I know it has been awhile since I have written, so I decided to write a little update as to what is happening especially since so much has happened in the past couple of days and to let you know as well that we are scheduled to leave for Los Angeles shortly. We are scheduled to leave for California next week, but of course it still isn’t definite yet because we are still short on funds. I really need to get to California because I have really been deteriorating and unfortunately there is no other place around here to receive treatment.
On Father’s Day, which is June 15th, my dad and I are supposed to be headed again back to Los Angeles, California. We are going to be going back to California because I need to have tests and exploratory surgery. I am not doing very well. In fact, I am really going downhill rapidly. As I told you before, they decided that I needed to have my colon removed because it is “dead” and they also are pretty certain that I need esophageal surgery as well because my esophagus isn’t working either. Therefore, they want me to come to California for all the presurgical testing as well as other diagnostic testing to further determine exactly what needs to be done. They know they have a huge crisis on their hands, but they are trying to localize and minimize everything as much as possible because they know how fragile I am and how any surgery I have is really dangerous. They also know that I really don’t want a “bag” and therefore, they are trying to work around not having to give that to me.
So what better way to spend Father’s Day than to spend the entire day traveling with my dad across the country. I just hope that we get to go because I am really deteriorating a lot and fast. My heart has really been giving me problems, as my heart has been feeling quite ‘weird’ lately. I have also been suffering from severe chest pains lately that penetrate throughout my body even down my arms and up my neck. With my bloods being as horrendous as they are… we already knew that my heart was being affected and all that has been going on was taking a toll on it. My heart rate has been so very low lately that when I go for my usual surgery on Friday, the emergency alarm on the machines won’t stop going off.
We know things are not right because lots of things have changed especially in the last week or so. We think that my illness is really taking a huge toll on my heart now and causing it to fail. We think that I am having heart failure. Heart failure does not mean the heart has stopped working. Rather, it means that the heart’s pumping power is weaker than normal. With heart failure, blood moves through the heart and body at a slower rate, and pressure in the heart increases. As a result, the heart cannot pump enough oxygen and nutrients to meet the body’s needs.
With all that has been happening, I have been getting severe edema in my legs and feet. Even if I elevate them, which you are told to do so in order to alleviate the fluid, the edema is not dissipating. Edema is a swelling due to the accumulation of excessive fluid in the tissues. In addition, I am getting really dizzy, weak, and fatigued. I have also been complaining about my heart beating “weird” and racing.
Even breathing and talking is getting harder. I keep aspirating and therefore, I keep feeling like I am drowning in my own fluids. You can literally hear my gurgling when I breathe. When the doctors examine me, they are like “sounds very noisy inside!”
I have also never changed my sheets as much as I have done so lately. I keep vomiting up blood at night when I ‘cat nap.’ It is really scaring me because it definitely isn’t normal to be vomiting up blood.
With everything that is occurring, I really need help and help fast. I really am hoping that we can move from HOPE to ACTION in going to Mexico. Ideally I need to get to Mexico, which is the place that will be able to hopefully put this whole entire illness into remission and ‘cure’ me, but unfortunately we are so short of funds because it will cost about $100,000. So, we really need to look to other options to ‘buy’ time. So that is the reason we are heading to California. We don’t even have the money for that trip to California either, but at least it is less than Mexico and we really need to do something in order to try to ‘buy’ me time to live. Without going to California and having these surgeries and tests and such, I am not going to make it much longer and I won’t even have to worry about going to Mexico.
So we are heading to California for at least a week starting Father’s Day. If you can please spread the word that help is needed and please say a prayer, it would be greatly appreciated. Even the littlest amount will help! We are thankful for anything that anyone can do for us because I am a ticking time bomb and I am detonating.
In the meantime, things have not been going well. I just had surgery today because it was Friday. Since my colon isn’t working, I have been going to the hospital every Friday to have surgery because I need to be “vacuumed/suctioned” out. I joke around and say that I am getting “housekeeping” done. It is really necessary to do this because my colon is so dilated and everything that I take in and I don’t vomit back up just sits in there. Therefore, I have not only wastes but also medications and other stuff just sitting there and rotting. That is why it smells so putrid when it comes out. I don’t even have any formed stool anymore. It is all just viscous liquid and mucous. Since the colon isn’t moving things along, the doctors are afraid that the intestines will perforate or rupture and we will have huge problems. I can easily go into sepsis because of this, which will easily kill me. In addition, the colon is so dilated and putting so much pressure on my organs that it is shutting them down as well. So when I go for the “suctioning/vacuuming,” the doctor tries to remove whatever he can.
I am in so much pain in my belly. I can’t go to the bathroom and I keep filling up with air. The only thing that comes out of me is mucous. I am on so many potent laxatives and yet, I still can’t get things out. I already take 6 Senokots, 6 Colasces, 8 Ducolax, 600 mg of magnesium, and injections daily. The doctors have tried everything that they could such as enemas, but nothing works. The only option that we have is this surgery that I have to get every Friday.
So today was another surgery. Everyone knows us at the hospital by now so they kind of know how to treat me and what my numbers are. After all, I am not like a ‘regular’ patient and therefore I can’t be treated like a typical patient. The nurses are so very nice there and my doctor is really amazing. They try to make it as easy as possible for me, as they know how much pain that I am in.
When I go for the surgery, I am fortunate that they allow my dad to come with us into the OR. They let him stay there with me until I fall asleep from the anesthesia. You can’t imagine how much better I feel knowing that my dad is there when I close my eyes and go under. There is always music playing in the OR so my dad always teases the doctor about what is playing. My dad said that there better not be “Knocking On Heaven’s Door” when a patient is wheeled in. My doctor always asks me if there is something special I want to listen to. Of course I always tell him that I don’t care.
I am really nervous that something really bad is going on inside me because not only did the doctor tell us that it was so horrendous inside and it was one of the worst times he has seen me, but I am now bleeding every time I go to the bathroom. I keep saying it is just a reaction to the procedure and because it was so bad inside, but truth of the matter is that I am scared.
In addition, I also went for a ketamine coma/infusion this past Wednesday. I only wish I could stay under ketamine forever because that is the only time I am not in pain. The doctor increased the ketamine dosage, but of course once the infusion is complete and about an hour or so after I open my eyes… I am back to square one! That is why I need to really get to Mexico. I need to get to Mexico so that I can get the amount of Ketamine that I really desperately need since that amount is not legal in the United States. In Mexico, they basically give you so much ketamine that it shuts down your entire body and that is why you are kept alive on machines during that time.
My doctor also gave me a new medication to take to try to help me in addition to raising another. However, I ended up having such a reaction to it that I won’t be taking that medication again. Since I have been deteriorating so much and in so much pain, the doctor gave me Klonopin, which is on the same lines as Valium. He thought that it would take the edge off the pain. However, he ended up giving me the highest dose it came in and therefore, it really put me “out.” After I took the medication, I couldn’t even walk. My legs buckled. I also passed out from the medication and have no recollection of anything that happened the following day.
That is another reason why I need to get to Mexico. Besides going to Mexico so that I can be “cured” of my illness, I need to go because that is the only place that can detox me as well. I don’t want to be on these medications anymore. I take over 50 pills daily, and they are really powerful medications too. I take everything from morphine to ketamine to Dilaudid to Nucynta to methadone to more. I am on so much medication that it can easily kill a horse. Doctors are amazed how someone as little as me can take that much meds because they say that a 300-pound man wouldn’t even be able to handle the amount of meds that I take. I know that there are detox programs here, but they will not work for me. I need to literally be put into a coma to have the drugs taken out of my body because the withdrawal is too severe. They even tried to go down on morphine just 30 mg and I was feeling the worst withdrawal effects. It really triggered off the autonomic dysfunction. So… if I have any hopes of getting off the medications, it really has to be done safely and it has to be done in Mexico. So that is just another HUGE reason why I need to get to Mexico.
I really need help and I really need to get to Mexico. I am suffering so much and the pain is so unbearable. I can’t take this life anymore. I cry all the time because the pain is unimaginable. No one can ever imagine how bad this pain is. I don’t wish it on my worst enemy. I literally cry every nite to my dad and tell him to just to take me to Mexico already even though we can’t afford it. Even though we were told that the hospital won’t release me until I pay the bill and in the meantime they will continue to charge us until we do, I keep telling my dad to “forget about the money issue and lets go. Let them just keep me there. Who cares! Just get me help!!” I honestly don’t know how much longer I can hang on.
I just bought these new pillows for my body. I have been in so much pain and nothing I do is making me feel comfortable. Even to elevate my legs… I can’t find a comfortable way of doing so. So I finally found these pillows from BROOKSTONES that are called FOM pillows. They are so comfy. I am thinking of even bringing them with me to the hospital and even on the plane. They are small enough to do so anyway.
In the meantime though, I have been doing some reading. I am reading “The Cuckoo’s Calling,” which is written by JK Rowling. It is pretty good. I was such a HARRY POTTER fan, so I decided to read her other books as well even though she wrote it under another name. The second book to this book is coming out very shortly (like in a week or so).
I am really excited because my mom and I are supposed to be doing this thing called “Paint Nite” together. I can’t really go out at night because of my meds and such, but we found one that was given in the very early afternoon. It’s at a local bistro, but even though I can’t eat or drink anything, at least I will get to paint and spend the time with my mom. You get to paint a beautiful picture that the artist guides you through and they bring all the supplies. I am definitely not a painter and barely can draw even a straight line without a ruler… so it will definitely be interesting how it will come out. But the however it comes out… at least I will finally be able to do something special with my mom.
I really think that the Rangers might win the Stanley Cup this year. Weird things have been happening this year with the weather and everything. The Rangers haven’t won in 20 years, so they are due. Plus, they are having the TRIPLE CROWN tomorrow and it could very well happen that California Chrome will become the 12th horse to win the Triple Crown. I really think that if there is a TRIPLE CROWN winner, then the Rangers are definitely going to win. So we will have to see. I wonder how it is going to be going to Los Angeles with the Blackhawks being the ones that the Rangers are playing because after all, the hotel I am staying at is 19 minutes away from the STAPLES Center and it is one of the biggest events!
I really just hope that I get to California! So if you can please spread the word that donations are very much needed and very much welcomed, I would appreciate it. Every dollar is making a difference. Thanks again for all your prayers, encouragement, and support. If you have any ideas for a fundraiser, please contact me too!