Connie's surgery :-)

[Guest guest]

Hi Everyone :-)

I thought it was time I checked in......first, though, thank you all for your good thoughts and prayers. I could really feel them wrapped around me like a warm loving blanket. Heidi, a special "thank you" for sending the adorable teddy bear from the entire RP group. You guys are incredible!

With the help of many (including the info I've learned from this group), my surgery went well, and I'm getting better every day. I think my ob/gyn new that I was not going to be "just another hysterectomy" by thestack of questions, articles and info that I brought to my appointment LOLI never miss an opportunity to let these guys know about my antibiotic treatment for my connective tissue diseases.....you just never know where it might lead. Several years ago, I was like many people who obediently follow doctors orders without doing research or asking questions. Because of our group here and that of my rheumatic friends on the antibiotic protocol, you have played a big part in my transformation from a passive consumer to a more active participant in my own health issues.

There were two things that worried me, however. Because of the ~cough~ and trachea/larynx involvement, I had been advised by others with RP (and also articles by Drs. Trentham and Herman), to opt for a local anesthetic instead of the general, if possible. With general anesthetics they have tointubate people during the surgery and the tube can be problematic due to irritation of an already compromised area of the body. There is also mention in Trentham and Herman's articles that the disease might also be spread further down the trachea with intubation. Since my treatment involves antibiotics as the mainstay, I wonder if I might have been protected against this problem.......probably Dr. Trentham would be the one to ask since he is one of the few RP experts who sometimes uses the antibiotic treatment.

So, during my consult with the anesthesiologist a few days before surgery, he agreed to use a spinal block along with tranquilizers so I really wouldn't be aware of the surgery......so far, so good. Then I told him that I was afraid that I might cough during the surgery. He didn't seem too worried.....but somehow, I got the sense that he didn't really realize that when I say I cough......I mean I cough! The morning after my surgery, he stopped by my hospital room and confessed that he really hadn't believed that I had a cough. hmmmm.The other thing that worried me was the fact that I knew a lady here in town with scleroderma who had gone in for surgery and came out with her arm having to be amputated, apparently because during surgery they tied her arm down in a bad angle that cut off her blood supply to her arm and shoulder and of course, she was asleep and couldn't tell them that it was uncomfortable. Knowing the joint involvement and similarities common in all of our diseases, I worried that the same thing might happen to me.Fortunately, I was very much awake and alert as they wheeled me into the surgery room. They gave me the spinal block and proceeded to tie my arms down....so I wouldn't "help" with the surgery :-). At that moment, I yelled "owwww!!" and the anesthesiologist immediately changed the angle of the arm rests to be just a little closer to my sides, not quite so straight out. I told him that people with Dermatomyositis (my other connective tissue disease) often have shoulders that don't like certain angles and I heard my ob/gyn agree(which let me know that he had probably researched and read some of the info I had given him :-) I shudder to think what might have happened if I had not been awake when they tied my arms down.Next.....the surgery. I coughed.......big time. Apparently I went into a broncospasm that left them no other alternative than to knock me completely out, intubate me and switch to a general anesthesia. At that point, the ob/gyn had to call in an ENT who was at his home10 miles away, just in case I might need atracheotomy when the tube was removed. So I guess I had quite an audience at my surgery party. The good thing is that the surgery was very successful and necessary. The doctor did have to remove one ovaryas it had a rather large cyst, but due to my wishes, he left the other ovary. I also had endometriosis, which was removed, and also the various remaining organs were resupported which already is better.My remaining worry was that I would cough after the surgery and that it would hurt like the dickens! (Prior to surgery, my cough was down to approx. 4 times per day...much improved over the 100's of times per dayprior to the antibiotic protocol, sometimes called AP by those of us who use it) With the cartilage destruction of my larynx/trachea, I don't know if a totally cough-free day is possible......only time and the AP will tell. One thing I wasn't expecting is that my ob/gyn routinely gives patients a burst of prednisone following surgery. You guys know that I have tried to avoid prednisone for the past 6 years and had I known, I would have undoubtedly asked him not to give it to me.....but as it happened, the prednisone bought me 4 days of no coughing after surgery. This was the first 4 days in 6 years! I am still taking a high dose of Ibuprofen and that, too, is keeping my cough mostly to a bare minimum. I know I can't continue with the Ibuprofen by itself indefinitely, but these cough-free days have allowed the surgery to heal properly without me coughing it all apart. I still take many supplements, including fish oil recommended by Dr. Franco, and will be concentrating on finding the right mix of herbal/natural anti-inflams.

Oh yeah......during the time that they were waiting for the spinal block to take effect, my ob/gyn told me that he had spoken with my internist and the feeling that I got was....."yes, you have a couple of nasty diseases, but somehow you are doing amazingly well and the (antibiotic) treatment that you somehow discovered is somehow working."....or something like that. I don't think they know what to do with me LOL That's why I go to Dr. Franco for his fine-tuning of my antibiotic treatment.

Liz......happy belated birthday!! I hope you had a wonderful time. You mentioned that your doctors keep track of your CPK or CK levels in your blood test. This is one of the tests they use to measure my muscle deterioration from the dermatomyositis.....and it has been in the normal range for quite some time now, just by following the antibiotic protocol. That was one of the things that impressed my ob/gyn after he had talked to my internist.....again, they don't know why I am doing so well, but they aren't arguing with it :-) Why are they watching your CPK levels? ...because of muscle damage caused by prednisone? I know they can use a variant of that test to measure heart disease or heart attacks, too.

I'd better close for now, or Yahoo will shut me down LOL Just want you to know that I love you all!

Sending hugs,

Connie H