When you are a patient and a caregiver

[marti]

Same here in wanting updates.

I hope everything went well with the procedures.

Praying again tonight. Xo

Thanks Guys.... Sam was getting better when the Thrush came on. He still has a little trouble eating, but was able to brush off the last of the "hairy tongue" this morning. So that might help his appetite. But... He broke out in a terrible rash all over his body... like hives. Of course this happened over the weekend so we couldn't get to see a doctor. Called them and were told to stop the Xifaxan and the Nystatin for a few days to see what happens. I think the rash is better but now we have to decide if and when to resume the Xifaxan. He really needs this med for his encephalopathy. Hoping he is not allergic to it. He's been on it for a month and it's very rare for this to happen as a result of taking it. So maybe it was a combo of things. He's pretty depressed again. This has been going on since Sept 10th now. Also back to loose stools. So that scares me! Hope you are ok.

[msgijo]

Hi all. Sorry so long between posts, but life has been kinda hectic. I want to thank everyone for their prayers.

Marti - you have been dealing with this a month longer than I have. No wonder Sam is depressed again. I just hope that you are trying to take care of yourself! I know that I am trying - but to be honest this is a weight-loss program that I wouldn't reccomend to anyone. I do still have 1 canceled appointment to reschedule, but have gotten back to a semblance of routine for the most part.
I understand about the meds problem - we have had to adjust my husband's meds also. And I have had to adjust some of mine during this period also (diabetic - blood sugar + stress don't play well together and meds do not help the situation).
I am praying that Sam is over the worse of this and is on the mend, that he will be back to normal for a Christmas gift to you .

DH went back for the 2nd part of 'glueing' on 11-9 and was home on 11-10. BUT his blood sugar spiked so high after they started the procedure that the doctors were afraid he may have a stroke / heart attack that they backed out without doing anything. Needless to say that since he didn't really want to go back for this anyway he was not happy about how it turned out .

I talked to the doctor while he was being taken back to his room and decided that we would NOT attempt this procedure again, but will go straight on into gamma knife treatment. He has since then had a CT scan and we are now waiting on the doctor that will perform the 'gamma knife operation' to call for an appointment.

He is doing doing okay I guess - it is SO unpredictable. Sometimes he feels good, sometimes not. The seizures are still a problem (and very concerning to me). Since I have had MS for 25 years I know enough about the brain for this to really scare me. I am trying so hard to not stay on top of him - he wants to be 'normal' and so I try to let him do as much as he can while still trying to make sure that he isn't harming himself. One ?good? thing has come out of this. Since his brain has been affected he is now having some of the same sx's that I have had for years with MS, and so now he can understand some of the things I have tried to explain to him. He doesn't like them , but now has a better appreciation of what I go through daily.

So many doctor appointments and so many tests that it is not only confusing but exhausting also. And now we have the holidays to contend with also . This week he only has one Dr appointment so other than Thanksgiving this is going to be a downtime week for us - it starts up again next week full force.

But I am thankful for all of the prayers coming our way. He hasn't had another hemorrhage and I haven't had a relapse in the mist of all of this.

[marti]

Hi all. Sorry so long between posts, but life has been kinda hectic. I want to thank everyone for their prayers.

Marti - you have been dealing with this a month longer than I have. No wonder Sam is depressed again. I just hope that you are trying to take care of yourself! I know that I am trying - but to be honest this is a weight-loss program that I wouldn't reccomend to anyone. I do still have 1 canceled appointment to reschedule, but have gotten back to a semblance of routine for the most part.
I understand about the meds problem - we have had to adjust my husband's meds also. And I have had to adjust some of mine during this period also (diabetic - blood sugar + stress don't play well together and meds do not help the situation).
I am praying that Sam is over the worse of this and is on the mend, that he will be back to normal for a Christmas gift to you .

DH went back for the 2nd part of 'glueing' on 11-9 and was home on 11-10. BUT his blood sugar spiked so high after they started the procedure that the doctors were afraid he may have a stroke / heart attack that they backed out without doing anything. Needless to say that since he didn't really want to go back for this anyway he was not happy about how it turned out .

I talked to the doctor while he was being taken back to his room and decided that we would NOT attempt this procedure again, but will go straight on into gamma knife treatment. He has since then had a CT scan and we are now waiting on the doctor that will perform the 'gamma knife operation' to call for an appointment.

He is doing doing okay I guess - it is SO unpredictable. Sometimes he feels good, sometimes not. The seizures are still a problem (and very concerning to me). Since I have had MS for 25 years I know enough about the brain for this to really scare me. I am trying so hard to not stay on top of him - he wants to be 'normal' and so I try to let him do as much as he can while still trying to make sure that he isn't harming himself. One ?good? thing has come out of this. Since his brain has been affected he is now having some of the same sx's that I have had for years with MS, and so now he can understand some of the things I have tried to explain to him. He doesn't like them , but now has a better appreciation of what I go through daily.

So many doctor appointments and so many tests that it is not only confusing but exhausting also. And now we have the holidays to contend with also . This week he only has one Dr appointment so other than Thanksgiving this is going to be a downtime week for us - it starts up again next week full force.

But I am thankful for all of the prayers coming our way. He hasn't had another hemorrhage and I haven't had a relapse in the mist of all of this.

Darlin' I will write you a more detailed message soon. For now I was wondering how old your husband is? I'm still behind on appointments and using VooDoo medicine to cope with pain etc right now. I will get back to you soon. Do what you have to do. Seems like we both ( you and me ) lost a couple months here.

[jamilea]

Thanks Guys.... Sam was getting better when the Thrush came on. He still has a little trouble eating, but was able to brush off the last of the "hairy tongue" this morning. So that might help his appetite. But... He broke out in a terrible rash all over his body... like hives. Of course this happened over the weekend so we couldn't get to see a doctor. Called them and were told to stop the Xifaxan and the Nystatin for a few days to see what happens. I think the rash is better but now we have to decide if and when to resume the Xifaxan. He really needs this med for his encephalopathy. Hoping he is not allergic to it. He's been on it for a month and it's very rare for this to happen as a result of taking it. So maybe it was a combo of things. He's pretty depressed again. This has been going on since Sept 10th now. Also back to loose stools. So that scares me! Hope you are ok.

I am. I've been feeling much better since a few weeks ago.

The two of you have certainly had an eventful year. Loose stools should not be an issue as long as it doesn't smell like the scent of Cdiff, which if you have smelled it, it is an unmistakeable scent. It's very distinct.

You guys sound like you need a good regime of comfort food, Netflix binge watching, and cuddling. I'm so sorry it has been so rough. Thanks for the updates xo

[msgijo]

Marti - he is 57.

It sounded really good when I kinda made light of missed dr appointments (for me) but some of them are really not urgent and so I am not planning on stressing about re-scheduling. Dentist for cleaning (yeah periodontal disease but still ..) and the 2nd opinion Neuro (I saw the new one earlier this month so ...). I DID see the diabetic doctor late last month and not to see him again until after the first of the year.

Like you said - we do what we have to do.

I will put my email in my profile.

[jamilea]

Thanks MsGijo for the updates. You guys are in my thoughts and prayers <3