Just wanted to let you know that I made it home from the hospital. But unfortunately, I don’t know how long that will last. I have had lots of complications with this surgery and I even learned about a complication that arose the other day when I had the ketamine infusion/coma. Gosh…. I really need to get help and help fast. I really need to get to Mexico before it is too late. As of right now though, our main concern is to get to California to buy time so that I can at least make it to Mexico. We are scheduled to leave in 4 days to California to see doctors at Cedars-Sinai Hospital, but like usual, it is all dependent on the availability of funds.
I really need to get to Mexico to have the radical Ketamine coma performed or at the very least to get to California to have my colon removed as soon as possible because I don’t know how much longer I can undergo this new way of life. Since my colon has stopped working, I am forced to undergo surgery every week to vacuum and suction out my colon and intestines because there is so much liquid in them and there is no place for it to go. I cannot move it through and as a result, the colon is all dilated and it is filling up the pelvis and exerting pressure on all the organs in the abdominal cavity (especially the pelvis region) and causing them to shut down. The doctors are extremely worried that the colon is going to perforate or rupture, and that I am will go into Sepsis. If that should happen, I most likely will die.
I am really fortunate to have such a loving and caring dad who is able to take me to all my appointments, procedures, treatments, etc. on top of working so hard to try to provide for the entire family as well. We have so many bills to pay and money isn’t the easiest thing to come by. Not only are we having great difficulty paying for my medical expenses, but also we cannot pay our mortgage, utilities, food, etc. But my dad is working harder than ever to try to make ends meet and provide all that he can. I feel so bad because no matter how hard he works, it just isn’t enough. The bills are just snowballing out of proportion and I still can’t receive the essential lifesaving treatment that I need and the bills just can’t be paid, as they should be.
My disease has really taken a toll on the entire family. Yet, all my dad continues to say is “I am not going to let you die” and he is determined for that not to happen. But he doesn’t realize that it is not in his hands. I just hope that he doesn’t also kill himself in the process because he is working so hard and he is no youngster. I need him more than anything and if anything should ever happen to him, I would NEVER forgive myself. I already feel bad for all that I have done to him because he is at the age where he should be enjoying himself. Yet, he has given up his entire life and financial gains (i.e. retirement funds, insurance policies, etc.) to help me get well. He is working harder than he has ever worked to get me well, but I just don’t want to see him get hurt in the end. I do know that if anything would happen to me, he would NEVER be able to handle it. Talk about being a “daddy’s girl,” he only gets 4 hours sleep because he spends the rest of the day working… constantly on his feet… trying to make money so that I can receive the imperative treatment that I desperately need as well as try to pay the bills so that we have a home to live in. My dad is really the most awesome person that can exist. He is like a superhero!
Like always, my dad was there today to hold my hand and get me through another surgery. Thank goodness he was there because I wouldn’t be able to undergo any of this without him. He is not only my dad, but he is my very best friend. Even though this disease has wreaked havoc on my family, one positive thing that it has done was bring my dad and me so much closer. It created a bond that no one can break!
Anyway, I was so glad that my dad was there today during the surgery because it wasn’t an ‘easy’ one. I am getting worse in my condition and surgery, which is already dangerous, is getting riskier and risker. I am very weak and fragile and to be honest, I don’t know how much more my little body is going to be able to take. My blood pressure and pulse are so very low that it even amazes the doctors how I am still functioning. When they took my blood pressure today, they were shocked to find out that it was only reading around 65/35 with a pulse of 43. That is extremely low even for the fittest athlete, who is supposed to have low blood pressure and a low heart rate. To think also that these is my “awake” values too and that when I am sleeping or sedated that it drops even further. It really doesn’t have room to drop because they are so low already.
I also learned today from the doctors talking with my dad that there was a crisis that occurred the other day when I went for the Ketamine coma/infusion. I found out that I needed intervention because I wasn’t getting enough oxygen. My dad is used to hearing the machines alarm because my blood pressure and pulse drop very low at times, and therefore, when the machines alarmed the other day when I went for the ketamine, he didn’t think anything of it. However, when the doctors came in and saw that the oxygen level was dropping and only reading in the 70s, they knew that it wasn’t just a matter of it just being the “usual” drop or having the usual low blood pressure readings or something. There was a real problem going on.
Apparently I wasn’t getting enough oxygen while I was under the Ketamine because I had collapsed my trachea. Therefore, it caused the oxygen content to drop to in the 70s, which of course is extremely dangerous. The doctors literally had to unfold my trachea and prop me up with pillows because it appears that my trachea is losing its strength that when I tilt my head, it collapses. It no longer has the strength to remain open. So the doctors unfolded my trachea and fixed it because it was basically collapsed and then propped me up with pillows so that my head would not droop again and cause the trachea to collapse again. As soon as the doctors unfolded my trachea, the oxygen content did go back up, but I definitely wasn’t out of water. You can still see how hard my lungs are working and how difficult it is for me to actually breathe because even though I was getting more oxygen than before, I was still gasping for air. My dad told me that I was making the “weirdest noises” and basically looked like a “fish out of water.” He said that I was literally gasping. It is amazing what you learn afterwards. If it wasn’t for going for this surgery today, I wonder if I would have every found this info out. I definitely would have wanted to know the other day when it happened, but I guess they didn’t want to alarm me.
So I am really weakening over all, and it really doesn’t honestly surprise me how much difficulty I had breathing when I was under the ketamine. I have been aspirating even more than usual lately, which has been making it impossible to breathe even at home. So no wonder it is getting worse when I am under the Ketamine as well. But this just means that I need to get whatever surgery that I need and definitely the coma in Mexico as soon as possible because they are already worried that my lungs won’t be able to come off the respirators. As I will be on the respirators during the Coma, they are scared that they are going to have difficulty extobating me because my lungs will further weaken when I am on the respirators. My lungs are not strong to begin with and therefore, we can’t afford for them to weak much more. Something really has to be done because the longer we wait… the more dangerous the actual procedures are getting, which are already extremely dangerous!!
The staff at the hospital though is so nice though and they really know how to handle me. As I can’t be treated like the “typical” patient because I need special care and such because I am extremely hypersensitive to everything including the slightest touch, they all are aware of my special needs. They are all very attentive and they make special arrangements so that I will be as comfortable as possible.
I am so lucky that the hospital works with me and tries to make me as comfortable as possible because they know how difficult surgery is on me. They usually start my IV in the operating room and do everything right before I go “under” anesthesia instead of prepping me beforehand. They usually prep patients prior to being taken to the OR and they usually have other nurses do the prepping, but I have the actual doctors prep me, start my IVs, and have it done right when I am going into the OR because even the IV causes me significant pain. So the doctors really go out of their way to stop what they are doing and to take care of me whereas they expect all the other patients to be ready and waiting for them so that when the OR opens up for them that they are “ready to go!” They also go extremely slow and explain everything to me that is being done, as they are especially careful not to do anything that might exacerbate my condition or disease because they know that even the slightest touch causes me significant pain.
In addition, they also give me special medication to help with putting me to sleep because even the intravenous drug that they inject you to put you to sleep, which is Propofol, is extremely painful to the normal patient. Since I am extremely hypersensitive and cannot even tolerate saline to run through my veins, it is like having razor sharp glass running through my veins and I want to literally have my arm cut off. So they usually give me a mixture of drugs beforehand along with Lidocaine to help ‘dull’ the pain.
The doctors also allow my dad to come into the actual operating room with me and he gets to stay with me until I am sleeping. No other patient really gets this treatment, so I am thankful that they allow me to have him tag along because I really feel more comfortable with him coming and being there when I close my eyes to go under. I always feel that nothing can go wrong when my dad is there so I am so much more at ease when he is there. Even though my dad cannot remain in the OR during the procedure, they make sure he is in the recovery room as soon as I awaken.
My dad is so funny though because ever since I got him an iPhone, which he was the last person on the planet to switch from a flip phone and join the technology age, he literally does not stop using that phone. It is constantly in his hands and he loves checking his mail, going on the Internet, etc. For someone that had absolutely no interest in a “smartphone,” he really can’t get enough of it. Besides having his obsession with his phone, I guess boredom must also set in because what else can he do when I am ‘sleeping?’ Therefore, he usually takes his phone and takes pictures of anything that he can. You can’t imagine the pictures that I have seen him take because not only do I get pictures of me “sleeping” and under anesthesia and everything, but I have seen pictures of IV poles, machines, dust, etc. I even have seen selfies of him that include him of his teeth, his bald spot, his watch, his eyes, him making faces at the camera, etc. My dad is a real “winner!” I never know what I am going to wake up to see! So when I am out… unfortunately I can never be too careful because he is there to snap pictures of everything!
I just hope that I don’t end back up in the hospital tonight or that something else isn’t wrong. I don’t know if it is something to worry about or if it is because that I am just really thin, but I have a huge bulge in my lower abdomen where my colon is. I don’t know if it is because I am really thin and you can see everything that they did or if there is something really wrong with my colon or intestines such as if they are perforated or something from being “blown up” and suctioned. The doctors literally had to go inside my colon and intestines and “blow them up/dilate” them to go inside. Then they went inside and vacuumed the liquid/mucous out. I am so scared that there is something wrong because there is this bulge. Yet, I don’t know like I said if there is something to worry about because I see like my intestines bulging out or it is just because I am just extremely thin that you can see everything that they did still and the intestines are still dilated. After all, I only weigh in the 60s and therefore, you can imagine how small my abdominal cavity is… so who knows if there isn’t something to worry about. I called the doctor and I am awaiting a call back. I am just crossing my fingers that there is nothing to worry about.
The doctor did say that there was lots of mucous and liquid when he went inside. They did do a bit of vacuuming/suctioning, but of course it is only temporary. That is why I have to undergo it weekly. There is only so much that they can do because it is so much and so thick that it even keeps clogging up their machines.
I just hope that everything is OK and that I don’t end back up in the hospital because like I said before… I am hopefully leaving on Tuesday for California. It is going to be a long trip there, and I am really fearful about the traveling because traveling is definitely not easy on me whatsoever. It really severely weakens me and exacerbates my condition, and I really can’t afford it at all because I am already doing so badly. Yet, I am hoping it might not be so bad because even though we do have a stopover… at least we don’t have to worry about changing planes. But it still is a huge trip across the country. We are leaving about 6 AM and we won’t get to LA until about 1 in the afternoon (California time). So essentially I will be traveling close to 9 hours. I am just hoping that I get to see some Hollywood stars or something. This is the first time I am every going to Los Angeles and I have all these expectations of Los Angeles. I have always wanted to go there and I wonder if it is just like it shows in the movies. In such a place like Hollywood where there are so many stars, I am hoping to run into at least someone. That would really make my day if I met someone famous.
In the meantime, I just gotta hang in there until Tuesday and hope and pray that I get the funds available to go to California. It is basically almost here so I am crossing my fingers that I will receive some donations in the next few days so that I will be able to put it towards my trip.
I have also been trying to do some reading. I have just started a new book from one of my favorite authors. The book I am reading is called NYPD RED 2, and it is written by James Patterson. I have tried to read almost every single book of his, but it hasn’t always been successful. I guess when you have written as many books as him, it is hard to have all books to be interesting and bestsellers. But it is amazing how many books that he has written and he just keeps on going. It is like every month he comes out with another new book. He is just a writing machine!
Mother’s Day is also approaching, as it is tomorrow. Mother’s Day is usually associated with gifts, flowers, and breakfast in bed, but unfortunately, I can’t give this to my mom. I feel so bad because Mother’s Day should be a day of rest and pampering! It should be a day where my mom will be showered with flowers, jewelry, sweet cards, and breakfast in bed. Yet, instead of being able to do all this for my mom, it continues to be just any “ordinary day,” as I can’t give her all that she deserves or take her to places or restaurants or even buy her gifts like other daughters can. It is just the “Same Old Crap Day” in our house unfortunately. So I hope that you don’t mind if I take this time and opportunity to talk a little about my mom and tell how wonderful my mom really truly is because I not only have her to thank for giving me life, but her love and kindness have truly made each day very special to me. To me… Mother stands for: Magnificent, Optimistic, Trust-worthy, Heroine, Entertaining, Romantic. When I think of my mom, I can only think of one word… “Angel!”
I can’t thank my mom for all that she has done for me, and I only wish that I could make her day “special” for her by taking her out to dinner or by buying her something special. But due to lack of funds and the inability for me to go out (especially for me to go out to eat), it really is an impossible feat. I feel so horrible that I can’t take my mom out to dinner and treat her to a nice dinner at a beautiful restaurant like other mothers, but not only do I not have the money to do so, but I cannot eat there either. I feel so bad because she has given up her life for me and she shouldn’t have. We haven’t been on a family vacation in about 10 years, we don’t go out to eat, we don’t go out and participate in any “social” activities, she never gets to buy new clothes or anything else nice for herself, etc. My mom has literally spent the last years cooped up in the house taking care of me. Even when my dad and I travel to appointments, my mom is the one who is left behind to take care of the business, house, and all the other stuff that needs to be done. She is really one terrific mom and I can’t thank her enough for all that she has done for me throughout the years.
My mom has played such a crucial role in why I have made it so long. She has always been there for me, and that is why I love her so much. Mothers are like angels on Earth, as my mom has always been there to cheer me up when I am sad, make me happier than I ever could be, take care of me when I am sick, and be there to always support me. My mother’s love is unconditional, unbreakable, and unforgettable. She is always there to make me feel “loved” and to make me smile… whether it is by receiving cards, letters, balloons, flowers, stuffed animals, or just by simply talking to me. My mom always sacrificed a lot for me and always put my happiness ahead of her own. My mom has stuck behind me and was with me in good times and in bad… never leaving my side. Even though I always surrounded by an immense amount of pain and the struggle to survive, I am so thankful to also be surrounded by my loving mom.
My mom is one terrific person, and her presence is so precious to me. Her bravery is and courage does not go unnoticed, as she never shows her fear, despite being filled with it. She constantly shows great strength even though her body is purely exhausted. She is always there to meet my daily needs with caring hands, and she is always telling me I am a “little trooper,” and that my will to live was stronger than my illness. My mom understands me when no one else does.
In 1914, U.S. President Woodrow Wilson officially recognized Mother’s day as a national holiday. One hundred years later, the holiday has become a global celebration to honor the mothers who made sacrifices to raise generations of children and support them through adulthood. This day should exist more often so that we stop to celebrate the most beloved, the most trusted, and the most sought after women in the whole world. I just want my mom to know that I love her so much and I would not be here today if it wasn’t for her. As the Jewish proverb goes, “God could not be everywhere and therefore he made mothers.” I would never want any other mom in the world. Most of all the other beautiful things in life come by twos and threes by dozens and hundreds. Plenty of roses, stars, sunsets, rainbows, brothers, and sisters, aunts and cousins, but there is only one mother in the whole world. Throughout the years, my mom has always been by my side. I couldn’t have had a better mother to look up to. I only hope to get better so that one day I can become a mom just like my min as she has set the best example for me to follow and look up to
Well… I am going to get going. I had a very trying day and I am not feeling well. I just wanted to update you and let you know all that has occurred. I am planning on writing again prior to leaving to California, but if I am unable to do so, I will write as soon as I know anything.
I also want to add that I am $90 away from hitting $25,000.00 from when I first started my fundraiser at www.gofundme.com/fallonmirsky. I really hope that I will be able to hit that number! Unfortunately though even though it is great that I raised that amount of money, it has taken since the day before Christmas in 2011, to raise this amount and as a result, the medical expenses that have occurred have far outweighed that amount. It would have been great if I made that amount in a ‘short’ time like the time I have been asking just for Mexico. However, even though it does state that I raised $25,000.00, unfortunately it was from before I had the trip to Mexico and some of the funds had to go towards medical expenses to pay for past surgeries, medications, etc. that existed prior to Mexico. If only I could raise this money in a shorter amount of time, it would really be great. Don’t get me wrong, I am really thankful that I raised that large amount, but it really isn’t that great of an amount when you take into consideration how expensive my medical illness costs me and how much I paid during the 2 years that I raised it. If only I can raise this amount in a shorter time.
I am hoping and praying that through the help of others that I will be able to get well and be able to get the necessary treatment to save my life. However, in order for that to happen I of course need plenty of donations. Even $1 is one less dollar that I have to come up with and is very appreciative. So if you can please help spread the word, I would really appreciate it. Hopefully I can raise another $25,000.00 really soon and it won’t take me another 2 years to do so because I will never make it. I really want to be around to celebrate the next Mother’s Day with my mom!
Thanks again for all your support and encouragement. I can’t thank you enough for it because it has been getting more and more difficult to push onward. Yet, it is through your support that I am able to conquer each hurdle and keep moving forward.