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Old 03-11-2007, 02:40 PM   #1
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I feel so alone.

I just found this board yesterday. My husband has been diagnosed with something called Q-Fever. I have posted to HealthBoards.com Message Boards > Health Issues > Infectious Diseases > Q Fever? as well to find other people with this illness as only maybe 100 a year in the US are diagnosed with it. I have posted 2 long posts regarding his condition #100 & #101. The short version is since the begining of Aug. he has been hospitalized 4 times with the last time the first part of Jan. Until mid Oct we didn't even know what we were dealing with, except that he had a constant fever that would go up over 102 as soon as the advil wore off, terrible chills, night sweats, drenching sweats when the fever breaks, anemia, weakness, loss of appetite, mood swings, constantly cold. He has had 12 units of blood since Nov. and 10 of those since the first of Jan. He was in the hospital in Jan. for 3 weeks; 2 of which were in ICU. They finally got the fever under control. He came home around the 26th of Jan. On a walker due to muscle loss, he will be 50 this month. This time last year, he along with 3 other people in his department would change the tires and wheels on 30 - 40 vehicles a day. He worked the other guys in the ground and they are in their 20's. Due to a urinary blockage, probably from the q-fever, it attacks every system in the body, he has a suprapubic catheter. When originally inserted the first part of Dec, he was suppose to block it off and when he needed to urinate try to go and then use it to empty his bladder. Can't fix this until the fevers are gone and he is stronger. Well it has ended up that he totes a catheter bag everywhere. He has a leg bag but hates or doesn't have the energy physically or mentally to do it. I could go on and on with his issues but did that else where. Right now I hate myself because I am so angry and resentful. I have become his mother - begging and badgering to get him to do things and where we thought things were getting better after this last hospitalization they are going down hill again. The fever is back going up to 105. We started on Thurs. outpatient IV antibiotics twice a day at the local hospital. He also had to have more blood on Fri and discovered last night it wasn't enough so got 2 more last night. I have a special needs son who is now 18. He was in and out of hospitals when he was small. I have dealt with his issues, I took one of my stepdaughters in when she was 14 and helped raise her along with my 3 children. She made my life hell and then after marrying and having a son split from her husband and moved back home. I helped raise my grandson for 4 years until alittle over a year ago when they moved to the other side of the country. Just when I thought I was going to no longer have to give everything my husband becomes ill. We had just started making some friends and going and doing things with them. I have now given up almost all of that. I am just tired and lonely. It seems I am the one that has to reach out to my friends. I am tired of doing all the reaching. I am tired of doing all the understanding. I am tired of doing all the giving. I know my husband is the one ill and it kills me. I feel like I am watching him die slowly before my eyes. The doctors don't know exactly what to do. I just wish my friends and family would call me, would come by when they say they are. Sorry for the vent. There is know one I can vent to that won't get their feelings hurt and I have too empathetic a nature to deal with that. I have been dealing with my own depression for over 5 years. Yes should go to my dr and have the meds changed but that costs money. Sorry for the length. - Sharon

 
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Old 03-11-2007, 03:21 PM   #2
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Re: I feel so alone.

Q-Fever is a serious disease when it goes on more than 6 months. His symptoms are that of Q-Fever but I do not believe loss of blood is one of the symptoms. Has he been checked for leukeima? If he is not hemorraghing some place then he is most likely not manufacturing blood. Have they done a bone marrow test?

Yes, you have been down a hard road and many of us do understand. Being a caregiver is not easy but we can deal with it especially if we have God to walk with us every step of the way.

 
Old 03-11-2007, 06:24 PM   #3
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Re: I feel so alone.

Thank you for your reply. Yes, he has had bone marrow tests. And anemia can be a problem with Q-Fever. He is not manufacturing enough of his own blood because of the Q-Fever. He has had numerous blood tests, blood cultures, MRI's, Ct Scans, Biopsy of his enlarged lymph nodes, x-rays, nuculear tests, spinal tap, endocrine tests, echo of his heart (2 different kinds external & internal) and I probably forgot something. He had been tested for more than one kind of HIV and cancers. The ONLY thing that comes back positive is high antibodies for Q-Fever. This week for the first time his thyroid test is coming back lower, so will see what that means. He had had this same thyroid test a couple of times since Aug. and it has always been fine. Origanally that is what we thought might be the problem, because his sister and a grandmother have Graves Disease. But every doctor kept saying no. Please anyone feel free with any suggestions and I will say whether it has been tried. I just know that right now he is back almost where he was when he went in the hospital on Jan. 7th. The biggest problem right this minute that I can't fix is that he won't eat. Back to maybe 300-400 calories a day this last week. I won't let it go as bad as last time. He is to see his ID Doctor on Tues. AM., so we will see. Again thanks for listening.

 
Old 03-11-2007, 07:03 PM   #4
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Post Re: I feel so alone.

Did he do an MRI of thy hypothalamus? It controls the bodies temperature,and can control every endocrine glands, alter blood pressure, metabolism, and adrenaline levels. I hope they find whats going on, sorry you are going through so much. I will keep you and your family in my thoughts and prayers. And keep us updated as you can.

 
Old 03-11-2007, 07:11 PM   #5
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Re: I feel so alone.

At this time I think they have done MRI's of most of his body. His adrenal glands are not working properly at this time and the doctors are blaming it on the Q-Fever. He is currently on prednisone for this. It is like they straighten out one system and it moves to another or one medicine starts working and the disease changes tactics. Thank you for your concern and thoughts.

Sharon

 
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