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Forced change of transplant team (whine, whine, whine)

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Posted 4/27/2008 11:40 PM (GMT 0)
Hi everyone,
I hope that you'll excuse me while I vent. It feels like doing so will help strengthen my resolve -- and right now I feel unmotivated.
My new insurer won't work with my existing transplant teams at Yale / New Haven and Westchester Medical, which is a real slam to my confidence -- the loss of my team at Yale / New Haven especially. I've worked with them for the last few years, they know me and I know and trust them. Working with this knowledgeable and caring team made facing my mortality more tolerable. Living alone and being my own caregiver, and knowing that they were only 10 minutes away, made this doubly comforting. Now I must either go 2 1/2 hours to NYU Manhattan or 3 1/2 hours to Boston and start the pre-transplant process all over. But enough whining -- "Life ain't for sissies!"
So now it's time for resolve: I'll pour myself some Lactolose and make my 'Monday morning list'. Tomorrow I'll call the transplant center at NYU Manhattan and push for an early appointment. I'll call Blue Cross for some transportation money. I'll prep myself to meet my new transplant team. And I'll remind myself of how truly fortunate I am.
Based on what most others must face and deal with, I've got it easy: I've been accepted onto the transplant list; I'm managing my symptoms reasonably well and don't have to struggle with alcohol or substance issues; I have a forum family that knows what I'm going through and what I face (who listens when appropriate and kicks me in the rear when needed); I have family that on a moment's notice would fly cross-country to be with me (saving that for the 60 day post-transplant period); and friends who check on me and let me know where I stand based on Shelly's "Stages of Liver Disease" post.
So I apologize for whining and thank you for your patience. I hope that your trip down this road, either as a patient or a caregiver, becomes easier. Thanks for your sharing, your caring, and your involvement on the forum.
You are all in my thoughts and prayers.
Be well, John
Posted 4/27/2008 11:59 PM (GMT 0)
John, I am so sorry this has occured. Can I ask if you have requested a rehearing on their decision and if not what was their rationale after 2 years or better? I am appaulled!!!!!!!!!!!!!!!! Please ask your Dr at Yale to reccommend someone or preferably refer you to someone at the other hospital. The transplant Dr's are a close knit bunch and usually know each othet. It is possible that your current Dr will have a colleague at one of the two alternate hospitals. Pleaase John don't despair. Even though you are disheartened you will overcome this obstacle. You have come so far in this already and I just don't want you to be sad. Your spirit has been so uplifting and your resolve has carried you a long way so after a brief moment of sadness and anger get yourself back up there. You and I both know that your attitude has a lot to do with healing. We are here for you and want the best for you. hang in there!
Posted 4/28/2008 12:16 AM (GMT 0)
Hi Shelly,
Thanks for your support and suggestions. Yale / New Haven has not appealed Blue Cross' decision but Westchester has. I'm pushing! I meet with my Hep C doctor on the 9th and he is a Y/NH team member so I'll get a referral name at NYU.
Venting and whining really did help. I'm back to my mostly calm self, thinking positively and ready for the next obstacle. Like I said, I shouldn't be complaining after reading others' posts. I have a pretty sweet life.
Thanks for being here.
Be well, John
PS - Hi to JoAnn, Therese and June. I haven't touched base after your last round of posts. I hope that you are doing well. I've been reading your posts but can't always bring myself to comment. Hang in there.
Be well, John
Posted 4/28/2008 12:43 AM (GMT 0)
Sorry for your new obstacles. It does seem to make us feel guilty at times ranting, we don't have to look far to find someone who's doing better or worse than we are. But it sure does seem to help to vent. Don't be too hard on yourself.

I came to this forum trying to find info on what Hep B "borderline" results meant. The doctor doesn't seem too worried but I'm still waiting on my lest set of new tests to hear more. But Just hearing what everybody else deals with here, you guy's have my sympathies. My results will probably end up not amounting to anything although it's a little bit of a scary thing. But just reading some of the others posts and issues....this truly is a scary disease. You guys hang in there, keep on keepin on.
Posted 4/28/2008 3:25 AM (GMT 0)
John   I am so sorry but I think that really SUCKS!!  I don't have to ask how can the insurance company can do this because they can pretty much do what ever they want.  My question is WHY!  We have Blue Cross and we got a new Case Mgr.  He denied Jerry at first and then the Dr. at Vandy let him have it!  I can't remember what all they threatened him with but it worked and they accepted Jerry.  Thank God.  If Yale has done everything they can do and you still have to move then so be it!  You are stronger then you think.  At least I see it in your writing.  Here's your kick in the rear and I'm fairly certain you aint no sissy!!  Keep us posted.

JoAnn 

Posted 4/28/2008 5:22 AM (GMT 0)
Hi I'm_Jane_Doe,
Thanks for the note. I'm sorry to hear about the Hep B. I hope that you find that you have non-chronic Hep B. When the medical world found that they could treat Hep C, my doctor went through the litany of my Hep markers saying that in my case I had Hep A markers (I knew, from a childhood sewage infection), Hep B markers (surprise) and Hep C active infection (I knew previously as Non-A Non-B, non-treatable - guessing from a transfusion).
She explained that the Hep A and Hep B that I had in my system had run their course, leaving only markers and couldn't reinfect my system. I hope that is the case with you. The CDC states that only 6% of those infected after age 5 get chronic Hep B. I trust that you have been to the CDC page but if not, I suggest it: Hepatitis B Fact Sheet
Be well, John

Hi JoAnn,
Thanks for the vote of confidence. I'm not one to roll over quietly when others control my life or death -- so Blue Cross and I will be having many discussions.
It sounds as though you are doing well. I hope that is true. Jerry is fortunate to have you caring for him. I know that you know, but remember to take time for your spirit. Keep bright and strong!
Be well, John
Posted 4/28/2008 10:54 PM (GMT 0)

 "I'm not one to roll over quietly when others control my life or death"

Ahh, John, a man after my own heart.  Glad to hear it!  I'd fight the insurance co. on this.  Only accept it if it's clear you can't win. 

Go get 'em!  yeah

Hugs,

Connie

Posted 4/29/2008 1:18 AM (GMT 0)
John give them a what for with both barrels. Contact your insurance commissioner. See if he/she can intercede on your behalf. Or if it was legal for them to do it. It's below for CT.


Connecticut
Connecticut Department of Insurance
State Insurance Commissioners Office
P.O. Box 816
Hartford, CT 06142-0816
Main Phone: 1-860-297-3802
Fax: 1-860-566-7410

Good luck John.........take care...........
Posted 4/29/2008 5:20 AM (GMT 0)
Hi Connie and Pink Grandma,
Thanks for the encouragement and the info. It really helps -- but you already know that and that's why you're here.
I had every intention to make serious headway today but that didn't happen. It was an ascites 'purge' day so basically in bed shivering except for the 22 trips to the bathroom. The good things were that I weigh 7 pounds less this evening with a much smaller belly than I had this morning, and by 7:30 pm I was feeling normal again, which was great.
A friend successfully defended her doctorate thesis in psychology today so when she returned from NY a group of us went out to celebrate. Mexican restaurant with seltzer and lime for my celebratory toast.
I wish that I could figure out this ascites pattern. I swell over a week or two, then my body purges it all and starts all over again. I'm not complaining -- it's much better than being drained, but I don't understand the physics of it. I scares the bajeebers out of me and my doctor seems to skirt the question and my expectation of an explanation.

If anyone has a suggestion of reading material that might help explain the ascites pattern I experience, I would appreciate guidance.
Be well, John
Posted 4/29/2008 6:10 AM (GMT 0)

John, what do you mean by purge?  Do you vomit, have diarrhea, or what?  As far as the ascites, are you limiting your salt and drinking a lot of water?  Are you on any diuretics?  I'm still having some problems with swelling, though nothing like I had prior to cancer surgery.  I'm on Lasix and Aldactone.  I haven't been really stringent about the salt intake lately (beef bouillon in French onion soup is very salty, as is cheese), and I'm having a little mild ankle swelling, which my very observant surgeon noticed last Wed.  Can you give us a little more info?

Hugs,

Connie

Posted 4/29/2008 8:16 AM (GMT 0)
Hi John
That sucks about the insurance. I would fight the decision as if I were fighting for my life, which you are.
I am interested in the Ascites Purge also???? We go weekly to drain Bk of his ascites fluids, which lately has gone from a mere 3500 to an astonishing 9700 a week, he really should have been drained today but he is stubborn, wants to wait til his regular day. If there is a way to be able to keep from getting another hole poked in his belly I am all for it. He has a line on the fav side of his belly, where they have the most direct route, bypassing floating bowel, that I swear if he gets one more poke they it is going to create a vertical hernia all its own, with the exception of being held within the skin! nasty bruising and scars up and down his sides. I would love to hear of your remedy. He is on lasix and we do watch his salt intake, altho the dietician increased it to 2000 mg a day because he was losing weight so drastically, now he isnt losing weight, he is just filling up with ascites :(
Therese
Posted 4/29/2008 11:42 PM (GMT 0)
Hi Connie and Therese,
Regarding the 'purge', I really don't think that my body is supposed to operate like this and I find it quite unnerving.
As expected, over a period of a few to several days, the Ascites fills my abdominal cavity with fluid. I don't know by volume how much it is but it adds 3 to 7 pounds to my weight and 2 to 4 inches on my waist. Early on in the Ascites, I became Septic twice with doctors using Cipro as the antibiotic.
By purging I am referring to a day (usually 12 hours) of almost pure fluid diarrhea, occurring every 5 to 10 days. During that 12 hours, I am in the bathroom every 10 to 45 minutes and expelling what seems like a tremendous volume of yellow fluid with virtually no solids. (sorry for the details) At the end of the 'purge' day, my weight and waist are both back down and I am again able to comfortably bend to tie my shoes.
In my reading, I have found no normal physical method under which this can occur. Therefore, I am concerned that there are tears, leaks or whatever, allowing this tidal flow. That raises additional questions of what potential organ damage may be additionally occurring.
In answer to your diet and medication questions, I watch my sodium, I don't eat red meat, I eat a lot of fruits and a reasonable amount of vegetables, I eat 5 small meals a day and drink water enough water to stay well-hydrated (often with a big splash of real Pomegranate juice; Pom is my favorite; my folks have trees in AZ so I'm spoiled). I am on 30 to 40 ml of Lactolose twice daily (I was on Xifaxan with the same purge pattern), 20 mg Propranolol three times daily (for Varices) and I take 1/2 of a Benadryl before bed (2 to 6 am). I get some exercise working on my house (not enough).
So in closing, I don't have what I wish that I could give you: an un-intrusive draining method. I will see my Dr. on the 9th and press for an explanation because the purging is very unsettling to me. I will let you know what I find out.
Therese, you're a real gem of a caregiver -- keep up the good work, and take care of yourself and keep your spirit strong. As a self-caregiver, I can only imagine what it takes.
And Connie, having read so many of your posts, I have an idea of what you face daily. I can only hope to keep as strong and focussed as you as I deal with this disease and the transplant.
Be well, my thoughts and prayers are with you, John

PS - Everyone, again if you know of reading materials or references that might help me understand, I will be most appreciative.
Posted 4/29/2008 11:58 PM (GMT 0)
John, I was reading this post to my husband and asked him if he had ever gone thru that, and he said yes, the same exact thing! Hours and hours, the dr gave him hemmoroid cream to soothe the burning when he had the attacks but neer said the cause or anything else. How odd, since bowel movement is still a taboo subject, I bet there are others out there that have gone thru the same thing and maybe 1 of them have an answer or reason?
Therese
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