rachel thoughts and research on surgery ... real unknowns

Hi,

I have been doing a lot of processing and the both of you have helped me get this far with….and other members of the Portland va. but primaril……….. have brought me to this point through the grace of god.

I am sitting going through scenarios of surgery and all I have learned about the surgery. The fact is I am not starting over after 2 yrs of therapy but I have amassed enough information to understand as much as any other person what sexual reassignment risks are involved and the possibility I could die from the surgery or mentally crack. Despite all of the risks the benefits out weigh the risk at this point in the process.

I am positioning myself for surgery next year with crowd funding , personal monies and whatever else I can gather up financially. If I can get the ……… that would put me in a position where , if needed, I could take a few months off from work after surgery. The idea of what I hear that women are going back to work within three week or so of surgery I believe this is not rational nor logical. I think many doctors and patients are looking at it from the physical recovery but I am more concerned about the emotional trauma of surgery, learning about your new body, and the psychological recovery time. there is no data what so ever on the time to emotionally recover nor anything in the mental realm of the surgery. There is zero talk of the emotional trauma of the surgery and everything seems to focus on the body’s ability to recover from the physical aspect only.

I am pretty sure that my body can with stand the surgery because of the many trauma’s I have had in my life but psychologically I will be challenged like never  before in my life. One woman told me when she looks between her legs and feels it is like a “phantom  penis.” I thought that would be the case since the loss of hair and the change of my facial structure earlier in the hormone treatment was a shock to my mind so much so I cried often for a while until I began to accept and like the new me. it has always been my perception that there is an image of your face and body etched in your brain over the last few decades and if that is changed abruptly it is a shock to the mind. This time around it is not missing hair or change in my face structure but the inverting the penis into a vagina which you must dilate three times a day for the first 1-2 months.

If you add all of this to the trauma of the surgery which takes 6 months to initial heal and from one blog 2 yrs  for all the nerve endings to reconnect to the surgery it is an extremely radical surgery. Arguable the most racial surgery done to a human being’s body.  The only reliable study on complications I have read is from brazil which states 40 percent have complications but this drops with the experience of the surgeon.  However at best you are talking about 1 out of 3 or 1 out 2 have minor to major complications.  The complications after surgery range from an additional skin graft needed, inflection, vaginal wall collapse, surgeon nicked bladder in surgery so the risk of inflection is greater, and in my case the risk of flaring up my rheumatoid arthritis and fibromyalgia. The later is a concern to me based on risk events in my medical history, fibromyalgia, because once it flares up it in turn flares up my rheumatoid arthritis which increases my joint pain and if not addressed quickly could quickly mover from joint pain to sleep deprivation. 

I talked to my …..doctor , who seems very sharp and know me lol, and she told me that based on studies I will need to come off of my enbrel injections one week before surgery and resume them one week after surgery due to increased infection. She stressed to me that there is large study done that backs up the action of stopping and restarting enbrel for surgeries. So it is my plan to follow her advice unless directed to by dr …….. but I am sure he and I will talk in depth about this issue before surgery.

Now given the fact that I nearly had a panic attack this weekend because of an eye issue which seems to be an infection more than likely brought on by my mascara being over 3 months old I will need someone to come with me to surgery. I cannot see a way around that part of my surgery plan. If I am pressed I will go by myself but I am not comfortable. This issue of a companion is one reason , the only one, that I will wait if she cannot go until a few months later.

How who will to the surgery? That is literally a toss up because of no data is collected on any doctor anywhere in the world where it is published from a reliable source. This information simply does not exist so I will base my decision on the amount of money I have saved by next year. ( my goal of now is February 2015)  The doctor that charges 1625.00 for srs and 625.00 for ab tuck seems my first choice overseas. I need to first find out if university California SF is scheduling surgeries or that is a dead end?  If that is a possible solution I will gather the information and go from there? But stepping back do I want an experienced surgeon from Thailand to do my surgery or? I am crying because I hate navigating this nightmare in the middle of a crisis because it is very hard to look at a situation like this while you are so emotional and will do anything for surgery to possibly ending the emotional pain of , being direct, needing a vagina. 

I am so scared and cry so much because of the unknown factors. There is literally no one to talk to about the surgery.  In my opinion the forums on Facebook have no creditability and the information seems to be out right distortions of the truth , at times, to direct you to the doctor that supposedly performed their surgery while down playing the surgeons. Or in the case of the cheaper doctor I am considering the information on facebook says he is a bad doctor who is taken to court and Thailand tries to revoke his license to practice medicine. The fact is according to a BBC article this doctor is in court as a expert witness in srs cases and he personally has completed 50,000 surgeries. How much is true? But with my research he is the only doctor that does not charge a deposit on surgery and charges the same price for locals and foreigners. To put this in prospective he charges 65,000 baht ( Thailand dollars) compared this counter parts who charge any where from 250,000 baht to 500,000 baht ( 20k). so the pricing is from 2- 20k us dollars. 

According to multiple sources your stay in the hospital is 1-3 days. Usually 3 days possibly longer if there are complications. You spend this time packed in ice then after that period of time you are urged to begin to walk to prevent blood clotting I would assume.  After the 3 days, does not matter in united states or Thailand, you will have to leave the hospital and go to a hotel room to recuperate after surgery. About the 6-7 day the stitches are removed and they recommend you stay for 21 days total time which includes the surgery but the doctors are comfortable with a total of 14 days but recommend 21. From further research the 14 -21 days mostly is because the possibility of blood clotting while traveling by air and there seems to be evidence this is a risk of such an event. So any anticipated cost of surgery must include the expenses of food and lodging for 21 days. For me this would include my companion too.

So provided you make it through surgery without any complications and you heal with out any complications I am very concerned about the psychological recovery time and your state of mind after the surgery and how one recovers from such a surgery? This is the area of concern and that will challenge me and the people around me. I am also concerned about what type of physical therapy would be best after surgery to ensure I don’t overdo too much physical exercise. I am concerned because of my personal habits of pushing my body hard during workouts and to me that is a major concern because if I overdo my exercise too early I could do serious damage to me internally.  So what physical therapy exercise will I do and when is a good time to start running and lift weights again. I will be direct there is nothing available on either issue. I have heard the doctors do not want you to climb stairs for one month. This is a concern for me because in Portland I walk to the train, bus etc and carry a heavy purse at times and go to the grocery store and cart heavy bags. It is very possible I will need to plan for someone to help me shop and get around once I return from Thailand or California. If I go to Thailand and opt for the ab tuck and srs the recover time could be quite lengthy. Wow could there be any more variables in this surgery and challenges?

I am sure I will find a way to tap the resources I need but I will need to have it all in place before I return from surgery.  This is a marine thing I will plan for the worse case scenario so I have all the bases covered so when another hurdle appears we/I  will be able to adjust to the one hurdle at a time. 

The money is important but almost a non issue if you look at the bigger picture because the support and follow up care is the real expense in this group venture. I look at this as a group project because it will take dozens of people to pull this project off. Other’s may opt to do this in secret but the success of that method of approach would be limited. I seem to look back at what I said at …. when I said, “ there are 9 ways this can go wrong.”  I need good and your help because there is no way one person can pull everything together to make this happen.

My view on video taping the experience has changed to a small group or my companion and I making a skype or home made video. This way I am well protected and insulated from others using it to harm me mentally.  I am not sure I could handle an open film that was used in a twisted way to portray something about me that was not true for a company to make money. So I look at this like the speeches in that keeping this mostly within the walls of the va where people can limit the possibility of abuse by others yet help the people who helped me in my darkest hours.

I think of surgery almost every day and I am to point if I die that is ok? Not really but I have no choice at this point to go forward and pursue surgery as hard as I would any other project I have under taken in my life. As always I can tell you I am so terrified and scared that it overloads my mind when I think of srs. I mean someone will slice up one side of my penis and invert it into a vagain. I think it is rational to be scared because of the lack of info and just how radical this surgery is to the human body and mind. I cry , cry and cry and cry some more and yes it is every day. I am having a hard time using my current coping skills to hold it all together. The longer I am on estrogen the more I need surgery but what makes it even more intense is the workouts are intensifying the need for the surgery since it amplifies and increases the estrogen levels in my body. This in turn makes my breast ache more than just the estrogen and at times my head feels like my head is spinning and I become very light headed. This is something I am use to by now but it is getting progressively worse. The whole issue is can I hold on to this increase in effectiveness of estrogen until I have surgery. The answer is I don’t knowwwwwwwwwwwwwwwwwwwww?????