Take my breath away

June28/05


I am getting so tired of this pain in my lungs. I have now been on two different anibiotics for pneumonia and its not getting any better. Personally I don't think its pneumonia, I've have it before and I don't remember ever feeling like this! I would love to just be able to lie down for a whole night. hmmmm, I think I remember what a full nights sleep is like....no maybe not. LOL


Went into family Dr. today, she sent me right over to the hospital for more tests. I think I will glow in the dark if they take anymore xrays of me...LOL First it was a ultra sound on my leg, since I have had some unexplained throbbing pain. Then it was for blood work, then I limped over to the other side of the hospital for a CT scan with dye. I limped back over to the other side of the hospital again by the ER department to wait for the results.


A nurse comes out of the admitting room doorway with a wheel chair and told me to sit down. I looked at her puzzled,,, "why sit down" I asked her... I mean I just spent the last 3hours walking from one end of this hospital to the other.... "Please, just sit down and I will explain it to you" she replied.


I sat, she wheeled me into a cubicle... layed my chart on the bed and said "the Dr. will be right in". She turns and leaves...I'm nervous now!


JJ has been a jem despite the fact that we have been in the "boring hospital" all day. He crawls up on the bed, I sit tapping my fingers on the arms of the wheel chair.


The Dr. comes in and picks up my chart. "We are going to admit you", he announces... "Right now" I ask? "Yes", he replies... "right now".


It seems that my 3 months with lung pain hasn't been pneumonia at all but a blood clot in my lung. Thats right, a blood clot. I could of dropped dead and they wouldn't have known why! My mind is going a mile a minute. Inside, I'm upset, I'm mad! But I keep it together, I have plans to make.


I mean I have a 4yr old with me, N is at work... I pick up the phone and call my yougest daughter. She is just getting off work. She comes over and pickes up JJ and takes him with her for a while till N gets off work. I then call N at work and explain to him what is going on. He agrees to pick up JJ from B, go home and pack me a bag and come back into town and see me at the hospital.


I get settled into a room, semi private and the TV is already hooked up... bonus. The next two days are anything but pleasant. Liquid blood thinners are shot into my stomach every few hours and blood tests every day to see how well it is being thinned out. By day 4 they switch me to just pills Warfarin, aka..rat poison,,blood thinner.... I will be on them for the rest of my life. I have yet another product of Lupus, its called "Hughes syndrome" or sticky blood. http://www.netdoctor.co.uk/diseases/facts/antiphospholipid.htm My doctor explained it like your blood is thick and resembles cottage cheese with caramel sauce on it, it just doesn't flow like its supose to.


My brother comes in and we get talking about this whole blood thing. He tells me that he had some strange antibody show up in his blood work a few years back. It was called "anticardiolipin" antibodies, and he tells me to ask my Dr if that is what I have. I write it down and sit it on my nite stand. In the morning during "rounds" I inquire about the antibody and she promiced to check on it.


I try to get comfortable and push the "up" button to raise my head up some more in the hopes of releiving the pressure on my lung when I breath. It seems like its no use, the constant throbbing when I take a breath is always there. I turn on the tiny TV and try to focus on something else, maybe some mindless game show will take my mind off my pain. I don't do hospitals well. Probably the "control" issue thing, when your in the hospital you don't have much control over anything that goes on. I just want to go home, I need a magic wand and get better faster than what is happening. I miss cuddling with N, I miss J telling me he loves me twenty times a day, I miss my animals... Please let me go home....

Diagnosis

Feb 14th &15/05 –Well Dr. H says that its conclusive that I have Lupus. I sat there stunned and aprehensive about what my life will be like in the future. With all my symptoms, the blood work, the xrays, the CT scan.... well it has a name now. Its no longer a monster. Its name is Lupus.


I try to focus on what he is telling us. N looks as worried as I do. The Dr. hands me a book to read called "Lupus: the disease with a thousand faces". He gives us a run down on what the treatment will be for now. More prednisone for the time being, and a drug called methotrexate will be added soon. I still have to continue to take the ibuprofen and Tylonol. I know I will be calling T and asking her to look up methotrexate on the internet for me.


Dr. H is worried about the shortness of breath so he is admitting me to the hospital, I have to go home and pack a bag. N has been a godsend, picking up the pieces and doing things around the house. He doesn’t complain, but I know he must be tired and stressed out. He works all day and then comes home and has to get a meal ready  and now he will have to come into the hospital and visit with me. How is this affecting him? Would he tell me if it was getting to be too much for him to handle?


The lung tests show that I can breath in ok, but that my breathing out is not what it should be. The xray doesn’t show anything conclusive, maybe a slight amount of damage from the Lupus or past years of smoking, but they aren’t sure on that either. They also did some heart tests so they have something to compare to in case the Lupus starts to attack those organs in the future. What a thought, having your organs shut down or fail.