Just finished up at Mayo and got all the results back. Not sure what to do yet, as I am still thinking about the choices. Do I stop transitioning so that I can get infusions sub-cutaneously every 2-3 days for the rest of my life, or do I see how long I can survive with no immune system but continue on as myself? Decisions, decisions. Some days the decisions are easy, this blouse and these pants or that dress; and some days life sticks it to you.
For those interested in medical info, IgA is 0, IgM is 0 and IgG is down to 23, with no IVIG infusions ahead since I have developed an allergy to some compound in them. Good news is no Bruton's disease or HIV or any cancers detected yet, although Rheumatoid arthritis is setting in along with increasing bronhiectasis with it's associated drop in lung capacity (Pulmonary Function Test down to 69% from 74% 2 weeks ago and 87% last month in the hospital).
What should I do? What would anyone else do? Do I let my dream die? or do I let the rest of the CVID slowly kill me and be miserable while it happens?
So many questions and no answers; sometimes life sucks everything and comes back for more...
Driving home in a few minutes so may not catch any answers for a while.
Take care
Diana
Comments
Middle grounds?
Would some compromise be possible? I assume it is HRT that is causing you problems? What if you cut down on doses?
Actually,
The Common Variable Immune Deficiency is something I have had most of my life (41 of my 43 years) and I am having issues separating possible transphobia from medical advice from this doctor since it was more or less "quit the anti-androgens and the hormones because there is a 92% possibility they could cause a TIA" (transient ischemic attack or something, like a mini-stroke). So I I am going to ask my Dr here and see what he says, maybe he knows something. I know there is an increased risk of DVT (deep vein thrombosis or blood clots) with estrogens, but 92%?
Then my mother says "so? just quit the hormones, you shouldn't be taking them anyways." Really supportive there, mom... And my brother the denyer, he suggests it would be a good time to quit and just get a breast augmentation. Real classy there, bro :) Although it does have its merits, maybe get an orchi and BA, then see what the doc says (probably won't be able to, though, due to risk of infection) :P
Anyways, thanks for the input, I will think on it, and take care,
Diana
Orchi
If you can take an orchi without too high risks of complications, i think that would be your best option. Then you wouldn't need any anti-androgens, and the estrogens would be effective in much lower doses. And even if you stopped taking estrogen at all you wouldn't hormonally be much different from a post-menopause female.
In any case, please be careful.
Being a female is more than
Being a female is more than just hormones. I feel for you predicament. I know your HRT helps make you feel complete, but there are many females who don't for many reasons produce estrogens and progesterone.
Go ahead and get a second opinion from a LGBT friendly doctor, but if it is stop hormones or die please choose life. You can still dress and be a female in your heart. I know this is hard on you but it is hard to feel warmth from someone who has passed on.
I wish I could just wave a wand and give you your hearts desire, but this is the real world. I do pray that your health will improve and that at some point you may be able to continue your path. I also pray that your family accepts whatever your decision is and stands by you.
Love,
Paula
Seek freedom and become captive of your desires. Seek discipline and find your liberty.
The Coda
Chapterhouse: Dune
Paula
Seek freedom and become captive of your desires. Seek discipline and find your liberty.
The Coda
Chapterhouse: Dune
hugs and support
from some one who has various problems with thier body and body image i will add a shillings worth. There is the possibility of complications in continuing with the treatment and also there may be an element of transphobia. Not all docs are understanding to the psych make up of hthier patients. Also family can be a little bit blinkered in thier reactions esp if they thin they will loose you. It is most likely your moms reaction because she cant fully understand whats going on in your head.
It is a hard and selfish road we choose to walk because we are doing it for one person ourselves. Talking it through with your primary care physician is the best way as they know how you think and how important things are to you and can help you make informed decisions
to hug is to be and to be is to be hugged
view the world through the eyes of a child and relearn the wonder and love
Allie elle loved and cared for and resident of the kids camp full time
to hug is to be and to be is to be hugged
view the world through the eyes of a child and relearn the wonder and love
Allie elle loved and cared for and resident of the kids camp full time
Parallel paths
OK, well I was diagnosed with an immune system problem back in the early 80's. They gave me allergy shots for two years and I have been much better since.
Skip ahead to 2004 when I started taking hormones. I was stealing them from my X (2 mg Estrodial) a day. I have heard of people taking as much as 18 mg a day. So when I started to transition, in early 2005, they also put me on that testosteron blocker too, but since I was already sure of what I was doing, I just went out and got my gonads removed; no more need for blocker. They wanted to argue with me on the castration, but I was adamant enough about it that they did it. Call me crazy if you want but I was all set to do the deed myself, even if it meant spending 6 months in the mental health slammer in Salem.
Well, about 8 months ago, I finally got to see an endocrinologist. She said that even at 2mg, it was still hard on my internal organs. So, she put me on an estrogen patch (Vivelle .1) She told me that the dosage is about 100th of what I was taking but through the skin, it would not be so hard on my liver and kidneys. Much to my surprise, my breast size doubled in a couple months on the Vivelle. Hmmmmm.
So, that is all I take; having been warned not to take a bunch of other superfeminizing drugs and having had lengthy conversations with more than one Doctor, I am very suspicious that many of the Transgender health problems are due to T folk self prescribing.
Now, I am going to bow out of this conversation. There are those who will disagree with me on this.
Many blessings
Gwen