Tuesday, March 22, 2016

Finally!!!! New hope, another new doctor, but this time a doctor who has answers for all my issues dealing with my Secondary Hyperparathyroidism

Well, I am not even sure I had mentioned that I was to see yet another new doctor yesterday because honestly, I've posted that so many times before and then nothing came of it that I just didn't even want to go to this doctor. I was referred to him last week when I went to see the Endocrinologist that didn't seem to have a clue what to do with my hyperparathyroidism plus this doctor is a Gastroenterologist, so I figured, what can he say about hyperparathyroidism that nobody else can say, plus I had seen "the top of his field" down in Pensacola, Florida and he was clueless so just what can this doctor know that the rest haven't. I've been been suffering a severe sinus infection, as well has kidney stones and just was in lots of pain and just didn't want to go. I almost cancelled the appointment to be honest but I didn't because I figured if I had any idea of going back to Dr. Trippe I better keep the appointment so we got up at 4:30 again and went to Montgomery. My appointment was at 8:00 a.m. again and I just don't do mornings since I've been so sick and weak. I am so thankful this time I took the effort it took to get up there. First of all let me tell you this doctor's name, Dr. Viplove (Vic) Senadhl and he is a specialist in Gastroenterology & Liver Disease, Expert in Crohns, UC, Pancreatitis, Cirrhosis, Liver Transplant, GI Motility, IBS and Colitis, yep all that!!!! but more importantly, he trained at Johns Hopkins University in just exactly what I have!!!!!!!! He was in practice at UAB but decided to move to Montgomery and open up  his own practice to help more people like me that have severe gastro problems from gastric bypass! How cool is that???? His nurse practitioner came in first to find out why I came to see Dr. Vic, lol. We could see that poor lady was overwhelmed by all we had to tell her and we gave her the shortened version of all I've been through in the last three years. I told her finally that honestly I had no idea why we were there, what we hoped to find out from him, that we were there because we were told to come and after so many other dead ends we kept hoping that one day we would  find someone who might "get it". She left out to talk to Dr. Vic, as he is called due to his name, and Hamp and I were talking and we both had decided that this would be another dead end visit. The door opened and this very nice looking doctor, definitely of Indian descent opened the door and said words I will never forget "I know what is wrong with you and I know how to fix it". I said "you do????" He said yes, I do and I questioned him again if he were for real. He assured me he was for real and he did indeed know how to fix it. So we just sat there stunned and said, okay, how are you going to fix it. He started out by telling me that first of all my TPN (after looking at the bag himself) was all wrong. He said that Dr. Young, my PCP, had done his best but he just had no idea what somebody with my problems really needed, so in essence the TPN wasn't helping me at all but actually hurting me. He told me he would call Dr. Young himself and ask him if he would agree to turn my case over to him and let him redo  my TPN and care in general. I told him I was sure Dr. Young would not hesitate to do just that because he had pretty much done all he knew to do to help me and was struggling himself to know what to do next. Then he told me that once he got the proper TPN started with different things in it that I needed that I would begin to feel much better pretty soon but that wasn't all I needed. He is adding a treatment through my port also that will be drug that will help to treat my hyperparathyroidim that will help straighten out the mess my parathyroid has made trying to compensate for the imbalances in my hormones in my body, especially the calcium, which is also the culprit for my kidney stones and severe pain in my lower back. Too much calcium is spilling into my blood stream which goes to the kidneys and that causes stones or sludge in the kidneys that cause extreme pain. He also told me that I have to change my way of eating forever. Not a diet at all,  just a change in the things that I eat because I will never be cured of hyperparathyroidism because of the damage that is done by gastric bypass over time that causes it. He said reversing my bypass would do no good at this point nor would he recommend it anyway. I have gastroparesis, which several people had mentioned to me as a possibility, but that it too will be treated by the change in eating and just getting my whole body well again. I will be getting much more protein in my TPN as well the complex vitamin B's that my body has not been getting. plus upping the phosphorus much more to improve that faster. He said it's not about the number of calories I was getting in my TPN, all tha tis doing is putting pounds on me that I don't need and are doing me no good. I have gained 20 pounds from the TPN but yet I have been getting sicker since I've been on it. I felt that was happening but nobody believed me, they thought I just didn't want to gain weight. I don't mind gaining a little weight if it were doing me a lot of good and if that was the answer but he said it's not at all. He wants to decrease my weight again because getting fatter would only cause me other health issues that I had before, which is why I had gastric bypass in the first place. Basically my diet from now on will be low fat,low fiber, especially the fiber. Fiber isn't good for anybody with my problem. He said I need antibiotics for two weeks but that will be through Dr. Young, not him since that is for infection that I have that he isn't geared to treat. WOW is all I could say. I felt like I had won the lottery yesterday. I found a doctor that knows what he is doing and exactly how to do it. Now, my goal is even  more important to me, to find others who have had gastric bypass, of any kind! and let them know what is going to happen to them at some point. It doesn't mean they will all get as sick as I have if they happen to have a doctor or doctors that understand what kind of blood work and test that need to be done for a gastric bypass patient so that they can catch all this before it gets so far advanced as mine has. There is hope people!!!!! I really hate that it took me so long to finally find help, to find a doctor that actually trained in this and knows how to handle it. The thoughts that there are others out there that have either passed away from this without anybody knowing why they even passed away or they are as sick as I am and feel as helpless and I have. I had just given up really. I had decided that I would never get well again because nobody even knew for sure what is wrong with me and even if they do they don't know what to do about it. This disease is devastating.It takes a toll not only on the patient, but the patients family, friends, their social life, their world. I have things coming up that are so important to me in the near future that I felt like I would not even be able to do. My 50th high school reunion is in May and I want to go so badly but I felt like that by May I would not even be able to get out of bed at all or would be in a nursing home. The strain of taking care of me full time is wearing on my sweet husband. We have a 17 year old foster daughter that we both love and adore and want to live long enough to see her graduate high school and go on to college and become whatever she wants to be but I honestly didn't think I would even live long enough to see her graduate. I've been sick the two years we've had her and unable to be the mother I want to be to her. I have felt so much guilt about that, I wanted to be there for her but usually I'm in bed so sick I can't get up. Now I have hope. I am 67  years old so God  has never given me a time line to live but I had felt that I had pretty much met my timeline and wouldn't live to see any of the things that are important to me. I have six grand kids that I want to see grow up, graduate & get married and now maybe I can. Today I have hope, more hope than I've had in three years. My healing won't be instant like I had hoped but it will come, of that I am positive.If you are reading this and want information on going to see Dr. Vic please get in touch with me. He doesn't have a link I can post here yet because he hasn't been in his new practice long enough to have all that established yet but I will definitely get you to him if you need help. Stay tuned for the updates as I change my whole regimen of treatment & life. I can eat anyway I need to eat to maintain good health. It's not a hard diet to follow at all and I won't be giving up anything much that I hadn't already given up over three years of finding out what hurt my stomach and what didn't. I can eat normally within a few constraints. So I invite you to travel this road with me and see what God has in store for me.

3 comments:

  1. So happy to hear this!- mandy

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  2. Carol, I was diagnosed with gastro paresis in spring of 2014, I lost over 30 pounds in 6 months. It's a journey of finding foods that will work for you and trying all kinds of drugs and different diets. I had emergency thyroid surgery in Nov. My parathyroid glands had quit functioning, I had a goiter and a mass inside the thyroid that was growing a bone. The parathyroid glands had sucked all the calcium out of my body, Now with a bone density problem so bad that I can't have a much needed back surgery. So I go to pain management for meds and injections when needed. I had the left side of my thyroid removed I will have to check the thyroid and calcium levels every 6 months. My primary care doctor has put me on two drugs that helps the pain. I have gall bladder like pain all the time. I take two drugs for nerve damage that helps the gastro paresis. I am so thrilled you found a doctor that can help. last resort is they can put in a pump that helps the stomach muscles to do their job. Thanks Pat Hardee

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    1. Pat it's amazing to find a doctor who knew exactly what the problem is and how to handle it. I will never be "cured" but it can be totally controlled, which I can live with. Gastroparesis had been mentioned to me but the gastro doctor I was going to at the time told me that he couldn't diagnosis it without the gastric emptying test, which I tried to do but couldn't finish it due to a bad UTI. I just could not lay there that long. I was told since I didn't finish the test the doctor could not diagnosis it. Well, Dr. Vic said he didn't need a test, he knew I had it and the diet he told me to follow will help with that. It's not a diet really just some changes in foods really. Yes the parathyroid does reek all kinds of havoc as you and I have found out. My kidney stones I am passing are due to the excess calcium dumping into my kidneys which will be fixed once I get the new drug started today. It was delivered earlier today and the home health nurse will come after Hamp gets off work to show us how to hook it up. This one has to be done on an IV pole. I have one already that we bought thinking the TPN would work on it but it wouldn't, it was too heavy. Dr.Vic cut down on calories I was receiving but added a lot of B complex vitamins and upped the phosphorus, which you know I've struggled with now for three months. My primary care doctor gladly turned my TPN feeding & care for this disease to Dr. Vic because he had already told us he was just at a total loss as to what to do for me. Why did they do surgery on your parathyroid glands? Did you have tumors on them? Most people do that have primary but my hyperparathyroidism is secondary, caused by my gastric bypass so I don't have tumors that could be taken off. Your parathyroid definitely sucks the calcium out of your body. I have severe osteoporosis also from the parathyroid disease. I've also lost most all my teeth and was in the process of having dentures made before I got so sick but the dentist can't finish until my health improves. My hair has gotten very thin also. So far I'm still not going to a pain clinic and hope to avoid that if I can, there isn't one near me, it would be a long drive and I am just not up to it. I am taking hydrocodone which my primary care doctor gives me. It pretty much keeps me manageable unless I'm trying to pass a kidney stone!!!! That is the worst pain ever. My goal is to get my whole life back, be off pain meds and control my gastro problems with the new doctor. I am so very blessed to have found this doctor. He is building a new clinic devoted to things such as I'm going through and he has just moved to Montgomery, Al, which is still about 98 miles from us but I will drive it for sure, he's worth it. I ask Dr. Vic about the implant to control the gastroparesis but he said I won't need it once we get everything under control and my I start avoiding the foods on the diet he gave me. Doing that won't be a problem for me anyway, I have already pretty much quit them anyway because I realized certain foods hurt my stomach too much to eat them so I just don't. I can't eat meat much at all. According to the diet he gave me the only eats I can eat really are chicken, fish and hamburger. Fibrous meats like roast, steak, chops, have to be left off. He said fiber is terrible for anybody with gastroparesis. Not sure what your doctor told you. I'd be glad to share the page he gave me if you want it. I could copy and paste it if you're interested. Good luck and thank for reading my blog!!!!

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