Just wanted to write a quick little note of what is happening because a lot has taken place in the past couple of days. In addition I am not feeling well at all tonight. It is a feeling that I never have had before and I am hoping will pass, but if this is the end… I want to make sure that I get this last blog out. I also am hoping that by writing, it will help me get through the night because ideally I should be leaving for the hospital rather than writing this stupid thing… but like usual… I am staying at home… praying and hoping that this just ‘passes.’ After all, the hospital is the last place I want to be because they honestly don’t know what to do with me and only make things worse because I can’t be treated like a typical patient.
I spoke to my doctors in Cleveland Clinic, and they told me that I really need to get to them ASAP. They think that they can save my life and help me, but the trick is getting to them before it is too late. They also told me that if anything should ever happen to me, that I should transferred immediately to Cleveland Clinic. But of course it is easier said than done. We all know how expensive a transfer to Cleveland would be. I am sure that to be heliported… it is something that I am going to be responsible for… which is something I probably definitely can’t afford. I can’t even afford a plane ticket and a regular trip to Cleveland Clinic… let alone a heliported trip.
The doctors at the Cleveland Clinic have the advantage of getting a private plane sent for them wherever they are in the world; the plane will literally pick them up or a family member up and bring them to the Cleveland Clinic. Of course that comes at a cost though. My doctor said that one time he had it done for one of his buddies who go sick in Mexico and when he got the bill, he could have bought a house for that cost. But, my doctor did offer me that option if things got so very bad and nasty as well in addition to going to a local hospital and being heliported right to Cleveland. But like I said before… money is a huge problem and plays a huge role in every decision we make and as a result, I doubt that private plane will be sent here to come and get me.
I’ve just honestly been hanging out tonight and praying that it will all pass. I am extremely nervous because I never felt this way before. I know that I am rapidly deteriorating and even though in the past I have made it through all this “bad” stuff even though we were uncertain if I would last through the day/night…. This time we just are not quite sure. These are symptoms that I have not ever experienced. I always question when to push the panic button.
I don’t want to go to the hospital and be transferred if there is nothing to worry about. Yet, with everything that is happening to me… I don’t know when that time is to “worry about.” I know that in the past I have been fortunate to have these episodes to “pass” but I know I will not always be that lucky…. Especially when I am rapidly deteriorating and I am at the point where the wire can snap and the floor can fall out from underneath me at any time.
So when I asked the doctors this famous question, they really didn’t have an answer for me. They said, “If things are getting worse,” “If things are different,” etc.… much like today. But here I am… stupid me… still holding out and playing the waiting and seeing game. I am still hoping and praying that things will just pass even though I know one of these days I will not be so lucky especially since I am really worsening. It is only a matter of time that something really severe will happen and staying home is going to be the real wrong option. I am hoping that this is not one of these times.
But as I lay here waiting to see what happens and see if it passes, as I am short of breath and having severe chest pains and being extremely weak, I figured that I would write to you and let you all know what is happening just in case something happens and I can’t write for awhile, as well as a way to hopefully pass the time of night so hopefully this is just another time that the longer we wait…it will pass even though everything that I have tried that usually helps has not helped. I have tried all my meds and even had the ketamine tonight, but nothing is working. My body is still suffering with tremendous pain, spasms, pains in my chest, aspirating, thirst, etc. But I made it this long and I am hoping I can make it longer.
In fact… when I speak to my doctors, they are so surprised that I am even still alive. No doctor even believes that I am alive still. They thought that I would have ‘died’ a long time ago because of how sick I am and how much I weigh. After all… we are playing around with someone that only weighs in the 60s. But I have surprised them! I told them that I am a “fighter” and I am the energizer battery. I keep going and going and going. I am going to be their longest living patient. But even though in the past I have been able to fight so well and hide my illness, I have really taken a turn for the worse and to be quite honest with you… I honestly don’t know how much longer I can do this. I know that if I don’t get the help that I need soon… I am not going to make it much longer. I just don’t have the same capacity to “fight” anymore. I am just too tired! I am tired emotionally, physically, psychologically, and medically. I hope you can understand where I am coming from.
Anyway, I think it is important to write about it because not only do I need to get my thoughts out on paper and I promised to keep you up-to-date on everything that is happening, my next step in treatment is really dependent on others and I desperately need it to happen sooner rather than later because I don’t have a lot of time left unfortunately.
I know I have been pleading a lot lately for donations and for help in fundraising… and it can get quite annoying. However, take a step in my shoes because I don’t want to die. I know that I am on the brink of disaster and rapidly deteriorating, and yet… my next step in treatment that can potentially save my life is so dependent on others. We have tried so many years to pay for the care for me and unfortunately with an expensive disease that I have where you have to especially encounter traveling costs because only limited doctors throughout the world are knowledgeable about my illness and when only insurance companies will cover only so very much and force you to pay out-of-pocket because my case is a ‘rarity’ and requires expensive, experimental, and radical treatment… money does run out! It isn’t like I have been sick for a few days or even years either. So there is no wonder why we can’t afford treatment. After all, money doesn’t last forever nor does it grow on trees. So… in order for me to continue to receive the medical care that I desperately need, I really need the help of others because we can’t afford it on our own.
I am rapidly deteriorating and know that I am basically hanging on by a thread. I know how crucial these treatments are and how if I don’t get them, I will definitely die. But, I at least want a chance of living. That is why I am praying and pleading with everyone to please donate and help me raise money. I desperately want to get the funds because I need this treatment to save my life and I am too young to die. I haven’t yet got to experience “life”, as there is so much more to do. I have been diagnosed with this illness at such a young age that I never got to live out my life or my dreams. I never even became the doctor that I always dreamed of becoming so that I could help others. So I still have a lot to do… so hopefully I will still be able to have the ability to have it happen.
Well… everything is basically all set… all I need is the funds to get to Cleveland Clinic. I have been on the phone with my doctors constantly, as I even have their cell numbers. They know that if I have any chance at all… it is with them and it is a matter of getting to them before it is too late. I do have to say that I have never felt so comfortable with a team of doctors or hospital. After speaking to them constantly, I have been soooooo comfortable talking to them. They have really made me so less scared about everything that is going to happen when I get there.
You would think that with everything that I have been through and with all the hospitalizations that I have had… I would have experienced it all and there would not be any fear in me anymore. But to be honest… It is actually the reverse, I am so nervous because I know how hypersensitive I am and how I can’t be treated like a ‘typical’ patient and everything. I know how much worse that I usually get by going to the hospital, which is a huge reason why I don’t go to the hospital when I feel extremely ill and we don’t even know if I am going to make it through a day/night. But, I have learned how the Cleveland Clinic is so different than any other place I have ever been and that is why when I go to the hospital (even here)… the first thing that I say is to be “transferred” to Cleveland!
The doctors at the Cleveland Clinic are simply amazing… especially the doctors on my team. Now I know why they are ranked like the #1 hospital in the United States. My head doctor that is going to be taken care of me told me how much a ‘team’ approach goes into your care at the Cleveland Clinic. Even though I am going to be admitted under the surgeon for the transplant team, he will only be playing a limited role in my care, as he is just the ‘technician’ to do the cutting and transplant. I found that there are specific team members on my team that are terrific specialists and what makes them amazing also is that if they can’t ‘contribute’ big time to a patient’s care… they get ‘fired!’ so the Cleveland Clinic only has on staff the best and brightest doctors as it is!
I also feel better because my head doctor that took over my care is someone I trust. He admitted to me that I am “one big hot mess” and going to need A LOT of care and a lot of TLC. In fact, his actual role in the whole team is to be the anesthesiologist, but the entire team knows he is in charge because whatever he says goes. He is the most familiar with my illness and he knows what I am going to need (basically a private doctor around the clock and someone able to get something done in a minutes notice). Even though he can’t officially “admit” me under his name because he is just the anesthesiologist on the team, the whole team totally recognizes how he is in charge of me. In fact, he not only is the most knowledgeable in my care, and it going to be the most responsible, but he is also head of the anesthesiology dept. as well. He is the most amazing doctor I have ever met. He said that when I make it through this… he is going to write a paper on me and I will be able to ‘coauthor’ it.
He really makes me feel hopeful that things are going to happen. He even said I can call him anytime and if he is ever home and I need him… it would be no big deal for him to come into t he hospital for anything. He also told me that when I am hospitalized that even though he is basically head of the anesthesiology department, he will have his days focused on my care and therefore, he won’t be taking on a heavy case load like he normally does. I told Dr. Keebler that he is the doctor that I only hope that I become because he is such a terrific doctor. I told him also that when I come to see him that I am going to bring him “Keebler” cookies. He is willing to do anything and everything to help me out and be as honest as possible with me about everything. He said he will never lie to me about anything and I can always count on him to tell me the truth. He also said that he would always put me asleep for even procedures that patients are normally awake for. He is just one amazing doctor. Have I mentioned yet how outstanding he is?
Dr. Keebler, which happens to be his name and my miracle doctor as I tell him, knows exactly how I am feeling. Not only does he calm me down, but also he as has restored hope in me that I have lost a while ago. He told me that I could always count on him to tell me the honest and to tell me if I am “getting better” or even “getting worse!” He told me that even though I may not know what he has to say, he will always be utmost upfront with me and honest with me. It really makes me feel good that he will be HONEST with me and tell me everything straightforward because I have had so many doctors just hold me false information or just let me stay in a hospital and let me dwindle because they had no answers. Dr. Keebler knows exactly where we are coming from and understands our circumstances… especially out financial, which is a huge asset!
One thing that totally freaks me out is not being told the truth because due to my extreme gastroparesis, autonomic dysfunction, etc., I have trouble swallowing. Therefore, I can also lose the ability to swallow at anytime. I would hate for this to happen because it would take away my chances to “die peacefully.” I am sure that you all heard of the Elizabeth Maynard story by now. But let me tell you this… I have wanted this and talking about this long before she has… so it isn’t something that I heard and just decided to jump on it.
I don’t want to suffer anymore. I am so tired of suffering emotionally, physically, and psychologically. It isn’t fair that they can put animals to sleep so that they don’t have to “suffer” and yet for humans… we have to undergo all that hurt still. So I have begged my dad over and over again to take me to a state where I can “die with dignity.” With this… it means that I will be in control of my own death and if things get so bad that I can’t take it anymore… I can die at home peacefully. Even though my parents don’t want to hear of such a thing, it is something that I still carry with me everyday and something I think about everyday because I don’t want this suffering anymore.
I did not want this nightmare scenario for my family, which was my family to suffer more and to watch me deteriorate immensely or just lay there paralyzed. Because my brain is still kind of “healthy” and everything and I am so young, I was scared to physically to physically hang on for a long time even though I was suffering from all this. After all, no doctors thought I would have lasted this long and yet I am still here. I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that. So I started researching death with dignity. It is an end-of-life option for mentally competent, terminally ill patients with a prognosis of six months or less to live. It would enable me to use the medical practice of aid in dying: I could request and receive a prescription from a physician for medication that I could self-ingest to end my dying process if it becomes unbearable. I quickly decided that death with dignity was the best option for my family and me. But, of course it hasn’t been an easy process conniving my parents about this and in order to do this option right now, I can’t do it in New York. I am not suicidal. If I were, I would have consumed that medication long ago. I do not want to die. But I am dying. And I want to die on my own terms.
As of right now only 5 states have this ability and in order for this to happen, you have to be able to swallow the pills. I am so afraid that I am going to get so bad, which is a real possibility because I am already having difficulty swallowing and doctors literally have to remove things (i.e. pills) out of my esophagus because they don’t go down and dissolve where they are supposed to, that this won’t be an option to me anymore. I don’t want to be forced to stay like this and have this right taken away from me. So to know that I will have doctors tell me the truth, it really comforts me because I know that I will hopefully still have enough time even with all this to still go through with this plan should it be necessary instead of running out of time in the hospital. You know?
So as of right now I am scheduled to leave for the Cleveland Clinic April 20th. That leaves me about 1-½ months to get funds in order because we know that this trip is going to be extremely expensive, as we will have to worry about living in Cleveland for at least 7-8 weeks. Not only have to worry about paying for the treatment, traveling costs, hotel, etc., but I also have to worry about the medications and treatment cost of the day-to-day treatment here to buy me time so that I can get to Cleveland Clinic at that time. After all, money doesn’t grow on trees and my insurance doesn’t cover everything… in fact they cover very little both because my disease is extremely expensive, considered experimental, have treatments and I see doctors that are ‘out of state’ and therefore considered ‘out of network,’ and even the medications that I do take aren’t covered by insurances. I take over 50 pills daily, which also includes injections. These meds are extremely expensive… even with paying just the copayments. In addition, most of these meds aren’t even covered by insurance, as I have to get them out of the country or compounded especially for me or not even able to be ordered and bought in the United States. Even the stuff that are covered by the insurance such as the appointments, nothing is still “free” and I have to worry about the costly copayments that add up so quickly to astronomical means.
You know it is so sad of what the insurance does pay for. We need help even to help pay for our monthly insurance because if we don’t have any insurance whatsoever, we would be in even worse shape. Yet, it is amazing how we pay so much for insurance and yet when you need it… they barely pay for nothing.
Anyway… I really need to get to the Cleveland Clinic because they are absolutely the BEST place to be. They have drugs there that cannot be given or received anywhere else… which will hopefully help me get through the necessary surgeries that I require to save my life because I am supersensitive and these surgeries can extremely exacerbate my illness and spread it, which essentially can kill me.
Anyway… I am going to leave hopefully April 11th (if they doctors can’t get me there sooner) to start everything. The doctors would love to have me come down tomorrow to get things started, but unfortunately one of the surgeries to complete the puzzle, which is the major surgery to take out my colon, cannot be done until a latter date and although it would be at the very best interest to go and start the surgeries now and this way I can maximize the TPN usage and everything else, we really cannot wait that long in Cleveland until the transplant team removes my colon because we don’t have the finances to do so. As it is with putting all the surgeries together, we will have to stay there for at least 7-8 weeks, which is something we definitely don’t know how we are going to afford. My dad has to work as well because he owns his own business and there are bills to pay. Without him working, how are we going to make money to even attempt to pay for my medical bills or house bills at home? As it is we can’t even afford our mortgage and are at risk of having our house taken away. The bills are snowballing out of proportion at home because everything has been going towards my medical care, and as a result, we have not been able to pay the mortgage or the very necessary bills that need to be paid such as the water and electric bill, etc. We even have trouble buying and putting food on the table. It is just simply a disaster and therefore, the less time my dad stays away from working… the better we are even though it may not be in the best interest for me medically. Yet, I would put myself on the back burner because my family is so important to me. I don’t want anything to happen them. They suffered and gave up enough for me. If anything ever happened to them or they lost the house or anything… I would never forgive myself!
So we really need to have this very well coordinated. My transplant surgeon to remove the colon has canceled all his surgeries because he is writing a huge paper and making a huge presentation at the end of August. So he is just focusing on that right now. But, knowing how horrible I am doing, we are hoping he will be able to make an exception and even though he won’t be around during the week to operate because of his lecture series, we are hoping that he perhaps can operate on a Saturday or something so that he can get both done and essentially I can then have my operation sooner rather than later.
The first step in the surgeries is getting a central line placed in me. I need it not only for surgery because I need emergency access into me and a place where they can replace fluids fast, but I also need a port where I can get nutrition such as TPN. The doctors want to try giving me TPN again through a central line, even though I have failed it miserably in the past because they are so afraid that I won’t be able to heal or make it through the surgery at all because I have no reserves to heal. After all, all I only weigh in the 60s and all my organs (including my brain and heat) are literally shutting down and starving for food!
Yet, any surgery or foreign objects that will be placed in me will cause me great harm and can literally kill me because it will stir up and exacerbate and spread my neurological disease (RSD) as well as my autonomic dysfunction. Therefore, I really need special care to be done to me when I am in Cleveland. Dr. Keebler, the anesthesiologist, will assume the primary role and make sure that I am comfortable and well taken care of. He said that he would prescribe me and use whatever is needed. He said, ‘if I break into autonomic dysfunction and need to be knocked out into a coma or something, I am only a phone call away from the ICU since that is the only place that this can happen.’ I will already be in the ICU plenty because I will be given plenty of drugs including Ketamine, which cannot be administered on a typical regular floor. He also said that I could activate an AMET team anytime… whether I am on the floor of the hospital or even the hotel.
When I activate an AMET team, a whole team will arrive in a matter of 10 minutes; they are a rapid response team for stabilization of medical or surgical in-patients. In addition, they are all buddies of his and he said that will mean that he will constantly be contacted and in the mix. So basically whatever he says goes and I am at a place and working with a doctor that is not afraid of taking chances. Whereas before, doctors and hospital staff were afraid of me because of how sick and fragile I am, he is not afraid. He is willing to do surgery with a heart rate in the 30s, give me as much pain medication with a heart rate like that blood pressure 70/30, etc. Whereas I am passed around like a hot potato everywhere else… I am not going to be one here. They get all the hot cases that no one wants to deal with.
So in short, the Cleveland Clinic Main Campus is a complex system of clinical and non-clinical areas covering several city blocks. A comprehensive MET system for the main campus has been effective in providing rapid response coverage to all areas. These MET team efforts have effectively reduced code blue events in clinical areas, as well as increase awareness and activation of AMET for non-code blue events. We consistently outperform comparison hospitals regarding survival metrics and gold standard metrics in reference to code blue or CPR performance. The metrics can be followed to increase training in in-patient areas with frequent responses and outpatient areas covered by MERT. AMET nurses are currently engaged in team training for many hospital patient care areas. So if I should have anything worsening with my illness or be getting an exacerbation of my autonomic dysfunction, I can activate this amazing system, which will bring me right to the ICU and they will ‘knock me out.’ I will be able to skip the ER and everything else… that is a blessing in itself because you know that can be a disaster going trough there because you can wait hours. Instead, I will be helped in a matter of minutes.
Putting the chest port in is going to be a complicated procedure. There are 3 places that we can place it… one in the jugular vein, one under the subclavical or one in the arm. In terms of getting TPN only… the arm is the best. But in terms being used for both the surgery and TPN, the one under the subclavical probably would work best. It will go right into my heart and hopefully prevent me from having to get another central port when I go in for surgery for the massive surgery to take out my colon.
We all know that this surgery is going to really mess around with my illness and I am going to need a lot of care afterwards. Therefore, doctor Keebler has told me that he will always be around…no matter what time of day to be contacted… whether it is by hospital staff or me. He even said that he would be taking on a ‘lighter’ schedule than usual because I am going to need a lot of care. Who could ask for a better doctor? He is such a caring doctor that was willing even to cancel his vacation in July if I am still there. I told him I wouldn’t want him to do something like that… but for him to offer something like this… you can see how much of a caring doctor he is.
He also promised me that he would be straightforward with me. He said that there is 2 ways this can go… either getting me better or getting me worst. He made me a promise that if I am getting worse, he will be the first to tell me and will not leave it up to my dad, someone who will do anything to keep his daughter alive, to make decisions. He told me that he would be an advocate for me so that I don’t end up living out my last days there or remaining on a ventilator or anything on those lines.
The trick to having all these upcoming operations is first to get this chest port in and the TPN running because I am going to need it in order to ‘heal’ from anything that occurring. So they are going to be using drugs that they don’t use elsewhere. They have drugs there such as ketamine to help, epidurals, experil, and this new drug that keeps you like in a comatose state but when someone wants to talk to you… you will be able to answer. I am not quite sure of the name, but I will find out. The experil is a long lasting lidocaine so it will last 3 days rather than wear off right away. So hopefully between everything… I will be kept comfortable.
I also will be evaluated for a pacemaker. So not only will I have heart surgery to put the central lines in, but I will most likely have it to place the pacemaker in as well. However, we want to see my reaction to the TPN before we do anything. Doctors here always wanted to do a pacemaker, but they were fearful of me because of my complicated history. They said that with the condition I am in and the disease and weight… They want to put the pacemaker under the bone. They can’t put it superficially like they usually do because I’m too small. They said it would be infected too easily and get eroded. So they said that the procedure would be much more intensive than the regular implanting of a pacemaker in a regular patient because I have to have the pacemaker put under the muscle and bone. The docs think the pacemaker is a good idea because even though I may not officially warrant one… With the autonomic dysfunction and everything else… It’s a good idea. After all my pulse drops at night into the 30s and when I am hospitalized they usually have the paddles near me because I freak them out.
The doctors are going to try to make me as comfortable as possible so hopefully I will be able to tolerate enough TPN because I will definitely need it for the upcoming surgery that will be taking place May 11th, which is when my colon is being removed. That is going to be one massive surgery, but I am having the best surgeon in the world do the surgery. In fact, when we heard that my surgeon was going to be no accepting cases for awhile because of the fact that he had his paper to do… we tried to get in with another team such as the colorectal surgeons, and the surgeons said that I was way too complicated and need to be with Dr. Kareem, who is the head of transplant.
One thing that bothers me about having surgery this time is that I will miss my kittie’s birthday. She will be turning 11, but I told her that we will have the biggest birthday party before and after. After all, she is my best friend and she is the one who has been helping me get through all this, as well as being my babysitter. She will literally alert my parents if something is wrong with me. It is amazing. Even when I am upset, she literally will cat talk to me (“meow”) even though I don’t understand her. I don’t know what I would do without her. I only wish I could bring her.
These surgeries are going to be extremely massive and extremely complicated. In fact, I don’t even think that I am saying as much as what is really happening with what I am writing. It is so hard to explain because of how much is occurring. But what gives me the biggest sense of relief is to know that if my autonomic dysfunction should act up, they will just rush me into the ICU and knock me out so I don’t feel anything at all as well as if things start to go wrong or there is no hope, my doctors will tell me and will be my biggest affidavit. I would do anything not to disturb the autonomic dysfunction because once that is disturbed… the illness goes haywire. It is the worst thing that you can imagine.
My team of doctors is the greatest. They are going to do anything and everything when I get there to help me. Everyone in the hospital is going to know me so they will know how to handle me. What a way to be famous, right? I did tell the doctors that I plan on going to Medical School when I am better and fulfilling my dreams… so with all these medications that they are giving me, I didn’t want them to keep messing around with my brain.
Gosh I can only imagine if this surgery can work and my body accepts the TPN. Unfortunately my mom won’t be able to come with us because we can’t afford it, so it will be just my dad and me. Someone also has to stay back and watch the house, watch the business, and pay the bills. I am going to basically have to get a whole new wardrobe when I am there because hopefully I will gain so much weight from the TPN and everything that I will no longer look like an emaciated skeleton.
The doctor said that not even will he take care of me, but he will take care of my dad as well. The food in the hotel (even though the hotel is part of the hospital) is so expensive. So he said that I can get food delivered from basically anywhere in Cleveland (even if they don’t deliver). I am not sure about the logistics about it, but it should definitely come in handy because my dad has to eat and he always starves when we go places. We skip breakfast and lunch and then order the cheapest on the menu for dinner. By the time we go home… it his pants are so big that the buckle has to be made so much tighter. What a way to lose weight, right? But to be there for that long period of time… he definitely can’t afford to do this usual thing.
So that appears all that is happening. In the meantime my goal is to just be able to get my day-to-day treatment to buy me time until we get down there, as well as raise enough money to get there as well. I am still selling bracelets that say “HELP FALLON” for $5 and they come in pink or blue. I am also selling chocolate lollipops (roses) as well as candy boxes and chocolate boxes (much of what people in high school sell when they do fundraisers). Each candy box has different items such as M&Ms, snickers, Hershey’s, etc. Then I have also the regular chocolate bars. They all go for $1 a piece. Finally, I am also selling the monster candy that you buy when you go to a movie theater such as the over package of M&Ms, Hershey, Chocolate Bars, etc. and they go for $2. If interested in buying or selling… please let me know. You can contact me at Femirsky@gmail.com. Anything that you can do to help me raise funds would be much appreciated.
I really have to get to Cleveland Clinic sooner rather than later because I am getting so much worse. Not only am I getting worse… but also my blood work is all over the place. My White Blood Count is extremely high, my APPT (clotting) is high, lipases high, etc. The doctors are worried that the stuff that is rotting in my colon is actually causing me great problems and leading me down the road to sepsis.
We already know that I have an extremely dilated colon and it has an intussusception. Most people would need immediate emergency surgery, but thankfully (in a weird kind of way) my colon is dilated where I was able to exist with this intussusception. However, it doesn’t appear that I can make it much longer. I am having a harder than ever time going to the bathroom and we are really worried that all the stuff that is rotting and intestines are going to rupture or something… and then we will have real problems. As it is… I am having stuff leaking from my colon from the stuff that is sitting in my colon rotting that is intoxicating all my organs and shutting them down. But now it appears to be getting worse because my white blood count is so high. Even with the “cleaning out” surgeries that I have been undergoing weekly, the white count is rising dramatically. Something desperately needs to be done before it is too late.
I hate to repeat myself, but I just don’t know what to make of all this. I know I am getting worse. I know my blood work is out of whack with potassium in the 2s and elevated sodium levels. I am not too worried about those levels because I have had those levels running for a while. Every so often I will bounce into the low 3 levels for the potassium (and even possibly pull out a 3.4 but that is a rarity). I have an extremely high amylase level (nearing 300) and my prolactin level is extremely high as well (well over 100). In addition, my glucose level is of course low as it is in the 50s. But that is nothing new because that usually runs me between eh 50s and 60s. I also know that I have an intussusception in my colon and when I went for the CT of the colon and the x-ray, the radiologist was extremely concerned about it. The doctors said that ’thank goodness my colon is so dilated and floppy because I have been able to live with the intussusception and other stuff whereas others would need emergency surgery.” When I have went for colonoscopies and stuff, it literally will take a whole room of doctors and nurses pushing and pulling and trying to navigate my intestines because they are so dilated and ‘floppy.’ It literally takes the doctor with all that help over an hour just to even get to the cecum. When I was in California, the couldn’t wait for my colon to come out because everyone wants to know what this thing looks like already with all that is happening with it. Then not to sound nasty or disgusting or anything…but I usually have been having trouble going to the bathroom in general, as it feels like I am hitting a wall and it won’t come out. Yet now I am having even more problems and it feels like glue. I am also leaking mucous all over the place at times, which forces me to have to change my clothes/bedding sometimes like 3-5 times in a single night. I don’t know where this mucous is coming from, but it is not stool. I am also having a problem swallowing even more. I told you about having difficulty swallowing and how everything gets stuck (even doctors have tor remove pills and stuff when doing an endoscopy because they are literally just sitting in my esophagus). Even this problem too is getting significantly worse. It just feels like whatever I take in is like glue coming out. I am just a complete mess.
I am also constantly thirsty. Even though my proteins are supposedly ok, I am so thirsty. I can never quench my thirst and the more I drink… the worse I aspirate and fill up my lungs with water. It is horrible. I even have at least 2 bags of IV a week because I have the ketamine procedure and when I go for the “cleaning out/sigmoidoscopy”. But even with those procedures and getting the extra IV bags, I still can’t quench my thirst. But I don’t know what to do because despite how thirsty I am… the more that I drink… the worse the lungs fill up with water and the worse I aspirate. That is why I tell you that I need the littlest amount of fluids possible and everything (not only does it hurt going in through an IV line, but I have found that I can even feel like my lungs are filling up with water and aspirate based on just getting water through an IV, which to me doesn’t make any sense since it is going through a vein and bypassing the other stuff. But I have found that even IV makes me fill up with water and aspirate worse. I only stop aspirating and I am a bit better when I come to Cleveland because I don’t drink really… so I let myself ‘dry’ out. You know?
I am also hoping that it is going to warm up soon. I can’t take this cold weather anymore. It actually froze my toilet pipes and we couldn’t use the toilet one day. So I used my own contraption of a space heater and a hair blower, as well as the extensions that you put on vacuum cleaners. I put the extensions on the hair blower and tried to warm up the pipes while I had the space heater going below in the downstairs bathroom, which was right below the upstairs bathroom (hot air rises). After 2 ½ hours… success!! When the ice finally broke in the wall, it sounded like rocks coming down the wall. My dad came running to make sure that the pipe didn’t bust. That would have been all we would have needed after all that. Now we don’t take any chances. If the temperature is going to drop that low… we put the space heater in the bathroom and shut the door so hopefully we don’t run into the same problem again.
Well… that appears to be everything. I have ketamine in a few hours. Thank goodness because I am not feeling well at all. I don’t know if it has anything to do with the fact that I went for the procedure to “clean me out” yesterday, but I am really suffering. Even when I was talking to my doctor tonight in Cleveland, he heard a drastic difference between today and yesterday. At least besides the ketamine, I will get getting my weekly dose of vitamins as well. When I go for ketamine weekly… Not only do I have ketamine and a block… But they also have me a vitamin bag as well. So I am getting vitamins once a week through IV because we all know I can’t absorb anything through my digestive system.
I wonder what they are going to do this time. Last time I went for ketamine I was suffering so much from headaches (much like I am doing now) and they ended up sticking needles in my occipital lobes and ran currents and radiofrequency through it. It really did help. But what didn’t make sense was that the sites where they placed the needles didn’t hurt until about 3-4 days afterwards. You would think that they would have hurt prior. So I don’t know why that happened.
In addition, I also underwent a block to try to control the pain. However, they didn’t use the regular steroids that they normally use. Instead, they used ketamine in the block to see if that would change anything. They didn’t tell me until afterwards, so it was kind of a ‘blinded study!” So with everything happening today and especially with everything happening and how I am feeling… I wonder what today is going to bring. I can’t wait to be knocked out with all that is happening
So what else is new? I am trying to keep my spirits up, but to be honest… it is hard. I have been trying to read even though it is getting harder and harder to concentrate. I have been trying to read FIFTY SHADES OF GREY. I know that I am so late with that book, but I figured better later than never. After all, the movie came out… so why not start to read the books. LOL. I think I did the same thing with the HARRY POTTER series. I don’t think I ever read those books even though people made such a big deal over them until the first movie was released. So hopefully this will be a great book and I will be able to finish it because that is a huge problem that I face.
In addition, I decided that I would try to make myself pancakes today. I know that I basically only have one more month of eating because I won’t be able to eat after these surgeries and until I get the transplant. I won’t know exactly when I will be getting the transplant until the surgery either because it all depends on what my small intestines look like when they take the colon out. So… I want to make sure that I try everything and taste everything so that even if I can’t get it down now… I can at least say I ‘tried’ it so I won’t miss it later on. So I decided to have pancakes and I was talked into making my own because I was told how ‘easy’ it was because it came all ‘complete’ and all you had to do was add water. Well… I did that and boy… my pancakes surely didn’t come out looking like pancakes. They came out looking like globs of something. At least they kinda tasted ok, but they definitely didn’t taste like pancakes.
Well… I guess that is about it for right now. I wrote enough and want to rest for a bit before I leave for the hospital for ketamine. Thanks again for all your kind support. Again, if you want to buy or sell candy, lollipops bracelets, etc. please let me know at Femirsky@gmail.com. Anyway of helping me to raise funds will be greatly appreciated.