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Richard

5 months since kidney surgery

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Hello all.

Fist off, THANK YOU for being here, to the Trust and to the members who have contributed. Not really specific as to why I finally joined (been reading here for months), but at this point, this site seems to be the one place I feel comfortable/reassured, coming to... Thank you again for that! (Apologies in advance for what I fear might be a lengthy post. I hope to gain support and advice by joining and posting, but most importantly, I want to share back to those that (like me), are visiting here without registering and (like me), wondering what is going on.)

Background:

65yrs old, used to be fairly active, emergency Kidney surgery mid September (It's now mid February), for several kidney stones in both kidneys (one was almost 1" long!). At time of surgery, my kidney function had dropped to 15%. Hospital stay for one week where many blood cultures and other procedures were done to isolate infection source.IV antibiotics. Last hospital stay (November 1st), was to have the other kidney sonic blasted to dissolve remaining stones. Followup with Urologist last month confirmed I was kidney stone free. When I asked him about my severe lower back pain, I was told it was due to lack of exercise. I agreed, since I had gained a lot of weight just laying down all day.

Note: Reviewing my history of symptoms, I now realize that my Sepsis symptoms started a year prior to surgery. I was experiencing increasing lower back pain, but nothing radiating to my sides to indicate that it was my kidneys as well as fatigue and memory loss. I thought it was just due to working too long, too hard formany hours a day without exercise. In September, my wife found me laying on the floor unable to get up. Against my wishes, she called 911 and had me rushed via ambulance to the hospital. (I thank GOD for her, as she truly saved my life.)

Several weeks after surgery, experiencing many Sepsis related symptoms, she printed out the material from this site. (She found this site much earlier as part of her way of taking care of me but was apprehensive to share it with me for fear my depression might get worse.) In reality, reading that so many here were experiencing the same symptoms, I started feeling better about what I was experiencing realizing that I was not along, or going crazy, of being "lazy" for wanting to remain laying down all day while my wife left for work each day. (BTW: My wonderful wife has been the most supportive person I have ever met and I count my lucky stars to be with her!!!) I still come back here to read... even if it's a post I've already read... just as a reminder.

My GP has no real knowledge of Sepsis. My endocrinologist (T2 diabetes), is knowledgeable, but I still don't feel like I'm getting as much help as I'd like. I'm seeing a physical therapist for my back pain but he has no knowledge of it and just tells me to stop being lazy and exercise. I'm now searching for another GP for help.

QUESTION:

Does anyone here have any experience with Vitamin B12? I just started taking oral B complex vitamins yesterday after reading a LOT about it. Hoping for more energy, better cognitive /nerve and pain free experiences.

CURRENT SYMPTOMS:

MAJOR Exhaustion/Fatigue! Not just 'wanting" to go lay down, but after sitting up and performing minor tasks I HAVE to go lay down and rest. When I do lay down, I'm unaware that I just "pass out" and wake up a few hours later, clueless as to "what happened".

Memory loss: short and long term as well as inability to speak the way I used to. Like others, I'll start talking and after the first syllable or word, I experience a "train wreck" in my mind. My thoughts and sentences are there and ready to come out and communicate but I find that I have to think a lot before I speak and my vocabulary has dwindled down to nothing compared to what I used to have. Sometimes I'll begin to speak and after the first syllable, I'll complete a "new, never before heard of" word and just break down in tears. If it's with my wife, I can sometimes laugh at myself while my wife looks at me with reassuring eyes and reassures me that I will get better.

Pain! Leg, arms and lower back. My "personal best" for walking is now 6 MINUTES on a treadmill (Once!), AFTER starting physical therapy. I can stand for maybe a minute or two at best. My ability to sit up has improved to maybe a few hours.

Hair Loss and dry scalp. At first i though maybe I wasn't washing my hair enough as I'd scratch my dry scalp and pull out what I though were "white heads/pimples". I started looking closely and realized they were hair follicles with hair attached.

Breathlessness... Not being out of breath as if I have been running, but just sitting up from laying down, going to the bathroom, making my way back to bed.

(I know I'm experiencing more  symptoms , but I "can't remember at the moment")

I've read here and have been told by others, that I just have to 'go with the flow" and rest... Reassuring and I try hard to follow what my body is trying to tell me, but having a hard time following this advice... I just want to get better! Researching all that I can (hence my question bout B12... BTW: I asked my GP for b12 shots. She had me tested and my results were right in the middle, so she wouldn't prescribe them for me and why I'm now seeking a new Sepsis knowledgeable GP.) I've read just about EVERY thread here, sometimes repeatedly as a reminder of what I'm really dealing with... Also reassuring! Thank you again!

I can say that I have improved over the past few months, but it just doesn't seem enough. I used to be a firefighter (helicopter rescue), and VERY familiar with trauma associated Septic Shock, but before my experience, never knew or understood Sepsis. I now understand, especially realizing that 85% of my urinary toxins were being pumped back into my blood system for a very long time. I just have a hard time embracing and accepting it... It's not like dealing with a tangible trauma.

I do know that I'm VERY lucky to be alive and very grateful for it. I do see my improvement and I'm very grateful for that too. I feel guilty (especially after reading other member's experiences that are far worse then mine), that I'm still not satisfied and want to feel better.

I guess that's it for now.

Thank you so much for reading and THANK YOU SO MUCH for your posts here. THEY HAVE HELPED ME TREMENDOUSLY!!!

Best,

Richard

 

 

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Hello Richard, welcome to forum.  your current symptoms are something that i and many others im sure can identify with and sound quite normal considering what you have been through.i also arrived at sepsis via what was thought to be a kidney infection post surgical .its taken me along time and with a great deal of resistance on my part to come to terms with sepsis and what that actually means for me as far as recovery/timescale is concerned bearing in mind that no two patients or recoverys are exactly the same i have read as much as i can both on and off this forum and would encourage anyone to do the same. this forum and the help of other members have helped me to manage my expectations in that regard. recovery will come although this can be painfully slow at times, you have been through so much over the past few months so in that sense its still early days, we had some great support from the sepsis nurses on here i know you cant phone them but im sure you could email them, they were very helpful to me and my wife.at the risk of repeating what you already know...give yourself the time that you need...be good to yourself....rest when you need to.....take whatever help is available.just one step at a time.

wishing you recovery.

kind regards ian

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Ian,

Thank you so much for your response. I came here not wanting to hear" it will take time... just rest"... I'm smiling hearing you share this as, something I still haven't grasped, is that it really is relatively early regarding recovery... (Hard to accept as with most of my life including designing prototypes, the thing most people respond with is: "You accomplished THAT in how long?!?!?! referring to projects that would normally take others, much longer... My personality, skill sets, intelligence ext had always lent myself to getting a lot done fast... I am realizing that I am applying these same expectations to recovering from Sepsis... (Sigh... and quietly laughing at myself.)

I think the biggest impact I received from your response was that I am "still in my early days"... That sunk in... Thank you!

Part of my frustration is dealing with my primary doctor, who although knows "about" Sepsis, is not really equipped or willing to help as much as I ask... (Wouldn't try vitamin B12 shots because my B12 results were right in the middle.) She wouldn't consider the circumstances or symptoms. My endocrinologist is very knowledgeable and wants to help but can't because of office protocol... she told me to seek help from my previously mentioned primary care doctor... My new physical therapist is a "sports-related" physical therapist, very masculine and tells me to just suck it up and points out that I'm not trying (after going to tears after 6 minutes on a treadmill because of the pain).

I have an appointment tomorrow morning with a new primary care doctor at a new clinic (leaning more towards holistic medicine who understands Sepsis and is willing to follow my lengthy research to try B12... She also suggested rapid/aggressive weight loss injections as she sees my physical limitations hampering my exercising to loose weight and the extra weight I've gained since September getting in the way of my physical therapy trying to reduce pain. (Sure sounds like a quite a circular, never ending circle of dead ends... I'm praying that tomorrow will be a new beginning... even if it doesn't work, at least I feel mentally more optimistic about trying something different.

I will most definitely report back in with results from my efforts (B12 etc...). Hopefully the results will be positive and may offer hope to others here... Even if it doesn't work, it's still something to share along with everyone is different and what might not have worked for me, might for others.

Again Ian, Thank you for sharing!

You: " at the risk of repeating what you already know...give yourself the time that you need...be good to yourself....rest when you need to.....take whatever help is available.just one step at a time."

This struck a positive and encouraging chord and put a smile on my face.

Best,

Richard

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Update:

I went to the new GP. Feeling better with her. She knows a "little" about Sepsis, but was eager to receive the handouts from here to study and learn more.  She agreed to the B12 shots and another to help with weight loss (Considering my inability to exercise)> Was shocked at how much better I felt within 6 hrs of the shots! I thought it might be a placebo thing (I want it to work, therefore, my brain tells me it is working), Either way, I'll take it (I know the mind is a powerful thing and can (to some degree) heal ourselves.) The next day, still felt a little better, but several days later, I'm feeling the same as before. Going in on Friday for another B12 shot. She asked me a lot of questions no one else had before (This after handing her all my test results and blood work results). She ordered more blood work for things no one else had investigated, and I'm happy for that.

I've been pushing myself doing exercise and yesterday, I sat up after doing some strenuous stretching and got REALLY dizzy, the room was spinning, to the point that I got scared. I laid down and felt better, but I sat up several times since and still had some dizzy feelings.

I talked with my physical therapist about how very disappointed/frustrated I was about his not understanding Sepsis and accusing me of not trying hard enough. We settled that issue (I really had to set my foot down hard and fight for my position.). He had me try something when I walked: When my back pain came on, to lean over with my hands on my knees and rest for one minute and see if I could walk again with out pain. If the pain dissipated, there was a good chance my pain might be coming from a bone spur. Well, I tried, but so far, I really can't tell.

I cam back here reading more, searching for more key words like "Fatigue". I had associated my using and identifying with the word "Fatigue" as being lazy... After reading more here this morning, I'm starting to accept that my experiencing fatigue is part of the post sepsis condition. I will tell him today and see what happens.

I'll report back when I learn about the new lab results (My feeling about the new blood work, is positive, searching for other "possibilities" to rule out or look into.

Still frustrated... Counting the time since my last surgery it's been 3 months and almost 4 weeks. Based on my readings here, this is considered a very short time period, so that's tempering my frustration. My wife accepts the fatigue and points out all that I've accomplished since my surgery. Since the beginning of this year, I've completed 4 new prototype projects and have earned almost the same as I did within a two month period as before this whole ordeal. Not a great way of measuring "recovery", but I can identify with it and seeing this is helping me lower my frustration levels. I have a deadline this coming Friday and it's going to be tight, but I'm promising myself to pace myself no matter the stress level to meet this deadline.

I recently watched a documentary on Netflix (The Chef's Table), with an episode on the Chef Sean Brock... One of our favorite Chefs... We saw a video on him a year ago and all I could think of was "I want to be like him!" Well, as it turned out, I WAS like him! I LOVE what I do for a living and always joked about what do you do for fun/relaxation  when your work derives me so much "pleasure"... Well, he came really near death working so much ("Because he "LOVED" what he did!). It hit home so hard!!! I saw myself like that and coming so near death (still hard to accept), and fell into tears for a few hours.... Still taking long breaths and thinking carefully about how hard I push myself...

Thanks again for being here...

I'm going to read a little more this morning and then get back to work, being grateful that I "can".

Best,

Richard

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Hi Richard

thanks for the update. sounds like your asking lots of questions which is good, but please dont be disappointed with yourself in any kind of way, try to bear in mind what you have been through. It took me a long time to understand the difference between tiredness . fatigue .and exhaustion. and post sepsis i was exhausted in a way i had never been before.

i can really understand your frustration. but try not to push  yourself too hard at this stage  if its leading to diizzyness  at that point we start to risk injury and all that can mean.Really glad you put your foot down about not trying hard enough, i have met many doctors who dont seem to know much about sepsis let alone physios.

wishing you recovery.

kind regards ian

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Thank you Ian,

Kind of smiling here. Just got up from laying on the couch. My deadline to complete my project today, got pushed to Friday, so I thought I'd take a break knowing I had more time. Still filled with guilt (working on it, but admitting it so others who might feel the same way can get an example of how knowing about something, doesn't mean we can easily live it out (like taking it easy, when all we want to do is get back to what our lifestyles used to be like.)

I DO still have such a hard time understanding and accepting the difference between "feeling like I'm being lazy", being tired, exhaustion and fatigue. Ironically, after talking with my Physical therapist, he is really supporting my understanding about feeling fatigued vs my not trying hard enough to go longer on the treadmill.

Update: The great effects I felt from my B12 shot last week feel like they've worn out. Looking forward to Friday for another. I'll speak with my new GP to ask her about this.

Thank you again!

Richard

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