Transplant
November 20th, 01
K the biopsy came back positive, but it wound up being a very mild case and we are just going to keep an eye on it every 4 months. Otherwise I would probably have to get procedure after procedure done because the likelihood that it will come back is high with my being on immuno-suppressant drugs for the rest of my life. The likelihood it will get worse is small enough to warrant not exposing my body to possible infections and damage from procedures. This whole thing took much too long to get worked out. 3 weeks were wasted with information they could have given me over the phone, but instead made me come in on my scheduled procedure date to explain why I had the option not to have it done and that there was no reason to keep me off the transplant list. 3 weeks. I had to have my husband take time off work to drive me, pack my ass out in the cold and expose myself in a medical clinic where I could catch any number of illnesses at this time of the year. They just don't get it. Oh well, I'm on the list and that's what matters. Also this month I found out that the insurance I got after my cobra ran out, became my primary because I pay the premium on it. So since September, I have technically not been covered for my transplant, because we were approved on my husband's insurance and not mine. Anyway, the financial people at the hospital think they can get it worked out without my having to go off the list again and think I should be covered regardless under my husband's insurance if my transplant comes before they get the approval from the other insurance. Confused yet? Hell, I am. I was sure I was going to have to jump through flaming hoops of dogshit like a starving lion to get approval from my insurance since I just got it, but thankfully they are considering my cobra coverage my starting date with them. That at least gets me by the pre existing health coverage bull.
What's going on with me otherwise? Oh man. Well Im applying for Social Security Disability. I actually qualify for this part. The SSI I do not because of my husband's income etc. Im hoping to get it in the next couple months, but that may be dreaming. It can take forever to get it. I could have been on it since my accident in 93, but I would have gone crazy had I not returned to work. Towards the last few years, it was probably just complete recklessness of me to continue to work, but I have a real case of denial about my health. Also a serious case of ignorant pride. That pride thing still haunts me and makes me do really stupid shit. Anyway the SSD would be welcomed greatly right now. My parents are almost finished paying off their loan to me, and since that is my only income these days, its going to hurt if I have nothing to pay my bills. Like that lease on the Jetta I have rarely driven. Im telling you, the monthly payment on that is a pretty damn high rental payment for something I never get to drive. Luckily my husband is using. It gets much better milage than his Land Rover and since we moved, that is pretty significant in gas costs.
DSHS is going to help me out with a program they have. They are paying an agency that will come in once a week to help with serious house keeping. They are also going to start paying my mom some since she is here with me all day and is in charge of my food preparation, and basically everything, including the most important job of carrying for my son. DSHS won't pay someone to watch my son, so having my mom as my main person here to care for me is pretty essential. Im not sure what they are going to pay her, probably not much since it's technically only for 34 hours a month, but anything will help. DSHS can only supply someone a total of 54 hours a month for me. That is just so inadequate for someone that really needs help, which this program is supposed to answer. But frankly, Im not going to argue, because any help at all is a blessing and the fact they will give my mom some money for it, makes me happy.
We moved in the middle of October. We are still trying to sell our condo. It just went on the market yesterday. Unfortunately this is not the best time of the year to try to unload realty, but we had few options. The new place is still rather disorganized. My husband works hard and late, so he can only get a few things done here and there and there are alot of things that need doing. Mostly shelving and such. The home was built in the early 60's and no one has added closet organizers are anything like that. Silly. So room by room he adds shelves and we are almost to the bedroom closets. One thing not having an organized closet has done, is it has slowly gotten me to pack stuff up I really dont wear and dont ever expect to wear again. Some of that is because its out of style, and some others, because I know I will never be a size 3 or 5 again on the medication I am taking. I will be lucky if I will ever get my chunky but back comfortably in a size 7. I guess my old nickname is back bubble butt. If it means breathing, oh what the hell. I sure was proud of my flat tummy and tiny butt though. Guess I should have gotten more pictures <giggle> We moved back to the south end to be closer to family members in hopes to get more help. I would say I missed the Bellevue downtown area, but since I rarely got out the entire time I lived there, it would really be nonsense. Those thinking of moving there though, I recommend it. Unless you like eating food after 10pm. The whole city shuts down except Wendy's, even on the weekends I swear. They have a million parks everywhere, which is kewl, and water surrounds it. We give Bellevue alot of shit here in the northwest, but I really did like it. I will place picts of the new house up sometime. Im not promising anything soon.
Happy Holidays.
Sept 16th, 01
Set back this week. I received abnormal results on my pap smear, so I have to go in for more testing. This means I cannot be on the waiting list for the time being. More waiting. Now that I have resolved myself to getting a transplant, it frustrates me that I have to do more waiting just to get on the list. I was very disappointed. I'm hoping they can get the results back quicker on the next set of testing than they did with the pap. I don't feel like I can manage too much longer in the state that I am in. I'm on such high levels off oxygen these days and can't maintain the oxygen levels I should. Most of the time I am at levels which are considered brain damage levels. I can tell the difference too. My husband says things over and over again. People give me very simple directions and I cannot follow them. I have to have them take me through the motions as we do something, because I simply cannot remember what they just told me to do. The obvious eludes me and my husband gets frustrated thinking I am just not caring or too self centered to think of others. Which of course breaks my heart. He even accuses me of ignoring him, and it just isn't true. I just can't understand what he is telling me anymore. People say something and I just go blank. I know I should understand what they are saying, but in my head it is like they are speaking a whole different language. Sometimes I sit in front of my computer for a half hour before I actually notice what is on the screen in front of me. I just sit staring.
I'm having a hard time controlling my anger too. I'm not getting violent, I'm just angry all the time about stuff. This is how I felt after my accident. Simple emotions and mostly just anger. I'm swearing a lot more too. This is also reminiscent of after my accident. My language skills are failing me with lack of oxygen to the brain, so I resort to simplistic forms of communication. It is pathetic. Half the time my words do not form a real sentence, I just blurt out a few nouns and a verb occasionally and hope someone can put together what I am trying to say. Most of the time I just want my damn oxygen tank because I half mindedly left it where I was last at and I always need it where ever I go, so I don't know why I can't get it in my stupid head to just drag it around with me, instead of hoping I can get my mother's attention to bring it to me. Half the time she can't hear me because she is half deaf and I can barely get the words out of my mouth.
I'm getting tired of being useless. I dread it every time I am hungry or thirsty. I have to ask my mother to make me food. To get me drinks etc. Same when my husband is home. My son needs a bottle and I have to ask someone else to get it for him, while he is crying at my feet begging to be picked up. Which I cannot do. If my son is crying in his bed I have to ask my mom to go get him. If it is in the middle of the night I have to wake my husband. If my husband is in the bathroom or showering and my son wakes and cries, I have to let him just sit there and cry, till my husband comes out, because I cannot do anything about it. Do you know what it is like to hear your child crying and not being able to do the simplest thing to help him? It breaks my heart. It makes me cry deep down inside.
Stress is killing me. This whole terrorist thing is breaking me down. I cannot deal with much more.
Sept 1st, 01
Through the help of other pre and post transplantees I seem to be dealing a bit better with this. I signed the paperwork for my beeper and am just waiting for them to ship it to me. I am on the list right now however. tick tick tick tick tick
There are so many things you have to give up to accept transplant. At least for me. I had to let go of my fight first and foremost. I was sure if I fought hard enough, researched long enough, I would find the magic answer to save my own lungs. Unfortunately it just wasn't true. I had to give up the notion that I could do everything. I had a baby, I cared for him, I cooked, cleaned and even ran a small side business. I worked myself to further illness. There is a fine line to staying active and actively being a moron. giggle.
I feel blessed that I was lucky enough to be able to do so much in my short life that I do not feel cheated at the thought I may not be here soon. I dated the good, the bad and the ugly before I met a wonderful man which I married. So I have no silly misgivings about missing out there. I got to see a bit of Europe, went to Mexico and have seen a bit of the US. So I do not feel I missed out there either. I even got the miracle of having a son, against all the health odds. I quit drinking some years ago and managed to learn a better way of life. I learned that my family members were wonderful people each having their own special qualities instead of seeing them the other way around. I was given a second chance at the age 22 to make amends to those I hurt and to forgive those that had hurt me. I feel that through all the hardships I have gone through I have become a much better person.
When I remember all of these things, I realize it is all going to be ok regardless of the outcome. If I am gone, my husband will tell my son what kind of person I was, and I am confident that I am a good person to learn about. I married a wonderful man and know he will raise our son well. I know he is a good judge of character and will meet another wonderful woman that will raise our son to be a good man.
I hope of course that I will wake up and be able to start enjoying my life again. I want to take a deep breath. I want to hop in the car and just take off to Canada for an overnighter. I want to grab my husband and run to the bedroom when our son goes to sleep. These are things people just take for granted. These are things I want to be able to take for granted even for a week.
8/28/01
Today I jumped threw the last hoop to get on the list. Soon I will have a beeper to carry around with me to notify me of someone's untimely death. I need 2 lungs.
Reality. 8 out of 10 people live to the first year. 2 of 10 don't. Out of those that lived only 40% to 60% of them are alive in 5 years. There are a few living 7 to 9 and even an 11 year female out there. The oldest living recipient is about 15 years now. Only 40-60% are alive after 5 years. Many come out feeling wonderful for a few years. Some are as sick or sicker than they were before the transplant. I want so much to be one of the lucky ones. After having my lungs damaged at the age of 22 I want a day I can breathe a full breathe of air, just one day.
I was horribly ill on my wedding day. I walked down the isle wearing a canula in my nose and a 50" hose following me. Someone stepped on the cord and unplugged it during the ceremony, causing this horrible siren nose to go off and me to get lightheaded, as if getting married wasn't stress enough. Luckily I have a good funny bone and took it all in my usual stride. My wedding night was spent trying to keep food down my tummy and not having to be rushed to the hospital. Not what you would call traditional. Our honeymoon was spent at the lovely Empress hotel in Victoria. We couldn't fly anywhere, because my oxygen use causes so much trouble on planes. American Airlines tried killing me multiple times soon after our wedding on a trip home to my husbands family in Kansas. I was sick still through the honeymoon and my husband had to wheelchair me everywhere. Good thing Canada is so open with handicapped issues. I got in free to almost everywhere we went. That was a kewl little thing. My husband either got free entrance or discounted for being my little helper. giggle. The good the bad the ugly. Sucks alot, but I am so very lucky to have a husband that takes all these in stride and does everything in his power to make things work. The Empress was truly that. They did everything to make my stay pleasant. They helped us rent a wheelchair, they even found a converter for our land rover and a place to install it, so we could hook up my oxygen concentrator machine in the truck and we could travel around with it, instead of using up all my portable tanks.
I became pregnant soon after we married. This was definitely not planned. We had already set down our beliefs that we just wouldn't have a family. We both wanted children, but pregnancy didn't really seem an option and who in their right mind would allow us to adopt with my health problems? But pregnant I did get. My ob-gyn told me to abort. I even had the appointment set up. Last ditch effort I called my pulmonologist and asked him his opinion. He found us the best high risk ob at the UW. That doctor made it possible for us to have the amazing son we have now.
Look at all this luck. I lived through an accident I never should have. I got married even though the man knew I was dying. I had a healthy happy baby. I am just so afraid my luck is running out. I'm so afraid, that they are going to call me with my new lungs and I say goodbye to my husband and never wake up again. What are the last words you say? See ya later, till the next time I see you again? what? I'm not afraid of dying. I just worry about my husband and son. Not to mention my mom, dad, siblings and everyone else. Is my son going to stop smiling? Is he going to hate me for leaving him? Will I even affect him at all? I've tried making tapes for him, but they seem stupid and useless. What do I say? I just start crying all the time. I need prayers to get through this. I need prayers to get through the sadness. I need to see that this is a good thing and not a bad thing.