Please help SAVE MY LIFE!

August 13, 2014

on August 13, 2014



Well I am officially in Cleveland! I finally made it here! What a day it has been. I can’t believe all that has happened today because my life is like a soap opera… never a dull moment. From the moment we left the house to start this trip… nothing went right!

I should have realized that today was going to be a bad day from when we first began our trip. Right from the beginning it seemed like this trip was doomed. We basically just made our plane and we are so lucky that we did because we couldn’t afford to miss it. We had appointments scheduled in Cleveland today and therefore, it was imperative that we made the plane because the next flight afterwards would have made us miss all our appointments. We hit absolutely no traffic whatsoever to the airport. However, just as we were approaching the airport, there was so much traffic because not only were there was emergency vehicles blocking off lanes so that they could take care of a car breaking down, but of course everyone passing in their cars had to stop and look! The way that there were emergency vehicles blinking and people were stopping and looking… you would think there was a huge accident or something. But guess what? There was really nothing going on. It just appeared that a car broke down or something. In fact, when we were at the skycap checking in our suitcases, everyone was even talking about what on earth that “hold up” was. But you know “New Yorkers”… everyone has to look if they see blinking lights! But thankfully we made the plane!!

What a trip we had though. Between the traveling, the massive infection that I am currently suffering from, and then my overall condition… I didn’t handle this trip to Cleveland very well. My disease really stirred up and my body really was shutting down on me. Even when we got to Cleveland, the impact that the traveling took on me was enormous. My dad could barely keep me awake. When we spoke to the doctors, the doctor said that it is because I am getting so much worse and I have all those poisons and toxins in my bloodstream and organs that are further complicating things. All those poisons and toxins are literally killing me and that is why I am in such need of having my colon taken out and of the transplant. I am weakening so much and I can’t tolerate anything stressing out my body… even a trip on a plane to Cleveland.

When we got to Cleveland, I really didn’t have time to rest. I couldn’t even open the two boxes that the front desk said that I had delivered for me earlier. Had to get straight over to the hospital. Thank goodness though that the hospital is only literally next-door to the hotel. In fact, if you think of the letter “I” the top and bottom of the “I” is actually the main hospital and all doctors’ offices. The middle part, which is the part that connects the two hospitals together, is the hotel. If you don’t want to walk outside to the different buildings, they are interconnected by skywalks.

So even though I am not technically “admitted” into the hospital, I am still really in the hospital. The Cleveland Clinic is one of the BEST hospitals in the United States and they really don’t keep patients in the hospital. They really try to minimize the stay of each patient in the actual hospital. They much rather treat you on the outside. In addition, with my disease, the doctors rather keep me out of the main hospital and being officially admitted as much as possible. That is why even when I am “home” … doctors try to keep me out of the hospital as much as possible. They are afraid that I am going to catch an infection or something because I have no immune system and so susceptible everything. They also are afraid of how I will be treated because I can’t be treated like a typical patient. The slightest wrong move can cause havoc on me.

I really came this week to Cleveland to have the final tests performed, to have the pre-surgical testing, and to meet with the team to make the final preparations. I have to meet with anesthesiology and internal medicine to not only be ‘cleared’ for surgery, but they have to see how they are going to put the Central Line in me because I can’t have this massive surgery without it. It is way too risky of an operation in order not to have it in me because it is the Central Line that used to give medicines, fluids, nutrients, or bloods.

I had so many appointments today including a CT scan of my lungs and a stress test of my heart because the doctors needed to know how my heart would function during this operation. After all, this operation is extremely dangerous and will take a huge toll on my body. It is the most dangerous of all transplants and is so rare and dangerous that only 6 hospitals really do it in the United States. So they really needed to see how my heart would do.

However, like I said before I was really ill from the trip and from everything I was suffering from. No matter where I went, I had a difficult time staying awake and therefore, my dad was literally carrying me everywhere. I slept before each test, during each test, and after each test. It was horrible.

One test that to definitely go for was the Stress Test. However, they had to stop it right before they gave me the intravenous drug because they said it was too “dangerous” for me. They said that they couldn’t perform this particular stress test because they didn’t know the exact amount to give me since I am so underweight and ‘small.’ They didn’t want to ‘kill’ me and they told me that the slightest amount that went over the amount that was needed could do me great harm. So they said that I wouldn’t be able to have this particular test and a different one would be needed to be used.

However, the problem is that I am supposed to be leaving tomorrow afternoon to go home after I have my other appointments. Therefore, I really don’t have time to have any time extra to fit in any other tests. So I don’t know what is going to happen. I really can’t afford to stay longer than tomorrow because we aren’t prepared to stay longer, as we don’t have the funds, medication, clothes, etc. and therefore we cant miss our flight. But then again I don’t want to postpone the surgery either, which is supposed to taken place august 25th because we definitely cant afford for that to happen with all the poisons running through my body and the way it is shutting down. So I don’t know what is going to happen. I guess I will have to leave it up to the “team” tomorrow when I see them!

It really stunk not being able to have the stress test especially because not only did I really need this test for the upcoming surgery, but also I couldn’t eat or drink all day because of it. So I went the whole day without eating or drinking for nothing!! I really wanted something too… especially since I was on the plane and everything, but I couldn’t have anything. To think… all that suffering for nothing! When I was done with the stress test, the doctors felt so bad for making me starve for no reason that they were willing to get me anything and everything to eat.

Like I just said, I have an appointment in the morning with my “head” doc and I also have an appt with interventional radiology. So we will see what will happen at this point.

To complicate matters more, my right hand is kind of “dead” and won’t wake up. I have gotten this before but it has always been occurring to my left arm and hand. The doctors don’t know what causes it and therefore, I get really scared because I don’t know how long it is going to last or if it is even going to get better. Fortunately the other times it has all improved, but you never know. All the times that this has occurred, I have woken up and it has felt like my hand has fallen asleep. Then I can’t wake it up and it is so numb and hard to move because it had fallen ‘asleep.’ It is almost like having a ‘dead’ hand. Then I get this tingly all throughout my hand like it is starting to wake up, but it just stays there like that… never getting better. In the past it has lasted a couple of days, but you never know if it will always be that way. I get so scared from it happening not to mention how debilitating it is because you can’t really use it like I need to.

In addition, we also don’t know if I am having a reaction to the antibiotic that I was given to combat the infection that I have. I noticed some red marks on my neck and shoulders this morning, but I thought it was just the way I was laying or maybe from rubbing it. However, when I looked in the mirror later on today, I saw that there was actually a rash going on. We don’t know how I got it or if it is actually related to the antibiotic. So we really don’t know what to do. We already know that this antibiotic makes me feel nauseous and such especially since it is such a high dose because the infection is so bad. They really have to knock this infection out because not only do I need to get rid of it for the upcoming surgery, but it can really severely cause a lot of problems and even potentially ‘kill’ me because I already have all those toxins, poisons, and bacteria running through my body from my failed GI system. So it is just making my body further weakened.

So I really had some day today!! It was really a tiring day and things were just not going well. Of course when I got back to the hotel, I still continued to ‘sleep’ and if it wasn’t for my dad waking me up at 7:30, I probably would have slept through the nite. However, my dad said that we had to go eat dinner and I had no choice. I pleaded with him to miss dinner tonight because I wasn’t feeling well, but of course I lost the battle because he insisted that I couldn’t afford to lose an ounce. So I was dragged to the restaurant to eat.

Just to finish up the wonderful day, we couldn’t even watch TV tonight. We ended up having a storm here in Cleveland that knocked out the satellites. My dad said to me “Better watch out that the power doesn’t go out too.” But I was like “Did you ever hear of backup generators?” So you know what he said? He was like “Maybe they don’t have!” I was like “I am sure that they do especially since they are a top-of-the-line hospital.

Oh yeah… just as expected when I got here my packages were here waiting for me. Dad couldn’t believe that I didn’t have them shipped to the house instead. But they are sooo cute. I keep cuddling with them. What a way to make my belly feel better.

Wanna hear something hilarious? We needed ice for our sodas and my oranges. So you know what my dad did? He went to the ice machine with a bag of ice on top of just filling up the regular ice bucket. He brought back so much ice that he emptied the entire machine. So me being my stupid self said to him “you better call the front desk and alert them to the fact that they have to refill the machine because its empty.” I was thinking that he should do that so that I could have my ice later because I knew I would need it. However, little did I know that all you had to do was ‘wait’ for the machine to make more? My dad was like “You don’t have to call… you just have to wait for the machine to make more!” I am so naïve!

To top everything off, there is a lot of press going on here since Robin Williams died. Apparently Robin Williams had 2 heart valves replaced here at the Cleveland Clinic and therefore, they are saying that this could have caused his death. They are saying it because according to the Clinic, “major heart surgery often leaves patients with depression, which can sometimes prevent you from leading a normal life.”

So that appears to be all that is happening. It’s going to be a busy day tomorrow (Wednesday). I just wanted to write a bit and let you know all that has occurred so far. I wonder what will be the outcome of the upcoming surgery because we are so close to having it done and yet we have all these complications. I know they won’t do the surgery unless the infection is definitely cleared up, but I am hoping that the scan won’t hold things up further. I also hope that they won’t have me make an additional trip here just for this scan because besides there is no time, I can’t afford it and it takes too much out of me. I get too sick from the traveling and I really can’t do it. I hope that the next time I come back here it is for the surgery.

Well… Thanks again for all your continued support and encouragement. Please continue to pray for me and I will let you know what happens! Thanks again for everything. I can’t tell you how much I appreciate all that everyone is doing!! Knowing that I have a “support team” really makes a HUGE difference in fighting this.




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