kvolland
Forum Replies Created
-
Posts
-
Not a problem Marion. I really truly believe that use of Home Health (skilled care not custodial Home Care) is a VERY under utilized benefit in our country for sure. I have been in Home Health and at times Hospice for over 15 years and too many times we don’t get called in until there is little we can do or everyone is so overwhelmed and in crisis. People need to know to ask for it. And anyone of Medicare age or has Medicare for disability are eligible for it whether they maintain straight Medicare or pick up an HMO/Advantage plan. Most private insurance will cover both.
Sorry, it can kind of be my soap box.
KrisV
Thanks for posting Gavin. Mark hits a couple of the high risk markers so it makes me doubly glad we decided to go ahead with it.
KrisV
January –
Even my husband who seems unflappable at times just admitted some scananxiety to me the other night. We have one the 31st to see if he will continue chemo, do radiation or just monitor. I already knew I had it. I find some relaxation exercises help me to get some sleep before.Keeping my fingers crossed for a great scan. And congrats on one year.
KrisV
Wonderful news Mary! I wonder if I could stow away in your suitcase….It’s not so cold here in the NW but the rain is awful right now. Have a great time on vacation.
KrisV
Dianna –
Welcome the roller coaster ride of cc. The nice thing about joining us here is the wonderful support that you will get. As a nurse I have always advocated support groups for anyone going through any kind of healthcare crisis and this is a great group to get support from. No matter your question some one has been there before you and has wisdom to share.
I would back up everything that has been said. I will add however that if your husband is eligible for Medicare then he has a hospice benefit that would do as has been previously mentioned…..even if you have a Medicare HMO or Medicare Advantage plan, Medicare will resume payment if you opt for hospice. The other thing that you are eligible for is Home Health support again even with Medicare HMO or Advantage plan, they offer some sort of Home Health. This is skilled care at home – things such as a nurse coming in once or twice a week to help with symptom management and may other things, therapies in the home, a bath aide to assist with bathing and a social worker to assist with things such as placement if needed, obtaining in home care, etc. They will not provide ongoing custodial care such as daily care but can be a GREAT support system. Even being a Home Health nurse myself I wish I had asked for more help when my husband was discharged after his surgery. Just ask you doctor. I am sure you have help close by.
Keep us posted and we will be here for you.KrisV
I had a good laugh at what Kris said. You are so right, rare disease so we get rare reactions. Although our ONC did tell us that allergic reaction to the OX is fairly common when given IV and they are simply amazed that he has gone so long.
No discussion about a port though at this point. I am going to ask about a PICC for the last two even though they don’t seem to like PICC’s for chemo.I hope you all have a Merry Christmas. We have all the kids home for a change so my house has gotten really SMALL but so full of love.
And the youngest went to see his surgeon and he has completely cleared him. The scar is disappearing. The only bad news is that is left vocal chord is paralyzed and may never come back but the right is compensating.
Hugs to all,
KrisVPatti –
Sounds pretty darn good to me. Keeping my fingers for things to just keep getting better.Merry Christmas and Happy New Year!
KrisV
Good one. The only suggestion that I have that might go with it for gifts, is instead of giving them concert tickets or something like that I would suggest doing something for them. Cook a meal, clear their sidewalk of snow, or anything other chores that might be difficult for them to do. Gift certificates for groceries, pharmacy or something like that work too.
I am always reluctant to have someone whose immune system is not so good due to chemo go to places where there are crowds of people. Really increases the risk for infection especially this time of year where colds and flus are rampant.
Of course a gift that they can use when they are done is great too. I had one family that all went in and did a trip to Hawaii for their parents when dad’s chemo was done. That was great for all of them.KrisV
Evan –
I don’t know how much actual research there has been done but I know someone will chime it on that. I honestly believe that it doesn’t really hurt BUT always make sure that you ONC knows exactly what herbal or natural products she is taking as some of them can interact with the chemo and there are some that are a no-no to take with chemo and other medications. So before starting them ask you ONC if they are okay. Also certain herbals can cause things like lowered red blood cells which you don’t need while doing chemo. Just ask.KrisV
LindaR –
I would push the docs more to maybe get a CT scan if they have not then I would also see about a referral to someone who can do an upper scope, where they put a camera down and look at the entire esophagus. Sometimes pressure on the side of the esophagus can cause it to narrow or acid reflux can cause it to narrow too.
Squeaky wheel gets greased. Keep calling, bugging and going in. You may have to push at your primary care doc who should make referrals to have it assessed.KrisV
As long as you are happy that is what is the best. And I do have to say that we really didn’t make any kind of decision until after his surgery when we started looking at oncology. The surgery piece of it we were both so stunned that we couldn’t even think to ask for other opinions. We just went where we were pointed. Got very lucky.
KrisV
Caroline –
Out doc said not to worry about the numbers and the CA 19-9 is the only one we have done on a regular basis. When I asked the doc he said not to dwell on it at all since so many things can affect it. He said the scans were more important than anything.
As hard as it is, I would try to get her to not really think about it. It’s tough.KrisV
Porter –
Glad you were happy up here. It’s too bad it’s such a long drive for you…especially with the weather the way it is. The last time we drove up there it was snowing and terrible conditions. Not supposed to be much better this Friday.
I am not sure why it would be like that. The number should be more consistent. If it went from 17 to 14 then it goes from from 13 to 12. I wonder if is’s different eyes measuring. I know when we are doing wound care sometimes it seems to change based on how you look at it. Hmm, be interesting to hear what he says.
We had the choice to go north to Seattle or south to Portland since we are about halfway. We went with Seattle since the docs we were too see there seemed more experienced.
KrisV
