I'm Talking 'Bout VEGAS---by robin

Whew...now that Deb popped in with a report on her, won't call him her better half so how about her other half, AKA, hubby (I know there were way too many commas there but I kind of like adding them since I am really poor at punctuation), I will take a pass on dogging the medical community for a spell.

Really, I just want to brag a bit that I am heading to VEGAS in the morning. Should be a nice few days with scant worries, other than how my three feline children will be managing without my lap, lovin' and attention. Now don't anyone get worried that the cat children will be neglected as they will be attended to by their human Aunt (my daughter) while I am being a NASCAR redneck in VEGAS. I'll also make the mandatory calls home to talk to the cat children while away and somewhere in my heart I know that I will miss them more than they will miss me.

So, while I am enjoying the thrill of race cars zooming around in a circle, counter clockwise for hours and hours with the occasional spin out to toss an added thrill to the mix (in VEGAS) I will promise to think about each and everyone who isn't there enjoying the redneck excitement of NASCAR with me.

Keep your spirits high, while I'm in VEGAS...robin
sorry, I got carried away with the VEGAS thingy...oh drat, I did it again

What Robin Said........by Deb

Yes, what Robin said & more in regard to my hubby,
What was to be the best possible procedure to remove a prostate, in one day out the next, quick and near painless recovery has turned into 4 days & counting. Friday will be day 5 and I am doubtful he will come home till the weekend at best. The actual surgery supposedly went off with out a hitch & as far as the insecions etc he's not in any pain at all.
As Robin mentioned, the oxygen saturation was his first problem coupled with the hospital not having reserved a room for a scheduled surgery patient we found ourselves in IUC, there he laid & I sat. Yesterday evening we were finally placed on the urology floor, but not before his lack of necessary activity caused him to develope penumonia..that was addressed with increased antibiotics, oxygen, breathing treatments..so we felt things would get better quickly now. But upon arrival (after yet another 2 hour drive) this morning his abdomen was swollen, his internal plumbing isn't working. A KUB X-ray was done this afternoon {results from Dr should be ready in the morning}~hope to catch him! Also hubby now has a tube passed via his nose to the stomach to suction the fluids causing the swelling. Maybe after a night of that, hopeful for a good KUB result he can come home sooner than we think...it's a wait & see world of unknowns for us at this time, don't know what might go wrong next or when he can be discharged??? But as far as we know from all he's had done & his pathology report he is cancer free & we will work through the rest one step/day at a time, find the laughter again & might even talk more about his prostate than my liver for a good long while now.
Be~Positive, Deb

It's Always Something---by robin

Thought I'd be brief but wanted to post a line updating on Deb's hubby and his post surgical experience. It appears that pharmacies aren't the only "problem" and that hospitals tend to move at their own rate of speed.

Jerry had a bit of trouble keeping his oxygen saturation up after surgery so he went to ICU after recovery. Seems if you are not comatose, ICU doesn't know how to care for a patient that needs a bit of extra observation but isn't critical. So, Jerry sits there without staff getting him up and moving. Deb sits there without receiving any aftercare instructions for when they get discharged. She is worn out and frustrated as (I am sure) Jerry is.

So, I'm asking y'all to keep them both in your thoughts for the next few days/weeks or whatever this turns in to. I don't want to overstep my "friendship" in discussing their medical "stuff" but wanted to share...It's Always Something.

Keep your spirits high...robin

This and That---by robin

It's Monday morning and I just spent the week-end with the grands...was good as I got to see four of the five girls. Got my 12 boxes of Girl Scout cookies (two grands selling cookies) and popped them all in the freezer for a later time when I have a sweet attack.

Got another denial of benefits for Pegasys and Ribavirin on Friday so I placed another call to the APN and pharmacy. What is this...worked it out to get the rescue meds so let's deny the treatment drugs, AGAIN? Now it is a challenge to determine which of us has more determination...the drug company to deny benefits or me to fight them.

Deb's hubby is in surgery, as I write this, so they are in my thoughts. I've already received a brief note from her and I expect to get an updated version once he is in recovery. Directing all my positive energy and thoughts towards the surgeon's skill with the laser and Jerry's healing.

Keep your spirits high...robin

Got It Figured Out...Again---by robin

Talked with the Advance Practice Nurse and it appears the legal loop-hole (AKA more wasteful healthcare dollars spent) has been found. I can get my "rescue" meds through my physician's office and insurance will cover it. Now mind you, being an RN, I am fully capable of administering my own injections especially since I will be injecting Interferon at home and I self-injected insulin after my transplant. But for some reason, it is a better option for my insurance company to have me go to the doctor to receive the very same injections that I can give myself...sooooo OK, I'm ready to play.

Now we are back at step one and that is getting approval for Interferon and Ribavirin so my pharmacist can get the prescription filled and I can start treatment. Can we have a small cheer for the little man in this fight...Here's one for US.

Keep your spirits high...robin

I "GET" it---by robin

I've almost accepted the idea that since we are considered middle class, there is no help available for treatment medications for hepatitis. We have checked into drug assistance programs and changing insurance but I'm limited in options since I'm on disability. What's left is to challenge the insurance companies with "reason".

So, what is the "reason" I talk about? Doctors say I will have about 10 years on this liver without treatment. That means that in a period of 6-7 years, I'll start having problems and that means my health care dollars will increase significantly. Then by year 10, insurance will be faced with paying for a second transplant.

Does any of this make sense? Not to me. Why is it when two people get an education and work to provide for a comfortable retirement they can be wiped out by a medical crisis. I "GET" it now. Since hepatitis is slow moving, we do have time to try to figure out alternatives but what if this was cancer...where you have no options. We would be forced to completly wipe out everything we worked for...give up our house and cars to pay for medications. This I have a problem with.

I've read all comments and do look into options you pose. I appreciate you taking the time to post and I feel it's a matter of time and things come together. I do believe that everything works for the best...maybe not what we want but in the end, it's the best.

So...keep your spirits high...robin

Treatment on Hold---by robin

This is frustrating but it's just a part of life, I suppose. Treatment is now on hold. First off, my co-pay for just the interferon and ribavirin exceeds $1000 a month. Then, insurance pays nothing towards the neupogen, which everyone needs and that is between $2000 and $3000 a month, per my pharmacist.

Needless to say, my prescriptions didn't get picked up. Now, we will have to do some research to determine if there is any way we can qualify for discounted medications through the drug companies.

The good news is that when I went to see the Adavance Practice Nurse to get my prescripitions, I found out the results of my liver biopsy...Stage 1, Grade 2. So, I do have time to search out means to treat but it's still frustrating.

Keep your spirits high...robin

Checking In.......by Deb

Even in the lull of time between year end holidays & spring's arrival time to do at least a few things I want to evades me. Yes, going without power for almost a week was a bummer, but others went longer and as I write some in my area are still sitting in hopeful, frustrating darkness. The time without electricity could have been better if our generator had been totally committed to the internet. Our part of Ark looks as though a tornado has gone across it as far and wide as the eye can see. Trees are splintered off or uprooted, broken power poles aren't uncommon to see, some people are working to clean their yards, others as I drive along seem to be just standing in the midst surveying just where to start. My own emotions swing from amazement to devistation at some of the old beautiful trees stripped of their majesty.

My job is demanding more time than I had originally intended, but I'm Thankful for the opportunity & health to have a job.

My husband & I did manage to spend time with our sons, daughter in law and a dear girl friend of one son...this weekend. In celebration of hubby & the girl friend's birthdays 7th/12th of Feb.
It was a pleasant distraction from daily life, which seems to continue to become more & more complicated.

I'm doing well other than occasional tiredness, still wondering is it my body or brain that's more tired?
My husband & I are in the process of seeing doctors & deciding on treatment options for him. He was diagnosed with prostate cancer recently. It will be a turning of tables from when he was my caregiver just 3 short years ago during my pre/post transplant. I hope I do as great as he did in my caregiving. He was so patient, but I was a good patient. LOL Guys aren't always the best patients & I'm not real blessed with a lot of patience. Age has improved that some. Time will tell.
I miss having time online to visit with my pals,,,and my Dear Robin WOW hasn't she done great here with the blog? Gotta commend Robin, even in the face of her hepC treatments, rejection issues she still finds time to blog, be a wonderful Memaw, wife, cat parent..& then some.
It's really going to be great to get together again in Nashville for the Liver Walk in April. So, very briefly here was I, with a touch of NW Arkansas news.

Be~positiv, deb

I'm Starting Treatment---by robin

It's official, I go in Monday to start the paperwork for insurance approval to start treatment for Hepatitis C. Since the hubby and I are heading out to Las Vegas for a visit with the eldest son and daughter in law, I am electing to post-pone my first injection until March.

I may also be changing my antirejection meds because my kidneys are not pleased that they increased the dose of Gengraf. This will be the third change in the medication (and there aren't that many to chose from) but that's OK. It's all about keeping everyone happy, right? We want our liver happy and we want our kidneys happy so medications can be tweaked to do so.

Keep your spirits high...robin

Can I Hear A Big WhoooHoooo?---by robin

I just received a call from my transplant coordinator and a fax with orders for labs to be done on Thursday...complete with a PCR. Treatment for Hepatitis C may NOT be out of the question. So, I am very excited. That is what the big WhoooHoooo in the Title is for.

To those who have attempted treatment, that may sound somewhat bizarre (to be excited) as it is essentially signing up for "flu" for the year. But for someone who has lived with this disease and came close to dying with it, that is one of the most encouraging phone calls I've had. I'll happily inject my body with Interferon and have my twice daily ribavirin, plus whatever rescue drugs that are needed to become an official dragon-slayer.

Now I want to salute my partner in blogging (who was without electricity for a week due to the ice storms in Arkansas) by telling a story on her. When Deb and I first "connected" and I was talking about treatment, I received a very sweet and supportive e-mail from her and she was asking about the drug, InterFEARon. I totally love that spelling of the drug because I know that the dragon virus "will shudder" in fear with every injection.

So, to end this post I will add...
Keep your spirits high...robin