This whole thing started with just a little annoying cough that would not go away! I went to an Eye Ear Nose and Throat Doctor, to see what was up and he looked down my throat declared that it was infected (I had no pain) and prescribed me an antibiotic and a steroid. After taking them there was no difference, so back again, this time I get another antibiotic, with a cough medicine. Take all that and still, nothing. Go back gives me yet another antibiotic and a couple of bottles of Nasonex. Still nothing, still coughing, since my sister said she had had a similar experience and it turned out to be Reflux disease he gave me a prescription for Nexium. When that did not work he said, well it must be something in my chest and sent me for a chest X-Ray and referred me to a lung specialist. Well, as soon as I got the X-ray I knew I had Pneumonia in my left lung, the chest cavity was about 3/4 full of liquid. The lung Dr. sent me for a CT scan of the chest just to confirm the diagnosis, of a "plural effusion" and then we went to the hospital the next day to drain it. Well, the procedure itself, which consists of having a 7 inch needle stuck into your chest cavity from the back which is connected to a plastic tube which in turn is connected to a plastic bag. The bag holds approximately 1/2 gallon of liquid. It takes about an hour to fill the bag, then you get taken to X-ray to see how it looks and they send you home. The first time we did it, I was in so much pain they brought the X-Ray machine to me, and stayed there most of the morning, just trying to rest, I went on my own. as I had asked the Dr if I needed to bring someone to drive me home and he told me no. Well, really I was not in pain for the first day but then after the local anesthesia wore off the pain came from my lung trying to accommodate itself into it's cavity again. I was out from work for 3 weeks. Well the draining lasted about a month, I returned and it was full again so back up to the hospital for another draining. In the meantime the liquid that had been drained from me the first time came out negative as far as being cancerous, or TB, or anything infectious or contagious. After the second draining the liquid was sent out again and all came back negative again. Well, in about two weeks I'm back in his office again, still can't breath well, lung full again. This time he takes a biopsy of the inside of the chest cavity, which at the time is not painful despite the fact that they use a needle big enough to baste a turkey with! The biopsy is sent off to another hospital, and I am sent home. Within a week I am back to the Dr's because he had given me a pill for a thyroid condition (which he discovered I had by sending me for a barrage of blood tests) and I had a bad allergic reaction to it , he checked the lung, full again. He tells me he has gotten back the results from the biopsy, but has sent it off to the states to get a second opinion. He then sends me for a mammogram, and a Ct scan of the pelvic and stomach area. He says while writing the scans up not to be scared because he wrote mass on the scan. So I told him "What have I got some weird African Disease?" He said no that apparently somewhere in my body there is a mass and the cells from this mass are sluffing off and going into my lung and thus the liquid. He does not say Tumor, nor Cancer just a mass. ********************************************************************************************************Well, hopefully today July 8,2008 I will get the truth the whole truth and nothing but the truth. I have to pick up my scans this afternoon, and no doubt I will be having my lung drained again tonight. I can't say I'm not a little scared, but I am more anxious just to get this over and done with so I can get on with my life again. My husband is not at all happy with the Dr and the fact that each time we go to have my lung drained I become a show and tell for student Dr's. The last time there were 5 of them and one held the curtain so my husband could not enter and he became upset. Plus the fact that the Dr basically turned his back on him when he was trying to get some specific answers. I do not know at the moment of this writing if he is going to make me stay in the hospital. So my friends this little adventure in my life is about to come to a head. I hope I will have time to come back and write more here later. If you are so inclined as the song goes "Say a little prayer for me". **********************************************************************July 12, 2008 Spent 3 days in the hospital with and IV in one side and a chest tube in the other. They put the sealer in Dr doesn't know yet if it will work only time will tell with that. Because of the barrage of tests they had to do on me I went on an empty stomach Wednesday morn and didn't even get any actual food till the next morning, and that was all jello and clear liquids. The chest tube was first, put in the same day later that evening my Dr put in the sealer and I was doped up with pain killers for the rest of the night. Next morning surgeon comes in says he wants to change the tube to make sure I get no infections, but after he came in my Dr. told me that he told the surgeon to just take it out so I could rest better cause he had done what he wanted to do, which was to put in the sealer. Well, these people pissed around so long, then they came to get me to do a sonogram on my thyroid, then over to do the MRI which they were arguing about, so while I'm down there the surgeon shows up in my room to remove the tube and since I wasn't there he left for the day and I had to keep it in me till the next morning.That evening they come with two 8 oz glasses of fleet to clean me out. Since I couldn't even get out of bed to go to the toilet I had to do it literally in the bed or on a bed pan. So I didn't sleep much that night, then the next morning they come with an up the butt enema to clean me out further. After that indignity I'm left to lie in bed for about two hours more before they come to get me. First they do another chest x-Ray, while I'm waiting in the hall outside x-ray the doctor comes to tell me that basically the MRI did not show us anything new, however the thyroid scan did show some nodules which he wants me to go immediately to the other end of the hall and have them do a nuclear med study. Unfortunately this study has to be done with another shot of iodine and since Monday I had done the CT scans one of which involved the iodine injection I cannot do another one until Aug 7th. So back to the other end of the hall to do the dreaded barium enema scan of the intestines. After that little torture is over I am thankfully rolled back to my room and left to do as I please as now I can get out of bed YEAH! Well I headed for the bathroom to bath myself. Since I still had the dressing over the wound for the chest tube I could just do it via a washcloth with soap and warm water, but it felt so good. I hadn't seen my face since the day I entered the hospital and of course I looked like death warmed over. Just kidding not quite that bad but you get the idea. In this 3 day gauntlet I lost 10 lbs, and unfortunately a lot of energy. But I slept like a baby last night in my own bed and am doing household chores very slowly today. So that brings us to "where do we go from here?" Since I cannot do the thyroid thing till next month the doctor came up with another test that I can't exactly explain but it has something to do with injecting me with some kind of glucose, and supposedly this glucose either attracts the cancer cells or the other was around so we can see where the heck it is hiding. This test is not done here, in Mayaguez but either in Ponce or Aguadilla, which is about an hour away. Dr. said he would do all the calls etc. to find out how, when and where, I have to call him on Monday to let him know how I'm doing and so he can probably listen to my lung to see if it's clear. His office is only 5 minutes from the house so if I have to go see him it's no chore. Okay so now you know about as much as I. Just keep me in your prayers. As soon as I know something new I will let all of you know. Keep the faith!
JULY !9, 2008 Well, Apparently the Fix-O-Flat they used to seal up my chest cavity worked as I went on Tuesday night not being able to breath too well, to have the chest cavity drained but it only produced a very small amount of liquid, about 16 oz. Unfortunately the cough is back and now my ankles are retaining water despite the fact that the Dr has now given me a diuretic. My breathing is labored and I can only move at a snail's pace and not bend over much as I start breathing hard. On Tuesday the Med Plan gave the approval for the PET SCAN which is supposed to find this beast that is in me robbing me of my health. Unfortunately they could not get me in until this Thursday morn the 24th. So All I can do is sit and wait and try to rest which is not easy as I have to lie on my side to keep from coughing and have propped up the head end of the mattress, so I don't cough so much. I feel like someone is squeezing my chest and cannot tolerate a bra now, because it just makes it worse. Hope fully on Monday my Lung Dr will give me some thing to help me breath better.
July 21, 2008 Went to the lung Dr this morning and he listened to my chest, I told him the trouble I was having breathing and he said that now the liquid was actually in the lungs, not the chest cavity and that was my breathing problem but in a way this is a good thing cause now it can be removed via a diuretic and not a drain tube like before. So he put me on a heavier diuretic and it did the trick in one day I was breathing so much better. My feet and ankles were also holding water and they are better also. Once I take the pill I have to stay very close to home as in about an hour it begins to do it's thing, I have also found I can only eat in small amounts as one of the side effects of this diuretic is nausea. So I have to know just when to take it, in order to be able to function. Two more days and counting till the pet scan. I certainly hope they will tell me that day and not make me wait another week for the analysis to come out.
Nov. 24th, 2009 Well, thanks to a message to my blog today I realized that I sort of left this story hanging. So here is the rest of the story....~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~We went to Ponce, and I had the PET CT Scan done, we had to wait almost a week for the results but they came back positive for Cancer. I took it stride and told my lung Dr Ok what now? He said "well, chemo" so as of August 1st 2008 I have been in chemotherapy . The coughing has thankfully stopped, and I can breath much easier now despite the fact that there is still liquid in the chest cavity. This pleural effusion apparently is going to be with me for a while to come. The oncologist says I will be in chemo the rest of my life because the "tumor" cannot be surgically removed . I told him I was going to beat the odds. My tumor has gone from 9 centimeters to only 2 so I am at least hoping for a remission. My next scans will be done in Jan. 2010.I feel fine thank God. No nausea , I do get to a point where I have to lie down and just sleep to regain my energy but hey, that happens to a lot of people my age LOL. Thanks to all of you who have kept me in your prayers, I'm sure that God has gotten me this far and will go all the way with me no matter what.
posted by Imgettinupthere
trust that whatever the outcome you and your husband will be equipped to handle it with God's Grace
and Love. So when the mass is removed or drained and out of your body for good, what sort of eons online celebration do you have planned? :-)
God bless your sweet heart on your journey back to health. You and your husband are not alone.
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posted by Makkadawn
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posted by GMA7
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posted by slw1541
We are all with you and you family.
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posted by LilDJ
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posted by beautifullife
Have you heard how Chosi is doing?
We know each other from messages posted but when it comes down to problems
and illnesses we're like one big family who are out there rooting for you.
I do hope all goes well and the Dr gets to the bottom of your problem.I'll
be thinking about you.
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posted by SapperRanger70
Well now this puts the timeline around Oct. 14, 2009. Went back in and told the doctor that I was still having problems breathing so he advised me that he was going to have a chest x-ray done in the office. When the x-ray came back he showed me the films and told me that this was why I was having such a hard time breathing. My right lung was completely filled with fluid. He scheduled me for some bloodwork later that day and for a CT scan 2 days later. I did the bloodwork and followed back up at the hospital 2 days later for the CT scan. I gave the tech my copies of the x-rays and then she put me on the table and put an IV in my arm and prceeded with the CT scan. After the scan I went back out to the waiting area to wait for my results. The tech came out and told me that I should just sit tight because I was not going to go anywhere because I was likely to be admitted into the hospital as soon as my doctor arrived. When my doctor showed up he advised me that he had a consult with the radiologist and that my right lung, chest and abdominal cavity were full of fluid. As soon as he told me that I was wisked away to be admitted and then off to my hospital room. As soon as I was in my room the barrage of specialist started showing up. I had a pulmonologist show up and tell me that he want to perform a thoracentist the next morning to remove the fluid from my lung. A cardiologist showed up because they were concerned because there was fluid built up around my heart and that they wanted to monitor it in case my heart went under too much stress from the fluid.
The next morning came and the pulmonologist began the thoracentist and filled up the IV bag, 3 test tubes and 3 speciem bottles. I was able to breath alittle easier but since my lung was trying to reinflate itself I had a pretty vicious cough. My doctor prescribed some tussionex which help with the cough and since it also had a norcotic in it I was able to get some much need sleep. Well later that morning all the poking and proding began, it started out with some chest x-rays to see if the fluid was all gone. I had an EKG and ultrasound done of my heart to see if it was alright. They did all types of bloodwork and a TB test to try to narrow done what was causing all the excess plueral fluid. The doctors were wanting the TB test to come back positive to explain the fluid but it did not even turn red and raise the skin, so TB was not the culprit. The next morning came with the same round of test and procedures until I was told later that morning that I was going to be transferred to another hospital that was more suited to handle my next round of ordeals. So a few hours later I was transported by ambulance to a new hospital and another set of specialist, that was on Oct. 16, 2009.
Well, I get to the new hospital and start to get comfortable when the doctors start coming around. I get another cardiologist who is telling me that if my body does not absorb the excess fluid that he will have to remove the fluid via a needle but in the mean time he will just monitor my condition via a telemetry device that sends my vitals to the cardiology department. My pulmonologist shows back up and informs me that the fluid has build back up in my lung and that he was to have a tube inserted into the lung to have it drain. He also was to perform a bronchoscopy to get some tissue samples from inside my lung to check for cancer. Now he really gets my attention because I don't smoke or drink, my only bad vice at time was eating potatoe chips and drinking soda. I get the chest tube put in on Saturday, Oct. 17, 2009. This was done with only a local and with the use of a MRI to guide the wire and tube into place. Now I have this tube and collection box hooked up to suction that I have to deal with. I have to call the nurses for help with everything because I cannot be removed from suction and everything must be done with me stuck in bed. The next day I have my bronchoscopy done. The doctor pulled samples from inside my lung which came back after a few days as suspect but not cancerous. Well, he was still not satisfied because I was still pumping out a lot of fluid and he wanted tissue samples from the outside of my lung as well as from the surrounding organs. This is where the cardiothorasic surgeon enters the picture. He advises me that they will perform another surgery on Friday, OCt. 23, 2009 to remove the tube from my lung and place a larger one inside my chest cavity. While they are in they will also be taking tissue samples to have them tested as well. After surgey and a small stay in ICU I am wheeled back to my room with a larger tube hanging out of my side and still more chest x-rays and bloodwork.
A another week goes by and I am still pumping out copious amounts of fluid. Each container holds 2000 mL of fluid and I had gone through about 12 by this time. The doctors then decide to give me Lasix to see if I can expell more fluid this way. It would have been nice if they told what they were doing because I woke up from a deep sleep and for the next 5 hours urinated like there was no tomorrow. I was now refered to an infectious disease doctor because they think they have narrowed down the cause of my problem. Since I was working in the Southwest area of the US they thought I might have a fungal infection called Valley Fever, well being in Florida they had to send all my bloodwork and samples to a lab in California to do all the tests. In the mean time they proceeded with the medication but not until I had a central line put in. Being in the hospital so long, almost 2 1/2 weeks by this time all my veins had started to collaspe from all the nightly bloodworks. With the central line, they were able to to give me my IV's as well as take bloodwork samples.
Now the fun really starts. I start my round of anti-fungal medication and guess what happens, I break out in a red, blotchy itchy rash. The nurses called it "Red Man syndrome" I just called it annoying. My fluid production starts to subside and the doctors are starting to think that the may have just cured my problem. The cardiothorasic surgeon is just waiting until my fluid output is less than 100 mL before he pulls my chest tube out. My pulmonologist is saying that I can go home as soon as the surgeon removes the tube. Now it is just a wait and see sorta thing. It around Nov. 2, 2009. The pulmonologist has already cleared me to go home but the surgeon wants to wait 1 more day before he removes the tube and then observe me for another day before he releases me. The big day come on Nov. 4, 2009. I am finally released from the hospital after spending a total of 22 days stuck in that sexy hospital gown. But now all the follow up appts begin.
I have to return to the hospital for the next week to get my anti-fungal IV on an outpatient care service. My chest tube is out but still draining some fluid so I have to keep dressing on it that I have to change from 2-3 times a day until the hole seals itself up. Things were looking good for the next 10-12 days. Completed my anti-fungal treatment but at my follow up with the infectious disease doctor she informed me that the test result came back negative for Valley Fever and that she did not want to start anoter round of treatment because I was hyper-sensitive to the medications and that she also wanted to confer with the other doctors. So now I still have itchy dry skin that oils or lotions won't ease my discomfort.
On Nov. 23, 2009 I went back to the hospital for a follow up chest x-ray prior to my appt with my pulmonologist the following day. I told the x-ray tech that I was not feeling too good about the x-ray because I had started having problems breathing and not being able to sleep at night like before. Well, had the x-rays and waited around to make sure that the films came out alright when the x-ray tech told me that I need to goto the waiting room and hang out for a bit because the radiologist was calling my pulmonologist because I had a large pleural enfusion in my right lung, meaning that my lung as well as my chest and abdominal cavity had filled back up with fluid. I was told to go directly to my pulmonologist's office to discuss my options. Well I get there and the nurse had no idea I was coming so she calls the doctors. He tells her to get my vitals and that if my oxygen saturation levels were good that I could just go home and he would see me the next day. Well my oxygen saturation levels were good, I told the nurse that I had been living and working around an area of the Southwesten US where the alttitude was above 4000 to 6000 feet above sea level. Now being in Florida near sea level my lungs were in pretty good shape despite me only having the use of just one lung. Well who could figue that living up that high would keep me out of the hospital for another day. I goto see my pulmonologist the next day, well make that today and he is still baffled as to why I am still producing all this fluid. He advised me that he want to perform another thoracentesis tomorrow and to wait and see if fluid returns. If it does return, I'm almost sure that it will since it only took 1 day the last time this procedure was done, he wants to admit me into the hospital again for another chest tube to remove all the fluid, a heavy round of lasix and then pump a sealant into my chest cavity to seal off the plureal space so that the fluid has no place to accumulate. So now I am on a wait and see sorta mode since the doctors have no clue of what originally caused all the fluid to be produced and I am thinking that the sealant is just a stop gap measure to the problem.
I will let you all know what happens and I will keep you in my prayers...
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