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Southernbelle
12-27-2006, 12:37 PM
:( I am asking for you to keep my husband and myself in your thoughts and prayers. Larry has acute pancreatitis, sjogrens, hashimoto's thyroid and sle lupus. We have had a hug problem finding a rheumatologist who can remember who he is and why he is there.What is wrong with these doctors who seem so uncaring????? Finally just yesterday we were referred to a new rheumatologist who is supposed to be the best in the state of Arkansas. I have some re-newed hope there. Through tests, it was discovered that Larry has a huge cyst on his pancreas and his pancreas duct is blocked. He has had alot of stomach pain and is very bloated. He is afraid to eat because it seems to make it worse. Also, we just found out through tests again, that he has blockage in his carteroid artery and substancial blockage near his heart. I am illiterate when it comes to knowing medical terms. I do know however, that he is scheduled to go to the University of Arkansas Medical Science Hospital tomorrow for surgery. I am not sure about the extent of the surgery, it all depends on what the docs find. I am scared. He has been so sick since right after my mom died June 23rd of this year. He stays in bed 23/7 and even though he takes all of his prescribed meds, he is no better. A couple of his docs are questioning the lupus diagnosis since the rheumatologist gave his diagnosis on the second visit. I am wondering if he could have something completely different wrong with him after being treated for lupus all of these months. Of course, he does have some lupus symtoms. I just don't know what to think. I am so tired!
Are any of you familiar with heart problems and do you know if blockage can cause extreme fatigue? I would appreciate any replies. I have been on constant pins and needles for months now. I am sure that many, if not all of you know exactly how this feels.
Take care

MARYCAIN
12-27-2006, 01:54 PM
I will certainly be praying for you and your husband - I know this must be a very frightening situation - I will be praying that everything goes well.

Heart disease can cause extreme fatigue and shortness of breath, because when the arteries get clogged or blocked, there is less blood flow to the organs and tissues. The arteries are the blood vessels that carry oxygen-containing blood from the heart to the head and body. The body needs oxygen to function, and when your heart isn't functioning right, the blood may not get enough oxygen in it, or the blood can't get through the blocked arteries to carry the oxygen to the internal organs. The carotid arteries are the big arteries on each side of the neck that carry blood to the front part of the brain. You can feel your carotid arteries by feeling the pulse on your lower neck, on either side of your windpipe. Just like the coronary arteries (the arteries in the heart itself), the carotid arteries can develop atherosclerosis, the build-up of fat and cholesterol deposits, called plaque, on the inside of the arteries. Over time, the build up of these deposits makes the arteries get narrower, letting less blood through. In the carotid arteries, this decrease the blood flow to the brain - in the coronary arteries, it decreases the blood flow to the heart.

There are several procedures that can be done, depending on how severe the blockage is. A severe blockage in several arteries might require open-heart surgery, but if the blockage isn't as bad, then a procedure called angioplasty might be availaable. But the doctors will have to do a lot of tests to find out exactly where the blockages are and decide the best way to treat them. It's really important to make sure the doctors know all the medicines your husband is taking, so if you don't have a list, take the actual medicines with you. Be sure to include any over the counter medicines, vitamins, herbs or supplements - everything Larry is taking. And if your husband has taken steroids (medicines like prednisone, solu-medrol, deltasone, etc.) in the last year, be sure the doctors know about that too.

I will be keeping you and Larry both in my prayers today and tomorrow. Please let us know how it goes!

littlered
12-27-2006, 02:00 PM
I'll be praying as well. Love, Kathy

Southernbelle
12-27-2006, 07:07 PM
[i] I really appreciate your thoughts and prayers. I am a little on edge about this, but it has to be done. My only hope is that he will feel better. I hate seeing him like this, and there is nothing I can do. He is such a great guy and he never complains about anything. I don't know how I got so fortunate to have him in my life.

I do have a complete list of all of his meds and all of the vitamins he takes also. He only took prednisone 2 times. The first time, he took them for a week, and the second time, he took them for only 3 days because they started making him feel worse. Now he will not take them at all.

When tomorrow is over, and after we get home and all settled, I will post and let you know how it is. I don't know how long he will be in the hospital of course because that depends on what all has to be done. I have a sneaking suspicion that this is what may be causing his extreme fatigue and his shortness of breath, and chest pain. I am scared.

Southernbelle
12-29-2006, 02:55 AM
:D My husband had his angiogram today and got to come home. He has only a small amount of bloackage, and the cardiologist said that it was not even close to having to have a stent. So, now we are wondering what is causing the chest pain? His chest exrays were very good and his stress test was normal and his other heart tests were good. Do any of you with lupus have chest pains, and shortness of breath that are just lupus related?

I thank you for your concern. It means alot to me! I just have to get him well enoug to get out of the bed and move around a little bit. It is driving me nuts! Lol. At least it is a short trip!

MARYCAIN
12-30-2006, 10:13 AM
Grace, I am so happy your husband got good news from the cardiologist - that must be a load off your mind. At least it's unlikely that his chest pain is coming from his heart. There are a lot of non-cardiac reasons for chest pain - problems in the lungs, the esophagus, or even the chest wall can all cause chest pain. Lupus can cause inflammation anywhere - a lot of lupus patients have a problem called pleurisy, which can cause chest pain especially when you move or take a deep breath. Or his problems with his pancreas could be causing esophageal problems or abdominal problems that are referred to his chest. So there are several things that could be going on that aren't necessarily lupus-related. Since he's already seen a cardiologist, the next step might be a gastroenterologist to look at his esophagus and see if that might be causing the problems. Sometimes you just have to be persistent with the doctors to get them to really address a problem. If he is having recurring chest pain and shortness of breath, then it really needs to be addressed whether it's cardiac related or not. But at least you can rest a little easier knowing his heart seems to be okay.

Southernbelle
12-30-2006, 10:34 PM
It was a great relief to find out that his heart is in good condition. He has been seeing a gastro doctor, he has had chest xrays, which were good, he has had an MRI, MRCP, CT scan and all looks okay. The only thing that we can think of is that he had a wreck years ago and has some trauma to his chest, and we were thinking that maybe the lupus is "picking" on his old injury. He will start seeing a new rheumatologist, but we can't get in until March 27th. I am so hoping that she will have some ideas and will do more to help him than his old rheumatologist, who was next to nothing. He still has a really good attitude and I don't know if I could if I was feeling the way he is, and not able to do anything. We still don't even know what the doc is going to do about the cyst on his pancreas. It just seems to us that no one will tell us anything. We are going to start being more agressive about this. As many times as we had gone to his old rheumatologist, he never once gave us any numbers, sed rate or anything!! We are hopeful that we will get help soon.

Thank you so much for replying and lending me a shoulder to lean on. These diseases are so awful and I had no idea before Larry got sick that they even existed.

Thanks
[/b]

mnjodette
01-01-2007, 08:30 AM
Sounds like you need a 'Sherlock Holmes' rheumatologist, Grace. Someone willing to look at all of the 'clues.' I will keep you and your husband in my prayers. Keep pressing your doctors and when you ask the tough questions, hold them accountable for good answers! It is so important to go in armed with good questions and your own research. This forum has been a great help to me in formulating my questions for the docs. I recently saw a top notch rheumy at a big university clinic and she said, "Boy, you sure ask good questions!" I have Marycain, Saysusie and many others on this forum to thank for that!

Jody

Southernbelle
01-01-2007, 12:55 PM
Thanks Jody! I am wondering if March 27th will ever get here! He sleeps all day long! Today his stomach is all bloated and he is not wanting to eat. I just don't know what to do for him. So far nothing has really helped him. I will say that he is not as fatigued as he was before he started taking the plaquenil. and that has been since July 27th of 2006. I am angry that the doctors don't really seem to care. I have gotten more information from my regular PC doc about autoimmune diseases than from any of his docs. I am going to try to get him to see my doctor really soon if he will. I am more aggressive than Larry is. He seems to assume that the docs are doing their best, (except for his rheumatologist!) and I don't take anything for granted.
Grace[/b]

MARYCAIN
01-01-2007, 01:24 PM
Grace, is your husband being seen by an endocrinologist? If his thyroid levels are low, that could be one reason he is so tired. And in isome people lupus can cause severe depression, which can also affect a person's sleep and eating habits. So if your husband seems withdrawn or lethargic, depression might be an issue. Lupus affects the brain as well as the body, and it can affect both a person's hormone levels, and the level of neurotransmitters in the brain. So your rheumatologist really needs to make sure that neither of these problems is contributing to his fatigue. Plaquenil takes about six months to reach its full effect, so if his been on it since July, it probably will not do much more to relieve his symptoms. Before your husband sees the new rheumatologist, I would strongly recommend getting copies of his medical records from all his doctors, as well as the hospitals where he was treated. In most states, health care providers are required by law to furnish you with a copy of your records upon request. Once you have the records, look them over carefully for any factual error in the medical history, or anything you don't understand about the his diagnosis or treatment. That way, when he sees the new doctor, you will have a better idea of what questions to ask. And having something positive to do may make the waiting easier. And if there's any terminology you don't understand, post a question on the board, and someone will help you figure it out.

Missy
01-01-2007, 04:05 PM
Another suggestion I would make is to have the lab give you a copy of all test results. I have a spread sheet so that I can keep track of the important "numbers" for myself. I slipped through the cracks getting diagnosed, but I won't ever again! Just an idea to help you both feel more informed and manage this disease.

Also, diagnosis and dealing with a chronic illness can be stressful on a relationship. I know you are doing your best to care for your husband, but don't forget to take care of yourself, too. This is so important and you deserve to get support as well. I hope that coming here to talk is helpful to you and I hope that you realize how great you are for being a supportive spouse. Having Lupus and a caring, supportive husband, I can't tell you how important that is to me managing my health. I applaud you for all you are doing.

Southernbelle
01-01-2007, 09:57 PM
Larry has been having his thyroid levels checked every month and since he has been on synthroid, his levels are normal. I am starting to think that his former rheumatologist didn't diagnose him properly. Since day one, I have had a strange feeling about it because I have read over and over again that it takes a while sometimes to be diagnosed. He went to the rheumatologist for the first time in July and the doctor did the ANA test and some other tests ( don't know what they were ) and then when we went back the next week or so, he told us that Larry had lupus. Neither one of us knew what to ask because we didn't know anything about any autoimmune diseases. The third or fourth time that we went to the doctor, Larry complained about his throat feeling sore and his eyes being so dry and the doctor said, " that's because you have sjogrens." That's the first time we had heard about that. That caught us off guard. We just don't know what to do!! I just feel like there is something else, maybe along with the sjogrens and lupus, going on. We need answers. It is very hard to see Larry this way! I know he is depressed, He is taking cymbalta 60 mg, and I am taking Lexapro 40 mg. We are quite the pair. I appreciate all of the help that you all have given me. Larry's cardiologist is having his medical records sent to him and we will also get a copy. This should be interesting to say the least. I didn't think about getting his lab results. Good idea! I think I already stated in an earlier post that we have not been told one single time what any of his "numbers" are. You probably know how excited I am that he will be seeing a new rheumatologist soon. I pray that she will be able to guide us in the right direction. I go with him to all of his appointments because he can't remember anything the doctor says, assuming the doctor actually has said anything! This has taken its toll on me but I really love Larry so much and I would never dream of not doing all I can do for him. His twin brother told my sister the other day that if it weren't for me, Larry would have never made it this long. I will continue to support him every way that I possibly can. If I could have anything at all in this world that I wanted, it would be for him to feel good. That would make my day. I know I have probably already told you all this, I can't remember didley anymore! But....his main complaints are terrible fatigue, chest pains, his stomach bloating alot, and of course the joint pain. He doesn't eat very much because when he does ear, it makes his stomach bloat worse and then he really hurts. These diseases are monsters. I truly never knew they were so awful. I sympathize with each and every one of you. I can only imagine how bad it is for you. Thank you for helping, and please take care.

Grace

MARYCAIN
01-01-2007, 10:16 PM
Did the doctor explain to you and Larry exactly how he reached the diagnosis of lupus? I'm assuming he had a positive ANA test, but that by itself isn't enough for a diagnosis of lupus. So Larry should have met at least three of the other ACR (American College of Rheumatology) criteria for a diagnosis of lupus. You are probably familiar with the ACR criteria from your other research, but if you aren't, please let us know and someone can steer you to more information.

Southernbelle
01-01-2007, 10:32 PM
No, he didn't explain anything to us and we were in such shock that we did not know what we should ask or anything. After all of this time, I now know that we both should have demanded a little of this doctor's time to tell us the things that we needed to know. The communication was awful. Every time that we went to see him, he would come into the room, shake our hands and talked as he was backing out the door. No visit lasted longer than 10 minutes at the most, excluding the time with the nurse who drew the blood for tests. I know nothing about his sed rate, or any of the others things that it seems you all know about your selves. I honestly think that Larry even knows less than I do. Larry told his PC doctor that he wanted a second opinion a couple of months ago, and she talked him into staying with this quack. I feel alot of aggression coming on! From now on, I am going to demand answers. I am also going to see if I can get Larry an appt. with my PC doctor. I think that would be a great place to start until we see the new rheumatologist.

Grace

Southernbelle
01-01-2007, 10:37 PM
I am assuming that his ANA test was positive, your guess is as good as mine, but I have also read where the ANA can be positive and the person may not have lupus. (?) He also has photosensitivity, and has had arthristis for years. I feel like I am in a nightmare.

I am going to bed. I am worn out!

Grace

Southernbelle
01-12-2007, 04:24 PM
Today my husband, Larry saw a new PC doctor. He finally let me make an appt. for him with my doctor, and now he is so glad. There are going to be more tests and new meds tried and this has made me feel so much better. We will soon get the results for the tests that were taken today, but we already have been told his sed rate, which is 7. In September it was 66. Who knows what it was when this all started out. We will see his new rheumatologist soon and the doctor we saw today told us that she was known as the "lupus guru" in our state!

Grace[/b]