Oh yes, I have been sedated! Had the broncoscopy (actual term!) today, and though I'm still a little wobbly, I think I'm coherent enough to write a new post. We'll see...
So the procedure is set for 12:30 today at UCLA. Matty was able to get the whole day off to take me - Reason # 7832 why he is the Greatest Guy Ever. My instructions are to not to eat or drink anything at least 8 hours before the procedure. Now, usually, when you get these sort of instructions, whatever you're having done is early in the morning. The going without food and water thing isn't so bad. For the 12:30 procedure, however, that's a little different. And, for those who don't know this about me, I gotta have some food in me within an hour of waking up. Caffeine is nice, too. That's just how it is. So, needless to say, going without both makes me one cranky, cranky gal.
My crankiness doesn't completely alienate Matt, and we arrive at the office (waiting room magazine inventory: Smithsonian=1, Popular Mechanics=3). I'm met there by Tina, Dr. Khanna's nurse who brings an intern and someone else from the department - they all want to watch! At this point, I realize that my booty - or at least part of it - belongs to UCLA since I'm in their clinical trial. It's not a bad realization, just one I hadn't made until then.
Miki, the nurse, preps me for the procedure. She goes to insert the IV in the top of my hand, but if you recall from my first post, the skin there is quite thick. So she's pushing and pulling, jabbing and stabbing with the needle and I'm trying not to squeeze Matt's hand completely off. Miki gives up and tries in the inner crook of my arm. Perfect.
I'm wheeled off to the procedure room where I get to chill (it was pretty cold, but I meant 'chill' as in relax) because the doctor is late. A doctor? Running late? Nawwww.....John the nurse sprays this horrible numbing spray down my throat - twice. Just as I'm feeling like I will never swallow again, the doctor finally arrives and I get what I've been waiting for - the nighty-night cocktail in my IV.
My last coherent (?) thought was looking at the cabinets in the room and being sure that they were getting longer. You know the Haunted Mansion at Disneyland? Where the pictures get longer and scary? Something like that....
I don't remember the first few minutes of being awake, but Matt was kind enough to tell me that he very much enjoyed my mumblings of half-sentences and non sequiters - I guess I was quite funny.
Since there was no need to do a biopsy (good news!) the whole thing went pretty quickly. There was about an hour of epic coughing, but that was to be expected. I was given the Best Glass of Water Ever and sent on my merry way. Miki advised me not to eat any spicy foods for a while, so we went to In and Out and had a milkshake!
I've been sort of in and out of sleep and I'm a little wobbly and nauseous, but hey, it's over and I'm ready for the next step!
Monday, August 27, 2007
Friday, August 17, 2007
Gleevec?
I have a follow up visit with Dr. Khanna after the echo and CT scans are finished. He calls me 2 days before to discuss the results. I'm wondering, why is he calling me now - don't I have an appointment in 2 days?
Dr. Khanna tells me that I have active lung disease that needs to be treated right away. He tells me there is an existing medication that has a horrible side effect profile. It can kill your ovaries and cause infertility. Good lord, is that a side effect? It's also a carcinogen and can cause bladder cancer down the road. Dr. K says he wants to enroll me in a clinical trial for another med that has been used on leukemia patients. He called me in advance so I could research it. The docs believe it is could be beneficial to scleroderma patients due to the mechanism of action. It is an immunosuppressant called Gleevec and comes with it's own fun list of side effects - a good chance of nausea, vomiting, diarrhea, fluid retention around the eyes and legs (what the...?).
Kind of ironic - aside from shortness of breath, fatigue and changing skin, I don't feel all that sick. Yet, I am going to be taking a med that is going to .....make me feel sick.
At the appointment 2 days later, Doc assures me that if the side effects are too bad I can drop out. I reminded him that I gotta look good come October 26th so this "fluid retention around the eyes" thing is a worry. He said we can probably treat that with a diuretic if we need to. Whew!
So, I sign all the consent stuff and learn that the medication is free AND I'll be given $25 each time I go for a visit! That should just cover the parking charges at UCLA...
I just have to get a bronchial scope thing (there's some other word for it, but I forget) done, which is scheduled for 8/27. Sounds like another fun process - I have to be sedated for it! After that, I'm good to go to start good ol' Gleevec.
Dr. Khanna tells me that I have active lung disease that needs to be treated right away. He tells me there is an existing medication that has a horrible side effect profile. It can kill your ovaries and cause infertility. Good lord, is that a side effect? It's also a carcinogen and can cause bladder cancer down the road. Dr. K says he wants to enroll me in a clinical trial for another med that has been used on leukemia patients. He called me in advance so I could research it. The docs believe it is could be beneficial to scleroderma patients due to the mechanism of action. It is an immunosuppressant called Gleevec and comes with it's own fun list of side effects - a good chance of nausea, vomiting, diarrhea, fluid retention around the eyes and legs (what the...?).
Kind of ironic - aside from shortness of breath, fatigue and changing skin, I don't feel all that sick. Yet, I am going to be taking a med that is going to .....make me feel sick.
At the appointment 2 days later, Doc assures me that if the side effects are too bad I can drop out. I reminded him that I gotta look good come October 26th so this "fluid retention around the eyes" thing is a worry. He said we can probably treat that with a diuretic if we need to. Whew!
So, I sign all the consent stuff and learn that the medication is free AND I'll be given $25 each time I go for a visit! That should just cover the parking charges at UCLA...
I just have to get a bronchial scope thing (there's some other word for it, but I forget) done, which is scheduled for 8/27. Sounds like another fun process - I have to be sedated for it! After that, I'm good to go to start good ol' Gleevec.
Humiliation Day
Dr. Khanna said I needed an Echo Cardiogram and a CT scan to further determine the internal damage. I have them both on the same day and go to the CT scan first. The instructions I received said - no zippers or snaps on your shirt. Fine. I go with my zipperless and snapless Tshirt, only to be asked - Are you wearing an underwire bra? Uh, do they make other kinds? So I have to remove that and I'm already feeling exposed. Test is a snap, though, and I mosey over to the Echo Cardiogram office.
Still feeling a little uncomfortable from before, I'm asked to completely undress on the top and put the hospital gown on with the opening facing - you guessed it - forward. The guy is very nice, but let's face it, he's not an MD, so Mr. Non-MD has this wand thing covered in jelly stuff and he's all over my left breast like a 15-year-old enjoying his first time at 2nd base. It's kind of cool, seeing your heart on the monitor, so I pretend to be engrossed in that while I'm trying not to appear completely mortified by the process. Then, to really drive home the humiliation, when we're done, Mr. Non-MD picks up a towel and proceeds to wipe the jelly stuff off my chest. I snatched the towel from him and said (I may have yelled) "I can do that!"
Luckily, Matty was able to meet me after for a little bit. He let me vent, vent and vent some more!
All said, not a fun day...
Still feeling a little uncomfortable from before, I'm asked to completely undress on the top and put the hospital gown on with the opening facing - you guessed it - forward. The guy is very nice, but let's face it, he's not an MD, so Mr. Non-MD has this wand thing covered in jelly stuff and he's all over my left breast like a 15-year-old enjoying his first time at 2nd base. It's kind of cool, seeing your heart on the monitor, so I pretend to be engrossed in that while I'm trying not to appear completely mortified by the process. Then, to really drive home the humiliation, when we're done, Mr. Non-MD picks up a towel and proceeds to wipe the jelly stuff off my chest. I snatched the towel from him and said (I may have yelled) "I can do that!"
Luckily, Matty was able to meet me after for a little bit. He let me vent, vent and vent some more!
All said, not a fun day...
Background
Welcome! For those who haven't heard about the fun medical stuff I've been dealing with - or maybe you were tuning me out when I've been talking before, here's what's been going on.
Somewhere over last winter, I noticed some changes on my skin - fading pigment and what appeared to be calluses on the tops of my hands (how does one get calluses on the tops? hmmm....). Plus, itching and it just appeared different. I go to my friendly dermatologist, thinking I'd get a prescription and be sent on my merry way. He was struck by the symmetry of everything and suggested it might be scleroderma, an autoimmune disease that attacks connective tissues. At the time, he explained that there was the type that only affects the skin and "the bad kind" - the type that is systemic and attacks organs. It is worth noting that during our appointment, he left me in the room for about 15 min so he could look stuff up on the PDR! Around this time, I'm thinking "hmmmm..."
Tests are done, and Dr. Dermo refers me to a Rheumatologist, doctors who specialize in autoimmune diseases (as well as arthritis - I'm like the youngest person in these waiting rooms!). A booty-load of tests are done at this point. I go back in and Dr. Rheumo explains that I do indeed have systemic scleroderma (the aforementioned "bad kind"). He explains that it's already attacking my lungs, to the point where my lung capacity is only at 60%. Y'all know I don't smoke, right? Not good...
Dr. Rheumo says I should see the department at UCLA. He says they are among the best in the country - on the level with Johns Hopkins, Mayo - you know, all the heavy hitters. I don't argue - sure it's a considerably longer drive than Torrance, but we're not talking about a sprained wrist here.
It's around this point that I get a little freaked out. I hardly ever get sick, yet suddenly I'm in and out of doctor's offices, getting poked and prodded and X-Rayed seemingly on a daily basis. Plus, the whole idea that I have this chronic, rare and potentially fatal disease is weighing on my mind pretty heavily.
At UCLA, everyone is amazing, and I start to relax. Dr. Dinesh Khanna is my doctor and Tina Burger is the nurse. Everyone is cool and nice and really understanding. Tina gets me support group info as well as the number of a long-time scleroderma patient for me to call. Dr. Khanna explains that this does not have to be a death sentence and it can be treated.
I leave with instructions to buy a blood pressure checking device - I'm to check it 3 times a week. There is a danger that the kidneys could be affected and a spike in BP will warn me of that. I'm also given Nexium - evidently my GI tract is showing signs of beng affected and the Little Purple Pill will help protect my esophagus. Sigh...
Follow up visits on next post - stay tuned!
Somewhere over last winter, I noticed some changes on my skin - fading pigment and what appeared to be calluses on the tops of my hands (how does one get calluses on the tops? hmmm....). Plus, itching and it just appeared different. I go to my friendly dermatologist, thinking I'd get a prescription and be sent on my merry way. He was struck by the symmetry of everything and suggested it might be scleroderma, an autoimmune disease that attacks connective tissues. At the time, he explained that there was the type that only affects the skin and "the bad kind" - the type that is systemic and attacks organs. It is worth noting that during our appointment, he left me in the room for about 15 min so he could look stuff up on the PDR! Around this time, I'm thinking "hmmmm..."
Tests are done, and Dr. Dermo refers me to a Rheumatologist, doctors who specialize in autoimmune diseases (as well as arthritis - I'm like the youngest person in these waiting rooms!). A booty-load of tests are done at this point. I go back in and Dr. Rheumo explains that I do indeed have systemic scleroderma (the aforementioned "bad kind"). He explains that it's already attacking my lungs, to the point where my lung capacity is only at 60%. Y'all know I don't smoke, right? Not good...
Dr. Rheumo says I should see the department at UCLA. He says they are among the best in the country - on the level with Johns Hopkins, Mayo - you know, all the heavy hitters. I don't argue - sure it's a considerably longer drive than Torrance, but we're not talking about a sprained wrist here.
It's around this point that I get a little freaked out. I hardly ever get sick, yet suddenly I'm in and out of doctor's offices, getting poked and prodded and X-Rayed seemingly on a daily basis. Plus, the whole idea that I have this chronic, rare and potentially fatal disease is weighing on my mind pretty heavily.
At UCLA, everyone is amazing, and I start to relax. Dr. Dinesh Khanna is my doctor and Tina Burger is the nurse. Everyone is cool and nice and really understanding. Tina gets me support group info as well as the number of a long-time scleroderma patient for me to call. Dr. Khanna explains that this does not have to be a death sentence and it can be treated.
I leave with instructions to buy a blood pressure checking device - I'm to check it 3 times a week. There is a danger that the kidneys could be affected and a spike in BP will warn me of that. I'm also given Nexium - evidently my GI tract is showing signs of beng affected and the Little Purple Pill will help protect my esophagus. Sigh...
Follow up visits on next post - stay tuned!
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