This may be a tad long

[expat]

I am new here, but I am not the patient,  my husband is. He started treatment with Harvoni January 15th, and  is about to turn 63 years old, and has a rather complicated medical HX.

As near as they can work out, he was infected with HepC in 1984, from blood transfusions following surgery for head and neck cancer. He had an open neck dissection, hemi glossectomy, and a partial mandibulectomy.  He also has no carotid artery or jugular vein on the left side, and is missing a fair bit of musculature on his shoulder and neck.  At that time, they more or less did what they could, and told him to get his affairs in order, and gave him a life expectancy of 6 months.  25 years later, we met and married.

He is a Vet, former USMC and US Army. He had never signed up at the VA for care, so he finally did in 2010. He had some edema, a bit of breathlessness on exertion, but given his previous surgery he was never able to, for example, work with his arms over his head, and I think he was putting a lot down to those sorts of limitations.  He hadn't been near a Doctor for any reason in all that time, 26 years or so.

Of course, he tested positive for Hep C, and he is type 1A. We adopted a wait and see approach, until the Doctor  offered him treatment. It was against my better judgement, I thought the thing to do would be to carry on as he was, compensated and all. He was promised some pretty outrageous cure rates, and so wanted to start immediately.  As it happens, given the sort of lab results he was getting at the time, he would never have been a candidate, but that is water under the bridge now. His viral load back then, was 27,000. He was undetected in 11 days.

After 5 weeks of a proposed 48 week treatment plan, triple therapy with Incivek,/peginterferon/ribavirin, he crashed and burned. Total liver failure. They started the workup for transplant, gave me a list of the options in Centers to choose from, and we were airlifted in the middle of the night to the Nashville VA/Vanderbilt Hospital. I chose them because they were a small team, which I prefer.  I had only been in the country a year and a half, and he wasn't in any state to be offering his advice.  It was a great choice as it happens, I know they are the only reason he pulled through.

 Never a good thing to have to undergo such drastic surgery when you are already in a debilitated state, and are an urgent case. He was listed on UNOS with a MELD score of 40 the first week there, and spent the next 3.5 weeks as an inpatient waiting for a donor. He was a very ill man, and those were very bleak times.  His transplant was the end of May 2012.  He had a quite complicated recovery, with a bile leak, pneumonia, infections, pulmonary embolus, and a cardiac arrest.  All up, he was in the hospital for 3.5 months, 2 of those in ICU. We were away from home almost 5 months in the end.

While he was in Nashville, he was also diagnosed with autonomic dysreflexia. His blood pressure can fluctuate like crazy, 126/80 now, in half an hour he can be 260/110, and then back down, but down too far, I have seen it as low as  64/40. It seems that was always an issue, he had lost/damaged baroreceptors from the time of the cancer surgery, but had been able to compensate. Following the trauma of the second surgery, in 2012, not so much. We have meds now to control the swings, but as time has passed he needs less correction that he first did, so that is positive.

Initially he went twice a year back to Nashville to see his heptologist, now down to once a year, and we could call there any time, day or night, with concerns or questions. They had an excellent Nurse Practitioner willing to go to bat for him, or any of her patients, and he thought the world of her. She had made it clear to my husband that he could start the new regime, when it was approved, at their clinic. Unfortunately, she herself was diagnosed with pancreatic cancer, and passed away last year. Without her to advocate for him, that proved no longer an option.

As he is a VA patient, we have had to contend with the rules as they are, not as we wish them to be. Given the cost of Harvoni, the VA local to us must foot the bill, so we are back where the entire journey began, with a VA we mistrust. About the only shining light in any of this, is that our Transplant team doctor is controlling the treatment remotely. He doesn't think much of the local talent either, in fact he advised us to file a TORT claim, which we did. As the Doctor proffering the triple therapy in 2012 was not an actual member of staff,  only there on contract, we lost that case. So we are all wary. 

He is now on the end of week 6, of 12, of Harvoni. He says it's hard to say if he has more fatigue than usual, what does a single drop of rain add to a deluge. If anything I would say he has more fatigue that in the past, he actually fell asleep today sitting at his desk. A couple of weeks ago, about week 2, he had a lot of energy, huge amounts, more than I can ever recall. That isn't the case, at the moment, tires very easily.  Headaches? They are something he has had every day since the transplant, the result of the BP problems, but on the Harvoni he has been 3 weeks without a single one. Sleeps like a baby, but then he always has done.

He has persistent post nasal drip, and a stuffy head. Beyond that, very little by way of side effects. He has been so sick in the past, he says this is a cakewalk by comparison. He takes a laundry list of meds as it is, for rejection, insulin for the diabetes the steroids cause, so one more pill a day is really not a lot.

He started with a viral load roughly 8.5 million. It had been 5 million 2 months after transplant.  At week 2 after starting Harvoni, is was <155, and this last time it reads <15. Still detectable, but not enough to quantify. I am cautiously optimistic.

So, he's getting there. He has proven to be very hard to kill. He says imagines the little virus bugs to look like the ones you see on the television ads for Raid. His wear little lace up shoes , and every time he takes his pill, he imagines them keeling over on their backs, legs in the air. Must be why he always says..."Die vile scum!" 

That was a tad on the long side. None the less, that is by way of an introduction. I will have a good look around, there seems to be a font of information here.  Thanks for the opportunity to tell his story as I've seen it. 

[Mike]

Tell your husband we are all pulling for him!

Best wishes, Mike

[Islandgirl]

OMG, Expat!  You guys have really had the roughest of times.  Welcome to our forum family - you'll find a lot of good, caring people here to support you and cheer you on.  Many are extremely knowledgeable and the moderators certainly are!  Please keep us posted on how you both are doing.  Sending you both healing light and prayers for a successful treatment and attaining SVR/Cured! God bless you both!

I just took my last Harvoni pill this evening, but will still be around sharing information and eager to know how everyone is doing.   ...Islandgirl

[expat]

Thank you Mike

Congrats on getting to the last pill Island girl  

I will say it's been no picnic, but still we will get there in the end.

[Islandgirl]

Thanks, and Kudos to you, Expat!  I'm sure your husband is a great guy and does appreciate and love you, but I have to say - he sure picked a winner when he found you (or you found him).  You get lots of gold stars for your love, compassion and great determination   That's real love - you rock girl!  ...Islandgirl

[Bituman]

Thanks, and Kudos to you, Expat!  I'm sure your husband is a great guy and does appreciate and love you, but I have to say - he sure picked a winner when he found you (or you found him).  You get lots of gold stars for your love, compassion and great determination   That's real love - you rock girl!  ...Islandgirl

X2 what IG said!

[Trenz]

expat...Thank you for telling you and your husbands story.  I have been wallowing in self pity and now I feel ashamed.  My hep c journey pales in comparison.  Islandgirl is absolutely right, you are a winner and I'm sure your husband appreciates your love and support and it's a big factor on why he is continuing to bravely fighting the "vile scum".  I hope we all kill the little virus bugs.

[Tpropane]

Dear Expat, If he can rid himself of the Hep C....it's one more step on the road to a healthier new hubby. Wishing you both all the best.
TPropane

[kate0b1]

@expat, what they say +1

kate

[Karen1124]

@expat,
Wow what a journey you and your husband have been through!!
Well hopefully this drug (Harvoni) will cure him and all the rest of us! Saying a prayer for both of you! Keep us posted on your hubbies progress! ......Karen

[expat]

Oh dear. I am really very red faced here. I wasn't looking for compliments.     I  really appreciate the kind words!
Just telling the story as I see it was all.

Trenz, you have no reason at all to feel ashamed. Everybody has a unique trip through this, all of their own. Some are harder than others, some are easier.  It doesn't mean anything, in the grand scheme of things, other than it's simply a  different experience. Every one of them is valid.  As my Husband says...'your mileage may vary"

They had support sessions in TN for the caregivers, and man I hated those. I didn't want people just coming in to think ALL people would have the ride my Husband did, and get frightened or scared they would be the same way. I tended not to volunteer much, unless pressed to do so, after a time or two.  I also learned, very early in the piece, that I shouldn't compare his lack of progress to some of the people who came, and went, in really very short lengths of time. Our nurse told me that he was sicker than any she had seen, and that you can't compare someone called at work to come for transplant with a MELD of 16, to someone flat on their back and singing the Frito Bandito song for 17 hours straight. Apples and oranges.

I think what matters most is that we all get through it, patients and their caregivers. With a little help from our friends.

[Islandgirl]

Expat,  No one would ever think you were "looking for compliments", but you deserve to tell the story and we appreciate you sharing it with us.  However, I believe (and so do other members of our Forum Family - now your family too) in giving credit where it's due, and I think you are awesome!.  It also had to take some courage for you, as it did for all of us, to tell us about what you and your husband have gone through.  We recognize this - and thank you.   

We can't measure our progress, or lack of it, by that of others - but we do learn from each other and being able to listen and give support to each other is an important part of the human connection.  Our Forum Family gives us a safe and compassionate place to do that.  Your last sentence is absolutely correct and we will get through it!  ....Islandgirl

[Maddawg46]

He's doing great!  Tell him thanks for serving his Country.  He's a Marine.  GO ON THE OFFENSIVE!

[expat]

Thanks all, I appreciate the kind words.

He had a fever yesterday, not high, but a fever notwithstanding, and a great deal more fatigue than he has had. I've to keep a sharp eye on that, I don't know whether that's a Harvoni side effect, or do with his Liver. Fever is an early sign of rejection, and I have to let them know at the transplant center if it gets beyond a certain point. Today or course, he seems fine.
Sometimes I get a very strong sense it will never really be over. I've stood over this poor man 18 hours a day for years, handing out pills, doling out insulin and Gengraf, taking temps and blood pressures until I am cross eyed, and still, more comes along to deal with.  I've 18 alarms set on my smartphone, and every darn one of them means something wants doing. I think, it might be that I have a case of Caretakers Syndrome 

[Amj1951]

Thanks all, I appreciate the kind words.

He had a fever yesterday, not high, but a fever notwithstanding, and a great deal more fatigue than he has had. I've to keep a sharp eye on that, I don't know whether that's a Harvoni side effect, or do with his Liver. Fever is an early sign of rejection, and I have to let them know at the transplant center if it gets beyond a certain point. Today or course, he seems fine.
Sometimes I get a very strong sense it will never really be over. I've stood over this poor man 18 hours a day for years, handing out pills, doling out insulin and Gengraf, taking temps and blood pressures until I am cross eyed, and still, more comes along to deal with.  I've 18 alarms set on my smartphone, and every darn one of them means something wants doing. I think, it might be that I have a case of Caretakers Syndrome 

expat, I think you are courageous and a wonderful wife : ) I hope you take time for YOU. Not only do you deserve it you NEED it. Until my blood test showed clear (I am in 8 weeks of a 12 week treatment) I never knew how deeply my parents were affected by this disease and for you its complicated by other things too.

I hope you feel comfortable coming here. It can be a life saver and there are some great REAL people here : )

Meredith

[kate0b1]

@expat, is there someone who could spot you so you can get some breaks in the action? it sounds as if you could use a shopping day, a massage or even just a nap 

kate

[expat]

Not really any way to get a break, although it would be nice. He can't be left on his own, so if I have errands to run, he comes along. Sometimes he waits in the car, other days he feels up to tagging along. I don't have family in this country, and my husband's only surviving sibling lives in DC.

Once he is hopefully rid of at least the HepC things might ease up a bit. I'd settle for getting rid of the cold grey bucket of suck this winter has turned into, that would cheer us all up quite a lot!

[Amj1951]

Not really any way to get a break, although it would be nice. He can't be left on his own, so if I have errands to run, he comes along. Sometimes he waits in the car, other days he feels up to tagging along. I don't have family in this country, and my husband's only surviving sibling lives in DC.

Once he is hopefully rid of at least the HepC things might ease up a bit. I'd settle for getting rid of the cold grey bucket of suck this winter has turned into, that would cheer us all up quite a lot!

expat.. I don't know what your income and insurance covers but you might check to see if you can get what is called RESPITE care. I know Florida offers this.. when you are the sole care taker.. it allows help for you to get out and do things fun for yourself.. shop..etc.. It also offers nursing care if you need that too. This kind of program is set up for people in your situation.
If you have the money you can pay for this. Its like a sitter but on an adult scale. You might search for this in your area.. through google even. I would check to see if your insurance offers anything like this and if it doesn't and you do not have the money you can still get this help.

Check into this. I think you can find some help.

Meredith

[expat]

expat.. I don't know what your income and insurance covers but you might check to see if you can get what is called RESPITE care. I know Florida offers this.. when you are the sole care taker.. it allows help for you to get out and do things fun for yourself.. shop..etc.. It also offers nursing care if you need that too. This kind of program is set up for people in your situation.
If you have the money you can pay for this. Its like a sitter but on an adult scale. You might search for this in your area.. through google even. I would check to see if your insurance offers anything like this and if it doesn't and you do not have the money you can still get this help.

Check into this. I think you can find some help.

Meredith

The only health care he has is through the VA. I am not covered by that, in fact I am not covered at all.

I arrived here in 2009, on a Visa that allowed me to enter the country and remain. As my Husband did not have sufficient income (just short) to meet Immigration standards, we had to use a co-sponsor. In the event that I use any part of anything that is means tested, they Government will go after them for recovery.
His only income is social security, and a tiny VA Pension. He is not service connected, and never can be, as it is impossible to file a successful  claim for compensation when your records are irretrievably lost. On that amount of money, buying health insurance is out of the question. Medicaid is where health.gov sends me, and that is means tested, so round and round we go in ever decreasing circles.

Thanks for the idea, it is a very good one, but not something I am able to avail myself of.

In good news, the extreme fatigue of a couple of days ago is gone, and with it went the fever. He starts week 8 on Thursday.  I checked this morning, his last pill is April 9th.

[expat]

8 week lab results are in. Undetected.

[Karen1124]

Hi expat,
Congrats!! Good to here! Here to the cure Harvoni! Life is Good!!..........Karen