Monday, May 30, 2011

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

Tuesday, May 24, 2011

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.

Saturday, May 21, 2011

Back in the Hospital

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.

Thursday, May 19, 2011

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.

Sunday, May 15, 2011

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.

Friday, May 13, 2011

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.

Thursday, May 12, 2011

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.

Friday, May 06, 2011


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.

Tuesday, May 03, 2011

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.