Wednesday, April 15, 2009

Hubby's Health

Since it has been a bit since I blogged about the hubster's health, I figured I would give you all an update. As I blogged before, the pulmonologist started him on a drug called Imuran - it attacks the immune system. This is supposedly the only hope we have of slowing down the progress of the lung disease. It also will make him susceptible to every cootie out there. He can't even treat a cold now without calling the pulmonologist. Within 3 hours of taking the first dose (which was 1/2 pill) he began having migraines. So the next day we called the pulmonologist-and doc says "it's not on the list of possible side effects, and no other patient has complained of headaches". yeah and so what? everybody's not different? sure seems coincidental that the migraines started immediately when the pill arrived in his system!
Another day goes by and now he is getting 2 migraines a day (approximately 12hrs apart). And he has run out of supply of Imitrex nasal spray, which normally stops the migraines dead. So we went to family Dr. who prescribed Imitrex and tell her the same scenario - and she says "it's not on the list of potential side effects". She gives us a prescription for an anti-depressant, which will hopefully open up constricted blood vessels and another Rx for Imitrex. Also tells us we can go to emergency room, for Demerol shot to break the migraine cycle if it keeps up. She also told hubby straight to his face that he cannot go back to work, to go and apply for disability, and yes, he would be on oxygen for the rest of his life. Hubster is finally coming to terms with the reality of the situation. He kept holding out hope that maybe someday he would be able to get off the oxygen. He is not handling it well.I went and picked up prescriptions, but it did little to control the migraines.

We did go and apply for disability. What an eye opener that was! As long as hubby lives we will get SSDI (soc.sec.disability inc.)...after hubby dies I get nothing til I reach retirement age (still 14yrs to go)...if he dies before the disabilty starts, I get a one time $255! I wonder how many wives read that Soc. Sec. report every year and think they will be ok if their other half passes. It's misleading if you don't realize that the surviving spouse HAS to reach retirement age before they get any benefits. Oh and here's the real kicker- SSDI can take up to 2.5 years before starting! Best case scenario will be 3 months! I wonder how many people in these times have 3 months or better of income saved up? We were told because he is terminal, it MAY not take the 2.5 years, but no guarantees.I was flat out told to go and get a job, and not to wait until he dies. She said she has seen too many women in my position sit around and think that it won't happen to them, and them BAMMO! So now at 51, I am trying to enter the workforce again.

Migraines continued to the point that he was having 3 within a 24 hour period. Even when asleep, he was woke up with them. The Imitrex is only helping temporary, like only an hour or so; and it can only be taken 2x within a 24 hr period or he could have a heart attack.

I walked in one day and he had collapsed in the bathtub having one. How am I supposed to go out and look for a job knowing that he's going to need help every few hours? Better yet, how am I supposed to be able to concentrate on learning a new job if I do get hired? I am in a catch-22 situation. Not to mention the migraines aren't the real problem; remember he is dying of Interstital Lung Disease! I could come home to a dead body. How am I going to handle that?

So I called the family Dr. who prescribed the Imitrex (for migraines)...and yes all the Dr's are in touch with each other, so they all know what is going on. Anyways, the Dr. is out of the office and I get overly excited in trying to make the offfice worker understand the anti-depressant isn't doing the trick either. She must've thought I was yelling at her, because later that evening, hubby answers the phone and it's the Dr. explaining that she isn't a miracle worker and that I can't be yelling at her staff. She also ordered ANOTHER drug; this time a blood pressure medicine, and says these meds can take up to 2 weeks before working. At least hubby told her I wasn't yelling, and I also didn't know he had called the office before I had even came home. Dr. also recommended that he go to the emergency room if the cycle continued.

The next day I happpen to come home from job hunting and a migraine had just started, so I took him to the emergency room for the Demerol shot. The emergency room Dr. listened to us when we said that the migraines started when he began the Imuran. He suggested stopping the med for a week and see if the migraines stopped. He said just because migraines wasn't on the list of side effects doesn't mean that wasn't what was causing them. Hellooo...Thank you Doc for not being a text book Dr.!
The Demerol shot stopped the migraine, but not the cycle. By the middle of the night he was up with another one. And the intensity was getting worse, and now he was having 4 within a 24 hr. period. He would barely be able to get a little food on his tummy and MAYBE get a nap before the next one hit.

Before I left for job hunting 2 days ago, I called the pulmonologist and left message that he is now throwing up bile. Asked hubby if he is taking any meds at all and he says "I'm about ready to quit taking everything". Talk about a heart sinker; the migraines have almost gotten him to the point of not wanting to live any longer. The pulmonologist called back while I was gone, and told hubby to stop taking the Imuran for a week. It had already been 5 days since he had stopped.
I went to the store and saw a product called HeadOn. If you have ever seen their commercials on TV, you know how annoying they are. But I bought the one for migraines, and miracle of miracles he was migraine free for 48 hrs! I was bragging up this product all over the place, and then this morning, as soon as he got up...the migraines are back.

As I am typing this now he has dozed back off to sleep, but for how long this time?
It's terrible to have to keep checking on him to make sure he is still breathing. :(

Just as I was getting ready to post this, I got a call for a job interview...*keeping fingers crossed*


coltpixy said...

I wish that you both were not having to go through this. Good luck on the job interviews.

Anonymous said...

Sending you lots of special magickal healing, comforting and supportive rays ~ ~ ~ ~ ~ ~ ~

HaffinaCreations said...

My heart goes out to you and your husband.

Sinclair said...

I am so sorry to hear of your situation and your husband's pain. I know in California, sometimes a family member can be a paid caregiver for a terminally ill family member thru a state program. I know my grandmother stayed at home with my grandfather and was paid to do it, but I am not sure what the program was...maybe your state has something similar? Keeping you in my prayers.

As for the mean Dr. who is not a miracle worker (and who has aparently forgotten how to interact with humans)...perhaps he/she should be remined of the Hippocratic Oath..."first do no harm"...and to remember that sometimes people do have side effects that are not listed on the box!!

pinkeareddog said...

I am so sorry that you and your husband are going through this. I have read the prayer requests in Jan's news, but never heard the story from you.
My grandfather passed last year from interstitial lung disease. I don't understand it as well as I should. I only know that it was very hard on him to rely on oxygen, and slow movements, and warm weather. You and your dear husband will continue to be in my thoughts and prayers.

customjewelrybysolange said...

Im so sorry to hear the news of your husband and the painful times you are both facing. I, like pinkear have been seeing the prayers on Jans news but didnt know what was going on until now. I will keep both of you in my prayers and best of luck in the job interview.