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Medical Risk

Started by Terri-Gene, July 20, 2005, 12:07:45 AM

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Terri-Gene

Today my MD saw me in the hallway and called me into her office.  She told me she had consulted with a new Endo at the Rancho Cordova Clinic to ask about any help she could give as I had requested to have my present low dose raised, despite medical advice from several of the medical specialities Dr's who deal with some of my developing problems in health.

I was told she could no longer in good concience perscribe estrogen to me, let alone raise the dosage and advised I contact Dr. Dea in Redwood City to see if she could find a way to help.  It was Dr. Dea who had first worked with me on this in the beginning of HRT as I could find no other Dr. who felt it would be medically safe or ethical to do so with my problems even then, and had been referred to Dea as she has the most experience working with transsexuals having chronic conditions in this area of Kaiser Medical.

I was confused about this and asked my Dr. why and she said she had seen me with a cigarette in front of the administration building.   She said she had emailed a request about what to do to a new Rancho Cordova Endo/Transsexual specialist and showed me a copy of her request and the reply and gave me copies of them.  Following are copies of the correspondence.

====================================================

Julia ?
To:Jennifer ?
07/15/2005 02:44 PM      cc:
Subject: transgender HRT


I was told that you have an interest and some experience with treating transgender patients.I have been working with a patient, Terri ?, MR# ******** who had been on hi dose HRT and spironolactone for over 1yr when as of last Nov she had a large CVA (probably due to HRT and smoking).  She is recovered and back at work now.  She had an orchiectomy in Spring, and since then I have had her on estrace ? mg/d... with the proviso that she not smoke.  She is smoking and I am reluctant to continue her HRT treatment.  She wants higher dose estrogen tx because she feels she lost a lot of what she had gained (breast development, mood improvement) that she had on hi dose HRT.  She is saving for her vaginal surgery.  Can you help me manage her treatment?  She had been seeing Dr. Robin Dea – a psychiatrist in the Bay area.  Thanks for your help.  Juli


Jennifer ?
To: Julia ?
07/18/2005 07:18 PM       cc:
Subject: RE: transgender HRT

Hi Julia,
Before I start HRT I usually have a long talk about nonsmoking and drug free state.  Especially for Terri, with occurrence of CVA there is a concern for re-occurrence.  HRT at any dose increases the risk for venous thromboembolic disease and arterial cariovasc disease.  Some say changing PO to transdermal will reduce the VTE risk, but it doesn't change the art,card. Issue.
I agree with you.  Terri must be a complete nonsmoker before restarting HRT.  It gets tricky when the issue turns to quality of life.  There's a bit of social and psychological issues with transgender patients, due to long years of oppression, discrimination, etc.... and the patient will bring up ...  "what about my quality of life... I know the risk....it should be my choice"  ...etc.... It is all true.
For me,.... With active disease, I feel I have to say no.  I had to turn down a patient M to F transgender, when I found uncontrolled HTN and PVCs on EKG on the initial visit / exam.  Without active disease, there may be room to compromise.  With smoking, it gets risky.  You would not be wrong in stopping her HRT.  Another option is to have her follow up with Dr. Robin Dea.  I have asked her for advice before, and I let her handle more IFFY cases.  I hope this helps you... Jennifer

======================================

Well, as to the smoking, I quit for several months at the end of last year, totally, but a couple months ago began having an occassional cigarette, lighting it, having a few puffs and then disposing of it. I been doing a couple of packs a week, Its a nervous thing, I don't really need the smoke and I simply didn't think that a couple or few a day or so could really do any harm, docs think differently though, but they didn't want me on estrogen at all anyway, smoke or not.  Kaiser is a highly cautious outfit.

No big deal I guess though, sure, I won't continue to smooth out, but them I'm a butch type relationally anyway, I'm a PMS type anyway and I never expected or wanted to be a femme type, well, lets just say I'd never really cut it being all cute and cuddly anyway, so I guess being taken out of the HRT program isn't a total loss,  Just means I got to button down to get the surgery done quicker so I at least have that to hold my head together.  There goes the weekend BBQ's for the summer, along with going out anywhere to save the extra bucks faster, they just add pounds anyway.  Getting up, going to work and coming home and not going anywhere so as not to spend gasoline unless it was special to go out has been kind of a routine anyway, but I can find more ways to tighten the belt a little.

Terri
[edit](4years)Just an itsy more censoring...[/edit]
  •  

Leigh

Priorities, what are theyTerri?

Do the numbers.

How much in a year can you bank if you quit smoking?
How much in related health costs can you save and bank?

Voice gets better.
Back on HRT.
Surgery is easier on your body because you are healthier.

For the first month you just wanna kick everyones a** but then thats normal for you  ::)


  •  

4years

Blick, lousy news. I'm sorry Terri.

Hang in there Terri!

I definitely suggest ditching anything to do with smoking, but then I've never been able to stand it either. Cut out a lot of unnecessary things to be sure, but make sure you keep your moral up and keep happy!

*HUG*
  •  

beth

i'm sorry to hear that Terri. i understand how it can feel impossible to quit when we are struggling with life but quitting may lessen some of the struggles, i say this but i struggle so with eating and my weight and it is only worse during the harder times. i wish you strength Terri.





beth
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Terri-Gene

  "Priorities, what are theyTerri?"

There never have been any but one priorty Leigh, but aside from that, I've gotten lax at times trying to carry some luggage along on the trip.  Things will be easier? now though as I guess all my efforts to keep my woman are just more money and stress down the drain, she is in florida now till end of august and I'll finish cleaning up all financial matters between us and will be out by myself again when she gets back.  Easier for sure, but not very satisfying.  I had hoped, and thought I was making gains.

And I was only spending less then $30 a month on the killer stuff, but then, yes, it can be put to better use.

And yes, Leigh, 4years and beth, no more of the silly things, I really don't need them.  If I had known my doctor would freak out so bad, I wouldn't have been doing it, especially right on the clinic compound in the parking area. 

She's a little into feeling guilty about the hit I took at the end of last year anyway, and it was other doctors who pulled me off after that. Dr. Dea fought to get me back on lowdose after the orchie, and she also fought the insurance side to get them to pay for that for me.   I've seen a lot of the correspondence on that and she really went above and beyond for me.

I had asked my Dr. for a slight increase in premarin, above what Dea had stableised me on just a couple of months before the crash and since I seemed to be going strong at that time she approved it.  I know it made her feel pretty bad when I went down, she had never worked with a transsexual before.  She doesn't want to be responsible if anything happens to me, and I can't fault her for that, shes just watching after my interest.  We had been friends before I asked her to be my personal physician, she has a pretty loaded schedule, but she agreed to do it.  She will always be a valued friend, even if she has to deny me something she can't ethically give.

Sides, After quitting cigs, I got faith in Dea that if there is anything Dea can do without being overridden, she'll do it for me.  100 to 1 says she will at least have me back on lowdose in a month.  She'll bust my chops if she ever even suspects a cigarette again though.  That woman is as tough as they come.

And Beth, don't worry about strength, that I got plenty of, it's just keeping it focused in the right directions and staying in the borders of reality that can be a problem, and I been firming up the grip on that one.  Even been letting my therapyst into things I told him to keep his grubby hands out of in past times, and as he kept trying to tell me, I don't seem to be losing anything by it as I had feared, and I'm reconnecting things that have been seperated for most of my life and starting to better understand a lot that I have only known about in a foggy sort of way and remembering much I was kind of aware of but couldn't see clearly, or didn't want to.....  It's all for the good.

Terri



  •  

Dennis

I'm a smoker, Terri. I quit for surgery, so not smoking at the moment, but I have lots of empathy for you. It's not just that it's a bloody hard habit to quit, but it's also that if you're a long term smoker, it's a part of you (it feels like).

My endo hasn't given me an ultimatum about quitting for hormones, but I'm dreading it. At least quitting for surgery, there is a hope I can smoke again (yeah I know, why not just quit forever seeing as I've stopped). I quit for six years and although it got easier, I still missed them.

Good luck to you on it, Terri. Sounds like you pretty well have the cigs out of your life anyway. Wish I could just take a couple of puffs here and there and not just jump right back into pack a day.

Dennis
  •  

Terri-Gene

Thank you Dennis.  I think you are right about it becoming a part of you.  I started smoking at about 28 years of age when I met my present wife.  She was a smoker and I ended up doing it in self defense.  Before, I was like, "ever kiss an ash tray?"  I thought it was nasty, but I'm adaptive, she wouldn't quit and so I started to equal it out so it wouldn't bother me.  I knew all the stuff about bad for heart and lungs, but I had an athletic heart and lungs like a race horse, Even today, some 25 years later, the doctors will agree to that.  They say my lungs are exceptionally clear, and not a hint of heart or arterial desease.  But then like I said, I don't exactly smoke em.
Its just kind of something that I do that takes a kind of edge off me, something to do instead of just being still.

I never could stand to be still.  One of the biggest complaints about me from close friends is that I will stand instead of sit and end up pacing.  Its an important thing for me to have something to do and occupy myself with at all times.  Cigs are helpful in that.  It gives me a chance to be relatively motionless while still doing something if I got nothing else.  I guess thats why I read so much back before I started smoking.  I'd go through a 1000 page novel in a weekend and have plenty of time to run around.

The having to quit anyway for surgery is a thing which has to be done and so its time to get it out of the way.  I never should have restarted when I quit at the end of last year.  can't explain why I did exactly, I was going through a lot of justification stuff for a long period as I was loosing direction and kept getting fixed on things were basically over and thought I'd never live to see surgery, money or not.  I kind of forgot that nothing is over until the lights go out.  Strange thing for me to do, but a lot of that period was even stranger, nothing was making sense, I was only holding together a short while at a time.

Terri
  •  

Terri-Gene

Hah, got a call from Dea this afternoon about 1:40 pm.  I was driving an 18 ft. box truck at the time loaded with dirty hospital laundry and recycle cardboard.  She started in on me about the importance of being smoke free and did I realize how important that was in my case and I almost ran a red light across a major blvd. beccause I mistook a green turn light for a green straight through.  I stopped just across the crosswalk, checked my mirrors and saw that the nearest car behind me was some distance back and "assumed" it was the nearest one directly behind me and began to back up a little to get my nose out of the cross street.

Turned out there was a small, narrow vehicle behind me and I made contact with her front end before realizing it was behind, out of sight because of the Box Bed.  The driver, a middle age woman told me after we crossed the street and pulled over that she was unable to see the lights because she couldn't see around my truck and had followed me when i pulled through the red light and had stopped when I did, but couldn't back up fast enough when I began backing up.

There was no real damage, the trucks box had passed over her hood and an I beam on the frame of the truck had made contact with her licence plate, denting it some but no body damage to her car.  Of course a city patrolman came by and took an anccident report, making me late for my next stop on the route.  I had to notify my department coordinator and give him the report # for reference.  All he said about it sence there was no real damage was "don't worry about it".

No tickets were issued and while waiting for the officer to do his report, the woman and I discussed the heat of the day, over a hundred, our jobs and the luck involved in not having any damage or injuries.   Just a minor incident.

Dea told me to call her in the morning as she had things to get done.  I'm not sure yet what she will do about the smoking or how long she will want me clean before starting me back on if she does, or if she will require testing of me on a regular basis after putting me back on, if she does, All I know, is regardless of back on or off, I am done with cigs as the warnings are clear and if put back on and ever get suspected of smoking them again, I'll never see estrogen again.  Dea is not one to mess with concerning such things.  She is already a little pissed I could tell, that I had started again and she doesn't care about how little or how much.

If I don't get back on though, I can live with it, as like I said before, it will simply mean I'll be a little more masculine then I would have been, but no worse then many women I have seen and work with.  Sides, would be my own fault, so place blame where blame is due, nobody else.

Terri
  •  

Cassandra

Terri,

I think you look great, especially if you see yourself as more of a butch female in which case your absolutely devastating. Sorry to learn about your heart problems. I will keep you in my prayers that god will take that infirmaty from you.

Good luck

Cassie
  •  

Terri-Gene

Butch or femme doesn't really matter Cassandra,  I'd be lieing if I said I'm totally immunine to appearance issues, but they really arn't all that important to the whole picture, and that is the truth.  I'll either get to restart HRT or I won't, either way it does not stop or affect the need to go on or change anything in that respect.  The important thing is to keep things in perspective and go on with what is truely important.

Terri

  •  

Terri-Gene

  "Sorry to learn about your heart problems"

Nothing at all medically wrong with my heart Cassandra, it's what they call an evolving hemorrage condition in my skull, all ready have a  hole, or space, in the middle of my right brain, but they keep telling me that dispite this I don't have significant nuerological damage as of yet and seem to have stabalized at least for now, internal bleeding has stopped for now.  Thats the issue with HRT and smoking, Blood is pooling in my brain and estrogen and smoking both tend to thicken blood, making the pools clot rather then just absorb back.  The clots cause pressure, like a tumor and affect the nerve centers of the brain, altering my whole perception of the world about me.  After the intial hit, I couldn't walk or talk straight or use my left hand for more then a club for some time.  It gets a little strange sometimes, or was, things returning normal for a while now. 

after almost a year of this now, they still have no idea of why it is happening, what it is exactly or what to do about it other then prevention measures, so they pin the blame on estrogen and tobbacco and keep doing CT's, MRI's, and even some newer technology scans to watch blood flow and check viens, so far they don't know zip to do about it and I just lay down at night not knowing if I'm gonna be able to get up in the morning, or if i'm gonna see the morning.

At first I was one scared puppy, it was the first time in my life I had encountered something I couldn't influence or control, I was helpless to do anything.  With help, I worked past the fear and focused on getting my parts to move correctly again and I recovered, The condition, whatever it is, has remained and there has been recurrence of internal bleeding in the brain and docs are saying I should count on another hard strike, likely much worse then the first one. 

All they can tell me is that it is something simular to a stroke, or the after effects of one, but they can find nothing of where it originated from or any reason for one to occur.  No blood clots associated with estrogen or smoking have ever been found other then the one in my brain, but different doctors have different opinions on this. As for me,  I just want em to hold it together for another year, thats all I ask, just one..... more .... year ..... then they can cut it out and study it up close.

Good news, I talked to Dea this morning and she is going to get me back on low dose and says that that dosage should be just about enough, with the orchie to put me back into developmental stage.  She is going to see how much minimum above that dose it will take and see about getting on just exactly what it takes and no more in order to make things easier on me.  Just depends on not having any adverse reactions, Goddess, I hope not.  From here, it is just a little time and money, just give me the time.

Terri
  •  

Cassandra

Consider prayers adjusted accordingly. Good to here Dr. Dea is letting you back on estrogen, I know you've been working hard to convince them you can handle it. Good Luck.

Cassie
  •  

beth

Terri,

           you are the bravest, strongest and most determined woman i have known. i have faith that you will win this struggle. i know you will. stay strong.







beth
  •  

Terri-Gene

Thanks Cassy, beth. But don't read anything into this beth, sure, I have a history of determination and working for what I want, but since this started I have learned that I am mortal like everyone else and I have learned fear in a way I had never before recognized.  In older times I was never afraid of anything, there just wasn't anything to lose.  Life had little meaning.Back then, it was never courage, just who gives a damn?

More recently lits somewhat different.  I'm beginning to understand much of what I had lost in myself and learn to love again.  In a way that is real to me, not just words.  I probably won't have it long now but it all means something to me again and I so don't want to lose it now, and because of some of the things I've done I must face these days mostly alone, and yes, I'm afraid, so deathly afraid, but it is of my own making and no choice but to continue on, step at a time for as far as I can get.  It's not being brave, or stong or even determined beth, it's simply doing everything I can to experience just one more day at a time to seek atonement and peace within myslef.  It's a time of extream selfishness, of breaking words to many to clear the way for the final effort despite the pain of others.  A time of the deepest introspection and spiritual cleansing, and mostly regrette, for not measuring up to my potentual.  Thats the hardest part, to have failed not only others, but myself,  I simply can't let it go like that, so I'll last one more day at a time until I've resolved it, God forgiving and willing.  I'll go in peace then, because I'll be able to, and hope I'll ge granted more, but I can only have what I'm given as I've taken all to much.

Terri
  •  

Terri-Gene

Well, looks like they are going to pull for me one more time.  I made the commitment to trash the cigarettes, and my doctor has set up a comprehensive exam for me friday morning.  I had a full spectrum blood test today so the results will be available then.  We're going to see just how much room I still got and push the estrogen up to what it will take, no more, no less so I can continue the physical side of this before surgery.  I feel a lot better now, though I was and am perfectly worked out in myself about the possibility of going to the table somewhat short of what should have been.  The table is all that occupies my mind these days, everything else is just window dressing.  At least the docs are going to try for me, though they think it is a bad idea, and I appreciate the streatch they are making in thier medical ethics, but they are getting a clue, thats what counts.

I pull it through this physical, I sill got a chance of all I would hope for.  thats all I can ask for, a chance, and it will happen like it does.  I can't worry about that, just hope my guides are still paying attention and keeping watch.  It's a long way from over and time to spend the reserve.  All thats left, better or worse.  There's times when a dice throw is all you got and you can either hide and cry or throw em.  Making the toss is the only way you'll ever know, and playing it safe isn't progress.

Over, Under, or through, if you can't just walk around ..... I'm tired of the roller coaster, I've been back and forth from testosterone, female puberty, menopause and over again so much now in the last year, I'm simply tired,  if it wreaks me, consider I'm wreaked anyway, so as an older self would have reasoned out, what's to lose? but everything to gain, don't even tell me the odds, not interested. Other things are more important, finish the electro, finish what HRT can do, learn what piece of mind is, solidify who I am, experience the knife.  thats all life has come down to lately and if I beat the odds, I'll have what I struck out for, for as long as it lasts, and just getting there is enough to go out knowing it was all worth while.

Damn the torpedoes, bring on the nukes .... Woman on after burners coming in home streatch, landing gear down, shaky or not.  I always come down perfect 3 point when I don't go down in flames.  And I can't help it, I am afraid, but more afraid not to.  Another new thing, the unthinkable, do they never end?

Simply getting a chance at this has envolved so many people.  When they advised it was to risky to start HRT in the first place, over Hep C and Liver, it was Kelly who suggested I get together a team of specialist and make them communicate and work it out for me, and I did, and they are, within what they can do.  So glad I listened to Kellys advice that day in these forums, several years ago now. I had become a very bitter bitch, and still am, but not as bad, because at least the ball is rolling, sometimes back and forth, but moving.  Win, lose or draw, the journey has been worth the trip for what it has taught me and reshaped me as a person.  I may even find redemption.

Terri
  •  

4years

Success is in the journey Terri... Hang in there! :icon_hug:
  •  

stephanie_craxford

That's good news Terri-Gene.

It's unfortunate that we only get one body to live this one life, so we have to look after it, especially for us, and I know that you realised this long ago. Take care of you Terri, ditch the cigarettes, :) and keep us posted.

Take care.
Steph
  •  

Maura Hartman

Smoking is a no-brainer to be sure! I quit my two pack a day habit back in 1976. I had brown fingers from Pall Mall straights, foul breath and greasy looking hair. Been clean all these years and finally found that I enjoy those little cigarillos known as 'Swisher Sweets". I feel like a class-A moron being hooked on them after all these years. It's not a very sexy or feminine sight to see this TS chick puffing away on little cigars, we human beings are woefully self destructive! Gotta quit all over again!
  •  

Cassandra

Teri, you have been through the ringer thats for sure, and yet you keep plugging away at achieving your goal come hell or high water. That's commitment, that's determination, and a whole lot of courage. I admire you.

Whenever the road ahead gets a little rough always remember the immortal words of Rosane Rosana Dana "If it's not one thing it's another."  ;D

Cassie
  •  

Terri-Gene

" you keep plugging away at achieving your goal come hell or high water. "

Someone give me any other alternative at all and I'll be glad to check it out... as we all know, there is only one way to do it, so what else to do? 

Haven't done my nails yet this week, to nervous waiting till Friday to see if I'm clear to go back on again, and if there is room to increase to some "kick" around the liver .... Another 6 mo in and it would be almost easy to give it up, even the maintainence dose which is what they are taking away now unless I puke at the sight of cigarettes and remain on post menapausal doses.  You want something to admire, come over and watch me pace the floor at night and bitch till I'm blue in the face and red eyed over it.  If they don't think I can physically stand it, I won't even get maintenance back, anyone been through menapause yet, as a "lifestyle"?  I got no significant source of my own hormones anymore, I need that crap, development or no development and no, I won't take testosterone suppliments which may or may not be safer as a hormone source.

One thing or another?  Hell ..... Life is nothing but a yard full of trains waiting for their turn at ya.

Terri
  •