Still sad, depressed and worried sick
Well, I know it has been a long time since I have written in my journal. I have just been here at home watching my husband deteriorate and praying for a miracle. Just to know what is going on with his body would be such a blessing. I mean I know he has a lot of diseases and the prognosis does not look good, but every week he goes to the doctor and they try something new. Last week they gave him Avelox, an antibiotic, because he has chills and low grade fever 4 to 5 days a week. He had one good day and has been worse than ever this whole weekend. He cries a lot because he is in so much pain in his legs and whole body and he cries because he doesn't want to die and leave me. He tells me he loves me about every 15 minutes and will stay up just to be with me, so now I just go in and lie with him while he goes to sleep. I have decided to call Mayo Clinic in the morning to see if they will see him. They have specialists for his Pulmonary Hypertention. The problem is we live 400 miles away and hotels are very expensive in Phoenix, so if they don't have accomodations there I will just sleep in his room or in my car for a few days. I just don't know what else to do. The doctors here in Kingman just have not been able to help him. The heart doc says his heart is okay, the lung doc says he is only in the moderate stage of PAH, and the kidney doc says he has 45% kidney function. They all seem to think he should still be okay, yet he has not had a decent day since the last hospital visit in December. The worst part is his brain seems to be fine (except for the depression) but he still worries about all of the things that need to be done around the house and is so used to doing everything himself. He won't take help from anybody but I told him yesterday he is going to have to learn to take help from people, he just can't do everything himself. I just think if he could get rid of the infection in his body or find out what is causing the chills and fever, maybe they could give him something to stop it and make him feel better.
Replies
Gosh, you two are going through so much. If you do find a place to go for answers, ask if the hospital has a place they rent out at a discount if you can afford it, or free if you can\'t. I stayed at one when my sister was dying from stomach cancer when I donated bone marrow to her. It is run by the hospital for families of patients.
In my husbands case, I use my license to get the hopsital to bring another bed in for me, so that I could stay with him when we lived so far from a Kaiser. It is hard for our husbands to release the work load, they need to feel useful. It really sounds like he needs another hospital stay to get a complete workup to rule out the different infections that may be hurting him. I will be praying for you. Hugs, Connie
Thanks Connie, I really appreciate your concern and insight. I have a question for you. Could excruciating pain cause the symptoms of the fever and chills. The strangest thing happened yesterday.He was prescribed morphine, oxycodone and a pain med gabapentin, but because they made him so constipated he did not take them. Well I bought him some prune juice finally and he went to the bathroom pretty well so I decided he should just dope up and get rid of the pain. He did that and within about four hours the pain was gone and he did not have the chills (we are talking freezing cold) and the fever went down. What do you think with you nursing background could the pain cause all of that? I would really appreciate your thoughts personally or professionally, I really don\'t care which. I even thought maybe it was withdrawals from cutting back on the morphine (he was still pretty much taking the oxy) but he swears he had not been taking the morphine in days because of the constipation. Thanks again for your concern. Patty
YES, PAIN CAN DEFINATELY SEND OUR SYSTEMS INTO OVERLOAD AND CAUSE A VARIETY OF PROBLEMS. I STILL BELIEVE THOUGH THAT HE DOES HAVE SOME KIND OF BACTERAL INFECTION. SEVERE PAIN ALSO ELEVATE THE BLOOD PRESSURE WHICH IS NOT GOOD IF HE HAS ALREADY HAD ONE STROKE. WITHDRAW CAN CAUSE THOSE SYMPTOMS ALSO, THAT HAS TO BE TITRATED DOWN SLOWLY TO AVOID MORE PAIN, FEVER AND CHILLS. IT IS DANGEROUS TO STOP ANY MEDICATION THAT HAS ADDICTIVE QUALITIES. AS FAR AS THE CONSTIPATION GOES, I WOULD START HIM ON A TWICE DAILY DOSE OF STOOL SOFTNERS AND HAVE HIM DRINK 64 OZ. OF WATER OR BETTER EACH DAY. ALSO THE PATIENTS I WORKED WITH WERE GIVEN MIRALAX WHEN ON PAIN KILLERS AND THAT IF DONE REGULARLY, WORKS VERY WELL. MOST PATIENTS STOP THE MEDS ONCE THE BECOME CONSTIPATED AND THEN CHASE PAIN ALL WEEK UNTIL THEY GIVE UP AND START TAKING THEM AGAIN. A BALANCE CAN BE REACHED BETWEEN TAKING PAIN MEDS AND NOT BEING CONSTIPATED. IT IS BEST TO STRIVE FOR THIS AS IT SOUNDS LIKE HE TRULY NEEDS THE PAIN RELIEF PERIOD. ALSO HEATING THE PRUNE JUICE AND GIVING IT DAILY CAN HELP BUT EVENTUALLY HE WILL NEED THE ABOVE ALSO.
I SURE DO HOPE THIS HELPS. MOST OF THE ITEMS ARE JUST OVER THE COUNTER AND NOT TOO EXPENSIVE. KEEP IN TOUCH AND DON\'T FORGET TO TAKE CARE OF YOURSELF ALSO. HUGS, CONNIE
Thanks, Connie.We had already done the stool softeners, fiber and miralax. The prune juice definitely did the trick. He has had two good days, even was able to go to lunch yesterday and to grocery store today. It could be the antibiotic just needed time to work. I guess we will just have to wait and see how long he goes without the fever and chills. Thanks for your input. Patty
Anytime friend! I am glad he is feeling better. Hugs, Connie