Poor Air Quality but Beautiful Out

For two days they have warned of the air quality. It has been beautiful and sunny though. In the evening it's been cool enough to enjoy the patio a bit. For me I love the patio and watching the bird feeder and bird bath. Our next door neighbor has ducks and some of the tiny babies keep wandering into our yard. Rob leads them back (they follow him like he is the Pied Piper) and I even got a few pictures of him holding one. They make so much noise for their tiny bodies. Our pets are intrigued by them. They are contained in our fenced in portion of our yard so no threat to them.

I have had so many phone calls from the Univ. of Penn. Hospital. They pay attention to the smallest details. I should be admitted a few days before the surgery as I will need to go off of the Coumadin but instead be put on Heparin.
For those of you who are latecomers to my blog, I have had this surgery previously, with my aortic valve. It's a big surgery and the normal procedure is for them to cut through the sternum and wire it back together. Some people say it is not very painful and others find it to be very painful. It seems that more people who receive tissues valves (such as bovine or porsine) have an easier time of it. I have a mechanical valve and will be receiving another. I ran into some complications with my last surgery and I ended up in CICU for over a week. (I had been told that I would be in the hospital for a week total.) After I left ICU I spent another ten days in a step down unit. I experienced hallucinations after being given a sleeping pill and ripped out all my ivs. I was confused and when their was a power failure and I was on a ventilator I became so panic stricken. It's not just the physical that you deal with. I do believe I am going to the best place and will be using top notch doctors. The doctor who will be performing my surgery performs heart and lung transplants. He is prepared to deal with problems.

I continue to do very well with breathing. For the first time in months I am able to leave my house without an oxygen tank and it is indescribable the joy I feel when I just walk across a parking lot without gasping for breath. I swear that I will never.....never ever....take breathing for granted again.

Feeling Joyous and Grateful

I am hopeful, oh so hopeful today. My wonderful pulmonologist, Dr. Gilbert, did my pulmonary function tests and they were greatly improved. Numbers such as 43% changed to 80%! I don't know who was happier the doctor or me. She had to fax a note to my employer today. I won't be able to return to work until winter. Once I have the surgery which wouldn't take place before July's end, it will be along recovery, including cardiac rehab. I am so hoping that my company will allow me to be on long term disability until that time. Financially, it won't be much at all but what is my life worth? Certainly worth more than the money I would earn if I worked but watched my health steadily decline. There is a window of time a diseased valve can be replaced but once things happen that would make the surgery unlikely to have a good outcome, that option is gone. I cannot wait. This is a big surgery. I will go into the details at another time but they will be doing two or three things at once. What I have is serious, but there is a "fix" to at least make it much better if not fix it altogether. The people in the doctor's office were surprised when they saw me. In the past month I have lost 24 pounds. Most of that was fluid that had accumulated because of the heart problem. About seven pounds came out in the chest tube and the rest has slowly come off with medication. I had to buy new clothes which has been fun except that my short term disability money has been exhausted. No pay unless I get approved for long term. Even so, that will be a fraction of what I made. Over the past two years we have lost so much income and had so much medical expense. Thankfully, I have had some money put away for medical emergencies such as this. We'll get by and what good is money if you don't have your health anyway?

Even though I am facing another heart surgery (and it's scary) I am so thankful that I live in a place where I have this option. I am so thankful that Dr. Gilbert went the extra mile and brought in cardiologists so we finally learned what the real problem was. The glass isn't half full, today it is brimming with hope. :)

The Waiting Game

I am still waiting on the final word of whether or not the doctors in Philadelphia will proceed with the surgery. My last set of lung functions tests (taken while I had so much fluid in me) were discouraging and they want to see better results. Sometime in the next few weeks I must have those tests redone. I am also getting yet another CT scan with contrast to clarify something else they found. Today I am down about twenty pounds from where I was a month ago. I now weigh about sixty-five pounds less than I did when I had my heart surgery seven years ago. That is without any surgery or diet pills, just lost the weight, particulary over the last twenty months by not eating. Some of it was fluid.

This morning I got up early and went grocery shopping. I am trying to eat a diet of mainly vegetables and proteins with some dairy. Eating little bread, low carbs and low sodium. I just bought an ice cone machine so I can make them and have them with sugar free blue raspberry flavored "syrup". It seems that syrup should be thick and instead it has the consistency of water but is flavorful. I also went to a local farm and bought three hanging baskets. My yard seemed naked. I won't be doing a lot of planting I have in the past. While I am breathing much better, bending over is a bad position for my lungs.

Yesterday was my first Father's Day without my Dad and I dreaded it. We bought a nice wreath for his grave that had a ribbon that said "Dad".
Tomorrow I go to the cardiologist here. I now have duplicated doctors in Penn. Sometimes I have to put myself on autopilot to do what I must. If I begin thinking of all that could happen it's overwhelming. One day at a time.

Home Again (Finally)

I was admitted to Univ of Penn Hospital on June 8th and was discharged last night about 5:30 p.m. I wanted to sprint my way out the door but Rob insisted I leave in a wheelchair as it was a hike to the parking garage. He was so right!

I had the cardiac catherization on both sides and another procedure done which I won't go into. I was awake for the entire nearly two hour ordeal, but the staff was wonderful and comforting throughout. I was given lidocaine at the sites where the incisions were made and a mild drug to relax me. The doctor spoke with me immediately, confirming what we thought to be so. My mitral valve was damaged with the infection in 2009 and now meets criteria to replace it. It is causing the pulmonary artery to have high pressure and my body is making a lot of fluid to compensate. Most of the fluid removed was already being replaced. They gave me some great drugs to get about ten pounds of fluid or more off of me. I feel wonderful again (except for soreness and fatigue.) Now a team at that hospital has to examine my hospital records to see how to proceed. My lungs must be determined to be able to stand a surgery if necessary. There is no point in trying to make one thing better if in turn another organ will be injured. Whatever they advise me to do, I will do.
One very disconcerting thing that happened was on Sunday morning. My roommate (whose lung was filled with fluid) passed away. I was talking to her a few minutes earlier. They rushed me out of the room into a private room. I think I went into shock and the rest of the day I was just barely functioning. I was so happy to come home. I keep thinking of that dear woman though and feeling that perhaps I should have done something more to help her. I kept reassuring her that when I was full of fluid I was in the same distress. They tell me she might have had something more wrong with her.
Well, I am beat. I went to the local hospital for a blood test, made phone calls all day and made a run to Target after getting my oxygen delivery.
Time to relax now. All in all it was a great day to be alive today. Thank you God.

Update from Rob

As you may know Nelle has been struggling with some health issues. On Tuesday she was admitted to the Hospital at the University of Pennsylvania.
She has asked me to let you all know that the procedure went well and she expects to be home. Sunday.
Thanks for all your good thoughts and prayers, they are much appreciated.

Rob

Lend a Helping Hand (if you can)

There is a cancer blog that I found via way of Susan's blog. She had a link to help you this woman who needs to raise funds to go for cancer treatment. If you can help her that would be great! Jeanne can really use a donation to help her get the treatment she needs. Please check her blog out and think about whether or not you might be able to help.

Waiting for my call from Univ of Penn Hospital telling me to come. I am going to be admitted today with the procedure tomorrow, Thursday. Nervous but eager to have it done with and know exactly where I stand as far as repairs or future surgery. Please keep me in your good thoughts and prayers and I will post when I can, most likely not before Saturday. Stay cool in this heat wave!

Now For Something Completely Different

It's been awhile since I made a blogging post that wasn't about my current health issues. I just read my friend Cynthia's entry and it got me thinking about forgiveness. When I was younger it angered me when people told me I needed to forgive others. Being raised with Christian values, this was a great source of conflict. I always felt this righteous indignation and for some reason that seemed to give me strength. Then I clung to the belief that forgiveness would only be granted if I received a request for it (even then I had difficulty granting it.) I began reading books and watching therapists on television who spoke about forgiveness. I began to realize that there were times I needed to ask forgiveness and never had. Oprah talked about how forgiveness was actually good for yourself. I began to see the other side of the coin. I began to think of things that had been done to me. One of the best examples was a childhood friend I used to have. I called her when I had cancer. She had a baby girl about a year younger than my son and I asked if she could watch my son some of the times I went for radiation treatment, maybe once a week. When I began to explain to her about the cancer she cut me off and abruptly said "I have to go. This is too depressing and I can't be your friend or help you." I heard her hang up. I sat there in shock and disbelief. I had known her at time for about twelve years. I carried this hurt for the next twenty something years. I was actually afraid to ask other friends for help for fear I would lose their friendship too. About twenty years later she called out of the blue acting like this had never happened. Over time, although it was never asked for, I forgave her. About five years after that she stopped speaking to me again one day, no explanation was ever given but I heard that she was upset with me because of a comment I made regarding her daughter's wedding we had attended. It was a buffet and our table was never called. Other tables were going up for seconds and I went over to the table and told them our table had been skipped. By that time there was nothing left but salad. It was very disappointing. Looking back, I have to laugh at this. I realize now that she has major problems that have nothing to do with me. I forgive her again, not for her (because she doesn't care) but for myself. We are all flawed individuals. Myself included. In life, it's just so ridiculous for someone to end a friendship over such petty things. REAL friendships endure those things. I think more than anything, I have realized that we use the word "friend" too often to describe an acquaintance. If someone hasn't been in your home in years (when they have been everywhere else they have wanted to be), is never avaialable when you need them, or never makes time to stay in touch they're just not really a good friend. In life we have so few really good friends. Ironically, so often the friends who are never there are the very ones who tell you over and over that they will be. I have learned not to count on people. In the end, I count on myself and if anyone else is there for me it's a bonus.

What we have here is a failure to communicate....

Good night! I have waited home for three days to get everything squared away with Univ. of Penn. The doctor's secretary has been trying to set it up but she had no medical knowledge and was not able to answer ANY questions (although she was a lovely person.) My doctor didn't give the doctor ALL the information from the report and there is something that I think might deter him from proceeding. Yesterday I spoke with his nurse who assured me she would get the answers for me. Still waiting. I did take my cell phone and go out and have a pedicure and lunch (salad with avocado and a freshly made balsamic vinegar dressing that was yummy.) I felt pampered. It was a good day. So I still wait for the answers to a few questions but for right now it looks as though I will be admitted June 8th with the procedure on June 9th. The mere thought of this makes me feel faint. A girl's gotta do what she has to do and I have to do this. My back is so achey where the chest tube was. It's badly bruised. Give me a minute to get a little cheese for that whine. Baby Bel. :)

It was GORGEOUS today. Sunny with a breeze and high was just under 80. WE might have dinner on the patio. It needs a little cleaning first. I have to have meals on the patio in this weather, especially anything on the grill. The other night Rob made the most delicious peppers on the grill. Cutting carbs from my diet was not nearly as difficult as following a low sodium diet. It's in everything. The only way to avoid it is to make everything fresh or frozen vegetables. I love tomato sauce and that is loaded. Trying to find some with low sodium but so far no luck. There has to be a market for this. I love Hebrew National 99% fat free franks but they are way over the top. I don't know if I will ever enjoy a grilled dog again. Maybe an occassional bite. Eating out is even more problematic since they don't give sodium information on menus. When watching the cooking shows they are so liberal with the salt. I do use sea salt but still I am so restricted.

Have I mentioned lately what a wonderful spouse Rob is? Yes, like me, he is not perfect but he tries. He has been giving me my evening belly shots. They hurt and I hate them. It's easier for someone else to do it. Rob gets along great with my son. He doesn't try to parent him but gently explains at times why I do things. My son worries about me like a mother hen. He wants me to follow his rigid vegan diet (which doesn't include fish, eggs or dairy.) I try to explain we all have to do what is right for us and respect the choices others make for themselves. He wants me to drink coconut milk. If I'm having coconut milk I want a pina colada not cereal!

I'm here and I'm doing okay. This will pass and I will get through it. After all, I am bionic.

Home Again

I am home once again. On Tuesday I must call the heart doctor at Univ. of Penn. to get a quick appointment. Then I must go there with my records (including DVDS showing the procedures I had done) and he will render his opinion. This is doctor is an expert in this field. I have a valve that was infected in the Fall of 2009 and it's damaged and now the pressure in it is high. The fluid was a result of that and the fluid pushed that up higher and higher until the three litres in total were removed. Now the pressure is lower but the problem must be fixed so that I don't end up in the same predicament again. I won't go into all the details here, there are other things as well to deal with.

They believe if they can find and treat the reason for the pulmonary hypertension it will stop. If not, I will have to deal with the same issues over and over again and I will never be free from oxygen.

I am currently breathing much better....I only need oxygen when I am excerting myself. Today I have been able to do some light cleaning, even bending over and been alright. To go to a neighbor's I did need the portable unit but was able to breathe well with it, unlike before where even with the oxygen I had real problems. I am in a much better place right now than I have been. All my hope is that the doctor I meet there will know what the best course is for this. I might need a cardiac catherization to determine whether or not a surgery is needed. He may decide not to do that since my mechanical valve but pose a problem in doing that. I will keep you posted. I have been here before, faced with what might be a large surgery that I really didn't want but knew I had to have. I got through it once and if necessary, I plan to get through it again. I'm a tough old broad. lol

Testing and Proceeding

Today I am having a chest tube put in. They didn't do it yesterday after doctors decided on a lesser invasive tube. I found out a lot of information yesterday. I have pulmonary hypertension and other things. After yesterday's information I am changing cardiologists.

Back in the Hospital

Friends,
On Thursday I went to see the lung doctor and when she saw the difficulty I had breathing and knowing from the xray I had another pneumonia, she sent me to the hospital to be admitted. I was actually relieved because my breathing had become so difficult I worried I would have a crisis while home alone. In the ER they ultrasounded my lungs and saw that all the fluid was back already. Since them, more has accumulated and today after seeing a chest xray they ordered a CT scan. I have some very excellent lung doctors brain storming. While they want to remove the fluid, the bigger question is why does this keep happening? There can be several causes and it's not black and white. There may be multiple causes. I am having breathing treatments every six hours and they have helped the lungs not feel so tight. I cannot be off oxygen for more than a few minutes without a problem. They believe this is a result of the fluid issue. I am really tired. I was in a room with a woman who was calling for help every half hour the first night and got little sleep. I am now in a room by myself, at least for now. Last night I had five hours of consecutive sleep. It was wonderful. Now I have to wait for the doctors to decide what the best way to proceed is. They are talking about many things and I don't want to discuss them until I know something is set to happen. Some of this is scary. I just have to trust in them (and of course I rely on my prayers and meditation.) They think they have a few options and want to do only what they have to.
Many of you are on my Facebook too and follow updates there as well. In the real world I have lost a few friends this year. It's okay though because I know that I have many friends out there who love me and understand what the last two years have been like for me. I am still grieving the lost of my father and dread the upcoming Father's Day. My mother is very disturbed over what is happening to me and cries frequently. I only tell her what she needs to know.
I will keep you posted. Thank you for following my blog and checking in on me.

Breathless in Jersey

Since Monday I have been experiencing the worst shortness of breath yet. I called my lung doctor Tuesday and she had me go for a chest x ray (thinking that the fluid was already back.) I had to have someone drive me there as I couldn't make it into the building alone. They told me to go right home that my doctor would be calling me. When I arrived home the doctor called but told me although there was a small amount of fluid, there was a new pneumonia brewing. Thankfully we caught it early. She called in antibiotics for me and I am doing four nebulizer treatments each day as well. I had to crank up the oxygen a bit. If I sit perfectly still I am okay but the minute I move I can feel the difficulty I have breathing. I am so exasperated. I had an episode where I was going to go to the pharmacy alone and became overwhelmed with panic when I got in the car with the portable tank but couldn't catch my breath. Rob stayed home from work today to take me to the doctor's. I don't know what she will say or do. I just know that not being able to breathe has become a real source of anxiety. I hope to get some help/answers today. It finally stopped raining and perhaps if the humidity lowers that alone will make a difference.

Have Tank will Travel

This constant drizzly weather with no sun is really getting to me. Today I am going out to a store and buy something. I have no idea what I will buy but I need some retail therapy. Really I do.

When Rob is with me it's just so much easier. Even though I have the handicapped parking pass often the walk from there into the store is a long one. Rob will drop me off at the door where I will find a cart and place the 7 lb. oxygen tank inside the seat meant for a child. My purse goes in there also. Then, with slight leaning on the cart I can shop. I really wish I knew of a creative way to dress the tank. It's in a black laptop type carrier. I am finally used to people staring at it and I heard someone murmur something about smoking to their shopping partner. Hmmm I wish they would have asked me what was wrong. Not everyone using oxygen was a four pack a day smoker.
My knee has pain from the NUSTEP machine and five minutes on the treadmill. Ibuprofen helps. I am thinking of ordering a custom bumper sticker that says "Girls with oxygen rock" or something like that. Suggestions will be given serious consideration. I have decided the best way to handle it is with humor. If you can't laugh at yourself you're in serious trouble.

Disappointment and Frustration

The fluid didn't show any significant information. If the protein was high it meant one thing and low another but it was right in the middle. If anything, it leaned toward being the fluid which was inflammatory, which would have been caused by the pneumonia. I expressed my deep frustration to the doctor about not having a specific diagnosis or a plan on how to proceed. She did the tests again to measure and evaluate and discovered that my lung volume is less than it was a year ago. (This is what I have been telling her that I cannot take in the air I used to be able to.) Now that the tests showed exactly what I had been saying, I think the reality set in.
Where do we go from here? I am continuing with the lung therapy and hoping that it will help. The doctor is going to be investigating other options, including some sort of surgery to deal with the inflammation of the lung lining. This is something not to be taken lightly and she wants to see if there are less invasive options. The thought of a lung surgery scares me. These are lungs which easily get infected with pneumonia. It's a lot to deal with. I asked her if she thought I would ever be able to wean off the oxygen. She thought at some point I might be able to but admitted that this recovery has been the hardest for me. Last year's bout I was much sicker, in critical condition and seemed to make a better recovery. This time I was only in serious condition in January however it was a very large pneumonia in my right lung, which seems to have a more difficult time.

I am really frustrated. I hated having my suspicions confirmed about the volume loss. I feel as though I am mourning the loss of healthy lungs but telling myself that this is premature. Father's Day is coming and they are showing commercials and that really sinks my spirits also.
It's so hard not to know what's going to happen. There are some many questions that I have and a part of me is afraid to ask. It's clear to me that even the doctor doesn't have solid answers. Medicine is not an exact science. Sad but true.

Hopefully the BIG Day

Today I am armed with printed out reports that I have found about the effects of radiation on the lungs. I meet my doctor at 2 and we will be discussing lots of information, including the chemical makeup of the fluid that was removed. Depending on the proteins in it, we should know where the fluid came from and that will give a lot of information. There is either a problem with the heart or lungs and that should point us in the right direction. I am nervous but anxious to know. I can deal with anything as long as I know WHAT it is I am dealing with. I saw my cardiologist Monday and he spent 45 minutes discussing things. He feels that the problem is with the lungs (as my heart is pumping like a champ.) Both my heart and lungs are small and I carry around extra weight. It would be easier on them if I didn't but I am told that it is not the cause of the problem and while it might help to lose more weight, it might not. Right now my help is coming from liquid oxygen. It is a major inconvenience, especially when I go out and have to carry a seven pound tank everywhere. It is helping me though. I use it connected to my CPAP machine which I sleep with also. So right now I am on oxygen 24/7. I use less when resting than when excerting and adjust the flow accordingly. It's another world with always being concerned about the plastic tubing, it slows me down. Last night I wanted some grilled asparagas and took it off while putting the veggies on the heat and later removing them. I am adjusting but hoping that I won't need this forever.
I want to feel that I am moving forward and slowly making progress to being more independent again. I am very independent and do not enjoy relying on others to help me grocery shop or do other things that I can't do on my own.
I will never again take something like breathing for granted.

Finally....Results

I finally got the long awaited phone call of the pathology and cytology reports on the fluid that was removed. Although it didn't look "normal" it was fine. No cancer cells in it, no bacteria in it, so it was all good. The doctor wants to see me in a week for further discussion about what is going on.

Today was a difficult day. Although I go to lung rehab on Monday, Wednesday and Friday afternoons (with travel this is a three hour commitment), I had today to do other things. The day began with a visit to the hospital lab to check my coumadin. It was finally high enough to stop the injections of Lovenox, which are painful and have my stomach purple and blue. When I arrived there were no handicapped parking spaces and I had to walk much further than when I can get one. I was gasping for breath (yes I had a portable oxygen tank on) as I arrived at the desk. Kim one of the phlebotomists who I see regularly insisted that I not walk back to my car. She located a wheelchair and was kind enough to wheel me out to the car and made sure I was inside before she walked away. An act of kindness such as that is deeply appreciated. I then had to go to Pearle where I had to take my sunglasses back as they had an issue. It was hell getting into that place from there handicapped spot but the gentleman fixed the glasses and I was relieved that they were finally fixed correctly. From there I took myself to the grocery store. A pretty well located parking spot there. I grabbed a cart which gives me support and helps carry my purse and the oxygen, and picked up things I desperately needed such as milk and bread.
I realized as I stood in the checkout line that a woman was staring at me. While she looked away once in awhile she looked at me as though I had horns coming out of my head. I locked eyes with her at one point and smiled so that she would realize I was not a monster. She quickly looked away. At lung rehab other patients tell me they experience the same thing. I would never have stared at someone wearing an oxygen cannular. I can't help wondering if they think I was a four pack a day person. I want to tell them that I never smoked. Of course, I tried it but never had a smoking habit. I want to tell them that this is the price I seem to be paying for having enjoyed thirty cancer free years. Then I catch myself thinking that it's not really their business and I owe them no explanation. I am still hoping for a diagnosis (other than respiratory failure which the doctor wrote on a work note.) I don't know that she will ever know how much of one problem and how much of another weighs into the problems. I have scars from previous bouts of pneumonia but I have fibrosis from the radiation. I am still hoping that I will not have oxygen for the rest of my life. Right now I am totally dependent on it and cannot return to work without it.

On a completely different note, it's almost Mother's Day. I have a nice basket prepared for my mother. It has a puzzle (she loves having one to work on), a bracelet (Pandora style) with two charms, a book and a mug that says Mom with a matching tea towel. I believe my sister will be here from New York. She is coming an average of twice a month. Her daughter will be getting married in September at a fabulous place at the shore. It will be a beach ceremony followed by a reception. Thank God they are having this in New Jersey because trying to travel with all oxygen would be a nightmare. I would have to have a company send a tank to a hotel and it would be overwhelming at this time. I am trying to help my sister plan a shower here but I am limited in what I can do. They don't want me cooking while wearing oxygen and the minute I remove it, I have real problems. We'll see. Since this is my niece and my Godchild, I want to do something really special for her. She is so adorable, a petite natural blonde that looks wonderful in anything she wears. She also has a flare for fashion and I am so eager to see her gown. Something good to look forward to. I really needed that.

The Waiting Game

This weekend I was in much better shape than I have been. On Saturday I was whipping about with my oxygen line, even going into the garage to search for things I needed. Sunday the pollen was heavy outside and my breathing was not as good. It was disappointing and Monday the breathing was as it was a few months ago. I am frustrated. I am still waiting for the doctor's reports to come back. Supposedly, they will contain information that will help them to know why I made the fluid, and hopefully how I can avoid having it again in the future (although pneumonia can cause it also.) I am trying to be patient, trying to distract myself and trying to accomplish things that I really need to.

I just read the most interesting and wonderful journal entry by Virginia. Click her name if you would like to read it. It made me feel peaceful. She is so knowledgeable about animals and all creatures. I needed that today.

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.