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Post by patngin on Oct 9, 2014 21:09:58 GMT -5
I had a BPD-DS in 2000. I lost a lot of weight. My first problem was malnutrition in 2007. It ended up with me in a coma and both legs amputated. Now I have had to have Open Heart Surgery which did not go well due to too much calcification of my heart. I was doing pretty good, holding my own now in the last 8 months I started losing weight again. I have lost 30 lbs. in 8 months I take lots of supplements and I am trying to eat 2000 calories at least each day. I don't know what is going to happen. They are still looking into it. I have other problems and I am not sure I could make it through a revision considering my heart situation. I wish I had never done this but it sounded like the answer to my prayers when I did it. It was fairly new at the time. My wife also had it 6 months later and she has gained weight lately but she has a problem with about 6 bowels movements every morning. She has been gaining weight lately but she has been feeling better since she was able to gain a little. We are 62 and I 64. I need to have something happen soon. Dr.Lee Trotter saved my life in 2007. They didn't think I was going to make it. They had given me an infusion of albumin and I stopped breathing. They had pretty much given up on me and told my wife not to expect me to make it. They intibated and put me in a medically induced coma. My heart stopped pumping blood out of my feet, thus amputation. Dr. Trotter was able to get me on the right track, he recognized what was going on and got me on supplement and protein through my feeding tube and I did well or at least I pulled through. He also amputated my legs below the knee and even though he was a bariatric surgeon his skill made it so I was able to be fitted with prosthetics and could walk normally again. I even went back to work, tho not at the same job but worked for 2 years. I can't seem to stop losing weight now and I don't know why but malabsoption is suspected. I am 14 years into this and really don't want to die and leave my wife behind. I hope I can get this straightened out. I will stop now. All I can say is Dr.Trotter said this particular operation should not have been given to us since we were only 100 lbs overweight. It was too drastic and was meant for someone more like 200 or more over. This surgery was performed on me by Dr.Adrian Heap also my wife 6 months later. She has different problems like 4-5 bowel movements every morning. Dr. Heap told us we only had to take a multiple vitamin and we would be fine. Dr. Trotter is going to try to get me on the right track one more time. I live in Spokane, WA and Dr. Trotter has moved to Rapid City, S. Dakota but he has a special place in his heart for me I believe and if he can't get me turned around will do the revision. I have a lot of trust in Dr. Trotter and I think you can understand why. When everyone else had given up on me he didn't and that is why I am here today. I forgot when I was really sick I got down to what would be 120 with my prosthetics. With Dr. Trotters help I got back up to 173 last fall. I now weigh 143.
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Post by newyorkbitch on Oct 9, 2014 21:22:42 GMT -5
Hi there,
I also had the DS in 2000.
Could you let us know what you are eating every day and what vitamins you are taking every day?
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Post by patngin on Oct 10, 2014 11:34:44 GMT -5
I am eating normal meals. Normal size if not a little more. I take a multi vitamin CoQ10 Salmon Oil. I was drinking Muscle milk for protein but Dr. Trotter wants me to start drinking 2 metagenics protein shakes a day. I was taking B12 5000mcg daily Dr. Trotter wants me to switch to Solaray 1 2000mcg per week. I eat slowly but I can eat quite a bit.
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Post by newyorkbitch on Oct 10, 2014 11:54:15 GMT -5
I'd like to know what you are eating - as in keep a record of everything you put in your mouth for one week. How many grams of protein are you consuming every day? How many carbs? What kinds of carbs? Start by telling us what you ate so far today and what you plan to eat for the rest of the day. Be specific, and include quantities as best you can. I don't know what "normal meals"means for you - it means different things for different people. Are you eating 5 times a day (you should be)? Are you eating protein every time? How much? Also your vitamin intake is dangerous - you are so extremely below what you need. I don't know who this Trotter is but you are getting extremely bad and dangerous advice about vitamins. You need to find the board here on this site which discusses what DSers need in terms of vitamins every day. And you should go to vitalady.com and read what she recommends for DSers. It is no surprise that you are in bad trouble - I suspect you are extremely deficient in many areas and have been for a very long time. You might also want to take a look at the discussions here about protein shakes and what people are using. When was the last time you had full bloodwork done? Do you have copies of the lab reports? Do you have an internist locally? There are so many things you need to figure out a change before you consider a revision. I am eating normal meals. Normal size if not a little more. I take a multi vitamin CoQ10 Salmon Oil. I was drinking Muscle milk for protein but Dr. Trotter wants me to start drinking 2 metagenics protein shakes a day. I was taking B12 5000mcg daily Dr. Trotter wants me to switch to Solaray 1 2000mcg per week. I eat slowly but I can eat quite a bit.
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Post by bboop on Oct 10, 2014 12:32:07 GMT -5
Please get us the information NYCB asked for and we can give you some ideas.
Have you ever taken Creon? It's been a life saver for many on this forum.
Your wife may have colitis...I did and got treatment now I have relatively normal BMs, for a DSer and not near the frequency that she has...I did at one time have more.
I feel as if you two have been left out of the DS information pool, so come on it, we are here to help.
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Post by Melinda on Oct 10, 2014 12:38:21 GMT -5
Pat,
I am SO glad you came to this board! Thank you thank you for coming here per my emails. I know you will get lots of information thrown at you at one time and it may seem overwhelming but please hang in there and stay with it, ok? We want you HEALTHY! It may seem like an abundance of questions but wow, it can and will save your life.
Again, welcome. You'll be glad you came.
Hugs to you,
Melinda
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Post by patngin on Oct 10, 2014 12:53:41 GMT -5
I forgot I also take 2000IU of vitamin D per day per Dr. Trotter they had me on 50000 IU
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Post by newyorkbitch on Oct 10, 2014 13:59:19 GMT -5
I forgot I also take 2000IU of vitamin D per day per Dr. Trotter they had me on 50000 IU You need much more!! You are not being well advised.
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Post by caprice on Oct 10, 2014 14:30:08 GMT -5
I forgot I also take 2000IU of vitamin D per day per Dr. Trotter they had me on 50000 IU For some perspective, I take 100,000 IU of Dry D per day, and my latest labs (just 2 weeks ago) showed me just a tiny notch above the high end of normal range (107, and, per the lab - 100 was the upper end). I myself am delighted at that number, considering how difficult it is to build it once you're in the tank. I did promise my doc that I'd drop it to 50,000 per day, but I sure won't drop the intake any further than that. I'd also be willing to bet that your 2,000 IU vitamin d's are oil-based, not dry. If that's the case, you're not really getting ANY vitamin D. Please consider upping your intake, and make sure it's "dry", not gelcap.
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Post by Melinda on Oct 10, 2014 14:41:21 GMT -5
Pat,
Just for an example, and I realize we are all very individual but bear in mind I have NOT had the malnutrition issues or the serious health problems you have faced, here is what I take on a daily basis:
2 Centrum Specialists for Energy (that's the multi vitamin)
1 BioTech or VitaLady Dry D (50,000 IU every day or at the least, every other day, depending on my labs
1 Dry A
8 CitraCal (630 mg Calcium Citrate per dose) 2 pills = one dose, I take 4 doses broken up during the day
2 Garden of Life Primal Defense Ultra Probiotic (1 a.m., 1 p.m.)
1 zinc every other day
This does not include that I get iron infusions (Venofer) every other year through my hematologist that I see twice a year. It also doesn't include prescription medications that I take like synthroid and prevacid.
I have been fortunate. I've always supplemented well and my labs have been great except for iron, which is why I've always been seen by a hematologist. I also regularly see an endocrinologist. I get my labs drawn yearly for the complete ones, ordered by my surgeon (it's a good 18 vials). I get other labs drawn more regularly like thyroid function, iron, and whatever my PCP thinks might be necessary.
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Post by newyorkbitch on Oct 10, 2014 15:11:55 GMT -5
Dr Trotter is not a DS surgeon.
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Post by patngin on Oct 10, 2014 20:18:43 GMT -5
Well my labs showed my Vitamin D at 47, 17 above the low end Vitamin B12 greater than 2000 high is 1000 My Blood tests were bad very high WBC slightly low RBC really high neutrophils. I also have Hep C. Neutrophils where real high. Dr. Trotter is the only doctor that did anything to save my life in 2007. He said it was the worst case of malnutrition he had seen. After I got straightened out from that I was fine for 7 years my weight went from 120 to 170 gradually. I don't know if he does the DS I know he has before but he prefers other such as the Roux en Y. I just had complete blood work and my PCP is an internist. I went in today to check my weight and I had lost 3 more lbs in 10 days.My regular doc will be back Monday and I'll see what he says about Labs.
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Post by newyorkbitch on Oct 10, 2014 20:43:07 GMT -5
What did you eat today? Details please.
Please get a copy of your labs and post them here. This is very important.
Trotter may have "saved your life" but he is not advising you well now.
Do you have a hematologist ?
When you say you were malnourished - does that mean you were protein malnourished?
How long is your common channel?
Have you discussed taking croon with your internist?
We cannot help you if we don't know all this information about you.
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Post by patngin on Oct 10, 2014 20:51:57 GMT -5
I am a little hesitant to post all my stuff online. I have copies of all my labs and I got a copy of the operative report from Dr.Heap. Actually they didn't want to send it to me so I got it from the hospital.
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Post by newyorkbitch on Oct 10, 2014 20:56:02 GMT -5
You don't have to include your name. Just what your labs say. How can we help you if we don't know what's going on?
What did you eat today? How many times do I need to ask you?
Pat people here want to help you. But you have to read what people are saying to you and you have to give us information in order for us to help you.
I'm not going to keep asking you the same questions over and over. You obviously came here for help and you will get it, but you have to cooperate too.
If not, what is the point?
Read your op report and tell us what your common channel length is.
And answer the other questions as well.
What are the most recent labs you have copies of?
I'm 14 years post-op too. My common channel is 75cm. I have never been malnourished…but I was a compliant, informed patient. I always took all the vitamins and supplements I needed, got regular bloodwork, made sure to eat loads of protein every day.
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Post by patngin on Oct 10, 2014 23:46:32 GMT -5
Today I had a small bowl of Udon noodles fried with mushrooms and onions. 3 thick slices of Brausweiger 4 slices of Swiss cheese. 3 hamburger bun halves with hamburger and manwich. Haagen Daz ice cream bar. My protein came tonight so I will start that tomorrow. 64 grams plus what ever 28oz of milk has. I had one today but it was Muscle Milk not Perfect Protein from Metagenics. 2 Perriers and 2 Diet cokes.
2000 IU Vit D 1multiple vitamin 1 coq10 1 salmon oil cap 10mg lisinopril 8 10-325 Hydrocodones 1.0 mg Alprazalom
The Hydros are because I have a lot of stump, hip and back pain. Besides the prosthetics I broke my hip and my shoulder and I have scoliosis. I got up at 8 and will be going to bed at 10:30
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Post by Leonie on Oct 11, 2014 5:37:19 GMT -5
Hi I took the liberty of logging your days food into MyFitnessPal. I am not familiar with your exact quantities, but this is what I came to. I am counting that you had
Carbs 95 Fat 72 Protein 73
That is less than half the amount of protein you should have had! I would strongly suggest that you plan on having seven meals of 20-30g protein per meal. That could be three shakes and four meals.
Your vitamins are woefully inadequate. Go to Vitalady.com. Send her your complete labs and GET ONTO THE PROGRAM!!!!!!!!!!!!!!!!!!!!
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Post by newyorkbitch on Oct 11, 2014 6:35:57 GMT -5
Pat you need to aim for 150g of protein everyday. You will need to log all your food into myfitnesspal to track. You need to drink 64 oz of water every day. You need to eat some complex carbohydrates, but not until you get 150g of protein in. You need to get on vitalady.com DS vitamin program It is no wonder you are in trouble, with what you are eating and the lack of vitamins you are taking. I want to know how long your common channel is, and I want to see your most recent labs. It is no wonder you were malnourished after your DS, if this is how you ate and the vitamins you took for all those years. We are all glad you are finally here - but now you need to listen to all of the experienced DSers on this site and start paying attention and taking care of yourself. I suspect you do not a need a revision at all - you need to eat correctly, take proper vitamins, and MAYBE take creon if all of that is inadequate. But IMMEDIATELY you need to get in at least 150g of protein every day, and IMMEDIATELY get on vitalady.com vitamin program. READ THIS ENTIRE LINK: www.vitalady.com/DS_90day_Reg_pg2.htmThis is what I take every day, but I take 100,000 iu Vit D Why did you reduce your D? And what form of D are you taking? I bet it is not dry D3.
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Post by patngin on Oct 11, 2014 11:06:51 GMT -5
I was taking 50000 IU gel caps. I also have read that high doses of Vit D can cause calcification of organs. My heart surgeon said I had the most calcified heart he had ever seen thus the reason my aortic valve replacement did not go well. To add all these attachments it will have to be in 4 posts because there are about 12 files. Here goes I guess I will trust you people. LTrotter0001.pdf (22.08 KB) LTrotter0002.pdf (13.77 KB) LTrotter0003.pdf (18.05 KB)
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Post by patngin on Oct 11, 2014 11:09:03 GMT -5
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Post by patngin on Oct 11, 2014 11:10:02 GMT -5
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Post by patngin on Oct 11, 2014 11:11:22 GMT -5
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Post by newyorkbitch on Oct 11, 2014 11:12:15 GMT -5
I was taking 50000 IU gel caps. I also have read that high doses of Vit D can cause calcification of organs. My heart surgeon said I had the most calcified heart he had ever seen thus the reason my aortic valve replacement did not go well. To add all these attachments it will have to be in 4 posts because there are about 12 files. Here goes I guess I will trust you people. View AttachmentView AttachmentView AttachmentYou have never taken Vit D in the correct form. You do not absorb D!! You need to get on Vitalady regimen NOW. Trotter is NOT knowledgeable about your DS malabsorption issues.
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Post by patngin on Oct 11, 2014 11:12:50 GMT -5
OK what is your diagnosis doctor. Also why was I doing so well for 7 years even gaining weight occasionally till the first of this year when I started losing. I didn't even realize it till my shorts started not fitting. I went from 38s in Jan to 34s now.
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Post by newyorkbitch on Oct 11, 2014 11:21:25 GMT -5
I was taking 50000 IU gel caps. I also have read that high doses of Vit D can cause calcification of organs. My heart surgeon said I had the most calcified heart he had ever seen thus the reason my aortic valve replacement did not go well. To add all these attachments it will have to be in 4 posts because there are about 12 files. Here goes I guess I will trust you people. View AttachmentView AttachmentView AttachmentYou are protein deficient, anemic, and calcium deficient. You need to test PTH, prealbumin, and ferritin
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Post by newyorkbitch on Oct 11, 2014 11:23:42 GMT -5
OK what is your diagnosis doctor. Also why was I doing so well for 7 years even gaining weight occasionally till the first of this year when I started losing. I didn't even realize it till my shorts started not fitting. I went from 38s in Jan to 34s now. You are starving yourself. Your D is not bad. But you need some D in the CORRECT FORM. You need to see a hematologist, you probably need iron infusions.
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Post by patngin on Oct 11, 2014 11:37:32 GMT -5
Well the protein I am going to start is apparently the right kind of protein. Unipro Perfect Protein by Metagenic.. Pure Micro Filtered Whey Protein Isolate. Thats what Trotter put me on in the first place I changed because of the cost but am back now. It's not listed in Vitalady but it is the same as the ones she has. I found it at Vitacost for $35 but only in vanilla. I am on a fixed income being disabled and starting in Jan unless my wife can get on Medicare because of disability her insurance will be $1100 a month.
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Post by newyorkbitch on Oct 11, 2014 11:52:55 GMT -5
Well the protein I am going to start is apparently the right kind of protein. Unipro Perfect Protein by Metagenic.. Pure Micro Filtered Whey Protein Isolate. Thats what Trotter put me on in the first place I changed because of the cost but am back now. It's not listed in Vitalady but it is the same as the ones she has. I found it at Vitacost for $35 but only in vanilla. I am on a fixed income being disabled and starting in Jan unless my wife can get on Medicare because of disability her insurance will be $1100 a month. You need iron infusions. You need to be taking lots of calcium citrate. You need to log your food and get up to at least 150g of protein every day.
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Post by patngin on Oct 11, 2014 12:19:07 GMT -5
So what did you think of the operative report??
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Post by newyorkbitch on Oct 11, 2014 12:19:47 GMT -5
It's not only about protein shakes - it's about your diet. You need to be eating more protein, drinking more water, eating some complex carbohydrates.
Why has your weight changed? Because you're aging, because your hormones change, because your absorption changes over time (up and down)…and maybe other things are going on that need to be dealt with. Maybe you need creon but that would be AFTER you try all these other things.
But you MUST increase protein and fluids, you MUST take calcium citrate, you MUST get iron infusions. You need to see a hematologist.
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