Hep C Discussion Forum

boxers · Veteran Member

RE: Accepted for Transplant

Canuck · Guru

Hey Boxers,

How ya doing?

You had your cardio work-up on the 10th. How did it all work out, what all did you have done, did you have the full monty cath lab?

Hope everything is OK.

Hope you are feelin OK and doing OK (all in all).

Thinking about you. smile C.

Tig · Admin

I wish you continued success, Boxers! Let us know if there's anything we can do, there's always a way. Please keep us up to date on tests and progress, we're all pulling for you! If you manage to "rent" the services of Chris, RC's best half, you'll be set. She's a wonderful person and has some serious qualifications. If there's anyone that has "been there, done that", it's her. What a team she and RC make.

Good luck with the upcoming testing! smile

boxers · Veteran Member

Thanks RC, my husband actually stayed at the silver cloud when I was over there the last time. It is hard to make arrangements for an apartment without dates so we will probably follow your lead. Cardiologist Tuesday...another test off the list. Hope you are feeling good...probably good just to be home. Maybe I can rent your wife for a few weeks..lol!

Boxers

robertsamx · Guru

Hi Boxers, sounds like the procedure went well. At your 6 month mark when you get your extra points you really should have a bag packed for yourself and your companion. You should also have a separate bag packed with all your bathroom-shower needs- toothbrush- just everything you use now, get a bag ready to go. We went out and bought everything we used in the morning and had it packed and ready to go. The clothes was a different story. We did not have that ready because you dont know if the call will come in the fall,spring or summer and hopefully not the dead of winter. When the call does come you are so overwhelmed with emotions it make it hard to concentrate on packing clothe. All you can think about is getting to Seattle as fast as possible. I blew it when it came time to pack the clothing. Thank god for Amazon-Prime (really). Pack really light comfortable stuff. Like sweats and shorts. It should be easy stuff to put on. Your just sitting around the first month or so.Im 220 miles from Seattle and it sounds like your 35O ish miles away. The pass (snoqualamie) is not that bad in the winter. I have drove over it many times in the winter and the state keeps it pretty clear of snow and ice. all wheel drive is a must however. Being that you dont know when the call is coming its impossible to make plans for travel or housing. We contacted several places that had furnished apartments and made some contacts with the people that rent them out so that we had established a dialog with them . You should be aware of the fact that you must stay in Seattle at least 6to 12 weeks after the transplant and housing at a hi rise apartment cost 3to4K a month for a one bedroom furnished, and up word to 6k For a 2 bedroom. And dont forget meals. Its not cheap.we stayed 3weeks at the silver cloud on broadway which is just 3 blocks from Swedish and with meals it was north of 6k. The last 3 weeks we rented a 2 bedroom furnished apartment at a home that was just about 4miles from the Hospital and it was 68.00 a Day. It was a very good deal! I will provide you the details on this apartment in a PM. As far as a car over there is conserned you can use UBER, its cheap and fast.There are a couple of Transplant housing centers close to the hospitals- Swedish will provide you a list. You should start that search now. Any questions just ask over at the LETS TALK TRANSPLANT thread. RC

Tig · Admin

Hi Boxers,

Wow, I'm impressed! From my vantage point it sounds like you actually have things figured out very well. There are a lot of steps in the process, but you've mapped them out pretty well. I have to believe that you have time to polish the process and by the time you're called, you'll have it down to a science. Just stay on top of the planning and it's going to work out, I'm sure of it.

I like the $59.00 air ambulance policy, too. Who did you get that through? When I was doing a lot of scuba diving out of the country, I had a plan through Duke University that included flight, medical care and decompression services if required. Thankfully I never needed to use it. It wasn't as good a price as you're getting though! That's excellent. Any chance you can get that set up for your transplant? That would have you in Seattle in no time. Those Gulfstreams really move! My son in law was recently medevaced out of Africa following some problems. The fly him out on a Gulfstream and into Germany. Didn't take them anytime at all to get there. He's doing fine as a result of the good medical care. Those flight crews and medical personnel are the best.

I'd like to see those pictures. I bet that was something to see! Amazing stuff nowadays and you're benefitting from it. Keep approaching this with the attention to detail that you have already shown us and everything will fall into place...

Canuck · Guru

I'll say!!! (what a journey), understated, but I get ya. This IS quite a trip alright. You are on your way!!, as scary or unwanted as many parts of this are, will and can be, there are the most lovely parts to be seen with this to come - life, health, living, and all the most important huge and tiny things attached to that are going to be yours!

What a comfort to know you are starting off on this part of the journey with having already whipped that damned scourge virus out of your body long ago - one very good thing, knowing you need not ever contend with dealing with that virus again, and a real bonus start for your new healthy liver. Couldn't be better circumstances that way.

Ya, thanks for explaining it to me more - I am seeingyour logistics far more clearly - you obviously are waaay ahead f myon getting this importnt part figured out. Good on you, getting it ll figured out, all the possible in's and out's - it is and will be a big part of doing "long disatnce" medicine, and I am impressed you have got a lot of it sussed already. It will be good to know what Seattle accom. RC can pass on to you as well. I KNOW you will get it all figured out.

I know in Vancouver (BC) they have one, maybe 2?, apartment type places, "quite" close to major hosp., extremely walkable (for the non-infirm), exclusively for liver transp. pt's and family members, 2 bedroom I think it was, is "in demand" and not always easily available when needed on a sudden basis. But the beauty of the place(s) was that the hosp. utilized it/reccommended it as "a place" a pt. "might" be abe to get if they were being transplanted. The hosp had a "list" of motel/hotels/rental options for the pts' to suss out, to try to arrange something (if possible) ahead of time. I expect you have already been given a list of "possible accomodation places" from the "social services" arm of the transplant team that they must surely have?

Nothing on your scale, whatsoever, but I had to make investments in my HCV treatment decisions too. I can relate somewhat in trying to figure out the logistics. The priority for me of course was to get the right/best treatment, so, I had no choice but to travel, we too had to work out things like time involved/distance/cost, and a "small" mountain pass", weather, etc, to get back and forth. But our trips only involved mostly single night motel overstays tho, and of course not anything like the imperative importance of you being there when they say. I KNOW you will get it figured out.

ew, glossy 8x10 techni-colour photos! Well, if you can handle it - obviously your doc thought you could - I WOULD be wanting to see the photos (if it were me) but, that's just me, some fok don't want to know EVERYTHING, others do, and have a great need to. One day soon, that photo will be looked back on, like a "was", and a "no longer", a post-card remembrance of a bad vacation since replaced with so many vastly better delightful vacations to come.

I LIKE the doc who say "call me" if no repeat CAT order is surfacing within 2 mos.

Wow, unreal, 59.00 for whole family for air ambulance!?

Fingers and toes crossed you get a brilliant report from the cardiac cath. lab, tell them you will settle for an OK one, but that you are not leaving until you get it.

Did you get sewing and mesh for your hernia, or did they do it all with sewing?

Getting prepared, sussing and figuring IS hard, but "kind of" in a good way, it also serves to be keeping you occupied during the wait(s). None of this easy is it?, but, it is the right path. C.

boxers · Veteran Member

Canuck, first, I got the full color photos (crystal clear) of the tumor prior to the ablation then as they preformed the ablation and the remnants of the tumor.... a lot bigger than I had imagined. My ablation surgeon was great and down to earth, he let me know that sometimes you get too many cooks in the kitchen and if I haven't had a CT ordered in 2-3 months call him and he would order it. Nice to know that he realizes this many docs...things do fall out. As far as my location and getting to Seattle, Seattle is actually the closest transplant center to me. I am concerned about travel time especially in the winter. There is a treacherous pass..Snoqualmie...you have to cross in the winter. It should be ok by March. I plan on flying if there are flights available...they leave early morning until early evening, 1 hour flight. I am concerned though if they call me at midnight.....it probably would be faster to wait until a 6am flight. Spokane is 30 min. away, airport is 45 min. away in Spokane and then 45min from Seattle airport to Swedish. The team knows of my location and even has a member of the team in this area. Other than the surgery, getting there really is a major concern since you are on a tight time frame. Lifeflight flew me over when I had the hernia issue in a private plane....that insurance plan with air ambulances is a life saver and very cheap, $59.00 for the entire household per year. Never saw a bill. Most insurances don't cover helicopter flights....surprise to me they covered the plane flight. My cardiac study is on the 10th and hopefully nothing major after that. I appreciate your interest and concern...weird how I was pretty healthy when I started reading this forum...more about treatments and then how fast this progressed. I will always wander if that Interferon/riba accelerated my condition....I went from a 2 to 4 in short order. Oh well, will never know and can't turn the clock back...at least Harvoni kicked its butt! What a journey....

wendyo · Guru

Ah nice to see Boxers surface and that the ablation is a thing of the past now. Keeping the prayers going :)

Canuck · Guru

Oh boxers, I am SO gald to hear from you! You said it all, with that ... "I am in full freak out internally, lol"! I really appreciated hearing your good full report, on everything, and I do feel badly and apologize for not recalling when you were going to be going through your ablation, I would have (at the very least) sent good vibes your way the day before and the day of - but, know we here, are sending these vibes EVERY single day to you, even if I loose track of dates and times! I was very relieved (and interested) to hear about the ablation, and mostly that you got through it and tolerated it all OK. I think you downplay the stress you are under, and all the stress in the culminating events (all the events that have led you to the best medical attention/help and intervention you have and will be receiving)! You are certainly approaching everything with a great deal of bravery and straightforward methodical effort. Some of your efforts here, I am sure, have and will be herculean, and no doubt you will impress us (already have!, with your steadfast work to the goal of wellness) but maybe you will just surprize yourself as well, at how well you will be able to do and tackle all that is required of you.

While you were quietly dealing with your ablation, still, you were checking in on RC - nice.

Once I realized I had missed your ablation date - that's what spurred me to re-read all your threads, and I re-reminded myself what you had already said about you prior meld just like RC did. RC knows these meld things, and no doubt you are mastering that learning curve too - mostly I am not well-versed in that at all. Very nice you have a first hand expert here who know the ropes like RC!

In re-reviewing your thread, it also reminded me about one of my "blanks" about you - noting you were from another state, but dealing with work-ups in Spokane and getting assessed/listed in Seattle, I had been wondering how you could be so physically far from Wa, one foot in one state and another in Wa. As well, you had mentioned something about "the missing of critters", so left me wondering if you had already re-located or were about to relocate, etc., etc. But your very good post of today really helps clarify that, clears that situ up much better for me now. Still, logistics just makes this all a bit more difficult when you have to factor in time, distance, travel/relocation like you are having to do. Yes, it must be difficult to know ahead of time how best to approach things!

"Real" can be a slow but also sudden and shocking state to be in - 'surreal' is a good normal reaction and coping result (I would think)! Expect vacillations, just ask RC how many arguments, he may have had with himself, how many mindsets he may have had to work through, to reach the right amount of accepted decisive realizations. Lots of repeating internal talks I am betting. Practise makes perfect!, but really, I hear there IS no such thing as perfect anyway, overated - perfect may be nice but is rare at best! - you have time for these talks and thinkings to play out to land where they will go or need to go. You sound like you have a VERY good head on your shoulders, great circumstances around you, and I have every confidence you will be ready (and are) to be the very best candidate to receive a lovely new liver to gain a new lease on life. You, I am sure, will find all the ways to deal with everything you need to, and maybe it will be just a little easier getting there with all the help of your friends and family around you, your medical teams, and us too, you know we will all help where ever we can.

What kind of "pics" did they show you?? Glossy photos of your tumour/procedure, or, you mean imaging?? he CAT scan movies/stills?

Good, about the "back-dating" to Sept 6. Good you have dental and cardiac lined up. It IS a process alright!

Heehee Nice you knew a couple docs there (from prior) with hilarious humours, but just bad timing to make you laugh with a fresh hernia repair! C.

boxers · Veteran Member

I am in full freak out internally....lol!

boxers · Veteran Member

Had the ablation on the 14th...sore for awhile but all is well. Went for my post op yesterday and they showed me the pics of the tumor and the procedure. I asked him if they cauterized and sucked it out at the same time and he told me no...more about keeping the precious points to transplant. I must say that the pics. made it real although the whole thing is still surreal to me. I think that is how I cope. My 6 months actually started on Sept. 6..they accepted me and put me in an inactive status until all my tests are completed but I get to keep my time, so March 6 will be "6 months". I am not sure who the Dr. A and M is but I had two docs on the transplant team come see everyday when I had my hernia repair and they were hilarious...I really looked forward to seeing them everyday, I will have to look at my records and see if it is them. Do my cardiac testing on the 10th and a couple more minor things...dental check etc. and I will be done. I was going to ask you the name/address of the apartment you stayed at. Also, where do you recommend staying in the beginning. We won't have a car there...so it will be walking or cab. We may change our mind but it is an 6-8 drive to Seattle from Idaho so it may just be a hassle. I hope you are doing well and shortened your med. list. I wish I were you and this first part was a memory. Will keep you posted regarding testing and probably will pick your brain down the road. Thank you for your concern.

robertsamx · Guru

Hi Boxers, I went back and read in the (duel hospital registire) thread you started and see where you are aware of the HCC 6 month waiting period! Also that your meld was 14. With a meld of 38 you will be at the top of the list. Your in goodi hands with Dr. P. Keep us updated. RC

robertsamx · Guru

Hi Boxers, How's it going? What did you think about the Microwave ablation? Im interested in your experience. Did you know that once you pass the phase two hurdles and are put on the active transplant list, you qualify for 24 meld points? There is a 6 month wait from the day you go active, but after 6 months you will get the 24 points. If your compensating well, your meld score should be between 6-8. Then at the 6 month mark you add the 24 to the 8 and Bamm-your meld is 30 to 32 and that gets you up there on the list. Like I said, pack your bags and be ready for the phone call. It happens quick! Im so glad to see your sticking with Swedish Seattle- What a great bunch of professional people. The whole transplant team is pulling for you. If you get Dr. P to do the surgery you lucked out. That guy is so good!! His side kick Dr. A-M is great, and a lot of fun. Your going to wizz through this transplant. RC

edit-- I forgot to mention the reason you get the 24 points after a 6 month wait is because of the HCC diagnosis.

-- Edited by robertsamx on Friday 29th of September 2017 07:30:33 AM

Canuck · Guru

Hey! Boxers ...

If it hadn't been for Observer posting here tonight with her, as usual, good helpful info - I would have not realized WHEN your ablation WAS - the key word (I think) is WAS!

I thought it was still "coming up"!, now that I read back, I think you already had it??

Oh my.

Set us straight. We need to hear from you, on all and any counts. C.

Observer · Guru

Well my dear, I am very glad you are accepted for transplant. You are a strong and brave warrior. And you deserve a second chance and a new liver.

I'll be thinking about you Thursday when you get the ablation.

You get some 'relaxants ' before you go in, and once they confirm its location with ultrasound you go to sleep preetty darn quickly. They put grounding pads on my thighs with a gel that was freezing cold...I think that bothered me more than anything.. nurse quickly piled warm blankets on me. After I actually had red stripes (painless) on my front of my thighs for a few months. But I was in and out of the hospital in mere hours and just was quiet for a few days...(no mucking out any stalls for you boxers!) biggrin

Alison

LamontCranston · Senior Member

Wow....you are one brave person. I'd be in full freak right about now...

You'll do well, and well....you know, be well!

Tig · Admin

That's positive news, Boxers! Anything like that is going to raise the anxiety level to all time highs, but you've seen the rates of success and RC's uplifting story and example. So, don't let it overwhelm you. Each day will be another step forward, keep that in the front of your mind at all times! We'll be going through this with you!

robertsamx · Guru

Good morning Debra-aka Boxers. Now you have a really good shot at it- the transplant that is.That's the best list in the world,thats also called the second chance list. None of us ever wanted to get on the list but that nasty HCV has a way of forcing some of us onto the list.That being said,I don't know how many times I have thought and said (Iwish I could turn back time and never had stuck that needle in my arm) but of course you cant go back and change things.Well ,once you get the transplant you have basically gone back in time and now have a disease free liver!! A second chance!!!! Dont be scared-Those microwave ablations are fairly painless, you will be asleep, you wake up on pain meds and lay flat on your back a few hours. There is no pain as you walk out the hospital front door.I have had a bunch of microwave ablations so I know what I'm talking about. I'm 60 almost 61 years old,and I breezed through the liver transplant. You will too!! I'm proud of my incision scar. I thought I would be bothered by it .This scar proves what warriors we are,what we have gone through,the battles along the way.You just fight-fight-fight . You would not have made the list if they diden't think you could do this.There will be more testing- chest X-RAY, CT's-Heart cath to check your heart.Lots of blood work. once you get through the phase two and make the list-hold on,get ready and pack your bags. The transplant team at Swedish are the best around. They had me out of ICU in 20 hours and out of the hospital in 4 days. That says something about the surgeons skills and the whole team that did the transplant.I like you have been so focused on killing the virus that all the procedures I had along the way kept my mind off the reality that I needed and was going to get a liver transplan. I'm 27 days out post transplant and things are going well. You will be here as well. I have started over-I'm one of the lucky one's,I'm the second chance kid- I have gone back in time and changed things.My new liver,my second chance,My new life. RC

wendyo · Guru

Oh that is great news Boxers. Forward progress!

boxers · Veteran Member

Canuck,on a personal note so much has been going on with this situation plus we adopted our granddaughter last month, everything is kind of surreal. She is 17 (lived with us since she was 12) and getting ready to attend classes for her pre-req. for nursing. Having to retire from my dream job because of this causes a lot of anger/sadness/depression...but I believe everything has a reason, so be it...but I plan to take this virus down!!! OK now you know my mental state...the laproscopic procedure is in segment 3, they are going to use microwave ablation. I have two tumors but this is the one they are concerned with since it has grown since March...now 2.1 cm. I should be transplant ready by 3/6/18 if a liver is available...that is when it will be "real" for me. I have two beautiful dogs, 3 horses and 1 cat....I will be crazy lonely without them. My husband, sister and granddaughter will be my human support.. :) I will probably drive everyone crazy as things progress but no one knows better than the warriors that have been fighting this battle. I will post again after the procedure. BTW I am a wimp with pain haha..I am worried about the procedure, I remember the pain of gallbladder removal and hernia repair, don't know what the heck I will do with a transplant incision.

-- Edited by boxers on Saturday 9th of September 2017 04:27:22 AM

Canuck · Guru

Oh my boxers! Here you go is right! My goodness, you sound so calm, strong and brave, jumping off the deep end like this. I am so glad you have the first steps firmly planned and layed out now, I heard you, how much you wanted this ablation (or whatever treatment they deemed best) to proceed as quickly as humanly possible - I am so glad you have made the pieces fall into place. Getting on the list is wonderful news. And Thurs will come so quick - to be rid of (annihilate this aberrant bit of unwelcome tissue into oblivion).

Do you have good support around you, for you, and so you have good care for doggies and such while you are in and out of hosp?

Observer too, has gone through a type of ablation, and was very relieved to blast the errant cells into non-existence. RC had multiple tumours, so multiple attempts at ablations were required.

Are you scared witless (I certainly hope not), or are you feeling justifiably angry and resolved to whip the shat out of that bad news blip on your liver? I sense you are of the wise, and steadfastedly type of gal who knows how to get things done, and will!

Do you have any details on the type of ablation (other than via laproscopy route), exact location of ablation site, or anything you want to share? You know we will be all ears.

I hope you are more excited than scared. All of us, what ever we can offer, are here for you. Please let us know how you are feeling about it all.

Fire away for specific questions and we will see what answers can be turned up for you. C.

boxers · Veteran Member

Here I go...accepted on transplant list, inactive (but the clock is ticking) until all the tests are completed. Will have a laproscopic ablation next Thursday. Using that approach due to tumor in an area of liver that sits on top of stomach. I have never been an idle person but would never have thought I would be making the journey of my life at this age. Thanks in advance for any tips and especially thanks to RC who has already given me pointers since I will be at same hospital. All of your successes give me hope and makes me a little braver.

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