POZ Community Forums
Main Forums => Living With HIV => Topic started by: RevMC on January 30, 2008, 10:08:28 pm
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Blessings Everyone,
I was just told today by his home health nurse and his HIV doctor's nurse that Louie's in VERY bad shape. His hem count is 6.2, hem rate 19.4 and is need of a transfusion badly, up to 5 units of blood. The procrit and Iron suppliment's are not working. The lasix is not working on removing the excess water like it should.
They both told me that his body is shutting itself down and that the transfusion would only be a temporary bandaid. If he went for the transfusion he may end up in the hospital (which he doesn't want) so that they can try dialysis while doing the transfusion to help remove the excess fluids. He may not even be strong enough to handle that.
So his nurse is coming over tomorrow (thursday) early in the morning to help me to tell him the bad news and see what he wants to do.
How can I tell him that he was right, that he's dying and it's only a matter of time. OMG I can't even imagine how to approach that subject. Thank God his nurse offered to help me tell him. I've notified his family yesterday and told his sister who lives down the road about the news today. She'll help contact everyone in the family to let them know that the time is near.
Louie's been asking questions about what to expect and told me that when he can't fight no more that he'll go ahead and make sure that it's OK by me that he goes. I told him that he doesn't need my permission, that he already has it to go when it's time. He asked the nurse what to expect as well and she told him that when he sees god with his open arms that it'll be OK to go and that I'll be fine. She told him that there is no time there and though I may be here for who knows how many years, that he'll turn around when he gets there and there I'll be.
His sister in Indiana told him not to worry about me that I'm family no matter what the government says and that they'll always consider me his family and do what ever they can for me. He felt more comfortable after hearing that from her. He told me that he's not worried as much any more and that though he doesn't want to die that he feels it coming.
Please pray for his highest good that no matter what happens that if it's his time to go that it be quickly and painless.
I'll do my best to keep everyone informed as to what's going on.
Please pray for me too that I have the strength to continue taking care of him until he passes. Please pray that I have the strength, courage, health and anything else that I need.
In the 20 years that I've known that I've been HIV+ this is the 1'st time I've ever had to go through losing a lover/spouse/husband!
I'm scared!!!
I've been crying and letting it out, I feel like crying as I write this, without him knowing it and actually got a good nights sleep last night. I have my hydroxyzine on me at all times so if I start getting a panic attack that I can take one to help calm me down. Doc's nurse told me that if I need anything else to help me through this to let them know. I just don't want to be out of it or unable to drive.
It now appears that "Sale Of A Lifetime" POZ December 2003 http://www.poz.com/articles/172_752.shtml is now entering it's last chapter and coming to a close. It's been one hell of a journey, one that I would gladly do over again, and one that I do not have any regrets about. It's hard to believe, seeing the date of the issue, that it's been 4 long years, almost 5 now since he first got so very sick. Though we never did get to travel like we had hoped in the article, we have grown closer to each other, more than we had before. March 9, 2008 will be our 11'th anniversary. It would be nice to see him make it to that day, but it's not looking good.
I want to thank everyone in advance for all your support, help, advice and prayers.
May what ever god you believe in bless all of you, help you and comfort you during your trouble's, struggles and through this terrible disease.
I love all of you and, like I said, try to keep in touch as best as I can.
Thank you
Rev. Michael Carbone
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Oh Rev!
Matty the Damned is terribly saddened to hear this news and wants you to know he's thinking of you and Louie.
How can you tell him? Honey there's only one way to tell him. Straight up, gently and compassionately. Tell him it's OK to let go if he wants to.
:'(
MtD
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You, Louie, and family are in my thoughts and prayers!
Big Hugs
Teresa
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I will definitely keep you and Louie in my prayers.
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Breaks my heart to read this...I'll be praying for you both as I close my eyes tonight.
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Michael,
I am so sorry to hear this. I pray for strength for you both, especially you, and also courage....and most of all I wish you peace. I pray that God will be merciful with Louie, and his transition will be peaceful.
It's important for him to see you as "at ease" as you can possibly be. He will be worried more about you than about himself. When and if the time comes, let him know that it is alright for him to go, that you love him and you believe that everything will be o.k. Say that with conviction, and it will be so.
You both remain in my prayers.
with love,
Alan
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I am so sorry. I have you in my thoughts now always. Reading this tore me up, so I know what you are going through is terrible. I will be thinking of you and hoping and praying that both of you are alright.
Matt
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Rev
Your courage and love for Louis are an inspiration and a strength for you to draw on. Hold him, as much as the physical constraints of his care will let you, and name those who love him.
Respectfully
A
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I'm so very sorry to hear that Louie has taken such a sharp turn. I will also be praying for your peace and your strength.
Mum
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Rev, it is with sadness that I type this. When my mum was in her last days, she looked at me one time with very deep concern (over how I was going to handle her passing). I just looked her in the eyes and said "Mum, I'll be alright!" It wasn't long after that that she passed-peacefully.
I'm keeping you and Louie in my prayers at this most difficult time. :'(
Peace~
Betty
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Mike,
As I read through your post, I remembered all too well how scared and sad I was as my Randy was fading. It's a terrible subject to have to broach with someone, and I too had no idea what to really say. It doesn't matter what you say though, what does matter is that you're there with him. You've been taking good care of Louie, and he knows it, and that's all that matters.
This is the really tough part now, I know. I pray for strength and courage for you to get through what will come. I pray for peace and comfort for your Louie.
with love and sorrow,
mikie
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Know that you both are in my thoughts, sending you comfort, strength and peace.
Tim Hunter
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My prayers and thoughts are with you.
bry
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Michael,
I'm sending you and Louie all the prayers I can. I wish both of you the courage and wisdom to make whatever decisions you have to make, whenever you make them.
Love,
Henry
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Rev., you're an amazing, supportive man to Louie and I wish both of you fortitude in the coming hours and days.
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REv.
It's a sad day here at Aidsmeds. My heart goes out to you and Louie.
God bless.
robert
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Dearest Rev
You are both in my prayers today.
I agree with Matty, when the time comes just let Louie know that you love him and tell him it's OK for him to go, and I'm praying that you will find the strength to do this.
Hugs to you both
Jan :'(
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Praying for you both tonight.
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Dear Lovely Sweet Man,
It is ok to be scared. But you do know that both you and Louie are surrounded with love. You are indeed strong even though you feel weight of this is crushing you.
Whenever it is time, you will know what to do.
I send you much love tonight
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thoughts and prayers are with you.
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Michael, I just woke up to this sad update. Please know that both you and Louie are in my thoughts.
Debra xx
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Michael...I am so sorry to hear this. I know what a struggle this has been for the both of you.
I'm sending you strength and compassion.
(((HUGS)))
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You know I am with you.
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Dear Rev.
Your post moved me to tears this morning. I am praying for you & Louie.
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my thoughts and prayers are with you and Louie during this difficult time. i only hope to approach such a similar situation with as much grace and dignity as the two of you are. all my best.
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My thoughts and prayers are with the both of you-
sending my love,
Jen
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Michael,
I send to you and Louie all the strength and energy I can muster. Know that my thoughts are with you both and I am hugging you both.
Mark
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Dear Micheal,
I was talking with my mom about you and Louie last night. Being the mom she has become, after witnessing the experience of my loss (and boy she has come a long way), she sends you love and strength. Knowing her and the miracle of the internet, I have a feeling that most of Central Oregon is praying for you both right now.
Much love,
Sharkie
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Micheal,
Sending you both prayers and strength in this most difficult time. May God watch over you with open arms.
Rodney
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Micheal,
Thinking of you and Louie during this difficult time.
Dan J.
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My thoughts are with you guys Michael...
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I am thinking of you both. Courage in this difficult time.
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Michael and Loui,
Just hold his hand Michael.. you know he needs that right now.
SOunds like you have already told im you're fine with his leaving.
Of course, as humans, parting hurts.
I never had a chance to say goodbye. My lover just dropped dead.
So, know that we are all thinking of you and Loui here. I am lighting a candle right now in belgium and pray his passing will be smooth and painless.
It hurts to see you in agony Michael.. I am holding you both.
With love
Hermie
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Michael,
I'm so sorry.
My love, thoughts and prayers are with you and Louie.
Mark
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Sad day , no doubt
I hope your mutual love gives you the strength needed in these moments
Alex
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Michael,
You and Louie, will be in my daily thoughts...
Ray
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Reading this brings back many bitter-sweet memories.
I wish both of you the strength to get through this, I'll keep you both in my thoughts.
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Dear Michael~
I am so sorry to hear of this tonight. I lost my husband to AIDS in '96 when we were both very young. I, too, didn't want to talk about "it," about the inevitable. I was blessed in that my husband was in little pain and was able to communicate with me up until the day he passed. I remember sitting next to his bed that night, he was on morphine to keep him comfortable. I took his hand and I said, "You know, sweetie, its time for you to go now, and its OK. I'll be alright. You've worked hard enough here, and now God needs you."
I stayed positive, smiling as I spoke to my husband, not knowing if he could really understand me, but I somehow think he did. He peacefully passed about six hours later. I saw it as courageous, for him to leave this world on his own, and to go to a new place.
I also felt much relief for him, as I knew that he was OK. At last.
May God bless you and keep you strong during this very difficult time, Michael.
And may God bless Louie tonight.
~ Cindy
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Just be there for him, and know that we're all praying for both of you.
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Michael,
Im so sorry to hear this. Please know that you and Louie are in my thoughts and prayers.
Stacy
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Michael,
You both are in David's and my thoughts and prayers.
David
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I am sorry for this turn to the worse. You will be both in my thoughts.
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You are in my thoughts and prayers, Rev.
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you and louie are in my thoughts and god bless you and louie i will definately pray that if he has to go, he goes peacefully to sleep.
x
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Michael,
My thoughts and prayers are with you and Louie. Having gone through a similar situation this past November with a dear friend of 35 years, I know what you are facing. You are right to cry and let it out. Please know that Louie is joyful inside with the knowledge that you are there with him. I wish you and Louie the best.
Many blessings to you and Louie.
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TY everyone so much for the kind words and support.
The doctor still wants to do a transfusion for Louie. We were under the impression on Thursday that it was a good sign. I found out this morning that it's a comfort measure. They want to do 2-3 units to hopefully make him feel better and to give him more time. His enemia is critical right now and nothing else is helping. Another diaretic has been added to the mix.
The home health agency out here is a dual agency, part home health and another part that's hospice. We have Louie signed up now for the Hospice Support, which will help to keep him comfortable and offer extra's that home health can't provide. Since he said he does not want to stop the TPN then he will not go to the full hospice side. So they are doing just that, supporting what we need them for.
The hardest part is pretty much over, everyone in the family now knows. The hardest part was telling his 87 yr old mother. Louie's sister came up here to where we are at on the weekends so that the 3 of us can tell his mother. It was one heck of a balancing act to have hospice here signing him into the system and not letting her know exactly why. I didn't lie to her, just didn't tell her the whole truth. She asked why they were putting Louie into hospice and I told them for extra care that the home health nurse could not do in regards to his adema in his legs. Which is true.
Louie's 27 yr old neice, who they have always been very close, got an emergency flight out to see us. She's 5 months pregnant and was planning on coming back home from California in a few weeks so we can meet her new husband before the baby is born. She's closes to the point of not being able to fly. When she was told today of his situation, she found out a flight for Saturday, she should be here in the afternoon/early evening. We'll see her on Sunday.
They had always wanted Louie to walk her down the aisle when she got married, but because he was so sick in October, he wasn't able to do it. She even called us up right before walking down the aisle to tell us that she loved us both and understood why he couldn't be there.
I have the full backing of the entire family and his older brother said at least 5 times how much they appreciate everything I've done for Louie and how the family appreciates that I've been so helpful and kind to their mother. I told him to me she's my mother in law and even after Louie's gone, I'll always be here for her. His sister down here is even going to take over payments of the cell phone for awhile for us and had me increase my minutes so I didn't have to worry about taking a call. All nursing agencies and doctor's have my cell phone as well as the entire family so no matter where I'm at I can be reached.
I'm going to keep working even when Louie's unable to go back and forth from our home to his mothers, for awhile. When he get's to the point that the doctor says it's only a matter of days, then I'll stop working completely and spend all my time with him. Of course all this may change depending on his condition, especially when it comes to administering his morphine. Work is at least 1 hr away so it'll be hard to drive here to give him his meds and then to go back to work only to come back a while later.
We're just taking it all one day at a time.
BTW, Louie and I are going to have a committment ceremony so that in the eyes of god we'll be married. It's something the 2 of us have always wanted but never got around to doing it. I have a co-worker who is an ordained minister who will be dong the ceremony for us. We're going to pick out the rings this weekend and get all paperwork finalized by monday afternoon.
The hospice nurse told me the doctor's prognosis was 2 weeks, so we'll see how that changes after the transfusions. Louie's a fighter and is willing to go through the transfusions and the risks to stay here a bit longer.
Again, TY everyone for all your support and prayers. The "Sale of a Lifetime" story has officially entered it's final chapter.
I'll keep everyone updated as much as I can.
Love and Light,
Michael
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Michael, it really touches my heart that you two are going to have a commitment ceremony. What a man you are. And it's a great thing that you and Louie's family are so bonded. It will make the final transition and the aftermath just a little bit easier. Please keep us informed. My prayers are still with you and Louie.
Peace~
Betty
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holding you two in love and light
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guys, i said it before and i'll say it again - you both are the model of compassion and dignity. all my love and prayers...............
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Oh, sweet Michael and Louie! My heart is broken but at the same time so full to see the compassion that you two have not only from each other but from those around you. It's a comfort to know that you wont' be alone, Michael, but surrounded by Louie's family - your family. I'm glad you have hospice. They were a comfort to our dear friends when her hubby passed.
Our continued prayers are with you both.
Mum
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Michael,
Louie has my prayers. I will keep him in my thoughts throught my day and surround him in white light. I will also pray for you, so that you may have strength as well.
Peter
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Rev, the love and care you give Louie really warms all of our hearts here. Good luck with the commitment ceremony and it's so great that Louie's niece is able to be there with you both today.
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A commitment ceremony! How wonderful. Michael you are the best. Louie is very lucky to have you in his life.
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You are in my prayers.
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I am so overjoyed by everyone's words of support.
We have a ray of hope. We saw the doc yesterday (monday) and decided to do the transfusion. He said it may help jumpstart his body into producing red blood cells. If it doesn't then there is nothing that can be done. We're trying to get it done tomorrow (wednesday) and next tuesday, when they do his regular weekly labs, we'll know if it's working or not. If his counts drop from after the transfusion to next tuesday then there isn't anything else to be done. If his counts stay the same then we'll have to wait another week to make sure it's working. If his counts improve, then it worked.
We'll be going back to the doctor next thursday, valentine's day. At least we have some hope. Though we were told by the doctor that if louie didn't do the transfusion he would definitely not have long. He's critically low with his red blood counts.
All his family is on their way down this weekend just the same so it'll be busy. Doc decided for louie to still do morphine instead of increasing or changing to a new med. We've done a lot of crying and a lot of planning.
We're hoping for the best and stilll preparing for the worse.
TY everyone for your kind words of support and prayers, we truly appreciate it.
May what ever god you believe in bless all of you and hold you dearly.
Will let ya'll know more when we find out more.
Michael
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Michael, I wish the best for you & Louie. You will continue to be in my prayers. :-* :-*
Peace~
Betty
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Michael,
I hope the transfusion works and is the best thing for Louie.
You are both in my thoughts.
Mark
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Love and Light Michael, for you and for Louie.
((((((BIG HUGS))))))
Mark
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Love, and prayers to you Michael and Louie.
Louie and his family are so blessed by your grace and strength. You two are building wonderful memories for everyone that will grace and give you strength forever.
My prayers, you are a true inspiration to us all.
Bruce
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REVMC, my thoughts and prayers to you both!
And remember, to take a little time for you too!
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Rev - sending thoughts and prayers to you and Louie. JP
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I hope the transfusion works for him I was in the same situation years ago...and went through the process of transfusion several times when the Procrit didn't work .. after fourth time I got enough to get going again...been more than ten years now...the best of luck and many prayers to you both ..I hope your result is as good as mine...
Nick
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I hope the procedure works.
Alex
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Heres hoping and praying it works!
Keeping you both in my prayers!
Hugs
Teresa
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dear michael, im so sorry you and louie are having to go through this. i hope so much that the procedure works.
thinking of you both
all my love
xxxx
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May God bless you both, i am very sorry for the situation but i will pray for you both and hope for the best.
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My thoughts are with you guys Michael. Don't forget to take care of yourself too.
Hugs, Shaun
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Michael, I am so sorry to here about Louie. We only have eachother for "today." No guarantees of tomrrow.. I pray that Louie surprises us all.. Both of you are so true to eachother it takes my breath away..
Love to you both,
Eric
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You two have been on my mind. I send you light and love.
Sharkie
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Rev,
My thoughts and prayers are yours!
I have a life partner of 22 years, we are both HIV+, so even though I'm not in your shoes, I can empathize.
Richard
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Thanks for the update, Rev. I was wondering how things were going. I will be praying that the transfusion will work for Louie. And like everyone else is saying, take care of yourself...
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Well we did the transfusion on Wednesday, he only needed 2 units. Something must have kicked in from the week before because his hemaglobin and hem rate went up on it's own. Now with the 2 units of blood he's at 10.3 and 30 which is great, but doc said we still need to keep an eye on things since his creatine level also went up.
It took 2 days for him to get some energy so Friday was a good day, and Saturday was OK, he wore out very easily and today he's been asleep quite a bit. So not sure what's up. He got to see his 2 sisters and his brother.
I've been napping a lot as well, especially with all the driving, 1 1/2 hours each way to the airport from his mom's house, one more airport run to do tuesday morning. We're getting things all setup and finalized just in case.
As soon as I find out anything else I'll post.
TY everyone for the prayers and kind owrds of support, I truly appreciate it.
Rev. Michael
p.s. I am taking some time for me when ever I can, even if it's just for a short walk outside.
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As soon as I find out anything else I'll post.
p.s. I am taking some time for me when ever I can, even if it's just for a short walk outside.
Please do, and thank goodness.
:-*
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I'm glad that things are taking an upward swing, even if only a small one. I'm glad that Louie was able to see his family again. We'll keep you in our prayers.
Mum
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Glad to hear that Louie is doing a bit better and you are taking some time for yourself. I hope the visit from Louie's family made him feel a bit better. Keep us posted... :-*
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Michael, thanks for letting us know what is going on. I keep you and Louie in my prayers daily. :-*