I know that I just recently wrote the other day, but I just wanted to write a brief update because I got news that I want to share.
I went to a new doctor today and although the doctor is unsure if he can help me or not, he did give me some pertinent information that was worthwhile. Before I tell you about the worthwhile info, please let me tell you that I really liked this doctor. He was a very good doctor even though he doesn’t know if he can really ‘help’ me any more than any other doctor in this area. When he saw all my records though and especially my x-rays, he literally freaked out. He couldn’t believe all that was happening to me and he couldn’t believe that I was so filled up with ‘air.’
The doctor was astonished that my abdomen could be so filled up with air and there is no wonder according to him why my organs are shutting down. The pressure being exerting by the air is tremendous, especially since I am so small. He was shocked that not only was my ‘stomach’ filled with air, but the air also continued to blow up my colon and throughout the remaining parts of my body. It was a major problem… a problem he would never expect was possible. He said I needed help desperately and quick. He also said I needed to see the top doctors in the field.
Well, guess what? I am going to a new hospital in the meantime. It appears I will be heading to the MAYO CLINIC in Rochester, Minnesota. For all that are unfamiliar with the MAYO CLINIC, this hospital is one of the best in the country and this hospital only accepts patients who are suffering from the rarest diseases and patients who cannot receive treatment at other places. If they feel that a patient can be helped in another location, they will not see you. So, in essence, they only accept the ‘sickest of the sick.’ The waiting list o get into this hospital is also really long. However, I was able to get an appointment for May and for that to happen, things really have to be really bad.
Like I said, I have an appointment in May. Although I was supposed to be going to California at that time to have the surgery and tubes placed in me, I am going to have to postpone that trip so that I can go to the MAYO CLINIC instead. I am going to have to postpone the California trip to the end of June (we will be leaving June 30th), but hopefully we won’t even need to go because hopefully I will get the answers and help that I need at the MAYO CLINIC when I go there in May. We are scheduled to be going on May 27th.
I am really excited to be going to the MAYO CLINIC because I am really hopeful that they might have something that can help me. They treat the most difficult cases in the world and people all over the world come to them when they can’t get anywhere at other places. In addition, even though I have failed all other treatments, I found out that they are doing a study at the clinic that perhaps can benefit me. The study deals with Clinical trial to test efficacy of IV hemin for gastroparesis.
I am really hoping that the doctors in the MAYO CLINIC will be able to help me because I am basically really deteriorating fast and I am really running out of time quickly. I don’t really have a lot of options to get me well besides the very highly dangerous and radical multiorgan visceral transplant, which the doctors are very hesitant to do and which hasn’t really proven to be successful in the long run. It is really risky in fact, as it runs the highest risk of death and rejection of all transplants… especially in the state that I am (how I am so weak, I probably would never survive the transplant). Yet, I really don’t have any other options.
Yet, doctors at the MAYO CLINIC have started this clinical trial that I am really hoping can benefit me. It is the only place that is actually working on something that can ‘help’ save my life. But gastroenterologist Gianrico Farrugia, M.D., stresses that in the last few years, scientists at Mayo Clinic and elsewhere have made marked progress in understanding the pathological mechanisms underlying the disorder. He acknowledges that the treatments that there are for the disorder are not ‘ideal’ and therefore, he has started this trial as a way of finding a way to overcome this disease. Much of the current research focuses on the interstitial cells of Cajal (ICC), which are needed for normal stomach emptying. According to him, “The ICC acts as intestinal pacemakers for smooth muscle function. They also amplify neuronal signals, act as mechanosensors and set the smooth muscle membrane potential gradient. Both human and animal models demonstrate loss of these cells gastroparesis.”
In order for the gastrointestinal system to function correctly, there must be a balance between processes that injure ICC and processes that generate and maintain them. Yet, in people like me, there is atrophy in the smooth muscle. Dr. Farrugia says a critical factor is oxidative stress resulting from low levels of heme oxygenase-1 (HO-1), an important protector against oxidative injury. “When the mechanisms that normally counteract oxidative stress are impaired, especially upregulation of heme oxygenase-1, ICC are lost and gastric emptying is delayed. In mouse models, restoring HO-1 prevents and even reverses these cellular changes and restores normal gastric function.”
In addition, the HO-1 expression that occurs in a particular subset of macrophages — CD206-positive M2 macrophages — whose cytoprotective effect on ICC appears related to the production of small amounts of carbon monoxide occurs in the stomach wall. Dr. Farrugia says, “When the upregulation of HO-1 is lost, M2 macrophages are replaced by proinflammatory M1 macrophages. These cells, which do not produce carbon monoxide, are associated with ICC damage and the development of delayed stomach emptying. Thus, the upregulation of HO-1 in M2 macrophages seems critical to the prevention of gastroparesis.”
As a result, Dr. Farrugia is doing a study to determine whether intravenous hemin therapy is equally beneficial for people with gastroparesis. In mouse studies, hemin, a biological product of red blood cells, has been shown to boost the production of HO-1, thereby reducing oxidative stress, allowing repair of the ICC network and normalizing gastric function. If this should work, there can be an effective medication discovered that doesn’t just manage symptoms as prokinetics do, but that actually targets the cause of the disease.”
So I am really hoping that something GOOD will come out of all this. I am really glad that I am going to this hospital because the doctors are supposed to be like doctors not found elsewhere. First, they take a take a “team” approach. Second, I am really hoping that they will be able to help me because Mayo Clinic doctors cover virtually every specialty and subspecialty. Third, Mayo Clinic doctors take the time to listen and thoroughly understand your health issues and concerns and provide you with an unhurried consultation. Appointment times at Mayo Clinic are generally longer than industry standards in order to promote good consultations. With my illness, I need a long appointment because I am so very complicated that it is hard to fit everything into those short appointments that you are normally given. Usually I am always being rushed out the door that I end up forgetting things to tell the doctor. Hopefully this will allow me to get everything out and this way the doctors will be able to help me better.
One of the best things I love about going to this hospital is that you just don’t work with “one” doctor. Instead, you work with an entire department and then that department works with every other department in the hospital. In this way you aren’t just one person left alone in a whole big hospital, and you are in a whole web of a great support team that can help you. Mayo Clinic doctors ask one another for advice. They collaborate as team members. At Mayo Clinic, you don’t get just one opinion, but you get multiple opinions — from doctors in multiple specialties if necessary. This results in better care and better answers for you. As the Mayo Clinic doctors are engaged in research, it is very likely that someone on my team will be involved in research related to my condition.
So… dad and I are headed to the Midwest to Minnesota to check this hospital out. Two things possibly can stop us from going to Minnesota though: money and the fact that they want me to stop all narcotics that I am on.
The doctors want me to stop all my narcotics that I am on for 2 weeks prior. I can understand the reason for them wanting this because it plays a role on the GI system and they want to see as accurate a picture of my GI system as possible without any medications that ‘slow’ the GI system even more, but it is literally impossible to stop my medications for even a day. I have been on my medications for such a long amount of time (like 10 years) and the amount of meds that I am on are very high. If I stop them abruptly, not only would I be in tremendous pain and definitely not be able to function, but I probably would die. I would die because the pain would be so very intense. I am barely surviving with the pain now and I am on the pain meds now. I am in pain 24/7 and need very high and radical pain relief methods to help me out as much as possible. I am on so many medications such as Morphine, Methadone, Nucynta ER, etc. that it will literally be impossible to come off of everything and be able to live with the pain that I have since I can barely live with it nowadays. I even now have to undergo ketamine comas to help deal with the pain.
In addition, I cannot come off the medications because since I have been on such a high amount for so long, I probably will go into seizures or even have death because my body has been so used these meds for so long. I cannot just stop these meds abruptly, especially when my body is so hypersensitive and ‘messed up’ the way it is. I would need to be tapered off so carefully that it would take over a year to do… time that I don’t have. We will be talking to doctors to see what can be done to overcome this situation behind the MAYO has a strict policy of being on NO narcotics, but I really don’t know what is going to happen in order to achieve this.
Secondly, of course we will also need funds. Nothing comes free in the world, so I am hoping that I will be able to receive some more donations from people so that I will be able to go to Minnesota. I am rapidly deteriorating and this can be one of my last hopes. I am hoping that people will understand and donate anything that they can because even a simple dollar ($1) makes a difference because it does add up. If it is left up to just my family, I fear that I won’t be able to receive this treatment because we cannot afford it anymore. The bills from this disease have amounted too much from being sick and it just has taken its toll on my family too much. It is beyond the point that we can do anything anymore as much as we would like to. So, as I said, if you can do anything to help me… whether it is to spread the word, think of a way to fundraise, or even say a prayer… it would be much appreciated. Any way you can help would be great and much appreciative.
So that is next on the list. I have been showing my dad the hospital on the website and this hospital is really state-of-the-art. The hospital is simply amazing. I am really fascinated that the whole town is basically built around the hospital. Since it is really cold in Minnesota, there are tunnels that connect the hospital to everything including the hotels, malls, etc. It really is awesome.
In addition, there is even a concierge service. I never went to a hospital that as one of those. But this isn’t just ANY hospital. This hospital is for the ‘sickest’ and therefore, when you go there, people really need to feel like home and they are there for a VERY LONG TIME. The MAYO CLINIC “Concierge” services can assist you with questions related to lodging, transportation, local businesses and attractions. They like to do EVERYTHING for you so that you don’t have to worry about anything. They also understand that you don’t want to be in a hospital setting all the time and therefore, they will bring you to whatever you want to do whether it is to go shopping or anything else. They know you want to do things in your ‘free’ time so they try to make you ‘happy’ by bringing you to things that will suit your interests whether it is recreation, tours, restaurants, casinos, shopping, etc. They even get you hotel arrangements too so you don’t have to do your own research or even can change your itinerary plans like for flight info if there needs to be. This way you don’t have to be burdened with all the little unnecessary things and you can just focus on the ‘important’ things. Whatever the need is, they are willing to do anything for you. They are simply amazing. It is something that I would never expect… especially something at the hospital.
So… this is the next adventure. I really hope that it all works out and I get to go because I need help quickly. I have been in worse pain than ever lately. My toes and feet have been killing me as it feels like constant nonstop hammering are being done to them. You know when you are hammering nails and you accidently miss and end up hitting you finger instead? You know how you get that shrill pain right through your finger and it goes right through your entire body? Well… that is what is happening to me. Even though I don’t have a hammer actually hitting me, it feels like I have one each and every one of my toes on both feet and it is sending the most wretched pain throughout my entire body besides the other pains that I am feeling. It is the most horrendous pain you can imagine. In fact, it is literally sending me through the wall that I am basically begging my dad to “please do something.”
I am in so much pain lately that I am willing to go to the hospital if they would only do something to help alleviate it. However, I don’t even know if it would even do anything, especially since this most horrendous pain is in my toes and sending it through my entire body. For me to actually be contemplating going to the hospital, it has to be bad. In fact, the pain is so horrendous that I even told my dad that I wish I could amputate my toes because I can’t take that hammering feeling and that shrill that is starting there and going throughout my body. It is killing me. I don’t know if that is playing a role, but I have been weaker than usual. My dad has to literally carry me throughout the house because I have been so incredibly weak.
Hopefully the ketamine coma will make a difference. However, the next one that I have is not until this coming Friday, April 5th. It seems so far away, I just hope I can last that long.
In the meantime, I have been helping my dad to hopefully bring in more customers to his business. After all, more customers not only mean more business for him, but it also means more money to help pay the bills. It also makes me feel productive. Therefore, I have
made him up new business cards and magnets to give out to customers, as well as I customized folders for him to handout to new and potential clients filled with literature of all the different pest problems that we take care of. I am trying to get as much business and customers as possible and therefore, I have been telling everyone about my dad’s company and giving everyone magnets and folders so that they will always know where to come when they have a pest, rodent, or termite problem.
After all, out of sight… out of mind and with this magnet and business card, they will always have my dad at hand to remind them of his company so that they can call him. I have been so into it that not only have I created all this stuff (magnets, business cards, literature, website, etc.), but I even handed it out to everyone including doctors. Hey… every person is a potential client because pests don’t discriminate. Many people think that pests, rodents, and termites are only attracted to lower class, unsanitary or messy homes. However, this is simply not the case. In fact, they do not discriminate and will infest any home from the most expensive mansion to a run down shack. Anyone can get bugs, rodents, and termites. They do not care what race you are, your age, or your economic status. So they need a top pest control company with great reputation like my dad’s company (Inter County Pest Control, Inc.) to treat the problem.
Well… I guess I will be going. I just wanted to let you know the updated news. Please keep your fingers crossed that I will make it, help will be in the near future, and I will receive the necessary funds that are needed to receive the lifesaving treatment that I require as well as for the trip to Minnesota. Like I said before, if you can please spread the word that I need support and funds, I would really appreciate it because like I said, my treatment and trip to MAYO are dependent on it. People can donate at www.FallonMirsky.wordpress.com.