Very, Very good day today at the doctors office!!!!!!!!!!!!!!!!!!!!!!!! Should be an encouragement to any of you that might have Secondary Hyperparathyroidism

Wow what a great day today at Dr. Senadi's office!!!!! He was truly amazed to see how well I have done in such a short time. He said I looked fantastic. I hugged his neck and told him how thankful and humbled I was that he saved my life when all the other specialist couldn't even find anything wrong. I started crying, I was just so emotional about it all and he said, "stop it, your  making me tear up too, lol" I told him I couldn't help it, I just would always love him for saving my life. I think we hugged at least three times! Then we talked to him and asked him the all important question I was dying to know the answer to, will I ever be cured or is it something I will deal with the rest of my life. He told me I definitely would be cured!!!! Those are shouting words right there people!!!   He said if I continue improving as fast as I have already maybe in a month we can come off of TPN and see how things go!! He said at some point I will be able to stop the Calsitrol also but not right now, I still have a way to go. My PTH level was still 135  but going down. Normal range is up to 60 so I have still got a way to go. My PTH level has to get in the normal range and stay there for a while and my calcium has to start working the right way and my vitamin D level has to come way up still but all in all I had a great doctors visit today. I went shopping to a little shop that is near the hospital that I used to shop at a long time ago, then we went to Sam's and bought our months big groceries, then we stopped at Ruby Tuesday's and ate on the way home. Had to pick Rachel up from color guard practice and then found out she is out of school tomorrow for some strange reason for a "spring break" day. We had just had spring break a month ago! She asked if a friend could come over and spend the night and I told her yes so now I have two teenage girls but I am happy and content. My world is finally coming together again and I know that now I have a chance to live out the rest of my life in relatively good shape. I hope this has inspired somebody that there is hope and help out there, you just have to keep on keeping on even when you can't even see the tunnel, must less the light at the end of it. 

Tomorrow is a big day!!!!!!! I return to my new Gastroenterologist to see how I'm doing!!!!!!!

Well, I know how I'm doing actually, I'm way, way better than when he saw me a month ago. He's going to be very happy to see me I'm sure when he see's how much better I look and feel. I cannot tell you all how much this doctor has done for me. I am also going to ask him if he has any idea of any doctors network or anything like that of doctor's that are trained to recognize and treat Secondary Hyperparathyroidism. I have several people that have followed my blog and have decided that they also have Secondary Hyperparathyroidism because they also had gastric bypass in the past and have been sick now for a long time and I would like to be able to recommend a doctor to some of you in an area near you so you can get diagnosed and treated.; I understand the frustration that goes with being so sick for so long and not being able to find anybody that knows what is wrong with you. It is pretty easy to tell you that you have it if you go get a PTH test run and it's way high and your calcium is borderline low or low. That's a sure sign of Secondary Hyperparathyroidism but I'm no doctor or nurse but I am a patient that has gone through more than one person should have to go through to find help. Honestly I can tell you that out of the 8-10 specialist I have seen in the last year and a half, not one of them was ever truly concerned about me. They would run their test, never one for the PTH level though! and then tell me they couldn't find anything wrong with me. That's when the feeling started that they were insinuating it was all in your head! I can't tell you at the times I have left doctors offices in tears, just deciding not to go to another doctor because it was useless. The last one, the one who told me to "just go home and die" was the last straw for me. He was upset that I wouldn't agree to actually move from my home in Alabama to where he was located in Pensacola, Fl. so that I could get TPN feeding. I told him we just could not do that and that's when he told me I should just go on home and die because that was what I wanted to do if I wasn't willing to move down there! I came home and asked my PC doctor about it, could I get TPN here and he told me of course I could and he ordered it. It turns out that I wasn't getting what I really needed in the feeding but that was because he ordered what a normal person would need and I wasn't "ordinary" because I have hyperparathyroidism but I can't fault him, at least he did something to keep me fed and kept me from dying of malnutrition, where I was headed. Then when I found Dr. Senadhi, he asked if her could take over my TPN feeding because it wasn't what I actually needed and of course I told him I was sure my PC doctor would not be offended at all to turn over my treatment to Dr. Senadhi. And as you all know, I FINALLY had found THE doctor that understood what I have and how to treat it and as you all know who have followed my journey that I am improving every day and getting stronger and stronger and beginning to live life again instead of existing and living in my bed 24/7. I hope that this blog somehow helps some people find hope and treatment because I know how it feels to feel hopeless and feel like life is over for you even if you don't die, you are unable to live a normal life because you are too weak and sick to even get out of bed. I will continue to blog as my journey continues though because it's not a journey that is over just yet, it may not ever be over, I'm not sure, but I will continue to blog and tell you all exactly the truth always, even if it's not what I want to say, in case this thing never goes away for instance or I relapse or whatever. You have to know the truth if you are struggling with this horrible disease!!!

Please look at this very informative information that was posted on my FB page from the Norman Parathyroid Clinic about the effects of low calcium and hyperparathyroidism

I am going to post this information from the Norman Clinic because it very shortly explains to people how just a very minimum low calcium level  can effect your body and the calcium level is controlled by the parathyroid glands. Look at this information, look at the graph they have and see the levels of calcium and what it can do to your body. I just want to get this information out there to everybody possible because it almost killed me. It doesn't kill you quickly but it will kill you and it will make you wish you were dead a lot of the time because of the horrible symptoms that you have when you have this disease and it goes undiagnosed for years. The longer it goes on the worse your symptoms become. Life becomes a living hell for you. You go from doctor to doctor, too sick to even go to them usually, just hoping to find one that can find out what is wrong with you only to be told over and over that they just can't find anything wrong with you. If you are going through that or know somebody who is please, please show them this information and encourage them to go get a PTH test done. Any doctor can do a PTH, your PC doctor can do it. If it's high and your calcium is low you are in trouble. You then have to find a doctor who knows how to treat it. That should be simple but it's not! If you read on the Norman Parathyroid Clinic's website even they will tell you that many, many Endocrinologist, doctor's who should recognize it right away and treat it don't even think about it or tell you they know what to do. I know that because I went to one who ask me why I was there. I told him my PC doctor did a PTH test on me because of my husband's research online that finally suggested that I had SHPT and that Endocrinologist looked at me and said "No that's not what I treat". I was just shocked! I thought, great, where do I go now! Thankfully he did do the one thing for me that has changed my  life. He referred me to Dr. Viplove Senadhi, a Gastroenterologist who just happened to train at Johns Hopkins in the field of helping people who had gastric bypass find out that they now have Secondary Hyperparathyroid Disease. He said he understood everything I had gone through for three to four years and he knew how to fix it and it was an easy fix!!!!!! Those words were magic to me!! I couldn't believe it, after all these years I finally, finally walk into a doctors office that didn't immediately tell me I had to have tons of test, tons of blood work etc. and then maybe they would know what my problem was. He didn't order the first test. He looked at my PTH test I had from my PC doctor, my calcium level and knew immediately what was wrong with me. He immediate began treatment the next day and each day I have continued to improve,  grow stronger and get my life back!!!! YES you heard me correctly, I said "GET MY LIFE BACK" . Those are words I know many would love to hear also so please feel free to share this information, share my blog, have them contact me personally, anything, just help me get the world out about this terrible disease that is called the silent killer because it slowly kills you but your family never knows why you died.  So here is the information I told you about and hope this helps somebody today!

Even "mild" calcium elevations can make you miserable! We reviewed data from over 20,000 patients with parathyroid disease treated at our center, and found that the calcium level did not predict the severity of parathyroid disease. That is, people with calcium levels that were just above normal had as many symptoms and complications from the disease as those with very high calcium levels. Last week I presented these findings at a national medical society meeting. In the graph below, I compare patients with moderate to very high calcium levels (Calcium > 11) to those with only mild calcium elevations (Calcium < 11). The two groups are exactly the same in rates of fatigue, osteoporosis, kidney stones, etc. Doctors have long been taught that mildly high calcium is not that bad, and doesn't need to be treated. We need to change that thinking. Help us educate! - Dr Deva Boone

A list of symptoms of Hyperparathyroidism whether it's Secondary or Primary. This is a continuation of my post last night.

Here is a list of symptoms that you can have from Hyperparathyroidism. You can have a few of them or even, as in my case, a lot of them. I honestly have them all  because I had gotten so sick from this before finally finding out what I had. I continue doing this because of those of you who have contacted me and told me you think you know now what is wrong with you and I am doing my dead  level best to help those who have needed this information for a long time but had no idea where to even start to find it. My husband is a bloodhound online. He was just not going to sit back and allow me to die if there was help so he started searching and looking at anything that had symptoms like I have. His first big break was when my  phosphorus went so low I almost died instantly from it and I had been receiving iron infusions for anemia that  I suffer all the time; from the gastric bypass of course. That led him to the article on  The Norman Parathyroid Clinic in Tampa Florida's website. I can't say enough good about The Norman Clinic's link to Parathyroid disease. Even though they deal mainly with Primary Hyperparathyroidism because with that you have adenoma's on your parathyroid glands that require surgery to cure your problem, they also do have a good bit of information on Secondary Hyperparathyroidism, caused from gastric bypass and a few other diseases that cause you to have malabsorption/malnutrition, which in turn causes your parathyroid to over produce calcium which in turn goes into your bones, kidney's and causes you to slowly die. I spent three years extremely sick from this, nearly dying several times, just in the last four months I stood staring death right in the face when my phosphorus dropped to .9. The normal phosphorus should be in the 3-4 range. Mine was 4.3 when I started taking iron infusions for anemia and I had a reaction to the iron, which caused the phosphorus to drop drastically, which caused chest pains, trouble breathing, even more fatigue if possibly and I just knew I was going to lay in my bed and die before any doctor finally figured out what is wrong with me. I can NEVER thank God enough for finally, in a round about way because of being sent to an Endocrinologist (who should have been the one to treat it but said he wasn't able to treat it) and since that Endocrinologist was useless (I will do him a favor by not posting his name on here!) he did refer me to a Gastroenterologist who FINALLY was THE one to diagnose me without a test of any kind and tell me he knew what I have and  how to fix it. Those were the best words I had heard in over three years. His name is Dr. Viplove Senadhi, and he is in the old Goode building at Jackson Hospital in Montgomery, Alababma, Suite 801. I can supply his phone number if anyone on here needs it. He immediately started me on a treatment of Calsitrol, three times a week, through my port, added Vitamin B complex and Vitamin D3 to my TPN. Very simple, huh? I have made tremendous strides in less than a month. I can get up now and do many things I have not been able to do in years, alone! So here is the list of symptoms for you to read and decide if you need to find out if you do indeed have hyperparathyroidism either Primary or Secondary. At the bottom of this list there is a discussion about surgery to remove the adnemo's from your parathyroid glands but remember that is ONLY in Primary Hyperparathyroidism, not in Secondary Hyperparathyroidism because we don't have any adnemo's with it. The symptoms are the same though, just to clear this up before you read the list. Hope this helps!

Symptoms of Parathyroid Disease (Hyperparathyroidism)

• Loss of energy. Don't feel like doing much. Tired all the time. Chronic fatigue. (#1 symptom)
• Just don't feel well; don't quite feel normal. Hard to explain but just feel kind of bad.
• Feel old. Don't have the interest in things that you used to.
• Can't concentrate, or can't keep your concentration like in the past.
• Depression. (blog)
• Osteoporosis and Osteopenia.
• Bones hurt; typically it's bones in the legs and arms but can be most bones.
• Don't sleep like you used to. Wake up in middle of night. Trouble getting to sleep.
• Tired during the day and frequently feel like you want a nap (but naps don't help).
• Spouse claims you are more irritable and harder to get along with (cranky, bitchy). (blog)
• Forget simple things that you used to remember very easily (worsening memory).
• Gastric acid reflux; heartburn; GERD. (blog)
• Decrease in sex drive. (blog)
• Thinning hair (predominately in middle aged females on the front part of the scalp).
• Kidney Stones (and eventually kidney failure). (blog)
• High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).
• Recurrent Headaches (usually patients under the age of 40).
• Heart Palpitations (arrhythmias). Typically atrial arrhythmias. (blog)
• Atrial Fibrillation (rapid heart rate, often requiring blood thinners and pacemakers). (blog)
• High liver function tests (liver blood tests).
• Development of MGUS and abnormal blood protein levels.

Most people with hyperparathyroidism will have 5 - 6 of these symptoms. Some will have lots of them. A few people will say they don't have any... but after an operation they will often say otherwise. 95% of people with hyperparathyroidism will have 4 or more of these symptoms. In general, the longer you have hyperparathyroidism, the more symptoms you will develop.

If you've had gastric bypass and are experiencing the symptoms I have please read this about why & how we get Secondary Hyperparathyroidism

My husband copied some of the information in the Norman Parathyroid page that tells you exactly why and how we develop Secondary Hyperparathyroidism and it is so important to read this if you have had gastric bypass to read this. Also I am going to attach a link to the Norman Parathyroid Clinic so you can go there and read the whole thing. It's kind of long and the discussion about the link between gastric bypass and Secondary Hyperparathyroidism is at the bottom of that link. That's why we copied the most important part so you can read the condensed version but I advise you to go to the link and read the whole thing. I just spent time with a lady from Texas that has just realized from reading my blog that this is what she has. She has already gotten her PTH tested and it was 83, which is in the high range, and her PC doctor told her they would just watch it!!! If you have your PTH level tested and it's high, do not let them tell you that it's not important, they will just watch it.  If you can catch this disease before you get as sick as I did you can stop it with treatment. I am on Calsitrol three times a week, through my port of course. B complex Vitamins and Vitamin D3. That is the treatment for Secondary Hyperparathyroidism. Nothing complicated about it once you know what is wrong with you. Reading what I am going to post right now will tell you vital information. So here is what you need to read:

High Parathyroid Hormone Levels in Patients with Intestinal Absorption Problems, Such as: Gastric Bypass Surgery, and Celiac Sprue, and Crohn's Disease.

There is a growing group of patients who have dramatic life-long problems absorbing calcium in their diet. These patients are now illustrated on our graph in the purple area. These patients have a problem with their intestines that prevent them from absorbing calcium well. Since they don't (can't) absorb calcium from their diet, their NORMAL parathyroid glands will do what they are supposed to do... maintain a proper calcium level in the blood. There is only one thing these normal parathyroid glands can do... all four glands enlarge and produce lots of PTH which removes calcium from the bones--its the only place to get the calcium. The blood calcium is therefore maintained appropriately in the normal range (usually low normal between 8.2 and 9.2, but can be as low as 7.0) at the expense of taking calcium out of the bones. Thus these patients have very significant osteoporosis, high PTH levels, low normal calcium and high alkaline-phosphatase (shows increased bone destruction). These patients do NOT need their parathyroid glands removed. They have developed a total-body calcium deficit due to a longstanding inability to absorb calcium through their intestines.

The most common people in this purple group are 1) those who have had gastric bypass surgery for weight loss, 2) those with Celiac Sprue, 3) those with Crohn's disease, and 4) those who have had a significant part of their intestines surgically removed. Patients who have had gastric bypass surgery will eat food which then is routed around most of their stomach and the first part of their intestines (thus the term 'bypass'). Virtually 100% of these patients will have malabsorption of calcium. Thus, all patients who undergo gastric bypass for weight loss must be taking calcium and vitamin D every day or they will develop a total body calcium deficit which leads to overproduction of PTH by normal parathyroid glands leading to severe osteoporosis and the problems described here. Do NOT remove these NORMAL functioning parathyroid glands even though they are making lots of PTH... they are doing so appropriately. The treatment for these patients is to fix their calcium deficit by giving them daily calcium and Vit D pills. Note that patients who have the new gastric banding do not have this problem since they do not get their stomach and first part of their intestines bypassed. Also note that it does occasionally occur that a person has a true parathyroid adenoma and has had their stomach bypassed... But, you will typically see that these patients had high calcium PRIOR to their stomach bypass.

Celiac Sprue is a disease of the intestines that inhibits patients from absorbing certain types of foods, including calcium. Like the patients with gastric bypass, their poor ability to absorb calcium leads to a total-body calcium deficit over a period of many years. They all must be on some form of calcium and Vitamin D or they will develop severe osteoporosis as their normal parathyroid glands destroy their bones to keep the calcium in the blood in the normal range for the brain. DO NOT remove the parathyroid glands in a patient with celiac sprue. If you are not sure of the diagnosis, send them to a gastroenterologist who can biopsy the mucosa of the intestines and do a very specific test.

Crohn's disease is a disease of the intestinal lining and these patients cannot absorb calcium (and vitamin B-12) very well. Unfortunately, some of these patients also have had some of their intestines surgically removed, and they can ge very high PTH levels as their NORMAL parathyroid glands work hard to try to maintain the calcium in the normal range... they get the calcium from the only place they can--the patient's bones.

The highlighted area's are the most vital to gastric bypass patients. Now here is the link to the total article about Hyperparathyroidism from the Norman Clinic.  Please read this if you are suffering from these symptoms and believe you have this disease yet haven't gotten it diagnosed.

http://www.parathyroid.com/hyperparathyroidism-diagnosis.htm

There is light at the end of the tunnel. We may have hyperparathyroid disease but we can live a normal life after being diagnosed.

Today is a fairly good day so far. I accomplished something for someone who has no idea they are about to receive a blessing. I love doing that!!!! I used to do it often but my health got so bad I was unable to do anything for myself, must less anyone else. I'm still dealing with a UTI that is stubborn, like they all have been but it's getting better I think. I talked to a friend  in Texas that also has Secondary Hyperparathyroidism (SHPT) but so far she hasn't been officially diagnosed yet but she does have an appointment with an Endocrinologist the end of the month. She had a PTH test run by her PC doctor and it was very high yet the PC told her they would just watch it! NO!!!!!! I can't say this often enough. If you've had gastric bypass, of any kind, and you have the symptoms I have had for years, Do NOT let a doctor tell you they will just watch it. It will not get better, believe it, it will only get worse. You may have to go to many doctors to find the right one (I'm going to be working on that when I see Dr. Sandahi at the end of the month). It's sad you have to do that, I know, I did it for three years. If  you are exhausted, not just tired, I mean totally exhausted all the time, have pain in all your bones, constant UTI's, just totally sick all over, I want to help you find help if I can. I'm going to ask him if he has any idea or knows of any of his colleagues from Johns Hopkins, that understand this disease and know how to treat it. If he does, I will ask him to help me connect people if possible. I totally understand the frustration of going from doctor to doctor and still getting no answers yet you know you are sick! I can't tell you the times I did that. I'd go have all their test and they couldn't find anything so they ended up telling me various things such as it will go away in time, I just can't find anything wrong with you (that's when they insinuate it's all in your head!) and you leave the doctor in tears. I have told my husband so many times I was just going to give up and die as the last doctor told me to do. He said I didn't want to help myself, LOL. Is that a joke or what????? I wouldn't have drug myself to doctor after doctor, hospital after hospital, test after test, if I wanted to come home and die. I can tell you the depression that comes from it. I can tell you the tole it takes on your family & your caregiver, I can tell you how many times I honestly did believe I would just end up dying in my bed and nobody would  ever know why. That's how frustrating SHPT is. I know of sweet, precious friend that was in my support group after gastric bypass that I started searching for when I became so sick and I searched on the internet to find her since I had lost contact with her. What I found was her obituary!!!! She was seven years younger than me, a beautiful woman and such a gentle soul and she died and nobody knew why. I finally found  her daughter on Facebook and ask her what happened to her mom that caused her to die and she told me they never knew for sure. They guessed at many thing but in the end her kidney's shut down and she died of renal failure. I didn't know then what I know now but now I have no doubt that sweet Mary died of SHPT because it was never diagnosed. That is so sad to me. She didn't have to die if some doctor had known the connection to gastric bypass and Secondary Hyperparathyroidism. I still have four or five friends out there that I can't remember their last names that I would love to find to see if they are sick yet and to tell them about SHPT. I imagine that if I'm so sick from it and we all had it at the same time, one already passed away from it, it is so important to tell them this but so far my search for these friends isn't going well at all. I need to remember last names but I just can't. Also, if you go to an Endocrinologist, as I did, that doesn't even know what SHPT is, you're at the wrong one, find another one. I read on the Norman Clinic in Tampa, Florida's website, which is a wonderful website ( I posted a link to it below)  that even many endocrinologist don't understand or diagnose it because it's just a hard disease to diagnose. You can go to Norman Clinic's link I just posted and learn as much as I have about SHPT. They don't have a whole lot about Secondary Hyperparathyroidism but they do discuss it some. The reason it isn't discussed much is because it's not common to have it but if you've had gastric bypass that is exactly what you have or will have because it's caused by the gastric bypass. But........ there is hope. I am getting treatment now and I am beginning to get better each day. Oh I have bad days still but mostly I have good days. I hope this blog is encouraging somebody out there that there is hope, you can get help and you don't have to die. Please keep trying to find a doctor that can will treat you for this disease!!! http://www.parathyroid.com/

Good report at the Hematologist today!!!! Life with hyperparathyroidism is never easy but I'm taking it one day at a time.

Well, I feel vindicated after today!!!! Way back when I began iron infusions for my anemia (which at the time I had no idea I had hyperparathyroid disease, I only knew I was anemic from my malnutrition/malabsorption problems) I was told that after the four infusions I would feel like a new woman. Well, I did, but not a good kind of new woman, like a new woman who felt like she was about to die! After the first infusion was when my phosphorus began to drop. Each week it got lower and lower. I called the Hematologist and talked to a nurse and told her I knew my phosphorus level was dropping from the iron infusions but she assured me that couldn't happen. I knew it could, I read about it and online and knew that was the problem but she never told the doctor I had called so today I went in to see her loaded with all my evidence! My husband had kept a calendar of every doctor, every procedure, everything I had done for months trying to find out what was wrong with me and he was the one who discovered I had hyperparathyroid disease! He kept looking until he found the answers. When I showed all that to Dr. Misischia, she was shocked and told me we were exactly correct, the iron did cause the phosphorus to drop. I had indeed had an allergic reaction to the iron because of my hyperparathyroidism. I told her I had called her office and talked to a nurse who assured me that the iron could not have caused it.  Of course to be honest at that point nobody knew that I did indeed have hyperparathyroidism but still, that wasn't the issue at that point either, the point was I was getting sicker and sicker from iron infusions that were supposed to make me feel fantastic! She was so apologetic and took lots of notes and got my new Gastro doctors information and such because she said she learned something herself today and she wanted to communicate with Dr. Sanadhi about it and find out more so she would be better aware and train her staff better to know things like that. She said she was going to have a meeting with all her nurses and tell them what happened and that if any patient ever called and told them something like that about getting sicker and sicker every time they had an infusion of iron that they were to come to her from now on and consult with her. So today I felt vindicated  yet again!!!! Just like when I finally found out what was wrong with me a few weeks ago after being told there was nothing wrong with me over and over. So I want you all to know that if you have something like this happen, especially  if you believe you have hyperparathyroidism please, don't stop, keep pushing for answers. Sometimes you just plain have to become unpopular with some doctors staff because they refuse to let you talk to them or even consult with the doctor when you tell them something like this. I hope that this blog is helping some of you know how to get faster and better help for problems like this. It's a hard disease to diagnosis a hard disease to even make people understand, most don't and won't ever  but just know this. The key is getting the awareness out there to as many people as you can that you know that's had gastric bypass in particular that if they have these symptoms like mine, suspect hyperparathyroidism, go to a doctor and ask for a PTH test. If it comes back high, run, don't walk to another doctor if they tell you it's high but that's okay, we'll just watch it. It's not okay!!!!! Find a doctor who understands it's not okay to have a high PTH if you've ever had gastric bypass!!! I wish I had a way to help connect people with doctors that do care and understand it but so far I haven't gotten that one figured out but I am still looking for a way to do it. Thanks for reading my blogs and please forward this information  to anybody you know who might benefit from it! Thanks!

Great day at church today! The many faces of Hyperparathyroidism, you take it as it comes!!!

Well, as you all know from reading my last blog this past week wasn't a good week for me. I got real sick again, got very scared that maybe I had bragged a little too much a little to soon. I almost hit the panic button again saying oh no, here is I go again. When you've been as sick as I've been for as long as I've been & then suddenly you just start to feel so much better so quickly then suddenly you wake up thinking you are right back where you started you do panic. You forget that maybe you just caught a bug somewhere like normal people do, you automatically blame the hyperparathyroidism. It could have been either, still don't know, all I know is Friday I woke up feeling much, much better again. I know if you are suffering from this disease you understand what I'm talking about. But today was a great day for me. I got up, dressed & went to Sunday School & church plus went out to eat after church. WOW! I felt normal & so happy. I am telling you this to tell you that there will still be challenging days with hyperparathyroidism disease. There is no for sure cure, but a very good treatment & I'm pretty sure that my blood work will have to be watched closely all the time from now on to prevent anything from getting very low real fast. This is a learning process for me. I do know that I will never again take even the smallest things for granted again. The ability to get up & just walk without a cane or walker is amazing to me. I just pray that if you are reading any of my blog because you or somebody you know is going through what I've gone through that somehow I can help you not have to suffer & get as close to dying that I have. I will let you all know how this week goes. Only one doctor's visit this week!☺

My latest "toy". Pump for injecting Calsitrol for Secondary Hyperparathyroidism

Just wanted to show you the pump we use to inject the Calsitrol into my port for my hyperparathyroid treatment. We did have an IV pole to use to put it in but the company we get the infusions from sent the wrong thing this week and we had to use this. It looks like a nail gun, lol, so my husband now has a new toy! I don't care how it gets in me as long as it does. I receive this Calsitrol treatment to correct the over activity  of the parathyroid gland. Just thought you guys would enjoy seeing some of my many adventures with this disease.

I've had a very long, hard week after feeling better for two weeks. Just goes to show you that secondary hyperparathyroid disease never goes away!

Well, after a very good two weeks after my treatment began for my hyperparathyroidism I had a set back. Why????? I have no idea really. When you have this disease and something goes wrong with you as it has me this week you don't know for sure if it's the SHPT (secondary hyperparathyroidism) or did you just catch a bug that's going around. My daughter, Rachel, and I got back from a good week  at the mountains in Pigeon Forge, Tennessee last Sunday and I felt pretty good, unbelievable actually. I even went to church on Sunday night after driving in that day from Pigeon Forge. I thought things were just going to be a bed of roses now. WRONG! I woke up not feeling good at all on Monday but not sure why. I was very nauseated had really bad diarrhea and just was weak all over. I had a doctor's appointment on Tuesday with my PC doctor in Enterprise and I went by myself (for the first time in a very long time!) and I did okay, just not great. I felt so weak and sluggish. I actually had two doctors appointments on Tuesday, one to see my surgeon that put in my Groshong  port because the stitches had come out and had to be redone. Then I had to see my PC doctor later that day for the UTI problem. I found a place to park my car and just went to sleep I was so tired. I made it though. Then Wednesday I had another doctor's appointment in Dothan, Al. which is a 75 mile drive from where I live and I went to that one alone too. My sweet husband has missed so much work because of me, having to take me to doctors because I was too sick to drive myself, so I wanted to do this alone so he wouldn't have to take off. I had to go to my Hematologist just to get blood drawn that day because I see her next Wednesday to find out how my anemia is going. After I got home that day I just ended up in bed because I've been so weak and so sick ever since. I haven't even gotten up until today. I called my new Gastroenterologist this morning to ask him to call me in something for the chronic diarrhea & I'm 'waiting now for him to do that. I didn't talk to him, talked to his nurse practitioner who   knows very little about me or my case and she told me to keep taking over the counter medicine for the diarrhea and I told her that I know there has to be something better to take than that so she was going to "text" the doctor (not sure why unless he isn't working today) and ask him if he would call in something. So far I haven't heard from either of them. I wonder how they would feel if they had chronic diarrhea for a week??????  It's so hard not to get discouraged with this disease because there are so many ups and downs to it. I was taking three things through my port at the same time for two weeks so that alone is a whole lot. I had an antibiotic I was getting every eight hours through the port, the calsitrol I get Monday, Wednesday and Friday through my port and then my TPN every day through my port. That is a whole lot of stuff to go through your body at  one time in my opinion so who knows what causes what to happen in your  body. I think because I did so good in the beginning I got the feeling that I was home free and would not have bad days again so I suppose I learned from this that there will be good days and bad days and I have to learn to live with whatever life throws at me now while I'm trying to get well. Then I wonder, WHEN will I declare I am well????? Not sure if that ever will happen. I believe it will be an ongoing process for a long time, maybe forever. One good thing out of all this though. My phosphorus has finally, finally gotten back up to normal  after four months of it nearly killing me. So now my phosphorus in my TPN is being cut back because it's at the normal range again. I wonder though will I have to keep my Groshong port forever????? It's the best and easiest way to treat all my problems. I can live with it though if I do. I've learned to bathe and wash my hair now without worrying about getting water in it. You have to worry about anything getting into it because a germ could get in and go straight to your heart, where the port goes to, and you wouldn't live very long so you have to be very careful with it. So, I haven't been on social media or on here all week because I have just been too sick again and wasn't sure what to say actually. I know everybody thinks because I know what I have now and I'm getting treatment for it that I am "well" and shouldn't have problems anymore but as this week has proven, that isn't the case so I just am not sure how to handle that really. I don't want people to think it's all a piece of cake now, it's not. I just now have hope!!!!!!!

LIFE IS GOOD AGAIN!!!!!! Each day I get better and better as I am now having my secondary hyperparathyroidism treated!!!!

 This is a post that I posted a few minutes ago on my Facebook page. I had quit posting on my FB about my health but this time I just felt like what I had to say needed to be said there also because many don't read my blog and i wanted them to know how much I have improved in just two short weeks!!!!!!!                                Just wanted to tell you all that Rachel and I got home just in time to make it to church and that was amazing for me. I had been up since 1:30 a.m. and rode all the way home and still went to church. As I've told you all my journey has been very long and very hard and I never believed I would even be able to ride up there must less be strong enough to stay out of bed the whole week. I give God all the glory for the beginning of my healing. I wish I could tell you all I never lost my faith in the three years I was so sick and going from doctor to doctor, hospital to hospital, but I did lose my faith. Satan has made me start to believe that I just wasn't worthy of God healing me so I had just really given up. You can ask Hamp. I had been so bad the last four months that I was unable to even get out of bed to do anything other than a couple of things I struggled to do for Rachel and that was at a huge cost to me physically. I had began to believe that I would eventually die from whatever was wrong with me and I'm serious about that. Once I found the new Gastroenterologist and he told me there is a cure and it's an easy fix I then began to tell God how sorry I was for losing my faith. I began to get the Calsitrol in my port that very next day after I saw Dr. Vic and it began to work almost instantly because it is helping the parathyroid glands to work normally again which is making my whole body be able to begin to heal. Still I was dealing with the nasty UTI which had E coli in it and that was causing me so much pain in my pelvic area I was unable to even lay down and be still so on Monday before Rachel and I left on Wednesday I saw my primary care doctor and he began antibiotic through my port and gave me much stronger pain medication to help me deal with the pain from the UTI until it is cured. So with all that going on I did become a miracle. I rode up there getting my Calsitrol through my port as we rode, Rachel driving. I could feel strength entering my body each day. I became stronger and stronger every day. I am not well yet, but I am getting there more quickly than I could ever believe. I have an appointment with a Urologist April 25 and that is something I really need to do because the hyperparathyroidism can cause you do lose your kidney's had it not be diagnosed and treatment began to fix it and keep all the things in my body the way it should have been. I had quit posting on FB about my health because I felt, even was gently hinted at, that nobody cared to read all my problems with my health so I began my blog so that those who don't care, don't want to read about my health problems and those that do can go there and read it. Today I felt I needed to try to explain how and why I was able to do what I just did this past week. I get criticized if people see me out doing anything saying, you can't be too sick if you can do that, but honestly for me I just feel like those that think or say that don't know the whole story of what I've gone through or just don't care, either way, it's my story, and if I want to tell you I will, if you don't want to read it, that's your right also. I will still be blogging as my journey continues because I have already been contacted by people as far away as Bolder Colorado that have been helped by my story, by finding out there is an answer to their health issues too even though many of them have also been told they are only imagining their health problems and it makes them feel so good to find out it's real, it's a disease just as other diseases. In fact hyperparathroid disease is known as the silent killer because usually people die and nobody knows why because this disease can cause many other things like heart problems, kidney problems, liver problems, etc. God just blessed me mightily by sending me to the right doctor who knows it a real disease and how to treat it. It's not curable but it is treatable and I can live a productive life now as long as I do what I am supposed to do and follow my eating plan and keep a very close watch on all my blood work that needs to be watched like Vitamin D, Vitamin B complex, phosphorus, and calcium. People with gastric bypass will have this disease whether they know it or believe it or not. It takes years to get to a point it causes you the problems it has caused me and even then they may never find the right doctor that knows what it is & how to treat it. I have no idea how much longer God will allow me to live or how I will eventually die but I know now that it won't be from secondary hyperparathyroidism!!!!! Praise the Lord and I'm so sorry this is so long but I wanted all this to be said and from now on check my bloghttp://foundmyillness.blogspot.com/ to see how things go as I carry on trying to make this disease better known about and help others to get help. If you read all this, bless you, lol. You are a true friend I know and someone who cares about me and has loved and prayed for me.