Bob's Bday
Hi Yall,
Bob had his Bday on Halloween, and we told people they could stop by yesterday afternoon or evening or next Sat afternoon or evening. He really deserves two days this year. He has enjoyed the devils food cake I made and ice cream and some family and guests who stopped by yesterday. He loves to sit outside and give the trick or treaters candy when they stop by too.
He loved all the notes family and friends sent him by email and wrote on my wall on facebook to give to him. He got cards from near and far as well.
He put out the pumpkin lights that line our driveway and walkway and the giant snopy halloween that is full of air and light as long as it is pluged in. Was nice.
He has been having a couple of those days he has where he has weakness and has to push himself to do a bit at a time, and with that increased sustained effort he gets more energy and feels better.
I think it started after his sandostatin shot last Thurs. I am hoping it is not the new h1n1 flu that somehow got us, as he was feeling a bit dizzy too, and I was one day, but I don't think that is it. He gets this way now and again, and I cannot connect it exactly to anything, but more often after his infusion or his sandostatin shots.
It usually passes in a day or two if he keeps moving and does not give into it. I have to check with his GP bc she always says he has a slight irregular heart, and I thought it was like mine, beating irregularly, but I looked at his old clearance for surgery notes, and it says something like 1st AV block. I have to find out more about what that is. His doc never makes any big issue of it and always clears him for surgery, but I want to see if the shots or the infusions can make it worse.
Not sure what could be done as he needs the remicaide for the crohns and his eyes, and the sandostain for one of the 5 treatments for his severe macular edema in that left eye.
HIs internal med doc takes a very low intervention approach to Bob and he does better most of the time with that, as sometimes more interventions seem to make things worse. He is due for another colonoscopy too, but right now, as winter is coming on, and his symptoms of the crohns are really continually in remission, I hate to see him have any interventions he does not have to have. Think I will see if he can have an office visit and see if they will let him put off anything invasive.
The birthday cards and visits and emails have kept him busy and we walked to the end of the block and back today as it got up to 71 here.
Well, add me to the list of people wishing Bob a (belated) happy birthday. I'm glad to hear he (and you) enjoyed a nice day.
Bob has done such an amazing job of coping with his multiple health problems - and you have done such an amazing job of getting him care. You are both such special people, and such an inspiration to all of us here.
Wishing Bob many more happy, healthy Halloween birthdays!
Re: Hippo Birdie to Bob!
Betti,
Call Bob's doctor and tell him that he is getting dizzy and has no energy. with his heart problem it might be related and is nothing to fool around with trying to figure out if it is some drug causing the problem. that is the doctor's job.
I'm very concerned as vascular disease is a complication to the crohn's disease that Bob has. does he also have anticardiolipin antibodies or amyloidosis related to the crohn's disease?
please wish him a very HAPPY BIRTHDAY from me as well.
Thank you for thinking about Bob and caring. I will forward the info to him too.
I have not gotten weak and went to bed as soon as I got home and warmed supper tonight. Just feel awful but no fever yet. I have only had flu once in the last 20 years bc I missed flu shot once, and had to go to bed under tons of covers with chills for two days. If that hits me again, I will have to get a cab to get me and bob to the docs.
I am hoping it may be better tomorrow so I can drive us to get a checkup. Bob said he felt better today. Not sure what is going on really.
I wanted to fax the info I shared here last night to his internal med doc today, but got to feeling so bad myself I had to come home.
I will get us there tomorrow if we are still feeling like this and call his doc either way.
I can always hope it is a 24 hour thing he had and mine will go away as soon.
Re: hi mike
Betti,
if it's the flu, starting tamiflu might be advised for both of you. Bob's meds might need to be adjusted during this time so please make that call to the doctor(s) for the both of you.
I' m so happy to hear that Bob had a great time on his birthday. God knows if he deserves it! I hope he will recover very soon from dizziness. And, good luck for the colonoscopy, I know it' s a quite invasive and unpleasent procedure. Is that really necessary?. I hope dctors could find another way to do what they have in mind to do.
we are both feeling a lot better. I think for Bob it was the shot of sandostatin that often makes him feel down a day or so after and then whatever I also got for about 48 hours. Maybe the regular flu or something with our shot helping so some other kind of bug.
BOb gets weak and feels awful at least 24 hours after the remicaide infusion, and sometimes after that shot. I am going to work with his gen doc to see what helps keep it from prolonging though. I know she wants him to walk bc of the DVT in his leg, and also bc of his health in general. We both tend to not walk much if it starts to get chilly, so I am going to see what we can do about going to the mall or stores and walking inside. Bob does not want to go work out at a gym.
I am getting info from her on anything that might affect his heart issues too. I am going to see if he can also put off going thru the colonoscopy since he has all symptoms of it under control. If it is needed I am going to see if his gastro doc will meet with him instead of the colonoscpy and see if the agrees Bob may be able to put it off while. Stressors are not good for him when they can be avoided.
He goes to Boston to see Dr.Foster on the 19th of Nov, so I am hoping he keeps feeling more like himself as he has the last couple of days and we can put off anything except that shot if it turns up here where we are on waiting lists.
So he is well,and I am baking another birthday cake for him tomorrow morning. Some of his friends will stop by to visit with him and have some cake and snacks.
Just wanted to update you all. We really both try to rest and live during the times things are stable enough that Bob feels like doing things in the yard and house and some of the regular ole daily things we used to take for granted, but that are now real times of blessings.
Will catch you all up on things again soon, especially after he sees Dr.Foster. He sees his eye doc here to just have general look at gluacoma and the condition of the new cornea etc next week.
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