› Forums › General Melanoma Community › Back in the ICU
- This topic has 81 replies, 12 voices, and was last updated 8 years, 11 months ago by
jenny22.
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- January 27, 2017 at 4:06 am
Apparently I just can't get enough of the ICU. This time in Beverly Hills at Cedars-Sinai Hospital.
I needed to get a pericardiocentesis performed to drain the fluid from around my heart. Normally the sac contains just enough for lubrication, a few milliliters at best. Mine is still draining and 810ml has been removed so far. The catheter in my chest is uncomfortable but it needs to remain in place until less than 50ml is drained in a 24 hour period.
Due to a screw up in the ICU, 2 nights ago I was taken off all pain meds for about 6 hours until some doctors showed up that had more than half a brain. My blood pressure had dropped and the nursing staff were afraid to give me pain meds until it returned to normal. All that was required was to infuse me with some IV saline, but that rocket science exceeded the nursing staff who also failed to contact an actual doctor. Once the saline was given, my BP went back up they finally started giving me pain medication again. The bottom line is that I spent 6 hours in agony for no good reason.
I am a much happier camper at the moment and hope to get discharged on Friday or Saturday. Then I can get back to the task at hand of being consented for the trial. I still have high hopes for this trial.
A Phase II Study of Glembatumumab Vedotin, an Anti-gpNMB Antibody-Drug Conjugate, in Combination With Varlilumab (CD27 Checkpoint) in Patients with Advanced Melanoma: https://clinicaltrials.gov/ct2/show/NCT02302339?term=Glembatumumab+Vedotin+varlilumab&rank=1
– Paul
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- January 27, 2017 at 5:57 am
I was really starting to worry, I am so glad to see your post. Sounds like you had some real "winners" taking care of you. I will tell you this is the exact reason I absolutely demand that someone be with Dad at all times while in the hospital (me or mom), its a dangerous place! I am glad to hear that you finally got your pain meds and that you are feeling a bit better. Now maybe those hotties can do there job correctly. Hang in there Paul, we are all rooting for you and hoping that this new plan is your silver bullett. PS: still waiting on Dads results, I can barely sleep thinking about it, sigh.
xo Jen
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- January 28, 2017 at 5:33 am
Thanks Jen, things got much better after that. When the cardiologist that did the procedure found out he went nuts and heads rolled. I also took many opportunities to explain to the nurses that they needed to call the doctor, not just the resident who was out of his depth. I hope future patients are spared that unnecessary agony.
– Paul
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- January 28, 2017 at 5:33 am
Thanks Jen, things got much better after that. When the cardiologist that did the procedure found out he went nuts and heads rolled. I also took many opportunities to explain to the nurses that they needed to call the doctor, not just the resident who was out of his depth. I hope future patients are spared that unnecessary agony.
– Paul
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- January 28, 2017 at 5:33 am
Thanks Jen, things got much better after that. When the cardiologist that did the procedure found out he went nuts and heads rolled. I also took many opportunities to explain to the nurses that they needed to call the doctor, not just the resident who was out of his depth. I hope future patients are spared that unnecessary agony.
– Paul
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- January 27, 2017 at 5:57 am
I was really starting to worry, I am so glad to see your post. Sounds like you had some real "winners" taking care of you. I will tell you this is the exact reason I absolutely demand that someone be with Dad at all times while in the hospital (me or mom), its a dangerous place! I am glad to hear that you finally got your pain meds and that you are feeling a bit better. Now maybe those hotties can do there job correctly. Hang in there Paul, we are all rooting for you and hoping that this new plan is your silver bullett. PS: still waiting on Dads results, I can barely sleep thinking about it, sigh.
xo Jen
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- January 27, 2017 at 5:57 am
I was really starting to worry, I am so glad to see your post. Sounds like you had some real "winners" taking care of you. I will tell you this is the exact reason I absolutely demand that someone be with Dad at all times while in the hospital (me or mom), its a dangerous place! I am glad to hear that you finally got your pain meds and that you are feeling a bit better. Now maybe those hotties can do there job correctly. Hang in there Paul, we are all rooting for you and hoping that this new plan is your silver bullett. PS: still waiting on Dads results, I can barely sleep thinking about it, sigh.
xo Jen
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- January 27, 2017 at 3:10 pm
I'm sorry to hear what you had to go through. Hope your doing well now. I'm glad you posted the link to the study. I'm actually starting this trial next week in Dallas. I feel like I'm starting to run out of options as this will make my 6th different treatment. Keeping my fingers crossed!!
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- January 27, 2017 at 3:10 pm
I'm sorry to hear what you had to go through. Hope your doing well now. I'm glad you posted the link to the study. I'm actually starting this trial next week in Dallas. I feel like I'm starting to run out of options as this will make my 6th different treatment. Keeping my fingers crossed!!
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- January 27, 2017 at 3:10 pm
I'm sorry to hear what you had to go through. Hope your doing well now. I'm glad you posted the link to the study. I'm actually starting this trial next week in Dallas. I feel like I'm starting to run out of options as this will make my 6th different treatment. Keeping my fingers crossed!!
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- January 27, 2017 at 5:39 pm
Oh my wow. You are definitely one tough dude! Mentally AND physically! Good thing you've got such a strong sense of humor. 6 hours of chest catheter pain is unimaginable. **gentle hugs** I once came about 2 seconds away from literally kicking over a fellowship doc. It turned into a high vocal volume dispute over the malfunction of a chest tube drain pump. Had the nurses in the hall not come in to settle the situation, I'd probably still be paying legal fees. They have good intentions, but sometimes the listening could use some work! Hoping you can get out of there TODAY or tomorrow! We're all here pulling for you…. and some of us are close enough to come throat punch a nurse or two if you really need it. 😉
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- January 27, 2017 at 5:39 pm
Oh my wow. You are definitely one tough dude! Mentally AND physically! Good thing you've got such a strong sense of humor. 6 hours of chest catheter pain is unimaginable. **gentle hugs** I once came about 2 seconds away from literally kicking over a fellowship doc. It turned into a high vocal volume dispute over the malfunction of a chest tube drain pump. Had the nurses in the hall not come in to settle the situation, I'd probably still be paying legal fees. They have good intentions, but sometimes the listening could use some work! Hoping you can get out of there TODAY or tomorrow! We're all here pulling for you…. and some of us are close enough to come throat punch a nurse or two if you really need it. 😉
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- January 27, 2017 at 6:44 pm
LOL Niki. I was thinking the exact same thing. I can hop in a car right now and be there in 45 minutes if need be and I may look nice, but I can advocate like no other, been doing it my daughters entire life (she is 22) due to Rheumatoid Arthritis. Don't worry Paul we got your back
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- January 27, 2017 at 6:44 pm
LOL Niki. I was thinking the exact same thing. I can hop in a car right now and be there in 45 minutes if need be and I may look nice, but I can advocate like no other, been doing it my daughters entire life (she is 22) due to Rheumatoid Arthritis. Don't worry Paul we got your back
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- January 27, 2017 at 6:44 pm
LOL Niki. I was thinking the exact same thing. I can hop in a car right now and be there in 45 minutes if need be and I may look nice, but I can advocate like no other, been doing it my daughters entire life (she is 22) due to Rheumatoid Arthritis. Don't worry Paul we got your back
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- January 28, 2017 at 5:44 am
LOL! I got the chest tube pulled this morning after draining over a liter and it feels great. Now I am out of the ICU as well but my lungs are slowly filling back up. They are going to give me a diuretic to combat that but still waiting for the orders to come through. I can't get consented for the trial until I am released from the hospital so I hope they get this straightened out soon.
– Paul
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- January 28, 2017 at 6:15 am
Glad they released you from the ICU. Get that fluid stabilized so you can get the heck out of there!!
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- January 28, 2017 at 6:15 am
Glad they released you from the ICU. Get that fluid stabilized so you can get the heck out of there!!
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- January 28, 2017 at 6:15 am
Glad they released you from the ICU. Get that fluid stabilized so you can get the heck out of there!!
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- January 28, 2017 at 5:44 am
LOL! I got the chest tube pulled this morning after draining over a liter and it feels great. Now I am out of the ICU as well but my lungs are slowly filling back up. They are going to give me a diuretic to combat that but still waiting for the orders to come through. I can't get consented for the trial until I am released from the hospital so I hope they get this straightened out soon.
– Paul
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- January 28, 2017 at 5:44 am
LOL! I got the chest tube pulled this morning after draining over a liter and it feels great. Now I am out of the ICU as well but my lungs are slowly filling back up. They are going to give me a diuretic to combat that but still waiting for the orders to come through. I can't get consented for the trial until I am released from the hospital so I hope they get this straightened out soon.
– Paul
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- January 27, 2017 at 5:39 pm
Oh my wow. You are definitely one tough dude! Mentally AND physically! Good thing you've got such a strong sense of humor. 6 hours of chest catheter pain is unimaginable. **gentle hugs** I once came about 2 seconds away from literally kicking over a fellowship doc. It turned into a high vocal volume dispute over the malfunction of a chest tube drain pump. Had the nurses in the hall not come in to settle the situation, I'd probably still be paying legal fees. They have good intentions, but sometimes the listening could use some work! Hoping you can get out of there TODAY or tomorrow! We're all here pulling for you…. and some of us are close enough to come throat punch a nurse or two if you really need it. 😉
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- January 28, 2017 at 4:27 pm
I went through something vaguely similar, the night following my lung resection, I had a dilaudid PCA, it was doing fine while I was awake. I had asked for something to help sleep because I had a roommate who was older, very loud and refused to turn his lights off. The sleep med worked fine, but when I woke up around 12:30am, needless to say I hadnt hit my PCA button in 4 hours or so, so I was HURTING. I knew I had been written for more dilaudid for breakthrough pain, my doctor and I had discussed it, and I had been given some in the afternoon when I first got to my room from Post op. As an aside, Im a neurosurgical consultant, I work in the OR with surgeons every day, I am not naive, I am very knowledgable in post op pain management. The night nurse said the resident said I could only have tylenol, I insisted that they at least look at my post op instruction, she said, "Sorry, thats all the resident said you could have." Needless to say there was no more sleep that night, tylenol after rib spread, lung resection and a chest tube…when the nurse came in in the morning to check my PCA her eyes about popped out of her head when the machine registered how many times I had been banging that button all night long. She said, "I had no idea you were in so much pain." I said nice try, I told you all night long how bad it was hurting, and you chose to give me tylenol, instead of talking to the resident, you dont get to revise history now. Glory of all glories, the attending and all the residents came in right at that moment! The attending asked how I was doing, and I said not worth a damn! He asked why, whats wrong? I laid it all out for him while eyeballing all of the residents, trying to figure out which one it was, since he or she never even bothered to stick their head in the door during the night to find out what was going on! They all were looking very intently at me until I finished my diatribe and then their notecards all got very interesting to them! Needless to say, I got my pain meds, within about 5 minutes of that! I feel your pain, complain long and loud if your pain needs are not being met!
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- January 28, 2017 at 9:07 pm
Oh my god that's horrible. Thank god you had the PCA but what you needed was an IV bolus to get back on top of that. I totally get there was no sleep that night. What I don't get is why it is such a herculean task to get someone to talk to the resident, or when the resident is out of his depth to call the on-call. Politics I guess.
Thanks for the story! – Paul
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- January 28, 2017 at 9:07 pm
Oh my god that's horrible. Thank god you had the PCA but what you needed was an IV bolus to get back on top of that. I totally get there was no sleep that night. What I don't get is why it is such a herculean task to get someone to talk to the resident, or when the resident is out of his depth to call the on-call. Politics I guess.
Thanks for the story! – Paul
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- January 28, 2017 at 9:07 pm
Oh my god that's horrible. Thank god you had the PCA but what you needed was an IV bolus to get back on top of that. I totally get there was no sleep that night. What I don't get is why it is such a herculean task to get someone to talk to the resident, or when the resident is out of his depth to call the on-call. Politics I guess.
Thanks for the story! – Paul
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- January 28, 2017 at 4:27 pm
I went through something vaguely similar, the night following my lung resection, I had a dilaudid PCA, it was doing fine while I was awake. I had asked for something to help sleep because I had a roommate who was older, very loud and refused to turn his lights off. The sleep med worked fine, but when I woke up around 12:30am, needless to say I hadnt hit my PCA button in 4 hours or so, so I was HURTING. I knew I had been written for more dilaudid for breakthrough pain, my doctor and I had discussed it, and I had been given some in the afternoon when I first got to my room from Post op. As an aside, Im a neurosurgical consultant, I work in the OR with surgeons every day, I am not naive, I am very knowledgable in post op pain management. The night nurse said the resident said I could only have tylenol, I insisted that they at least look at my post op instruction, she said, "Sorry, thats all the resident said you could have." Needless to say there was no more sleep that night, tylenol after rib spread, lung resection and a chest tube…when the nurse came in in the morning to check my PCA her eyes about popped out of her head when the machine registered how many times I had been banging that button all night long. She said, "I had no idea you were in so much pain." I said nice try, I told you all night long how bad it was hurting, and you chose to give me tylenol, instead of talking to the resident, you dont get to revise history now. Glory of all glories, the attending and all the residents came in right at that moment! The attending asked how I was doing, and I said not worth a damn! He asked why, whats wrong? I laid it all out for him while eyeballing all of the residents, trying to figure out which one it was, since he or she never even bothered to stick their head in the door during the night to find out what was going on! They all were looking very intently at me until I finished my diatribe and then their notecards all got very interesting to them! Needless to say, I got my pain meds, within about 5 minutes of that! I feel your pain, complain long and loud if your pain needs are not being met!
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- January 28, 2017 at 4:27 pm
I went through something vaguely similar, the night following my lung resection, I had a dilaudid PCA, it was doing fine while I was awake. I had asked for something to help sleep because I had a roommate who was older, very loud and refused to turn his lights off. The sleep med worked fine, but when I woke up around 12:30am, needless to say I hadnt hit my PCA button in 4 hours or so, so I was HURTING. I knew I had been written for more dilaudid for breakthrough pain, my doctor and I had discussed it, and I had been given some in the afternoon when I first got to my room from Post op. As an aside, Im a neurosurgical consultant, I work in the OR with surgeons every day, I am not naive, I am very knowledgable in post op pain management. The night nurse said the resident said I could only have tylenol, I insisted that they at least look at my post op instruction, she said, "Sorry, thats all the resident said you could have." Needless to say there was no more sleep that night, tylenol after rib spread, lung resection and a chest tube…when the nurse came in in the morning to check my PCA her eyes about popped out of her head when the machine registered how many times I had been banging that button all night long. She said, "I had no idea you were in so much pain." I said nice try, I told you all night long how bad it was hurting, and you chose to give me tylenol, instead of talking to the resident, you dont get to revise history now. Glory of all glories, the attending and all the residents came in right at that moment! The attending asked how I was doing, and I said not worth a damn! He asked why, whats wrong? I laid it all out for him while eyeballing all of the residents, trying to figure out which one it was, since he or she never even bothered to stick their head in the door during the night to find out what was going on! They all were looking very intently at me until I finished my diatribe and then their notecards all got very interesting to them! Needless to say, I got my pain meds, within about 5 minutes of that! I feel your pain, complain long and loud if your pain needs are not being met!
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- January 27, 2017 at 4:06 am
Apparently I just can't get enough of the ICU. This time in Beverly Hills at Cedars-Sinai Hospital.
I needed to get a pericardiocentesis performed to drain the fluid from around my heart. Normally the sac contains just enough for lubrication, a few milliliters at best. Mine is still draining and 810ml has been removed so far. The catheter in my chest is uncomfortable but it needs to remain in place until less than 50ml is drained in a 24 hour period.
Due to a screw up in the ICU, 2 nights ago I was taken off all pain meds for about 6 hours until some doctors showed up that had more than half a brain. My blood pressure had dropped and the nursing staff were afraid to give me pain meds until it returned to normal. All that was required was to infuse me with some IV saline, but that rocket science exceeded the nursing staff who also failed to contact an actual doctor. Once the saline was given, my BP went back up they finally started giving me pain medication again. The bottom line is that I spent 6 hours in agony for no good reason.
I am a much happier camper at the moment and hope to get discharged on Friday or Saturday. Then I can get back to the task at hand of being consented for the trial. I still have high hopes for this trial.
A Phase II Study of Glembatumumab Vedotin, an Anti-gpNMB Antibody-Drug Conjugate, in Combination With Varlilumab (CD27 Checkpoint) in Patients with Advanced Melanoma: https://clinicaltrials.gov/ct2/show/NCT02302339?term=Glembatumumab+Vedotin+varlilumab&rank=1
– Paul
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- January 27, 2017 at 4:06 am
Apparently I just can't get enough of the ICU. This time in Beverly Hills at Cedars-Sinai Hospital.
I needed to get a pericardiocentesis performed to drain the fluid from around my heart. Normally the sac contains just enough for lubrication, a few milliliters at best. Mine is still draining and 810ml has been removed so far. The catheter in my chest is uncomfortable but it needs to remain in place until less than 50ml is drained in a 24 hour period.
Due to a screw up in the ICU, 2 nights ago I was taken off all pain meds for about 6 hours until some doctors showed up that had more than half a brain. My blood pressure had dropped and the nursing staff were afraid to give me pain meds until it returned to normal. All that was required was to infuse me with some IV saline, but that rocket science exceeded the nursing staff who also failed to contact an actual doctor. Once the saline was given, my BP went back up they finally started giving me pain medication again. The bottom line is that I spent 6 hours in agony for no good reason.
I am a much happier camper at the moment and hope to get discharged on Friday or Saturday. Then I can get back to the task at hand of being consented for the trial. I still have high hopes for this trial.
A Phase II Study of Glembatumumab Vedotin, an Anti-gpNMB Antibody-Drug Conjugate, in Combination With Varlilumab (CD27 Checkpoint) in Patients with Advanced Melanoma: https://clinicaltrials.gov/ct2/show/NCT02302339?term=Glembatumumab+Vedotin+varlilumab&rank=1
– Paul
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- January 27, 2017 at 5:14 am
Paul, Sorry you continue to have these hurdles. Keep churning away and you will find success.
Rob
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- January 27, 2017 at 5:14 am
Paul, Sorry you continue to have these hurdles. Keep churning away and you will find success.
Rob
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- January 27, 2017 at 5:14 am
Paul, Sorry you continue to have these hurdles. Keep churning away and you will find success.
Rob
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- January 27, 2017 at 6:01 am
Oh, Paul!!!! What a bunch of mess!!! Glad you are feeling a bit better. Idiots infuriate me and idiots in medicine are a personal affront. So very sorry for all that you have been through! Hang in there. Glad you have been able to retain your sense of humor. Still with fingers crossed for you to start your trial SOOOOOOOOON!!!!!!!!!!!!!!! love, c
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- January 28, 2017 at 5:52 am
Thanks Celeste. And really, stuff like that is an exception to the rule. Most of the time the care I have been getting is excellent. It just feels good to vent that crap and everyone here is so sympathetic it's hard to resist. I feel very positive about this new trial.
– Paul
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- January 28, 2017 at 5:52 am
Thanks Celeste. And really, stuff like that is an exception to the rule. Most of the time the care I have been getting is excellent. It just feels good to vent that crap and everyone here is so sympathetic it's hard to resist. I feel very positive about this new trial.
– Paul
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- January 28, 2017 at 5:52 am
Thanks Celeste. And really, stuff like that is an exception to the rule. Most of the time the care I have been getting is excellent. It just feels good to vent that crap and everyone here is so sympathetic it's hard to resist. I feel very positive about this new trial.
– Paul
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- January 27, 2017 at 6:01 am
Oh, Paul!!!! What a bunch of mess!!! Glad you are feeling a bit better. Idiots infuriate me and idiots in medicine are a personal affront. So very sorry for all that you have been through! Hang in there. Glad you have been able to retain your sense of humor. Still with fingers crossed for you to start your trial SOOOOOOOOON!!!!!!!!!!!!!!! love, c
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- January 27, 2017 at 6:01 am
Oh, Paul!!!! What a bunch of mess!!! Glad you are feeling a bit better. Idiots infuriate me and idiots in medicine are a personal affront. So very sorry for all that you have been through! Hang in there. Glad you have been able to retain your sense of humor. Still with fingers crossed for you to start your trial SOOOOOOOOON!!!!!!!!!!!!!!! love, c
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- January 27, 2017 at 11:04 pm
Oh Paul, I wish you weren't going through all this but I have to say, your sense of humor is beyond precious! I agree, LA is the land of the beautiful people. I had an interview once there (and we are from near Detroit which is pretty gritty city) and I just couldn't handle the level of perfection (weather, roads, people, shopping malls, etc) I was seeing!
I wish you the speediest of recoveries and I hope you are reunited with your fiance ASAP. The US government is pretty interesting, if they need money from you they are HIGHLY EFFICIENT, but if you need something from them, well……
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- January 27, 2017 at 11:04 pm
Oh Paul, I wish you weren't going through all this but I have to say, your sense of humor is beyond precious! I agree, LA is the land of the beautiful people. I had an interview once there (and we are from near Detroit which is pretty gritty city) and I just couldn't handle the level of perfection (weather, roads, people, shopping malls, etc) I was seeing!
I wish you the speediest of recoveries and I hope you are reunited with your fiance ASAP. The US government is pretty interesting, if they need money from you they are HIGHLY EFFICIENT, but if you need something from them, well……
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- January 27, 2017 at 11:04 pm
Oh Paul, I wish you weren't going through all this but I have to say, your sense of humor is beyond precious! I agree, LA is the land of the beautiful people. I had an interview once there (and we are from near Detroit which is pretty gritty city) and I just couldn't handle the level of perfection (weather, roads, people, shopping malls, etc) I was seeing!
I wish you the speediest of recoveries and I hope you are reunited with your fiance ASAP. The US government is pretty interesting, if they need money from you they are HIGHLY EFFICIENT, but if you need something from them, well……
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- January 28, 2017 at 1:53 am
HI Paul – hope you will be out soon. Am just wondering whether you might be the true hotty, and this is distracting the poor LA nurses? Just a thought 🙂
Good luck, hope PIlar will make it and you will be on the trial soon.
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- January 28, 2017 at 12:53 pm
what a nightmare for you, Paul. Now that the twits have sorted your pain out, hope you can enjoy beholding the visions in front of you!!! thinking of you these days and hoping you get going on the trial very soon
maria
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- January 28, 2017 at 9:19 pm
Thanks Maria,
I just found out that the trial will be delayed at least one more week. It turns out I am anemic, and require 2 units of blood and the monitoring that goes along with that. Plus the Angeles Clinic is so busy, they have 20 new patients they have to consent this week. Dr. Hamid wants me to not only be healthy enough to meet the inclusion criteria, but to remain in the trial. He wants to do it all the right way which I agree with.
So hopefully I will be discharged tomorrow or maybe even Monday. Then fly back with a friend to Seattle (I have the barfing pretty much under control now). Then fly back to LA in a week for the consent. Then return a week later to start the treatment. In the meantime, I hope the TIL I just had can keep the mel at bay long enough, especially the spine and brain mets.
I'm really looking forward to getting back to my own bed. The icing on the cake will be the appearance of my sweetie Pilar. Juan is so lucky to have you.
– Paul
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- January 28, 2017 at 9:19 pm
Thanks Maria,
I just found out that the trial will be delayed at least one more week. It turns out I am anemic, and require 2 units of blood and the monitoring that goes along with that. Plus the Angeles Clinic is so busy, they have 20 new patients they have to consent this week. Dr. Hamid wants me to not only be healthy enough to meet the inclusion criteria, but to remain in the trial. He wants to do it all the right way which I agree with.
So hopefully I will be discharged tomorrow or maybe even Monday. Then fly back with a friend to Seattle (I have the barfing pretty much under control now). Then fly back to LA in a week for the consent. Then return a week later to start the treatment. In the meantime, I hope the TIL I just had can keep the mel at bay long enough, especially the spine and brain mets.
I'm really looking forward to getting back to my own bed. The icing on the cake will be the appearance of my sweetie Pilar. Juan is so lucky to have you.
– Paul
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- January 28, 2017 at 9:19 pm
Thanks Maria,
I just found out that the trial will be delayed at least one more week. It turns out I am anemic, and require 2 units of blood and the monitoring that goes along with that. Plus the Angeles Clinic is so busy, they have 20 new patients they have to consent this week. Dr. Hamid wants me to not only be healthy enough to meet the inclusion criteria, but to remain in the trial. He wants to do it all the right way which I agree with.
So hopefully I will be discharged tomorrow or maybe even Monday. Then fly back with a friend to Seattle (I have the barfing pretty much under control now). Then fly back to LA in a week for the consent. Then return a week later to start the treatment. In the meantime, I hope the TIL I just had can keep the mel at bay long enough, especially the spine and brain mets.
I'm really looking forward to getting back to my own bed. The icing on the cake will be the appearance of my sweetie Pilar. Juan is so lucky to have you.
– Paul
-
- January 28, 2017 at 9:19 pm
Thanks Maria,
I just found out that the trial will be delayed at least one more week. It turns out I am anemic, and require 2 units of blood and the monitoring that goes along with that. Plus the Angeles Clinic is so busy, they have 20 new patients they have to consent this week. Dr. Hamid wants me to not only be healthy enough to meet the inclusion criteria, but to remain in the trial. He wants to do it all the right way which I agree with.
So hopefully I will be discharged tomorrow or maybe even Monday. Then fly back with a friend to Seattle (I have the barfing pretty much under control now). Then fly back to LA in a week for the consent. Then return a week later to start the treatment. In the meantime, I hope the TIL I just had can keep the mel at bay long enough, especially the spine and brain mets.
I'm really looking forward to getting back to my own bed. The icing on the cake will be the appearance of my sweetie Pilar. Juan is so lucky to have you.
– Paul
-
- January 28, 2017 at 9:19 pm
Thanks Maria,
I just found out that the trial will be delayed at least one more week. It turns out I am anemic, and require 2 units of blood and the monitoring that goes along with that. Plus the Angeles Clinic is so busy, they have 20 new patients they have to consent this week. Dr. Hamid wants me to not only be healthy enough to meet the inclusion criteria, but to remain in the trial. He wants to do it all the right way which I agree with.
So hopefully I will be discharged tomorrow or maybe even Monday. Then fly back with a friend to Seattle (I have the barfing pretty much under control now). Then fly back to LA in a week for the consent. Then return a week later to start the treatment. In the meantime, I hope the TIL I just had can keep the mel at bay long enough, especially the spine and brain mets.
I'm really looking forward to getting back to my own bed. The icing on the cake will be the appearance of my sweetie Pilar. Juan is so lucky to have you.
– Paul
-
- January 28, 2017 at 9:19 pm
Thanks Maria,
I just found out that the trial will be delayed at least one more week. It turns out I am anemic, and require 2 units of blood and the monitoring that goes along with that. Plus the Angeles Clinic is so busy, they have 20 new patients they have to consent this week. Dr. Hamid wants me to not only be healthy enough to meet the inclusion criteria, but to remain in the trial. He wants to do it all the right way which I agree with.
So hopefully I will be discharged tomorrow or maybe even Monday. Then fly back with a friend to Seattle (I have the barfing pretty much under control now). Then fly back to LA in a week for the consent. Then return a week later to start the treatment. In the meantime, I hope the TIL I just had can keep the mel at bay long enough, especially the spine and brain mets.
I'm really looking forward to getting back to my own bed. The icing on the cake will be the appearance of my sweetie Pilar. Juan is so lucky to have you.
– Paul
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- January 30, 2017 at 3:54 pm
Paul- happy to see you're out of ICU….and have gotten some blood….hoping you afe soon discharged and on your way home for bit, and then BACK to LA and can start the trial.
Sending good thoughts and hope to get things moving along…
Best to you and Pilar!!!
jenny
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- January 30, 2017 at 3:54 pm
Paul- happy to see you're out of ICU….and have gotten some blood….hoping you afe soon discharged and on your way home for bit, and then BACK to LA and can start the trial.
Sending good thoughts and hope to get things moving along…
Best to you and Pilar!!!
jenny
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- January 30, 2017 at 3:54 pm
Paul- happy to see you're out of ICU….and have gotten some blood….hoping you afe soon discharged and on your way home for bit, and then BACK to LA and can start the trial.
Sending good thoughts and hope to get things moving along…
Best to you and Pilar!!!
jenny
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