Author Topic: Update: Doctor reccomended hospice yesterday (Read 27051 times)

Christine · « **on:** May 31, 2007, 04:00:32 pm »

I don't know what more to say right now. My hands are shaking and it is hard to type. I just wanted to let you all know things are not going well. I have decisions that need to be made.

i thought death would be different. More decisive, peaceful. But I find that it is not for me. The numbers, the lab results say one thing, my body screams enough, but my heart does not want to leave.

I don't know what to do. I am so tired of being sick, I've lost almost 20lbs in the past few months. A few months ago the doctor talked to me about doing things I have always wanted to do...do it now, don't wait. I wanted to see Disney World. I know it is silly, but I wanted to be a little girl again, and not be sick, and feel like magic and dreams are real. My husband made it happen. It was wonderful. I wasn't sick that week.

But it has gotten worse since then, more bad than good days. I didn't know if I should tell all of you. I don't want anyone to worry or be fearful.

I don't know what is the right thing to do. I just want it go away.

Christine

June 1, 07
Hi Everyone,
You are all so amazing, I can't really put it into words. I can feel, in my heart, your thoughts and the power of those thoughts. It is extraordinary. I am so blessed to have known all of you, experienced your joys and laughter. I am a better person for all of you.

I had the amazing joy of talking to our Miss Melia today on the phone. She is wonderful, kind, empowered, funny...Hearing her voice, and talking to her has helped me gain more insight into the past few days.

I am not ready to give up. My heart is not ready. My body may fail me, and I imagine that is what will happen, but I am not going to go gentle into the good night. I might be in denial about what will happen over the next few months, and maybe that is a way of coping right now, and I think for now that is okay.

I called the doctor, and told them I am still going to take my hiv meds, and for now use pain meds as needed at home. When hospice starts, I want, at least for now, to remain at home.

What my body does, it does, but hiv is not taking my heart or my spirit. It is going to have to fight me for those, and it better be prepared, because I can be a real bitch when I want to be.

Melia, thank you again. You were my angel today.

Christine

Dachshund · « **Reply #1 on:** May 31, 2007, 04:06:37 pm »

I'm just so sorry Christine. I'm glad you told us...I'm just so sorry.

Hal

Carolann · « **Reply #2 on:** May 31, 2007, 04:07:01 pm »

Christine,

My heart goes out to you. I am so sorry that you are going through this pain. My thoughts are with you.

Carol

chemistry001 · « **Reply #3 on:** May 31, 2007, 04:17:37 pm »

Christine

You are in my thoughts right now, I'm glad you are able to share what is happening in your life at this what must seem an impossible phase. I hope you are able to take some comfort in the messages from people on here.
God bless you

Paul xXx

frenchpat · « **Reply #4 on:** May 31, 2007, 04:31:40 pm »

Christine,

your post does not make me worried or afraid, it makes me think. Thank you for sharing this.
There is a lot of you in my thoughts right now.

Pat

scud44 · « **Reply #5 on:** May 31, 2007, 04:37:09 pm »

Christine, Words cannot express my feelings at this moment - I know this must be a hard time for you - please keep smiling and remember the good times in your life - they are the important times

Matty the Damned · « **Reply #6 on:** May 31, 2007, 04:45:31 pm »

Ah Christine,

Matty the Damned won't lie to you, this news saddens him deeply. He wants you to know he loves you dearly and hopes that you find the peace you want and deserve.

MtD

asaint · « **Reply #7 on:** May 31, 2007, 05:03:00 pm »

Hi Christine, I'm not one to cry but I must admit my eyes are welling up. I wish I could do or say something that would make all of this disappear for you. but unfortunately all I can do is say a pray and hope things will get better for you.
Bob

Nadine · « **Reply #8 on:** May 31, 2007, 05:21:32 pm »

Christine,

I'm finding it really hard to come up with the words that I really want to say. Just know that you are in my thoughts and prayers always.

((((((((((HUGS)))))))))))
Nadine

anniebc · « **Reply #9 on:** May 31, 2007, 05:24:17 pm »

Dearest Christine

I hate this so much, I hate the suffering this brings you, I hate the fact that you are put in a position where decisions like this have to be made..and I hate the fact I don't know what to say, my tears are your tears...I can only repeat what Matty has said, I wish you peace. love and an end to your suffering.

In love and sadness
Jan

cmhjeff · « **Reply #10 on:** May 31, 2007, 05:28:33 pm »

Christine - This was painful to read only because it took me to a place I was 2 years ago. Only difference is that I wanted a hospice care facility to die but my doctor refused. I remember one minute praying for my angel to take me from all this and the next praying to stay cause I wasn't ready. Don't fight your feelings and allow yourself to be angry or cry but hold on to hope cause hope is the best medicine out there.

I'll be thinking about you and sending positive energy your way!

Hugs
Jeff

blondbeauty · « **Reply #11 on:** May 31, 2007, 05:37:37 pm »

Dear Christine,
It is very hard for me to accept there is no way of making you get better. I still remember the good results you achieved with one of the new meds for a short time.
I might be silly or childish but I can´t accept nothing can be done. I heve been reading these days in a coference held here in Valencia even the most resistant starins of HIV will be controlled with already available meds. Hold on. I want you to post a picture of your next birthday.

sweetasmeli · « **Reply #12 on:** May 31, 2007, 05:40:23 pm »

Dear sweet Christine

My heart goes out to you and Chris. You are both in my thoughts. I've sent you a pm.

Melia xxx

blondbeauty · « **Reply #13 on:** May 31, 2007, 05:45:23 pm »

http://www.diariomedico.com/edicion/diario_medico/especialidades/infecciosasxsida/es/desarrollo/997111.html
Tranlation:
Infecciosas/Sida Inhibiting New publicity of the protease indicated for the simplification of the therapy During the course of day VIH, the surrounded virus that continues resisting, celebrated in Valencia, has appeared to darunavir, TMC114, an inhibitor of the protease commercialized by the Jansen-Cilag laboratory under the name of Prezista that presents/displays a good hepático profile, which makes of him a safe option for the treatment of the VIH in patients as much become infected as not become infected. Juan White Carlos. Valencia 23/05/2007 Traditionally one of the negative aspects has been the resistance of the immunological system to the combination of these drugs, is this Brown Santiago, of the Hospital Ramon and Cajal, whereas to darunavir it can be combined with any other commercialized antirretroviral and the three new ones: etravirina, retrovirol and to raltegravir ". Prezista has been the first antiviral agent of the protease in receiving the approval accelerated and conditional (with IIb phase) in ten years. In this sense, Jose Mª Gatell, the Clinical Hospital of Barcelona, has assured that "to darunavir it is an inhibitor of the powerful protease, tolerated well, with high genetic barrier and very few resistance crossed to other drugs of his same group". One of the objectives of Jansen-Cilag is to facilitate the universal access to forward edge of treatment; for it it has signed a licensing agreement of collaboration with Reel to register and to distribute Prezista without payment of rights of property in the sub-Sahara countries. Vaccines On the other hand, an equipment formed by members of the Hospital Dog Ruti and the Clinical one of Barcelona, under the name of Hivacat, is working in a therapeutic vaccine that uses analogous dendítricas cells of the own patient. The results of this study, commanded by Teresa Gallart, will be presented/displayed in a year. BLOCKADE OF ARN VIRAL the group of the university professor Luis Carrasco, of the Center of Biologi'a Molecular Severo Ochoa (UAM-CSIC), publishes number of Journal in the last of Virology a study in which it is explained that the structure of the messenger ARN (ARNm) does not confer traducibilidad when the intracellular surroundings have been modified by the viral infection. Thus, when virales ARN in cells already infected were introduced additionally saw that these were incapable to produce proteins in spite of having the same structure that those that then was being translated, derived from the viral replication.
http://actualidad.terra.es/sociedad/articulo/expertos_vih_destacan_nuevos_farmacos_1582261.htm
Transalation:
Experts emphasize new drugs will allow to control resistant strains. VIH Specialist in the treatment against AIDS emphasized today that ' soon will appear new drugs against this disease, of which the past year 1,586 cases in Spain were diagnosed, that will allow ' to control the virus well, even the more resistant starins'. The present evolution of the antirretroviral treatment in the last 25 years, alternatives and of future, the present coinfection of VIH and Hepatitis C and perspective of the affected ones, were some of the subjects treated in meeting ' VIH, the surrounded virus that still resists", in Valencia, in which they participated expert and representing in affected. The commander of the Unit of Infectious Diseases of the General Hospital of Valencia, Enrique Ortega, declared to EFE that while before the VIH ' was a synonymous one of death and development of AIDS the new treatments ' have made it a cronich disease. ' But sometimes they appear resistant strains to these drugs, by many factors like the capacity of the virus, the absorption deficit or the carelessness in the taking of the treatment, as it happens in other diseases cronich', indicated. Ortega indicated that they are appearing new drugs with which those resistance will be able to be surpassed. ' We have drugs for the old morning calls of the virus and new medicines for new morning calls of the virus, and in the next years we are going to even control well the virus in the stocks resistentes', affirmed. One of these drugs is to darunavir, that reduces of significant form the presence of the virus of human immunodeficiency (VIH) in the AIDS patients which they do not respond to the conventional treatments. On the other hand, doctor Brown Santiago, of the Hospital Ramon and Cajal of Madrid, indicated that great part of the problems related to the indirect effect of the first antirretrovirales treatments, the development of resistance and the lack of fulfillment pro the difficulty that they had in his taking ' has seen superados' clearly. ' At the moment less than the ten percent of the patients submissive treatment they present/display virológico failure, that is to say, viral load detectablé, indicated Colored person, who emphasized the ' excellent profile of power and toleranciá of darunavir that, according to he said, ' allows to even treat the patients who fail or do not respond to others terapias'. Ortega emphasized that more than half of the patients with VIH also it is affected of Hepatitis C, and in them it progresses more quickly to hepática cirrhosis that in the general population, which supposes that the chronic hepático failure is one of the first causes of death in the affected ones by VIH. In the meeting also Jose Fuster, ex- president of CESIDA, State Coordinator of the VIH-SIDA participated to Maria, that emphasized that the advance that has taken place in the treatment of the disease ' it hits a social scene frontally where it continues being a hostile atmosphere that makes difficult the design of a project of life for afectados'. To improve the prevention strategies, to diminish the still high number of delayed diagnoses in the VIH, to imply to the Social Security in the boarding of certain associated indirect effect to the antirretroviral treatment, specially the one of lipodistrofia, is some of the aspects that still the patients demand. In opinion of Fuster, the estigmatización and attitudes discriminatorias that still occurs in the labor scope, as well as the necessity to regulate with justice the qualifications of minusvalía, is some subjects that ' still must be mejorados'.

Christine · « **Reply #14 on:** May 31, 2007, 06:21:34 pm »

Thank you everyone. I would be lost without all of you.

Juan-thank you for the info on the study. i am on prezista, and an integrase inhibitor. it worked for about 2 months, then the vl started going up again. I seem to have a very nasty resistant strain. I have some pictures from Disney i will post. I promised Melia and Catman I would send them some too.

Jeff, Jan, Nadine, Bob- Thank you.

Matty- Don't be sad. I need you to make me laugh, and smile.

Scud44, Pat, Paul, Carol- Thank you also for your kind words.

Hal- I am sad to. I foolishly thought I was prepared for all this.

i love all of you too.
Christine

Iggy · « **Reply #15 on:** May 31, 2007, 06:24:39 pm »

Christine,

I'm just sitting here praying for the right words....and then I realize that's a wasted prayer cause it's not about words right now. God I don't know what to say ....I just hate this so much...so very much.

I just wish there was something I could do.

Mouse · « **Reply #16 on:** May 31, 2007, 06:46:59 pm »

Everyone has already said everything I'd like to. I just want you to know I'm thinking about you and if you ever feel like talking or anything I'm always around.

And al;skfjldkj Disney! I used to watch the vacation videos about Disney when I was little, it was so pathetic. I want to see pictures too. Just not any of Goofy because he scares me. :[ I don't know why.

gemini20 · « **Reply #17 on:** May 31, 2007, 07:19:21 pm »

Dear Christine,

This must have been a very hard thread to start and I hope you will gain some strength and support from everyone's thoughts and comments.

I cannot fully appreciate the position you find yourself in but I have given plenty of thought to ‘end of life’ issues over the years. I don't think there is any ‘right thing’ to do in this situation but perhaps you can find something that feels most comfortable for you.

If the bad days are outweighing the good and your ‘body screams enough’ then would you consider stopping all the meds and allowing whatever time you have left to be on your terms?

I know that for me it will always be the quality of my life which is the overriding factor in any decision I have to make. When the simple pleasures of life are taken away and all you have is sickness and pain I know I would find it very hard to struggle on. And yet human instinct probably doesn't allow oneself to just ‘let go’ and let nature runs its course.

It was good to read that you fulfilled one of your dreams, maybe there are others still to be had which is why your heart does not want to leave just yet.

I hope you find the strength and guidance you need to make your decisions. My thoughts and prayers are with you and your family.

Emma

AlanBama · « **Reply #18 on:** May 31, 2007, 07:26:30 pm »

My dear Christine,

I am so sorry. I'm so thankful you went on your trip to Disneyworld! I just want to say that I love you, I wish you peace, and never give up hope. You are always in my prayers.

Alan

Cliff · « **Reply #19 on:** May 31, 2007, 07:54:36 pm »

Christine,

I'm sorry for these turn of events. I wish you strength and peace with whatever decision you make.

carousel · « **Reply #20 on:** May 31, 2007, 08:38:24 pm »

Christine

I can only imagine what you going through.

Knowing that there are so many who are willing you the very best must be a comfort.

Having a bit of professional care at this time can't be bad.

Best wishes, Charles xx

Life · « **Reply #21 on:** May 31, 2007, 08:41:18 pm »

I wana hear about Disney World!! I think the next step we all eventually will take will be like Walt's dream. But, I do not think we nor I or especially you Christine should rush to this.... It is going to come... It is going to come when we either allow it, or IT just says - now is the time... Christine, some of us are selfish and would hate to feel and deal with you not being amongst us... That is enough sometimes to find a way to make it another day. However, when there are no options, no roads that have not been traveled, then I think it is ok to say goodbye. I do not like goodbye's and I do not believe in them... Cuz for me, we will all be in a better place, together without the virus. Christine, I like Juan hope that your doctors can make you better if not well. The power of prayer sometimes is all I know... You have mine.....

I can't wait to see your pictures, that is a place I have never seen...

Love,

Eric

RapidRod · « **Reply #22 on:** May 31, 2007, 08:51:24 pm »

Christine, my thoughts are with you.

Teresa · « **Reply #23 on:** May 31, 2007, 09:18:05 pm »

Dear Christine,

It breaks my heart to read that you are suffering. You have helped me so much since I first came to these forums. I wish there was something I could do or say to take away your pain. I hate that this is happening to you!

You and your family are in my thoughts and prayers.

Much Love
Teresa

BT65 · « **Reply #24 on:** May 31, 2007, 09:54:17 pm »

Christine:
I do not know you, but I feel you. This made my eyes well up BIG TIME. Please know another woman cares about what happens to you. I wish you the peace you need and the comfort you deserve.
Betty

xtente · « **Reply #25 on:** May 31, 2007, 09:58:24 pm »

I have been positive for 8 years and I didnt think people died of HIV anymore. How long have you been positive.

I will pray for you

please write back

Even when there seems like there is no hope left...there is hope

Denver Toad · « **Reply #26 on:** May 31, 2007, 10:07:51 pm »

Christine, we don't know each other but I'm touched and blessed by your post. No matter where the road leads, I hope you find peace. I don't have deep words, I'm overwhelmed and touched that you shared with us where you are in this journey called life. Follow your heart, be all you dare with what you have. My prayers, my tears, my heart goes out to you... Todd

Miss Philicia · « **Reply #27 on:** May 31, 2007, 10:12:45 pm »

Christine, I'm so saddened to read this but wish only for the pain to be lessened. I've always followed your medical postings and know of you particularly virulent strain even with all of the latest, best treatments you've tried. I can only imagine what you have personally been through. My thoughts go out to you and your husband.

appleboy · « **Reply #28 on:** May 31, 2007, 10:33:08 pm »

Christine,
I am thinking of you! I pray you find the peace you are looking for. Please do post the pics of Disney as I have never been and love looking at other pics from going there. I am sending you a huge hug through the world wide web.

AppleBoy

joyluckclub · « **Reply #29 on:** May 31, 2007, 10:55:44 pm »

Christine,

My thoughts are with you.

Blixer · « **Reply #30 on:** May 31, 2007, 11:58:18 pm »

Christine,
I echo what others have said here. My thoughts are with you. There are lots of people here to help provide some emotional support. Reach out when you need to.

Queen Tokelove · « **Reply #31 on:** June 01, 2007, 12:04:35 am »

Christine~~

Damn, I really hate that things have come to this. Know that you are in my thoughts and prayers. Looking forward to seeing the pics from Disney....*eyes wells with tears*

aztecan · « **Reply #32 on:** June 01, 2007, 12:58:44 am »

Christine,

My heart is heavy after reading what is happening. I hope you find the peace you seek and know you will be in my thoughts and heart.

With love,

HUGS,

Mark

SASA39 · « **Reply #33 on:** June 01, 2007, 02:40:32 am »

Christine , do no what to say............
First time Atlantis and now this........
One of my wishes is/was to take my little girls to an Euro Disney in Paris.
I`m not sure anymore that i could do that.........
But I`m glad for you ,yes sometimes a person is eager to went back to his childhood, ....................and I glad that you have managed to do that.
God bless you , I really love you as a person

Al
And I`m really proud to share this salt of earth with you.........

Dragonette · « **Reply #34 on:** June 01, 2007, 03:54:54 am »

Dear Christine,

Your post saddened and touched me deeply.

I am crying for you & I pray that you find peace.

Love,

JohnOso · « **Reply #35 on:** June 01, 2007, 05:27:42 am »

Christine,

As sad as I am in reading your words, I am glad that you were able to find some measure of happiness with your trip.

I am keeping you in my thoughts.

John

Dachshund · « **Reply #36 on:** June 01, 2007, 07:13:30 am »

Christine,

Another day, another chance to say we love you.

Hal

Peter6836 · « **Reply #37 on:** June 01, 2007, 07:18:46 am »

Christine,
My heart is with you, God Bless You. I will think of you and send you Love.
Peter

RAB · « **Reply #38 on:** June 01, 2007, 08:15:42 am »

Christine

I can not add anything beyond what others have already posted.

I am truly sorry for what you are facing.

RAB

bear60 · « **Reply #39 on:** June 01, 2007, 08:53:26 am »

My thoughts are with you, Christine.

milker · « **Reply #40 on:** June 01, 2007, 09:04:14 am »

Dear Christine,

I am too very sorry to hear those news. My thoughts are with you.

Milker.

Trixie · « **Reply #41 on:** June 01, 2007, 09:05:15 am »

Dear Christine:

I will carry you in my heart.... HUGS and good thoughts.

May you find peace.

Trixie

dad1216 · « **Reply #42 on:** June 01, 2007, 10:18:44 am »

Dear Christine,

My thoughts are with you...

Bob

tnboy · « **Reply #43 on:** June 01, 2007, 10:48:32 am »

Dearest Christine,

I want to join the others in saying I am very saddened by this news. I wish you the best medical care possible and lots of Love.

You are in my Thoughts and Prayers,
Mike

JPinLA · « **Reply #44 on:** June 01, 2007, 10:50:40 am »

Christine -

We do not know eachother but from this post and others you are a brave and strong woman and I hope you find comfort and peace soon and that you are surrounded by love.

Sending my own love -

Jason

blondbeauty · « **Reply #45 on:** June 01, 2007, 12:13:59 pm »

I have been thinking of you last night. You "just" need a 3 new drug combination and not a single new drug. I am sure your Dr. will find the way to make you healthy again. I trust science and research has something for you. This year several new meds will become available. Prezista has worked for a while but there are many more.
Like in Disney´s Magic Kingdom I believe happy days will return to your life.

Bucko · « **Reply #46 on:** June 01, 2007, 01:53:47 pm »

Christine-

I am humbled by your grace and honored to have met you.

Love,
Brent

dixieman · « **Reply #47 on:** June 01, 2007, 02:03:58 pm »

Christine, I am at a lost for words.... thinking of you... John

StrongGuy · « **Reply #48 on:** June 01, 2007, 02:44:23 pm »

My heartfelt thoughts are with you and, know, we are all in debt to you for your journey as a fighter against this disease.

englishgirl · « **Reply #49 on:** June 01, 2007, 03:47:52 pm »

i dont know what to add, i can only echo the words of all the others who have posted their love and best wishes here. sending you strong thoughts.
please keep us updated
with love xxxx

Forums Index

Welcome

Author Topic: Update: Doctor reccomended hospice yesterday (Read 27051 times)