December 13, 2014 HI! Sorry I haven’t written in quite some time, but I have not been feeling well. To be quite honest, I am really not doing well and really deteriorating. As time is proceeding, I am getting weaker by the day and it is getting even harder to make it through a day or night. It takes me quite a while now to build up the energy to do something so even simple tasks like writing my blog is getting too difficult to do and that is why I haven’t really written as frequently as I once did. I desperately need treatment and need it NOW, but unfortunately we can’t afford it and we are in extreme need of the help of others so that I can get the lifesaving treatment that I need. I figured that since I haven’t written in a while, I would write and update you on all that has been happening especially since the year is coming to a close and I am only hoping that 2015 will be better. Plus, I am in need of so much help that I am hoping that through this blog, you might realize how much help I really do require to stay alive and therefore, perhaps maybe you might be able to help in someway… whether it is by donating, spreading the word of my website so that others can know about it and be able to donate, say a prayer, give some fundraising ideas, etc. I am really hoping that something can be done because without any help, I am not going to make it much longer. As it is, we had to cancel the lifesaving surgery that I was scheduled to receive this upcoming week at the Cleveland Clinic. Due to insufficient funds, we had to cancel and it was something that we really couldn’t afford to do because I am literally hanging on by a “thread” and that thread is snapping already. We did reschedule it to a later date, but even the doctors are skeptical about how much longer I can hang on and if I can honestly make it to even another month for when the surgeries are now scheduled. In my state right now… even day counts and makes a difference. I desperately needed to get to Cleveland Clinic this week because I was supposed to have heart surgery as well as have my colon removed. I was supposed to have heart surgery not only to remove the calcium calcifications in my coronary artery, but also to put lines and catheters into my heart to serve as a port, emergency access, a place I can receive TPN, etc. This heart surgery was very important because I desperately needed the lines placed in me. Not only did I need it for the massive surgery to remove the colon, which would follow because it would be an “emergency access” port into me since it was a central line and go straight to my heart, but it would also have other purposes as well. With this port, I would be able to give given medication and would be a huge relief because of the amount of medications that I need to take and because I can’t absorb the medications as they need to be either since my either GI system is basically dead and doesn’t function. If given meds through this access, they would be far more potent and would hopefully help me better both in pain and in general. In addition, as I take so many pills daily that according to docs would “kill a horse” and a 300-pound man would never be able to take because it would even kill them, and it is extremely difficult for me to get them down. I have to take literally over 50 pills daily and with this port I would not have to worry about swallowing any of them anymore. Even the injections that I need to keep poking myself for wouldn’t have to happen anymore, as this port would prevent me from receiving injections and being constantly stuck with needles to give me both medication and draw my blood and everything. Finally, one of the major reasons I need this port is for TPN. As I only weigh in the 60s, I have no ‘reserves’ to help me fight anything should I get sick and for when I undergo surgery. I definitely would need this to help me ‘heal’ especially from major surgeries that I will be undergoing. So everything is just at a standstill right now because we have no funds to send me. Not only do I need help even paying for my medical treatments at home, and medications and everything, but there is absolutely no way we could pull off this trip. I would need to spend at about 6-7 weeks in Cleveland, which would amount to a lot of money. So we are just praying that help will come and arrive in time for February because that is when the surgeries are rescheduled. We just hope I will make it that long as well. Whereas it was hoped that I would be going for the surgeries this month and this way I would be starting the New Year as hopefully a brand new person, it is obviously not going to happen. Now I am scheduled to leave February 2nd and I have heart surgery on the 3rd and then my colon is being removed on the 18th. I will literally be going to Cleveland as an extremely SICK 32 year old, but hopefully coming back as a healthy 33-year old because I will be celebrating my 33rd birthday there. What a way of celebrating your birthday, right? But hopefully there will definitely be something to celebrate this year because hopefully we will be celebrating receiving the lifesaving treatment that I need and the start of a brand new healthy life. That would be the best birthday gift of them all. Technically speaking it is kind of better that I have the surgery in February rather than now in December because there will be more days being able to be dedicated to the TPN than if I went now. Since I suffer from this painful and rare debilitating illness, I can’t tolerate anything ‘foreign’ in me and therefore, we don’t know how my body is going to be able to tolerate these lines going into my heart. I can’t even tolerate IVs. In order for me to get my colon out and have that massive surgery, I need to have at least 10 days of TPN. If I went this month, we would have to use every single day and wouldn’t be able to miss one day acclimating to the tubes. Yet, now that I am going in February, we will have more time to go ‘slowly’ and hopefully get my body to work with us. As it is, they will be having me heavily induced on ketamine during this time so hopefully I won’t be bothered by the central lines. I am so malnourished and deprived according to the doctors that we are going to need those extra days to go slowly. So in a way it is better. However, even though we will be going to Cleveland for the massive surgeries starting February 2nd, we still are planning on making a trip to Cleveland on January 6th for a few days. It is important that we do so because we have to meet with some doctors and go over a few things. We need to see at this time the heart doctor, endocrine doctor, GI surgeon, neurological doctor, etc. It is extremely important to see the neurological doctor because he is one of the very few doctors in the world that is knowledgeable about my illness and has actually done research on it as well. This way the team will know exactly how to care for me during this operation because I cannot be treated like normal patient and even the slightest surgery, needle stick, tube placement, etc. will stir up my disease, cause havoc on me and my autonomic dysfunction, and cause my illness to spread. (Click NEXT to read on)
Posted on: Sat, 13 Dec 2014 13:25:16 +0000
Trending Topics
Recently Viewed Topics
© 2015