kathy d
 

Hi All,

As you have read kathy d went into the hospital yesterday to recieve her 5 day ketamine infusion. She has waited so long and went through a long wc court battle to get to this point.

I spoke to her on Sunday and she was very upbeat and excited. I just thought everyone would like to know. I am going to try and call her at the hospital on Wed. or Thurs. to see how she is doing..

Gabbycakes

Hi Gabbycakes.

Thanks for letting us know. I will keep her in my prayers. Let us know if you talk with her.

Sandy

Dear Gabby,

You are really thoughtful!! I will always remember with much gratitude the support you provided to me before I went for my ketamine infusions in the spring. You were awesome!! Your phone calls were so deeply appreciated!!

Hope the heat in the NE this week isn't too intense for you and your arm settles down.

XOXOX Sandy

Thinking of you Kathy as you go thru this intervention... I sure hope and pray you get a bunch of relief and benefit ... I will keep the prayers rollin for you and please.... visit with us when you feel better..

Hugz, Kathy:hug:

Thanks Sandy,

The heat isn't so bad this week, I'm surviving. As you know my right arm is the bad arm. During the process of fixing the injuiry on the right arm I had to have a carpel tunnel surgery on the left arm and I am left handed. Never had a problem after the carpel tunnel surgery which was done in Dec 2005. Over this summer I started getting pain and not a little pain in my left shoulder so they sent me to PT which worked as long as I didn't go back to using it as usual. They said it was an inpingement. But the pain is not just in the shoulder it runs down my arm into hand and the hand gets a lot of pins and needles. So I start to wonder can carpel tunnel come back and yes it can. So I am having an MRI of my neck to rule out problems there and then I quess we'll start from the hand and work up. Only me this could happen to. So now I'm dealing with 2 arms that don't work properly. Fun, Fun...


Gabbycakes

Hi Everyone,

I tried to call Kathy last evening but the hospital could not find her. I was passed from department to department. So I'm actually going to call Dr.Schwartzman's office and see if they can just tell me what ICU unit she is in. I have done my boosters with Dr.Schwartzman, they are done across the street you never go in the hospital. Appearantly they have many ICU departments. I've looked at that hospital on my many trips down there and have always said to myself what a big hospital.

Will post later.

Gabbycakes

Hi All,

I spoke with kathy d last evening and she is home and resting. Just wanted to let everyone know.

Gabbycakes

Do you know how she is doing? I hope better. I am thinking of doing this so am interested to hear about it when she is feeling better of course. You are a good friend to keep us up to date too.

I'm sure when Kathy is feeling up to it she will talk about it if she wants to. It's not my place and I don't mean this in a bad way it's just not my place.
Just wanted to let everyone know.

Gabbycakes

Hi Everybody,

I spoke with kathy d today and she is feeling much better and will write as soon as she can.

Gabbycakes

[QUOTE=gabbycakes;700034]I'm sure when Kathy is feeling up to it she will talk about it if she wants to. It's not my place and I don't mean this in a bad way it's just not my place.
Just wanted to let everyone know.

Thanks I totally understand. I hope she is feeling better and resting.

We miss you Kathy.....Get back here feeling good and tell us all about it !

:hug:

My Dear Rsder Family,
I first want to thank you for all your love, support, and prayers this week as I have sure needed it. I did get my five day inpatient Ketamine infusion late on 9/20 at Hahnemann Hospital. It was hell is all I can say. I had the worst experiences while there. I fell and injured my neck, back, and spine, and hands which made my horrific pain even worse this week. They told my family they would keep me 24 hours longer because my BP was 85/45 (but only kept me 6 hours, took a few xrays, and a catscan and sent me home)and that was because I fell. But they never did and sent me home...without even being able to stand on my own two feet. My poor son had to carry me for over two days. I had to even go to the ER the day I came home from severe agony and I thought I was dying. They gave me some meds there which helped a bit. But when they wore off I was dying again. Yes, I did pray several times this week to die and let Jesus take me from all this pain. Even night I lie away in agony from neck, back, spinal pain. Dr. S never even checked me BEFORE I left the hospital. Most of the staff were very young 20 year olds who didn't really care about being there and were mean to me. I know the Ketamine makes you dissociate with your suroundings but this was ridiculous. I felt like they would kill me if I said anything wrong to them. I threwup, had a bowelmovement, pulled out my iv's 3 times that they told my family and hallucinated alot and had no real runderstanding of what I did and how they happened. They never cleaned me nor brushed my teeth for over 8 days. I was a stinky mess. My poor family and my son we so devastated at what they saw and I thought my son was ready for a breakdown (and is still not doing real good now). Our relationship is now even more horrible than it was before now. This is really the first five minutes I have been able to write anything here and it's been 14 days of hell. All I do is cry and don't want to live in this pain anymore. The RSD was bad enough but the Ketamine sedation has been even worse. NO ONE even called me from Dr. S office or the hospital to followup to see how I was doing because I feel hard. My poor 80 year old widows mother has been here with me for a week and yesterday broke down crying to me saying she was so depressed because I was not getting any better. My heart is so broken right now for my whole family and I only sleep about 2 hours a night (again). The rest is spent praying and crying to Jesus to take me out of all this pain. It's so sad.A man would come in with a tray of warm food each morning and for the first three days I did not eat because I did not know what they were or what to do with them. One day a nurse or someone showed me I could eat the warm bagel which I did for the next few days I was there. But I only ate in the am as I was so drugged out I did not know what to do about it. My arms and stomach area severely bruised from Hepparin shots and IVs too. I can hardly move my hands at all from bad pain. I wanted to tell you all to watch out about these treatments that I had at Hahnemann. It was horrible and I still have nightmares about it. No one called me from Hahnemann or Dr. S office so I finally had to on Wed afternoon and let them know what happened to me. I think they are all affraid to talk to me about the bad time I had there. Dr. S only sent me home with Ativan every 8 hours (2mg) which does crap for me. He said to take only Neurontin and Ibubrophen and nothing else. I was on 25 mcgs of Fentanyl for over five years and this is all I get???? No wonder why I am in so much pain. I think he just wants to detox people there. I don't know but I would NEVER go through that week again like that. Now, I am deathly affraid of having to have booster shots this next week since my horrible experiences. Life is so unfair for all of us...we get the rsd pain and now have to deal with this mess and pain. I've contacted my works comp nurse about getting me somehelp here because mom is leaving today and I can' hardly get out of bed or do anything for myself. Has anyone any other suggestions or ideas for me? I would surely appreciate them all. And thanks my dearest friend Gabbycakes for your supportive phone calls in the past few weeks. It helped me so much to know that others had been there before me too. Thanks for all the prayers and keep them coming.
love ya,
kathy d

Dear Finz,
I just love the jewelry you are making (as well as the other rsders too). Can you let me know how much they cost because I might like to get one for myself. Rings hurt and some braclets are to uncomfortable but I like your style.
Thanks,
kathy d

Kathy, I am so sorry about your experience at the Hosp. We are supposed to get well, not tortured.What's the deal with Dr. S. When I saw him many years ago he wanted none of his patients to suffer from any kind of pain! Dis you ever get to talk to him or a social worker before you were released, to tell them what was going on with your pain? I would report this to the administer of the Hosp. tell them how badly you were treated and that you fell in his Hosp. make sure that this is a private issue and you do not want your name on this, as you may have to go back for you boosters, I'm really shocked that this happened, as Dr.S is a great guy,Are you sure that he even knew that all this wierdness was happening? Again I am so sorry for what happened to you,And I hope you get to feeling better real soon.
Your friend Wendy

Dear Kathy,

Wow!! What a bummer!! I also think that you need to ensure that Dr. S is made aware of what happened and how poorly you were cared for while you were hospitalized at Drexel. No one should feel terrorized while they are in the ICU. I'm so, so sorry.

Please take care of yourself and focus on feeling better. Instead of returning to Dr. S for your boosters, you could consider Dr. Getson. His clinic is only 10-15 miles away in Marlton, NJ. He trained wit Dr. S at Drexel for a long time. And I am certain, from my experience with him, that he will not have a problem writing scripts for the meds that you need to keep you comfortable. If you call his office perhaps they will take you right away based on your situation. 856-983-7246.

Good luck to you. XOXOX Sandy

First I am so sorry for all you are going through. I was hoping you would benefit and get relief. Tomorrow I would call Dr S office and ask to speak to him. The nurse will probably call you back but explain what happened and that you need to speak to him directly. The way you were and are being treated is unacceptable. Did you fall in the hospital?
I'm confused if the first infusion there were not benefits and it was such a bad experience do they still do the booster? Sorry if I am lost. Is Hahnemann Hospital where they do the infusions from Dr S? For some reason I thought it was done at Drexel.
I wish I had more answers and relief for you. If you want an email buddy to listen I'm here. Take care.

FYI - Hahnemann Hospital in Philly was acquired by Drexel a few years ago. Same place and people, different name.

Dear Kathy...
 

UNACCEPTABLE!!!! So not right..I am so sorry for everything you and your family had to endure.. I am so in agreement..please, call Dr. S's office..speak directly to him..He needs to hear every point and then the next call needs to be Dr. Getson's, Sandy's recommendation..for your boosters to be done...OMG..that is just terrible.. I hope soon you will get some relief and be able to put this experience behind you... ALL WRONG!!

Love, Kathy:grouphug:

Just to clear some confusion up about Hannanhmein Hospital and Drexel University. Drexel is a teaching medical institution not a hospital there is no "Drexel Hospital". There students from what I understand do fellowishisps and residentsies at Hannanhmein and Hosp. of Philly. Dr. S patients go to Hannanhmein. I think the one very different issue with Hannanhmein is that is was brought my Tenat, which I don't know the connection but they are a medical corporation exactly what they do is a unknown towashed me and changed my sheets everyday the care was incredible. I have also me.

I did mine at Hospital for Special Surgery with Dr. Richman, and I saw him 3x's a day everyday,PT came on Wed. to start moving me and would not let me leave until I could walk on my own, I also had 5 surgeries there and the treatment is was the same.

And one more thing I just have to clear up the boosters, which I did with Dr. S after each time I did a 5 day inpatient , Dr Richman does not do boosters, are nothing like a 5 day inpatient infusion. I don't mean to make light of the people who choose the booster route.

Just all be carefull who you let do this procedure to you.

Good luck.

Gabbycakes

Thanks Gabby for clarifying the relationship between the 2 institutions (Drexel and Hahnemann). I grew up outside of Philly and always had heard that Hahnemann was an amazing place. It seems like something has definitely changed.

Too bad we all can't see Dr. Richman. He sounds awesome. But he doesn't accept WC. As a matter of fact, I may have read that he's not accepting any insurance right now at all...only cash.

Dr. Getson accepted me as a patient, knowing I was a WC victim, and he never sent me a bill (which I ran up to the tune of $40,000). He waited for the RI WC courts to approve payment for his services, which took many months. In the meantime, when I freaked over the under payments by United Healthcare, he calmly told me, "I know I am going to get paid." He is one of the nicest doctors I have ever met. AND he is highly competent. I have yet to find a PM doctor in my home state of RI that will take care of my RSD without WC pre-approval.


Sandy

Kathy -

I am so sorry to hear what you went through.

This is all so strange to me. Six years ago I had a 5-day Lidocaine infusion at Hahnemann, owned at that time by Tenant, with wonderful care provided by Dr. Schwartzman and his group, Drexel Neurological Associates. I remember one morning in great pain - the Lidocaine wasn't working - and a kindly resident prescribed a shot of Demerol. And then when my hospitalization took an extra day because I needed a (now quaint) central line in order to get the leads into my constricted veins, Dr. Schwartzman came in on a Saturday and spent over an hour in a discharge meeting with my wife and me, explaining that a trip to Germany for the ketamine coma was then my best option: something that was scratched once the German doctors learned I had glaucoma.

But in my time, the only thing that people of that time routinely complained of was how hot the 20th floor always seemed to be.

I have no idea what/why things appear to have changed. The one thing that hasn't - to my knowledge - is the ketamine patient's need to remain as stress free as possible in the weeks after discharge, in order for the infusion to do its thing. As tough as that sounds, you have to try and give it a go.

Good luck.

Mike

PS Sandy, let me get the jump on Pete here, Dr. Getson trained with Dr. Schwartzman alright, but it was at Thomas Jefferson Hospital, i.e. pre-Drexel University School of Medicine. Heck, I remember when Drexel was just an engineering school adjacent to 30th Street Station.

Thanks Mike, I knew there was another hospital involved but could not think of the name.

I was shocked also to here of the care but the takeover by Tenat or Tenant
has changed things.

Gabbycakes

Thank you for clearing some of my questions up. So Dr S does not see you daily while you are having the treatments? Is there another doctor who is checking you? See for me the reason I would go to Dr S would be to see him and be treated by him not by someone else.
I'm wondering if things have changed with how Dr S because he is busier now with so many RSD patients plus the other type of patients he see's.
Anyhow kathy I hope you are resting and feeling better.

Dear Wendy and All, Yes I did have a real bad time with the inpatient ketamine at Hahnemann and no I would NEVER go there again to do it. It was the worst experience. I was on Fentanyl for over five years so today I find out that Dr. S "had he known that" which he totally did...would have given me suboxone or something else to help me with withdrawls. It has been a painful and horrible nightmare. AND they want me to wait four weeks for my first booster shot. Everyone there is so laid back and really don't care about me or the pain I am in. I went to ER next day after discharge and then yesterday finally was able to get to my family doc who felt my entire back/neck area in spasms so I am taking more meds for that and still have not slept in over 8 days now. Oh, Dr.s said he would give me "Ambien" which would help with pain and the secretary made a comment like "Boy these doctors get you on this stuff and they you all have problems" I was furious. I would have had more help and treatment going to a detox clinic than to get the ketamine treatment. I never would do it again...I think right now I would rather have intractable pain than to go through what I just did. My son is so depressed (and suicidal) now because he thought I was going to die there and my 80 year old mom had to leave because she was so depressed because I was not getting any better. Work comp today said they can't get me any help around the house even though I can barely stand. Life really sucks for me and my family right now. I have cried over and over and even pray mostly every day for Jesus to take me because I really don't want to live any more. sad but true. Thanks for all your help guys and gals.
love ya,
kathy d

I am so sorry for all you have and are going through. I wish I had words to comfort you and your family and to take away your pain. I know it is so hard to hold to hope but you never know what in the future can help your pain and give you relief. Do you feel you are safe cause I am very concerned about you? Please reach out to a professional if not. I am here by email or phone and I know others here are too.
As for your family I know our condition impacts the whole family so I hope that they get support for themselves in terms of possible therapy and reach out to each other.
Sending feel better thoughts.

Kathy,

I am so, so, sorry for everything that you are going through ! What a nightmare !

Discharging you home unable to walk and care for yourself is unacceptable medical practice. Are you working with a lawyer on your WC claim ? He might be able to help with or recommend someone you could discuss possible legal action with for the way you were treated there.

Have you talked to your primary care doc about your inability to care for yourself at home right now ? Could he refer you for inpatient rehab ?

Did the studies done post fall show any new injuries ?

Hon, of all the times I have wished for a magic wand to slay the rsd beast, I've never wanted it as bad as I do for you right now.

:hug:

Love,
finz

Kathy,
I can't express enough how deeply sorry I feel for what you have been through and your son and Mom. You have our support and compassion from the depth of our hearts. Your treatment sounds so horrific.
I agree with someone who talked about the importance of lowering your stress level. I know that is not easy in high pain or flare. Is there music that brings you comfort, photos of past places of happiness and peace? Can you visualize those places?
I only mention this out of love-as we know anxiety increases our pain levels and we all here are on your side! What ever others do that benefit their pain levels, please mention these to Kathy if you feel comfortable with this request. It can be PM if we have any knowledge of how to get home care. Kathy, I'm going to check into home care for you- what state do you live in? I'll get back with you soon. One of your many friends, loretta with soft hugs:grouphug:

Dear Kathy,

I truly wish I lived closer to you so that I could help you. We all need to stick together....please take care of yourself and NEVER EVER give up. I gave you Dr. Getson's phone number. Try giving him a call.... even if you don't want to do anymore ketamine, he is still an awesome resource when it comes to RSD and he is located very close to Philly.

Send me a PM if you would like. I'm am so sorry for all you've endured.

Love and Peace, Sandy

Oh Kathy, I am so sorry for your horrible experience. You surely do a have a right to feel angry and depressed about what happened along with your family. I will pray for you tonight, and hope you regain yourself again. Lisa