So, we're still in the intensive care unit. We were supposed to get the chest tubes out and leave ICU on saturday to go to a regular room. It might happen today, but they aren't really sure yet.
Apparently, when the doctor went into her chest, he found a lot more than he bargained for. The main tumor was about 8cm around, and had apparently been growing on her spinal area for many years, and just kicked into overdrive the last few. There is a large vessel that supplies between the arms and is the main source of the left emptying and apparently supplying the right. Over the years, secondary vessels have grown into place because that main vessel was completely inside the tumor. As the tumor grew, it compressed the vessel until she only had a pencil point opening. She never could hold her arms above her head for more than a minute but never gave that a second thought. She had terrible arm pain for the last 2 years (that was diagnosed incorrectly as cubital tunnel syndrome) that was miraculously cured for a few months early this year and again about 3 months ago when she was sick and got antibiotics. It baffled all the doctors involved as to why nerve pain would be affected by antibiotics, since the tumor wasn't near the nerve bunch for the shoulder. But now we know. The teratoma was infected when they took it out. Apparently, when it would get really bad, that tumor would swell around the vessel and clamp it down further. There was no way to safely remove the vessel from the tumor, and because the secondary support was in place, the doctor chose to remove it. As a result, Claire's left arm is terribly swollen (twice normal size) and her hand and fingers were swollen so much that the skin was super stretched, looking at least twice as big as normal. Her right shoulder (the source of all the pain before the surgery when the tumor was infected) has been hurting her pretty badly since the op. This morning, her fingers finally are starting to look normal, but there is still a lot of swelling in her arm. Dr. Smith said she'll probably need some therapy with her left arm.
There was a second tumor in her thymus gland. Apparently it was about the size of an egg. Both were removed and initial results from pathology indicate they are benign.
Because they've had to treat her for an OD of morphine (they discovered she's apparently allergic to it), she's been given a lower acting dug. The morphine caused her to be put back on the respirator once (they thought it was actually sedative related at the time) and then later when they moved her onto morphine from something else, she fell asleep and stopped breathing. They gave her Narcan to counteract the Morphine at that point realized that she can't tolerate the morphine. The pain relief now isn't really isn't touching her pain when she moves, coughs, or takes a deep breath. That is making it excruciating for her to try and do breathing exercises and walk around, so we're way behind schedule on chest tube removal. We're also at really high risk for a bad case of pneumonia still. Once the chest tubes come out, her pain will decrease, but it's a catch 22. Until the pain abates a little, she really is under-functioning right now. They are continuing antibiotics to try to prevent sepsis (from the infected tumor) and pneumonia.
They have her off the saline now, and her blood pressure is somewhat normalized finally, so now we'll have to see how she does trying to eat and drink on her own.
They are being wonderful and letting Kiddo and I stay around the clock in the ICU. I'm sure the fact that we're both trained as first responders helps our case, but it's also critical for panic control for Claire, who is still very afraid to sleep now. As I write this, she's sleeping lightly beside me. They are about to sit her up and see if she can get the tubes out in about 10 minutes.
Annie
Monday, November 10, 2008
Sunday, November 9, 2008
Coming to you live from the ICU...
Claire is responding well to the neosynephrine to raise her blood pressure and is tolerating the demerol nicely. Although she's not getting the amount of pain relief she would with morphine, she is breathing on her own, and she's pretty sure that's a good thing.
They got her out of bed and made her sit up for 45 minutes, and had her breathing using a little machine that measures inhalations. Being the tenacious Brit that she is, she has the staff trained already to try to give ME the jobs that result in her griping. Current count of nurses called mean, sadistic or "just not nice" now up to 4. She's hitting the 500 mark on the breathing machine, and she should be doing 1000-1500 if fully healthy. It's not bad, but she definitely is behind the curve a bit due to the two lost days. She states simply that she's "never really been one for sports, and I'm sure MODERN hospitals have a computer that can do this for me..."
Although the "reclining" chair kept trying to (quite noisily) eat me all night, and they have the room at sub-arctic standards, it helped her a lot knowing she had someone here, and wasn't afraid to try to go to sleep. She did sleep in short spurts, and I think I got a whopping 2 hours of sleep. I did get to smuggle cookies in yesterday evening and hoard them, which turned out to be a good thing at 2am when there was no hospital food to snitch from the unsuspecting patient. In an attempt to not trigger the chair's hunger, I learned just how small of a ball I can curl up in to sleep.
Hopes are high that our superwoman will be able to have her chest tubes removed today. Informed sources state that she should find her pain decreased by 30%-50% once that is accomplished.
They got her out of bed and made her sit up for 45 minutes, and had her breathing using a little machine that measures inhalations. Being the tenacious Brit that she is, she has the staff trained already to try to give ME the jobs that result in her griping. Current count of nurses called mean, sadistic or "just not nice" now up to 4. She's hitting the 500 mark on the breathing machine, and she should be doing 1000-1500 if fully healthy. It's not bad, but she definitely is behind the curve a bit due to the two lost days. She states simply that she's "never really been one for sports, and I'm sure MODERN hospitals have a computer that can do this for me..."
Although the "reclining" chair kept trying to (quite noisily) eat me all night, and they have the room at sub-arctic standards, it helped her a lot knowing she had someone here, and wasn't afraid to try to go to sleep. She did sleep in short spurts, and I think I got a whopping 2 hours of sleep. I did get to smuggle cookies in yesterday evening and hoard them, which turned out to be a good thing at 2am when there was no hospital food to snitch from the unsuspecting patient. In an attempt to not trigger the chair's hunger, I learned just how small of a ball I can curl up in to sleep.
Hopes are high that our superwoman will be able to have her chest tubes removed today. Informed sources state that she should find her pain decreased by 30%-50% once that is accomplished.
2:15 am sunday, update
Hi all, posting from the ICU. Thanks for all the prayers and thoughts. I'm in a calmer place now.
They allowed me to spend the night in the ICU to act as Claire's anti-anxiety med. Kiddo is at home, snuggling with puppies and resting.
Claire was finally given the clear to test demerol in her system at 12:30 this morning. blood pressure is now stable in the 92/45 - 99/49 range, and she is finally getting some sleep. She was terrified to let herself fall asleep because she's now afraid she'll stop breathing. If this doesn't get her over her gigantic medical phobia, I don't know what will. Talk about facing down some serious damn demons.
So, she's been on nothing but Tylenol for about 8 hours, and it was really taking its toll. It also meant that trying to get her to stand and walk has been impossible. The plan is to give her more demerol later his morning and attempt just that.
She has pneumonia starting in both lungs. Not totally unexpected. However, I was told that the teratoma the doc removed was very infected, and she's at very high risk for sepsis. They are treating her with broad spectrum antibiotics to try to counter both. Her shoulder is in terrible pain, where we think the teratoma was interfering with nerves in her arm before. The resection turned out to be a lot worse on her than imagined.
Thank god she went through with it.
Looks like we're probably looking at another full day in the ICU. Claire has had little moments of letting her humor surface, like when she looked at Kiddo today and said "Nope. I don't think I'm escaping on Monday." Not much, but for a girl that is stark raving terrified of the hospital and hasn't had any anti-anxiety meds, I'm pretty pleased.
I've been watching her breathe for 2 hours straight and I'm running out of steam. Going to curl up in a little ball in this chair beside the bed and try to nap.
Thank again everyone. Much love to you.
Annie
They allowed me to spend the night in the ICU to act as Claire's anti-anxiety med. Kiddo is at home, snuggling with puppies and resting.
Claire was finally given the clear to test demerol in her system at 12:30 this morning. blood pressure is now stable in the 92/45 - 99/49 range, and she is finally getting some sleep. She was terrified to let herself fall asleep because she's now afraid she'll stop breathing. If this doesn't get her over her gigantic medical phobia, I don't know what will. Talk about facing down some serious damn demons.
So, she's been on nothing but Tylenol for about 8 hours, and it was really taking its toll. It also meant that trying to get her to stand and walk has been impossible. The plan is to give her more demerol later his morning and attempt just that.
She has pneumonia starting in both lungs. Not totally unexpected. However, I was told that the teratoma the doc removed was very infected, and she's at very high risk for sepsis. They are treating her with broad spectrum antibiotics to try to counter both. Her shoulder is in terrible pain, where we think the teratoma was interfering with nerves in her arm before. The resection turned out to be a lot worse on her than imagined.
Thank god she went through with it.
Looks like we're probably looking at another full day in the ICU. Claire has had little moments of letting her humor surface, like when she looked at Kiddo today and said "Nope. I don't think I'm escaping on Monday." Not much, but for a girl that is stark raving terrified of the hospital and hasn't had any anti-anxiety meds, I'm pretty pleased.
I've been watching her breathe for 2 hours straight and I'm running out of steam. Going to curl up in a little ball in this chair beside the bed and try to nap.
Thank again everyone. Much love to you.
Annie
Saturday, November 8, 2008
Scare of a lifetime
On the way home from hospital to take care of dogs. Kiddo was still at the hospital in waiting room. 8 miles out, phone rings, it's kiddo.
"Mom, you need to get back here."
"Is something wrong?"
"Yes, mum just CODED"
Cue hyperventilation. Cue manic exit off highway and reentry, driving code 3 minus the fire truck. Get back to the hospital, run in the door, up to the 2nd floor, find out that she had apparently OD'd on morphine, because her blood pressure was low and she had an unknown sensitivity to morphine. So she went to sleep and stopped breathing.
They caught her fast, bagged her and brought her back up. My daughter, the paramedic, was distraught. Apparently the priest on duty decided that rather than telling kiddo what actually happened, he decided to tell her that she "coded, and I don't know anything else, so please wait nearby and I'll be back".
Then they take Kiddo back to see that her mum is fine, but kick her right back out of the ICU while they work on her, while Claire gives her a scared "where are you going??" look.
Kiddo loses it. Runs to the bathroom and throws up. Meanwhile, I've been let into the ICU and am with Claire, but I can't get Kiddo back in and can't leave. So Kiddo is out there sobbing until I can break free enough to at least text her from the ICU that mum is ok. For an hour I send her text messages of what's happening until my phone dies. Then I tell the nurse that I have to go take care of the animals and can Kiddo take my place? Of course, they answer. No problem.
So now, with a BP of 81/40 or so, them unable to reintroduce IV painkillers (Claire has every rib cut open with just Tylenol now) they make the call to transfuse to raise her pressure. Apparently, according to Kiddo's message from the ICU, they're giving her packed cells.
I'm on my way back to the hospital, now that dogs have had food, water, and relief.
During the surgery, by the way, apparently they discovered that the tumor had invaded a large vein or the vena cava (I don't have all the details) and that vascular repair had to be done. She may need some rehab to help her arm after this surgery as well.
It's getting a little rough right now. Is it okay to admit I'm scared?
Annie
"Mom, you need to get back here."
"Is something wrong?"
"Yes, mum just CODED"
Cue hyperventilation. Cue manic exit off highway and reentry, driving code 3 minus the fire truck. Get back to the hospital, run in the door, up to the 2nd floor, find out that she had apparently OD'd on morphine, because her blood pressure was low and she had an unknown sensitivity to morphine. So she went to sleep and stopped breathing.
They caught her fast, bagged her and brought her back up. My daughter, the paramedic, was distraught. Apparently the priest on duty decided that rather than telling kiddo what actually happened, he decided to tell her that she "coded, and I don't know anything else, so please wait nearby and I'll be back".
Then they take Kiddo back to see that her mum is fine, but kick her right back out of the ICU while they work on her, while Claire gives her a scared "where are you going??" look.
Kiddo loses it. Runs to the bathroom and throws up. Meanwhile, I've been let into the ICU and am with Claire, but I can't get Kiddo back in and can't leave. So Kiddo is out there sobbing until I can break free enough to at least text her from the ICU that mum is ok. For an hour I send her text messages of what's happening until my phone dies. Then I tell the nurse that I have to go take care of the animals and can Kiddo take my place? Of course, they answer. No problem.
So now, with a BP of 81/40 or so, them unable to reintroduce IV painkillers (Claire has every rib cut open with just Tylenol now) they make the call to transfuse to raise her pressure. Apparently, according to Kiddo's message from the ICU, they're giving her packed cells.
I'm on my way back to the hospital, now that dogs have had food, water, and relief.
During the surgery, by the way, apparently they discovered that the tumor had invaded a large vein or the vena cava (I don't have all the details) and that vascular repair had to be done. She may need some rehab to help her arm after this surgery as well.
It's getting a little rough right now. Is it okay to admit I'm scared?
Annie
The tube is out.
She's off the respirator. However, she's in a LOT of pain, since they made her cough deeply. Her surgeon was just in there checking on her.
More later.
Annie
More later.
Annie
Saturday morning
She's awake this morning, although she obviously can't talk with a breathing tube in. So she was finger spelling to me and kiddo, asking questions. Those big beautiful hazel brown eyes were all the way open a few times, which was a huge relief.
They're taking the tube out in a few minutes, and since it's a HUGE fear factor for her, they're letting kiddo (the combat medic/paramedic) into the ICU to hold her hand and assist. That will be a huge help. Have I mentioned this hospital is wonderful yet?
We said goodbye to Joanna this morning, the wonderful nurse that made sure that Claire was clean shaven today (no makeup allowed, but you know, it's the little things that count). The hospital has little cards that you can fill out for wonderful employees you encounter, and I've filled out two already.
One of the two, a nurse named Kevin, was discussing with Joanna how hard it must be to be this phobic of hospitals when you're trans (and thus eventually needing/wanting final surgery). It was a nice conversation with Joanna, telling her that with a lot of people, surgery just isn't even an option, and that the living full time in the right gender is the most crucial part. It made perfect sense to her.
There have been a few slipups with the he/she pronouns, but that's to be expected when presented with beard shadow and checking on catheters, etc. They usually catch themselves and correct themselves, which is really sweet. They have been all so very kind and respectful here. Even the chaplain, when she came in to see me, used the right pronouns.
Hopefully Claire has turned the corner and will be allowed out of the ICU today. We'd like to get to the point that we can start our shifts, being with her around the clock.
Annie
They're taking the tube out in a few minutes, and since it's a HUGE fear factor for her, they're letting kiddo (the combat medic/paramedic) into the ICU to hold her hand and assist. That will be a huge help. Have I mentioned this hospital is wonderful yet?
We said goodbye to Joanna this morning, the wonderful nurse that made sure that Claire was clean shaven today (no makeup allowed, but you know, it's the little things that count). The hospital has little cards that you can fill out for wonderful employees you encounter, and I've filled out two already.
One of the two, a nurse named Kevin, was discussing with Joanna how hard it must be to be this phobic of hospitals when you're trans (and thus eventually needing/wanting final surgery). It was a nice conversation with Joanna, telling her that with a lot of people, surgery just isn't even an option, and that the living full time in the right gender is the most crucial part. It made perfect sense to her.
There have been a few slipups with the he/she pronouns, but that's to be expected when presented with beard shadow and checking on catheters, etc. They usually catch themselves and correct themselves, which is really sweet. They have been all so very kind and respectful here. Even the chaplain, when she came in to see me, used the right pronouns.
Hopefully Claire has turned the corner and will be allowed out of the ICU today. We'd like to get to the point that we can start our shifts, being with her around the clock.
Annie
Friday, November 7, 2008
Update
Surgery went well, but we ran into a snag in recovery. They had trouble getting her to shake off the anesthesia, and after trying Narcan to drop the pain meds off of her and trying everything else (including using a bag to make her breath) they gave in at 5pm and reintubated her, because her blood oxygen levels were worrying low. They went ahead and sedated her and will keep her sedated until tomorrow morning when they will try again.
On a positive note, as many of you know, Claire wasn't able to finish laser before all of this hit, and of course she's stuck now in a hospital with beard shadow. The night ICU nurse was talking to us and asked if it would make claire more comfortable if she shaved it off tonight to make it less visible tomorrow. How's that for just mind-blowing kindness in a hospital?
Well, I'm off to clean up dishes, exercise dogs and collapse for a few hours. Kiddo is sleeping in the ICU waiting room overnight and they plan to have her in the ICU helping when the take the breathing tube out, since it's one of Claire's biggest fears and she'll HAVE to be awake this time.
Love to you all,
Annie
On a positive note, as many of you know, Claire wasn't able to finish laser before all of this hit, and of course she's stuck now in a hospital with beard shadow. The night ICU nurse was talking to us and asked if it would make claire more comfortable if she shaved it off tonight to make it less visible tomorrow. How's that for just mind-blowing kindness in a hospital?
Well, I'm off to clean up dishes, exercise dogs and collapse for a few hours. Kiddo is sleeping in the ICU waiting room overnight and they plan to have her in the ICU helping when the take the breathing tube out, since it's one of Claire's biggest fears and she'll HAVE to be awake this time.
Love to you all,
Annie
Claire is in surgery
For those of you following, Claire started her surgery to remove that damn 8cm tumor in her chest at at 8:05 eastern. I drove home to let dogs out, and cried the entire 25 minute drive here.
I know why they call it "ripping your heart out" because it felt like a rubber cord was attached to mine, and the further I drove, the deeper the pain was. I'm so terrified. This tumor was discovered in February, and we don't know for sure if its benign or malignant. I'm praying that it will be nothing more than a huge, benign tumor and this will be the end of it.
I'll update when she is out of surgery. Thank you all for supporting her as she led up to this. She had to push through some serious anxiety and panic this morning. As we had to leave her in pre-op, the sound of her heartrate monitor rapidly accelerating when they told us we had to leave about did me in.
**hugs** to you all.
Annie
I know why they call it "ripping your heart out" because it felt like a rubber cord was attached to mine, and the further I drove, the deeper the pain was. I'm so terrified. This tumor was discovered in February, and we don't know for sure if its benign or malignant. I'm praying that it will be nothing more than a huge, benign tumor and this will be the end of it.
I'll update when she is out of surgery. Thank you all for supporting her as she led up to this. She had to push through some serious anxiety and panic this morning. As we had to leave her in pre-op, the sound of her heartrate monitor rapidly accelerating when they told us we had to leave about did me in.
**hugs** to you all.
Annie
Wednesday, November 5, 2008
Elections
Last night we saw Barack Obama elected as President. What an incredible night! There is hope now, with a Democratic majority in house and senate, and with Obama as our leader, that we will finally make inroads into equal rights.
Sadly, Florida and California had to temper excitement with sadness, as hate and discrimination appeared to win over fairness and equality. Why is it so hard for people to allow others to be happy? Why is it allowed that GLBT citizens must be treated unfairly, and penalized, for how they were born?
My sister and brother-in-law are devastated that Obama won. They're calling it the end of the country as they know it. Although they accept Claire for who she is, marriage is for one man, one woman. It boggles my mind that people can be so narrow-minded.
I actually differ a bit from my GLBT friends. They won't rest until gay marriage is legal. I guess I've been exposed to enough of the deep south to know it will never happen, and that we should get civil unions in place. Who you devote your life to in a ceremony should not affect your legal rights. I don't care if Claire and I are united in marriage or civil union, we're together.
Claire enters the hospital on Friday. Because we're legally married, I won't have any trouble with visitation for family. But it just really brings forth the fact that my good friends that are "just" gay or lesbian don't have this same right. And that bothers me. Very deeply.
It's time for change. I hope Obama delivers.
Sadly, Florida and California had to temper excitement with sadness, as hate and discrimination appeared to win over fairness and equality. Why is it so hard for people to allow others to be happy? Why is it allowed that GLBT citizens must be treated unfairly, and penalized, for how they were born?
My sister and brother-in-law are devastated that Obama won. They're calling it the end of the country as they know it. Although they accept Claire for who she is, marriage is for one man, one woman. It boggles my mind that people can be so narrow-minded.
I actually differ a bit from my GLBT friends. They won't rest until gay marriage is legal. I guess I've been exposed to enough of the deep south to know it will never happen, and that we should get civil unions in place. Who you devote your life to in a ceremony should not affect your legal rights. I don't care if Claire and I are united in marriage or civil union, we're together.
Claire enters the hospital on Friday. Because we're legally married, I won't have any trouble with visitation for family. But it just really brings forth the fact that my good friends that are "just" gay or lesbian don't have this same right. And that bothers me. Very deeply.
It's time for change. I hope Obama delivers.
Friday, October 3, 2008
Thursday, October 2, 2008
Asking for community feedback on hospital experiences
If anyone in the TS community has had any experience being a patient at St. Joseph's hospital in Atlanta, would you please contact me?
After a really bad experience (extreme disrespect and bad treatment) at another hospital, we'd kind of like to know what others have experienced at this one before we attempt to schedule a surgery.
Thanks!
Annie
After a really bad experience (extreme disrespect and bad treatment) at another hospital, we'd kind of like to know what others have experienced at this one before we attempt to schedule a surgery.
Thanks!
Annie
Go Trans Community - Support Obama!
The Stonewall Democrats have a campaign going in the transgender community to raise money for Obama. We need to really dig deep and pledge at least $5 if only to show how many of us there are out here. Remember, we need to support the campaign that will support us in our endeavors for human rights for everyone!
This is a beautiful sight! Let's make it grow :) Special thanks to the wonderful Caprice - I missed this campaign until she blogged about it. Thanks!
This is a beautiful sight! Let's make it grow :) Special thanks to the wonderful Caprice - I missed this campaign until she blogged about it. Thanks!
Monday, September 29, 2008
Trans-Blog Day for Obama
From the Stonewall Democrats - help the transgender community step up for Obama!
"On Monday, September 29, we’ll be holding a special coordinated blogging day to harness the power of the transgender community and trans allies to help elect Barack Obama. Check back here for more details!
The transgender community and our allies play a vital role in electing candidates across the country. We need to support Barack Obama based on his strong record of advocacy for the LGBT community; we also need to make sure we measure the impact transgender people and our allies are having on the campaign."
Even if it is just $5, please help. Let's help to elect Obama!
Go HERE to donate on the actblue website. All the money donated goes straight through to the campaign, nobody takes a cut.
"On Monday, September 29, we’ll be holding a special coordinated blogging day to harness the power of the transgender community and trans allies to help elect Barack Obama. Check back here for more details!
The transgender community and our allies play a vital role in electing candidates across the country. We need to support Barack Obama based on his strong record of advocacy for the LGBT community; we also need to make sure we measure the impact transgender people and our allies are having on the campaign."
Even if it is just $5, please help. Let's help to elect Obama!
Go HERE to donate on the actblue website. All the money donated goes straight through to the campaign, nobody takes a cut.
Sunday, September 28, 2008
Dun dun duuun
Looking like try #2 is going to be early November, as soon as we can find which of the 2 remaining hospitals will in fact do as the surgeon recommends.
On the plus side this time I have a new family doctor who is very sweet and is trying to do whatever she can to help get me to the hospital.
We're planning a trip this weekend coming to walk round the hospital, while knowing nothing is going to happen.
*Gulp*
and as if we didn't have enough stress already, we just bought a house! eek
On the plus side this time I have a new family doctor who is very sweet and is trying to do whatever she can to help get me to the hospital.
We're planning a trip this weekend coming to walk round the hospital, while knowing nothing is going to happen.
*Gulp*
and as if we didn't have enough stress already, we just bought a house! eek
Monday, July 14, 2008
Tuesday, July 8, 2008
Non-Surgery - followup
By request of the surgeon (who is extremely dismayed) I have sent him a 3 page letter detailing what happened, and CC'd the CEO of the hospital and the ethics board of the holding company (Tenet). I'll see what they do.
My biggest issue is that they had a patient in severe distress and never, ever checked on her. What if she had fled into an area of the hospital lost, passed out, and hit her head? What if she'd been hit by a car when she bolted across the street in a blind panic? This could have had catastrophic results.
But then again, if this was the level of care given to a patient that the surgeon had specifically requested extra care for, then what would have happened post-op? What if she woke and panicked because she had a chest tube in? Would they have ignored the situation then too?
In addition, since the day of the surgery, I have heard from 3 medical professionals that they avoid that hospital (AMC) like the plague.
One is a firefighter/paramedic that took a patient to the ER that had previously been seen at Grady. The ER at AMC told him they didn't want him because he had been seen at Grady, not AMC. This was a patient transported by ambulance to an ER. He told me that because of that incident and others, they avoid going to AMC at all costs.
The second was someone who took their father to the ER after he had a seizure - when he'd never experienced one before. They did no urine or blood tests, and performed no cat scan. They said he'd had a fainting spell and sent him home. The next day she took him to his regular doctor, who clearly saw he was very ill, diagnosing him with lung cancer, enlarged heart and liver.
Let's just say that I shall let everyone I know to never, ever go to this hospital.
My biggest issue is that they had a patient in severe distress and never, ever checked on her. What if she had fled into an area of the hospital lost, passed out, and hit her head? What if she'd been hit by a car when she bolted across the street in a blind panic? This could have had catastrophic results.
But then again, if this was the level of care given to a patient that the surgeon had specifically requested extra care for, then what would have happened post-op? What if she woke and panicked because she had a chest tube in? Would they have ignored the situation then too?
In addition, since the day of the surgery, I have heard from 3 medical professionals that they avoid that hospital (AMC) like the plague.
One is a firefighter/paramedic that took a patient to the ER that had previously been seen at Grady. The ER at AMC told him they didn't want him because he had been seen at Grady, not AMC. This was a patient transported by ambulance to an ER. He told me that because of that incident and others, they avoid going to AMC at all costs.
The second was someone who took their father to the ER after he had a seizure - when he'd never experienced one before. They did no urine or blood tests, and performed no cat scan. They said he'd had a fainting spell and sent him home. The next day she took him to his regular doctor, who clearly saw he was very ill, diagnosing him with lung cancer, enlarged heart and liver.
Let's just say that I shall let everyone I know to never, ever go to this hospital.
Wednesday, July 2, 2008
The surgery
It didn't happen.
Claire has severe anxiety attacks about medical procedures, requiring a xanex and a couple of days of preparing herself mentally to just get blood drawn.
The surgeon and anesthesiologist both reassured us that she would be treated with consideration (trans) and treated for anxiety - by having a dose of versed waiting for her when she walked in the door. I warned them both that if they made her wait a few minutes sitting around the panic attack would happen.
So... we got there, and Claire has dry heaves and is terrified to leave the parking garage, when an orderly saw us and asked if we needed an assist. I said we did and he helped coax her in. She made it through the ER, to the 7th floor, and to admitting, where the orderly TOLD the nurse there that the patient was in distress and he had to help us in. I informed her that this was the panic attack patient, and we were supposed to have a pill ready for us for her to take immediately so she could calm down before going to pre-op, and one that would be enough to get IV and everything started.
Well, we got attitude. "I'm not HIS nurse". A call to the real nurse, and a summons to follow down the hall, where we passed people sleeping (pre-op prepped) and were put into a PRE-OP room with an IV stand and a bed, had a gown and slippers tossed onto the bed and were told "everything off, gown on".
I stormed out and demanded that someone get the damn pill. I was told that "they didn't have the chart" and "knew nothing about any pill". I warned them that they would blow the surgery if they didn't get the doc on the phone and medicate her asap.
I went back to claire, trying to get her to focus her breathing, but after 2 minutes went back out only to find neither nurse on the phone or getting a chart. I asked what the holdup was and was told to be patient because they were going to have to "walk across the street and get it".
Back and forth 3 more times. On the last time, I went back to the pre op room (room 13 by the way - big ass 13 printed on the wall) only to find Claire *gone*.
I went out and told the nurse that they were too damn late (15 minutes now had passed) and that she was gone. The nurse's response? "who's 'she'?"
I would have punched her had I not been terrified that Claire was lying in shock in some hallway somewhere. I said "Claire, the HIGH ANXIETY patient that I TOLD you we were running out of time on".
"So he's gone?"
Had it. Pissed off beyond belief. Went tearing out of the building, couldn't find her. Told security that a patient having a panic attack was wandering around somewhere. Finally found her outside the ER building, across the street, sitting on a low wall almost catatonic.
Called my mom, who got a cab and came over. A nurse finally came down (30 minutes after the fact) and said that they had the pill ready now, but she had to go back upstairs to take it. Claire was way past responding. We begged and pleaded, but nothing would get her back in there.
So, basically, Claire has been beating herself up all day and crying uncontrollably at her "failure". Our daughter, here on emergency leave from Iraq, is in trouble with her paperwork.
And me? I'm so fucking pissed off at a hospital that we were assured would be prepared for a patient diagnosed with panic disorder. And to add in the anti-trans stuff to boot, really, really pissed me off.
I'm exhausted, had 3 hours of sleep last night, so forgive the rant, please.
Claire has severe anxiety attacks about medical procedures, requiring a xanex and a couple of days of preparing herself mentally to just get blood drawn.
The surgeon and anesthesiologist both reassured us that she would be treated with consideration (trans) and treated for anxiety - by having a dose of versed waiting for her when she walked in the door. I warned them both that if they made her wait a few minutes sitting around the panic attack would happen.
So... we got there, and Claire has dry heaves and is terrified to leave the parking garage, when an orderly saw us and asked if we needed an assist. I said we did and he helped coax her in. She made it through the ER, to the 7th floor, and to admitting, where the orderly TOLD the nurse there that the patient was in distress and he had to help us in. I informed her that this was the panic attack patient, and we were supposed to have a pill ready for us for her to take immediately so she could calm down before going to pre-op, and one that would be enough to get IV and everything started.
Well, we got attitude. "I'm not HIS nurse". A call to the real nurse, and a summons to follow down the hall, where we passed people sleeping (pre-op prepped) and were put into a PRE-OP room with an IV stand and a bed, had a gown and slippers tossed onto the bed and were told "everything off, gown on".
I stormed out and demanded that someone get the damn pill. I was told that "they didn't have the chart" and "knew nothing about any pill". I warned them that they would blow the surgery if they didn't get the doc on the phone and medicate her asap.
I went back to claire, trying to get her to focus her breathing, but after 2 minutes went back out only to find neither nurse on the phone or getting a chart. I asked what the holdup was and was told to be patient because they were going to have to "walk across the street and get it".
Back and forth 3 more times. On the last time, I went back to the pre op room (room 13 by the way - big ass 13 printed on the wall) only to find Claire *gone*.
I went out and told the nurse that they were too damn late (15 minutes now had passed) and that she was gone. The nurse's response? "who's 'she'?"
I would have punched her had I not been terrified that Claire was lying in shock in some hallway somewhere. I said "Claire, the HIGH ANXIETY patient that I TOLD you we were running out of time on".
"So he's gone?"
Had it. Pissed off beyond belief. Went tearing out of the building, couldn't find her. Told security that a patient having a panic attack was wandering around somewhere. Finally found her outside the ER building, across the street, sitting on a low wall almost catatonic.
Called my mom, who got a cab and came over. A nurse finally came down (30 minutes after the fact) and said that they had the pill ready now, but she had to go back upstairs to take it. Claire was way past responding. We begged and pleaded, but nothing would get her back in there.
So, basically, Claire has been beating herself up all day and crying uncontrollably at her "failure". Our daughter, here on emergency leave from Iraq, is in trouble with her paperwork.
And me? I'm so fucking pissed off at a hospital that we were assured would be prepared for a patient diagnosed with panic disorder. And to add in the anti-trans stuff to boot, really, really pissed me off.
I'm exhausted, had 3 hours of sleep last night, so forgive the rant, please.
Tuesday, July 1, 2008
it's here.
I just had the love of my life collapse crying in my arms. This is so incredibly scary even for someone without severe panic attacks, I just can't even imagine how my beloved feels right now.
I think she's incredibly brave, and stronger than she thinks. My mom and daughter are ready to help her recover, and we'll be taking good care of her.
My heart, however, is breaking at the moment.
Thank you everyone, for helping support her. I'll keep you posted tomorrow. Surgery starts at 8:30 (eastern).
Love,
Annie
I think she's incredibly brave, and stronger than she thinks. My mom and daughter are ready to help her recover, and we'll be taking good care of her.
My heart, however, is breaking at the moment.
Thank you everyone, for helping support her. I'll keep you posted tomorrow. Surgery starts at 8:30 (eastern).
Love,
Annie
Saturday, June 28, 2008
Another day down
We had a nice day at the mall and then the farmer's market. Kind of took Claire's mind off things while she and kiddo tortured and harassed me into buying a pair of jeans.
$60!!!!! They couldn't even pick a pair on sale? I never, ever buy anything at retail. To make matters worse, they are Tommy Hilfiger, a brand I *swore* I would never, ever wear. Oh, I feel I just sold my soul to Macy's.
They were merciless. And what's more, kiddo took the receipt so I can't return them!
Luckily, I was able to dodge the Sephora makeover they planned...
Looks like Monday morning Claire not only gets bloodwork done, she also gets an EKG and will meet with the anesthesiologist to discuss what can be done to medicate Claire enough to let her squash her severe anxiety enough to actually get her there.
Not sure what the plan is tomorrow, right now seems like it will be a movie day at home.
Thanks for tuning in.
Annie
$60!!!!! They couldn't even pick a pair on sale? I never, ever buy anything at retail. To make matters worse, they are Tommy Hilfiger, a brand I *swore* I would never, ever wear. Oh, I feel I just sold my soul to Macy's.
They were merciless. And what's more, kiddo took the receipt so I can't return them!
Luckily, I was able to dodge the Sephora makeover they planned...
Looks like Monday morning Claire not only gets bloodwork done, she also gets an EKG and will meet with the anesthesiologist to discuss what can be done to medicate Claire enough to let her squash her severe anxiety enough to actually get her there.
Not sure what the plan is tomorrow, right now seems like it will be a movie day at home.
Thanks for tuning in.
Annie
Friday, June 27, 2008
Counting down...
Just a very brief update as we close in on surgery day.
Kiddo arrived home from Iraq last night. Claire's *really* starting to stress.
I'm getting into the mode of trying to get everything arranged - overseeing mom coming in, changing the car headlight for her, making sure Claire's questions are answered about stuff, getting a futon for kiddo to sleep on... which is strangely calming.
The dog has allergies bad now, so I have to work in a medicated shampoo for him this weekend too. Glad kiddo is here to help.
Annie
Kiddo arrived home from Iraq last night. Claire's *really* starting to stress.
I'm getting into the mode of trying to get everything arranged - overseeing mom coming in, changing the car headlight for her, making sure Claire's questions are answered about stuff, getting a futon for kiddo to sleep on... which is strangely calming.
The dog has allergies bad now, so I have to work in a medicated shampoo for him this weekend too. Glad kiddo is here to help.
Annie
Wednesday, June 25, 2008
July 2nd draws nigh.
Just a quick update.
Things are definitely careening at us pretty quickly now. As I write this, kiddo is in Germany, preparing to fly home. She'll be here tomorrow, for at least 6 weeks. Thanks to the Red Cross and her CO for getting her home for us.
Claire is hanging in there. She's quite calm, in a way, but I think she's drawing on years on suppressing emotions.
As for me, I'm hanging in there. My mom is coming up July 1st, and honestly, I'm glad she'll be here. Fearful thoughts keep trying to invade, but so far I'm keeping them at bay.
Annie
Things are definitely careening at us pretty quickly now. As I write this, kiddo is in Germany, preparing to fly home. She'll be here tomorrow, for at least 6 weeks. Thanks to the Red Cross and her CO for getting her home for us.
Claire is hanging in there. She's quite calm, in a way, but I think she's drawing on years on suppressing emotions.
As for me, I'm hanging in there. My mom is coming up July 1st, and honestly, I'm glad she'll be here. Fearful thoughts keep trying to invade, but so far I'm keeping them at bay.
Annie
Tuesday, May 13, 2008
The Big One... telling the best friend
Claire left her best friend behind in England 8 years ago. They had limited contact back and forth for 5 years or so, and then stopped.
Well, the best friend emailed the other day to see how his old mate was doing in America. He had noticed that some information about 'James' had been taken offline. Wanted to know what was up.
So, we talked and talked, and talked some more instead of sleeping that night. Decided to email him and tell him the story, and she tried to come to terms with the fact that the best friend she loved like a brother wouldn't laugh at her or attack her. It was a very scary thing, because these two were best mates for quite a long time.
With family already excommunicated, he was really her last happy tie to England.
The next day, she sent a long email off basically telling him she is a transwoman. For hours, we waited for a response back from England.
When it finally came, he said it didn't matter to him. He said he'd always thought that she was a bit effeminate, and laughed and said 'who knows, had you been born in the right body we might even be married today'. He then told her he always loved her like a brother, and now he'll love her as his sister.
He went on to say that he's apologizing in advance for screwing up and saying the wrong gender or name. In short, he confirmed that he is an wonderful friend and kind human being. It's only been a couple of days but his stance is that bodies don't matter, just what's inside.
I adore happy endings.
Peace and Love,
Annie
Well, the best friend emailed the other day to see how his old mate was doing in America. He had noticed that some information about 'James' had been taken offline. Wanted to know what was up.
So, we talked and talked, and talked some more instead of sleeping that night. Decided to email him and tell him the story, and she tried to come to terms with the fact that the best friend she loved like a brother wouldn't laugh at her or attack her. It was a very scary thing, because these two were best mates for quite a long time.
With family already excommunicated, he was really her last happy tie to England.
The next day, she sent a long email off basically telling him she is a transwoman. For hours, we waited for a response back from England.
When it finally came, he said it didn't matter to him. He said he'd always thought that she was a bit effeminate, and laughed and said 'who knows, had you been born in the right body we might even be married today'. He then told her he always loved her like a brother, and now he'll love her as his sister.
He went on to say that he's apologizing in advance for screwing up and saying the wrong gender or name. In short, he confirmed that he is an wonderful friend and kind human being. It's only been a couple of days but his stance is that bodies don't matter, just what's inside.
I adore happy endings.
Peace and Love,
Annie
Thursday, April 10, 2008
Of MRIs and Surgeons
We went for Claire's MRI yesterday. We chose MRI because it wouldn't involve contrast, and therefore no needles. Well, after an hour of MRI stuff ( they let me stay in there with her during it) they came in and said they needed a contrast agent. It was just a butterfly needle and although you could see the panic attack trying to happen, Claire fought it off and went with it. I'm so proud of her :)
On a funny note, a young tech asst was setting her up with earplugs and asked the MRI operator if "mom needed to be given a pair too?" The woman looked at the tech and said "That's not her MOM, that's her PARTNER" which made Claire and I bust out giggling. The poor young tech didn't GET it and called me her mom again later. I was glad it happened though, because Claire needed to giggle and relax a bit, and hey, I can take a joke ;)
Yesterday late afternoon the surgeon called and said it isn't vascular, so it's not the aorta. Big sigh of relief. His best guess right now (since this is not a normal presentation of any of the possibilities) is that she has a thymoma, cancer of the thymus gland. Most cases are non-invasive, so kind of classed as a benign issue, since surgery removes it completely. Because of the massive size (my god, the MRI pictures really put it in focus, this bastard takes up 1/3 of
her chest cavity on the right side) it is hard to read if anything else is affected, because it is pushing arteries and a lung out of the way. http://www.lifesteps.com/gm/Atoz/ency/thymoma.jsp
The type of surgery used for open heart will still be needed - split the sternum and open the ribs - and my poor phobic sweetheart is having a rough time. So, although the news isn't perfect, at least we're getting there.
Oh yeah, and the dog had to have emergency surgery Monday night. The dog is now fine and whiny as ever. Just like me. *grin*
Annie
On a funny note, a young tech asst was setting her up with earplugs and asked the MRI operator if "mom needed to be given a pair too?" The woman looked at the tech and said "That's not her MOM, that's her PARTNER" which made Claire and I bust out giggling. The poor young tech didn't GET it and called me her mom again later. I was glad it happened though, because Claire needed to giggle and relax a bit, and hey, I can take a joke ;)
Yesterday late afternoon the surgeon called and said it isn't vascular, so it's not the aorta. Big sigh of relief. His best guess right now (since this is not a normal presentation of any of the possibilities) is that she has a thymoma, cancer of the thymus gland. Most cases are non-invasive, so kind of classed as a benign issue, since surgery removes it completely. Because of the massive size (my god, the MRI pictures really put it in focus, this bastard takes up 1/3 of
her chest cavity on the right side) it is hard to read if anything else is affected, because it is pushing arteries and a lung out of the way. http://www.lifesteps.com/gm
The type of surgery used for open heart will still be needed - split the sternum and open the ribs - and my poor phobic sweetheart is having a rough time. So, although the news isn't perfect, at least we're getting there.
Oh yeah, and the dog had to have emergency surgery Monday night. The dog is now fine and whiny as ever. Just like me. *grin*
Annie
Thursday, April 3, 2008
Update on Claire's situation
I don't know how time flew so fast since my last post.
Claire has been taking Valium at doctor's request to help her break the grip that her anxiety had on her. He was concerned her adrenal system would wear completely down if she kept going the way she was. I agreed, and was glad when 5 days after he prescribed it she finally tried it. She's been on it around the clock (sort of, lighter dose during the day) and it seems to have helped.
I think it's really been the only thing that has kept her in check right now. Even then, there are days when she says things like "I'm just not going to do it" that make me want to scream. The doctor told her to nap during the day when she can and just try to relax a bit. She has been, and it seems to be helping. She doesn't look like hell anymore - the sunken eyes are gone and she's starting to look very healthy again.
Thank goodness she was working on starting up her photography thing instead of trying to hold down a regular job right now, because it is wearing on her tremendously. I know she feels bad sometimes because this phobia has such a hold on her, but the fact is that you can't really control a phobia. I understand this, and so does her doc.
I do wish she would TRY to meditate - but she dismisses it out of hand. She is a die hard pessimist and I am the opposite, and it has been really hard sometimes lately.
Anyway, fast forward to today's appointment.
We went in with questions planned like "how long will she be in the hospital" (5-6 days) and worries in our minds about mistreatment because she's pre-op and hasn't finished full facial hair removal (so she'll have hair growth while she's in there - and she's horrified at the thought). Thoughts of if we should put F or the dreaded M on the admission forms... since they will obviously be able to tell she has outdoor plumbing right now - having not done a remodeling job yet.
(side note: By the way, at least at this point, the hospital has been FANTASTIC about being sensitive to the trans issue. They have her in the system as F and said that anything else is "her personal business" and she will be addressed as Ms. Claire.)
We expected, with the radiologist's report, to have the surgeon say "yup, ok, here's the surgery date" and answer some basic questions.
Ha.
Did I say "ha" yet?
Of course, we got something we didn't expect. He looked at Claire's tall, lanky bod and said "We could have something completely different on our hands."
Apparently Claire fits all the physical body type characteristics of someone with Marfan's Syndrome. He said that he couldn't see a separation between her aorta and the tumor. He also disagreed with the radiologist's determination of teratoma, because teratomas don't normally occur as high as Claire's is, and Claire's tumor is completely rounded (more oval actually) it suggests growth of a liquid nature under pressure. This could be just fluid filled cyst or it could actually be an aortic pseudoaneurysm - something common to people with Marfan's. Obviously, cutting into something to biopsy it that is actually part of the aorta would be fatal, so the surgeon has requested that Claire get an MRI on Wednesday to see if there is blood flow in the tumor.
The tumor (or aneurysm) is the size of a small baking potato, 8cm x 6cm x 4.5cm.
If he can rule out the aortic connection, then Claire can just undergo a biopsy, and decide about full "open the ribs" surgery if needed - or she can skip the biopsy and decide to just have it removed (since it does cause her pain).
So, now we wait. Again.
We'll keep you posted.
Love,
Annie
Claire has been taking Valium at doctor's request to help her break the grip that her anxiety had on her. He was concerned her adrenal system would wear completely down if she kept going the way she was. I agreed, and was glad when 5 days after he prescribed it she finally tried it. She's been on it around the clock (sort of, lighter dose during the day) and it seems to have helped.
I think it's really been the only thing that has kept her in check right now. Even then, there are days when she says things like "I'm just not going to do it" that make me want to scream. The doctor told her to nap during the day when she can and just try to relax a bit. She has been, and it seems to be helping. She doesn't look like hell anymore - the sunken eyes are gone and she's starting to look very healthy again.
Thank goodness she was working on starting up her photography thing instead of trying to hold down a regular job right now, because it is wearing on her tremendously. I know she feels bad sometimes because this phobia has such a hold on her, but the fact is that you can't really control a phobia. I understand this, and so does her doc.
I do wish she would TRY to meditate - but she dismisses it out of hand. She is a die hard pessimist and I am the opposite, and it has been really hard sometimes lately.
Anyway, fast forward to today's appointment.
We went in with questions planned like "how long will she be in the hospital" (5-6 days) and worries in our minds about mistreatment because she's pre-op and hasn't finished full facial hair removal (so she'll have hair growth while she's in there - and she's horrified at the thought). Thoughts of if we should put F or the dreaded M on the admission forms... since they will obviously be able to tell she has outdoor plumbing right now - having not done a remodeling job yet.
(side note: By the way, at least at this point, the hospital has been FANTASTIC about being sensitive to the trans issue. They have her in the system as F and said that anything else is "her personal business" and she will be addressed as Ms. Claire.)
We expected, with the radiologist's report, to have the surgeon say "yup, ok, here's the surgery date" and answer some basic questions.
Ha.
Did I say "ha" yet?
Of course, we got something we didn't expect. He looked at Claire's tall, lanky bod and said "We could have something completely different on our hands."
Apparently Claire fits all the physical body type characteristics of someone with Marfan's Syndrome. He said that he couldn't see a separation between her aorta and the tumor. He also disagreed with the radiologist's determination of teratoma, because teratomas don't normally occur as high as Claire's is, and Claire's tumor is completely rounded (more oval actually) it suggests growth of a liquid nature under pressure. This could be just fluid filled cyst or it could actually be an aortic pseudoaneurysm - something common to people with Marfan's. Obviously, cutting into something to biopsy it that is actually part of the aorta would be fatal, so the surgeon has requested that Claire get an MRI on Wednesday to see if there is blood flow in the tumor.
The tumor (or aneurysm) is the size of a small baking potato, 8cm x 6cm x 4.5cm.
If he can rule out the aortic connection, then Claire can just undergo a biopsy, and decide about full "open the ribs" surgery if needed - or she can skip the biopsy and decide to just have it removed (since it does cause her pain).
So, now we wait. Again.
We'll keep you posted.
Love,
Annie
Wednesday, March 5, 2008
Update on Claire
Just a quick update.
We got the news last night that the mass on Claire's x-ray is not in her lungs.
*deep, deep sigh of relief*
She has what is called a teratoma. About 85-90% of these are benign. However, it has to come out.
Claire has struggled her whole life with severe phobias about doctor related things. It takes xanax and a couple of days to prepare for a blood test, so this is obviously really overwhelming for her. Although I am thrilled at the news that it isn't lung involved, she's way too stressed about the idea of an operation to really feel relief at this point.
I'll keep you posted.
Annie
We got the news last night that the mass on Claire's x-ray is not in her lungs.
*deep, deep sigh of relief*
She has what is called a teratoma. About 85-90% of these are benign. However, it has to come out.
Claire has struggled her whole life with severe phobias about doctor related things. It takes xanax and a couple of days to prepare for a blood test, so this is obviously really overwhelming for her. Although I am thrilled at the news that it isn't lung involved, she's way too stressed about the idea of an operation to really feel relief at this point.
I'll keep you posted.
Annie
Wednesday, February 27, 2008
It snowed.
I woke up to lovely gift this morning. It snowed, and it's enough to leave snow on the ground and the car. Gives the world kind of a calming, peaceful look this morning. I think I needed it.
We're hanging in there. I feel like I'm finally kicking the pneumonia, and getting to a solid, grounded place in which I can support Claire this week.
Primal scream therapy in your car on a deserted stretch of road is amazing.
I talked to my mom, a breast cancer survivor, for 20 minutes Monday night, and she kicked me into fighting and staying strong.
Practicing "walking meditation" is starting to come back under my control. I can't quite get myself to believe my normal mantra learned from Thich Nhat Hahn. I have changed the last line to be "This is the only moment".
Breathing in, I calm my body.
Breathing out, I smile.
Dwelling in the present moment,
I know this is a wonderful moment!
I'd like to thank everyone that has loaded us down with thoughts and prayers. It's making a difference knowing we're not alone as we play this awful waiting game.
Love,
Annie
We're hanging in there. I feel like I'm finally kicking the pneumonia, and getting to a solid, grounded place in which I can support Claire this week.
Primal scream therapy in your car on a deserted stretch of road is amazing.
I talked to my mom, a breast cancer survivor, for 20 minutes Monday night, and she kicked me into fighting and staying strong.
Practicing "walking meditation" is starting to come back under my control. I can't quite get myself to believe my normal mantra learned from Thich Nhat Hahn. I have changed the last line to be "This is the only moment".
Breathing in, I calm my body.
Breathing out, I smile.
Dwelling in the present moment,
I know this is a wonderful moment!
I'd like to thank everyone that has loaded us down with thoughts and prayers. It's making a difference knowing we're not alone as we play this awful waiting game.
Love,
Annie
Friday, February 22, 2008
And the world comes tumbling down.
I worked myself into exhaustion a week ago, while I had the flu. Worked around the clock on a project to the point where I gave myself pneumonia. Now I'm glad I had it.
Yesterday, I took Claire in because she's been sick too. Having bacterial pneumonia, I wanted to make sure they she didn't get it while down with the flu. The doctor took a routine chest x-ray, and my world has been upended since that moment.
See, there was something on the x-ray. Not pneumonia, but a mass in the upper lobe of her right lung. One that looks pretty scary. The doctor sent the film to a radiologist, and called last night to tell us that the radiologist said it looked like a mass that needs an immediate CT scan.
Apparently the shoulder pain that the Savannah orthopedic surgeon dismissed as cubital tunnel syndrome might have been this.
We were supposed to have a CT scan today. However, between Claire being pretty ill with the flu, having the shock of this hit us, and the fact that she would need an iodine injection with a severe anxiety issue about needles made us postpone it.
So, until Friday, we're in the dark. All alone with this specter over our heads.
We've called my folks, and told our best friends. We've both cried, and tried to be brave. The next few days will be really hard, and I know it.
I still have hope in my heart that Friday's CT Scan will leave us walking away breathing a sigh of relief that it was scar tissue, or other anomoly.
All I know right now is that I'm scared, and she's scared. Prayers, good thoughts, etc. are welcome. We'll make it through this; I know we will.
In the meantime, Claire insists that this will be a piece of cake to get through, since she has already survived 36 years stuck in the wrong body.
Annie
Yesterday, I took Claire in because she's been sick too. Having bacterial pneumonia, I wanted to make sure they she didn't get it while down with the flu. The doctor took a routine chest x-ray, and my world has been upended since that moment.
See, there was something on the x-ray. Not pneumonia, but a mass in the upper lobe of her right lung. One that looks pretty scary. The doctor sent the film to a radiologist, and called last night to tell us that the radiologist said it looked like a mass that needs an immediate CT scan.
Apparently the shoulder pain that the Savannah orthopedic surgeon dismissed as cubital tunnel syndrome might have been this.
We were supposed to have a CT scan today. However, between Claire being pretty ill with the flu, having the shock of this hit us, and the fact that she would need an iodine injection with a severe anxiety issue about needles made us postpone it.
So, until Friday, we're in the dark. All alone with this specter over our heads.
We've called my folks, and told our best friends. We've both cried, and tried to be brave. The next few days will be really hard, and I know it.
I still have hope in my heart that Friday's CT Scan will leave us walking away breathing a sigh of relief that it was scar tissue, or other anomoly.
All I know right now is that I'm scared, and she's scared. Prayers, good thoughts, etc. are welcome. We'll make it through this; I know we will.
In the meantime, Claire insists that this will be a piece of cake to get through, since she has already survived 36 years stuck in the wrong body.
Annie
Thursday, February 14, 2008
A Valentine's Card to my Claire
Claire,
This is the first Valentine's Day since you started living full time in your proper gender.
I look back on everything we've gone through and am amazed at so many things.
I am amazed at the depths to which I've seen you plunge into depression, and the highs I've seen you reach now that you are battling all those demons that plagued you all your life.
I am amazed at the openness with which my family received your news, and the embrace they've drawn you into since they learned they had a new daughter instead of a son.
I am amazed at how we've coped, and loved, and adapted, and grown into better people, both of us.
I am amazed at the physical changes brought on by hormone therapy. You're beautiful, and you really certainly don't look like the James I met 7 years ago.
I am amazed at how smooth a transition it was to uproot ourselves and move to Atlanta, and how friendly Atlanta is.
But mostly...
I am amazed at how strong our love is, and how simply overwhelming it is to me. I think of you always, in the back of my mind while I work, play, make jewelry, and even sleep. Random thoughts of you will filter into my head, and I can't suppress the little smile that makes me actually feel my eyes twinkle.
I love you with all my heart and soul. Will you be my Valentine?
Love,
Your Annie.
This is the first Valentine's Day since you started living full time in your proper gender.
I look back on everything we've gone through and am amazed at so many things.
I am amazed at the depths to which I've seen you plunge into depression, and the highs I've seen you reach now that you are battling all those demons that plagued you all your life.
I am amazed at the openness with which my family received your news, and the embrace they've drawn you into since they learned they had a new daughter instead of a son.
I am amazed at how we've coped, and loved, and adapted, and grown into better people, both of us.
I am amazed at the physical changes brought on by hormone therapy. You're beautiful, and you really certainly don't look like the James I met 7 years ago.
I am amazed at how smooth a transition it was to uproot ourselves and move to Atlanta, and how friendly Atlanta is.
But mostly...
I am amazed at how strong our love is, and how simply overwhelming it is to me. I think of you always, in the back of my mind while I work, play, make jewelry, and even sleep. Random thoughts of you will filter into my head, and I can't suppress the little smile that makes me actually feel my eyes twinkle.
I love you with all my heart and soul. Will you be my Valentine?
Love,
Your Annie.
Wednesday, January 16, 2008
It's snowing in Atlanta :)
What a cool couple of weeks. We bought a nice new bed, Claire had her Spiro doubled, and tonight it's snowing.
This poor little gardenia is pretty darn cold.
I played and left a message for Claire while I was out with the puppies. That's a paw print from one of our shepherds to the left of the word Claire. Totally by accident but looked really cool. Shh, don't tell Claire I didn't plan it that way.
Not much else to tell this week. Been really busy - doing another big project at work that will be over Tuesday, and been working on my metalsmithing business. Good stuff, that metalsmithing.
Have a great rest of the week everyone! Oh, and a special shout-out to my buddies Brian and Frances back home. Miss you guys.
Annie
This poor little gardenia is pretty darn cold.
I played and left a message for Claire while I was out with the puppies. That's a paw print from one of our shepherds to the left of the word Claire. Totally by accident but looked really cool. Shh, don't tell Claire I didn't plan it that way.
Not much else to tell this week. Been really busy - doing another big project at work that will be over Tuesday, and been working on my metalsmithing business. Good stuff, that metalsmithing.
Have a great rest of the week everyone! Oh, and a special shout-out to my buddies Brian and Frances back home. Miss you guys.
Annie
Friday, January 4, 2008
Happy New Year!
I love metalworking, really love it. I'm glad Christmas is over though so I can stop rushing to fill orders and can go back to really enjoying my craft. Next year I'll be more prepared.
We spent our first Christmas together this year with Claire being really and truly Claire. No half the day as James, half the day as Claire. I can't tell you how nice it is that we don't have to do that anymore.
Keeping up the sham of having her pretend to be someone we both know she's not was rough. It's really nice now to just *be*.
I do miss the mornings and afternoons together sometimes though, since we used to carpool. However, now I get to come home and have a hot cup of tea waiting for me and dinner on the stove, doggies already fed and nothing to do but relax. I think our arrangement is working out great right now. It's good for Claire right now as she deals with self-esteem and anxiety issues, and it's been pretty good for me stress wise. The time we do have together now is really wonderful.
The other morning I ran into a table corner--train wreck with two german shepherds rushing through a narrow area--and I got a pretty rough contusion on my leg that hurt like hell all day at work. It left a goose egg on my thigh big enough for coworkers to see through slacks. I was hurting, and was really exhausted coming home from work. I called Claire from the train station, like I always do, to let her know I was on the way home. I offered to stop at the store if she needed anything, and I felt like I needed to because we were out of a couple of things. She insisted I come straight home. Imagine my surprise when I walked in only to be led straight to a bathroom with a hot bubble bath, a snack and a bottle of water waiting for me.
I know that most people going through transition don't have the luxury of taking time off, and some probably don't really need it, but Claire was really emotionally dead for years. Think walking dead and you pretty much sum "James" up. I think it's been a good trade-off moving and doing this the way we did. I know she's not very comfortable in Atlanta and really didn't want to move to a big city, but it does give me the chance to give her the gift of taking at least a year off while she goes through the rough spots. The difference in the last 6 months has been amazing.
I have to stop and think about how wonderful my family has been to Claire. The love and acceptance they've shown her I'm sure doesn't completely replace her entire biological family, but I know it means the world to her. We're really blessed to have them in our lives.
Christmas Eve was the seventh anniversary of our first kiss. I'm far happier than I ever thought I would be right now. I think had Claire not finally broken down and told me what was so very wrong in her life, we'd probably be divorced or she'd be dead. Although I loved "James" it was getting to the point where the depression was so incredibly severe it was seriously interfering with living.
I came home from work on Monday, opened the door to see my tall, willowy blonde with a sparkle in her eyes and a smile on her lips, and my breath actually caught.
I'm a lucky girl. My soulmate's still with me, and she's finally alive. Happy New Year. Life is good :)
Annie
PS - as I just finished this up, the song "My Girl" came on. Pretty funny, huh?
We spent our first Christmas together this year with Claire being really and truly Claire. No half the day as James, half the day as Claire. I can't tell you how nice it is that we don't have to do that anymore.
Keeping up the sham of having her pretend to be someone we both know she's not was rough. It's really nice now to just *be*.
I do miss the mornings and afternoons together sometimes though, since we used to carpool. However, now I get to come home and have a hot cup of tea waiting for me and dinner on the stove, doggies already fed and nothing to do but relax. I think our arrangement is working out great right now. It's good for Claire right now as she deals with self-esteem and anxiety issues, and it's been pretty good for me stress wise. The time we do have together now is really wonderful.
The other morning I ran into a table corner--train wreck with two german shepherds rushing through a narrow area--and I got a pretty rough contusion on my leg that hurt like hell all day at work. It left a goose egg on my thigh big enough for coworkers to see through slacks. I was hurting, and was really exhausted coming home from work. I called Claire from the train station, like I always do, to let her know I was on the way home. I offered to stop at the store if she needed anything, and I felt like I needed to because we were out of a couple of things. She insisted I come straight home. Imagine my surprise when I walked in only to be led straight to a bathroom with a hot bubble bath, a snack and a bottle of water waiting for me.
I know that most people going through transition don't have the luxury of taking time off, and some probably don't really need it, but Claire was really emotionally dead for years. Think walking dead and you pretty much sum "James" up. I think it's been a good trade-off moving and doing this the way we did. I know she's not very comfortable in Atlanta and really didn't want to move to a big city, but it does give me the chance to give her the gift of taking at least a year off while she goes through the rough spots. The difference in the last 6 months has been amazing.
I have to stop and think about how wonderful my family has been to Claire. The love and acceptance they've shown her I'm sure doesn't completely replace her entire biological family, but I know it means the world to her. We're really blessed to have them in our lives.
Christmas Eve was the seventh anniversary of our first kiss. I'm far happier than I ever thought I would be right now. I think had Claire not finally broken down and told me what was so very wrong in her life, we'd probably be divorced or she'd be dead. Although I loved "James" it was getting to the point where the depression was so incredibly severe it was seriously interfering with living.
I came home from work on Monday, opened the door to see my tall, willowy blonde with a sparkle in her eyes and a smile on her lips, and my breath actually caught.
I'm a lucky girl. My soulmate's still with me, and she's finally alive. Happy New Year. Life is good :)
Annie
PS - as I just finished this up, the song "My Girl" came on. Pretty funny, huh?
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