagnosis and treatment is immediate.
"I dream of horses." National Velvet
#4
rascal
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Posted 05 July 2009 - 09:28 AM
Prayers absolutely!
Robes,I am sorry that you have been going through such tough times. As bad as it is to be sick, it is horrible when you cannot identify what it is you are fighting. Please keep us updated.
Cathy
Robes,I am sorry that you have been going through such tough times. As bad as it is to be sick, it is horrible when you cannot identify what it is you are fighting. Please keep us updated.
Cathy
#5
Mark Sanguinetti
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Posted 05 July 2009 - 08:19 PM
Hi Robi:
I will be praying for you to have excellent health and for all negative symptoms to pass away from your body.
I will be praying for you to have excellent health and for all negative symptoms to pass away from your body.
This post has been edited by Mark Sanguinetti: 05 July 2009 - 09:03 PM
#6
GeorgeStGeorge
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Posted 07 July 2009 - 07:32 AM
Praying here, as well. Fear not; you will be delivered!
George
George
#7
Watered Garden
- No mountains or oceans but the tomatoes are terrific!
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Posted 08 July 2009 - 07:19 AM
Robi, God healed me of sarcoidosis back in 1982-83. He is the same God Whose healing hand is on you now.
I pray and have confidence in your complete delivery from whatever is ailing you.
WG
I pray and have confidence in your complete delivery from whatever is ailing you.
WG
"We won't get fooled again!" The Who
#8
Dot Matrix
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Posted 09 July 2009 - 10:12 AM
Robi
I am praying
I am praying
"Life is short, Break the rules, Forgive quickly, Kiss slowly, Love truly, Laugh uncontrollably, and NEVER regret anything that made you smile. Life may not be the party we hoped for, but while we are here, we should dance".
Dot
Dot
#9
HAPe4me
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Posted 17 July 2009 - 09:33 PM
Yikes Robi!- I missed seeing this, and I am sorry. Figuring that prayers late are still prayers for the good, you have mine now. If you stop by, drop us an upadte maybe? Wishin you well, lady.
~HAP
~HAP
A candle loses none of itself by lighting another candle.
Children are a legacy to a time we cannot see.
Children are a legacy to a time we cannot see.
#10
Lifted Up
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Posted 28 July 2009 - 01:57 PM
Robi, I've also been very occasional at GS this year, but now that I finally know, I can add my prayers to the orhers. I may try e-mailing you to the latest addy I have, but that's not really important. Best to you.
#12
bowtwi
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Posted 29 July 2009 - 05:58 PM
Oh Robi, I'm so sorry to hear this news. Definitely count on my prayers too.
And I can't believe how thick the coffee is here either.
And I can't believe how thick the coffee is here either.
This post has been edited by bowtwi: 29 July 2009 - 06:00 PM
B - Better
O - Off
W - Without
t - the
w - way
i - international[size=4]
O - Off
W - Without
t - the
w - way
i - international[size=4]
#13
Robes
- Can't believe how thick the coffee is here
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Posted 31 July 2009 - 01:56 AM
Thank you, friends, for the prayers. The open lung biopsy went very well, no problems at all with the procedure, meds or staff. That's a great start. Actually, the surgeon said I was in so much pain during the surgery that he really had to sedate me almost more than they were feeling safe with...but...the good thing about that is the "Michael Jackson" drug, "diprovan" aka "propranol" is designed to give you a "retrograde amnesia". That means you may know what's happening at the moment and can follow some simple directions, but you forget all about it later. In this case, I forgot about everything completely...except for the day I went home! And, unlike Michael Jackson, I was safely intubated and on a ventilator for the surgery. That's the ONLY way that medicine is ever used in the hospital...and NEVER at home!
Off my profanol bandwagon...
So, what did they find? No cancer. That's good...and I didn't think they would find that. Basically, the biopsies did not grow out any "bug" or anything. Based on all the testing, the labwork, the CT scans, and seeing how I reacted to different medications over the past 6 months, and the fact that up until now I have been very healthy lung wise, having NEVER smoked and not even having been around a heavy smoking environment...the doctor says I probably have what they call Idiopathic Pulmonary Hemosiderosis.
What does that mean? I dunno...the doc said I may be trying to get some sort of auto-immune disease, like Lupus or sarcoidosis, but at this time, I am testing negative for them. Idiopathic means, "we don't know what causes it". Pulmonary of course, refers to the lungs. Hemosiderosis is the one I'm not really sure about, so I am going to google it and study about it. It basically is some sort of bleeding problem that, if untreated and not put in remission can cause permanent fibrosis of the lungs...reducing capacity a great deal until the end.
What will we do about it? Well, since I have responded fairly well to the high dose of steroids (prednisone) that I am on now, the course of action is to TRIPLE that dose for 6 to 8 weeks, and see if we can get it calmed down. I am still on oxygen, at home and everywhere I go, and have been since this started 6 months ago. I will stay on the oxygen, of course. I get real "oxygen starved" feeling when I do much more than be up for greater than 10-15 minutes. That time frame will definitely get better as we progress with the steroids.
The problem with the very high dose of steroids is the side effects. They can cause osteoporosis (so I will have to start taking a med to prevent that), it will cause diabetes, so I will start checking my blood every few hours and treating it with insulin (no, I'm not diabetic, but steroids make your sugar high and that can cause many problems). The steroids cause weight gain, not only from fluid retention, but from increasing your appetite. I've gained about 30 pounds since I started taking the lower dose 5 months ago! Yikes. Extra weight and fluid retention causes high blood pressure...I am usually very normal with my blood pressure. Yesterday I saw 4 different doctors and my blood pressure was as high as 197/86! That is incredibly high! I will need to go on something to reduce it, for sure. Hopefully, he says, all these problems may reverse themselves when I come off the steroids. Of course, excersize isn't a good option now...I have a garden hose size hole in my left chest/flank area, and several 3 inch incisions in various places on my chest, so no swimming for another month or two. And I can't breathe when I try to walk.
Finally, the pulmonologist wants me to get a bone scan (to check for osteoporosis and get a baseline), he wants me to see a rheumatologist (to keep an eye on the 'auto immune' possibility), a cardiologist (for the blood pressure and the funny, squeezing type chest pain that I've had 3 or 4 times during this process that radiated up my neck and that was very different from the chest discomfort before or after the surgery). I have to get an MRI of my back to find out why I'm having such bad low back pain and numbness in my toes. Damn! It's exhausting to do all this...I can only pray for strength...
I appreciate your prayers. It means so much to me to know I'm not alone in this..."if any two.." I cling to that. I am also very careful to guard my mind and thoughts and put things in my brain that comfort and reassure me. It's good to see some of my favorite friends here. Thanks, you guys. You melt my heart.
My mother has had a hard time dealing with me not wanting to discuss politics and the sorry state of the country during all this! She says I need to stay informed, etc. I had to sit her down and tell her that I wasn't interested in saving the country, or the world, right now because I am fighting to save myself! It's a conversation I never thought I'd have to have with her because she is a former Wayfer and has always reminded me to keep positive and talk to God in the past when I was going through hard things.
The last thing...is the chemotherapy. Although he says this is not cancer, he says this type of problem is sometimes responsive to
a chemo med called Azathioprine. He said we would start that after the 6-8 weeks of high dose steroids. I haven't even had the courage to look that medicine up yet so I don't know what it does or how it's given. It's probably something like Jim Martin had, or has had occasionally, for his Lupus.
The good news is that my son is back home. He came home a few months ago to help me move and to help me out. He decided to stay, saying he was going to go into the military soon, when I didn't need him here anymore. When I started to get a little better after starting the lower dose steroids, he said he'd stay until they did this surgery to make sure I'm ok. Now I'm not sure if he will go into the military. He may just stay here and start college and help me out. He has been so sweet taking care of me, stopping by my room every so often asking if I need anything.
Of course, my daughter is still living with me. Sometimes she's a great help...and sometimes she's tired of me! Oh well...! A 24 year old takes their social life very seriously, you know. And my sister comes over almost every day. At first to help me get into the shower and to be there in case I had trouble and fell (I have one of those dorky 'shower chairs' now), and to help me around the house. We moved at the beginning of May and she's been doing the unpacking while I tell her where to put stuff. She's been able to have a lot of time off from work and we are building a relationship that we haven't ever had. It is good.
Good gracious, am I ever glad I took out that short-term and long-term disability policy when I started at this latest hospital that I am working at. It gives me some peace of mind not to have to worry about money during all this. If any of you are wondering if you need insurance, whether medical ins. or any sort of disability insurance...DO IT!. TWI always discouraged that sort of thing and promised everything would be taking care of. BULL! It's funny how they managed to basically fire anyone who got sick or had needs. I'd gone for years without having insurance when I went to work for Emory Hospital, and a 'still, small voice' told me to check those boxes off when I was in orientation. It has paid off very well and given me a great deal of peace. Because I am on the oxygen and coughing up blood, I haven't been able to work at all. I still won't be able to work for quite some time not only because of the breathing problems but also because the steroids make you highly suseptible to any sort of infection...and working in the ER or ICU will not do!
Speaking of Emory Hospital, I'm not sure if I've ever told most of you that I work there. I mention it now because I am confident that I will get the best care in the country there. The surgeon I had is in the top percentage of his field in the nation. This Idiopathic Pulmonary Hemosiderosis (IPH) is rare and I know they won't drop the ball. Because Emory is a teaching hospital, they have the "baby" (new) doctors trying to out-do one another when they have 'neat' diagnosis'!
There I go again...finding the places where God continues to work in a situation even when things might otherwise look bleak. If that's a 'fault' then I'm glad it's one I have!
Y'all, please forgive me for spelling and grammar mistakes. I'm really tired and I don't want to take the time to proof-read right now....not that I'm sure it would even help! And please forgive me for not updating often...sometimes I just feel so profoundly exhaused that I can't make myself sit at the computer. I want one of those new tiny little laptops that I can sit in the bed with me!
Hugs to all, and please keep up the prayers...they are so vital, and so appreciated!
love,
Robes
p.s. Lifted, I got your email, my addy is the same. I'll write to you in a day or so. Thanks for writing!
Off my profanol bandwagon...
So, what did they find? No cancer. That's good...and I didn't think they would find that. Basically, the biopsies did not grow out any "bug" or anything. Based on all the testing, the labwork, the CT scans, and seeing how I reacted to different medications over the past 6 months, and the fact that up until now I have been very healthy lung wise, having NEVER smoked and not even having been around a heavy smoking environment...the doctor says I probably have what they call Idiopathic Pulmonary Hemosiderosis.
What does that mean? I dunno...the doc said I may be trying to get some sort of auto-immune disease, like Lupus or sarcoidosis, but at this time, I am testing negative for them. Idiopathic means, "we don't know what causes it". Pulmonary of course, refers to the lungs. Hemosiderosis is the one I'm not really sure about, so I am going to google it and study about it. It basically is some sort of bleeding problem that, if untreated and not put in remission can cause permanent fibrosis of the lungs...reducing capacity a great deal until the end.
What will we do about it? Well, since I have responded fairly well to the high dose of steroids (prednisone) that I am on now, the course of action is to TRIPLE that dose for 6 to 8 weeks, and see if we can get it calmed down. I am still on oxygen, at home and everywhere I go, and have been since this started 6 months ago. I will stay on the oxygen, of course. I get real "oxygen starved" feeling when I do much more than be up for greater than 10-15 minutes. That time frame will definitely get better as we progress with the steroids.
The problem with the very high dose of steroids is the side effects. They can cause osteoporosis (so I will have to start taking a med to prevent that), it will cause diabetes, so I will start checking my blood every few hours and treating it with insulin (no, I'm not diabetic, but steroids make your sugar high and that can cause many problems). The steroids cause weight gain, not only from fluid retention, but from increasing your appetite. I've gained about 30 pounds since I started taking the lower dose 5 months ago! Yikes. Extra weight and fluid retention causes high blood pressure...I am usually very normal with my blood pressure. Yesterday I saw 4 different doctors and my blood pressure was as high as 197/86! That is incredibly high! I will need to go on something to reduce it, for sure. Hopefully, he says, all these problems may reverse themselves when I come off the steroids. Of course, excersize isn't a good option now...I have a garden hose size hole in my left chest/flank area, and several 3 inch incisions in various places on my chest, so no swimming for another month or two. And I can't breathe when I try to walk.
Finally, the pulmonologist wants me to get a bone scan (to check for osteoporosis and get a baseline), he wants me to see a rheumatologist (to keep an eye on the 'auto immune' possibility), a cardiologist (for the blood pressure and the funny, squeezing type chest pain that I've had 3 or 4 times during this process that radiated up my neck and that was very different from the chest discomfort before or after the surgery). I have to get an MRI of my back to find out why I'm having such bad low back pain and numbness in my toes. Damn! It's exhausting to do all this...I can only pray for strength...
I appreciate your prayers. It means so much to me to know I'm not alone in this..."if any two.." I cling to that. I am also very careful to guard my mind and thoughts and put things in my brain that comfort and reassure me. It's good to see some of my favorite friends here. Thanks, you guys. You melt my heart.
My mother has had a hard time dealing with me not wanting to discuss politics and the sorry state of the country during all this! She says I need to stay informed, etc. I had to sit her down and tell her that I wasn't interested in saving the country, or the world, right now because I am fighting to save myself! It's a conversation I never thought I'd have to have with her because she is a former Wayfer and has always reminded me to keep positive and talk to God in the past when I was going through hard things.
The last thing...is the chemotherapy. Although he says this is not cancer, he says this type of problem is sometimes responsive to
a chemo med called Azathioprine. He said we would start that after the 6-8 weeks of high dose steroids. I haven't even had the courage to look that medicine up yet so I don't know what it does or how it's given. It's probably something like Jim Martin had, or has had occasionally, for his Lupus.
The good news is that my son is back home. He came home a few months ago to help me move and to help me out. He decided to stay, saying he was going to go into the military soon, when I didn't need him here anymore. When I started to get a little better after starting the lower dose steroids, he said he'd stay until they did this surgery to make sure I'm ok. Now I'm not sure if he will go into the military. He may just stay here and start college and help me out. He has been so sweet taking care of me, stopping by my room every so often asking if I need anything.
Of course, my daughter is still living with me. Sometimes she's a great help...and sometimes she's tired of me! Oh well...! A 24 year old takes their social life very seriously, you know. And my sister comes over almost every day. At first to help me get into the shower and to be there in case I had trouble and fell (I have one of those dorky 'shower chairs' now), and to help me around the house. We moved at the beginning of May and she's been doing the unpacking while I tell her where to put stuff. She's been able to have a lot of time off from work and we are building a relationship that we haven't ever had. It is good.
Good gracious, am I ever glad I took out that short-term and long-term disability policy when I started at this latest hospital that I am working at. It gives me some peace of mind not to have to worry about money during all this. If any of you are wondering if you need insurance, whether medical ins. or any sort of disability insurance...DO IT!. TWI always discouraged that sort of thing and promised everything would be taking care of. BULL! It's funny how they managed to basically fire anyone who got sick or had needs. I'd gone for years without having insurance when I went to work for Emory Hospital, and a 'still, small voice' told me to check those boxes off when I was in orientation. It has paid off very well and given me a great deal of peace. Because I am on the oxygen and coughing up blood, I haven't been able to work at all. I still won't be able to work for quite some time not only because of the breathing problems but also because the steroids make you highly suseptible to any sort of infection...and working in the ER or ICU will not do!
Speaking of Emory Hospital, I'm not sure if I've ever told most of you that I work there. I mention it now because I am confident that I will get the best care in the country there. The surgeon I had is in the top percentage of his field in the nation. This Idiopathic Pulmonary Hemosiderosis (IPH) is rare and I know they won't drop the ball. Because Emory is a teaching hospital, they have the "baby" (new) doctors trying to out-do one another when they have 'neat' diagnosis'!
There I go again...finding the places where God continues to work in a situation even when things might otherwise look bleak. If that's a 'fault' then I'm glad it's one I have!
Y'all, please forgive me for spelling and grammar mistakes. I'm really tired and I don't want to take the time to proof-read right now....not that I'm sure it would even help! And please forgive me for not updating often...sometimes I just feel so profoundly exhaused that I can't make myself sit at the computer. I want one of those new tiny little laptops that I can sit in the bed with me!
Hugs to all, and please keep up the prayers...they are so vital, and so appreciated!
love,
Robes
p.s. Lifted, I got your email, my addy is the same. I'll write to you in a day or so. Thanks for writing!
#14
Mark Sanguinetti
- Do I have kids or did I read it in a thread?
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Posted 31 July 2009 - 08:59 PM
That sounds positive Robie. We will keep up the prayers.
All the best to you.
Regards,
Mark
All the best to you.
Regards,
Mark
#15
Zshot
- Would rather be playing racquetball
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Posted 01 August 2009 - 10:35 PM
Robie,
Thank you for the update. I think that it is great that your family is able to help you out. If you need anything, let us know.
You are in my prayers.
Craig
Thank you for the update. I think that it is great that your family is able to help you out. If you need anything, let us know.
You are in my prayers.
Craig
#16
Watered Garden
- No mountains or oceans but the tomatoes are terrific!
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Posted 03 August 2009 - 07:58 PM
I'm so glad to hear from you! And you're right Emory is just great!
"We won't get fooled again!" The Who
#18
frank123lol
- Wonders what that special water is like
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Posted 16 September 2009 - 03:44 PM
Robes,Praying,Wish the best.
#19
potato
- dogs and cats, living together... mass hysteria!
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Posted 16 September 2009 - 06:07 PM
wow, I just saw this. it's been awhile since Robes posted. I hope everything is ok.
I'm a big fan of entropy.
#20
Kit Sober
- GreaseSpot Regular
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Posted 11 October 2009 - 09:44 AM
so glad you have your family there to help you through this.
Growing older can be a bear and the kindness of family softens and cushions the blows of the devil on us. It's so sad for those who do it alone.
(So glad Greasespot Cafe can help be part of that family as well
)
Hope you are doing better every day, in every way.
and you are always in my prayers whenever you come to mind.
Growing older can be a bear and the kindness of family softens and cushions the blows of the devil on us. It's so sad for those who do it alone.
(So glad Greasespot Cafe can help be part of that family as well
)Hope you are doing better every day, in every way.
and you are always in my prayers whenever you come to mind.
Kit Sober
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