I just wanted to write a little message now to let you know the absolute latest, as the big surgery is in the morning. Please say a HUGE prayer for me because I am desperately going to need it. It is definitely going to be a long day in the morning, but hopefully all will go well in the end. However, I do want to let you know that we have had a HUGE emergency occur within the last hour or so.
Thank goodness that I am having the surgery today though because we have a real emergency going on now, as something really unexpected occurred. Some might say it happened for a reason… because I was thinking of canceling the operation, but either way… I am really freaking out. I was thinking about canceling the operation because as you might already know, this operation is not covered by insurance. As a result, we have to pay out-of-pocket and we cannot afford it by ourselves. We have tried to fundraise, raise money, etc. but nothing has really occurred. So… since all my treatments are extremely expensive and we are having extreme trouble affording them (despite all the cuts that we have made), I was really thinking about canceling this surgery as well. However, now because of what has happened in the last 2 hours, I don’t foresee that happening. In fact, it is literally impossible for that to occur.
I was just thinking about surgery in the morning and then all of a sudden the bone in my jaw crumbled. I have a huge gaping hole in my jaw now and my nerves are all exposed. The freakin osteonecrosis and dead bone went. It was all supposed to be worked on during the surgery and it crumbled now… beforehand. What timing! You know? A few hours too soon! Obviously it couldn’t make the final hours.
So now I don’t know what is going to happen. I am really scared. I am scared for the surgery tomorrow, scared for what is happening now that I have this huge gaping hole in my mouth, scared that I am going to need more surgery now than before, and scared for the amount that this is going to cost me. All I keep hearing is “ca ching ca ching” because I know that this is definitely going to increase the cost of the operation and I have no idea how on earth I am going to afford it, especially since I couldn’t afford before all this occurred. I bet this all occurred as a way of ‘forcing’ me into the surgery because now I have no choice but to undergo it. Even though I was thinking about canceling it, there is absolutely no way I can avoid it now. Thank goodness though it happened now though with surgery in a few hours. It could have happened way back when surgery wasn’t even scheduled and I would have to wait for some time to first schedule surgery and for everything to get organized.
I am so scared and in pain though and wish that it was all over with already. Not only do I have the suffering from all the pain that I had already from the osteonecrosis, the nerves being exposed, the bones, the teeth because it is still occurring even though part of it did ‘cave’ in, but I now have this huge painful and gaping hole in my mouth with even more nerves being exposed. I also have more dead bones protruding through where the breakage occurred along with the jagged edges because it of course wasn’t a ‘clean’ break! The pain is just out of control. I am normally in such a lot of pain, but now that this has occurred, I am just in such an enormous amount. I am on so much pain medicine do, which includes Morphine, Dilaudid, Methadone, Nucynta, Ketamine, etc. and I am still suffering this much. I can’t imagine (nor do I want to) what it would be like if I wasn’t on all these drugs. Thank goodness for that. I just can’t believe that it is happening to me.
You know what else worries me? I am also very nervous because I am scared of what is going to happen with getting “sicker” because I have all this dead material floating through my body!! I have all this bacteria and dead bone and dead cells that are leaking into my body now, and I swallowed so much of it. My body can’t fight off diddly. I know that was one of their biggest fears of the surgery was the infection afterwards that I possibly could have gotten. Now I have all this looming in my body because they were hoping to keep it all prevented and contained. Obviously that didn’t happen. The doctors were very afraid of me getting an infection from all this dead bone and such because I can’t fight anything due to my complicated condition. I can’t absorb medication and therefore, if I were to get sick, I would have basically no way to fight it. In addition, I am extremely hypersensitive and everything is magnified for me. The simplest infection is huge and disastrous for me. So this can be a real problem for me.
The doctors knew that getting an infection from this dying bone was a real big risk because dying bone carries a huge chance of getting an infection. However, they were hoping to diminish the chances of that occurring by containing the infection and dead bone as much as possible because they were going to remove it themselves and it wouldn’t spread. However, now that the whole thing ‘caved’ and ‘collapsed’ I literally have all that bad stuff floating all throughout my body now. It continues to come out of the bone as we speak because I have no way of stopping it. In addition, the dying bones that caved in were swallowed and all that dead matter that could have been infectious is now in my body. My body literally has no way of fighting all this off, so I don’t know what is going to happen. I guess I will see in a few hours. I guess I will need lots of antibiotics and prayers, and all I can do is hope for the best.
When all this occurred, I immediately called in my dad. I woke him up from his sleep and he had no idea what was going on. Of course he quickly snapped out of his sleepiness once he realized what was wrong. I asked him if I should call the doctor, but he said that I shouldn’t because it can wait until I see him later today. After all, I will be seeing the surgeon in a few hours and there really wasn’t anything he could do right now anyway. My dad told me that the surgeon probably would say that he would “see it and take care of it when he sees me in a few hours.” My dad was probably right and therefore, I decided that I would just hang out and wait it out. I also didn’t want to call him because it was after midnight and he needed his sleep. After all, he needed all the rest he can get for the big surgery today because it is going to be a very long and intense day. We wouldn’t want him to be ‘sleepy’ in the operating room or “bushy eyed!”
So here I am… Just waiting for morning and for my day to begin. I am getting such a huge headache and I feel so horrible. My entire head and jaw is having spasms and it feels like my entire right side is being clenched down. My entire right side of my head down my neck too feels really weird, heavy, and in pain. I don’t know what is up. It is probably related to all the dead bone that broke off and the gaping hole that is in my jaw. But I will just thank my meds right now for handling the pain because I am sure it would be a lot worse if it weren’t for them. Like I said before, I am not on no little amount either!
So I am all packed basically and ready for the hospital. The surgery is supposed to be over 6 hours long. Hopefully all will go well. My dad is supposed to be spending the night because he is supposed to be keeping “watch” over me since I will be under ketamine. Since the doctors and hospital aren’t really familiar with my condition and I can’t be treated like a regular patient, my doctor suggested that my dad stay with me and instruct the nurses and doctors about me when they came into the room so that I could get the necessary care that I needed. After all, the slightest move could cause me extreme pain and possibly spread the disease too. I need a lot of care too and attention because of my complicated condition and in this way, my dad can make sure that I get the care that I need.
My surgeon is simply wonderful! He has been in contact with all the specialists in the hospital to ensure that they are all familiar with my condition and me because of how complicated I am. The surgeon knows that they are going to have their hands full as it is, so he wanted them to be as prepared as possible. He also knows that they are going to experience things that they never did before, and therefore, he wanted to try to minimize the amount of surprises as much as possible. But I bet no matter how many times he had meetings and explained things to the other doctors, they will still freak out and such because they did so when I went for pre-op.
My surgeon has already contacted the hospital and already set everything up in place. Usually they start pain management when you get out of surgery and onto the floor. However, my surgeon has already made arrangements to have it straight from the operating room. Of course I will be under ketamine when I have the operation and I will have it afterwards as well because not only will it help with the pain, but hopefully it will also stop the spread of the disease as well because we all know that it is very possible for the disease to spread with this surgery! After all, the simplest trauma can spread my illness and this is MAJOR trauma!
So… I guess that takes care of everything. I downloaded some apps to try to keep me busy. I am surely going to miss my pets. They are my absolute BEST friends. I know Missy is definitely going to miss me because we spend all night together. She is the BEST!
I went for pre-surgical clearance today just to make sure that I was “ok” to go for surgery. It turns out that not only are my bloods bad like usual, but I now also have an elevated carbon dioxide on top of all the other irregular values. My body just isn’t cooperating and it is just shutting down. So now it appears that my cells just aren’t getting enough oxygen! I have been having trouble breathing, as I have been aspirating a lot… especially lately. In fact, when I went for pre-op testing, the doctors were freaking out because they said my lungs sounded like “crap!” I am filling up with fluids and the more I drink, the worse it gets. The thing is that I am so thirsty too and by the end of the day I can barely breathe at all because my lungs are so filled up. I am also getting a lot of edema because of this. So… me having difficulty with my lungs is really manifesting and showing itself now in other ways. I just feel like I am drowning in my fluids.
The doctors have said that in order to help this situation, I really need my GI system to start working, but of course that isn’t going to happen. My GI system is basically too far-gone. Therefore, I need a multivisceral transplant, which includes getting a stomach, small and large intestine, pancreas, and liver. However, it it’s extremely risky and dangerous, as it is the most dangerous transplant you can have. However, it is very expensive and of cost we cannot afford it on our own. Therefore, we are really desperate for donations because otherwise there is no way that this is going to occur. I am literally dying and my body is shutting down. I desperately need this transplant in more ways than I can tell you.
The doctors also want me to stop eating and drinking because I am filling up with fluids. This way if I stop, eating and drinking, I will stop filling up with fluids. However, you can’t do that unless you have another way of getting nourishment because otherwise you will die. Therefore, I really need to go to either Stanford Medical Center in California, Mayo Clinic in Minnesota, or Hopkins in Maryland to get tubes and a central line put in. However, that is very expensive as well, and again… we can’t afford it without help from others.
So my life is basically resting in the hands of the rest of the world because we can’t afford it ourselves. We have been paying for my illness for so long and unfortunately, the well had to run dry sooner or later. Well… the time has finally come that we can’t afford anything anymore and despite all the cuts that we have made (even the cuts in my treatments themselves), we cannot afford anything. It is just way too expensive. We have difficulty paying for the treatments that I need, the medications that I take because I takeover 50 pills daily, and the doctors that I see. Not only are all these things extremely expensive because the copayments add up very quickly and they aren’t cheap either, but they aren’t all ‘covered’ either. That is why I desperately need help from others. Sorry to sound like a crier or a beggar all the time, but I just need so much help and I am suffering so much. I really don’t want to die and I know for that to not happen and for me to continue to receive treatment, I really need the help of others.
I also heard from my bone doctor today. I have severe osteoporosis and the doctors are always afraid that I am going to get a life-threatening fracture. In the past, I have been taking a certain medication that was supposed to build up bone, but unfortunately I haven’t really been having a good result. In fact, I have been still losing bone. In addition, the doctors also think that this drug has been also contributing to my osteonecrosis. Therefore, they will not give me the drug anymore because they don’t want to do anything else to make my osteonecrosis worse. Even though there isn’t even a definite answer that it is making it worse, they don’t want to even chance it.
When I spoke to the doctor today though, the doctor told me how bad my bones were doing. HE told me that my bones were doing so badly, and basically it couldn’t get any worse. He said that I am in the worst shape that he has ever encountered. I was really upset by this news and really wanted to do something about it. I was really scared about it because I knew how bad having weak bones can be and I knew how much the doctors always made a big deal over it because they were scared I was going to have a life threatening fracture or something.
However, the doctor said that there really isn’t anything else to really do for my bones. He said that I was on the best treatment that there (and I was on other thing beforehand), but unfortunately, it still never took. If that medication didn’t work, he said that he doubted that there was anything else that would work because that medication was far superior to anything else. He said that I really needed to work on my GI tract because I have such severe malabsorption that it was also contributing to this. My body is just deteriorating. When is it going to turn around?
I keep wondering when my life is going to turnaround. I have yet to get to live my life. There is so much that I haven’t gotten to do and so much that I want to do. It isn’t fair how I worked so hard in school and I had such dreams to become a doctor so that I could help others, but I never got to accomplish my dream. It isn’t fair that I never got to ‘grow up’ like a normal person. I never got to live on my own, get married, have children, etc. I never got to travel the world and go swimming with the dolphins. So many things that everyone gets to do, I never got to do. I just want to live my life already!
Well, the holidays are just around the corner. I can’t believe how close they are already. Thanksgiving is next week and so is Chanukah. Chanukah hasn’t been this early since like 1888 and it won’t be like this again for another 70,000 years. I can’t believe that it is also going to be 2014 already. Gosh… time is just flying. Maybe I will get a gift this year of getting my life back!! I can hope, right? I hope I was a “good” enough girl so I get my wish!! Hope that between all the holidays that I get it!!
So… I guess that takes care of everything. I downloaded some apps to try to keep me busy. I am probably going to bring FALBEAR and PLUTO with me because FALBEAR goes everywhere with me and PLUTO was bought for me by a very good friend when he went to Disney. In fact, when I got Pluto, Max (my doggie) was so jealous! I took a picture of me kissing Pluto and you can see him just staring at me. However, I don’t know if he is jealous that I am holding Pluto and not him or if he is just mad that Pluto isn’t for him! I am surely going to miss my pets. They are my absolute BEST friends. I know Missy is definitely going to miss me because we spend all night together. She is the BEST!
Well… going to get going because have a big day today. I wonder how long it will take for me to be able to eat (even the very few things that I do… my pops, ices, ice cream, eggs) after I go through with this surgery because I will probably me in excruciating pain afterwards. After all, I am having a mega operation! I already packed a food bag for my dad. Whenever I have a procedure or surgery or coma, I always do that for my dad. I load him up with all these different kinds of foods so that he will be kept “full” and satisfied. This way he won’t starve. Also… I give it to him so that he does’t have to go away from the “waiting area” to get anything because I know that he won’t and I don’t want him to starve. So I usually give him like all these nut mixtures, granola bars, fruits, etc. I give him a lot and you know what? He eats it all! By the time I go under and leave him, he is usually done with his snack bag within the next 2 hours. I always tell him to “slow down” with the eating but he never listens.
Well…Please say a prayer for me! I will let you know how it goes! Until next time!