![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 23 of 23. This is the beginning of the thread.
Posted by RN320 on March 10, 2007, at 8:32:49
I thought that I'd give all of you who have shown interest on my progress with EMSAM. I appreciate all of the responses I've gotten and some of the suggestions you've offered. I'm also the one who has the T who suddenly became critically ill last November.....for all of you who sent messages of support, I'll be posting on the "Therapy" section of PB to give you an update.
It's been almost 10 months now on EMSAM. I've been holding at 12mg since September, and it's worked really well for me. Orthostatic hypotension not really an issue for me anymore with the addition of Florinef. I've also been on Provigil 200mg since January, and that's really helped eliminate some of the cognitive issues that I've had. All in all it's been a great few months for me -emotionally, that is. The latest battle for me is dealing with the diagnosis of Trigeminal Neuralgia. It's an excruciatingly painful condition, where some of the highest levels of narcotics do nothing to even dull the pain. Am headed to a top Neurosurgeon in an urgent capacity this next week. He now specializes in the treatment of TN. (It normally takes a couple of months to get into see this doc, but I know him personally, and he did my laminectomy over 10 years ago, so he fit me in next Friday the 16th.) I don't know what would have happened to me with the onset of this newest condition if I hadn't been stabilized so well on my psych meds.
Just wanted to give you all an update. if I can get this TN taken care of, I'll be able to got back to a much happier life with the EMSAM/Provigil combo. Regards to everyone!
/m
Posted by chiron on March 10, 2007, at 10:01:23
In reply to 10 months on EMSAM!!- Update, posted by RN320 on March 10, 2007, at 8:32:49
Sorry about your Trigeminal Neuralgia pain. I've never heard of that. It sounds rough.
I'd like to ask you how long it took for you to notice a difference with Emsam. It's been about 2 weeks for me, still down & crazy. My dr wants me to continue & if this doesn't work we could look into Vagus Nerve Stimulation, which he as never done. So obviously, I'm running out of options.
Although he seems to think that I if I exercise and plan "fun" things then things will get better. I probably exercise more than most people, and what is "fun"? I have social activities that I go to because I know its good for me. But nothing is fun for me damn it! That's part of what is wrong with me. Something is wrong with my pleasure mechanism. I have things that I am good at, but that doesn't mean I enjoy doing them. I have a "fun" birthday party tonight but I will still be contemplating death in the back of my head. -sorry for the venting.
Posted by Phillipa on March 10, 2007, at 11:05:24
In reply to Re: 10 months on EMSAM!!- Update, posted by chiron on March 10, 2007, at 10:01:23
This is the person I keep telling everyone who is doing so well on EMSAM. And she is. Love Phillipa
Posted by UgottaHaveHope on March 10, 2007, at 22:51:45
In reply to Re: 10 months on EMSAM!!- Update, posted by chiron on March 10, 2007, at 10:01:23
Chiron: Feel free to vent on this board anytime. Thats is what it is for, and almost always you will better for venting your thoughts. Also, people in here care and want to help you.
I am sorry you are not getting a better reaction from Emsam after two weeks, but I am not surprised because of the short time period. VNS sounds interesting, but there are at least 100 different medicinal combinations you can take. Have you ever thought about taking a TCA with Emsam? If not, look up SLS old posts on this board.
Hell, Ultram sounds like the miracle drug of choice of late in here, but you will need two weeks away (check with doc) from Emsam before trying or it could have bad interaction.
I'm pulling and praying for you, Michael
Posted by exquilter on March 11, 2007, at 1:41:05
In reply to 10 months on EMSAM!!- Update, posted by RN320 on March 10, 2007, at 8:32:49
Dear /m,
I'm delighted to hear you sounding so well. And so sorry you have developed the TN. I had a couple bouts of it several years ago, it truly is worse than even childbirth. Neurontin and Depakote took care of it eventually. Mine was triggered by a very long session in the dentist's chair. Do you have any idea where this came from?
Exquilter
Posted by RN320 on March 11, 2007, at 9:20:16
In reply to Re: 10 months on EMSAM!!- Update, posted by exquilter on March 11, 2007, at 1:41:05
> Dear /m,
>
> I'm delighted to hear you sounding so well. And so sorry you have developed the TN. I had a couple bouts of it several years ago, it truly is worse than even childbirth. Neurontin and Depakote took care of it eventually. Mine was triggered by a very long session in the dentist's chair. Do you have any idea where this came from?
>
> ExquilterGood to hear from you, Exquilter. How are YOU doing? (We've "talked" on severval occasions via PB in the past.)
The only thing that I can think of that may have possibly started this bout with the TN is that I had a bad sinus infection (REALLY bad) that lasted > a month, and this started somewhere near the end of that. I was doing a lot of clearing of my throat, coughing, doing saline/antibiotic washes through my nose several times a day, and than the massive amounts of nose blowing that went on! It's logical to me that this may have done it. Alot of the meds that I'm on now mask signs and symptoms of infection, which is a big problem for me since I'm somewhat immune suppressed. This infection went untreated for a couple of weeks and the only symptom that I had up until it was discovered was that I had become really exhausted. I also had a lot of gross nasal drainage, but since I've got chronic sinusitis I ignored it since there were no other classic symptoms of infection (like headache, fever, etc.) My new Internist is very sharp and picked up on it while I was in her office so I started treatment immediately, but I think it had probably gone on for a few weeks prior. I'm wondering also if during that time I was infected and not receiving treatment that it could have also started the TN off? Those are the only things that I can think of.
The first time I had it, I was having multiple problems and was a diagnostic nightmare, because all of these things occurring at once were from a variety of causes. I had difficulty swallowing (turns out that by CT and MRI that I had many swollen lymph nodes along the right side of my throat), GE Reflux (which made me feel like the constant need for swallowing,especially at night) and both the difficulty in swallowing and the need to swallow constantly were also attributed to tardive problems that went away when the offending med was discontinued. Then I had this pain and buning sensation in my mouth. My dentist took one look in my mouth and said that I needed to see a periodontist immediately, and then my EX-Internist (who was maintaining that ALL of these symptoms were related to "anxiety"- just like he did with the parathyroid tumor, heart disease and diabetes that I'm now treated for by my NEW Internist!!) because my dentist felt strongly that not only did I have a dental (gum) problem, but also systemic illness of some sort, like diabetes (which my ex-internist blew off too). The periodontist told me that I was borderline Mucositis because my mouth was so dry, so i got the treatment plan for dealing with that long term. I had mentioned this excruciating pain to all of them, but really hadn't tied it to any triggers because I wasn't thinking about it in that way and there was just so much other crap going on that I was overwhelmed by it all (DDS and Periodontist mentioned TN as a possibility at the time- my ex-internsit said it was due to anxiety.) I have always been a teeth grinder, and religiously wear a mouth guard. My DDS said that I had TMJ several years ago. SO, you have to remember that ALL of these things occurred over a period of FIVE DAYS and to top it off I got a severe URI (including lungs, ears and sinuses) that ended up taking me 7 courses of antibiotics over 12 weeks to get rid of it. It's like I had such a long list of these odd things that were happening and unpleasant sensations (like losing my sense of taste and choking frequently when trying to eat or take meds....had to go to a Swallowing Therapist to re-learn how to take meds and swallow properly since the Tardive problem had made me change to way I swallowed to compensate) that it just looked like such a mess. Then I took myself to an ENT doc because my EX-Internist wouldn't believe that there was anything wrong with me and my DDS and Periodontist kept saying that there was. The ENT very patiently addressed each and every sign and symptom and tested, diagnosed and treated everything (and showed more than a little irritation about my ex-internist's behavior). By the time I saw him, the TN wasn't acting up that much and I wasn't really able to give it a great description or talk about triggers because there were so many things going on and I was so overwhelmed and although I'd heard of TN, I didn't know what it meant.
I know that I've blathered on here, and I guess the reason is that I'm interested in your feedback based on your experiences with TN. Do you think that I should share the bizarre set of signs and symptoms that all occurred in the fall of 2005 with the Neurosurgeon that I'm seeing this coming Friday? I'm kind of hesitating on this because even though there was an explanation and real test results (swallowing studies, MRI/CTs of sinuses and neck, etc.) to support his diagnoses, I look at this mess and think that anybody looking at it would probably think that I'm a Grade-A Nut Case, and then may not take me seriously- and I DESPERATELY need to be taken seriously, since I'm getting these "shocks" in multiples over short periods of time (like 3 or 4 in a 30 minute window), which are just unbearable and completely paralyze me from doing anything. It makes me really paranoid about eating (and I'm a diabetic, so that's become a real problem for me) and other stuff that are strong triggers. There are just so many of them.... and of course it increases the depression signs and symptoms (which I understand are related to the TN itself....my pdoc has reassured me that I'm not having a set back; it's just that my body has been through so much and simply can't continue to take the stress of anything more. He's working diligently with my Internist- a really TERRIFFIC female Internist that I've gone to since August, who has addressed and dealt with ALL of the things that my previous internist ignored in relatively short order- to try and keep me as comfortable and calm as possible until I can get something more permanently helpful done. She stared me on 300mg Neurontin at bedtime, and when I saw my pdoc 2 days later, he chuckled when he saw the low dose, and told me that "we are going to fix this as much as we can to keep you as comfortable as possible." Then he proceeded to increase the Neurontin to 600mg twice a day, and he said that he might increase it again when I see him on Tuesday. When I told him that 30mg of hydrocodone wasn't doing anything- I mean NO effect whatsoever...like taking a baby aspirin or less!-he said that he's not surprised because his experience with me is that I have a high tolerance to ALMOST ALL meds as evidenced by the fact that I've only ever responded to just about anything he's had me on over the years at high, sometimes more than the recommended maximums (which I know can be common in the Mental Health population, but it applies to when I've had to have anesthesia in the past and also I require huge doses of antibiotics to get a therapeutic effect. Ultram has no effect on me no matter how high the dose; neither do any other NSAIDs like Motrin at 800mg 3Xday.) My Pdoc is not big on opiate pain meds- probably because of what he sees with the drug seekers and addicts in his practice- but in this case had spoken to my Internist twice to convey his concern that I need to be on something stonger- and she has always promptly taken his lead, since he's known me for 6 years now. I'm currenlty on 30mg oxycodone every 4 hours PRN and it's having a very mild effect on keeping me calm and somewhat quiet. But when the pain hits, the Neurontin and oxycodone do nothing to dull it, but I guess that these meds do help me cope with it better. My best freind was taking less oxycodone than me for breakthrough pain in the last months of her life, and she was really sedated from it and it seemed to dull her pain, so I guess my response is yet another sign of the high tolerance I have for most meds.)
If you haven't already passed out or died from boredom by now from reading this ramble-gram of mine- please give me your thoughts. I'd really appreciate them, and also from anyone else out there who may be reading this who have had expereince with TN.
Thanks so much for your response, Exquilter. Regards to all,
/m
Posted by Honore on March 11, 2007, at 11:35:18
In reply to 10 months on EMSAM!!- Update, posted by RN320 on March 10, 2007, at 8:32:49
Congratulations, RN320, on the success with Emsam. I've been taking it for about three months (and also took it for three or fours months last summer/fall).
I'm doing better than I've ever done in my adult life. I just hope it lasts. It's such a great thing for me.
I'm sorry to hear by the nerve pain. Sounds truly awful. Maybe your doctor has some good approaches, that will help very soon.
Honore
Posted by Honore on March 11, 2007, at 11:46:59
In reply to Re: 10 months on EMSAM!!- Update » exquilter, posted by RN320 on March 11, 2007, at 9:20:16
PS, RN320, I just read your second, more detailed post.
I would definitely tell the neurologist. But I would try to have it all written down in a clear, coherent form, and try to simplify to the most relevant details, because he'll have trouble taking in much of the complexity of your case.
I find that doctors do have trouble with complex cases with overlapping problems, so you have to help them absorb it all, by trying to tell them in very short, concrete doses, and trying to lay it out for them in the best, most comprehensible way. (I'm sure you know that, but sometimes it's hard to do it for oneself.)
Maybe your internist could help you to clarify which are the most important issues for him to know about, and which are side issues, which would only confuse him. It is important for him to see the whole picture, because it could affect his treatment plans.
Also, if you present it in the most unemotional way you can (I know that's very hard given all you've and are going through), he won't take you as crazy. I'm sure he wouldn't anyway, but he can make more sense of it, if you are less emotional. Not that he wouldn't expect you to be, underthe circumstances-- but the facts really do need a careful going-over, to figure out what might be contributing, and what might not..
Maybe he can consult with your internist, who can confirm and help him assess some of what she's more familiar with. You do sound as if you need one case manager, so maybe she could act somewhat in that capacity for you
Honore
Posted by RN320 on March 11, 2007, at 20:12:35
In reply to Re: 10 months on EMSAM!!- Update » RN320, posted by Honore on March 11, 2007, at 11:35:18
Thanks Honore for your kind words.
I'm so happy to hear that there's another person on EMSAM that is doing well. I know a couple of others that are improving on it and still getting used to their doses......
About the Trigeminal Neuralgia- I'm going to be seeing a Neurosurgeon that's a world renowned expert on TN this Friday. I'm very fortunate that he's in my area of the country. He also happened to do some spinal surgery on me about 10 years ago, and I knew him when I was in clinical practice, so I trust him implicitly. My pdoc and internist are just trying to keep me as calm and quiet and as possible (which is hard because I have a high tolerance to most any meds) and that plan isn't working real well so far. Even though things aren't working real well thus far, I am comfortable that they're doing the best they can for me. (My pdoc is extremely concerned about this because the level of pain that I'm in is highlighting some of the psychotic/depressive symptoms and he is trying to stop this from happening. He is usually very "Hands-off" regarding medical issues occurring unless they come from his meds. In this case, he's been on the phone at least twice a week talking to my internist about what we can to to get me through this without me killing myself in a moment when I'm not in control (when the pains are coming frequently I simply cannot cope and he says that I am "overriding" my meds...he says it's not totally uncommon for someone whose body simply cannot handle any more.) I see both of them on Tuesday. I just don't know how much more I can take with this pain- seriously.Again, thanks for your kind words Honore.
Best wishes.
/m
Posted by exquilter on March 11, 2007, at 23:19:24
In reply to Re: 10 months on EMSAM!!- Update » exquilter, posted by RN320 on March 11, 2007, at 9:20:16
I'm not surprised that the Neurontin isn't helping much yet. I needed to take 2400 mg plus 750mg of Depakote plus narcotics to manage, not eliminate, the nerve pain. I also discovered certain areas in my mouth that triggered pain and discovered I could minimize pain by avoiding contact with those areas. Very hot or cold foods were likely to cause trouble as well. It sounds like you have had several problems that could have put pressure on that nerve and irritated it.
Your Internist sounds like she could be a lot of help in formulating what info is going to be relevant to the neurosurgeon. Maybe she would be willing to make a summary note for him before you have your appointment on Friday.
Try not to forget that there are still treatment options for this pain and that remission can happen. It has been years since I had a bad attack. Other options include carbamazapine and Lyrica among others, so keep on hoping. I've got my fingers crossed for you.
Exquilter
Posted by UGottaHaveHope on March 13, 2007, at 9:53:18
In reply to Re: 10 months on EMSAM!!- Update » RN320, posted by Honore on March 11, 2007, at 11:35:18
Honore, what dose of Emsam are you taking? And how long did it take for it to really kick in? How did it affect anxiety, good or bad? Michael
Posted by Honore on March 14, 2007, at 20:48:45
In reply to Re: 10 months on EMSAM!!- Update » Honore, posted by UGottaHaveHope on March 13, 2007, at 9:53:18
I'm taking between 9 and 12 mg. It depends on whether I take it off for a while at night. I was, but it's too hard to keep enough on, so I"m closer to 12 mg.
There were some positive effects within about two weeks, but also insomnia and some irritability. The irritability was mostly dose-related, when I took a lot for a while to compensate for not using it at night. It resolved when I took less. So if I take too much, I sometimes notice my mood isn't quite as smooth.
Soon after I started Emsam this time (I took it for a while and had to stop for nonEmsam related reasons), I also started taking a small dose of abilify, which seems to amplify the good aspects of Emsam, without any real downside, except maybe a little more insomnia. But the extra energy I get from it more than makes up for sleeping somewhat less.
Honore
Posted by theo on March 19, 2007, at 21:51:01
In reply to Re: 10 months on EMSAM!!- Update, posted by Honore on March 14, 2007, at 20:48:45
How much Abilify do you take? Do you take it morning or at night?
Posted by RN320 on March 20, 2007, at 9:17:43
In reply to Re: 10 months on EMSAM!!- Update » Honore, posted by theo on March 19, 2007, at 21:51:01
> How much Abilify do you take? Do you take it morning or at night?
Hi-
I don't take Abilify. I tried it when it first came out and it had no effect on me at all. My current Psych Meds are:
Geodon 160mg QD
Provigil 400mg QAM
Trazadone 600mg at bedtime
EMSAM 12mg QDThanks for writing!
/m
Posted by River1924 on March 21, 2007, at 0:40:11
In reply to 10 months on EMSAM!!- Update, posted by RN320 on March 10, 2007, at 8:32:49
Good luck with the treatment for trigeminal neuralgia. When doing your own research, check out info on "cervicogenic headaches." It may give you other options other than surgery. River.
Posted by d0pamine on March 24, 2007, at 21:36:44
In reply to Re: 10 months on EMSAM!!- Update » RN320, posted by River1924 on March 21, 2007, at 0:40:11
10 months here as well. EMSAM is truly amazing. (and truly expensive)
Posted by stargazer on March 26, 2007, at 0:17:45
In reply to Re: 10 months on EMSAM!!- Update, posted by d0pamine on March 24, 2007, at 21:36:44
Hi Dopamine, I'm also on Emsam since Nov. with some success although I wasn't sure in the beginning and it only occurred with the most recent addition of Abilify. Prior to that I did try DL-PA and felt it helped somewhat but not enough to call it a success. I then tried provigil but got bad effects, dizziness, etc. So I was at the point of coming off Emsam awhen the abilify was added and this has greatly increased my mood and feeling of not being so scattered and overwehlemed as I had been. It's a bit early to know if it will hold though so I'll reserve judgement before saying it is really working well. But the early signs are positive.
Do you have to pay for Emsam out of pocket? What is it running a month?
Stargazer
Posted by RN320 on March 28, 2007, at 17:11:22
In reply to Re: 10 months on EMSAM!!-/Dopamine, posted by stargazer on March 26, 2007, at 0:17:45
Hi SG- Sorry it took me so long to respond to you. I was in the hospital for just under a week, and just got discharged last evening.
My(Medicare Part D)carrier covered EMSAM from June through December, but I dropped Humana because their customer service was horrible in my opinion, and they had increased their monthly rates to the point that Humana was now the highest Medicare Part D drug premium in Michigan, and had changed their benefits to the point that it really didn't matter if you had to take a brand name drug or not. Once you got into the "gap" phase, Humana had offered great incentives that had recuited most of us suckers to take the plan: and that all a recipient would have to pay during once the gap hit was the exact co-pays on brand names, etc. Then they quit doing it- totally slashed the whole program in 2007, yet you might notice that Humana's premiums they (yet again) some of the most costly. The company I chose is not far behind from Humana in cost from what I paid Humana in 2006! The company is EnvisionRx.com and as long as you get your fills and refills from COSTCO, they have a wonderful thing from day #1: Generics are free, ALL YEAR LONG(doesn't matter where you are in the gap).if you get your scripts filled and refilled at COSTCO, they are free!!! I'm on over 20 meds a day and I just couldn't say no to this company. But the wonderful part of this is that yes, your generics continue to have 0$ copays the remainder of the plan year!! And no, they don't cover EMSAM at all. I knew that I'd have a train wreck coming my way come January 1 of 2007 regarding this situation. Samples are hard to come by for pdocs. Samples only come in 6mg doses.
When I went on to try and meet the people from ENvision Rx's Insurance Prescription Board, I was told that I'd need to contact them all individually, via phone or email. Everyone I spoke with was very pleasant. They told me that it was Non-Formunlary for their company, and that if i tried to get an exception through that I'd for sure fail, since as far as they're all concerned, EMSAM is just a "designer drug" and there are "many alternative MAOI's out there". So my pdoc said there was no sense in trying to pull off the overturning of an appeal from them with this kind of mindset.So, back in November I contacted BMS (Bristol-Myers, Squibb) and I talked to them about thier patient assistance foudation. I was very sad and started to get tearful because it felt that the people who were supposed to help people like me, aren't really helping me at all, nor did they plan to.
So, in December, a dear friend of mine out on the West Coast, who had been a pharmacy drug rep for many years and who hasn't been in the industry for 20 years now (ever since the day her first child was born). I was just about jumping off the roof when Nancy said that she really felt she could help me- told me that she'd take up where I left off and manage the whole process from now on. She said that from that point off, that I should just concentrate and have a nice Christmas- that she'd manage everything. She'd get a form, and if it was something she could do or do in follow up to it, she'd do it for me. She'd fax me the different questionaires and I'd fill them out and fax them to her. She'd send other things she found out about the drug as we went along. Their (BMS's) requests were about 300% more that they stated. It was a nightmare for me even when the pressure was supposed to be off. In the end, just 2 weeks ago I received my 1st 3 weeks of EMSAM. I'll get 3 more every 2-3 months for a year, but at least I now know what I have to supply to them and won't be a shocked as prevously.
Good Luck to all of you in finding financial support for this drug if you have no insurance or source of financial assistance.
/RN320
Posted by stargazer on March 30, 2007, at 18:51:50
In reply to Re: 10 months on EMSAM!!-/Dopamine » stargazer, posted by RN320 on March 28, 2007, at 17:11:22
RN320,
How are you? Why were you in the hospital? What did they find was wrong?
Hope you are better and that they were able to fix you up.
M.
Posted by RN320 on March 30, 2007, at 22:14:59
In reply to Re: 10 months on EMSAM!!-/Dopamine, posted by stargazer on March 30, 2007, at 18:51:50
> RN320,
>
> How are you? Why were you in the hospital? What did they find was wrong?
>
> Hope you are better and that they were able to fix you up.
>
> M.Hi M-
Thanks for asking about me and my health problems. I had some very strange and rapidly developing symptoms back on my 50th birthday.My internist had this look of fear when she saw me and told me that she had to get me to the hospital quickly....that she would be direct- admitting me. She's usually a fun person- always cheerful and bubbly, but the tone of seriousness and speed of the way things were happening right there in her office, I figured that whatever it was, it must be bad. She told me that she feared that I was either in renal, heart or liver failure.
I told her that I had to go home to make sure that some key bills got paid, cats were going to be cared for, throw some clothes in a bag, take out the trash, etc. and told her that I needed a couple of hours. After much argument she told me that I had 1 hour. Well, it took me 2 1/2 and by the time I got there everyone she had consulted- cardiologist, pulmonologist, heme/onc, my psychiatrist, and yes- my Internist had all been looking for me.
Things got worse from there and after a battery of tests it has been determined that I have Primary Pulmonary Hypertension. My PA pressure was 60, my PaO2 was 54, very alkalytic, anemic. The Pulmonologist says that his alarm comes from the fact that I don't appear symptomatic, so I must have had it for awhile and my body is now failing from the depth of it.
Right now I have was discharged home a few days ago on O2 24 hrs around the clock. I'm at 3lpm during the day and 4lpm at night. I have the ability to be very portable what with the O2 systems today used by homecare companies, and I am trying to just go on with life at this time because I know if they don't find the root cause for this and if I don't keep the oxygen on at all times that I will most likely die- possibly soon.
I feel that I have the absolute best healthcare providers in the world- I've had such losers off and on in my life who called themselves physicians and all of these folks now are very nice, compassionate, very intelligent- a couple I would say are in the category as brilliant. They've also showed an interest and willingness to try and work with me. You can just palpate the awareness and gravity of the situation. Things have been spelled out very clearly to me what they know, have found, and the sense of urgency to identify the root cause. There are several that apply to me, so they need to run with that and get busy!
I'm very emotional, and in pain (from the unresolved Trigeminal Neualgia- and the use of a nasal cannula is also a trigger for the spasms), almost paralyzed with fear and sadness; then on the other hand I am almost indignent that yet again something happens just as I'm stable on the EMSAM and other depression meds, pretty stable with the diabetes, BP, and the heart disease and now, having survived 6 years of hell with all the other stuff that's happened- I may be dead soon. I am just not ready to leave the world- or better stated- I'm not done with the world yet!!
Not meaning to blather on, because I appreciate your concern in asking about me. All I can ask for is the prayers of anyone who cares about me. Thanks,
/m
>
>
>
Posted by stargazer on March 31, 2007, at 18:19:51
In reply to Re: 10 months on EMSAM!!-/Dopamine » stargazer, posted by RN320 on March 30, 2007, at 22:14:59
M,
I'm not very religious but at times like this I do react in a way that brings back all of my religious teachings of my youth. Catholic upbringing and Jesuit education.I wish you well and I am so happy to hear you are under the care of such well repected clinicians who have rallied to care for you. That is very important especially with pulmonary hypettension, of which I know very little, except it is high pressure in the pulmonary system. The O2 value should have been what greater than 90, right and yours was in the 50's! Isn't that considered acidotic rather than alkalytic? Trying to remember from days ago when I floated to the ICU occasionally. Never liked the real technical type of care, myself, but that was your specialty, right?
I will say a few prayers for your quick stablization and hope for success with any treatment you have to undergo. It sounds like you are coping relatively well considering how sick you are. This is when the one day at a time philosophy is called for.
Be well M.
Stargazer
Posted by stargazer on March 31, 2007, at 18:20:00
In reply to Re: 10 months on EMSAM!!-/Dopamine » stargazer, posted by RN320 on March 30, 2007, at 22:14:59
M,
I'm not very religious but at times like this I do react in a way that brings back all of my religious teachings of my youth. Catholic upbringing and Jesuit education.I wish you well and I am so happy to hear you are under the care of such well repected clinicians who have rallied to care for you. That is very important especially with pulmonary hypettension, of which I know very little, except it is high pressure in the pulmonary system. The O2 value should have been what greater than 90, right and yours was in the 50's! Isn't that considered acidotic rather than alkalytic? Trying to remember from days ago when I floated to the ICU occasionally. Never liked the real technical type of care, myself, but that was your specialty, right?
I will say a few prayers for your quick stablization and hope for success with any treatment you have to undergo. It sounds like you are coping relatively well considering how sick you are. This is when the one day at a time philosophy is called for.
Be well M.
Stargazer
Posted by KayeBaby on April 2, 2007, at 12:34:42
In reply to Re: 10 months on EMSAM!!-/Dopamine » stargazer, posted by RN320 on March 30, 2007, at 22:14:59
RN,
I am so sorry to hear of your health problems.
PPA is frightening.I took fen-phen and suffered haert valve problems and borderline PH. It scares me.
It has been a few years since I have done any research but I know since the fen-phen that the treatments have improved remarkably. In your case, if find something causing it it might be reversable, right?
Some of the people I found on the net had unbelievably high numbers-much higher than yours and they were taking a new medication that was really helping.Did you say that you oxygen sats were in the 50's?!
I can't imagine how you were walking around. Did you go to the Dr. specifically due to symptoms?
I have touched the fear that you are experiencing. There was a time where my diagnoses was not clear but was leaning towards pph. I was terrified and cried myself to sleep every night. I am hoping for no progression and mostly I am in denial about it.
I will pray for you to have a reversal.
I am full of empathy for you and am hopeful that you will have a good outcome.Peace,
Kaye
This is the end of the thread.
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