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Mar 20, 2017 - 23 comments


So now that I have my Kidney and I'm no longer on dialysis I have been tapering off the Ativan I was on 1mg twice a day I''m down to 1/2 twice a day so 1 mg and should be off around this time next week I have been removing .25mg every 3 days. I do not feel too bad at all Just keeping a positive outlook on all of this and understanding it is only temporary, Then I will start tirating the 10mg methadone I'm on 5 in the morning and 5 at night. This should not take to long.
When they did the second surgery on my foot they removed 6 screws that were painful so I'm going to give it a go as I have 9 screws and 3 plates left. This should be a lil more comfortable..

Katie is doing very well I'm so Grateful and delighted ! My cut on the other hand opened up so I have to take a lil longer to get it to heal It is a drag as I want to move around. Gary is cooking and doing the housework and I appreciate it but we do not clean the same lol

I'm Grateful to be in recovery but look forward to being off these prescribed drugs You can not help but to feel like a addict when you go every month for a refill.. Although I did need them It is time to get off as a New Chapter is beginning in my Journey..

Taking care of Business.. love, lesa

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3197167 tn?1348972206
by clean_in_ks, Mar 20, 2017
You certainly ARE taking care of business!  I am truly AMAZED at you!
I am so happy to hear that Katie is doing well!!  YES!!!
But so so sorry your incision has opened up.  Is it just a small area of the incision?  I am grateful you have Gary....and that he is doing the cooking and cleaning.  He is such a trooper....and a husband many a woman would envy having.
You'll have plenty of time in the not too distant future to get things just exactly like you want them. LOL  Another thing to look forward to.☺  
It has been a month today since you wrote your journal introducing us to Katie.  I re-read it and wondered if the month of doing the pushes 3x/day in your PICC line are behind you now?  You mentioned you had to do that for a month, but medical things change day by day so that could have changed.  Do you still have to take the same unreal amount of pills each day?
I think of you each and every grateful you don't have to face dialysis any longer.  And now you are tackling a new project?  Titrating off meds.  That's why I say you AMAZE are such a do-er.
Sounds like you have a plan and are doing well.  Goals are so good for us....even if they are just small ones.  It gives us something to achieve.....and brings such satisfaction.
Remembering you daily in my prayers....and filled with excitement for this new life you and Katie have now!!♥♥
Much love,

242912 tn?1402547092
by Jade59, Mar 21, 2017
Hey Lesa...I was just coming to your page to check on you and saw your new journal.  I wouldn't have to do this if the FRIENDS FEED still existed!  Still mourning that loss.  

Ooh...that seems like a quick taper with the Ativan.  I'm not sure how long you've been on it, but a benzo is a you know.  If you're feeling well, then that's great, but you got a Lot going on honey and I worry about you getting overwhelmed with anxiety once you get lower in mgs.  You know yourself and your body best though. :)  

I remember when you had that second surgery on your foot.  I believe that's when you shared your xrays showing all the hardware.  Or maybe that was before.  Hard to remember w/o the photos and comments showing the dates.    

Sorry to hear your incision opened.  Did you need it restitched?  I hope you're not doing too much.  I sure understand needing to take it easy after abdominal surgery.  It *is* a drag, but necessary whether we like it or not.  

Ha, I know, men don't tend to pay attention to the 'details' of cleaning.  Bless Gary's dear heart though for stepping up and doing his best.  He loves you so much.  I gotta tell you, when R wipes the counter or table with the sponge, he does it in circles!  All I can think while I'm watching him, are the areas he's missed (I secretly go back and re-wipe when he leaves the kitchen, lol).  Like Gary, though, he tries his best.

Wonderful news and a relief to hear how well Katie is doing, and that you're feeling well.  It's only been a month, and you're doing Fantastic!!  Your positive attitude is admirable.  I have learned so much from you.  

Like cik, my prayers are with you daily.  Tomorrow is Wed...and your weekly trip to the city.  As always, I will be praying it goes well.  

I love you, my sweet, 'accidental' friend.  I will tell the story behind that one of these days.  I never delete Anything, so pretty sure I have the pm I sent you back in 2009 or 10.  

Love and healing hugs...♥


242912 tn?1402547092
by Jade59, Mar 21, 2017
p.s. your transplant happened more like a month and half ago, right?  You got the call at 11p Feb 12th.  I assume you had surgery the next day. xo

406584 tn?1399591666
by 10356, Mar 21, 2017

Thank you for responding and showing me how to spell lol I would never had guessed there was another t in Titrating Although it came up in sc I was to lazy to look it up lol I so appreciate it And can not fix it lol I think of Jade when I make spelling mistakes lol lol her pet peeve I think ! Hi Kola !! :)

I sure hope this finds you well today Connie..

I'm done with the antibiotic push Yeah!! It took a lot of patients for Gary and I It had to be done so slow But the Bacterial infection Katie had is gone. I'm still on 2 antibiotics a day and one 3 days a week. I take 7 rejection pills 3 antibiotics 3 different bp meds and Tylenol so I'm on about 18 pills in the morning and about 10 at night so it has gone way down I'm only on 5mg of steroids down from 30 I will remain on 5 forever.

My Gossamer filtration rate is 60 :)) They moved me to Thursdays I just got the call today.. I use to go twice a week then once a week on Mondays and Thursday blood test at home hospital. Now I was moved to thurs at UCSF because my kidney is doing so well !! 5 weeks out.. They expected me for 3 months to do this routine so Katie and I are doing remarkable well..

I'm so flippen Grateful I do not do dialyses anymore CIK It is hard to live that way Doable but difficult It is hard to keep a good attitude and force yourself forward I know why peps give up but I do not think it is in my DNA to do that The more I feel threatened the harder I dig in..

If I would give anyone advice that was in dialysis It would be to work your *** of on the good days and sleep on your dead days.. wake early everyday to feel good before dialysis and to work out clean whatever but move and eat. Get home sleep then repeat the next day. I was up every morning between 1am and 3am and would stay awake all day on good days as you fall into the routine of sleeping during the day and staying awake all night That is Depressing and works against a person..

Thank you for remembering me in your prayers I so appreciate that I think that is why I do so well Is I have all of you and my Amazing family I'm very fortunate.. Love you Connie I sure appreciate you and your Kindness. I hope you had a wonderful day at your Grand Daughters School Function and that your Husband is doing well and that you are also.. warmly and with love, lesa

406584 tn?1399591666
by 10356, Mar 21, 2017
we were writing at the same time Kola Now I need to go read it lol

406584 tn?1399591666
by 10356, Mar 21, 2017
Hwy Kola !

5 weeks and 2 days :)) Feb 12th is my anniversary You are correct !

I just saw my New Dr today she is very kind I like her a lot ! She checked my wound It is healing. I have a stress area that was giving me a hard time it is a lil triangle that finally is healing and the bottom of the wound opened about 3 inches across I put on Butterfly's and it is closing nicely. while I was changing Dr.s and looking for a new one I had done to much getting in and out of the car, That is how it opened. But I have been very patient this time around..

My attitude Kola I think anybody would have as I have been given a chance to Live to really Live. I'm so Grateful and so Humbled but so thrilled I do not think Anything will measure to somebody giving you a second chance to Live.. It is so hard to explain but I feel as if a shift has happened deep inside.

I have been on the ativan about as long as Dialysis 3 years and have kept it at the same dose I really do not feel that bad at all. I think I want off this stuff so damned bad that it is overriding any fear I have. I think it is Important to be off all things that cause dependency. I think Katie deserves that I deserve that. I promised her a good Healthy life I intend on keeping that promise.. I do have my Medicinal and I spoke to the Dr. about the CBD oil for pain, she said she heard good things although Kaiser does not approve she personally does so if I can not hang I do have alternatives.. I just do not want crap inside of me and I consider Methadone to be crap the Ativan is because I needed it for Dialysis I never needed before so I do not need it now..

I love you also Kola and I'm so appreciative your Prayers. As I said to CIK It is because of this I'm where I'm at and have Katie in my life.. warm hugs my Accidental friend that tuned into more :)) Love you !!

406584 tn?1399591666
by 10356, Mar 21, 2017
hwy Kola lol lol Hey !! :))

242912 tn?1402547092
by Jade59, Mar 21, 2017
Lol, I knew what you meant.  

Yes, you can, you can fix that spelling error.  Bring up your j, then on the right you will see 'edit'.  Click on that, then fix the heading, then any errors in your original post.  Just take your time and be careful so as not to hit a wrong key, otherwise, you will lose the whole thing.  When I edit, I copy my post for 'just in case'.  What you can't fix, are your replies after the original j. :)  

406584 tn?1399591666
by 10356, Mar 21, 2017
I did it !! Thank you Kola ! :))

242912 tn?1402547092
by Jade59, Mar 21, 2017
Yay!!!  You're welcome, Lesa, good job!! :)  

Lol, you're right, I just Hate when I misspell.  I have even gone so far as to copy a reply on my own journal, delete it, fix the spelling error, then repost.  Nope, nothing wrong with me!!!! lol

406584 tn?1399591666
by 10356, Mar 21, 2017
lol lol I fixed the title but left the rest It only bothers me in the title and on the forum other then that I'm like oh well as long as you can figure it out lol Sometimes I think I look at it and fix everything to post it and find all kinds of errors It is like Gremlins working in between !!

Thank you Kola, Cik that title being wrong would have drove me crazier :)) love and more love

495284 tn?1333897642
by dominosarah, Mar 21, 2017
Well now i feel the need to mispel things!!! lol

Ya know, i learn so much from reading your journals.  The one thing that really stood out was Jade's advice to you about lowering your dose of Ativan.  Years back that wouldnt of been her advice as she would of gone over that one.  Our girl has grown so much these last few years!!!  I hear confidence now and that to me is simply wonderful.  Connie has always brought balance and solid advice filled with love.  Lesa, there is a new found strength within you.  There is no wondering anymore as you know exactly what you want, what you need and nothing will stop you from achieving this.  I believe Katie has given this to you.  I am so humbled to be in the presence of all you beautiful women.  You give me strength and make me realize everyday that i have so much to be grateful for.  Thank you all for being a huge part in my recovery~

Much love to you Lesa, Jade, Connie and our beautiful angel Katie~

406584 tn?1399591666
by 10356, Mar 23, 2017
Perfectly said my Friend I could not add more as you captured my thoughts that I could not so I will leave this here but to say I love you and I also em Grateful you Ladies are a part of my recovery and life. Love you Connie Jade Sara, my heart to yours.. lesa

242912 tn?1402547092
by Jade59, Mar 24, 2017
Thank you for your kind words, Sara.  It's you and other friends who have given me what little confidence I have attained over the last 10 years.  I was able to post on this journal because I was having a good day.  If you will notice, I wasn't able to post on Lesa's original journal introducing Katie.  I was simply too nervous and had to write her privately.  She was sweet, kind, understanding and comforting about only our Lesa can be.  

Much love to you all...but most of all, Katie who through her unselfish act, gave Lesa her life back.  Like Sara said, Katie will always hold a special place in my heart; never to be forgotten.  I've been a donor for 30yrs plus.  I just hope someday I will be able to save someone's life and bring as much love and appreciation to a family in need as Katie brought Lesa.  ♥

495284 tn?1333897642
by dominosarah, Mar 24, 2017
You have more confidence than what you give yourself credit for.  As for Lesa's 1st journal where we found out about Katie i was nervous too.  I wasnt sure i could relay into words how i felt.  My thoughts were all over the place.  It was such a personal journal as it was about life and death.  I just started to write.  I remember feeling the same way with you when R had his accident.  All i wanted to do was make you feel better.

I am off to bed but need to check on April the giraffe first!!

242912 tn?1402547092
by Jade59, Mar 25, 2017's always difficult, if not impossible to know what to say when something as horrific as my husbands accident happens.  You *did* make me feel better, and what I remember most about you, was you there each night on my journal asking for an update.  It didn't matter what you said, just knowing you were there brought me more comfort than you will ever know.  My world had been turned upside down and life as I knew it would never be the same.  The only 'normal' I had for the next 4 months, was MH and my friends here.  I truly don't know what I would of done without y'alls support.  Praying for R, lighting candles for him.  I can never thank you enough or all my other friends involved who kept me sane through that terrible time.

Lesa...I'm glad you like your new Dr and your incision is healing.  I'm also happy to hear you're taking better care.  You don't realize until you have abdominal surgery that your abs are used for Everything.  I don't know if you saw my j, but there is also a CBD patch.  I would be surprised if any ins covered any type of of cannabis use.  Maybe someday. :)  

Accidental Friend Story:

Lesa used to have hundreds of pics up publicly.  For quite a long time...maybe a year...I would look at them for hours and hours late at night after MH got quiet.  One night my cursor was hovering over the 'friend request' when suddenly my finger spasmed and clicked the request button.  I was familiar with her posts on the SA forum, but we did not know each other.  I was mortified thinking she probably thought 'who the hell is This chick?!'.  I quickly wrote her a pm apologizing for the invite telling her how sorry I was and how I had accidentally hit the friend request w/o meaning to.  Lesa was gracious, kind, and comforting... as we all know she is.  So that is the story and why I call her my 'accidental friend'.  We are much more than that now (as she so sweetly said above) for which I am grateful.  It was fate. :)    

317787 tn?1473362051
by Dee1956, Apr 03, 2017
Hi there! I just saw this, I'm sorry to be late. You are really amazing! Titrating off a benzo and methadone is a big job.
I admire you so much. The benzo's are difficult to do.

I was on xanax, had been for a very long time when all of a sudden, my doctor decided that it was too much.
I was lucky in that he told me how to do it and when.  I slowly went down from .50 to .25 then 5 a day down to 2.

I don't know about methadone but can imagine it is like other narcotics so my hat is off to you deal Leesa and say a special hello to Katie too :)

I hope your hand and stomach are healing well.

Praying for you!

406584 tn?1399591666
by 10356, Apr 05, 2017
Yes it was Fate Kola.. love and more love

Thank you Dee I appreciate you writing with support ! I hope your shoulder and back are feeling better !!

I have never came off a Benzo before I have now and it makes you feel weird. The immunity drugs I take make me feel a ton of anxiety and make me shaky On top of removing the ativan Now I.m down too .5 methadone I fee a lot of anxiety It takes a lot to post due to this anxiety but I will override it as I realize it is in me head and the drugs. When they lower the dose of immunity drugs this side effect should lessen but as it is I'm adding to it with the taper. This too shall pass :))

Thank you all of you I so Appreciate your support even thou I definitely feel weird ! :))

I want to feel the wind on my face I want my eye's to be filled with splendor I want to fly with the eagle I'm content in my desires and confident in my war... letakos

317787 tn?1473362051
by Dee1956, Apr 05, 2017
Hello there! Well aren't you just a sweetheart to remember I was in pain. Thank you! I went to a massage therapist and after one long visit, I can lift my arm above my head. It was a miracle! Magic, after 4 or 5 years I could finally lift my arm.

I have a friend who went through a liver transplant. She said that the cortisone made her very anxious. At least I think that's what it was, it could have been one of the anti rejection medications.

You are amazing. I admire you for going so fast to get off everything.  I'm sure you are doing with your doctor, it just seems so fast.  From 5 mg to .5? You are a rock star!
I'm very proud to know you.
Take care!

I love your last sentence, reminds me of feeling free, at the beach with the wind blowing in my face, nothing like it in the world.

406584 tn?1399591666
by 10356, Apr 07, 2017
I'm really Happy for you that you no longer have the pain in your shoulder. I had a shoulder replacement so I have a idea of how you suffered. May the Creator keep you Pain Free..

I did not drop by 5mgs at a time I would have if Katie were not on board but I have her to consider so I have been dropping 2.5mg Once a week.. It leaves me dealing with the anxiety and other nagging symptoms but it is safer for us. If things were different I would have walked off by now as this is annoying lol

I think I'm over the ativain so just dealing with the methadone. I take steroids 5mg everyday  and 2 other Immunity drugs.

Thank you for your Kind words Dee, I appreciate your support and yes my new Dr. knows what I'm doing as does UCSF

Your last sentence makes Me want to go to the Ocean lol :)) warm hugs

3197167 tn?1348972206
by clean_in_ks, Apr 07, 2017
Keeping you and Katie close to my heart, Lesa♥
You are such a determined, brave woman.  Sounds like you are done with the Ativan...YEAH YOU!!!
And half the dose of methadone?  The steroids and immunity drugs certainly add to how you're feeling.  Your little body is wondering what you be doin' to it, Mama!!  LOL
I was wondering this morning how you were doing.  And boom!  here's an update.  
I thank you for posting even when you don't feel like doing so.
And I think of you and pray for you EVERY single day.  Love, love and more love, Lesa girl♥

406584 tn?1399591666
by 10356, Apr 10, 2017
Thank you Connie I appreciate your support I really do. The anxiety and confusion I felt with the ativan wd was really difficult I had no idea it would effect me in the way it did I had a idea but to experience it is a whole New ball game. I would never recommend as fast as a taper as I did. My reasons were that I would need a new refill and I refused it so I worked with what I had. What I did have going for me was I had experienced many wd's so I knew it was temporary but wow what a mind screw.

Right now I'm dealing with No sleep This I believe is the Methadone being cut every week and the removal of the ativan. I'm using CBD as a aid and for pain relief this has also been cleared with UCSF although my Dr. agrees this is a good way to go Kaiser will not recognize it as they have zero tolerance.. A threat to their Pharmaceutical.. (Money for Heath)

I feel tired but it is good to have my minf out of that confusion it was a lil scary.

Thank you again CIK Please know I keep you and your Hubby in my Prayers. love back Connie with warm hugs, lesa

406584 tn?1399591666
by 10356, Apr 14, 2017
I wanted to write this as I do not want to forget. I have anxiety I believe it is a normal amount for most of us deal with it, the reason I was put on the ativan was my bp was 220/110 the Dr. at the time diagnosed me with anxiety That was when I was loosing my kidney. I had no idea I was experiencing this but it did help my bp..

I have more then 1 friend with a anxiety disorder, this is different then everyday anxiety, I have found thru the wd of the ativan Just what constant anxiety felt like.. It was a nightmare I shook on the outside and buzzed on the inside I was agitated and would over react to stimuli.. It was very disconcerting My stomach was in knots my thinking was not clear. If this is what constant anxiety feels like My heartbreaks for my friends. I can not imagine how one would deal without medication..

The type of anxiety I have is not perpetual It is focused Like when I post personal stuff, I may have a anxiety attack but it diminishes Our riding in heavy traffic things like this, but I have come to believe those with anxiety disorder feel this way constantly. I just really feel for anybody that deals with this terribly debilitating disorder.. May the Creator show mercy and comfort..

I have learned something thru this and I'm Grateful..

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