Well I made it to the Mayo Clinic and I have so much to tell you. However, I don’t know how much I am going to actually get to say to you because unfortunately we have a little situation going on here. I am having extreme difficulty with my left arm, as it went completely ‘dead’ on the plane and as a result, it is extremely difficult to do anything including type. But I wanted to try to give you at least somewhat of an update, so I will try my best do as much as I can.
What a trip it was to get here. It was really nasty weather outside when we got to our stopover in Milwaukee and as a result, I ended up slipping when I was trying to board the plane. Even though I was in a wheelchair, you can only take the wheelchair so far and as a result, I ended up slipping with my crutches when I was getting up out of the wheelchair and leaving the actual jet way and going onto the plane. Thank goodness I didn’t fall and was able to catch myself, but I knew that something happened because I could feel a difference in my body. My body had jerked and it went through some spasms a little. But I didn’t think anything severely wrong happened.
However, I don’t know how much is from the ‘fall’ or from the actual falling asleep on the plane, but my arm went dead after I fell asleep on the plane on the way to Minneapolis. I wasn’t feeling well and I fell asleep. Dad happened to be his usual devious self and got pictures of me that I would never expect. He actually went into my bag and took out the camera to take pictures of me because he thought that it was funny the way my face was. In fact when I woke up and saw what he did, he said, “I would have posted them on the Internet if I knew how!” I couldn’t believe what he did after seeing them. Only my dad!
However, also when I woke up from that ‘nap,’ I couldn’t move my left arm. We don’t know if it had something to do with the ‘fall’ earlier or because maybe it dealt with the way I was sleeping since I have no fat or padding to cushion the nerves. It seemed though that my arm and especially my hand were completely dead. It appeared possibly to be a pinched nerve and I couldn’t do anything. You know when you hand falls asleep completely and you can’t use it or move it? That is what happened to me. I couldn’t even move my fingers. I was really afraid because nothing I did would enable me to move my hand or my fingers and I couldn’t ‘wake’ my hand up.
This isn’t the first time this has happened either. I have had it two times about in the past before and when I went to the doctor, the doctor is not sure what to make of it or why it occurs. She is afraid though that one time it will happen and the function will never restore. So I am always afraid of that happening. In the past it could take like a month for me to regain movement and function of my hand. I was really freaking out because not only couldn’t I move it, I was afraid it wouldn’t come back. I couldn’t do anything with my arm.
So I have been trying and trying to wake my arm and hand up ever since and hasn’t really gotten anywhere. It is pretty ‘weak’ and still now able to do many things. I can’t even really open it or close my hand. I told my dad that he is going to have to help me brush my hair and wash it because I can’t use my left hand basically at all. I can’t even hold things in it. I am barely able to even use the crutches with it, but thank goodness I am still managing to do that. I just hope that my hand wakes up soon because it is really annoying and you can’t do anything really with it.
It was so weird coming into Minneapolis. Unfortunately there were no direct planes into Rochester, so we had to travel into Minneapolis, which was 80 miles away. I am surprised the flight wasn’t canceled though because there was only like 29 people on board. The plane wasn’t even a small plane either, as they took one of the Boeings. But, we made it to Minneapolis and we were very lucky to have a very lovely couple drive meet us in the baggage claim and drive us to Rochester.
Since Rochester was some 80 miles away, we were going to use a prop plane to fly over there, but we decided it probably would be easier considering everything including the weather to drive the 80 miles instead. So, the pilot and his wife that was supposed to fly us ended up driving us. They were such a lovely couple. We had such a great time traveling with them and even requested to have them take us back. We didn’t know if they would be able to, but we were hoping. When we found out today that they would be able to take us back to Minneapolis to get our return trip home, we were elated. Since we will have to return back to Minnesota shortly, perhaps they can pick us up again. They were the sweetest and nicest people.
The Mayo Clinic is simply amazing. It is simply HUGE. There is so much to do. It is like Disneyworld for the sick. I kind of feel really comfortable here because no one really stares or anything because everyone is usually sick and everyone (like all the staff in all stores, hotel, restaurants, etc.) cater to you. If you are weak or get tired when you are out, you can call an ‘escort’ service or get a wheelchair in a minutes notice so that you don’t have to worry about passing out or collapsing. You don’t have to worry about eating because all the restaurants cater to you and prepare the foods to situate any need that you need. They also make all dishes ‘healthy’ in general because of the location and because they know all the people here are really there because of their health anyway. There are tons of shops allover the place as there are stores after stores after stores. Now I know how this town makes it money because you probably can literally go broke coming here because there is just so much shopping to do. The have literally every single store you can imagine.
It is like this huge campus that is filled with miles of stores and hospital affiliated places that see patients. It’s simply amazing. You don’t even have to go outside to go to any of the stores or to any of the hospital buildings. Instead, there are skyways and a ‘subway’ system that consists of underground tunnels to take you. It is awesome especially since the weather has been so gross here. It has been so disgusting that we have been freezing. It is so cold, rainy, and raw. We had to literally have the maintenance man come to our room and shut the a/c off so we can get heat because it was too cold.
What is so weird though is that everything closes on holidays and at 5 PM. So when we arrived we really couldn’t do any shopping or anything else whatsoever because it was Memorial Day and everything was closed. Even stores like Barnes and Nobles was closed. I thought stores would be open especially since people were ‘off’ from work and they could do some shopping since they had nothing else really to do. But dad told me that this was how New York was back in the day before it became commercialized as it is. What a difference.
There is also this huge Mall that I really want to go to. It is called Mall of America and is supposed to be the biggest mall in America. It is supposed to have every single store you can imagine plus it has an amusement park with three roller coasters (even some that go upside down), a Nickelodeon Universe, a mirror maze, a underwater aquarium, Lego world, etc. It is something that is supposed to be out of this world and something you could spend the entire day at. It is even still expanding as it is adding an Olympic size ice rink to it. I made dad promise to take me there when we come back because I really want to go and do the Mirror Maze but we really don’t have time during this trip. So hopefully next time we will be able to go.
I have never seen such a huge hospital and I am so tired from today’s appointments. They have been nonstop from 7:30 AM to 5 PM. It was crazy… especially with how much walking we had to do. We must have walked over a mile easy because we did so much walking to appointments and this place like I said is HUGE.
Thank goodness I had the appointments set up the way I did because if I had the second appointment first, I would have been up the creek because even though all the doctors were concerned about me and fearful of my life, the second doctor was a mess. He kept saying how I was going to ‘die’ soon and was really SCARED. It actually took my first doctor to kind of ‘calm’ him down.
After seeing the first doctor, we decided we would meet later to decide if I would have to be admitted or anything based on the results she received. So when I got the call that she wanted to actually ‘see’ me, I was kind of scared. I was expecting to get a call from her, but since she physically wanted to see me, I didn’t know what to expect. Today I had so many tests such x-rays, EKGs, lots of blood work, etc. I met with lots of doctors too such as my gastroenterologist and endocrinology. It was the endocrinologist that really was the doctor freaking out because he saw how low my BMI actually was and it was below 11, which is basically death.
It was determined that I needed to be hospitalized and have surgery. So I am going to have to come back because there is too much to be done before the hospitalization takes place and since I have to leave on Saturday to go home, it would never be done. Plus, I would need to be hospitalized for like 2 weeks and there really isn’t enough time. So it was determined that even though they are extremely fearful for my life, I will return for another visit in about 3 weeks and be hospitalized at that time and have the necessary surgeries and such then. But I am still going to have the appointments that I need in the next few days, so it won’t be pointless to be here. There is still so much to do. Tomorrow we meet with even more doctors and such including cardiologists and dieticians, and Friday is even more doctors.
I have to be admitted because not only am I really in bad shape, but everything that needs to be done can’t really be done in an ‘outpatient’ setting. Since my GI tract doesn’t work, it has caused so many problems that need to be handled. One thing that has happened is that I am very loaded up on stool because I can’t ‘empty’ it since I have no neurological function of the intestines or stomach to ‘empty’ it. My GI system is basically ‘dead’ and therefore nothing is being ‘pushed’ through. So everything is literally at a standstill. Since I cannot empty it with enemas, laxatives, etc., they are going to have to use surgical techniques to do it.
It is going to be one weird and scary process. Since I am so loaded up they have to be extremely careful because it can really cause dehydration and electrolyte imbalance. It is also going to cause me to lose more weight because some of weight is made up of this stool. I could very easily walk out weighing in the 50s. I told the doctors that I would freak out. But that is how loaded up I am.
I also now have the reason why there is just so much mucous coming out of me and why it is so foul smelling. The doctor told me that I am so ‘loaded’ up and since it is sitting there so long that it is literally ‘rotting.’ At least I was finding some answers to things.
In addition, they want to do surgery on me to explore and work on my swallowing since I can’t swallow. They are afraid that I won’t be able to get down my meds whatsoever. So they are going to do surgery on my esophagus, biopsy the esophagus, and explore at the same time. However, they have to be careful with all my underlying problems because they can really exacerbate them. They are also going to have to give me ketamine because that is the only thing that will help keep the neurological illness from becoming worse and keep me more comfortable.
The doctors also want to put in a port in me to try to feed me. They want to first try also dragging a line into me that will go through my stomach and into my intestines to try to find any portion of the intestines that might be viable, but they don’t know if they will be able to do so. Either way, they want to put in a port (probably a central line or something) so that they will have access to feed me and a way to put the IVs in and give me medication. They figured that if the tube into my intestine doesn’t work, I will have the port to give me TPN and I will go home on that. However, the doctors are really worried about a process called “refeeding syndrome,” which is a syndrome consisting of metabolic disturbances that occur as a result of reinstitution of nutrition to patients who are starved or severely malnourished. Refeeding syndrome usually occurs within four days of starting to feed. Patients can develop fluid and electrolyte disorders, along with neurologic, pulmonary, cardiac, neuromuscular, and hematologic complications. So they are really scared it is going to happen to me and as a result, they are going to have to go extremely slow. They said they will have to go so slow that they will basically start with sugar water and increase the calories ever so slowly because of how hypersensitive and complicated I am.
Because I am so complicated and so hypersensitive, they are taking every precaution and trying to make it as easy on me as possible. They are going to try to make it as painless as possible and since I can’t even tolerate IVs in general, they are planning on placing all the lines (including IVs) when I am under general anesthesia. So that should be good. They really seem like they are willing to work with me.
I really hope that something good comes out of all this. Not only are the doctors talking about putting lines in, but they are talking about putting lines in that I can open up to ‘vent’ if need be since I build up with gas and cannot eliminate it on my own due to my severe paralysis of my GI tract. I have become very bloated and distended because I fill up with gas and such and can’t eliminate it. In fact, I become so distended that it looks like I am ready to give ‘birth.’ I joke around that I need to be popped, but in reality it is incredibly painful and bothersome. Well, the doctors said that with these tubes, I will be able to ‘vent’ out the air and gas, which will eliminate the bloating and distention. They said this might make me feel better especially when being ‘fed.’
So a lot is going to be happening. The only problem is that we don’t have the finances or time to do everything and we were planning on going to Georgia for the high dose ketamine coma and going to California for the tubes again in June. However, now with having to come back to Mayo, we honestly didn’t know what to do because of course we couldn’t do everything. So we sat down with the doctors and discussed everything and went through what each place was going to do. We tried to figure out where I am best off going since I don’t have the finances or time on my side.
It was determined that I probably would do best in Mayo and Georgia. I need Georgia for the Ketamine, but even though we had it planned to go to Georgia shortly after coming home from this trip, as we were planning on leaving June 10th, we thought it would be better to postpone the trip to after Mayo. Even though it would hopefully work and give me the pain relief that I need, the doctors and my dad didn’t want to go through it all to only have it all aggravated by the procedures and surgery that would be done right after at the Mayo. So they thought it would be better to save it to afterwards and this way whatever they do in Georgia wouldn’t be ruined by surgery or procedures because any type of trauma will always have the chance of exacerbating my illness and making it worse. It would be pointless to have made it better for it to only be made worse again when we went to the Mayo a week or two later. You know?
So, we decided to hold Georgia to mid-July. I just hope that I can last that long. We decided to go with Mayo over California because they are going to do the same thing that California is going to do with the tubes and it is easier to get to. Plus, they are willing to do that other procedure of ‘unloading’ all the stool from me, as well as putting in the vents and such. Plus… even though both hospitals are outstanding, the Mayo Clinic is supposed to be top notch and known for only the sickest and rarest cases that can’t be helped elsewhere. So I am hoping that going to Mayo will be the better place. The only thing that is bad is that the doctors did say that they think it will end up after all this still needing the multi-visceral organ transplant, which is the radical transplant of the stomach, small and large intestine, pancreas, and liver, and they don’t do it. So, that is the only thing… whereas California does. So like always I am between a rock and hard plate. I just hope I am making the right decision about going to the Mayo instead.
Before I go, I want to share some ‘funny’ stuff. I am here with my dad of course. He is my best friend as well and I am so fortunate that I have him. I love traveling with him. So even if nothing ‘good’ happens, at least I get this time to bond with him and be with him because he is always so very busy with working. He works so hard when we are home trying to make ends meet… as he is out of the house at 4 AM and not home til 7 PM. Then from working so hard, he always goes to sleep. So at least I get to be with him during this time and spend ‘quality time’ with dad. I just love being with him. There is nothing that he wouldn’t do to get me well and it hurts him so much that his hands are tied. It hurts him that no matter what he does, he can’t get me well or no matter how hard he works, he can’t afford the much-needed treatment that I require to survive and make it. If something ever happened to me, he would never be able to continue on.
Anyway, being with my dad is always an adventure. We always do the coolest things together and he always makes me smile even when there is absolutely nothing to smile at. He always finds a way to make me laugh and be happy. He is one amazing person. If I didn’t have my dad… I don’t know what I would do. That is one major reason I want to get better. I want to get better for him and so he can see me become the doctor I so want to be. He is the major reason why I am holding on for so long.
Well… when we were leaving today for the hospital, he said that he wasn’t going to have breakfast at all. But when we went to get coffee, he of course saw the eggs and sausages and nothing gets in the way of that. I knew once he saw eggs and sausages that would change. As dad says… “Load them up!” He can literally go through at least 3 plates of them. I was like “I thought you weren’t eating.”
So that appears all. I guess I will stop here for now. I think I wrote enough and there really isn’t much else to say. I will definitely keep you posted as to what is going to happen, but I just wanted to let you know the latest as to what has been happening here. By the way, I forgot to add that the team that will be treating me in the Mayo consists of 80 GI docs because each person does their own thing. The doctor also told me not to hesitate to call her for anything, and she will always call me back. So hopefully I am in the right place and they don’t call it the MAYO CLINIC for nothing. But we will soon find out. Like my dad has said in the past, “It won’t be the first time we have made a mistake!” It is just that we can’t afford to make them anymore, so hopefully everything will go well! Fingers and toes crossed!!