Well… I am officially home!! It has been a long two days, but I am officially home. However, I am having to go back to Cleveland on Sunday, August 24th, so honestly I don’t know why I should even bother unpacking. I am just going to enjoy this week at home. I am going to especially enjoy it because who knows what is going to happen when I go back to Cleveland. A lot has changed in plans! I just hope my body holds up for everything now!
Tomorrow is my usual Friday surgery. Going to get my intestines cleaned out because my entire GI system is paralyzed and therefore, nothing moves through it. I am getting intoxicated as a result of this and it is very likely that I can die from all these poisons spilling over into my bloodstream, as it is poisoning my blood, organs and even my brain. However, usually I am excited to go for this surgery and say “TGIF” because not only is it saving my life by trying to remove as much toxins as possible, but it is also making me more comfortable. Since nothing really moves in my GI system, I get so bloated and my abdomen gets so distended. I literally look like I am 9 months pregnant. I walk around the house waiting to either “give birth” or for someone to pop me!
In addition to the cleaning out of my intestines though, I also have to have the surgeons go down my esophagus and go into my stomach to do some biopsies. It’s all needed for the upcoming surgeries that are taking place in Cleveland. Hopefully everything will go ok, but I am scared because it is a double whammy tomorrow and my body is weakened already and has just taken a beating from this trip to Cleveland. Traveling is really hard on me and I literally just got home. I didn’t even have to time to rest and gain my strength.
Well… as I was saying, there has been a change of plans!! I was originally scheduled to have my colon taken out on August 25th, but due to how sick I am, there has been a change of plans. It just isn’t possible to do the surgery right now before some other surgeries take place first. It turns out that when I do have the colon removed, I will have to be hospitalized 14 days prior because of how sick I am. I can’t believe how long I will have to be in the hospital for… just to have my colon out. It will be at least 14 days prior, at least a 10 days in the hospital, and then I have to remain in Cleveland for at least another week to make sure that everything is OK and I am able to go home. However, after going for some more tests and meeting with the team, it was decided that I might be better going about it a different way instead of just jumping in and having the colon surgery. They thought I should have some other surgeries and procedures prior and then have it. So that is what we are doing.
This also scares me that I will have to spend so much time there because we don’t have the funds to do that. I know I sound like a broken record already and I know I am begging and pleading, but please help. We desperately are in need of help. We desperately need donations because we can’t afford treatment to save my life without your help. As it is, I already received a phone call from the Cleveland Clinic asking me to pay for the copayments and everything to the upcoming surgeries that I will be having and I didn’t even have them. They said that since I didn’t have the money today, I will have to pay it the day of surgery. Can you imagine?
I hate knowing that my life literally rests in the hands of others, but I am hoping that people will do what is right and help me! Just remember that I am appreciative of any donation and no donation is ever too small. I only wish there was a way to get on television or in the paper because this way I can maybe get more awareness to my story which will bring in more funds.
It turns out that when we go down on August 24th, it will be for other surgeries and procedures that are very important. To begin with, I will need to have ports and lines put into me. Not only do I need them for the actual surgeries for the transplant and for the removal of the colon, but also I need it to actually buy me time!
I will be having surgery on my heart, veins, and arteries to put these lines and ports in. However, I have to make a decision by tomorrow as to which type of port and line I want to use because I have an option of 3 different ways to go. They are going to use these lines to have emergency access to my heart, give me fluids, give me blood, take my bloods, give me medications, give me food, etc. With having these lines, I won’t have to worry about being poked all the time to get blood anymore. I also won’t have to worry about swallowing pills so much because they can be given through the lines, which will make it easier on me as well. It also means that I can be given more potent meds because intravenous meds are always stronger since they go straight into the bloodstream. But a big plus and hope is that these lines will be able to supply nourishment to me.
I always thought that when the colon came out that I would be able to gain weight and hopefully be able to get back to a somewhat normal weight. However, I was told that the chances of that happening is basically nil. The doctors said that I am so far behind that I probably won’t ever be “normal” weight again. The point of the colon coming out is to make me “more comfortable” and to help buy me time until I have the actual transplant.
The real cure to this entire puzzle is to have the transplant. If I had the transplant, then I would be able to most likely gain the missing weight that I am missing and be more of a normal weight. I was kind of upset about this because I was hoping that the colon coming out would help me be able to eat again and able to gain the missing weight. After all, I hate the way I look and wish that I would be more normal looking. I look like an emaciated skeleton.
The doctors did say that the key to the puzzle and to keeping me alive is TPN. They said that I desperately need this in order to keep me alive and to hopefully buy me the most time. TPN is “total parenteral nutrition” and it is dripped through those lines and ports that they are placing into my heart. However, TPN is extremely dangerous and you can’t be on it for long. Therefore, it is really important that I get the transplant as soon as possible so that I can get off the TPN.
TPN is very risky. You can have mechanical complications from the catheters that will result in pneumothorax, vascular injury with hemothorax, brachial plexus injury or cardiac arrhythmia. However, venous thrombosis is one of the two most common problems that occur after central venous access is established. The other is infection. Venous thrombosis is associated with significant morbidity rates.
Having TPN is not a cure. It is only a “band aid” to help buy my some time until they figure something to work. Yet, I have had TPN before a couple of times and I have failed it. So we are not sure if it is even going to work this time around. We are hoping that it will though.
I have to decide which type of line I want to place into me. We are hoping that the TPN will work through these lines, but even if it doesn’t we still need it for other reasons. There are 3 choices that I have. I have a choice of a line that goes through the heart and jugular vein, one that goes through the sub clavicle and the vena cava, and then one that is called the PICC and that goes through the arm and then into the heart through the vena cava. Each comes with their own plus and minus. I am really tending to think I am leaning towards the PICC because it comes out of the arm and looks nicer, but if I go with the PICC, it will mean that I will have to have another line put into me such as a line that goes through the jugular and into the heart because this PICC line won’t be sufficient. But that is ok because it will only be there for the time I am having the surgery.
In addition to this surgery, I am also going to have surgery to “clean” me out. I have lots of toxins in my system since my colon and GI system is paralyzed and even though I go every Friday for the surgery to “clean” it out, they are going to do a more invasive job because they are going to do it under general anesthesia.
Another surgery that will also be having is a surgery to deal with the infection and such that is lurking in my mouth. I have been on antibiotics and I have been continuing to suffer. I desperately need to have lots of surgery in my mouth and this way they will do it then.
Finally, I had a CT scan during this past trip to the Cleveland clinic and it appeared that I am drowning in my fluids. So I will also be having my lungs cleaned out as well.
At least when I met with the doctors and the anesthesiology team when I went to Cleveland, I got to meet with the actual “team” that would be in the room during the operation. Usually they don’t know the anesthesiologist who will be on the case until the last minute. However, I was fortunate enough to have the anesthesiologist say that he was going to take the case because of how difficult I am and how he met with me and knows the case and such. So I am really glad because I really liked him and felt comfortable with him being there.
So that appears all that is going on. Not to cut it short, but I am not really feeling well and I am having to get ready to leave for the surgery today. My right arm still hasn’t officially “woken” up and so I am still battling a sought of sleeping arm. Never a dull moment.
Thanks again for all your continued support and encouragement. I would definitely have not made it this far without you.