Well… we are finally in Cali! Yup… We finally made it. I have been extremely ill, but at least I have built up enough strength right now to write. It has been an extremely difficult 48 hours. A lot has occurred in the last 48 hours. It was a very difficult trip to California, as I got extremely ill. I also met with some of the doctors on my team and found out some important information! So the game plan is pretty much is set. So not only am I ill from the traveling, but I am not going to lie, but I am having a hard time dealing with what I have learned so far while I have been here in Cali.
The trip to California was very hard on me this time. Going across country is not easy for me in any aspect whatsoever and it really is a shame that it has to occur because there is no help closer to home. Unfortunately there are no doctors or treatments close to home even though I live in New York and you would think that it would have the BEST hospitals and doctors that there are. However, when you are suffering from a rare and life-threatening illness that is so specialized, you really have to do whatever you can to get the appropriate treatment that is needed and for me that requires going across the country to Cedar-Sinai Hospital in California. The only problem is that it is definitely not an easy trip physically on my body nor is it an easy trip on pocket financially. We have to worry about the traveling expenses, as we have to travel across the country into order to receive the treatment that is needed to save my life.
It is a shame that the best doctors to save my life are across the country. But, you do what you gotta do in order to live. When I asked my current New York doctors why they don’t exist in New York, they give me the answer that the reason they don’t come to New York and exist is because New York is just way too “expensive.” To do the research and live… it is just way to expensive. Since my disease is so rare and specialize, the doctors that are needed to treat me are only found at top research hospitals such as in California. That is why we go to Cedar-Sinai Hospital in California.
Please help to gather funds to help my family and me, as my dad is the one who travels with me and therefore is unable to work during this time and bring an income. Please pray that I will beat this because I am such a fighter! I am a very bubbly, energetic, captivating girl who really wants to make a difference in the world! I have the ambition to become a doctor and to help others so that they don’t have to go through what I am going through! Anyone who meets me would be so captivated by my generosity and smile!
Well… it really has been a difficult trip on me. We really didn’t know if we were going to be able to even go until last minute because of the finances. We really need help in that area because we are struggling like you wouldn’t believe. It is literally snowballing out of control. If it wasn’t for the very kind donations received as well as the price adjustments that were again redone by the hotels and doctors, we would have never been able to come here. It is really a shame too because I desperately needed to be here. It was imperative and urgent for me to come because my life literally depended on it. I am just afraid that if I don’t continue to receive donations, I won’t be able to seek the treatment that I need and continue with the plan that is set in motion. So I am pleading for your help. If you can do anything to help me… whether it is even just to simply spread the word of my fundraising website (www.gofundme.com/FallonMirsky), I would appreciate it.
I really gave my dad a huge scare when we got to California. I was extremely weak and sick when I got to Cali. I was so sick and weak that they literally couldn’t move me or wake me up for like 24 hours. I was out cold. My autonomic dysfunction was going haywire, as I was breaking into cold sweats and hot flashes, but of course I couldn’t actually ‘sweat’ because I lost that function because of the illness. We really thought that we were going to end up having to call an ambulance, but like always… I held on and pulled through. I knew something wasn’t right when we were packing for the trip, as my intestines has a bulge in it, but I just chucked it up to being “part of my illness” and thought it would “pass.” Well… it didn’t and it only worsened on the plane. In fact, it worsened so much on the plane traveling that I became so weak that I could barely keep my eyes open and my head up. The flight attendants even made remarks to my dad about the way I looked.
I have the best dad in the world though. He always makes me smile and always is there to hold my hand when the chips are down. In fact, when I was so sick when we arrived in California, not only did he take great are of me, but he found a rose and put it in a cup and brought it into the room for me to keep at my bedside. It was simply gorgeous and one of the nicest things someone has ever done for me. He definitely surprised me. He is the best.
No sooner did we arrive in California, but I received bad news. I had literally just got off the plane and was waiting for my baggage when the phone rang from the surgeon’s office to say that the surgeon was not on my insurance plan, and they wanted to know if I still wanted to see the doctor. Are they kidding? Even if I saw the doctor, what good would that do me because that doctor would not be able to do the surgery at all because he is not on my insurance plan. This would mean that the surgery would easily cost me hundreds of thousands of dollars because the surgeon wasn’t included. No way could I afford that. I can’t believe that the office even asked if I still wanted to see the doctor. I was literally freaking out because it was as if I made this journey across the country now for nothing because the surgeon couldn’t see me and I was already feeling really ill. So I called my head doctor and literally freaked out on him.
I was honestly ready to turn around to go home because this trip was going to be worthless if I couldn’t see a surgeon. I mean the whole point of this trip was to see a surgeon and to get surgery. So when I called my doctor, he investigated and found another great doctor to do the surgery. It turns out that barely any doctors that can do the surgery that I require take my insurance. We have the worst insurance plan. I mean it is a great insurance plan for the average person, but for someone as sick as me, I really need to have a better insurance plan and unfortunately we can’t afford it. We already paying top dollar on health insurance as it is and there is no way that we can afford a ‘better’ insurance. But honestly… there are a lot of worst insurance plans, so I shouldn’t complain so much because it can always be worse.
Luckily my doctor was able to find a doctor willing to take on my case and willing to take my insurance. Of course I am not going to be fully covered and therefore I will need to come up with copays, deductibles, and other amounts, but at least he is willing to take my insurance to a point, which will help a lot. My illness and this surgery will cost so much money that I will need as much help that I can get. I need the insurance company to pay as much as possible because I really can’t afford anything. So it is really important to raise money in the very next few weeks and as soon as possible because even though I do have the insurance paying for the surgery somewhat, there is still so much that I will have to pay for. Not only do I have to worry about the traveling expenses, but also I have to worry about the co-payments, deductibles, and all the funds the insurance isn’t covering… which are a lot. After meeting with the doctors today, I also found out that I will be having to make one more trip to California prior to the massive surgery to have one more “minor” surgery and to have pre-surgical testing. So I really need as much help as possible if this is all going to happen.
Well… I met with the doctors today and had some tests (to see how well my rectum and esophagus functioned). Well, actually tomorrow more is like a “exploratory surgery” in preparation of the more major surgery that is yet to come. I also have one more test to do because they tried to do it today but because of my illness and such, they couldn’t do it. So they thought that they would do it after I had the surgery tomorrow because it entailed having a catheter inserted like an Naso-gastric tube and I couldn’t tolerate it. They figured that they would do it after the surgery instead because they would insert the tube while I was “under” sedation instead of having me awake while they were inserted it like they were doing today. By doing all these testing and exploratory surgeries, they are mapping out exactly what they are going to be doing.
They think that the reason that I am filling up with fluids so much and ‘drowning’ in my fluids is because I am aspirating as a result of my esophagus not working. They are thinking that I might very well need surgery on this as well. Therefore, they wanted to actually examine how the esophagus was working by doing a manometry test. However, they were unable to put the tube in me because it entailed going up your nose and down your esophagus. You should have seen me, I was trying to figure out which nostril was the bigger one before they started to find out which would have the most room to have it inserted in. I just couldn’t sit still while they were doing it. They even tried numbing the nostril with lidocaine and a q-tip, but I just wouldn’t cooperate. My dad tried to restrain me, but it wasn’t working. Due to my autonomic dysfunction, I was just not tolerating anything. That is why the doctors decided to proceed with doing this test tomorrow after the surgery because in this way I would be sedated when they inserted the tube.
The doctors also wanted to see how well my rectum functioned because that would determine if a bag was needed. I am really against having a bag, as that is one of my worst nightmares. There are 2 things that freak me out and I fear will happen to me. I fear getting a bag and a tracheotomy. They were hoping that they would be able to hopefully just remove the colon and connect the small intestine directly up to the colon if all was functioning. I was really nervous during this test and it was extremely uncomfortable. But you do what you have to do in order to find out things.
I also met with the doctors and surgeons and the game plan is set. I am really having a hard time dealing with it because I will be honest with you… it is a big ball to swallow. I really don’t know how I am going to be able to go through this. I am really going to need the support of everyone… not just financially, but emotionally as well. This is going to be one of the hardest things that I have ever occurred. The doctors said that this will be the biggest surgery I have ever had and the biggest battle I have ever had ever had to face. They said I would essentially be fighting for my life because not only is the surgery dangerous, but I am very medically complicated and as a result, I am a great medical risk. The chances of something happening to me are extremely high. But we really have no other choice but to go through with this surgery because without this surgery I will die.
Even though I am so scared of this surgery and will literally be battling for my life, at least it will give me a chance. The only thing is that I am really scared because one of my worst fears is coming true. It is amazing how something you fear the most always ends up happening. It turns out that I will end up having to get a bag after all. I really didn’t want to hear that at all and really freaked out when I did. I am really going to need as much emotional support as possible with this because to be quite frank with you, I don’t think I can handle this. I am strong and have been through a lot, but this “bag” is one thing that I don’t think I will be able to handle. Everytime I think of the bag and having my intestines coming out of me so I can go to the bathroom into the bag, I literally get so nauseous and sick to my stomach.
The only thing that is keeping me going is that the doctor said that this bag is hopefully only going to be temporary. The doctor said that due to my horrendous medical condition and how complicated the surgery is, they will be giving me a bag initially, but they hope to remove the bag after about 6-8 weeks. But of course there is always that possibility that it can become permanent as well, and that is honestly what I am afraid of.
As long as the rectum proves to be able to function, they should be able to reconnect me. The whole reason that they are putting the bag into me is because the surgery is really complicated and they need time for the incisions and “seals” to heal themselves. They are going to be hopefully connecting a small portion of my small intestines to my rectum, as the entire colon will be removed. Therefore, they want to make sure that they form a seal and there is no “leakage” because if there is a leakage, I can easily die especially with all the medical problems that I already suffer from. The doctors are extremely worried that I am going to run into problems after surgery because of how deteriorated I am and that is another reason why they are giving me the bag. They rather be on the side of caution and give me a bag and let my intestines and rectum that they connect together heal without having the extra stress of things going through them and possibly having a “leak” or something. This is extremely risky and dangerous surgery. So they want to be as cautious as possible.
This will be one massive operation. The doctors said that it will be about a 10-hour operation and it will incorporate the undertakings of basically every department in the hospital because of my condition. They are really worried and are going to have a full team on staff with me. They are having me go for surgery tomorrow morning to explore what is going on and to get a sense of things better. I will have one more test on Thursday and then they will permit me to go home for a bit while they organize everything and prepare for the last of the “minor” surgeries that need to take place prior to the massive surgery. I will then have to return in about 2 weeks from now that final “minor” surgery where this surgery incorporates having 3 departments. They will be using radioactive stuff and everything finally diagnose exactly what pieces are completely gone and see finally if the rectum needs to come out and how much of the small intestine too. I will also have all my pre-surgical testing at that time too. After that… it is time for the massive surgery.
I will be basically spending a lot of time in California and that is another reason why I really need to have the funds to support me. During this time of course my dad wont’ be able to work and income will definitely be a problem. In terms of the massive surgery, the doctor said that I will have to spend at least 2 weeks… and that is for the normal individual. I will have to probably stay longer considering how medically complicated I am and how if I get an infection or something how dangerous it can be. One minor infection can easily kill me whereas a normal person could possibly overcome it.
Since I have autonomic dysfunction and an autoimmune disease, it really complicates everything. The doctors say that we can’t afford for anything to go wrong because it will easily kill me. That is another reason why they are giving me the “bag” for a little while because we can’t afford to have a leak. One minor event and that is it. Plus, I am located across the country and if something should happen, it isn’t like I can get to California quickly and easily. I would have to go to my local ER or something, which would be unfamiliar with my case and not know how to go about treating me. So it really is a major big deal.
In addition, I will have to come a few days prior to the surgery because they will have to place me in the hospital to empty my entire intestine and colon. This is going to be one difficult process because they can’t even do it now. They have tried every which way to do so… laxatives, enemas, even the stuff that they give you for colonoscopy preps, etc. In fact, I even had an NG tube placed in me that went directly into my stomach and it ended up backing up after only getting about ¼ liter in it and it had to be pulled out because the liquid was coming back out of the tube. So they will really have their hands full on that.
As of the current moment, we don’t have an exact date of the massive surgery. It is all dependent on when they can schedule the pre-surgical testing and that other exploratory surgery that they need. The connection surgery, which is the second massive surgery, will be about 6-8 weeks after the initial massive surgery though. However, I will probably have to make a trip between those two surgeries back to California to have everything checked out and such and to make sure that the second surgery is a “go” before I actually fly out here to have it done.
The doctors said though that they are trying to make everything as quick as possible as they don’t want to wait any longer. They said that time is of the essence and we don’t have time to waste. Not only am I a time bomb and detonating and my colon is completely ‘dead’, but also I am not in the best shape. I am in fact in very poor medical condition and really a great surgical risk. I am less than 70 lbs. and the chances of me having a complication from a surgery are extremely high. Yet, I am deteriorating rapidly and they know I am not going to get any stronger. Ideally it would be great if they could wait and I could get stronger, but they know in reality that this isn’t going to happen. So they don’t want me any weaker than I already am because it is already basically a matter of life and death and we are walking a tightrope with this surgery.
I really love my doctors here. I never met such great doctors. I can’t believe that my surgeon actually gave me not only his email address so I can personally email him and not have to go through anybody else to get to him, but he also gave me his pager number. Can you imagine? He said that if I ever had a problem or question, I should never hesitate to call or page him, and he will get back to me immediately.
In fact, even when I go for all these tests and such, I don’t have a nurse or a tech perform them. I always have my doctors do them. What other hospital has their own doctors do the tests. Usually they have the nurses or techs do their work for them! It is so nice to go to a hospital where they care for you so much!
In addition, when I go for the exploratory surgery, they use special techniques that other hospitals don’t use and it is really much better for me. Due to my extreme gastroparesis, I am unable to move anything through my intestines. This includes air and therefore, when I build up with air in my intestines, it literally takes me forever to get it out because I have to manipulate it out. Anyway, when I go for the exploratory surgeries, they will have to pump me full of air, which is not good for me. It wouldn’t be so bad for a normal person because they can just expel it afterwards by passing gas (or farting), which I really can’t do. Therefore, I have to depend on the doctor to suck out as much air as he can that he put in. However, in this hospital, they don’t use regular “air” which is harder to come out too. Instead, they use carbon dioxide, which is much easier to get rid of as it doesn’t collect and build up. Most hospitals don’t use this because it is much more expensive than regular air.
Everyone here is amazing. Even the people at the hotel are extremely nice. Thank goodness the hospital is so close to the hotel and the weather is nice too so that you can literally walk there because this way my dad will easily be able to get back and forth when I am there. Last time I was in Stanford, he left in the middle of the night and went in the wrong direction to go back to the hotel in San Francisco. Instead of going north, he ended up going south… and it wasn’t until he saw a sign saying Los Angeles that he realized he was going wrong. He went 4 hours out of his way because he was lost. So at least we know that won’t be happening this time.
Well in a few hours I will be undergoing the first of the minor surgeries. I am really nervous, but hopefully everything will go ok. Thank goodness I have my dad here because he takes such good care of me. I don’t know what I would do if I didn’t have him! I know I definitely wouldn’t have made it this far if it wasn’t for him!
Today when we met with the surgeon we were standing outside waiting for the taxi to pick us up and guess what? I saw a bunch of people run over the door of a restaurant. I knew something was happening, so I instantly of course showed my dad. Well all of a sudden a body guard came out with a person and they quickly got into a car and left. In addition, there were paparazzi too and they got in their car too and followed them. Every car that went to that restaurant was an expensive car. We saw a Ferrari, Beamers, Mercedes, Rolls Royce, etc. Also, when the people picked up the cars at the valet stand, they would even wipe them down for them. It really is something here!
I just love California. If I could live anywhere in the world, it would definitely be here. I love it here. It is simply gorgeous. Plus the weather is just simply beautiful. There is no rain, and the weather is warm with no humidity.
So we will see what is going to happen. I am not feeling well and gotta rest. When I know anything more, I will let you know. Like I said… I have the surgery today followed by the test and then another test tomorrow morning. Since there is so much going on and we will be having to return very shortly for the another trip here and money is an issue, my cousin has been very generous and got us tickets to take the red eye home Thursday nite. I am so thankful to him because he really made it so much easier on us. Usually it takes us like 9 hours to get home because we have to stopover and such. Traveling is hard enough on me as it is, but with the stopover… it is even worse. However, we get the tickets with the stopover because that airline and with the stopover is of course cheaper and you make “cuts” wherever you can in order to afford things.
However, thank goodness we were fortunate enough this time for my cousin to come to the rescue. I am honestly so sick and weak that I don’t think I could tolerate traveling a whole 9-10 hours and then changing planes and everything. At least this way it is a straight flight and we will be home in about 5 hours… BIG difference. I can’t wait to go home already because I know I will be in the hospital in California a lot coming up and I am going to really miss my mom and pets. After all, they can’t come with me. The only thing that is going to be hard is that we are leaving at night and the nights are usually the worse for me in terms of pain and such. That is also the time I usually take my ketamine, which I think won’t be able to happen.
So that is the upcoming plans. In a few hours I will have the first exploratory surgery. I will let you know how things go when I know more. Thanks again for all your support and encouragement. I can’t tell you how much I appreciate it. Please continue to spread word that donations are much appreciated at www.gofundme.com/FallonMirsky because we really can’t afford this on our own. All donations will be put to use for medical and personal necessities. Please help me!