Hey from a another Canuck!

[Baldrick]

Hi everybody! My name is Jeff. I'm 31 and reside an hour east of Toronto, ON. Due to my extreme weight and BMI my only option was a two stage surgical approach. The MOHLTC (Ministry of Health & Long-Term Care) sent me to Cleveland, OH to have a VSG done by Dr. Philip Schauer at the Cleveland Clinic in October 2009. I sent just shy of a month there pre/post-op to ensure there were no complications (most of my time was at the Euclid Hospital on the rehabilitation floor). My pre-op weight at its peak was 750lbs (BMI of over 93). Day of surgery I was 700lbs even due to being on a liquid only diet prior to surgery.

After 250lbs of total weight loss I was approved to have a revision with Dr. Gagner in Montreal, QC to complete my request for the DS. That was performed in June 2012.

After making a post elsewhere regarding vitamin deficiency issues someone privately told me of this site, which after some browsing I'm very thankful to have learned about it (I'll choose to let them decide if they want to divulge they were my referrer). Earlier in the month I was admitted to the hospital after spending 9 hours in the ER on a Sunday afternoon getting a calcium IV and the next morning when I went back for blood work my level had not increased. I spent 10 days getting pumped with calcium before being released with my level being around 1.85 (I believe 2.2 is considered the lower end of normal?). However old blood work from the beginning of the year shows my PTH to be 23.4 and my vitamin D (Hydroxy 25) <20. My calcium level was down to 1.21 when I was admitted to the hospital.

With no post-op care provided to me from the Bariatric Centres of Excellence in Ontario and my family doctor not really indicating to me any concerns for most levels in my blood work (he did have me tested for parathyroid issues, but he didn't quite clue in on the interconnected issue that was playing with my calcium level at the time) I've sort of been orphaned by the system and left to fend for myself.

In Ontario (at least when I was going through the process) they ask if you are willing to take supplements for the rest of your life, but they never once mention that nothing is covered by OHIP or ODB (I'm on ODSP - disability, thus I am a low/fixed income earner). My budget simply could not afford a full on regimen. I actually had to move into my mom's basement in June 2014 as I couldn't afford my 1 bedroom apartment anymore after falling behind on rent for two months.

I've spent the past couple years trying to find some government program that would look at my medical history and cover the supplement costs as they are medically necessary to me, but no such luck. Presently I am trying to get some D3-50 capsules to first my PTH and vitamin D levels to then help with the absorption of calcium.

I understand the importance of the daily supplementation, however when 60-75% of your monthly income goes to pay your rent and then another 10-15% is for phone and a bus pass - well that leaves you with very little funds to cover food and supplements. Social assistance gives you just enough to live off of, but not enough to better yourself sadly. I did not envision myself being stuck on ODSP for nearly 10 years.

I will say that after looking through countless threads one poster in particular seems to have lit a fire under me to find out answers to some questions I was never made privy to the answers. I had been speaking with a manager at the MOHLTC regarding a reversal of the switch as a last resort or worst case scenario, however maybe there is evidence to support a revision to help me out as it seems others who had issues I have been dealing with saw improvements. So I'm feeling much more hopeful.

At any rate my intent was never to be neglectful when it came to supplements I just tried to juggle all my financial responsibilities as best I would. My parents aren't financially capable of helping and the one family member who is doesn't tend to be the charitable type.

Anyway that's more or less my journey over the past 6.5 years. Oh and before I shut up I realized I did not mention my weight loss. Overall I have dropped 430lbs. I'm sitting at around the 320lbs mark. I'm carrying a large amount of excess skin (I'm guess my apron alone would be a good 20-30lbs of skin and depleted fat cells). I'm also 6'3" with a large frame (like a linebacker in football) with massive bones. So realistically I don't think I'd ever get down to 210lbs like a BMI calculator says I should be. That formula is so archaic and outdated! In my mind I figured 250lbs would be more appropriate.

That's me. (Sorry I really do tend to become a chatty Cathy at times)

 

[DSRIGGS]

Supplementing vitamins and minerals is not optional with the DS, nor is it that expensive. I spend maybe $60 a month.

I don't mean to be rude but at 320 pounds you are big but not huge so I don't see your weight as a disability . Do you have some other medical condition making you disabled? If you can't work due to a condition and are stuck on assistance then you probably have no choice but to get rid of your phone because not having a phone won't kill you but not supplementing will end up with you dead.

I wish I had some better words of wisdom but that is the reality of things, unless I am missing something.

BTW I take on a daily basis:

200k IU of Vitamin D
100k IU of A
2,400 mg of calcium citrate
1,200 mg E
4,000 MCG K
4 mg copper
300 mg zinc
2 multivitamins

 

[Clematis]

Welcome Jeff!

Congrats on the weight loss. You're certainly been through the wringer. Let us help get you straightened out and on the road to health.

I won't pull any punches. Here are the facts if you want to live to see 40:

1. You need to keep the DS you've been given or you will die from the co-morbidities of obesity. You are/were not "functional" obese. You are/were super super morbidly obese. You need the DS. Don't even think about reversing this gift.

2. You must take the appropriate supplements or you will die. They are as important as the air you breathe. Can you get your physician or Gagner on the caper to claim medical necessity as other medications are covered? Your #1 priority is to figure out how to pay for these vitamins. Don't give up.

3. You must have semi-annual or annual labs to check your vitamin levels and adjust their intake accordingly. (See the posts on the Vitamins & Labs section of this site for the labs that should be drawn.) Post your own lab results in that section and we will offer advice on the vitamins you should be taking.

You have the determination to lose 430# so I bet you can accomplish 1, 2, & 3.

 

[southernlady]

Welcome, @Baldrick

 

[JuliaDS]

Welcome @Baldrick. Glad you found us Now, please, please find a way to get your supplements. As others have mentioned - not optional.

 

[Baldrick]

Supplementing vitamins and minerals is not optional with the DS, nor is it that expensive. I spend maybe $60 a month.

I don't mean to be rude but at 320 pounds you are big but not huge so I don't see your weight as a disability . Do you have some other medical condition making you disabled? If you can't work due to a condition and are stuck on assistance then you probably have no choice but to get rid of your phone because not having a phone won't kill you but not supplementing will end up with you dead.

I wish I had some better words of wisdom but that is the reality of things, unless I am missing something.

BTW I take on a daily basis:

200k IU of Vitamin D
100k IU of A
2,400 mg of calcium citrate
1,200 mg E
4,000 MCG K
4 mg copper
300 mg zinc
2 multivitamins

$60 USD is roughly $75-$80 CAD with current exchange rates. The issue is that certain supplements are not readily available in Canada. One example is the D3-50, I also suspect other high dosage, dry formulated vitamins (like A) are also not going to be found at a Canadian retailer/e-tailer. I am not making excuses I am just pointing out the issue of obtaining certain vitamins being costlier due to additional shipping and currency exchange rates. I'd estimate almost twice the cost in CAD on a monthly basis for your regimen.

I got onto disability when I was over 600lbs and then I eventually got up to 750lbs. However I suffer from other medical ailments that inhibit my ability to seek gainful employment. I did make attempts over the past ten years to get a job with no success. Besides my weight I lack any job experience. My resume has absolutely no previous employment history, which doesn't bode well. Obesity is still an acceptable prejudice in parts of Canada if you compare it to the US. I once traveled to Anaheim, CA in late 2010 and while waiting for a trolley to take me to a convention centre I had to sit outside the gates to Disneyland. Not a single kid walking past me paid any attention to me (I was still around 500lbs). I can't tell you how many times just stepping off an elevator I had some child with their parent make some exclamation about 'the really fat man'.

The phone is not a luxury. I tried to go without a phone for a period of time, but then I was unable to make medical appointments, book transportation, etc. Sadly email is not an acceptable form of communication (especially within the medical field). The bus pas is already subsidized and as I do not drive it is the only means for me to get around.

I think one of the key issues is even without proper supplementation the fact that I received no follow up care from professionals within the bariatric field and the fact that no one notified me in advance of certain levels dropping (until it was way too late) are clear indications of a flawed system. The reason I was 'orphaned' (that was the word a manager at a bariatric clinic used) is due to my surgeries happening out of country and out of province. I think it is unfair that due to the fact I had no choice in the matter due to not being a candidate to have my surgeries in Ontario that no one was willing to see me post-op.

In my mind I do not see how say a high dosage vitamin is any different than say a prescription drug for high blood pressure when the person requiring the high dosage vitamin needs it in order to not die in a worst case scenario.

I will say that you were actually the person whose posts lit a fire for me. It was your posts regarding SBL, AL and CC lengths. This was something that I was not informed about after my surgery and it could explain somethings.

 

[Baldrick]

Welcome Jeff!

Congrats on the weight loss. You're certainly been through the wringer. Let us help get you straightened out and on the road to health.

I won't pull any punches. Here are the facts if you want to live to see 40:

1. You need to keep the DS you've been given or you will die from the co-morbidities of obesity. You are/were not "functional" obese. You are/were super super morbidly obese. You need the DS. Don't even think about reversing this gift.

2. You must take the appropriate supplements or you will die. They are as important as the air you breathe. Can you get your physician or Gagner on the caper to claim medical necessity as other medications are covered? Your #1 priority is to figure out how to pay for these vitamins. Don't give up.

3. You must have semi-annual or annual labs to check your vitamin levels and adjust their intake accordingly. (See the posts on the Vitamins & Labs section of this site for the labs that should be drawn.) Post your own lab results in that section and we will offer advice on the vitamins you should be taking.

You have the determination to lose 430# so I bet you can accomplish 1, 2, & 3.

I have several medical professionals willing to vouch for me and the necessity of the supplements and why they should be covered in my case, however the issue is finding the person or institution to voice this too that is the problem. My family doctor, an internalist, dietitian, psychologist, etc. have all said they would back me up on the matter so I have that in my back pocket. I recently wrote to my MP and MPP again as the previous ones ignored me.

Labs are tricky as a number of the tests from the requisitions I received from Dr. Gagner's office are not covered by OHIP. Talking about things like selenium for example. I honestly have no clue how important knowing that is. This is why I'm hoping that the labs I had done at a Toronto hospital covered everything (I showed the surgeon the 12 month requisition and I assumed he just copied that verbatim). I will ask my family doctor next week for a print out of any new lab results he had forwarded to him from March and April.

I'm sure I come off as foolish and stupid when it comes to my surgery and supplementation. I am certainly not a novice, however I've had more on my plate in my 31 years than most ever deal with in their lifetime. I don't have family who are fully supportive - they might say they are, but when something comes up they are no where to be found. I could go into a long spiel on my crappy life, but I'm told that just depresses people, heh.

Presently I am cutting into my food budget, which is tiny to begin with to cover a couple of the more necessary supplements right now (calcium and vitamin D, possibly vitamin A as well).

The reason why DSRIGGS posts about lengths were intriguing to me was due to the fact that I am dealing with diarrhea or loose stools for most of the past 4 years. Another poster mentioned getting something lengthened improved the bacteria overgrowth issue causing odor issues, which is something else I personally deal with. I pass gas and it literally just clings to my clothes and if I can smell it I damn well know others can so it makes me anti-social at times.

Anyway I'm trying my damnedest to fix the financial problem. Ideally getting the government to help is my first choice, but the next option is to plead my case to my wealthy grandfather who I rarely see and hope that ~$100/month is not too much to ask for. I rarely ask anyone for anything, but I guess my well being has to trump that.

 

[Baldrick]

So I mentioned in a response that I contacted my MP and MPP. I just received what appears to be an automated email response from my MP's offices stating they received my message and that a proper response will be provided at the earliest opportunity. For now I'll be optimistic, but that's tough when it comes to politicians.

 

[DSRIGGS]

Baldrick. Dry Vitamin a, e, d and k are not typically available at local retailers in the US either. I buy them all from Amazon. Again, you can not like the cos, but not taking them isn't optional.

 

[Baldrick]

Baldrick. Dry Vitamin a, e, d and k are not typically available at local retailers in the US either. I buy them all from Amazon. Again, you can not like the cos, but not taking them isn't optional.

Indeed, but I also made not of e-tailers (i.e. Amazon), which the vast majority of items on the US Amazon are not eligible for shipping to Canada. I'm currently having someone I know in Yuma, AZ re-ship the dry D to me. This means likely an extra $20 in shipping costs that most Americans wouldn't have to incur due to free shipping options. Customs could also end up charging a brokerage fee and duties as well, which could add up to be the same amount as the item itself. The issue is I have a limited amount of money that has to cover all expenses. Unlike the US system we don't receive money and then food stamps. Many people on ODSP are right in that the amount given now would have been find to live off of back in 1997.

I do not have lines of credit, savings, or any other means to cover any expenses. If I run out of money a week into the month I'm basically screwed.

I took different supplements based on what I could afford or what was on sale at the time. No one ever told I had a calcium issue until someone called me and said I should get to the ER for an IV. The PTH issue they attributed to a parathyroid issue and not to a vitamin D/calcium deficiency. I trusted the medical experts to diagnose problems correctly, which I suppose is part of the problem.

As I said I'll find a way to get by for now on my own. That doesn't mean I can't work to find a way for it to get covered by some other means. I'm not trying to come off as being defensive for the record. I just tend to explain the situation from all angles to better represent my situation.

Perhaps no matter what I say I won't be right in the eyes of most. If I was told there was no funding whatsoever than perhaps I may have decided not to have the revision.

 

[DSRIGGS]

I am not suggesting that you should not try to get vitamins covered. If you can that would be great.

 

[Clematis]

One of the sad things about the DS is that the very surgeons who do the surgery are clueless about the vitamin and dietary needs of the patients they carve up. And these are the surgeons who do the DS -- you're dealing with medical professionals who probably don't even know what it is. You have to study up on what you need and be your own advocate.

Yes, you are in quite a pickle. I don't know how the Canadian health system works for anyone, much less for someone with limited finances. Frankly, I'm astounded that they paid to send you to CCF for the VSG. (I live in Cleveland.) I agree that if they cover, say, thyroid medicine they should cover ANY life-preserving medication which includes vitamins. (US insurers do not routinely cover vitamins. I just pay for mine.) Does Canada have something like Legal Aid? Perhaps you need an attorney to compel the health system to cover your vitamins. (Ha. I don't know how the Canadian courts work, either.)

I'm sorry I don;t have any other advice for you but I do hope you are able to sort it out.

 

[Larra]

Hi and welcome!

Given your financial limitations, focus on the most important supplements - D and calcium, A, and K. Maybe zinc. While E is also fat soluble, deficiencies of E are not at all common, even with the DS, so don't waste your money there. Same for selenium. You should be able to find calcium citrate cheap locally, also a cheap multi (generics are fine) and cheap zinc. The dry D, A, and K you will need to order.

Of course, if you can get your provincial medical program to help out with paying for this stuff, great, but if I were in your shoes I'd be working on grandpa, such as he is.

Re: the gas and odor and such, that's usually diet related, so try cutting back on carbs and see if that helps. Sometimes the problem is bacterial overgrowth, which usually responds nicely to a short course of flagyl (aka metronidazole), which is a prescription drug that hopefully would be covered as part of your medical care.

 

[Baldrick]

One of the sad things about the DS is that the very surgeons who do the surgery are clueless about the vitamin and dietary needs of the patients they carve up. And these are the surgeons who do the DS -- you're dealing with medical professionals who probably don't even know what it is. You have to study up on what you need and be your own advocate.

Yes, you are in quite a pickle. I don't know how the Canadian health system works for anyone, much less for someone with limited finances. Frankly, I'm astounded that they paid to send you to CCF for the VSG. (I live in Cleveland.) I agree that if they cover, say, thyroid medicine they should cover ANY life-preserving medication which includes vitamins. (US insurers do not routinely cover vitamins. I just pay for mine.) Does Canada have something like Legal Aid? Perhaps you need an attorney to compel the health system to cover your vitamins. (Ha. I don't know how the Canadian courts work, either.)

I'm sorry I don;t have any other advice for you but I do hope you are able to sort it out.

The government has spent a pretty penny on me I am sure between the two surgeries, but the VSG was their plan and the only one offered to me at that time (not many surgeons back in 2009 would be willing to work on a 700lbs person).

The health system in Canada has good and bad sides. It is good to know that most medical related issues that land you in the hospital aren't going to cost you a fortune, but this also means longer wait times for certain things.

I'll keep plugging away at the health system, family and perhaps looking at ways to try and earn a few dollars under the table online to cover the cost of the vitamins if need be. There really has to be a better solution. In my mind if I can get the government to cover the vitamins (they used to many years ago, but people took advantage of it and of course they put a stop to that), then it would be a precedent for others in my shoes to use in their fight for coverage. I can't be the only person.

There was a notice I received several months back saying some limited time use vitamins might be covered, but no one seems to know a damn thing about that. I'm wondering if I might be able to fit within the "short bowel syndrome" criteria given that that is more or less very similar to someone with the DS. Although it only lists A, B6, B12, D, E and folic acid. If I could get any or most of those that is better than nothing, especially if they will order the dry formulated versions in high dosages.

Tomorrow I'll spend all day on the phone and quite literally I won't take no for an answer.

 

[Pattycake813]

Welcome and good luck!