Just wanted to give you the latest update since things are happening! Plus, I am in so much pain tonight and suffering so much that I can’t sleep (which is no different than any other night). I am weakening so much that I basically spend all my time on the couch. I barely ever get off the couch nowadays as I basically just “lay” the day away… I would say “sleep the day away” but I am in way too much pain to do that!!
I just wanted to let you know that tomorrow… well actually it is today since it is after midnight when I am writing this that I will be undergoing surgery and being hospitalized. I know I spoke briefly about it in the past, but it has been decided to happen today and it is an emergency, so that is why I am writing to let you know all the new upcoming news. Oh… before I begin… I also want you to know that August happens to be Gastroparesis Awareness Month as well, so just wanted to point that out as well. Maybe by bringing awareness to my situation, I can be helped more because more people will know about it. After all, “power” is in numbers and the more people who is knowledgeable about all that is happening and about this illness, the more we can raise awareness and fight it. Even if I can’t necessarily be helped, I hope that I can make an everlasting mark in the world and bring awareness and attention to this illness because no one really knows about this illness. I hope that other people don’t have to suffer the way that I am. Treatment and a cure need to be found and the more people that know about it… the more it can be sought!
Since I am really deteriorating, the doctors feel that they have to move as fast as possible. Therefore, they have decided to proceed with surgery. As I discussed previously, I need to have a pump implanted because of how bad things have gotten. I can no longer swallow medication because it is getting too difficult and I am not absorbing it should be either. I can literally take the pills in the morning and then when I vomit over 12 hours later, I vomit them back up and I can literally bring them back down to my dad in a cup because they are not dissolved whatsoever. Therefore, it is not really doing me any good because they are not really being absorbed and I am not getting the medication like I should be. You know?
In addition, I am deteriorating so much that the medication that I am currently on is no longer holding me. By getting the pump, I will not only have to take it orally anymore as it will continually dispense it, but it is supposed to be so much more powerful. Instead the medication going into the digestive system and into the bloodstream like it does when you swallow pills, the pump puts the medication right into your spine, which really makes it more powerful. So they are hoping that by having the pump, it will not only be beneficial because it will avoid me having to take the medications orally since I am having difficulty swallowing and such, but it will also help me more with the pain and such because it will be so much more potent.
However… the pump is an extremely high-risk operation especially for someone in my situation because I am not in any condition to be operated on. I have no ‘reserves’ either to recover with because I am less than 70 lbs. and I have so many issues going on. Not only do I have the usual risks of having the actual surgery in itself, but I also have the risks of having an external device in me because I am having hardware being implanted in me. Especially since I have autonomic dysfunction, we have no idea how my body is going to react because my body literally rejects everything and anything. My body can literally shut down and go into total organ failure because of this pump because it will ‘reject’ this foreign hardware. With my illness, my body hates when I mess with it and believe me… I am sure that it is going to make me pay the price because I am going to be ‘messing’ with it. You know?
Not only do I have the regular risks of surgery, but I have the additional risks of having a severe infection or complication afterwards because the machine can easily erode through the skin as well. I am extremely thin and as a result, there is no padding really to go over it and cushion the machine. The doctors have a real fear that the skin is going to erode and the machine is going to come through the skin because of how thin I am. They are also really scared because they don’t know honestly how they are going to fit the pump into me because I am so tiny. After all, I don’t weigh a lot and the pump is so big.
Even though I am only getting the pediatric size, it is still considered extremely large especially in consideration to my body. I am way too tiny to have this pump put into me, as I only weigh in the 60 plus pound range. There really is no room for it. The doctors told me that it is going to be extremely visible on me, but it is at the point that I don’t care as long as it helps. It isn’t like I wear a bathing suit anyway. You know?
To help with the implant, the neurosurgeon is going to have a plastic surgeon help him implant the pump into me. He is hoping that with the plastic surgeon’s help that he will better be able to place it and that the plastic surgeon can possibly ‘build’ something so that it can be placed more comfortably. He is hoping also that it will also be beneficial because it will lead to less chance of it becoming eroded because it is a real possibility especially in the condition and state that I am in.
With that being said, the first part of the operation I found out is going to be tomorrow, which is actually today because it is after midnight. I am extremely nervous because I know how dangerous it is. However, this first part needs to be done because the second part, which is much more serious, is supposedly being performed on this coming Tuesday, August 27th.
The first part of the surgery, which is today, is going to be performed at St. Joseph’s hospital. Even though it isn’t as great as hospital as they would have liked for me to be at, it is the only hospital that they could get in such a short amount of time and with everything that is needed. After all, I need to have scheduled immediate surgery, as well as an ICU room, surgery that entails not just having one doctor in the room but many, etc. If it was more simple surgery or I was going to be placed onto a ‘normal’ floor… perhaps things could have been different. However, I need to be put in the ICU because of how dangerous the surgery is and how they are going to have to watch me so carefully afterwards. In addition, this is not a “one show doc” surgery because with all my medical complications, they need to have multiple doctors in the room in case something should happen. Plus, there is a lot going on for this surgery and a lot of components. Each doctor is basically doing his or her own thing. So to accommodate everything and schedule everything in such short notice because there are so many sick people in this world and such, we had really no other choice but to have it scheduled at this hospital. I will be having the second part of the surgery, which is scheduled for Tuesday and so much more risky and more intense, at Winthrop. I am so much happier for that because I know how much better Winthrop is as a hospital, so at least I feel better knowing that I will be there for the more riskier and dangerous operation even though I know this one will not be such a walk in the park.
Even though I will be at this current hospital that I really don’t want to be at this time and would rather be at Winthrop, the doctors assured me that I will be OK at this hospital and they will make sure that everything will go according to plan. They said that especially since I will be in the ICU that I will have nothing to worry about because I am basically on 1 to 1 service and the nurses are very good. I am really hoping that this is the case because my life is in their hands. My dad will also be staying with me the entire time, so that is good. At least that makes me feel a little better.
It is going to be one huge day tomorrow. During the first part of the surgery, they have to make sure that I am going to be able to tolerate the pump in the sense that I will be able to handle all the medications that the pump will delivered because it will be so much more powerful since it will be delivered right into the spine. It is considered a law to have this ‘trial’ beforehand because you can’t have any real side effects if you are to have the pump implanted. At the very least, you are to have to be able to handle Morphine even though they are going to be putting in lots of other medications into the pump. We are hoping to put in snail venom called Ziconitide, which has been proven to helpful, but unfortunately it can only be given through a pump. So… we will go for the trial tomorrow but since it will be very risky and traumatic (and my disease spreads like a wildflower whenever there is anything traumatic), the doctors have to take the appropriate precautions so that the disease will not spread. As a result, they are going to be giving me ketamine during the surgery and putting me into a ketamine coma in hopes that the disease will not progress. Ketamine is a special drug because it is a NMDA receptor and it is supposed to stop the disease from spreading and can even reverse the disease in a high enough dose (of course that dose though that would really reverse my disease is way too high and only attainable out of the country, which is extremely expensive).
I will also be in lots of pain because I am not only in such severe pain all the time and never get a moment break from it, but this surgery is definitely going to exacerbate the pain I am already in and will escalate it. Therefore, they want to keep me as comfortable as possible and hopefully in order to keep it from spreading they will not only give me ketamine during the operation, but they are going to continue with it after the operation. Therefore, they are going to keep me sedated in a coma with ketamine and other ‘good’ stuff for the entire time I am going to be there in the ICU. After all, I can’t even tolerate an IV because it burns up my veins and especially with this trial, I will have to have IV access all the time I am there because it is very dangerous and it can easily cause my body to go into cardiac arrest and give out at any moment. After all, my body is weak enough on its own… having all this done on top of it will only complicate things more and cause my body to give out more.
I am extremely nervous and scared, but at least I know that my dad will be with me throughout this entire surgery. Upon leaving the hospital, they are going to be sending me straight to hyperbaric oxygen in hopes that not only will it help me ‘heal’ from this surgery and prepare me for the next, but they are hoping that it will help my overall disease as well. It is considered ‘experimental’ so all bets are off what is going to happen, but there has been some real promise in that area. So I am really hoping that it will benefit me as well. I will be put down into dive that is close to 3 atmospheres and given 100% oxygen.
Hyperbaric Oxygen Therapy (HBOT) benefits your body by helping to increase your body’s ability to absorb oxygen. Oxygen is vital for health; it is the single most important element your body needs. Oxygen is our primary source of energy. Not only does oxygen fuel the body, it supports the immune system by destroying toxic substances. Anaerobic bacteria, fungi and viruses all have a common intolerance for oxygen; they cannot survive in an oxygen-rich environment. Therefore, they are not only hoping that it will help my overall disease, but they are also hoping that if I did pick up any infection or any bug whatsoever from the hospital (we all know how that is the biggest place to catch something and how many things loom there), I will be able to fight it because the smallest infection is something major to me. In addition, the body’s vital functions are enhanced by increased availability of oxygen. Increased pressure also stimulates blood flow and decreases inflammation, and has a calming effect. Sleep is enhanced, absorption of nutrients and digestion are improved. At the cellular level, oxygen is required for proper function.
At the very least, my tissues are being deprived from oxygen and as a result, I always end up changing colors. In fact, doctors are scared that it is even going to end up resulting in amputation. They are hoping that the hyperbaric will not only promote the wound healing that I need from the surgery, but it will help bring back some dying tissue and nerves. After all, I also have the severe gastroparesis, which is where my entire GI (stomach, small and large intestines, esophagus, etc.) don’t work. They are hoping that even though they are extremely paralyzed and most parts are dying… they are hoping that the hyperbaric can stop it and perhaps rejuvenate the nerves and cells. In short, the hyperbaric oxygen therapy is known to stimulate progenitor cells, effecting repair and regeneration of both hard and soft tissues. Infections in deep tissues and bone benefit from hyperbaric oxygen therapy through direct antibiotic action, or synergistically with other standard treatments. Inflammatory factors are suppressed with oxygen treatments aiding in the healing processes.
So all that is going on for the next few days. In the meantime, I had to go yesterday for medical clearance from the pulmonary doc to have the hyperbaric oxygen chamber and to have clearance for surgery as well. When I met with the pulmonary doctor, I was told that she was shocked that I was still alive and going the way that I am. Doctors are fascinated how I am defying medicine because in the state that I am in and the numbers that I am bringing in, I really shouldn’t be alive. I am like 60 plus pounds and have an extremely low BMI that is basically unheard of. Yet… I am continuing to push onward because I am not ready to give up yet. Doctors are so amazed in how that I am still going and they even say that I must be doing something ‘right’ even though we don’t know what that is. I am just the “energizer bunny!” I keep going and going and going.
In the meantime, the pulmonary doctor did end up switching my medication though for my breathing because I have been having a lot of breathing issues. They switched me from my Spiriva to a new medication called Tudorza. So hopefully it will help better. The doctor also said that she noticed how ‘noisy’ I am when she listened to me. I have been aspirating quite a lot and it is so very dangerous. It really worries her because aspirating can cause a whole host of problems. Not only does it cause difficulty breathing, but also it can lead to severe pneumonia.
The doctor thinks that I am aspirating because of the paralysis of my entire GI system and the extreme Gastroparesis. Since the gastroparesis has gotten so bad, of course the aspirating has worsened as well. There usually is a piece of tissue called the epiglottis that normally prevents food from entering your lungs by covering your trachea, or windpipe, as you’re swallowing. However, due to my gastroparesis, it doesn’t really function the way it should and as a result, the food and liquids keep spilling into my trachea. Inhaling food, known as aspiration, can cause serious complications, especially if you have a condition that makes you aspirate food or fluids on a regular basis. Like I said before, the doctors are extremely worried because food or fluids in air passages may trigger an inflammatory response as the lungs react to the foreign substance. Fluid may accumulate in the lungs if a passage is blocked. If an infection occurs, I can easily develop bacterial pneumonia.
The problem is also that I am extremely thirsty because my digestive system doesn’t work, I can’t absorb anything, and I end up vomiting all the time. Therefore, I am always trying to drink and nothing quenches my thirst no matter how hard I try. It is a no win situation because the more that I drink, the more I aspirate. Therefore, by the end of the day the aspirations are so much worse because of all the extra fluid I tried to consume in order to quench my thirst. It really is a nightmare to endure on top of everything else. My pulmonary doctor told me that something really is in need to be done because of all the aspirations that is occurring. Ideally, she said that I shouldn’t be taking anything by mouth and should be on tubes. That is what they were trying to do in the past at Stanford and such, but they couldn’t find a viable portion as of yet in my GI system (in my intestines) to have the tubes put in. That is another reason why I need to have a multivisceral transplant ASAP.
The pulmonary doctor wants me to take care of the GI problems as soon as possible because they are continuing to worsen and they are really causing so many other problems within my body. They are really causing my other organs to fail among other things. Therefore, she has referred me to a team of GI at Yale and I am waiting to hear from them. When I spoke to them, the head doctor had no appointments until December at the earliest, but she said that she would ‘fit’ me in because she saw how URGENT I needed to be seen because it is basically life or death.
In the meantime, I am also waiting to hear from Georgetown in Washington DC, as that is where I am hopefully going for the multivisceral transplant, which incorporates getting a new stomach, small and large intestine, pancreas, and liver. It is an extremely radical procedure and not many hospitals do it. But it is basically my only chance. So they are working on getting everything organized to see me. Never a dull moment.
I just got a phone call though from FEDEX to let me know that there is a package from Georgetown Transplant that is coming Express. It was supposed to be delivered today, but they had the wrong address for some reason and therefore, they are not delivering it tomorrow. I am really wondering what it can be because it was marked URGENT and IMPORTANT.
Tomorrow (well actually later today because it is after midnight) is definitely going to be one BIG day. I have to go for pre-surgical testing at the hospital in the morning before the surgery. Since my dad has been taking a lot of time off from work and we really can’t afford for him to miss so much work, I was really fortunate to have a friend offer to take me to the hospital in the morning to have the pre-surgical testing work up. I really wasn’t expecting it, but I am so grateful that he offered. It really made a HUGE difference because my dad is now able to at least work in the morning before we leave for the hospital, so he is able to get some of his work out and make ‘some’ money.
So my friend will be taking me to Winthrop in the morning for the pre-surgical testing and then my dad and him will switch for the actual surgery. I am really nervous about the actual surgery, but I guess I have to take one thing at a time. I can’t believe that my surgery is at noon though and the hospital wanted me to stop eating and drinking by 8 O’clock the night before, which is over 12 hours away from surgery. I don’t know how on earth I am going to last without dying of thirst. After all, I am always soooo thirsty.
I did realize one thing that is the truth. I found a quote that describes my life perfectly. It said, “You know you’re chronically ill when the trash goes out more than you do!” That is definitely the case with me because I never go out anymore. I would love to have my life back. This disease has robbed so much from me and it is soooo unfair. I can’t wait to have my life back. You just learn never to take anything for granted because in a heartbeat… it can be taken away. I have also learned that health is wealth and when you have your health… you have everything!! People don’t realize it, but as long as you have you have your health… you have everything!! One day I will be able to have my life back. One day I will be out of pain. One day I will be able to have that husband and family that I desire. One day I will be able to be that doctor that I so want to be. But what kills me is that all this is contingent on treatment and without the help of others, I won’t be able to receive the needed treatment that is necessary because it is far too expensive for my family to pay for it alone anymore. I desperately need to help from others. I only hope one day that I will be able to get my life back because I have such a long bucket list to still do!
Well… talk to you again!!