I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Deanne on May 11, 2015, 07:54:25 AM
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I should get my labs run tomorrow, but I'm not sure how I'll cope with it. It's hard to get off the couch before mid-morning at the earliest and I need to be up and moving by 5:30 am to get to the lab in time. I don't know if I can do it. I'm barely mobile. I know my labs will be awful anyway. I'm likely pretty dehydrated. I couldn't keep much down over the weekend and haven't been eating much in general for about three months. I gave up on phosphorus and magnesium supplements over the last week or two. I have too much gag reflex to get them down. I think at least part of the nausea & vomiting is because of Sensipar, so I skipped it last night to see if I still vomit today. I don't think it'll matter much if my PTH levels go up now anyway. My parathyroid surgery is Wednesday. I'm thinking about calling my neph to ask about having labs run at the hospital while I'm there. However, my tacrolimus levels will likely be screwed up then. I can't count on the hospital to follow my dosing times and I can't count on them to draw blood during my trough time.
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You have GOT TO do something to keep from dehydration. This is a critical issue and can't be put off for any length of time.
For me, two of the licorice jejjy bean type bird egg candies do a lot to calm my stomach. Do NOT over do it. Only two and make sure they desolve, or chew them so all the element gets released within the stomach.
As for the supplements that gag you, I can't take some of those large pills either. They are just too big to swallow, so I simply break them in half and take piece at a time. Try it and see if that helps you.
It's a bitch being so sick that you don't even feel like taking care of yourself, but you have to force yourself to get up and MOVE. Get it done. No one else can do it for you. Unless you give in, and then you had better call the Aid-Car to comoe take you to the Hospital cause if you don't, you may not last.
Let us know, don't give up.
Charlie B
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Yes, I've been too sick to get labs. Last week in fact. I would think the doc would just let you do them Wed in the hospital. Call your coordinator. They won't get a good tacro level but you can get that after surgery. Everything else can be checked.
In general, not just you but everyone, do not split your pills unless you know it's ok from doc or pharmacist. Some meds are unsafe to split into pieces. Especially anything that is slow release or long release.
Potassium - Are you on KDur? Those things are impossible to swallow and should be banned. You are allowed to split them but then they taste bad. If you have to be on potassium long term, tell your doc you want MicroK 10 Extencaps. Generics are available. They are capsules, larger capsules but much easier to swallow. I have long experience with this.
Magnesium - I don't know what you're using but if they're uncoated they could be bad. I use Slow Mag. It's a little more expensive but the tablet is well coated. It's easier to swallow and easier on your intestines and does not smell.
When you're nauseated, it's hard to swallow anything. Make sure you take your anti-rejections and your blood pressure meds. Everything else can be optional. If you're not taking your potassium, you can have Gatorade if that helps you. Do please try to drink some.
Call your coordinator and tell her what is happening. Labs before surgery, tacro level next week. They will work it out. Ask if you can have some Zofran for nausea. Get the ODT (orally dissolving tablets) not the regular. They dissolve on your tongue.
It sounds rough. Just take care of yourself the best you can. You only have to get through two days. Cry if you need to. Swear if you need to. I know you can make it.
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I agree with jeannea. Call your coordinator and tell him/her what is going on and ask for advice.
Just a few months ago I had a stomach bug and couldn't eat for 3 days (over a weekend). I did, however, manage to take all of my pills. I had an apt with the lab to have labs done on the Monday, and while I was well enough to go, it was a struggle. My results showed that my blood sugar was high...for the first time EVER. That's what happens when you take pred and myfortic without food. So if you DO have labs done, you may see your glucose levels elevated.
I'm so sorry you've had to go through so much, and I am hoping your surgery will go a long way toward solving a lot of these problems. Just one more full day to go. We'll all be thinking of you.
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I make sure to take the "important" stuff first - tacro, myfortic, prednisone, and BP med in that order. By the time I get to BP med, I'm usually gagging already and just can't get anything else down. It isn't about tablet size. It's about getting anything else down my throat. The magnesium supplement is uncoated and kind of thick from top to bottom. I think cutting it in half would only make it worse by adding sharp edges instead of rounded edges. It's always been hard to get that one down. I don't take anything for potassium. Phosphorus dissolves in water, but it doesn't really dissolve. It just floats around and just looking at it causes a gag reflex. I know I'll be able to recover my phosphorus level quickly after surgery when I can have dairy again, and just eat in general. I've been drinking ginger tea and a neighbor brought me some soda crackers and some clear broth (bless her!). No vomiting yet today, so hopefully that was all from Sensipar and at least I'll be able to drink more today.
I'll look for Slow Mag. It sounds easier to get down, regardless of nausea. With just a couple days to go, I'm going to remember Zofran for next time and hope there'll never be a next time. I'm very thankful now that I don't need potassium supplements. The options all sound terrible!
I'll leave a message for my neph today, so if I can make it to the lab tomorrow, she'll at least know to expect bad results and if I can't make it, she can work out the arrangements for the hospital to take care of it. Thanks for the information about a possible blood sugar spike, MM! I've been keeping an eye on my blood sugar levels. It was extremely high many years ago when I was on a high dose of prednisone and it's been on the border quite often since my transplant.
I knew these last few days would be the worst. It's like your body and/or mind thinks that with just a couple days to go, it can stop trying so hard and it gets even harder to try.
And now, looking out the window, I can see my goldfish pond is getting close to the edge of overflowing. I left a message for the landscape company to come out to fix whatever is making the water level go to high, but in the meantime, I'll have to get out there today to pump out some water. :Kit n Stik;
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I'm ready for a complete meltdown now. Someone just called from a hospital on the east side of town (I live on the west side, about 40 minutes away) to confirm my appointment tomorrow. WTH? I didn't know what he was talking about. Everything I've gotten from the surgeon verbally and in writing says my surgery is Wednesday at the hospital where I usually go, on the west side. I had to hang up to call the surgeon's office to find out what's going on. Apparently they scheduled a nuclear scan and never bothered to tell me anything about it, and the only availability was on the east side. I'm p*ssed off. If he hadn't called to confirm, I never would have known and my surgery would have been canceled. I was stressing about how to get my labwork done and now this!?
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Aaaaaaaaaarrrgghhhhh!!!!!!! Bunch of putzes. Keep telling yourself it will be over soon.
Sorry about potassium. My brain turned phosphorus to potassium. But that phosphorus that you put in water is gross too. Skip it.
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I'm ready for a complete meltdown now. Someone just called from a hospital on the east side of town (I live on the west side, about 40 minutes away) to confirm my appointment tomorrow. WTH? I didn't know what he was talking about. Everything I've gotten from the surgeon verbally and in writing says my surgery is Wednesday at the hospital where I usually go, on the west side. I had to hang up to call the surgeon's office to find out what's going on. Apparently they scheduled a nuclear scan and never bothered to tell me anything about it, and the only availability was on the east side. I'm p*ssed off. If he hadn't called to confirm, I never would have known and my surgery would have been canceled. I was stressing about how to get my labwork done and now this!?
I'm gobsmacked. :o
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Deanne--- SLOMAG is OK for athletes, and most non sick people, is not any better than other OTC pills…it will only be absorbed about 20% at best, and may cause a laxative effect.
If anyone is taking it I am am not criticizing, but it is not the best for kidney patients as you are NOT getting what you pay for. Even Natural Calm is not absorbed as well as a pure Mg liquid developed by Dr. Dean. I have had a very fast education on how critical getting enough Mg is, as the 4th MOST needed mineral the body isn't getting enough, 70% of women are deficient. Yet Mds prescribe calcium channel blockers when some Mg is what is needed.
Dr. Carolyn Dean created a Pico-ionic (microscopic droplets) FULLY absorbed/used Mg liquid that is added to PLAIN WATER, you just sip it during the day
1/4 tsp in a 2 qt or 1 qt bottle, and drink normally.
http://drcarolyndean.com/natural-health-resource/ Please consider looking at this product and NOT have to choke down pills. You can get the liquid shipped in 2 days via PM from her shipping dept in VA ( I think)
FOR IMMEDIATE relief: and use Epom salts as a bath, until then or Mg oil spray.
also SLoMag has a ton of calcium, which most of us do not need- we get too much in foods already. Calcium must be balanced to Mg in the body. Mg protects arteries and heart muscle from cramping which is what too much calcium can do.
the 2 other ways to get magnesium is transdermal…soak in an Epsom Salts bath.or foot bath --follow directions..if your kidneys are damaged you need to be careful on OTC Mg…it says so on the bottle.
into the skin, AVOIDING the kidney, HFS have it. ANcient Miinerals is a pricey brand, but there are others.
MagOx OTC is also not absorbed well..it travels thru the gut too fast. if you get diarrhea from either SlowMAg or MagOx then you aren't getting the dose…lose bowels is the failsafe, so you are NOT getting too much.
Dr Dean is the world expert on Mg, and the liquid REMAG Mg product making a big difference in MY life, calming the leg crams, providing energy. with CKD stage 4 I can't take the OTC pills safely
Magnesium—The Missing Link to Better Health
http://articles.mercola.com/sites/articles/archive/2013/12/08/magnesium-health-benefits.aspx
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MuddyGirl, you've obviously done a lot of research - thank you! I read your other thread about magnesium, and did some reading on my own a few months ago, but not as much as you've done. My impression is that many people have magnesium issues post-transplant, and I also read that the majority of the "normal" population is also lacking in magnesium, especially women. I wonder why the medical community doesn't pay attention to this.
I've gone to a float tank several times because of the transdermal absorption of magenesium. I told my neph about it several months ago, and the last time I saw her, she said she bought some epsom salts herself. Float tanks are much too expensive to do regularly, but I'm sure it helped. Once I'm back on my feet, I'll schedule a few more appointments to bring my levels back up. A float tank is also known as a sensory deprivation chamber. It's a very relaxing experience. You lay in 10 inches of water in a room by yourself in dark silence. I don't remember the exact percentage of epsom salts, but i think it's somewhere between 40 - 60%. So much so that it takes effort to push your feet down to touch the bottom when you're laying in it.
If SloMag includes calcium, it'll actually be a good choice for me later. Without parathyroids, I'll need to load up on calcium as well as magnesium. I'm interested in checking out your other forms of transdermal magnesium, too.
Have you seen if any independent studies have been done with Dr Dean's droplets? I'm skeptical of self-promoted stuff.
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MuddyGurl, please stop peddling pseudo-science. I went to the website and they are selling snake oil. Anyone who sells a product to "create perfect cells" is not doing real science. I did a search and I cannot find one scientific article by an independent researcher discussing transdermal magnesium. Can you provide one? It appears to be the latest fad/scare technique to make money. Books, products, etc. We can cure all your ills! Magnesium is the source of all your problems! The product your are recommending may or may not have any magnesium in it. What has been the change in your blood test levels?
I have been taking Slow Mag for a long time. My level of diarrhea is more tied to my CellCept dose than anything else. The presence of a side effect like diarrhea does not mean you are not getting magnesium. You don't seem to understand how side effects work. While I am sure you can absorb magnesium through something like a bath in Epsom Salts, you have no idea how much Mg you are getting. Just because you need Mg does not mean the more the better. Too much can cause problems also.
I don't understand your comment about calcium being bad for failing kidneys. We are on the transplant side of the board here. We (hopefully) do not have failing kidneys. Due to other concerns, I am getting weekly blood tests. My calcium and magnesium are right in line. The medical community does pay attention to Mg levels. Most people have completely normal levels without supplements. However, if anyone takes a standard multivitamin, there is Mg in it.
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Years ago the snake oil was collodial silver.
Same lack of scientific studies, loads of anecdotal claims, and people with a product to sell offering helpful information.
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well smack me down Jeanna!…there is always a risk to share info..as a NEWBIE here and some with Mg deficiency I shared what I read, the efficacy of Mg in general in pill form does not work for MANY. and most people get plenty of calcium in their diet, adding more isn't keeping in balance..since I DONT KNOW Deanne how would I know she needs Calcium? But she does know what works for her.
Who's is to say SLoMag is not the snake oil to harm her???? . Let her take the wheat and toss the chaff.
i ALSO said I was not criticizing ANYONE, we are all different yes? so if Slowmag works for YOU, why smash me if it doesn't? You didnt look anywhere for magnesium transdermal..if you did you'd find Dr. Mercola and others discuss its use, and I have attached a partial report, and full PDF below.
Possibly you, and others, believe NOTHING but the AMA way, ignoring complementary and evidence based medicine. If AMA didnt fund the studies with corporate dollars then it can't be useful, eh?
Without writing a book in an email I tried to cover basics.
CKD is a severe issue, for me and millions of others, there is very little I can take OTC that won't harm kidney function..you know that right Jeanna? Is this site ONLY for transplants and dialysis people? kidney disease patient not welcome?? WTF?
I have spoken to my medical team and they said to follow Epsum salts bath exactly, and stop if laxative effect is reached. Common sense says to research what you use, as I did. as I provided for her. I am not obligated to prove a thing to you based on your behavior.
You may not like Dr Dean or call her a quack…do you say the same of ANY MD who studies for years to find help for diseases they have too? Like Dr. Bernstein and diabetes? …his book promotes his methods, he is revered world wide..a quack? By your standard ANY product is snake oil if the person who studied and created it actually offers a real product. Liberal bias?
http://gotmag.org/how-to-restore-magnesium/
http://remineralize.org/mission/
http://drsircus.com/medicine/magnesium/uses-of-magnesium-oil/
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The Nutrition Practitioner Spring 2010 Transdermal Magnesium K Watkins and PD Josling
snip: ….Research also shows that between 68% and 75% of individuals in the United States do not consume the daily recommended amount of dietary magnesium, and 19% of Americans do not consume even half of the government’s recommended daily intake of magnesium3. Since 1940 the magnesium content within 72 basic foods has dropped by 21% and this situation is mimicked across several continents. Though worrying in terms of the health status of a population, the reality however is much worse. These statistics are based on a Recommended Daily Allowance (RDA) which is believed by many medical professionals to be set too low. Recently, the Independent Vitamin Safety Review Panel, consisting of academics and researchers, recommended that the RDA for magnesium should be raised because current standards are simply not adequate to prevent illnesses. In 2011 the RDA guideline for magnesium will be raised from 300 to 360mg.
Magnesium is needed for more than 325 biochemical reactions in the body. It helps to maintain normal muscle and nerve function, keeps heart rhythm steady, and is important for bone health too. As magnesium is consistently ignored in artificial fertiliser production, it is expected that many decades will pass before the soil reabsorbs this vital mineral even if we start adding it today. Whilst food fortification or oral supplementation is possible the whole process is rather slow and successful remineralisation not guaranteed to succeed3. Oral magnesium presents unique challenges for many individuals to effectively restore intracellular magnesium levels. Usage of poorly ionized forms of magnesium could be one factor to blame. Work has shown that magnesium oxide, an inexpensive magnesium complex included in popular dietary supplements could have fractional absorption in the gut as small as 4 percent. If one was to ingest the commonly recommended (albeit modest) adult dosage of 300-400mg elemental magnesium per day, this would equate to a usable dosage of only 12- 16mg. Even magnesium citrate, a relatively well absorbed magnesium compound, will provide a fractional absorption rate of 50% at most. And yet, realistic absorption rates from oral magnesium supplements are rarely taken into account when dosage recommendations are given.
Inconsistencies in bioavailability from one form of magnesium to the next remains a concern, but nearly all magnesium supplements share a common tendency to create a laxative effect in the bowels. The effect of different magnesium compounds on bowel motility and stool softness is further amplified with the quantity ingested in a single dose. The higher any single dosage, the greater the potential to cause diarrhoea, thereby reducing transit time through the bowels. There is reliable evidence to indicate that absorption relies heavily on magnesium’s staying power in the intestine – at minimum 12 hours. If transit time is reduced to less than 12 hours, the percentage of magnesium absorbed may be drastically impaired.
When these points of consideration are taken in conjunction with the unpredictability of each individual’s ability to absorb magnesium through oral means, the results become unreliable in many cases. In contrast, bypassing the digestive system with topical use of magnesium chloride circumvents the many common drawbacks which would accompany oral supplementation.
A sensible alternative therefore is transdermal application of magnesium as the chloride salt, which offers a simple, cost effective and efficient methodology to increase both cellular magnesium levels and to adjust the balance with calcium in a positive manner. Transdermal application is the ultimate way to replenish cellular magnesium levels since every cell in the body bathes and feeds in it and even dehydroepiandrosterone (DHEA) levels may be increased naturally.4 [http://www.cnelm.com/NutritionPractitioner/Issues/Issue_11_1/Articles/7%20Transdermal%20Mg%20revised2.pdf]
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Muddygurl, this site welcomes everyone, but this particular forum opens discussions for the particular needs of tx patients whose needs are very different from those of dialysis patients.
Immunosuppressants leech both mg and calcium from the body so what jeannea says is true in that the levels of these two minerals are regularly checked by our transplant teams. I do believe that most, if not all, tx patients are asked to take calcium supplements, particularly if said patient is female and post-menopausal.
I'm interested in the magnesium transdermal patch. Do you have any idea if they are covered by most insurance companies? If they are not, then that might be why they are not more widely used. My mg is just barely below the low normal point, but I don't want to take mg supplements (that would mean more pills), but I'd entertain the idea of a patch. When I remember to eat more mg rich foods, my mg comes within normal range.
What is "liberal bias"?
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MooseMom I will reply to you privately as my Mg message was for Deanna, and given in the best interest of health. I am certain others calling me disparaging names can defend themselves.
Deanna, I am happy to see you had the option to do a chamber bath!!! ..I've always wanted to try one just for creative thinking, and to "know" my body better…as in what hurt where, really relaxing when no pressure from bed or clothes or blankets in on the body.
getting away from all noise and intrusions of life (creaky wheels, dripping faucets, neighbor yelling at their kids a block away.) OR ANY time spent in a hospital bed in a SHARED ROOM, to me is an absolute nightmare. in fact my version of hell is an idiot in the next bed demanding the TV on at 11pm and shrieking when she can't have her Jerry Springer "My baby daddy knocked up my mom" episode on!!!! Just to "calm and distract" herself… true story I had JUST survived complete nephrectomy 4 hours earlier …weak as water, unable to move from the bed, and this witch is wheeled in at 10pm and INSISTED on the TV…they GAVE IN to her just to shut her up. What about me? Apparently I had no rights.
I called my nurse in and begged for MY rights.. TV off at 9pm is the rule. and WHY the F don't they have ear buds for listening silently? so not to disturb others? SMPLE solution. not one of those staff brains thought of it.
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I'm all ready for surgery. :yahoo;
I'm still trying not to be too optimistic that it'll happen. Every time I thought it would happen before, something got in the way, right up through that surprise scan yesterday. I'll believe it after I wake up for surgery and they tell me they really removed them. I have a couple hours to kill before it's time to leave. I need to get the garbage out and pump some water out of the pond yet.
The scans yesterday ended up taking several hours. I thought it would be a quick test. They injected the dye, sent me off to wait for 20 minutes, then did a 5 minute scan and a 10 minute scan with a couple different cameras, and then sent me off to lunch for an hour. After lunch they did a 25 minute scan, followed by two more 5 - 10 minute scans, then off to another piece of equipment for another 10 minute scan.
I'm going to try the transdermal magnesium. I did some reading on my own about it a couple of months ago and found conflicting information about it absorbing through skin. That was before I started going to the float tank. After I started floating, my magnesium level increase a bit. Not nearly enough to stop oral supplements, though. I don't think just a simple epsom salt bath would make much of a difference, but it can't hurt, unless someone tries to depend solely on this, and I started taking epsom salt baths when I was floating. I didn't notice a difference over what I was getting from going floating. The level of epsom salt in a float tank is probably thousands of times more intensive than what someone can put into a bathtub.
I found the transdermal oil on Amazon last night. The reviews said it causes itching where it's applied, but I'm game to give it a try. I'm thinking it might be comparable to a float tank, where it might help when used in addition to ingested supplements. I'm also going to switch to SloMag. I couldn't have any extra calcium until now, but assuming surgery occurs today, I'll need to start adding a lot of calcium after my parathyroids are gone.
I don't really believe the 1/4 teaspoon of droplets in water, either. I'd want to see some independent studies about it. There are too many quacks out there self-promoting their snake oil to believe things like this without an independent study. As for consumer reviews, I know some of them write these "reviews" themselves to make them look legitimate.
MuddyGurl, Jeannea has been around a long time and has been through a lot, much more than me. She's seen it all, including the snake-oil pushers. It's important for all of us to be skeptical when it comes to taking care of ourselves. People on the internet push products that are very dangerous just to fill their pockets. They don't care what kind of harm they're doing to us. I didn't go to the site myself because just from the description, red flags went up for me, too. If the site really says something about "creating perfect cells" the first thing I do is run far, far away.
I've always felt welcomed here. I joined this site when I still had about 50% function left and found the people and information here invaluable. We've all seen people try to push "cures" that don't exist. Most people pre-dialysis are frightened and angry, and trying to avoid the inevitable. Reality is that you WILL end up on dialysis. Hopefully not for a few years. It's fairly normal to scour the internet for a fix and tell us about miracle cures. They just aren't there though.
I'm appalled about your hospital experience! Where were you? I don't think they have shared rooms here, at least I've never seen one. The TVs audio here is also through a tiny speaker right on the beds, so only the person in the bed can hear it. I'm more considerate than the roommate you had, but otherwise, I'm your roommate laughing at the Jerry Springer show. I have a weird sense of humor.
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Update - surgery is canceled. Surgeon is sick. I told them if they don't fix this, I'm going to put a gun to my head.
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Update - surgery is canceled. Surgeon is sick. I told them if they don't fix this, I'm going to put a gun to my head.
Be careful with such comments .... it can trigger interventions you don't want.
I told the transplant coordinator I was planning on discontinuing dialysis. She was all worried she had to do something until I told her my plan was to stop treatment when I reach age 85.
As for consumer reviews, I know some of them write these "reviews" themselves to make them look legitimate.
Consumer reviews touting improvement are useless due to the placebo effect. Lou Gherig was convinced the treatments he was getting for ALS "were working" pretty much until the end.
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Update - surgery is canceled. Surgeon is sick. I told them if they don't fix this, I'm going to put a gun to my head.
Be careful with such comments .... it can trigger interventions you don't want.
I told the transplant coordinator I was planning on discontinuing dialysis. She was all worried she had to do something until I told her my plan was to stop treatment when I reach age 85.
It d*mn well better trigger action, and I think I got their attention. Someone from surgery scheduling just called to tell me he doesn't usually do surgery on Mondays, but can I be there at 5:30 Monday morning.
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Update - surgery is canceled. Surgeon is sick. I told them if they don't fix this, I'm going to put a gun to my head.
Be careful with such comments .... it can trigger interventions you don't want.
I told the transplant coordinator I was planning on discontinuing dialysis. She was all worried she had to do something until I told her my plan was to stop treatment when I reach age 85.
It d*mn well better trigger action, and I think I got their attention. Someone from surgery scheduling just called to tell me he doesn't usually do surgery on Mondays, but can I be there at 5:30 Monday morning.
You need to be careful you don't get referred for a psych consult.
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I don't think I'm at risk of a psych eval yet, although if they cancel surgery again on Monday, a psych eval will probably be a good idea. Hypercalcemia affects all parts of the body, brain included.
My neph called back. She said she gets it and understands how sick I am, if nothing else than just because going off the deep end isn't normal for me, and she acknowledged that a good piece of this is her fault for making me jump through hoops before she'd approve me for surgery in the first place. I told her that I'm likely dehydrated, don't eat very often, and stopped taking magnesium, phosphorus, and Sensipar. She said as long as I'm taking my immune suppressants, try to drink as much as I can and not to worry about anything else, and that both she and the surgeon understand how upset I am about the ongoing delays and surprises, like yesterday's appointment that no one bothered to tell me about. She wants me to go run labs, of course. I told her I can go do it this afternoon, but I can't run my tacro level because I can barely walk in the mornings. Getting to the lab at 6:45 am isn't an option. I pretty much move from my bed to the couch and then stay there until the afternoon.
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Deanne…I CAN imagine the stress and frustration you are going thru.
When I was DX with kidney cancer and refused surgery until I healed from a dialing car accident I was concerned they would say I was 'incompetent' to decide or non compliant..you can lose your rights and be forcefully admitted for mental incompetence.
I am a Veteran, my medical care is through the VA because I served in war time, so all my hospital stays are thru the SF VA…I went immediately to the clinic shrink, and asked her to see me, to produce a record I was STABLE and not crazy to refuse surgery at that time….a few months later when I was better I did have it, and did well because I didn't let them jerk me around at their convenience.
When you have a 28 yr old 'baby doctor" resident, they all rotate thru evey 3 months so you never see the same one, no patient skills, no ability to understand my injuries, all you are is an annoying human connected to the tumor he can't wait to cut out for his first nephrectomy experience.
I am not stressed if I have to accept dialysis, please don't assume I am. My only intent was to share what I learned, as an adult you are smart enough to know if it will work for you. My concern for nutrition after kidney cancer is my focus on the right supplement as needed, not from a misunderstood ability to "cure myself with herbs" or such nonsense you get when OUTSIDERS look at what yu are doing. Here I expected better.
you idea of Reds flags aside…as a researcher myself for 2 decades and a former surgical OR technician, experienced in medical procedures, and survival through nutrition I made a choice that works for me. I am not a newbie to life or kidney cancer, or kidney disease, etc. I am a newbie HERE only.
But what I get is it's OK to vilify me, in public, just because I did offer my own experience. An established member has the respect of longevity, I get that, being new here, shouldn't mean I have NO grasp of medicine and procedures.
Simply saying "Your're wrong" should be enough, but excuses are made it's OK to speak to me this way because I can't possibly understand?. really?
I expect no apology, but in a site specifically for support of others I am disappointed.
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Update - surgery is canceled. Surgeon is sick. I told them if they don't fix this, I'm going to put a gun to my head.
I just can't believe it.
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getting away from all noise and intrusions of life (creaky wheels, dripping faucets, neighbor yelling at their kids a block away.) OR ANY time spent in a hospital bed in a SHARED ROOM, to me is an absolute nightmare. in fact my version of hell is an idiot in the next bed demanding the TV on at 11pm and shrieking when she can't have her Jerry Springer "My baby daddy knocked up my mom" episode on!!!! Just to "calm and distract" herself… true story I had JUST survived complete nephrectomy 4 hours earlier …weak as water, unable to move from the bed, and this witch is wheeled in at 10pm and INSISTED on the TV…they GAVE IN to her just to shut her up. What about me? Apparently I had no rights.
I called my nurse in and begged for MY rights.. TV off at 9pm is the rule. and WHY the F don't they have ear buds for listening silently? so not to disturb others? SMPLE solution. not one of those staff brains thought of it.
The sensory deprivation floating tank chamber that Deane mentioned is a soothing balm for anyone whose nervous system is shot. It can feel initially a bit claustrophobic for some because you are locked in this dark chamber but it is remarkably relaxing.
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Deanne, I wish I could offer you some advice about your issues but I unfortunately I haven no experience. I do understand the horrors of large bureaucratic medical systems and how they often seem to work against the patient sometimes. I hope the system becomes more user-friendly for you.
One friend suggested one has to have good "project management skills' to be able to deal with any complex medical condition. I was intrigued by that and still don't quite understand how this may look like. But whatever it is, it sounds like a good way to keep track of the myriad of details, tests & other health care workers that look after different things. I do find dealing with my health problems rather confounding and fragmented.
Most of all, I hope you just feel MUCH BETTER, as you continue to battle with what you have on your plate right now. :pray;
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Muddy Gurl, I am upset when people come here to say things that are not true. In this country, there are no regulations attached to the type of supplement you are promoting. Have you read recent news articles about sham supplements? I don't have a problem with you being a newbie. I have a problem with you stating untruths. I cannot believe anyone who promotes a product labeled RNA to create perfect cells. That's what your Dr Dean does.
I do not have a liberal bias, whatever that is. I have a scientific bias. I have a master's degree in physical chemistry and I know what scientific testing is. I could find almost no scientific testing on transdermal magnesium. I found one clinical trial using it in fibromyalgia patients. But only that they opened the trial, no results. Your "evidence based testing" means nothing in science. You also did not tell me what change in lab results came from your use of this product.
What did you research? I would love to hear. If you know about research and medicine, you should know why having diarrhea as a side effect does not mean you're not absorbing magnesium.
I am upset because you did not present what works for you. You said that we and all our doctors were wrong for using or recommending Mg supplements. I am not vilifying you in public. I am challenging your knowledge. You're the one who said I was completely wrong for presenting my personal experience which was originally all I did. I told Deanna that IF her doc wants her to take Mg that I have found this brand easier on the stomach. That is all. You were the one who told me I was dead wrong.
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Deanne, I am SO SORRY that you didn't even get your surgery. Just awful. It's good they're fitting you in on Mon. Even if they would give you a psych eval, they would find you perfectly normal. You're reacting to suffering. Try to hold on until Monday. Take care of yourself. :grouphug;
(I promise I will also stop fighting on your thread now.)
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One friend suggested one has to have good "project management skills' to be able to deal with any complex medical condition. I was intrigued by that and still don't quite understand how this may look like. But whatever it is, it sounds like a good way to keep track of the myriad of details, tests & other health care workers that look after different things. I do find dealing with my health problems rather confounding and fragmented.
Your friend is absolutely correct. The analogy I use is that you have to be the captain of your ship. You have to make sure that all departments are integrated, and if they are not, your job is to know what each is doing. I keep copious notes and files on things like appointments, lab results, etc. When you are newly diagnosed with a complex and chronic condition, it takes time to learn the ropes, as it were, but it can be done. It MUST be done. And it is not always east to be the captain when you are unwell.
I am not a controlling person. I do not much care what other people do. But when it comes to my renal health, I am in charge. Whenever I go into an appointment of any kind, I let it be known that I am the captain. I may not be the SPECIALIST, but the captain does not have to be the engineer.
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This is so unreal it's almost worth writing a book about. I'm sitting in a parking outside a pharmacy. My neph sent a prescription for a nasal spray to try to bring down my calcium level. She had me run labs yesterday afternoon and it's over 12 again. The first pharmacy doesn't carry it so they sent me here. This pharmacist refuses to fill it until someone from my neph's office cas back to tell them if I should alternate nostrils.
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This is so unreal it's almost worth writing a book about. I'm sitting in a parking outside a pharmacy. My neph sent a prescription for a nasal spray to try to bring down my calcium level. She had me run labs yesterday afternoon and it's over 12 again. The first pharmacy doesn't carry it so they sent me here. This pharmacist refuses to fill it until someone from my neph's office cas back to tell them if I should alternate nostrils.
Write a book and then sell the movie rights. You'd make a gazillion bucks. Make it a comedy! It's sounding more and more like a French farce.
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It really is a comedy. All I could do is say "of course" and burst out laughing. I called my neph's office to ask if I should wait or go home. My neph is out. They told me to go home. Three more days.... maybe.
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I've never heard of a nasal spray that can bring down calcium levels. That's really interesting. What's the name of the medication? Since your neph has gone home, will you get your spray maybe tomorrow? Alternate nostrils or not?
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I just hung up from my neph. She wasn't home. I think this was either her dialysis clinic day or her hospital day. She checked in with her office, got the message and called the pharmacy to straighten things out (whew!). I'll go back for the prescription after work. I'm off in another hour. I think the drug is calcitonin.
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I'm glad to hear it, Deanne. Your neph is indeed a gem!
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This is so unreal it's almost worth writing a book about. I'm sitting in a parking outside a pharmacy. My neph sent a prescription for a nasal spray to try to bring down my calcium level. She had me run labs yesterday afternoon and it's over 12 again. The first pharmacy doesn't carry it so they sent me here. This pharmacist refuses to fill it until someone from my neph's office cas back to tell them if I should alternate nostrils.
Write a book and then sell the movie rights. You'd make a gazillion bucks. Make it a comedy! It's sounding more and more like a French farce.
I definitely agree that it would make for a good book. The movie would have to be wild comedy of errors that tells the world how it's really like to be a downtrodden tired suffering patient in the medical world sometimes. The thing is one must be a fastidious note-taker and committed diary writer in order to truly get a good book out of one's experiences.
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I am hoping your surgery goes well tomorrow, Deanne!
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Thank you! 15 minutes until I head to the hospital and no one has called to cancel yet. Of course it's also only 4:45 am and the surgeon is probably still in bed, too.
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I don't have numbers yet, but my nurse said my PTH level is down dramatically. Someone just drew my blood to check my calcium level. They're keeping me overnight to keep an eye on it. I'm looking forward to home tomorrow, beginning my recovery, and eating again in general, after not eating more than once or twice a day for months. Bring on the ice cream!
In the meantime, I'm on the 8th floor in a room that overlooks the valley and thunderstorms are predicted tonight. I love a good thunderstorm and they're a rarity in Oregon.
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I hope you spent a comfortable night in the hospital listening to the calming sounds of distant thunder. I'm glad to hear that your PTH is already down, and I hope the rest of your numbers are good, too.
What do you think will be the first thing you'll be hungry for? I am really hoping that now this whole nightmare will be behind you and that you will be able to join the real world again, such as it is.
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Sometimes after a parathyroidectomy, one may experience "Hungry Bone Syndrome."
That's where the blood calcium levels can go real low.
So be on the alert for hypocalcemia.
Have a uneventful recovery!
:cuddle;
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Yes have ice cream … lots!
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No ice cream yet, or at least not a lot of it. They want to monitor my calcium levels pretty closely for a while before they'll turn me lose on dairy because of the potential for some residual stuff that could cause my calcium to go high again in the short-term.
I came home yesterday. A friend came to pick me up, but in the end, I drove myself home. My friend has Parkinson's and while I was waiting for everything to be ready so I could leave, my friend mentioned that she was a 1/2 hour late on her meds and then she admitted she's done some things behind the wheel that she doesn't think are safe. A couple of us are encouraging her to stop driving, but that's another story. In the end, I thought it would be better for both of us if she let me drive myself. It would have been another hour before she got her meds if she took me home and I knew she'd feel pretty sick by then, I felt safer driving myself, and it saved a trip back to the hospital later to pick up my car.
My legs are still pretty shaky and I imagine it'll take a while. I see my neph next week, I think (I need to find my appointment card), and will ask her about physical therapy.
Thankfully, I think this drama is finally at an end, just in time for my birthday. I couldn't ask for a better birthday present! :bandance;
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Deanne, happy birthday. The best birthday present is receiving a bit of extra good health!
I take it this is the tertiary parathyroidism condition that my Neph told me once about? So even with a successful kidney transplant, there can still be problems with the PTH, calcium & phosphorous trio?
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This is great news. Congrats.
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I can't believe you had to drive yourself home from surgery, but I'm glad you were able to. I hope your friend got to her meds on time.
I'm very happy that the end of this awful saga is in sight. I am eager to hear about your progress now that the dreaded parathyroids are out, so I hope you will keep us posted. I'm also very eager to hear more about your appointment once you see your neph next week.
Have a great birthday! So glad you're home!
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I take it this is the tertiary parathyroidism condition that my Neph told me once about? So even with a successful kidney transplant, there can still be problems with the PTH, calcium & phosphorous trio?
Yes, it's teritary parathyroidism. From what I understand, it isn't common, but I seem to be lucky that way. My phosphorus level wasn't too bad. It was mostly on the low end of normal with phosphorus supplements, but at least it was in the normal range. My PTH level at first seemed to level off at around 140 - 150 on Sensipar. I was never able to stop taking Sensipar. Then all of a sudden, my calcium level jumped to 12.8 and the symptoms were awful. My PTH had jumped up to over 200. I know a lot of people on dialysis have a higher PTH than that, but combined with a high calcium level, and considering it should have dropped after transplant, it wasn't a good thing. My neph increased Sensipar, but my PTH level only went higher and the side effects from Sensipar made me feel even worse. For a little while, my calcium level dropped a bit. It was still too high at around 11, and I tried to avoid eating much calcium, but it didn't do any good. My calcium level went back up over 12 again.
Part of the reason I post stuff like this is to vent, but part if also because it's best not to think transplant is a magic solution that will solve all problems. A year after my transplant, the jury is still out as to whether transplant was the right decision for me. Hopefully, this is the last complication for a long time. Time will tell.
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Deanne,
I really appreciate you taking the time to explain that to a Newbie like me. Yes, that really has great educational worth, it really keeps me informed. It just goes to show how deeply complicated living with kidney failure really can be. Perhaps this type of surgery should be done much earlier once people are poised to develop tertiary parathyroidism?
I hope you're feeling better already, though recovery from any surgery can take a little time. I hope your lab results really start to shine.