So, indeed, I cheered up and it was worse. I am here this Wednesday morning to torture a few adages and mix a few metaphors.
After a rollercoaster ride of straight up near-euphoria and then immediate all-the-way plunges down, on Friday afternoon I began to experience pain in my lower abdomen, pelvis, and lower extremities, worse of the left, that left me frazzled and nearly in tears. Off to Urgent Care. A Doppler study showed decrease flow in femoral and popliteal arteries as well as decreased return via the veins. Prescription was waist-high TED hose, limited weight bearing, bed rest (going for dialysis nearly everyday less that conducive to all that) and an increase in dialysis from 4 hours/6 days/week to 6 hours.
By Monday forenoon I simply could not stand the pain any longer and was admitted for an outpatient laparoscopy: non-hæmorrhagic extra-renal infarct was the finding. The infarct, an area of necrosis, was at the juncture of the renal artery and the kidney. It was caused as the folding of the protein responsible for the previously diagnosed renal amyloidosis. The LAP demonstrated areas on necrosis around the infarct and I was airlifted to a hospital in Phoenix.
Monday night I was taken into surgery when left kidney and the entire left renal artery were removed via LAP. Then a midline incision from sternal notch to pubis was made for exploratory surgery; in the process of exploration about 18 inches of my colon was removed, as was my bladder. The surgeons constructed an ileal diversion and ostomy for urinary drainage (as of this AM the estimate of right kidney function is about 10%).
I was transferred from surgical ICU to isolation dialysis this morning…a rather dreary room whose only saving graces are a skylight and a shower. I am not authorized to visit the shower as yet, but a kindly orderly gently washed my hair and helped me change into pj’s in lieu of that superb backless gown. I am on continual hæmodialyis, however this unit has an ambulatory feature wherein a ‘portable’ section unlatches and provides 15-20 minutes of filtration before the buzzers sound.
FWIW, that is where I am. I send everyone my very best wishes for a wonderful day, a comfortable week, and a July 4th replete with peace, family, friends, and a moment of how the date came to be so important in history.
Cheers, Shug
Not fair! Shug I am so sorry this crap is happening to you! Through it all here you are posting your support for others in the midst of you illness.
Do you have someone to keep you company? How long do they anticipate your stay?
What is the next course of action?
Prayers and good thoughts coming your way.
Just wanted to let you know I'm thinking of you...I am right there with you Shug, every step of the way.
sending you hugs and wishes for a steady and speedy recovery! Good Morning Shug. You have every right to feel the way you do, even the depression. I would be surprised and cautious if you didn't have all of these feelings. The secret is just don't dwell too long in any of these emotional cellars. Sometimes you just need to be by yourself and not interrupted. I caused a stir post op knee replacement because I refused any services one afternoon. No PT, no pulmonary treatment, no nurses checking every 1/2 hour, no walking and they called my doctor in. I just wanted 5 hours to myself. PT and pulmonary had to rearrange their schedules and my doctor completely understood. If you need some time to assimilate then demand it. Your issues are totally different than mine were and I'm not sure how I would react to what you've had done. You can only do the best you can, and I think your best will get you through most anything. You're in my thoughts quite often. Lindy Horray for improvement. Look up the sky on the net. Not the same but give it a try. Lots of stars and planets. maybe Stephen can send you some good sky pics? imagine the smell of freshly cut grass and shoo away a pescy fly. Look out the bee's are bad this time of the year. Someone has there grill burning charcol. It is so hot the sweat is dripping from your head. You had better head back inside for some airconditioning.
[QUOTE=wanttobeRAfree]Sounds like you will just have to keep visiting with us then! Hope the status changes soon for you though!
I sure would like to keep this on the top... The truly ironic thing about the chaos is that I can count on three digits of one hand the times in my life when I have been bored. I like myself and am very content with my own company and I just do not have either the inclination nor the time to be bored with life or with the world! To make things more comfortable for me, Bob sent a package with enough baggy old capris and well-worn and washed cotton "t-shirts" for a week. My own clothes! Yippee! They have to go through the hospital laudry before I can wear them, but it was promised that they will be back her before 1 PM...it in now 11:20. An-TIC-I-PATION! Shug, Steps in the right direction!
Horray for food. Sorry it is hospital food. Still I am sure you are happy about it. Just that it is a sign that you are doing better. Sounds like they will have to let you out of there soon. Keep up the good work. Good evening Shug, I'm sitting here reading your post and eating some fresh fruit, we're having our evening snack together! I'm going to bed early because I'm off to Reno bright and early in the morning to shop for furniture. I'm not looking forward to it......really, it's a chore and I'm not sure what I want. I know what I don't want, does this make sense? I may come home without purchasing anything. All I know is I don't want to take DH, I'm confused enough as it is. Hope your night is better and you get some much needed sleep. Good night. Lindy Shug..... to know the goal of going home is ultimate... to know the pump can help and make you comfortable makes me glad... Hang in there.. You're progressing VERY quickly !! *hugs*
Mary-Pat
Thinking of you and sending good thoughts your way.
Spelunker,
Don't you just want to wipe that grin right off PT's and RT's little faces! I mean, that cheery attitude gets to ya after awhile! I know, they are just doing their jobs but still... I would come up with all kinds of evil plots when I had my chest surgery! Ah, the thoughts of the wicked!
Shug, I think of the battle you are facing more often than you know and I wish I could do more than offer my hope and energy to you. Keep putting one foot in front of the other, Shug, and I will keep you in my thoughts and close to my heart.
Oh I don't do the art because of the RA issues. Not the pain really because it does not look the same. My right arm has been rather useless the past oh several years. Supose I could find a new style. LOL Glad you seem in a bit of alright spirit. Glad the medicine is helping. now is it safe for you to be moving furniture. that is a project. I know you want to rush the surgery but maybe wait for a cancellation. PrayersWoops sorry I saw Waddie and that post was supposed to be on her update of the ticker. Just put it on the wrong thread. Sorry Shug. Well I will try to find the right thread and write it again.Thanks Milly, I am sure Shug doesn't mind and understands completely. Besides, it gives me another chance to check in on Shug and wish her roses and red shoes!
I'm thinkin' on ya, Shug!
Yes, Waddie, I covet those red shoes. Please do not injure either yourself or your dear Mother as you wrest them away from her!
andagain
The Sun is casting early morning shadows through the skylight, more drains were removed, and with minimal assistance from the ostomy nurse I was able to do what was needed to care for the surgical opening and replace the ostomy appliance that had sprung a leak (more to that than meets the eye), then a nice warm shower, a hair wash, and a set of clear pjs. A new body for a new day...
The surgeon was in this early AM and he brought my kidney for a visit. Shocked is the only way to describe my reaction when I looked at it the first time. It is not much bigger than my thumb, grey-blue in colour (which might be the result of the fixative, but I have not convinced myself of that as yet), and instead of being kidney-shaped it is twisted nearly double.
No wonder I had such pain.
I was very surprised when the nurse delivered my weekly 50 mg. of Enbrel last evening and asked a great many questions that lead to the surgical resident being called. He told me that in Grand Rounds the consensus had been reached that getting my RA under "some kind of control" had to take precedence and that the staff was fully prepared to take whatever steps were necessary to contain any side effects. Additionally, he explained that for the next "several" weeks I would also be injecting 25 mg midweek. I am still digesting that bit of information.
Anyhoo, thanks for your support, your concern, and your caring. It means a great deal to me.
Cheers! Shug
Shug, what a nightmare for you. I wish I could be your very own private nurse; I'd do everything to the nth degree to help you recover. I'd pamper you yet make you do all the necessary evils like getting up, doing your breathing exercises and then I'd curl up on my chair for my daily deep afternoon sleep... kinda unconventional for a private nurse, but hey, I'd be free because I wouldn't want to mess up my Disability! Don't minimize your pain level number when the nurses ask; nobody wants you to be in pain.
It is amazing you could stand the pain you went through with the kidney like that! I don't know how you made it through the weekend. There could have been nothing you could do to bring you relief. {{{{{{Shug}}}}}} I wish I could do more that offer virtual gentle hugs, but there it is.
I had no idea you could take that much Enbrel. What else are you able to take? I would imagine steroids are out and I don't know about other DMARDS. Are you on MTX? I am a strong believer in Enbrel and I hope it gets the job done for you soon. I hate the thought of going off the Enbrel for my surgery. When I had the pleurodesis done, both times the worst pain was from the RA. I positively begged to restart my meds!
Since Lindy and I will be tag team nursing you, I'll have time to use some of my forensic nursing skills and find the evidence of who committed this terrible crime on you!Shug, I just saw you post an answer to somebody else. Whaddya doin girl? You're supposed to be resting and recovering. Just kidding, we are probably a better distraction than TV. I do wonder though how you can think straight with either pain or pain meds. Do whatever it takes to help distract you, as long as you fulfill all your patient duties too.
[QUOTE=Spelunker]Thank you all so much...this is being less than a sterling morning and what bits of physical strength I possessed yesterday today they have evaporated.
When my mind quiets for a moment and the flood of questions settles, I return time and again to the single point that maybe, just maybe, had my rheumatoid arthritis been treated aggressively and control been gained soonest all this could have been avoided. And then there is this discomforting back-of-the-neck feeling that this may be on the beginning. However, that is most likely just the physical after effects of surgery speaking through exhaustion, frustration, and the fear of getting ready to look at this "new" body when they come to change the dressing and removed some of the drains.
[/QUOTE]
Hang in there, stay tough!
[QUOTE=CathyMarie]Since Lindy and I will be tag team nursing you, I'll have time to use some of my forensic nursing skills and find the evidence of who committed this terrible crime on you![/QUOTE]
Ah, HAH! That crime was laid at the feet of R.A. Uncontrolled in Flammation by a group of sleuths, moonlighting as physicians, at Huntsman Cancer Center a few weeks ago. Old R.A. in Flammation is being sought by the authorities as I type this.
I sincerely appreciate the offer of tag-team nursing and will, undoubtedly be calling on the two of you as soon as they release me from protective incarceration.
The surgeon did liberate some of the articles in my backpack, so I now have my own laptop with its precious files and my portable CD player and a handful of books that I have not yet listened to.
I have actually taken little pain medication since late Tuesday evening and in comparison the the level of pain before the surgery, post-surgical discomfort has been more than tolerable.
Waddie, according to some articles presented to me re: Enbrel the dosage for use in renal amyloidosis can be 200 mg a week on a gradually increasing dosage (a tad bit frightening in light of a recently article posted by Lynn). As Enbrel is the drug-of-choice I am fortunate that it will also begin to control the inflammation of RA.
I was taking Arava, 20 mg/day. But being NPO until peristalsis returns to my GI tract I will be taking 25 mg MTX subq beginning tomorrow AM. As I was on such large doses of prednisone it is now being pumped into my veins and, alas, from conversations with the surgeon and the rheumatologist I can count on that for some long time to come.
Lindy, my general mood is much improved after being left alone all afternoon yesterday and finding that I can manage wound care and basic ostomy care without too much difficulty, BUT I really could use a good, long, hard laugh!
We could send you a pack of Enbrel with a shiv and a file hidden inside so you could break out of your imprisonment
sorry
And then I could ride away on this unicycle with the John Deere green tractor seat, throwing silly putty grenades and with a squirt of liquid soap in the bubble pipe I could lay down a cloud cover.
Good idea, JR, good idea.
See, now you're thinking! Keep giving 'em hell!
Hope you are doing well today, Shug!
Much hugs
It was wonderful to see him and to have him hold me, even dressed in his "spacesuit". He is so tall that the staff had a difficult time finding a 'suit that would cover his street clothes. They finally has him shower with betadine, dress in scrubs, and them covered the scrubs as best they could with the 'suit.
I trust everyone is enjoying this day, relishing the weather whatever it is, and looking at the sky just out of joy!
so....... we need a bubble for you when you make the great escape? COOL!! I'll get right on it...
Here is one from me too!
A HUG is the best medicine available even if there's a space suit between you. I'm enjoying the great expanses of the Nevada sky today. Tomorrow will be cooler and so will the rest of the week. I'm looking forward to 80 degrees. Take care. Lindy80????
[QUOTE=babs10]so....... we need a bubble for you when you make the great escape? COOL!! I'll get right on it...
So good news this morning! The continuous HD (dialysis) has had a positive effect on my BUN/CR levels (I actually have a ratio again) and my blood pressure has been steadily decreasing for the past four days. That, despite the physical assault of surgery. I take my good news where I can get it!
The surgical intern removed every-other staple from my abdominal wound and all from the small incision on my left side and the ostomy nurse brought an assortment of different types and styles of ostomy appliances and bags. That job of personal care does not come easy for me. I am all thumbs when it comes to getting the opening in the wafer directly over the "rosebud" and pressing down firmly enough to set the wafer's glue (my fingers just do not press down anymore, especially for any length of time!). As if most things in life, practice will improve my technique and my skills will come together eventually.
The PopeMobile! I love it and I have to tell all of you that my last name is... ... ...Pope!
[/QUOTE]
Shug, you have made my day! This is the first post I always check in hopes of hearing from you. Just hearing of your improvements will make this day easier and much brighter! Hopefully, with everything else coming into line, the Enbrel will get to work and the RA will fall into a quiet place.
A tiny patch of sky is what keeps you sane... well, surely, I thought it was this place! Very good news! Hope things continue in a positive way!
So how's the Popemobile coming? When are you going to come out and take a spin around the block?
Yeah, and I hope you get that Popely wave thing down too... sort of a cross between the Queen wave and a beauty queen parade wave.
Glad to hear your good news! Hope there's plenty more where that came from!Awoke this morning to the Sunrise shining in the window of the "new" room I acquired last evening. I am now the proud owner of enough white blood cells to be moved from protective incarceration to the HD unit. Next up is to for peristalsis to return and then I can even have a drink, albeit a small one, on water. No amount of glycerin and lemon swapping takes care of the nagging desire for a sip of water
The nephrologist visited this morning (first time I remember actually speaking with him, rather than him simply talking at me) and told me how pleased he is with my blood pressure and that I have been averaging an urinary output of 240 cc/24 hours. We spoke at length re: long term prognosis, life-style/level of activity, diet, dialysis, etc..
Next in was the surgeon whose assistance finished removing the staples as he gave me his version of prognosis, life-style, et al: I asked him if he and Dr. Kidney had rehearsed. Their caveats, concerns, and constraints were spoken nearly word-for-word.
So, now I have a view (but still do not have a window that opens) and I will cough, deep breath, peddle that stationary bike, exercise my hands with silly putty and wait to pass gas.
Meanwhile I will practice the wrist/wrist/elbow wave.
Keep up the good work! You are quite the trooper! Hope all your hard work pays off with that sip of water you are craving! (Sure doesn't seem to be much to ask) Best of luck to you!baby steps, Shug... baby steps....
I suppose this new room means more visitors too? Or more frequent visits and more hugs from Bob? That has to feel good!
I hope you get that sip of water soon and escape plans are still being formulated.
Loads of hugs and
Wow, quite the story...sort of puts things into perspective. I am soooo sorry to hear all you have been going through. Phx has great hospitals, you are in great hands. I have had several experiences in them myself. Hope you continue to regain your health. I may not know you, but want you to know you are in my thoughts and prayers. You truly are in inspiration.TTT to see how things are tonight!
Hi Shug, you are truly an inspiration, hope you are comfortable and getting all the help you need, press that buzzer and don't be afraid to ask. Prayers still flowing I am sure from all of us on here, regards and gentle hugs, Janie.
Still on "no visitors" status. Too many summer colds etc. in the 'outside' population to risk a coincidental exposure. I have been told, then told again and again, that I will need to be zealous in safeguarding my health for a very long time. IF, big if, things go as planned Bob will come visit over the weekend.
He has to be home and available to the crews that are working on getting our house ready for me to go home and is, according to him, busy being a dog-sitter. Seems not one of the animals is minding him (makes me go hmmm) and one made the great escape--dug out under the kennel fence, jumped over two gate and was sitting at the front door at dawn. Bad dog!
Another day awaiting bowel sounds is on my agenda, other than that simply enjoying the view outside my window.
Best wishes to each of you: may your day be filled with the Sunshine of joy and the Moonshine of contentment.
Sounds like you will just have to keep visiting with us then! Hope the status changes soon for you though!
Hummmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm
Hi everyone. JR thanks for that mental image...a ten year old boy indeed.
This has been less than a sterling day...after a less than sterling night. About 8 AM this morning I was in so much generalized discomfort that I requested something for pain. Unfortunately, this request lead to an painful standoff with the charge nurse. She insisted that as I had not had any pain medication since last Thursday that there was no way, "...this long post-surgical" that I could have enough pain to warrant pain medication and that she would have to contact the doctor if I continued to insist on pain meds.
~sigh~ I know that there is a standing order for both subcutaneous and IV pain medication on my chart as both the surgeon and the nephrologist made a point of telling me that meds were available should I need them.
That was undoubtedly the wrong thing to have mentions and the confrontation escalated into some further unpleasantness and I invited her to leave my room and to not return.
She called the surgical resident and reported me as being out of control and abusive. I probably do not need to detail what then took place and the chaos I created by requesting something for pain. ...
In the midst of all this the rheumatologist stopped in. He first heard the tale of my being out of control and abusive. He very politely told the nursing staff that that was so much digested hay and water. He then requested the pain medication that is a standing order, delivered it to me personally, and with a flourish pushed the medication IV.
According to the gossip circulating on this unit, the surgical resident, the doctor, and the nursing team had a meeting that will most likely result in disciplinary action. I am heartily sorry for that and wish the day could be rewound and that I could have more eloquently expressed why I was requesting pain medication this far removed from the surgical procedure. My hands/wrists feet/ankles still feel as if they are locked in a vice.
Cheers to everyone!
[QUOTE=Spelunker]Hi everyone. JR thanks for that mental image...a ten year old boy indeed.
This has been less than a sterling day...after a less than sterling night. About 8 AM this morning I was in so much generalized discomfort that I requested something for pain. Unfortunately, this request lead to an painful standoff with the charge nurse. She insisted that as I had not had any pain medication since last Thursday that there was no way, "...this long post-surgical" that I could have enough pain to warrant pain medication and that she would have to contact the doctor if I continued to insist on pain meds.
~sigh~ I know that there is a standing order for both subcutaneous and IV pain medication on my chart as both the surgeon and the nephrologist made a point of telling me that meds were available should I need them.
That was undoubtedly the wrong thing to have mentions and the confrontation escalated into some further unpleasantness and I invited her to leave my room and to not return.
She called the surgical resident and reported me as being out of control and abusive. I probably do not need to detail what then took place and the chaos I created by requesting something for pain. ...
In the midst of all this the rheumatologist stopped in. He first heard the tale of my being out of control and abusive. He very politely told the nursing staff that that was so much digested hay and water. He then requested the pain medication that is a standing order, delivered it to me personally, and with a flourish pushed the medication IV.
According to the gossip circulating on this unit, the surgical resident, the doctor, and the nursing team had a meeting that will most likely result in disciplinary action. I am heartily sorry for that and wish the day could be rewound and that I could have more eloquently expressed why I was requesting pain medication this far removed from the surgical procedure. My hands/wrists feet/ankles still feel as if they are locked in a vice.
Cheers to everyone!
[/QUOTE]
Hope the meds have you feeling comfortable.
Just wanted to let you know you inspired me to put in an exercise DVD after work today. OK- I couldn't follow the dance moves so I made up my own LOL- I think it still counts. I stuck to it for 30 minutes!
Keep us posted on your progress.
They haven't taken an attitude towards you have they? They better be treating you right!
I am certain you weren't out of control for one second...... and I agree wholeheartedly w/ SnowOwl's discription of the NOTnurse.
WAY TO GO! Those nurses are there for you. They have NO idea what you are going through, she should be ashamed. Don't you dare apologize. Take care.THank you Spalunker! GRABE! ang tapang mo Spalunker! your a fighter!
Now i know the importance of PREVENTION. thank you Spalunker! you make me realize to give love and care to out own body.
try this: www.firstvitaplus.net
it can help you recover faster....
Top up
Unfair!
My 'boredom' has sent my ESR back into triple digits, caused my small joints to blossom with swelling and bright red inflammation and this morning weight bearing is akin to walking across a field of broken glass.
HOWEVER! This too shall pass. My blood pressure remains stable, my BUN/CR level are normalizing, and I have faint bowel sounds in my upper left quadrant. That drink of water is coming soon. Yeah! I have been dreaming of a cherry popsicle; how strange is that?!
I send everyone brilliant Sunrises, far horizons, and a cool drink of spring water.
Bowel sounds!!!
My 'boredom' has sent my ESR back into triple digits, caused my small joints to blossom with swelling and bright red inflammation and this morning weight bearing is akin to walking across a field of broken glass.
HOWEVER! This too shall pass. My blood pressure remains stable, my BUN/CR level are normalizing, and I have faint bowel sounds in my upper left quadrant. That drink of water is coming soon. Yeah! I have been dreaming of a cherry popsicle; how strange is that?!
I send everyone brilliant Sunrises, far horizons, and a cool drink of spring water.
[/QUOTE]
Can't wait until you can toot your own horn*gurgle gurgle*
I had my ankles/feet and wrists/hands injected this afternoon and can pace, albeit it slowly without that broken glass instead of bones feeling and managed a short session on the stationary bike.
Be well everyone and thank you for keeping me in your thoughts and hearts. It promises to be a lovely Moon rise tonight, and I have a window to watch it through.
Shug, I'm gald you are feeling somewhat better. Keep it up, you're in my thoughts. Street Clothes down...maybe a cherry popsicle today! Hope your wish comes true! Feel better and keep us posted!
I hope your moon rise was lovely! Today is another day to send goodvibes to you for a long cool drink!!
Breakfast: two ounces of cold water! My mouth and throat are so parched the water burned like fire and my jaw twinged in sympathy. But it was water and it was wonderful.
YAY!!! I'm so happy!! a wee baby step.. but a step just the same!!
****HUGS***
Shug, your news has brought tears to my eyes! This is the best news I could have! I am so happy for you and it all brings you a step closer to home (and maybe that cherry popsicle)!
I am enjoying my visit with my son, but had to pop in just to check in with you and you have made my day! Did you get your comfy clothes? I will check on you tomorrow.
Shug, I've been missing in action with a computer change. This is great news........a sip of water for a parched throat. Hopefully, all is well now a couple of hours later. It sounds as if you're on schedule and that's great news. Hugs, Lindy
[QUOTE=Spelunker]Breakfast: two ounces of cold water! My mouth and throat are so parched the water burned like fire and my jaw twinged in sympathy. But it was water and it was wonderful.
[/QUOTE]
Bottoms up!
The PT has started a course of "balance training" and yesterday he sent me a link to >>this article<<.
I am going to faithfully stand on one foot, or the other, while I clean my teeth and wash my face. My ankles are a constant source of discomfort and anything to improve them is worth the silly postures.
Finally! the cherry popsicle. It was sooooooooo good. Then even better was that four of the six IVs that have been running have been discontinued and I have been given access to the hallway for walks. I will have to wear a mask and an "isolation" gown, but will have more space that this small room in which to pace and regain my very depleted physical strength.
Yesterday I was told that once I am released I will need to be seen daily for at least a week. My beloved sister is going to come here, find us a place to stay (the hospital has a list of HD friendly rental places) and cart me back and forth to the outpatient clinic. THEN, when I am ready to go home my brother and sister-in-law will come with their motor home and drive me and all my paraphernalia from north central AZ to the far corner of southeast AZ.
Plans! aren't they wonderful?
Shug that is marvelous news!!!!! I'm so happy for you. I hope you continue to rebound at a quick pace! Your mention of a cherry popsicle the other day starting a craving for one myself- so I bought a box but I haven't touched them. Tonight after supper I will have one and make a toast to you.
Huggin ya!
I have been experiencing 'ghost pains', feeling as if my bladder is full and the urge to urinate is so overwhelming it brings tears to my eyes and will awaken me out of sound sleep. I now have a whole new understanding of the pains amputees experience.
However, tomorrow is another day and I will find other small things that I have taken for granted in the past but will not longer.
Thank you one and all for your support and good wishes. I simply do not have the words to express how much each post from you in this self-indulgent topic means to me.
Shug,
I AM doing better!
[/QUOTE]
Party on!
Great, big, huge {{{{
Just wanted to check in a say hello. Me too! Hope you had a good day!
Hi everyone. It has been a rather indigo day, at least emotionally...no reason, just feeling teary and blue. So, I closed the door, pulled the shades and enjoyed an afternoon of feeling gloriously sorry for myself; practiced my swearing, and then spend far too long in the shower.
Pain management is acceptable and with the reduction in IV steroids I am sleeping better, but am still awaken often during the night. I really NEED to go home! I keep soothing myself with the ol' "soon, soon."
Now I have a bowl of sliced fruit to enjoy and undoubtedly that will make me feel better all over.
Thanks for asking!
Waddie, according to what the "team" has told me, it may be several weeks until the increased dosage of Enbrel can be seen as effect or ineffective: yes, I am taking 25 mg MTX and just added 20mg of Arava/day back to the combination.
Lindy, ah, the very fond memories that I have of being an undergraduate on the Reno campus of the University of Nevada and the joys of being a perpetual student.
Let me see if I can provide a brief synopsis of the pre-discharge planning that took place yesterday afternoon. I had asked for, and received, perfect candor from each of the participants. Some of it was optimistic, but most of it was realistic. With only one partially functional kidney, HD will be my lifelong companion, albeit it that the plan is to gradually reduce the total daily hours from 24 to 18 (which still effectively removed any possibility of returning to my job-of-work even on a part time consultant level). The levels of RA discomfort/and the escalating pain of secondary, systemic amyloidosis that I am experiencing can only be partially tempered with either oral or injectable analgesics. With that contingency being on the table, so to speak, the pain control team has recommended an “IT trial”. IT=Intrathecal Pump. >>deep sigh<< one more decision to be contemplated on the RA journey.
IF, big if, we (Bob and I) decided on the trial, it will mean being hospitalized an additional week. However, that additional week would mean I could be discharged from the hospital and go home! Bob is going to come up here tomorrow and that will give us some face time to discuss all this.
The neurosurgeon and the neuro-psychologist stressed, over and over, that even with a fully functional, well-calibrated IT, pain is not eliminated totally, it is merely made manageable. I understand that and long ago realized that pain, in some form or degree, seems to be part and parcel of the ageing human body. I am not seeking the elimination of all pain, simply the ability to live my life without being immersed to my nostrils in pain; I am not looking for an existence without pain of any kind—after all pain is the warning sign that something is amiss and needs attention soonest—rather I am looking for the ability to arise from bed unaided, to clean my teeth, wash my face, brush my teeth and toilet without tears of frustration. I am not seeking oblivion, I am looking towards the possibility of life lived to the fullest! To the fullest, whether than be ten months or ten years!
I am not a very good decision maker, so this is all rather flummoxing. No, not rather, completely!
Oh...my...THAT is certainly NOT the impression I have gained from my meetings with the members of the pain clinic. Make a buck? Gosh, Milly, that really makes me sad and discourages me and makes me wonder if it would not be better for all of us if I ceased to post in this topic. That was kinda like a swift punch in my solar plexus: it took the wind right out of my lungs and made me sick to my stomach.
However, thank you for your honesty.
Oh is it the same as the pain pump they put in my leg after surgery? I still had to take vicoden when I had that. Now they have all of those class action law suetes. What is best for your partially working kidney. Have they discussed getting you a new kidney? Or do they think that your partially working one is going to get better?I am sorry. I was trying to be silly not insulting. I know they are trying to help. I just wonder if this is an old gadget or a new and improved one. I would honestly consider it myself if I knew someone that had tryed it and they had good things to say about it.Sorry for all of the stupid questions. I googled it. Intrathecal Drug Pump. It does not use much medicine that is a good thing because it delivers the meds to your spine. Well that is a big plus. So you should not feel woosie from the meds I would think. They do actually test for pain results by injection so they can tell if it will help or how much you need first. Yes it is totally different from the pain pump I had after surgery. Sorry if I upset you. It looks to be very benifical. I would think I would like it because I get alot of spine pain. The world is such an ever changing world with new things daily. It is sometimes hard for my old mind to keep up with all of the new technoledgy. I guess it said you can not teach an old dog new tricks. This dog just likes to ask a lot of questions first. If you decide to get this please let us know how you like it. Again I am sorry for typing without thinking. I was still in my morning fog waiting for the caffine to kick in.
Trust the good sense and strong will that has gotten you this far and the decision will be made to your benefit. I so look forward to your first posting from home! Many, many hugs to you...
[quote=milly]Well the pain pump. Idk? Maybe kind of nice. Seems everyone is trying to get in on the action and make a buck.[/quote]
Milly, I truly hope that you do not think that I am so uninformed and lackadaisical about my medical treatment, my prognosis, and my body that I would stand for anyone using me to “make a buck”. I am a relatively intelligent woman who is very well informed not only about RA, but now also about amyloidosis. I am my own best advocate and although someone might be able to take advantage of me, it would not be for long. Further, I do not believe, not for an instant, that the several doctors and ancillary personnel sitting in that room yesterday are part of some scheme to “get in on the action” associated with my chronic diseases and the pain that can be attributed to each to “make a buck”.
I am, I admit, rather fragile right now and your throw-away assessment of my situation felt, as I said, like a punch in gut and I missed the intended humour. I accept your apology and appreciate you offering it, but it will, I think, take a few days to work through the emotions connected with your assessment.
[quote] I sort of like to be in control of my pain. Some days I take three pills and some days four over the course of a day. Try to keep at at three.[/quote]
Milly, you are extremely fortune that you can be in control of your pain with pills. Good for you.
[quote] Seems I have been hearing more about this pain pump latelly. What is in it? Morphine or what?[/quote]Yes, carefully titrated doses of morphine delivered directly to the spinal canal to treat chronic pain and to enhance the quality of life.
[quote] I wore the patch for thirty minutes once. I was supposed to leave it on for three days. I felt drunk and my lips went numb.[/quote]
One of the purposes of the proposed IT trial is to avoid such complications.
[quote]Would hate to put something in and find out I did not like it. Decisions decisions. I would put up a thread and take a survey. See if anyone else has one and if they like it. Also I would ask for a sample dose by IV or what ever to try it first. I like to kick the tires before I buy the car.[/quote] While I am not sure I would compare it to kicking the tires of a car, the phrase was “an “IT trial””. Trail, as in a