Just writing to give my usual update as to what is happening. However, I am not just writing to update you because I haven’t written all week, but I did receive some bad news today and I wanted to make sure that I did write today in case something did in fact happen. I always want to make sure that I keep you as in the loop as possible so I am going to try to include everything that is going on. There has been a lot occurring this past week and I haven’t been well. So please bare with me. If this update isn’t as coherent as the others, I am sorry.
Well, I just wanted to first say Happy New Year or “L’shanah tovah tikatev v’taihatem” to everyone. Hopefully this is the start of a great New Year. But, I must say that everything is touch and go right now. Currently, I am supposed to be in the hospital because my bloods have literally crashed and are so very low. In fact, they aren’t even just listed as “low” on the results sheet, but they are listed as “critical!” The doctor has stated how he wants me to go to the hospital tonight because of how bad my blood values are, but I am still at home hoping that perhaps my blood will improve on its own or something because I am literally petrified to go to the hospital.
I can’t believe how bad my bloods really are. I have not been feeling well at all. I went for bloods today and then for hyperbaric oxygen afterwards. I knew something was going on because I was weaker than usual, suffering from the chills, etc. I just literally felt like I was going to collapse. When I finished with hyperbaric oxygen, I saw that the doctor already called me back with my blood results. It was only a very few hours that had passed and they never come back that soon unless something was really wrong. So when I saw that the doctor had called, I knew that something was really wrong.
Sure enough when I called the doctor back immediately after I came out of the hyperbaric oxygen chamber, I learned how bad my bloods have dropped. I learned that my bloods were not just considered “low” but they were considered “critical” and that I really needed to be in the hospital. The values were so low that the lab even tested the blood and then retested it again to make sure that the values were correct. Due to my bloods being so very low, I was extremely at risk of having an arrhythmia and cardiac arrest.
Yet, I really don’t know if going to the hospital is the best option as of right now. I know that people might be saying that I really should be going because they will be able to “help” me in the hospital. But in my case… the hospital isn’t always the best place for me. I have no immune system and going to the hospital puts me at risk for so many additional problems because there are so many infections and illnesses that are possible to get when you go to a hospital. In addition, I am literally petrified to go to the hospital because I don’t want to be in the hospital alone. You would think that I would be used to the hospital by now especially with all the times I have been there already. However, I have become more fearful of the hospital more than ever. I am afraid of something happening to me there because if I am to die, I want to be with my family and at home. I know playing with fire and Russian roulette by staying home and out of the hospital, but I feel like I lasted this long already and made it through ‘bad’ things… I can make it through this too. I really don’t want to end up in the hospital.
So I am hoping that it won’t have to come down to that. I am very weak currently and not feeling well. They increased my meds and even though the hospital might be a better choice in some ways, in other ways it is not because it can also spread my disease easily and I can easily catch another infection or something. So, I am just hanging out and doing a “wait and see.” Hopefully things will improve. But if they don’t or I worsen, I guess I will have no other choice but to proceed to the hospital.
The doctors are thinking that something is definitely occurring in my GI system like a bleed or something. My bloods are also coming back with the clotting factor being too high, which means that I am having difficulty clotting. However, with all the GI problems that I have currently been having and all the symptoms that I have been having and how they are worsening, they think that this is all related together. We know there is a twist/obstruction in the colon and it needs surgery. However, we aren’t sure which it is and they want to do a CT scan to further determine if it is a twist or obstruction. Once determined, I will need immediate surgery. We have been delaying this scan though because like I said, once we get this scan I will need immediate surgery and unfortunately, I don’t have the funds right now to get it because I can’t get it done in the local area. I need to go to a hospital that will be able to handle my complex condition such as Hopkins, Mayo Clinic, Stanford, or even Georgetown. I am also hoping that it will somehow get better on its own because I know it will most likely result in getting a colostomy.
I recently have been to the neurosurgeon and he wants to put the pump into me. I have had the trial for the pump about a week ago, and I had some complications. I ended up having cerebral spinal fluid leaking out of my spine and as a result, I needed to have a blood patch done and have some ketamine comas/infusions in order to try to calm and reboot my body. I was originally supposed to have the permanent pump implanted last week, but due to all the complications that have occurred, the surgery had to be cancelled. So, we are in the process of rescheduling it. Hopefully it will be soon because I need the pump so very badly.
I need the pump more than ever now because of how much I am suffering and deteriorating. My meds are not holding me at all anymore and they are getting incredibly difficult to swallow because of my illness. My neurological disease and autonomic dysfunction is really messing around with my swallowing on top of everything else and therefore, it makes it extremely impossible to take all the pills that I take (over 50 daily). By getting the pump, it will deliver some of my meds automatically into the epidural space of my spine and it will eliminate the need to swallow the medication. In addition, it will also cause the medication to be more potent, which is something that I can definitely use because I am literally climbing the walls in pain now. Nothing seems to be helping now so that will be amazing if it gives me some relief. My GI tract is completely paralyzed and therefore, I really can’t absorb my medicine. By getting the pump, I won’t have to worry about having to first absorb the medication and having it pass through my digestive system and into my bloodstream and so on. Instead, it will be directly deposited into the epidural space and go right into the place it needs to go. I will also be able to be given additional medication to help my illness that you can’t get in ‘pill’ form.
So… there is a lot of promise with the pump even though it is going to be an extremely difficult and risky procedure. The pump is quite large compared to my body size and therefore I am going to have a plastic surgeon operating on me as well in order to help place the pump in me. The plastic surgeon is going to try to help build a space and help close me up because the last thing they want would be for my skin to erode and the pump to come ‘through’ the skin. They are really concerned with the complications I am going to receive after the implantation as well because I don’t have the padding that is necessary to cushion the implant. I can easily have the skin eroded and have an infection set in.
In addition, the surgeon is extremely worried about the overall surgery because he said that it is an extremely risky and dangerous surgery for me. Due to my medical condition and the overall state that I am in, he said that anything that I do is basically “life and death.” He told my dad and me this week that he is “so scared for my life” and how scared he is that “I am going to die.” He said that he is so afraid that someone is going to “sneeze” or something and I am going to “die” because of how medically compromised I am and how much I am in bad shape and malnourished. This is just another reason why I don’t want to go to the hospital now that my bloods are bad because I don’t want to risk getting worse because of something else occurring. He said, “even though I really need this pump, I need to be prepared that I can very easily die during this procedure.” Like he said to us, “I am leading a slow death and any intervention or surgery can really kill me immediately.”
I really need to go for Hyperbaric Oxygen Treatment, but unfortunately it is extremely expensive and the insurance isn’t covering it whatsoever. I really can’t afford to pay for it and therefore, I won’t be able to receive it without the help of others. Even though I have only had a few treatments, I have already seen a difference with the treatments. I actually look forward to the Hyperbaric Oxygen Treatment because if nothing else, it really helps with my stomach and circulation. I have been really feeling lots of pains in my stomach and I have been more distended and bloated than ever lately. In addition, I am extremely constipated too. I walk around like I am 9 months pregnant and ready to give birth. I really need someone to pop me. The hyperbaric Oxygen Chamber is the only thing that gives me some relief in that area because it helps in the bloating and distension to some extent. It makes it a little more bearable and when you are suffering in the amount of pain that I am, you will take it. After all, the more pain and suffering that I am in and the more bloated/distended that I am… the worse my disease flares up and the worse the autonomic dysfunction is exacerbated. So this little difference in making my stomach feel better actually makes a HUGE difference overall.
In addition, my tissues in my limbs are becoming necrotic, as they are all discolored because of my illness. Even when I elevate the limbs, they are still remaining discolored, which means that they are getting really bad. The doctors are extremely scared that I am going to lose my leg or something. In fact, the doctors said that even if I get better, I may still end up losing my leg because of how much time has elapsed and how long the tissues have been deprived of oxygen. At least when I am in the Chamber, I am getting oxygen to the necrotic tissue. In fact, all the discolored tissue actually resumes normal coloration. It is simply amazing.
So I am really hoping that I will be able to continue the hyperbaric oxygen treatment. There are very few things that I can say actually “help” or make a difference and this is one thing that I can say definitely does help. Unfortunately though, the doctors say I will need at least 40 treatments and of course if I don’t get any help from others, I won’t be able to undergo those treatments because I definitely can’t afford them on my own. So I am hoping that the video that was made and my website will bring in some much needed donations so I can receive the lifesaving treatment that I need. After all, this treatment alone will cost me about $1000 a week alone on top of everything else.
On top of everything else, I am really suffering because of the weather. I really hate this time of year because it is the “in between” weather. I am like a “human weather station” because I can feel the slightest change in weather, temperature, humidity, etc. I hate this time of year because I need like a perfect 75-degree temperature in the house. However, with the weather that is outside now, it is the type of weather that you don’t really need air-conditioning and can open the windows. However, with my illness, I can’t tolerate having the windows open. I can’t tolerate the breeze the comes through the window because it is extremely painful. It literally feels like I am going through a pane of glass when the breeze comes through the window. In addition, when the windows are open, there is no real way to regulate the temperature. At least when the A/C is on or the heat it will go on and off depending on the temperature. I feel so bad for my parents because they would love to have the windows open. I would too because it would be great to get some fresh air into the house. However, it is literally impossible because I really can’t tolerate it. I feel so bad because it is kind of money that is being spent unnecessarily on air-conditioning, as we can easily open the windows because it is so cool outside. However, like I said before… I can’t take the breeze coming through the window, the fluctuation of temperature because it will go so very low if it is too cold outside or too high if it is too hot outside, and the ‘quality’ of the air because it feels ‘unclean’ and ‘thick!’ When the windows are open, my autonomic dysfunction really flares up. I become really dry and swollen. It also makes it extremely difficult to breathe.
We are also leaving Monday, September 16th for Georgetown in Washington DC. It is only going to be a brief trip, but we have to go to the hospital and meet with the transplant team. After all, I need to have a multivisceral transplant, which incorporates getting a new stomach, small and large intestine, pancreas, and spleen. There are only like 6 hospitals in the country doing this rare and radical surgery with Georgetown being one of them. Hopefully the appointment will go well and it won’t be much longer until I receive the transplant. After all, I really don’t have “time” on my side because this transplant is the riskiest and most dangerous transplant to have of all transplants. The survival rate of the transplant isn’t that great either as it only has about an 80% survival rate after the first year and 50% after 5 years. The 12-hour surgery is often the only option for those suffering from severe abdominal conditions. I really need to be strong for this transplant so I can make it through it and the more time that passes, the weaker I am getting. The doctors already are hesitant about me making it through it. We don’t have time to waste.
This trip will definitely be an experience. Even though it is only going to be brief, I am really excited. This will be the first time my dad will be in Washington DC even though I have been there before. I find Washington DC to be very amazing. There is so much I want to see and do there because I haven’t been there in years and there has been so many changes since the last time I have been there including even a new monument built that is supposed to be simply amazing.
However, we really won’t have time to really ‘sightsee’ because the trip is going to be brief and the main purpose is just to go to the hospital. Plus, I am really too sick and weak to really travel all over the city to all the monuments because even though they are all located in the same general area, it is still a lot of walking involved. I am really excited though that the hotel that we are staying at is located 2 blocks from the White House and on Pennsylvania Avenue, so at least we will be able to see that. We figured that since the city is so difficult to drive because of all the traffic and such, it would be much easier just to jump on the metro and take that straight to the hospital.
But I am really super excited because it appears that I am going to be going to the White House and getting a personal tour from a friend that I grew up with. I am so super excited because I always wanted to go inside the White House. My friend that I went to school with happens to work in the White House and she has been generous enough to offer us a private tour of the West Wing, as well as to show us where she works as well. Not only will it be great seeing her because I haven’t seen her in years, but I can’t believe I am going to be able to get a tour of the West Wing. The West Wing, also known as the Executive Office Building, houses the offices of the President of the United States. It also contains the Oval Office, the Cabinet Room, the Situation Room, and the Roosevelt Room.
I really can’t believe that I am going inside the White House. My friend said that I have to be cleared with Secret Service and I think that is the coolest thing. I am definitely going to treasure this moment for the rest of my life. I only hope that they let me take pictures. I joked around with my dad and said to him that “maybe they will let him sit in the President’s chair in the oval office.” My dad said that they probably don’t let anyone sit in it. But I told him at least maybe we can ‘touch’ it and he can feel the ‘power’ in his hands. I really am hoping I get pictures of everything.
Well… I guess that appears to be everything. I really want to thank everyone for spreading the link of my video. I really can’t tell you how much I appreciate it. I really need attention and awareness made to my illness and website because I need as much people knowing about me as possible. I need such expensive life saving medical treatment and without the help of others… there is no way that we are going to be able to afford it. So please continue to spread the word of my website and please continue all your prayers. I really need them.
Finally, my dad’s birthday is on Monday. He is turning the big 60. I really want to make that day super special for him because he is not only my dad, but he is my best friend and hero. If it weren’t for him, I definitely wouldn’t be here today. I really don’t know where I would be or who I would be if it weren’t for him. I love him to death and I only wish that there were something that I could do to make his life better and to give him the happiest of all birthdays. No one deserves a better birthday than my dad because he has done so much for me and no one could have done more than him. He works his butt off so that he can provide as much as he can for my family by getting up at 3 AM and out the door by 4 AM and not getting home until 7PM from work (and his work is all physical and not even just sitting behind a desk), by taking me to all my appointments, by being there to hold my hand, by being my rock and strength behind me. He really is something else. He is really my superhero! They don’t make anyone better than my dad!!
Speaking of birthdays, my dog’s birthday was the other day. I love my pup. He just turned 8 years old. He is like my best friend. He spends all day with me and he is just the smartest dog in the world. All he has to do is watch you do something once (like open his treat jar, open the gate, etc.), and he will know how to do it! He can figure out anything and everything. He even knows how to knock on the back door when he wants to go out and come back inside. He is totally housetrained and never makes on the floor. Even when he doesn’t go out for over 12 hours, he will not have an accident. He is simply amazing and so clever. When he wants something… watch out because he will always find a way to get it. I bought him for myself, but he really became a “dad’s” dog. I don’t know where I would be without any of my animals though including my cat, dog, and of course turtle.
Well… Gonna get going. I will keep in touch!