Tuesday, May 5, 2009

It's Time for Hubby's Update

First of all, thank you to everyone for all your prayers and well wishes that you have been sending us. Just knowing that there are people out there who care, is comforting.

So, it's been a bit since I updated you all on the hubster's health. Yesterday we went to see another specialist for his Interstitial Pulmonary Fibrosis, IPF as it is known in the medical profession. There was the usual x-rays, blood tests, and breathing tests. The x-rays showed inflammation in the lungs. The breathing test showed he is breathing at 27-28% of the expected norm. And the blood tests don't give immediate results.

This Dr. has put him on the immuno-suppressant called Cytoxan. The Dr. wants to bring down the inflammation in his lungs quickly. He feels that if we could get the inflammation under control, hubby would have a much better quality of life. Also has put him on a regiment of steroids.
We were also able to discuss a lung transplant possiblilty. We were told previously that he did not qualify for a lung transplant, and that was wrong. There should be no reason why he wouldn't qualify, but doc said, "getting a lung transplant is like trading diseases." From what I have studied, it is a constant battle to keep the body from rejecting a donated lung. And the time added to life is not as long as one might think. Doc said he would have better, longer life if we could get his lung inflammation under control, than if we went the transplant option way.

So that is where things stand. I am going into town today to pick up an armload of RXs and I guess we'll see what happens. Last time we tried this, hubby had 4 weeks of migraines. We are hoping for better results this time.

Just an added note for those who have made suggestions- Our state does not have a program where I can stay home and be paid to take care of hubby. I did get some help with our electric and gas bill for the next couple of months through a gov't program. And I'm still looking for a job.
Update completed.....for now :)

***A quick Thursday morning note-the Dr.s office called last night and said NO Imuran; so he is only taking the Cytoxan. And it did not make him sick!...Yay!! The steroids made him feel better than he's felt in months..until they wore off in the evening


BreathinSteven said...

Hey ClayItAgain!

Sometimes these paths we're sent down are a puzzlement...

A lot of people have never considered what your doc said -- that lung transplant is essentially trading one disease for another... It's very true and we are told the same. But frankly, very often that "other disease" is much easier to live with... The other disease is immunosuppression and transplant and the difficult things that can cause -- but the hubster is already on a popular immunosuppressant (immuran)... And the "constant battle" against rejection is really not much different than any health issue we deal with...

And he's also right in that the time added to life post lung transplant is not as long as one might think... Typical statistics are 80+% one year survival, 50% five year survival -- you just try to make damn sure you're part of the 80 and 50% respectively... And, expectency is getting better every year. In the grand scheme of things, lung transplant is relatively new.

But life with IPF isn't exactly promising either -- and the quality of life for most post transplant IPF patients is substantially better... Your husband's 27-28% of the expected norm in lung capacity ain't that bad for the situation -- I would imagine he might not yet be on oxygen... As I approached transplant I was somewhere between 10-15% and in pretty deep shit...

I have cystic fibrosis, not IPF -- but it don't matter what you have if you can't breathe... Half of our lung transplant group are post transplant IPF sufferers and every one I've met is very thankful they took this route...

IPF often happens later in life -- I was born with my CF and I never really understood what it was like to breathe. I do now... It's been nine years since I received my beautiful, new lungs -- and they've been nine of the most astounding years of my life and I'm planning on many more... I am very lucky -- but life expectency post transplant is constantly improving and will continue to do so...

I don't know what your husband's decision will be -- but I wish him and you all the success in the world on whatever path you take... I have a website with some of my story, and a tribute to my donor at:
www.ClimbingForKari.organd I blog about organ donation at:
www.ReviveHope.comI'll keep you and your husband in my thoughts...

Love, Steve

Steve Ferkau
Chicago, IL

Sinclair said...

I am still praying for you both. I know it is easy to say when it is not me, and of course I am not a medical professional, but I think the doctor must be sniffing newsprint if he/she is planning to put him back on Imuran.

I hope it does not cause the headaches again, but if he begins to have one right away, you will know the culprit.

Others are having headaches on this medication as well:


2 Good Claymates - Dave and Carolyn Good said...

I'll be thinking and praying for you -- I understand with my hubby been on dialysis for 9 years. He had a kidney transplant one year ago but it is something we still battle with as it is never a cure. Hope all goes well.
Best wishes, Carolyn