Just wanted to give you an update as to what is happening since we have been back from Minnesota since some stuff has come up.
Well… haven’t been home for very long and it appears we are off again! Yes… the phone call just came in today that we are headed to North Carolina to see a doctor for a ketamine coma. I have really been deteriorating and therefore, we are headed to North Carolina next week to see a doctor and to finalize everything.
Things have really been getting really bad lately. I have really been deteriorating and the doctors do not like at all what is going on. I am losing weight, I can’t keep food down, I am suffering from pain immensely, and my osteonecrosis is getting worse. My organs are also continuing to shut down and the doctors have said that if something is not done quickly, they fear that I am not going to make it much longer. They are quite afraid because even my BMI is very low, as it is only 10.2. However, I am really suffering in agony too because the pain is getting even worse if there ever can be such a thing.
The doctors really believe that I need to go out-of-the country to have a ketamine coma performed because that is where I would receive the much needed ketamine dose that is required to help me. The amount of ketamine that I need is way too much than is FDA approved and as a result, I can only be given that amount in other countries. However, since we cannot a coma out-of-the country, our next best option is to have one in the United States, but in North Carolina because it would be more intensive than the amount that I am getting in New York. Even though I am going for ketamine in New York every other week, the amount I am getting is nowhere compared to the amount I will receive in North Carolina. Plus, when I go to North Carolina, I will be getting the ketamine for a whole week. When I have the ketamine in New York, it is only for a day. Therefore, having the ketamine in a larger dose and for longer will hopefully turn this disease around and hopefully help more than it is doing here in New York.
When the doctor heard about my case, he arranged to see me immediately. We decided to also go on Father’s Day because this way my dad won’t have to take so much time away from work. With all the traveling and expenses, it is important for my dad to work as much as possible. We just came back from a week in Minnesota at the Mayo Clinic and now we are going to North Carolina. We will then have to return back to North Carolina for a 1 ½ weeks for the coma and then return also to the Mayo Clinic for 2 weeks for the surgery, which will all be time taking my dad away from work. When my dad doesn’t work… no money is made and that is something that we can’t afford. We are having a hard time paying the bills as it is. We are having a hard time paying the mortgage, putting food on the table, and getting treatment. Now with all these additional treatment expenses and traveling expenses, we need even more money. Therefore, it is more imperative than ever to find a way of raising money because we desperately need it in order to be able to get me this necessary treatment that I require in order to survive. So we made this trip to North Carolina during this time because it would only make my dad miss 2 days of work since the whole trip will be Sunday to Tuesday, and my dad doesn’t work on Sunday.
It just stinks that I have to pay all that amount of money to travel and to travel all that way for spending only 3 days in North Carolina. However, it is something that has to be done because we have to finalize everything and go over everything prior to having the procedure. This is what happens when you don’t get treatment at home.
So, we are heading down to North Carolina so that we can go over everything because everything has to be dotted and the t’s crossed before it is performed. This is also the first time I will be meeting with the doctor and the doctor also wants to meet me in person before he performs the coma so that he knows exactly what he is dealing with. After all, I am very complicated and no easy case. He also wants to go over and discuss everything in person so that we can be on the same page since it is a dangerous and radical procedure that isn’t given ‘everyday.’ Even though it is a ‘go’ for the ketamine, he also wants to make sure with his own eyes that I am a ‘go’ and don’t need anything additional such as testing or special meds prior to the procedure. Even though this is going to take extra time, which is time I can’t afford, it is all protocol.
I feel really bad though that we are leaving on Father’s day and my dad won’t be able to spend a nice relaxing day at home. At least though I will get to spend the day with my dad, and I plan also to celebrate the holiday the day before since we will be away the actual holiday. I already gave him his gift anyway, which were some shirts because he needed them for when we went away, but I would have liked him to ‘relax’ and enjoy a nice BBQ on his special day because those are things that he loves to do. But, we planned on going that day because we need to have this consultation as soon as possible so that we can have the coma done as soon as possible. The quicker all this is done… the quicker it can be arranged.
I was already told some info about the coma, but I don’t know all the details 100%. So far I was told that I would have a PICC line, which is a tube that goes into my upper arm and terminates in a large vein in the chest near the heart to obtain intravenous access. A PICC line provides the best of both worlds concerning venous access, and it can remain for a much longer duration than other central or periphery access devices. In this way, I will be able to get prolonged IV treatment, I will have multiple accesses obtainable with one access line, etc.
I was also told that I would be having the coma and being placed in the ICU, where I would be under constant supervision. In addition to supervision being performed by nurses and doctors, my dad will be remaining by my side 24/7. Unlike other times when I am in the hospital and my dad stays with me in the hospital during the day and then goes back to the hotel at night, my dad will be with me all the time and even spend the nights with me. They will give him a bed and everything so that he will be able to spend all the time with me while I am there. The reason for this I because of how dangerous and radical this procedure is. Also, since ketamine leads to hallucinations and such, my dad will be there in case a problem should arise. The doctor insists that he would be the first one I would be able to relate to and ‘listen to’ because he would be the most familiar to me. My dad is just so enthusiastic about being in the hospital and sleeping there. It should be an experience.
Even getting to North Carolina will be an experience. In order to go with the cheapest cost because we need to save as much money as possible, we are going to fly with a stopover to Rawley and then take a prop plane to Greensboro. Even though it is going to be more difficult on my body and take much longer than going directly to Greensboro, it is a sacrifice we have to make in order to save money. After all, any money saved is worthwhile because we need it to pay for treatment that we already can’t afford. Since we need to take a prop plane from Rawley to Greensboro, it only seats 4 people and has a weight requirement. I keep teasing my dad that the plane is never going to go up because he is too heavy.
Besides that though, I really am getting worse. When we go to North Carolina, we are also going to discuss with the doctor whether we are better off having the coma first and then the surgery at Mayo Clinic or visa versa. We are not sure what the right way to go about doing this is because the ketamine has the potential of ‘reversing’ and helping my overall condition if given in a high enough dose like if I was given the dose out of the country. Since I am not going to be having that high of a dose though, it is unknown how much I am really going to ‘benefit’ from the coma or get back. At the very least, I hope that most of my pain and suffering will diminish.
However, we don’t know if we should have the coma prior to having the surgeries at the Mayo Clinic because even though the coma could prevent some of the surgeries that are needed, most likely it won’t because it is not going to be that high of a dose as the dose given out-of-the country and therefore if I end up having the surgeries, I will most likely end up exacerbating and worsening my disease. Any bit of trauma worsens my disease and surgery is one way of spreading my disease. Therefore, if that should happen when I go for the surgery, it would have only have made the coma a waste of time. I would have undergone it for nothing because I would be back to square one. So we are going to go over with the doctors what the best way of doing this is because we don’t want to waste the ketamine, but I really need help badly including getting me out of my pain and suffering, which is something only the ketamine can do. Whichever way we go, whether it is to go to North Carolina for the ketamine or to Mayo for the surgery, we will be doing it during the last week of June and then do the other shortly right after (probably the middle of July).
It just stinks that I am going to be dividing up my family. My dad will be going with me during this time and my mom of course will be staying behind taking care of the house and my animals. I am definitely going to miss my dog and cat. They are like my best friends. Since I don’t sleep at night, they spend all night awake with me. Both my dog and cat love being on the computer with me.
In the meantime, I hope that I can last because it was determined that I have some kind of obstruction in my intestines. I had an x-ray and the doctors are not sure if it is an obstruction or if my colon has twisted, which is something that they feared would happen because of all the ‘air’ that has built up in me. I also am all filled up with stool and need surgery to remove all the stool in me since my GI tract is paralyzed, so there is a slim possibility that it could also be a ‘impaction’ instead of a obstruction or twist. Therefore, the doctors are hoping that I can make it to the Mayo Clinic because they had seen this going on. So with this occurring, it might force the surgery at the Mayo to come before the coma.
I am really nervous too because they are talking about giving me an ostomy bag. I really don’t want one. I feel like they are trying to do anything and everything just to keep me ‘alive’ and it isn’t really living. How many tubes are they thinking about putting in me? My dad keeps telling me that it ‘doesn’t matter as long as you are alive.’ But it does matter to me because having all these tubes is not living. They are trying to make me the “bionic woman!” They want to give me an ostomy bag, a central line for access in case of an emergency and TPN and for other necessary stuff, a tube into my intestines to hopefully find a place that is viable still so I can get nutrients in, as well as another tube to use as a ‘vent’ because my GI tract is so paralyzed and I get buildup of air/gas that I can’t expel. With the vent, I would be able to ‘open’ it up and the air/gas would immediately come out instead of having me bloat up and feel like a balloon waiting to be popped or feel like I am 9 months pregnant and ready to give birth. I know that these tubes are only ways of helping me and making me live, but it is not ‘living’ as far as I am concerned. I won’t be able to eat or drink like a normal person, I won’t be able to go to the bathroom like a normal person, etc. I know I will never exactly be ‘normal’, but I want to be as close to it as possible. I just don’t want to look at myself and see tubes coming out from everywhere. So hopefully I won’t have to get that ostomy bag. It is bad enough they are talking about giving me the other tubes… I don’t want an ostomy bag on top of everything else. I will have tubes to put things in and take things out. It is like I will be a machine.
In addition, we thought about stopping some of my medications because the doctors have read some studies that ketamine works better when there are no opioids in the body. In addition, the opioids are further shutting down my organs, so they doctors wanted to try to prevent that as much as possible since the disease is doing enough damage already. However, it was learned today that we cannot cut down on my medications because in order to do so, we would have to raise one of my other drugs, which is Methadone, and we cannot do that. I have prolonged QTs and as a result, it is too dangerous to raise the dose of Methadone that I am already on because it easily put me into heart failure. So there goes that idea.
I finally did get my glasses though. Thank goodness because I have been having such a difficult time seeing. It really did stink that I needed to get new glasses because they are so expensive, but I am really glad that they were done and I have them because I can see again. It took going to the Mayo Clinic to find out that I needed new glasses. Even though I was complaining about vision problems, no one could figure out why. It took going to the Mayo Clinic and looking at the tumor on my pituitary to figure it out.
I need specialized glasses because I have progressive lenses since I am far-sighted and I need reading glasses, but I have these prisms in my glasses as well to help me see. Due to my illnesses and the tumor, I have very weak eye muscles and I get vision abnormalities. I get diplopia, which is when I see a single image, but it is very blurred. Occasionally though I see double. Prism lenses are necessary to aid in getting the eyes to work together because the use of prism in the lenses tricks the brain into thinking the eyes are working together by shifting the image only slightly up, down, left, or right. My eyes are so bad that I need very thick prisms. Thankfully though my eye doctor can make them thin though so that I don’t have to go around wearing these very thick prisms. However, even though these prisms really help a lot, they are really expensive and they cost close to $1000 just to have the lenses done without the frames. So, you can just imagine the cost that I have to pay when I have to have glasses made because I can’t just have one pair made. I need to have 2 regular pairs made so that I can have one as a spare, as well as sunglasses because I can’t go out in the sun without sunglasses due to my hypersensitivity and disease.
But thankfully I got my glasses done. I haven’t really had glasses all week because of the change in prescription. The prescription was so different that I couldn’t even see at all with the other. Since I wasn’t wearing any glasses or prisms, I was having a very hard time seeing, as everything was blurred. However, now that I got my new glasses, I have to retrain my brain a bit to get used to wearing them because it has to ‘relearn’ how to wear the prisms. Never a dull moment. But it is still much better than not wearing them.
Well… I guess that appears to be all that is happening at the current moment. I hate the weather that is going on. It is really affecting me. I keep blistering and my autonomic dysfunction keeps going haywire because of the weather. I just wish this would all just disappear.
I am in the process of reading a good book. I am reading the new series by Charlaine Harris. It seems pretty good, but of course I am only in the beginning of the first book, so it is too early to tell.
Well… I guess I am going to get going. When I know more info… I will write more. Please continue to pray for me and please help me continue to raise funds, as I need them more than ever. With all this much-needed upcoming treatment, I desperately need funds so that I can get it. If you can please spread the word and bring attention to my website, I would really appreciate it. If you can think of any ways to fundraise or anything, please let me know. Any help would be appreciative. After all… any $1 raised is one less than I have to come up with.
Thanks again for all your support and encouragement.