Forum Replies Created

Page 1 of 2
  • karene

    Member
    March 14, 2007 at 9:11 pm in reply to: Prickly skin symptoms

    Thanks Tim for the great site on Baking Soda!
    Thanks Patricia for reminding me to remind my Dad to have his B12 checked. He does not have his balance like before the surgery and maybe this is the cause… who knows… but worth a check!
    He is having a little numbness in his feet and they get cold as well as his hands. He was worried about diabetes which runs in the family, but I found that this could be a side affect of chemo.
    Tim, I hope you solve your prickly sensations…. if I find anything on the internet I’ll let you know.

    Karen E.

  • karene

    Member
    March 7, 2007 at 5:40 pm in reply to: 2 months post-op complications

    That’s exactly like my Dad – Go to ER – On an IV – Fluids made him re-hydrated, whatever else they gave him to reduce the high potassium – Ate great in ER, Hospital – went home and within days was back to being dehyrdated, not eating, tired, etc…

    High Potassium is very dangerous! Please make sure the doctor does the correct tests and does not dismiss the Metabolic Acidosis. My Dad’s surgeon was one of the best in our area for neobladders, but when my Mom called again and again and told the surgeon’s nurse how my Dad wasn’t eating, lethargic, etc… and they even saw him two days before he was admitted to the Hospital for dehydration – they didn’t catch this. When I spoke to the nurse about the Metabolic Acidosis, she said that she had worked for the surgeon for 10 years and this never was a condition that came up!!!!!!!! So…. make sure they get your Mom the care she needs. This could be damaging her kidneys and heart! That’s why my Dad had to see a Cardiologist as well as a Nephrologist to get everything under control and treated.

    Good luck and let us know what the outcome is.

    Karen E.

  • karene

    Member
    March 7, 2007 at 3:11 pm in reply to: 2 months post-op complications

    The information below is all about Metabolic Acidosis and is from the Wikipedia site: http://en.wikipedia.org/wiki/Metabolic_acidosis

    It may help …. Please get checked immediately if you think you have this!
    Karen E.

    Signs and symptoms
    Symptoms are aspecific, and diagnosis can be difficult unless the patient presents with clear indications for arterial blood gas sampling. Symptoms may include chest pain, palpitations, headache, altered mental status, decreased visual acuity, nausea, vomiting, abdominal pain, altered appetite (either loss of or increased) and weight loss (longer term), muscle weakness and bone pains. Those in metabolic acidosis may exhibit deep, rapid breathing called Kussmaul respirations which is classically associated with diabetic ketoacidosis. Rapid deep breaths increase the amount of carbon dioxide exhaled, thus lowering the serum carbon dioxide levels, resulting in a compensatory respiratory alkalosis.

    Extreme acidosis leads to neurological and cardiac complications:

    Neurological: lethargy, stupor, coma, seizures.
    Cardiac: arrhythmias (ventricular tachycardia), decreased response to epinephrine; both lead to hypotension (low blood pressure).
    Physical examination occasionally reveals signs of disease, but is otherwise normal. Cranial nerve abnormalities are reported in ethylene glycol poisoning, and retinal edema can be a sign of methanol (methyl alcohol) intoxication. Longstanding chronic metabolic acidosis leads to osteoporosis and can cause fractures.

    [edit] Diagnosis
    Arterial blood gas sampling is essential for the diagnosis. The pH is low (under 7.35) and the bicarbonate levels are decreased (<12 mmol/l). In respiratory acidosis (low blood pH due to decreased clearance of carbon dioxide by the lungs), the bicarbonate is elevated, due to increased conversion from H2CO3. An ECG can be useful to anticipate cardiac complications.

    Other tests that are relevant in this context are electrolytes (including chloride), glucose, renal function and a full blood count. Urinalysis can reveal acidity (salicylate poisoning) or alkalinity (renal tubular acidosis type I). In addition, it can show ketones in ketoacidosis.

    To distinguish between the main types of metabolic acidosis, a clinical tool called the anion gap is considered very useful. It is calculated by subtracting the chloride and bicarbonate levels from the sodium plus potassium levels.

    Anion gap = ( [Na+]+[K+] ) - ( [Cl-]+[HCO3-] )

    As sodium is the main extracellular cation, and chloride and bicarbonate are the main anions, the result should reflect the remaining anions. Normally, this concentration is about 8-16 mmol/l. An elevated anion gap (i.e. > 16 mmol/l) can indicate particular types of metabolic acidosis, particularly certain poisons, lactate acidosis and ketoacidosis.

    As the differential diagnosis is narrowed down, certain other tests may be necessary, including toxicological screening and imaging of the kidneys.

    [edit] Causes
    The causes are best grouped by their influence on the anion gap:

    [edit] Increased anion gap
    Causes incluce:

    lactic acidosis
    ketoacidosis
    chronic renal failure (accumulation of sulfates, phosphates, uric acid)
    intoxication:
    organic acids (salicylates, ethanol, methanol, formaldehyde, ethylene glycol, paraldehyde, INH, toluene)
    sulfates, metformin (Glucophage®)
    massive rhabdomyolysis
    The Mnemomic MUDPILES is commonly used to remember the causes of Increased anion gap metabolic acidosis.[1][2]

    M-Methanol
    U-Uremia
    D-Diabetic Ketoacidosis
    P-Paraldehyde
    I-Infection, Iron, Isoniazid
    L-lactic acidosis
    E-Ethylene Glycol, Ethanol
    S-Salicylates

    [edit] Normal anion gap
    Causes include:[3]

    longstanding diarrhea (bicarbonate loss)
    pancreatic fistula
    uretero-sigmoidostomy
    RTA
    intoxication:
    ammonium chloride
    acetazolamide (Diamox®)
    bile acid sequestrants
    renal failure (occasionally)
    It bears noting that the anion gap can be spuriously normal in sampling errors of the sodium level, e.g. in extreme hypertriglyceridemia. The anion gap can be increased due to relatively low levels of cations other than sodium and potassium (e.g. calcium or magnesium).

    [edit] Pathophysiology

    [edit] Compensatory mechanisms
    Metabolic acidosis is either due to increased generation of acid or an inability to generate sufficient bicarbonate. The body regulates the acidity of the blood by four buffering mechanisms.

    bicarbonate buffering system
    Intracellular buffering by absorption of hydrogen atoms by various molecules, including proteins, phosphates and carbonate in bone.
    Respiratory compensation
    Renal compensation

    [edit] Buffer
    The decreased bicarbonate that distinguishes metabolic acidosis is therefore due to two separate processes: the buffer (from water and carbon dioxide) and additional renal generation. The buffer reactions are:

    H+ + HCO3- <--> H2CO3 <--> CO2 + H2O
    The Henderson-Hasselbalch equation mathematically describes the relationship between blood pH and the components of the bicarbonate buffering system:

    pH=pKa + log [HCO3-]/[CO2]
    Using Henry’s Law, we can say that [CO2]=0.03xPaCO2
    (PaCO2 is the pressure of CO2 in arterial blood)
    Adding the other normal values, we get
    pH = 6.1 + log (24/0.03×40)
    = 6.1 + 1.3
    = 7.4

    [edit] Treatment
    A pH under 7.1 is an emergency, due to the risk of cardiac arrhythmias, and may warrant treatment with intravenous bicarbonate. Bicarbonate is given at 50-100 mmol at a time under scrupulous monitoring of the arterial blood gas readings. This intervention however, is not effective in case of lactic acidosis.

    If the acidosis is particularly severe and/or there may be intoxication, consultation with the nephrology team is considered useful, as dialysis may clear both the intoxication and the acidosis.

  • karene

    Member
    March 7, 2007 at 5:23 am in reply to: 2 months post-op complications

    Do you know what your potassium level is or was in the ER? Both times my Dad was in the ER the potassium level was WAY high and they “cleaned him out” to get this to come down.

    When you were in the ER, what treatment did they do?

    All ER docs and all other very qualified docs did not catch my Dad’s Metabolic Acidosis. When I found out this could be the cause of his problems, I called immediately. He was still released from the hospital even though one of the doctors said it could be the problem.
    Since it was going to take about 4-5 days (over a weekend) to get to the Cardiologist and Nephrologist (kidney doc) I told my Dad to start dissolving 1 teaspoon of baking soda in a glass of water at night and drinking it (read this on the internet). My Grandmother did this for years, so I didn’t think this could hurt. When my Dad finally got to the kidney doc, he asked if that was that all he was taking… that he did need more. He was put on pill form of baking soda – sodium bicarbonate. Within a day or two he was a new man!

    Make them check for this! I would figure that if they disrupted your bowel, maybe that could disrupt the electrolytes in your body for an electrolyte imbalance – something that pointed me in the direction of metabolic acidosis.

    Take care,
    Karen E.

  • karene

    Member
    March 2, 2007 at 9:07 pm in reply to: Can’t eat, nothing sounds good

    Hi Tim,

    Please read my posts on this thread about Metabolic Acidosis.  Your friend may likely have this.

    http://blcforum.com/cgi-bin/forum/YaBB.pl?num=1170727080

    (To the Site Admins – Maybe we could have a sticky at the top about Metabolic Acidosis ??  Please let me know if you want me to write up my posts and information.  Thanks!!!)

    Good Luck to your friend.  

    Karen E.

  • karene

    Member
    February 26, 2007 at 2:54 pm in reply to: smoking

    Hi Star,

    I need another category for my Dad – “Smoked for many years, not heavy, but consistent… then quit when I found out I had bladder cancer. Hardest thing in my life to quit and still struggling”.

    :) Karen E.

  • karene

    Member
    February 22, 2007 at 6:18 pm in reply to: First Chemo Was On 2/16

    Hi Joe!

    I just wanted to say Hang In There!  My Dad who is 73 just finished this regimen after his Neobladder surgery last July.  I told him it would be over before he knew it and it is!  Gemzar is funky and my Dad needed blood transfusions in each month.  I read this is common.  I hope you don’t need them, but don’t be surprised if they mention this.  My Dad is feeling back to normal, regaining his strength and just remember, before you know it You’ll Be Done!   :)

    Take Care!
    Karen E.

  • karene

    Member
    February 15, 2007 at 3:26 am in reply to: Suddenly loads of Mucus

    Hi Clur,
    I just thought I would add a bit of info I found for my Dad. This was in a post-op instruction list I found on-line:

    “Because the new bladder is made out of bowel it will
    produce mucus (which the bowel makes to ease the
    passage of faeces). This mucus can accumulate and
    sometimes make it difficult to pass urine. We
    recommend that you drink 2 glasses of cranberry
    juice per day as this helps to reduce the build up of
    mucus”

    Take Care,
    Karen E.

  • karene

    Member
    February 13, 2007 at 4:50 am in reply to: Help 66yr mom not recovering well from neobladder

    Sorry about the information overload – makes your mind go buggy :o
    I had to learn not to tell my Dad ALL I knew. I had copied and pasted all kinds of good info – about 8 pages – and gave it my Mom and Dad. I don’t think they read it. It was just too much for them while they were going through everything. My Dad just calls me and asks me the questions. My Dad was told about not getting the pouch too full because it would stretch out… too big ? Right now he is working on getting continent during the night and has to get up twice a night and is really happy with no accidents. He’s kinda behind the norm because of having chemo after the surgery and having to leave the suprapubic catheter in during that time.

    I know sometimes too much information is bad…. but I hope I help people to ask their doctors about metabolic acidosis and I guess give their doctors the information if they don’t know about it!!!

    Take Care,
    Karen E

  • karene

    Member
    February 12, 2007 at 11:58 pm in reply to: Help 66yr mom not recovering well from neobladder

    After I found out that the metabolic acidosis was the problem with my Dad I talked to his surgeon.  He immediately said, yes that is what he has.  When my Dad saw a kidney specialist, he said my Dad would have to take the sodium bicarbonate for life.  A member of this board who I corresponded with said her Dad’s doctor told him he had to take it for 3 months and at that time the neobladder starts acting like a “real” bladder.  It seems every doctor says something different.  When I spoke to my Dad’s surgeon’s nurse/assistant… she said she had never heard of it…. in ten years!  My Dad had no underlying condition… well bladder cancer… but every bladder cancer – neobladder patient has this.

    I will try to remember the story….

    The Neobladder is made out of a piece of intestine.  Urine can seep thru into the body.  This causes the body to become acidic and therefore metabolic acidosis occurs.

    Maybe some people are just not that acidic….  their bodies handle it better?

    This is what I found and read that triggered a disturbance in my Dad’s body due to the surgery and not due to his not drinking enough water…

    http://www.nci.edu.eg/Journal/june%202004/CAN_2.PDF
    Conclusion Our experience suggests that neobladders composed of sigmoid or ileum are good bladder substitutes and comparable to each other interms of adequate capacity with a low-pressure system. Surgeon preference, ease of construction and length of mesentery are among the factors that must be considered when choosing between them. However, sigmoid neobladders are easy to use, avoid small intestinal resection, reaches the pelvic cavity easily, and protects from met-abolic acidosis in patients with borderline renalfunction. It is noteworthy that with ileal neo-bladders, on the other hand, the patient requires medical supervision to prevent the occurrence of symptomatic electrolyte disturbance.

    From our experiences, every doctor seems to have a different story about this.  Maybe it’s too early for exacts?

    From another site and information:
    Electrolyte Imbalance

    What are electrolytes?

    There are many chemicals in your blood stream that regulate important functions of our bodies.  These chemicals are called electrolytes.  When dissolved in water, electrolytes separate into positively and negatively charged ions.  Your body’s nerve reactions and muscle function are dependent upon the proper exchange of these electrolyte ions outside and inside cells.

    Examples of electrolytes are calcium, magnesium, potassium, and sodium. Electrolyte Imbalance can cause a variety of symptoms.

    My Dad had blood tests, ER visits and no one caught this!!  The high potassium was causing dehydration which makes you nauseus and therefore not wanting to eat or drink.  High potassium can be deadly and almost caused a heart attack in my Dad.

    Here is another site and report that states that metabolic acidosis is a complication.
    http://jjco.oxfordjournals.org/cgi/content/full/35/7/391

    And yet another quote from a site:

    Metabolic disturbances may result from the interaction of urine with the absorptive surface of the bowel used for the procedure http://www.emedicine.com/med/topic3083.htm#target1

    It depends what part of the bowel is used.

    I really hope this helps.  I can keep looking through all of my saved articles I have found and read about this and post them if it is desired.

    Karen E.

  • karene

    Member
    February 12, 2007 at 3:52 am in reply to: Help 66yr mom not recovering well from neobladder

    I just posted this symptom in the other topic, but feel I should post it here too –

    My Dad did great in surgery, ate in the hospital, had a great appetite.  Was told in the hospital he had microscopic cancer in some lymph nodes.  That depressed him!  Oh my gosh… they should have someone you can talk to immediately instead of waiting for your Oncology visit.

    But … the main reason I wanted to post is Metabolic Acidosis.  Here is my post I copied from the other topic:

    “Watch out for Metabolic Acidosis.  My Dad had this and no one at the hospital caught it.  He had no appetite, It was a struggle to find things he wanted to eat.  He landed in the ER twice with high potassium – we all thought due to him not drinking enough water and becoming dehydrated.  A long story short,,, after the second visit to the ER with symptoms of a heart attack, I came home and searched the net and found that his symptoms were most likey due to metabolic acidosis.  Once he started the bicarbonate he is fine, more like great!  After each visit to the ER he was hungry, had an appetite.  After getting home his appetite slowly left…  I had him start disolving 1 teaspoon of baking soda at night before bed until he could see the kidney doctor.  Unbelievable his doctor and nurse didn’t see the signs when my Mom called on several occasions telling them what was going on.  Very frusterating!  My Dad’s situation is a little different – had chemo before – neobladder in 7/06 –  and just finished chemo after.  He is working towards getting the suprapubic catheter out soon.  He can’t wait to get rid of it! ”

    Anyway,
    I hope this helps.  After he was diagnosed having metabolic acidosis and started taking the bicarbonate pills he was a new man!  It was amazing!!!  It was such a shame to have him set back a month due to no one diagnosing this.  I heard from another person on this board that her Dad was sent home on the sodium bicarbonate.  I wondered why my Dad wasn’t.  My Mom and Dad asked the surgeon and he thought he had mentioned this as a possible side affect.   UGG AND DOUBLE UGG.  With everything you are going thru with having bladder cancer, at least they could put it in writing so you can watch out for it.

    I hope your mom feels better soon.  She has a lot of good livin to do!  :)  

    Take Care,
    Karen E.

    I had to add one more thing…. I went to see my Dad shortly after surgery, trying to think how long it was…. and he had lost a ton of weight, was lethargic, tired, weak, all of those things. I cried driving home. within a week he was in ER the first time. I hope you can pin point what’s going on. Also… my Dad was sent home on an “eat anything diet”. WHY? He should not have been eating acidic food!! With the urine absorbing thru the neobladder into the body, making it more acidic, the last thing he needed was more acid. I’m not a nurse and not a medical professional ….. just a searcher on the web for my Dad.
    Take Care,

  • karene

    Member
    February 12, 2007 at 3:39 am in reply to: leaking

    Hi Jeff, Watch out for Metabolic Acidosis. My Dad had this and no one at the hospital caught it. He had no appetite, It was a struggle to find things he wanted to eat. He landed in the ER twice with high potassium – we all thought due to him not drinking enough water and becoming dehydrated. A long story short,,, after the second visit to the ER with symptoms of a heart attack, I came home and searched the net and found that his symptoms were most likey due to metabolic acidosis. Once he started the bicarbonate he is fine, more like great! After each visit to the ER he was hungry, had an appetite. After getting home his appetite slowly left… I had him start disolving 1 teaspoon of baking soda at night before bed until he could see the kidney doctor. Unbelievable his doctor and nurse didn’t see the signs when my Mom called on several occasions telling them what was going on. Very frusterating! My Dad’s situation is a little different – had chemo before – neobladder in 7/06 – and just finished chemo after. He is working towards getting the suprapubic catheter out soon. He can’t wait to get rid of it!

    Karen E.

  • karene

    Member
    September 21, 2006 at 8:17 pm in reply to: Neo Bladder Vs Indiana

    Hello Tim,

    My Dad had the neobladder “put in” in July. I think doctor’s are not performing the Indiana Pouch as often or at all since the neobladder is “better”. Have you discussed this with your doctor and has he or she offered you both? My Dad had some set backs with metabolic acidosis but is on the road to recovery. Every doctor is different, but make sure you ask about this and are aware of it.

    I personally think the neobladder is the way to go… whatever that is worth :)

    Take care, I’ll have you in my thoughts.

    Karen E.

  • karene

    Member
    September 7, 2006 at 3:02 pm in reply to: Choosing a Neo Bladder or external bag

    Hello,
    My Dad had a neobladder “installed” on July 17th. My Dad is 72, very healthy and active before being diagnosed last October and going through 3 months of pre-surgery chemo. He handled the surgery extremely well, but has had some complications. I was going to post about them and see if any other neobladder recipient has had these complications – metabolic acidosis and constipation. Personally I know the neobladder was the best option for my Dad. He has to wear a bag while correcting the metabolic acidosis and doesn’t like the bag. Being able to void the natural way is a positive mental thing. I won’t go into the details of my Dad’s condition due to the neobladder unless someone asks… not sure if people want to know the negative side of things…. or things that can be…. everyone is different.

    Send me an e-mail or private message me. My heart goes out to you and I wish you the best in your decision and surgery.

    KarenE
    ezhome@cox.net

  • karene

    Member
    August 15, 2006 at 10:04 pm in reply to: Diet after cystectomy

    Hello,
    My Dad had his neobladder surgery on the 17th of July. he did great during surgery. He ate liquid diet for one day in the hospital and then they started him on a soft mechanical diet the day after. Then he went home.
    He didn’t have an appetite. Liquid and food was an effort as he was not hungry and felt nauseus after eating. My mom called the nurse a few times and they said to eat small meals and to make sure he drank enough. Well, drinking made him nauseus and he couldn’t eat or drink anything much or he would fill up.
    Two weeks of this he had a blood test and was found to have a dangerously high level of potassium and was admitted to ER. They rehydrated him and got his bowels moving. Pretty much cleaned him out and got those fluids in him. It was a long couple of days, but he got his appetite back and has been doing good ever since.
    He had been sent home with a prescription for Colace, but didn’t take it because he was having loose stools. We now believe he should have been taking the Colace right away to get his intestines moving.
    During the hard two weeks with not much eating or drinking I found a website that lists foods to eat and to not eat post-op intestinal resection with diarrhea. Maybe this can help others. Here is the link:
    http://www.surgery.upmc.edu/farkas/Residents/Orders/Diets%20for%20post.htm

    My Dad is now working on plugging the suprapubic catheter and increasing urine flow via his penis and enlarging the neobladder. Things are progressing and I have found information on the web to help out. How is your husband progressing in this area? I would love to hear any information that might help my Dad keep dry and increase the penis urine discharge.

    Glad your husband is doing better!

    Karen E – California

Page 1 of 2