Mission Complete

Yesterday I survived my ordeal. I must say I seemed okay distracting myself by coverage of the royal wedding on television. I loved her gown, which reminded me so much of the elegant one worn by Grace Kelly. Her sister's gown was equally lovely but I wonder why she would have worn white to the wedding. It would have been just as lovely in a soft peach color. But I digress.....I arrived at the hospital early as I had to have my coumadin level checked (I had to stop it on Monday which put me at risk for a blood clot.) The level had been done the day before at my doctor's office and they accepted that test so I was actually a bit early. The set up of this hospital was different. The "short stay" unit of any having a procedure which required an ultrasound or other radiological device, was located in the radiology department. So I was admitted into that unit and immediately the nurse warned me that my lung would probably collapse, at least in part. HUH? My doctor had mentioned this was a possibility but the nurse made it sound quite likely. That's when I became nervous. Rob was not permitted into that unit until my procedure was done and I was returned to that room. One nurse was at lunch and the remaining nurse was simultaneously discharging two patients while admitting me. Shortly after she began, the other nurse came back from lunch and things calmed down. The other nurse took my medical history and I liked her better. She was calming. I waited an hour to be taken in while they were "saving" a patient's central line. They apologized for the wait but I told them to take their time, that was certainly more important than my procedure.

They finally took me into the room and began to ultrsound my lung area. The doctor said he was going to make a mark at the right spot and when I was expecting to feel a pen I suddenly felt a needle and jumped. (I was in a sitting position, bent over a table and holding a pillow.) He told me I needed to calm down. I then explained that as long as he told me what to expect we would be fine. He then gave me the shot to numb me which went really deep. He then inserted the drainage tube and it took about twenty minutes I think for it to all come out. It looked like beer (which I do not drink.) The doctor is sending the fluid for pathology and other tests. He removed about a litre from the area surrounding the right lung and I could feel a weird sensation as the pressure was removed the lung was able to open up. It actually hurt at first to breath using a lung which had not been used in months. I also coughed a lot. They then xrayed to make sure it had not collapsed and the xray was good. I was relieved. At this point I am back on my blood thinners and am using an injectible medicine as well to quickly thin the blood. Now I am waiting to see the results of what was in the fluid, and hopefully they will be able to tell what caused it to be produced. While it can be caused by pneumonia, I made much more after the pneumonia had cleared up. I will be on oxygen for awhile but I am hoping that it won't be permanent. My back and lung area are a bit sore but I'm sure that is to be expected. I'm just relieved that it's over.

Two Choices

Just back from the pulmonologist where I was given two choices:
A. Have part of fluid removed tomorrow and then next week will have other part removed. (too much to remove at once)
B. Have part of fluid removed, be admitted to hospital with chest tube in lung so it can drain the rest of the fluid out. Minimum stay of three days.

I chose option A. The thought of having a chest tube hanging out of the lung did not sit well with me. Yikes. Talk about a source of infection. Apparently there is quite a bit of fluid (I saw the CT scan myself with the doctor showing me.) Most likely at least two litres. My right lung is squished so badly that it can only use 50% of the lung. NO wonder I was gasping for breath. I will need to be on the oxygen for a while yet. She is having a second machine delivered for me which will be hooked up to my CPap as she said I must have oxygen 24/7 right now. My chest actually hurts, from the pressure of the fluid. She promised I will feel so much better tomorrow after I get at least part of the fluid out. Trying to focus on the positive but still a bit nervous. Will keep you updated.

UPDATE

Yesterday I was finally able to speak with my pulmonologist and she had the CT report. There is a lot of fluid surrounding my lungs. (Years ago this was called pleuresy.) It is now called pleural effusion. I have had it since January, with it enlarging and putting pressure on my lungs and preventing them from filling up with air. This Friday I will be admitted for a short stay and hopefully at 1:00 I will have the fluid removed and be much more capable of breathing. I am nervous about the procedure, having seen my grandmother have it done. The needle is very long. I am not a fan of any needles.

I just have to get through the week with not exerting myself and carefully using the oxygen. I pray that a week from now I am breathing and feeling oh so much better. Perhaps the end is in sight.

Changes

Last week I began having some real problems with breathlessness to a new extent. I went for lung rehab on Wednesday and they sent me home. Not only was I having distress trying to breathe (even on oxygen) but they said my color was off and my lung breath sounds were not good. I came home and called my doctor, who was on vacation. Spoke to covering doctor who called the respiratory therapist at the rehab and decided I needed home oxygen (something she had been saying for over a week.) Late Thursday night I took delivery of a huge (R2D2 type) tank with liquid oxygen and a portable unit which can be filled from the larger unit. I had such mixed feelings but I was in no position to refuse it. I still use my other machine for sleeping. On Thursday morning I went for my CT scan. It was originally scheduled for Tuesday but the machine broke. I had the same problem as last time, I simply cannot lay flat on my back and breathe normally. I am gasping for air yet trying to hold my breath for three intervals of a minute each. Talk about torture. The CT scan showed some more problems which I won't go into except to say that the pleural effusion is now larger. This may be causing all the lung distress but you cannot know for sure as other things were observed as well.

At this point, I was given some information about post radiation lung disorders. After doing extensive research it certainly seems a possiblity this is what has been happening to my lungs. I am eager to discuss this with my lung doctor and she is supposed to call me this afternoon and meet with me on Thursday morning. I don't want to speculate at this point and I am not qualified to do so but I am certainly concerned. I was to return to work May 1. I don't see how that would be possible, but that decision is the doctor's not mine. I do know that I would need a lot of arrangements made in order to do that. I work a stressful job where there is no time for breaks other than the scheduled half hour lunch and two fifteen minute breaks.

I haven't been online too much. My son continues to have intestinal issues and I am greatly concerned about him. He was hospitalized eight weeks ago for several days and has been to the ER twice since then. He did come over yesterday and we managed to have an Easter dinner with my husband doing most of the work. My mother and sister also joined us. It didn't feel like a holiday of any kind. Even with the oxygen when I try to do physical things I have problems. I am tethered to lines and have to get to the main tank to change the setting if I am moving about or sitting. I certainly hope that this is going to be for a short time.

Sunny Sunday

Yesterday the weather was damp and cold then we had torrential rain, lightning and thunder. It woke me throughout the night. I have not been feeling well the past few days. I think that a lot of people come to lung rehab when they are still sick. I have become very attentive to using disinfecting wipes on nearly everything I touch there. One woman is particularly dirty. Her clothes desperately need washing, her personal hygiene is terrible and the people who work there are distressed about it. They are helping her but have gently made comments which are ignored. I have never had to be in such close proximity to someone like this before. I am always the one who feels sorry for people. This woman owns her own home and can do laundry. I have to keep a certain distance from her because I start to feel sick from the odor. She worked until last year and I cannot believe that she went to work like this. She is not as breathless as many of us. She moves around easily and can be on the treadmill with no real problem. Last night I began to ache all over. It was so damp that my sternum was aching. Not surprising since it has so much wire in it, but it's not a problem I have had like this before. I couldn't find a position to sleep in that was not painful. Hopefully tonight will be better. If not I will take something for the pain. I miss my father terribly. Easter is coming. He loved holidays and celebrations. I have invited my mother and sister to come here for dinner. I think having dinner there would be harder. I can't believe he has been gone for two months now. My mother is doing okay. Better than I had expected,but still has some really bad days. She has people wanting to visit her, or inviting her but says she only wants to spend time with her family right now. I think she just wants to be with other people feeling the loss. So we are spending more time together than usual and that's been good. IF my CT scan is good on Tuesday, I will probably be going back to work May 1st. We'll see. I won't get the results until ten days later at my doctor's appointment.

Brought to you by the letter U

I really like having a laptop. It's just so much more convenient to be able to use it wherever I choose. With two pets (especially a cat) I find that it gets very dusty and for several days I lost my letter U. Since that letter is in my last name and used frequently it was really a pain to have to hit it several times or go back and add it because it was missing later. I am not supposed to use any cleaners of any kind, particularly inhalants. I had to wait until Rob had time to do this for me. It took about three days. I mean the guy does work full time and then has to do a lot of things around the house I can no longer do. It's frustrating for me to have to wait and ask people for help. I would so much rather be doing things myself. I remember seeing people with oxygen tanks and never thinking of what their lives were like. It's just so inconvenient and frustrating to find myself walking ten feet and feeling a tightness in my chest and realizing I am already out of breath.

We went to Applebees last night. I had hoped to go to Kohl's afterwards but I had rehab yesterday and I was so tired that we had to come home. I did have a great dinner salad. It looks like the sun is finally back. If the temperatures warm up I think my lungs will be better. The dampness and cold have been a real problem.

Is anyone besides me watching American Idol? My neighbor Stacey does and we discuss it the following day. She is always offering to drive me places and help me. I don't take her up on it but just her offering means so much. I am truly blessed with good neighbors here. Time for breakfast. Wishing you a bright and sunshiney day.

Pressing Onward

I think one of the hardest things to do in life is to being working hard, not seeing much in the way of results but still pushing onward towards the goal. In rehab I am not seeing results. They have tried repeatedly to put me on a treadmill and when they do I lose my breath quickly. Mind you, I am wearing oxygen when this is happening. I can't go more than three minutes without struggling and watching my oxygen plummet. I can't tell you how frustrating this feels. All the breathing excercises and other things seem to have no effect on this. Even the pulmonary therapist tells me she is perplexed. She is suggesting I get a second opinion from someone who is prominent in the field. I am having another CT scan next Tuesday and if that doesn't show something then I will try to set that up. She also feels that I need oxygen for home and probably have needed it for months. The doctor asked me but I said no, thinking that I would be okay without it. I also declined her suggestions that I get a scooter for when I need to do any walking. I guess a lot of it is my age, but I cannot accept, at least now, that this will not get better. I just keep thinking they will find the problem and fix it. The eternal optomist. Now for something completely different................ Does anyone else have problems with people calling during their routine dinner time? Mind you, when I am working I am rarely home before 6:30 and people know I am just coming in the door then and rarely call. Now that I have been home a few months, I am finding anywhere from three to ten people call at that time which is 5-6 p.m. I have answered the phone and told them that I am either preparing or eating dinner and will have to call them back. The same people will call again during that time. The obvious solution is not to answer the phone during that hour. When my Dad was sick I was always afraid not to answer the phone because something cold have happened. Now my mother is alone and I worry about her. Also, my son has been sick twice recently. He was back in the emergency room all Saturday night. He got a stomach virus and dehydrated. When he gets sick, his anxiety is bad and he fears that he might be relapsing. I offer for him to come stay here but he knows that my immune system is weak and refuses to subject me to his germs. We do a lot of talking on the phone during that time. Today I am trying to put through a real estate referral. I have to take my sunglasses back to have another prescription put in them. I need to get to the grocery store for a few items. Lots of small things. It is supposed to be raining hard later so I want to get them done early.

Weather Chaos

Yesterday I had to pick up my car which I had detailed. (I have a family member who does that and get a good deal.) My mother came to pick me up and the weather bug told me it was 62 degrees and it was clear outside. Deciding to welcome spring, I threw on a long sleeved T shirt, jeans and wore flip flops since we were going for a mani/pedi before picking up the car. We found a place that does both on Mon., Tues., or Wed. for $30. In this area that is cheap. By the time we arrive at the nail salon it has cooled off significantly and now is a bit windy. While we are in there heavy rain comes in and before we know it the temperature had dropped 20 degrees! We popped into Dunkin Donuts next door for some warm coffee while waiting for the rain to let up a bit. We got to the garage and noone was there. We went to my mother's and I left a cell phone message to please contact me when they returned from lunch. By the time I got out of the car to pick up mine I had to crank the heat up. My feet were freezing and so were my arms. I made it home but the chill had really taken me over and all night I felt cold. My car looks really good. It's a few years old now and I try to keep a good coat of wax on it. There had also been some mold on a door jam and they removed that. Rob and I went out to get a nephew a birthday gift and pick up a few grocery items. From running in and out of places and having been put through a work out the day before, I am really achey. Hoping I can make it through my entire regimen today. Of course, the breathing is the most important part but they want all my muscles worked out. I think I will take Advil half an hour before I get worked out. I think muscles that haven't been used in two years are being excercised. It's a good thing but no pain no gain I guess. Maybe I can lose a few inches in the process.

Time or the Lack Thereof

On mornings such as today there just doesn't seem to be enough time to do all I want. I go to the rehab facility three times a week. While it is about twenty-five miles away most ways I went in the past, I was able to find a zig zag shortcut. I am now getting there in about 35 minutes by shaving off some miles. In order to take the shortcut I have to drive on a highway that is filled with trucks. They cut you off and I am not used to that. I have to be very attentive to the vehicles around me. Still, it is worth the time saved. I leave here about twelve thirty and don't return until about four. At that time I am frantically searching for something for dinner. At five Rob arrives home looking for conversation and something good to eat. You would think that I had plenty of time to get organized before leaving at twelve thirty but what happens is I make coffee, read emails, get a few phone calls, make the bed, and decide what to wear for the day. Since most of my clothes I wear when not working are jeans it's been a problem for me to find clothes I can excercise in. I did find a few things and I only have one pair of shoes that can be used. It's still winter or I would have many other things I could wear. Well, it's Spring pretending to still be winter I think. Today I will stop by my mother's and pick up some peppers and make stuffed peppers for dinner which I will then share with her. She doesn't want to cook but she enjoys a nice dinner so I am trying to see that she has that. My aunt feels I should force her to come here for dinner as opposed to delivering it. I just can't make demands on her at this time. When I see her instead of the mother who frustrated me so much of my life, I see a frail woman struggling to make it alone. I worry now that at 79 I won't have her much longer. If you would have told me in my twenties I would ever feel this way I wouldn't have believed it. When you lose a parent you have spent so much time with it changes many things. I enjoy talking to my siblings now because they understand. Their experience is different than mine but we share a loss. A few friends shared memories of my father with me and that helped to. We all have different experiences losing a parent, just as we all have different relationships with our parents. Still, I find that people who have not lost a parent can be so insensitive. Today is the funeral for the young mother. The funeral is at 11:30 and my Mom was not up to going. I was already scheduled for my rehab and if I don't go I would have to pay for the session out of pocket. I know there will be a lot of people as she was an elementary school teacher. My thoughts are there with her and her family. I cannot imagine her young husband, married two years and left with a week old newborn son. I know her family doesn't live far from them and I'm sure they are only too happy to help. They are a close and loving family. Well, time to answer emails and get start getting ready. I have to keep myself busy right now. Have a good week.

Rehab

I have had three visits to the pulmonary rehab facility. It has been an eye opener in many ways. On the first day they realized that I cannot do any exercise (even walking longer than 4 minutes) without oxygen. If I don't have oxygen, my oxygen level drops below 90 which is not good. It explains a lot of why I have struggled, especially the last year. They call what happens to me "DEsat" meaning your oxygen level has desaturated. I am now working on a machine, doing muscle strengthening exercises and breathing exercises but all while wearing oxygen. Depending on how much my lungs improve, they are thinking I may need to have home oxygen for times when I must ex cert myself. Although I had told my lung doctor about this, it is now documented by machines that measure the activities. I am slowly getting in better shape I think. My muscles had not been used because of the breathlessness. I am hoping to push myself enough to get better use of the lungs. They monitor me and stop me when it's necessary. When you lose your oxygen it makes your heart work a lot harder and your blood pressure rises. This is when I have to stop. My mother had been doing pretty good until yesterday. Yesterday she had to go for a mammogram (if you remember her mother died a year and a half ago from breast cancer.) She was so anxiety ridden then on the way home she passed the cemetery where Dad is, it was raining and dismal and she lost it. She became physically sick. We tried to take her out to dinner but she refused. We brought her home a dinner (crab cakes, potatoes, veggies etc.) but she took a few bites and said she didn't feel well. I offered to spend the night but she refused saying she didn't want me to get sick. She was really upset and I felt horrible leaving her there alone but she insisted. A twenty-nine year old young lady from her church gave birth to her first child a week ago. On Thursday they found the new mother was very ill and rushed her into intensive care after they diagnosed an infection. The mother passed away less than twenty-four hours later. My mother has been friends with her mother for many years and just saw them at my father's funeral. It is such a tragedy. This week old baby boy lost his mother and will never even have memories of her. It has hit us all hard. The funeral will probably be next week, we are still waiting for details and not wanting to bother the family with a phone call. My mother called and asked me if I would go out with her to lunch. I guess she is ready for a change of scenery, perhaps briefly. I am excited that she is willing to leave her house. She hasn't done that much. Life goes on when you lose someone you love...it truly does....but it's never the same.