Just wanted to update you on all that has been happening because since the last time I wrote… a lot has happened. It seems that things have definitely made a complete turnaround and there have definitely been a huge change of plans…especially with the surgery for the removal of my colon. So I wanted to share them with you since so much has happened.
I guess before I tell you about the change of plans, I will tell you what happened today. As always, I went for my usual Friday surgery, which entails going to get suctioned and vacuumed out! I need to have my colon cleaned out because my GI system is essentially paralyzed and dead and as a result, nothing passes through. Therefore, I have so much mucous and stuff inside and I am not only very distended and uncomfortable because I cannot pass this, but it can also cause me further problems because all this stuff is literally “rotting” and “fermenting.” Even though I basically vomit everything I take in, whatever I don’t vomit and even my pills that don’t come back up just end up sitting in my GI system rotting and fermenting until they are removed. The doctors are worried that my colon is going to perforate or rupture, and they are very worried that I will go into sepsis because of “rotting” and fermenting of all that is happening inside. So it is really imperative to have my GI tract cleaned out as much as possible… not to just make me more comfortable, but to also make sure that things are removed. In addition, my colon and intestines are so dilated that they are putting extreme pressure on all my other internal organs including my heart and as a result, it is also shutting them down. So by having my GI system “cleaned out,” it is relieving some of the pressure. I like to call it that I am going for my weekly “housekeeping!”
I really need this treatment because without it I will not be able to pass anything through and I can die. I literally become all distended and look pregnant because of the extreme gastroparesis. In fact, I even had to wait over a week from the last time I had this procedure due to the 4th of July and boy did I feel it. It really made a difference that I had to wait an extra 2 days to have this done. I was so uncomfortable because I felt so blocked up that I was literally counting down the minutes until I had this procedure today.
This has become my way of life! I desperately need to have this treatment because without it I will suffer way beyond belief and it can also kill me by not having it because my intestines will perforate and all that stuff that is just sitting and rotting will kill me. Without this treatment, I will surely eventually go into sepsis and die. However, the doctors are afraid that even though the insurance is covering this treatment to a point now, they are afraid that they are going to stop paying. We all know that the insurance company isn’t going to continually pay every week for me to go for this surgical procedure because it is so expensive. It entails me going under anesthesia, going to the hospital, having a team of doctors, etc…. so it is quite expensive. We don’t know what we are going to do when the insurance officially stops paying. That is why I need to get HELP as soon as possible. I really need to get as many donations as possible so that I can afford the necessary lifesaving treatment that I require such as to have my colon removed so that I won’t have to undergo this procedure anymore. I also need the funds because if the insurance does cut me off, I will need some way of paying for the treatments until I get my colon removed. But of course if I would just have the surgery already to remove my colon, it would really be the answer because not only would it help me, but also I won’t have to worry about the cost of these surgeries that I have every Friday. In the meantime though, I just continue to pray that the insurance company continues to pay as much as they are doing because I desperately need this surgery every week. I am in so much pain and agony as it is… and this surgery really does help. It is also saving my life in the meantime while I wait to have the bigger surgery performed.
What a day though I had when I went for surgery though. By having surgery every Friday, the entire staff knows me there from the receptionists to the nurses to the doctors. I really feel comfortable there because they know how to treat me, as I can’t be treated like a typical patient since I am so hypersensitive and the slightest touch brings about the most painful feeling you can imagine as well as stir up the autonomic dysfunction. I am also a very big surgical risk and they have to be careful with me because I am medically unstable. For example, my blood pressure is extremely low (it is like 70/40), my heart rate is very low (43 beats per minute), etc. So they really have to be careful with me. I also can’t get IVs in the same way a normal patient can get it. I need to have it done right before I get sedated and I cannot have any liquid run through the IV until I am under anesthesia because I can literally feel the most minuscule amount of liquid in my veins and it will feel like shards of glass going through my entire body. The littlest stick of a needle is like someone sticking a knife through me. In addition, I get special accommodations that normal patients don’t usually get, as they allow my dad to come into the OR with me and stay with me until I am officially “knocked out!”
What a time I had though today with this surgery. This time when I was given the propofol to go to sleep it caused me sooooo much pain. It is known to do that and they usually give me lidocaine prior so that the pain isn’t that bad. I call that milky what substance the ‘lethal” stuff because it’s like glass running through your veins and tearing it to shreds.
Anyway, when I was given the propofol this time, it really hurt so badly that I was screaming my head off. I was screaming so much that another doc came into the OR and my doc was like “it’s not me… I didn’t even touch her yet!!” They literally had to close the door because I was making such a ruckus. I was in so much pain that I was screaming so much. I was telling them to cut my damn arm off because it hurt so badly. The doctor was like telling my dad “don’t worry… She’ll be out in a minute!” Well… That minute felt forever. That was the longest minute of my life.
Thank goodness though I had the surgery though today because I couldn’t make it much longer. I was definitely overdue because I wasn’t able to have it last week on my usual Friday due to the holiday and as a result I had to have it 3 days before (Tuesday). I was so bad that now I am suffering with all this air in my intestines and it won’t come out because like I said before, nothing moves through the intestines. I have to literally try to manipulate the air bubble out of me by pushing and such on my abdomen. The doctor tries to take out all the air that he puts in me to blow up my colon, but nothing is 100%. He must have had to blow the colon up a lot because when we saw him after the surgery, he said that it was really ‘bad’ inside and he said that he could definitely see a difference that I was ‘overdue.’ So it wasn’t just that I felt it… there actually was a physical difference.
I gave all the nurses and doctors a great surprise today as I wore my “x-ray” socks. Due to the hypersensitivity, I can’t wear the socks that the hospital usually gives you to wear. In fact, I can only even wear a sock on the right foot because the disease and hypersensitivity is so much worse in the left foot . The only thing that is tolerable to wear on the left foot is a stretched out stockinette. Since I get to wear my own sock, I thought it would be cute to get x-ray socks especially since I am going into the hospital and OR. Well… when the doctors and nurses saw the sock, they loved it!! Too bad I can’t use the other sock. My dad said that I should save the other sock to wear when this sock gets old. But I told my dad that it is literally impossible to wear this sock on the right foot because the bones will be backwards.
Well…here comes the BIG news that I really wanted to share. There has been a BIG change of plans. It turns out that I am now going to be headed to the Cleveland Clinic in Ohio. The surgeon that was supposed to be doing the surgery to remove my colon is backing out of the operation unfortunately. Therefore, it gives us no choice but to go to another surgeon, which will be at the Cleveland Clinic.
After the surgeon was thinking about the case and going through my records in detail, he decided not to do the surgery. Doctors don’t realize how complicated I am or what they are getting themselves into until they physically see me. That is why doctors always say that they will do a surgery or something until they see me. Then there is always a change of heart.
The surgeon that we saw feels that I am too medically complicated for him. He feels that there are better surgeons that are equipped to handle me and as a result, he rather them operate on me. He also feels that he wouldn’t be able to do this operation without putting a bag in me. Even though I would only have the bag for about 6-8 weeks, he thinks that it would really cause me a lot of problems. He said that “This is a rather extreme case and I am afraid that there would be likely problems or issues with the anastomosis.” So he would rather me go to a surgeon who can handle me and do it without living me a permanent or temporary ileostomy.
Even though I was really upset that the doctor backed out, I understood where the doctor was coming from and to tell you the truth… I rather go to a doctor who will definitely be able to do the surgery without having to have the bag at all. After all… even though the bag is only planned to be “temporary,” anything is possible and I don’t want to have it permanent. Even having it for 1 day though would be too much because I really don’t want the bag. So I am glad that I will be going to a doctor that will hopefully be able to do it without having the chance of this occurring.
The surgeon didn’t leave me in the lurch completely though. He did give me some direction, as he told me some names to see. He really wanted me to see a top surgeon in the Cleveland Clinic and therefore, I called over there and we are heading over to the Clinic at the end of the month. So we will see what this surgeon has to say. Hopefully this surgeon will be willing to do it.
I had 2 ways of possibly going. I could either go with having my colon completely removed or I can also have a transplant. However, after speaking to the surgeon, the surgeon said that even though having a colon is ideally better because it does provide a function to your life, it really would be better in my situation to have it just removed instead of having the transplant. He said that the anti-rejection drugs that I would have to take for the rest of my life would have too many downsides and therefore, it would not be a good idea to go that route. After all, the anti-rejection drugs could cause so many problems and even cause me to die because they are so powerful. So it is just better not to open another can of worms and just have the colon removed.
We now have to decide though what to do about California, as it plays a role as to when we will be heading to the Cleveland Clinic. We are supposed to be going back to California for the last test before I was supposed to have the surgery. I was supposed to have an exploratory surgery that entails having a colonic manometry and colonic transit study. During this time there will also be a catheter placement in the cecum.
We are scheduled to go to Cleveland Clinic either July 29th or the following week, August 5th. However, it is all dependent on California because California is scheduled for the 29th and therefore if we end up going there, of course that means that we will have to go to Cleveland on the later date. However, we don’t know what to do and when we asked the doctor’s office in Cleveland what to do, the response was that they can’t give us an answer without first meeting with us. They did say though that “The more information the better we are!” However, I do have a lot of information as my records are so thick with office notes, tests, procedure notes, etc. It is like a textbook in itself. So I don’t know what to do because it is a huge trip to undergo if unneeded. We don’t know if the surgeons are going to need it before proceeding with the operation and we don’t know if possibly it can even be done at Cleveland Clinic, which will also eliminate the need to go to Cali. Not only is it a huge trip and hard on my body because it is across the country, but it is hard financially too. We can barely afford anything as it is. We don’t even know how we are going to afford one of these trips…let alone both. I would hate to not have the test and then be told that it is necessary and have to go back for it. It would only waste time… time we don’t have.
So that appears to be the big news. Just wanted to let you know the big change of plans. I am not feeling well so I am going to try to rest. But before I go, I wanna share something funny! A good friend of mine always comes over my house and always wants ice. Since we never have any ice in the house, guess what he did? He went out and bought us ice trays so that there can be no excuse not to have ice. I think of course he did it more for himself than for us so that he would have ice when he came over, but we are very thankful and appreciative that he did this. I had a feeling that he bought us this when he asked me what my favorite color was and told me that he bought me a “gift!” What a great friend!
Like always I want to thank you all for all your support and encouragement. Please continue to pray and spread the word that donations are much needed and greatly appreciated. No donation is ever too little!