Author Topic: Husband is ill! Now what?  (Read 1038 times)

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 12965
Re: Husband is ill! Now what?
« Reply #15 on: April 14, 2018, 08:59:46 PM »
My husband was in hospice and a prescription is needed from the doctor to be accepted into the program. In MN the criteria is that death is expected within 6 months. Many people are in the program who live beyond this and the doctor has to renew every 6 months. It may be different in other states.

It is a good program as people check in often and help where needed. Just taking care of the medications and ordering them and picking them up if needed is a huge help. However, when my hubby was in part of the contract and agreement was that he would not be going to the doctor anymore. The hospice has a doctor who addresses issues as needed. Having the nurses come often also head problems off and keeps things going smoothly.

My husband and I finally got some rest for some weeks before his symptoms increased and we were both kept busy with pain control. Going to the doctor so much during chronic and end of life illnesses is totally exhausting. We got a change to rest more in our recliners and watch some good documentaries that were spirit lifting and made us feel hopeful. Good luck to both of you. Irish
« Last Edit: April 14, 2018, 09:05:08 PM by irish »

Bucky

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 3574
Re: Husband is ill! Now what?
« Reply #16 on: April 15, 2018, 07:01:12 PM »
((Elaine)) - I'm sorry to hear your husband is ill.  I know you depend on him to help with your daily needs.

I had replied to your post last night, hit the post button and poof, the post disappeared into cyberspace . . somewhere, not here!!  Ugh, I hate when that happens!

Do you think your husband needs a second opinion?

I know your husbands appointment came and went already, did you end up going with him?  I know it's hard for you not to be superwoman (although, the cape does look good on you!).   ;)

As you know, you have to be careful when researching medical subjects on the internet.  Each person is different and reacts to medicine and procedures differently. 

It is so disheartening when medicines are priced so ridiculously high that a person can't afford to take medicine that might help.

Sending a long-distance hug as you and your husband navigate this bend in the road.

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

warmwaters

  • Hero Member
  • *****
  • Posts: 1854
  • Just keep swimming - Dora
Re: Husband is ill! Now what?
« Reply #17 on: April 16, 2018, 01:57:41 PM »
Another supportive voice here.  With a gentle reminder to take of yourself, too.

You are use to dealing the "administrative" parts of being really sick - the claims forms and authorizations, making sure you write down all the details from the doctor, and carrying a set of notes from one provider to the next. 

Maybe explain how much you've had to do of that in the past, and ask your husband if he'd like any help or input for that part. Or if not, remind him you're available as a resource.

We're hear to listen. There's an old saying about shouting your troubles down a well. We've got a nice deep well here, whenever you need one.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Carolina

  • Hero Member
  • *****
  • Posts: 5536
  • —if it ain't one thing, it's another." Roseanne R.
Re: Husband is ill! Now what?
« Reply #18 on: April 17, 2018, 09:49:39 AM »
Thanks so much for the advice and support.  The appointment last week turned out to be a bone marrow tap, so it is this Wednesday that he will have his evaluation appointment on Wednesday.

I have been doing lots of research, and accessed his CT Scan results, on line.  That information, plus what I've learned from the CCL site have more or less convinced me that he is still in the very early stages, and probably won't start any sort of chemo and won't be eligible (due to stage of his disease) for any clinical trials.

He thinks his tiredness is not due to his CLL progressing.  I think it is from his age (79 next month) and his determination to push himself physically every day.  So he is naturally exhausted, probably not from the progression of the CLL.

I won't offer to go with him (I have before) because he wants to be in control and guard information.  So this is his issue.

One thing is certain, the very best drug is Imbruvica.  This drug would cost us about $8000 a year, after insurance pays its part.  If I am right about the current stage of his CLL he will NOT be eligible for clinical trials.  There is a ton of literature about the criteria for treatment of CLL.

So we will see, after he sees his general oncologist.  There is a CLL research physician at Duke Medical Center, recommended by many on the CLL website.  My husband has shown NO interest in seeing her.

He likes his 'general oncologist' so he makes the call.

I'm dealing with so many issues in my own health, and am so exhausted and in pain most of the time, that I will leave this up to him (as if I had a choice!).

Again, thanks to all of you.  Now that the test results are coming in, I'm much less worried for the state of his health.

But then, it's always something!

Regards, Elaine

Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

SjoGirl

  • Hero Member
  • *****
  • Posts: 1920
Re: Husband is ill! Now what?
« Reply #19 on: April 19, 2018, 01:53:07 PM »
Oh Elaine, wish both of you strength, rest when you can get it, and peace.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

susanep

  • Hero Member
  • *****
  • Posts: 3605
  • Each Day Is A Miracle !
Re: Husband is ill! Now what?
« Reply #20 on: April 20, 2018, 02:43:08 AM »
Dear Elaine,
I am so sorry to hear of this. It is so much tougher when it's two both in need of help. You both are in my prayers for God to have his arms around you both. I hope it gets what he needs, and that you both can find a place with all that is going on to have some rest. The cost of medication these days is just over the top. Hopefully, something will work out for all the medications you both need.

Hugs,
susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi