I know this is probably going to be a bit incoherent and a bit probably discombobulated, but I just wanted to write an update on all that has been happening because so much has been happening and I wanted to keep you all in the loop. I am not doing too well and just came home from the hospital. In fact, I am on so much medication and things are so bad that we might be headed back at any moment, so please bare with me if things are a little fuzzy or repetitive because I am under a lot of meds, stress, pain, etc. but I wanted to make sure that I kept you abreast on everything that has been happening.
Like I said… I just came home from the hospital and it looks like I am probably might be headed back there. I had the first surgery out of two surgeries two days ago, which was the trial for the pumps to be put into me. They want to put the pumps into me for various reasons. I am really deteriorating and they think it is time that they put the pumps in me because first of all, I can’t really swallow anymore. I take like over 50 pills daily and unfortunately, I can’t really swallow. The disease has really interfered with the ability to swallow and it is getting to be extremely difficult to get anything into me especially me medication, which I take over 50 pills. I also do not absorb anything because of my extreme paralysis of my GI system. I can literally take medication and then when I vomit over 12 hours later, I can actually bring the pills down to my dad in a cup because they are full and not dissolved. So they really aren’t doing me any justice really either. Therefore, the pump will eliminate that problem because instead of first having to dissolve and being absorbed in my GI system and going through my bloodstream and such, the medication will be delivered right into my intrathecal space in my spinal cord, which will go directly to my brain. That being said, it will be so much stronger as well. So that is another reason why the doctors want to do the pumps as well. Since I am suffering in pain and deteriorating so rapidly, the medication that I am on now is not cutting it anymore. Therefore, I need to have more powerful medication and by having the pump deliver it directly to the intrathecal space and having it go directly to my brain, it will be so much potent. The pump will also allow me to get medication that I cannot necessarily take by mouth because it doesn’t come orally. There is this one medication for example of “snail venom” that is considered still experimental but it has been shown to be effective, but can only be given through the pump. So hopefully with all the added bonuses that the pump can give me, it will be a blessing in disguise even though it will be a major operation that will extremely risky and it will certainly be amazing to see how they are going to get it implanted in me considering how tiny I am. In fact, that is one of the reasons that a plastic surgeon will be scrubbing in and performing the operation right beside the neurosurgeon.
Anyway, in order to have that permanent implant of the pump placed in me, which the actual implantation will be supposed to take place on Tuesday, August 27th, I had to go for a trial to make sure that I can withstand the pump’s morphine at the very least because it isn’t the same as when I take it orally as well as other things. When you get morphine put into the intrathecal space, it becomes so much more potent that it can really actually kill you and you can have such severe side effects. So… I had to have a trial in the hospital to make sure I could tolerate not only the medication but some of the lines as well. I was then placed in the ICU to recover.
In terms of the actual operation, it went ok. It was pretty much standing room only in the operating room, which I am kinda used to because they had to have specialists in the room for everything and to monitor every aspect of me because I am so very complicated. For example, I even had to have 2 anesthesiologists because they had to work together to make sure that I came through the surgery. It was a longer and more complicated surgery than the typical patient and thankfully I made it through the actual surgery. However, I ended up having lots of complications afterwards.
All throughout the night they tried to keep me as sedated as possible, but my blood pressure constantly fell and gave them problems. The highest my blood pressure would read would be in the 80/50 and then it would fall into the 50/30 and have a pulse that ranged from 50 down all the way to the 30s. It really was all touch and go. They kept trying to give me fluids to try to build up the pressure and such but it was extremely difficult because the IV lines were burning up my veins and flaring up my neurological disease and autonomic dysfunction. The IV and the fluid running through it were really escalating my pain and all my diseases because I am so hypersensitive and the littlest thing is such a major thing to me. I can literally feel anything and everything, which includes the liquid running through my veins. So since they really had a hard time running the IVs because of the escalation of my illness, they were really having a hard time managing me. The nurses in the ICU all said that I needed to be in a hospital out-of-state that was better situated for this. That is only more reason why I need to travel to top hospitals like HOPKINS in Maryland or STANFORD in California. But the truth is that sometimes I just need to go to a hospital in the area, but unfortunately they aren’t totally equipped to handle me.
I was taken the next day to hyperbaric oxygen in hopes that it would help me heal. What an experience. I never had something like that done before. They placed me in a tube and I went in a ‘dive’ to hopefully try to help me. I didn’t go to the necessary depth that they are going to end up putting me at because I have to build up to it and it was my first dive, but I went to a nice depth. It took about 10 minutes to get to the depth that was needed and then I spent quite some time at that level. The people were really amazing there and they went really slow to make sure that I understood everything thoroughly and I wasn’t scared. My dad even stayed right by my side throughout the entire process.
The hyperbaric chamber was definitely an experience. I could have watched TV while I was under, but I was so uncomfortable from the surgery and all the complications that I honestly really didn’t care to do anything. Maybe in a future appointment though I will want to do watch, but this time I was just too weak to do any of it. The people there took such great care of me because they made it so that I was so comfortable. Even though it was a bit painful when I first went into the dive because I got an extreme ‘rush’ of sensitivity and heat throughout my entire body and such, we definitely saw a difference when I came out of the chamber.
When you are in the chamber, you are pressurized and give 100% oxygen. We really aren’t sure what is going to be happening in the chamber with me because it is considered ‘experimental,’ but we are hoping that it will help because it has proven to be effective in helping so many other conditions. Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized room. In a hyperbaric oxygen therapy room, the air pressure is raised up to three times higher than normal air pressure. Under these conditions, your lungs can gather up to three times more oxygen than would be possible breathing pure oxygen at normal air pressure. Your blood carries this oxygen throughout your body, stimulating the release of substances called growth factors and stem cells, which promote healing. We really did see a difference already because I have severe discoloration in my limbs, especially my left leg. In fact, the doctors are really scared that I am going to end up losing my limbs (especially the left leg) because it is so deprived of oxygen and turns black. When I was in the hyperbaric chamber, the leg actually resumed somewhat normal coloration because I was getting oxygen to the leg since I was undergoing 100% oxygen consumption. It was really amazing to see. If only that would last, but of course when I came out it went back to being black and such. But perhaps after more treatments, the leg might be able to be ‘saved’ because the oxygen can possibly heal and rejuvenate the dying tissue. Perhaps this can save my legs after all.
Anyway… I underwent this hyperbaric oxygen treatment to try to help my disease, as well as to try to combat the complications that I had during surgery. However, I am still continuing to suffer from the complications of the surgery and we spoke to the doctor tonight and he said that I can easily end up back in the hospital because of a stroke. I am suffering from intense headaches, I am unable to really see straight, my spine keeps having spasms, I cannot go to the bathroom, and I keep getting pain in my lower spine when I do try to go to the bathroom. It is horrible. I am getting all that on top of all the other pains and spasms that I am already experiencing. The doctors thought that maybe if I drank some caffeine that it might have helped with this problem.
Due to my diseases and how thin I am, they think that even though they used the tiniest of instruments, they think that they possibly punctured the Dura mater, which is one of the meninges surrounding the spinal cord. As a result, cerebrospinal fluid has leaked out into my epidural space. It is extremely painful especially when I sit upright or anything. I cannot tolerate any noise and my head is ready to explode. I am extremely nauseous too. My body keeps going into spasms and the doctor said that it is all related. He said this problem is causing spasms in my spine, as well as pain. Therefore, every time I go to the bathroom, I get intense pressure, spasms, and pain in my lower spine.
The doctors are extremely worried that something severe is going to happen to me because I am so complicated and I am not a ‘typical’ patient. They are very nervous because I am not in the best condition to withstand anything as it is and to have this complication is not good at all either… especially with the neurological disease an autonomic dysfunction. Any trauma to my body or stress such as this can cause my body to go completely haywire and really cause it to fail. They are really worried that a serious complication such as a stroke is going to happen because of all that is happening and especially since I have this autonomic dysfunction, which means that there really is no control of my system as it is.
To try to help with this problem, the doctors have me on bedrest and want me laying as flat as possible. However, the problem with this is that I suffer aspirations and therefore, laying flat is definitely not food for that. Whenever I lay flat, I end up choking.
In addition, the most important thing that needs to be done to help me is to make sure that I stay hydrated and to drink a lot. However, that is really impossible with me because I have the severe gastroparesis and I don’t absorb anything. Every time I drink, I end up not absorbing and end up vomiting it up. I am so very thirsty, which they think is a result of the complication of this surgery and also of my disease in general, but since I cannot tolerate fluids, it really makes it even harder to combat this complication because I really do need fluids to get better. So the doctors said that if I can’t keep fluids down, I might really need to get to the hospital. Also, the more that I drink, the worse the aspirations are.
Everything the doctors have told me to do to try to help me are not working. Like I said before, I can’t tolerate the fluids that I have to drink. They also want me to drink stuff with caffeine and when I do, it only makes things worse. I am just suffering so much and the doctors are scared of what is happening. The doctors are having me lay flat and I can’t be left alone. They are hoping that between everything, it will improve.
If things continue to worsen or remain the same, the doctor wants me brought immediately to the hospital. They are really worried that I am going to worsen or even have a stroke or something, which is a real possibility. They are talking about having me go for another BIG procedure on Monday entailing going for a blood patch. During this time I will get a blood transfusion. I will then get blood taken out of me and put into my spine to hopefully form a patch where all the cerebral spinal fluid is leaking out of me. Hopefully that will help.
With everything going on, they don’t know if the second surgery is going to be a ‘go’ on Tuesday. There are too many things going on now especially with these complications from this past surgery. We really can’t afford to have more complications in addition to all of these. You know? We really don’t even know if my body is going to be able to tolerate another surgery right now especially in my spine because it isn’t even recovering from the last one yet. They are putting me into another hyperbaric oxygen chamber on Monday in hopes that it will help the disease, the complications from the past surgery, as well as prepare me for the upcoming surgery… so I guess we will have to see where that takes us. As of now… who knows?
So… I guess that is where we stand. I am laying here in bed and in so much pain. They are trying to keep me as hydrated as possible. They are also trying to give me as much of my medicated ice-pops as possible because my bloods are really low in the counts as well, so they are hoping that not only will the ice-pops help maybe ‘perk’ me up, but they are hoping that it will hydrate me and build up my bloods. Even though it is so difficult to get things down, we are hoping that the icepops are the best because of all the meds it has in it and plus it is all frozen and such… so it goes down even slower than a regular drink. You know?
I am a real mess! I am trying to keep a positive attitude, but I am honestly really scared. I don’t know what is going to happen or to expect. I don’t know if I am going to end up in the hospital at any minute because of the complications of this past surgery and as of now it looks like a blood patch is going to be needed on Monday. I don’t even know what is going to happen to the second part of the operation. Like usual… my life is chaotic. But did you honestly expect anything differently? My life is always a big mess! I think if my life ever went smoothly… I’d worry!!
In the meantime, I did receive a package Federal Express from Georgetown. I couldn’t imagine what could be so important that it was sent Federal Express and marked URGENT, but when I opened it was a folder that had all the necessary transplant material that I needed. It was two booklets of all the information that I needed for the transplant and such. I guess it’s a ‘go’ so far and I am on the list. When I spoke to the transplant team today and asked them how it looked for me, they said, “they are very interested in my case and I am on the list so far!” Of course there is a few more tests that can take me off of it though. The thing is with the transplant, it is so dangerous and such that they said “it’s a fine line. You have to be sick enough to warrant this transplant, but not sick enough that you will die and not make it through the operation.” They know that the operation will be by no means ‘easy’ and it will be extremely life-threatening even for the normal individual, but they want there to be ‘some’ chance that I will make it through the operation. You know? They just don’t want to waste organs. After all, I need a new stomach, small and large intestine, pancreas, and liver. I basically need a whole new system.
I just wish I was normal! I can’t wait for the day to say that I am ALL BETTER!! I can’t wait to say that I am back to a normal life. I was robbed of my life by this disease and I dream of the day that I will get to be able to have my life back. I have such a huge bucket list to do. I can’t wait to be that doctor that I so wanted to be since a young girl because I really want to make an everlasting mark in the world and help people. I don’t want others to suffer like I have done. I can’t wait to be able to get married and move on with my life. I can’t wait for the day where the most innocuous touch or even the hug from my parents won’t be painful. I can’t wait for the day when I can eat normally and when I can go to a restaurant to eat. There are so many dreams that I have and I only hope that one day these dreams become reality.
On that note… I guess I am going to get going. I am not feeling well, but like I said… I wanted to write and let you know all that has happened. Everything is “touch and go” right now and what is next… who knows? I will keep you posted though. We will see what happens because I do know how much they want to put the pump in me and they want to do the brain surgery afterwards. However, with this past surgery and complications that have occurred with it… who knows what is going to happen. I just hope I don’t end up having something really serious happen to me like a stroke or that I don’t end back up in the hospital or that I don’t have to go for another huge procedure and having to go for the blood patch and transfusion. Why is it everything that I do never goes smoothly? I guess they should just change the wording of MURPHY’S LAW to MIRSKY’S LAW because whatever can go wrong does go wrong. But like always… I am going to push away all that negative energy and remain positive because positivity goes a long way.
Thanks again for all your encouragement and support. I definitely wouldn’t have been able to make it this far without you. Please continue to pray for me because I need all the support and prayers that I can get.