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Feeling a bit fed up!

Djinnie
Djinnie Member Posts: 945

I had posted before about my liver enzymes being at the upper mark of level three. With it being highly toxic I had to stop the Votrient for a couple of weeks, recently starting at the lowest dose of 200mg. I was feeling hopeful; as my liver had improved slightly to accommodate the meds. I have just had my weekly blood work and unfortunately the toxicity is rising up again. I also had to see my cardiologist today because of my heart inflamation, it has improved somewhat,  but he is now concerned that there may be a connection between my heart issue and the problems with my liver. I have also very high Ferritine levels in my blood, I am not entirely sure what that means as yet. 

Sounds like I am in a bit of a pickle! Both specialists are having a discussion on Friday to determine the best way forward. I think I'll just book a trip to Italy, and leave them to sort it out while I'm gone! I could certainly do with a break from them and it!

Djinnie x

Comments

  • cjhawk38
    cjhawk38 Member Posts: 44
    Stay Strong

    Stay strong and enjoy yourself in Italy.  Hopefully when you return to France they will have a fix.  Just so you know I pray for your every night.

     

    Cindy

  • danbren2
    danbren2 Member Posts: 311
    Oh No!

    Djinnie,

         I just do not know what to say anymore, except that it is time for you to have good news! You are by far one of the strongest woman I have had the pleasure of knowing.  No matter what they throw at you your kindness, strength, and most important your sense of humor never seems to leave you. I am hoping that everything will work out well for you and everything gets under control.  Please keep the faith and know you are never alone!

                                   Praying for good things for you,

                                    Love, Brenda  

  • aamdsi
    aamdsi Member Posts: 284
    oh dear 8-(

    Am sorry for the "pickle". But love the trip to Italy idea!  Hopefully getting away will help you relax and when you get back - all will be taken care of!

    You are very strong so I have a good feeling you will come out on the "good" end of all this. 

    But until that time...Ciao!

  • APny
    APny Member Posts: 1,995
    aamdsi said:

    oh dear 8-(

    Am sorry for the "pickle". But love the trip to Italy idea!  Hopefully getting away will help you relax and when you get back - all will be taken care of!

    You are very strong so I have a good feeling you will come out on the "good" end of all this. 

    But until that time...Ciao!

    Love the Italy idea also. Go

    Love the Italy idea also. Go for it! Let them sort it out in the meantime and I'm sure they will. It's a good thing that they're so on top of your levels and monitoring everything so carefully.'You must be so frustrated and I can really understand that and I'm keeping my fingers crossed that they'll come to some resolution on dosage levels that are effective yet not toxic to you.

  • twinthings
    twinthings Member Posts: 409
    Damn girl, seems like you

    Damn girl, seems like you just cannot catch a break! 

    I hate to hear that your heart is inflamed.  If the inflamation is due to whatever ails your liver then they need to figure it out ASAP.  I am so glad you're in better hands now, could you imagine if those other bozos were still caring for you?  

    Just keep hanging in there.  With both of your specialists putting their heads together, they will likely come up with a game plan that will have your levels back in a comfortable range very soon.  Maybe then, the Votrient can do it's thang. 

    I say book that trip!  It will help get your mind off this pickle you're in. 

    Sending hugs and well wishes to you, my friend.

    S

  • Jan4you
    Jan4you Member Posts: 1,327
    Aww Djinnie, I am sorry this

    Aww Djinnie, I am sorry this has not improved for you.. yet! You deserve better. Glad you informed us so all together WE can join you in spirit in sending you healing thoughts and prayers.

    Its odd to say, but it was high liver enzymes that got me to an ultrasound, then got me to a CT which resulted in RCC and losing my kidney. Grateful in some way, I guess.

    May this "pause" result in better solutions for you!!

    Hugs to you my dear~

    Jan

  • foxhd
    foxhd Member Posts: 3,181
    Jan4you said:

    Aww Djinnie, I am sorry this

    Aww Djinnie, I am sorry this has not improved for you.. yet! You deserve better. Glad you informed us so all together WE can join you in spirit in sending you healing thoughts and prayers.

    Its odd to say, but it was high liver enzymes that got me to an ultrasound, then got me to a CT which resulted in RCC and losing my kidney. Grateful in some way, I guess.

    May this "pause" result in better solutions for you!!

    Hugs to you my dear~

    Jan

    I wish you

    all the best luck DJ. The demons must have you confused with someone else. When things turn your way we will have a celebration! You shouldn't be tested this many times.

  • a_oaklee
    a_oaklee Member Posts: 566
    Sharing info

    Your post reminded me of a friend of mine.  She has hemochromatosis.   Basically too much iron in her blood, and in her case it is thought to be a genetic condition.  She has monthly blood tests to check her ferritin levels.  If the results are high, they do phlebotomy and take a unit of blood from her.  She was told that high levels of iron will cause damage to her liver and heart.  She does not have cancer or take any medications.  (I believe our Ron has posted about getting phlebotomies too.  I'm not sure if it is related to iron or not.  Hope he sees your thread).  Best wishes Djinnie.

  • Jojo61
    Jojo61 Member Posts: 1,309
    Hang in there, Djinnie!

    This is a pickle, but I have a feeling that it will get sorted out. You are a strong and vibrant woman who could take on the world! So I think it is quite fitting to start in Italy. Immerse yourself in the beauty and the delicious food and wine that Italy has to offer. Thinking of you lots.

    Big hugs,

    Jojo

    XOXO

  • GSRon
    GSRon Member Posts: 1,303
    Jojo61 said:

    Hang in there, Djinnie!

    This is a pickle, but I have a feeling that it will get sorted out. You are a strong and vibrant woman who could take on the world! So I think it is quite fitting to start in Italy. Immerse yourself in the beauty and the delicious food and wine that Italy has to offer. Thinking of you lots.

    Big hugs,

    Jojo

    XOXO

    Oh Dj.. so sorry to hear

    Oh Dj.. so sorry to hear this...  So, do you have a "next" treatment plan..?  Hope so.. and hope it is a good one..!!!  No one can dare say that you did not try... you do get an "A" for effort...   Hang in there, we are all behind you....  "Hugs"..

     

    Ron

  • Suekub
    Suekub Member Posts: 137
    Bummer!

    Djinnie, so sorry to hear your latest news. Can't think of any constructive to say but my best wishes are sent to you. Italy sounds great, would love to join you! I have several friends heading to different parts of Europe over the next couple of months and would love to have joined them but this disease does it's very best to thwart any plans I would love to make.

    Good wishes to you, my friend

     Sue

     

  • Phredswife
    Phredswife Member Posts: 162
    You deserve a break!

    Not at all surprised you are frustrated. You are always so lovely and encouraging to everyone. You deserve a break in more ways than one. Hope you get to take a holiday. Italy sounds awesome. Praying for you.

    Hugs Melissa xox 

  • Skagway Jack
    Skagway Jack Member Posts: 224
    Borolo

    Djinnie,

    Have a glass, or a bottle of Borolo.  You have earned a break...make one for yourself and enjoy a top notch deep red wine with a bite to it.   Open the bottle the day before so it breathes properly, then enjoy every drop.  I love Italy and italians because they exude life and know how to celebrate it. 

     

    Jack

  • Djinnie
    Djinnie Member Posts: 945

    Borolo

    Djinnie,

    Have a glass, or a bottle of Borolo.  You have earned a break...make one for yourself and enjoy a top notch deep red wine with a bite to it.   Open the bottle the day before so it breathes properly, then enjoy every drop.  I love Italy and italians because they exude life and know how to celebrate it. 

     

    Jack

    Big Thanks!

     

    A big thanks folks for all of you support! I agree with you about those demons Fox, I hope they will tire before I do! this news has been a bit of a bummer, but as they say if there's a will there's a way, and I am nothing if not wilful! I am so ready for a reason to celebrate!

    a_oaklee thanks for the information about the ferritine, I am discussing that connection with my doctor later. I hope that's not the issue though, I have enough on my plate. When I think how much things can change in ones life in one year, it takes your breath away. One year ago I had a small T1b tumour situated right at the top of my kidney. It was supposedly a no brainer of a surgery, removed fully encapsulated with good clear margins. Little did I know at that time;there was a ten ton truck just around the corner with my name on it. Since then it's been like an on going train wreck. So I am hoping for something more simplistic as a causation in this case.

    Skagway my husband is with you on the Borolo, it's his favourite wine. I love it too but I am not allowed to drink with the Votrient. I can just breath it in! We are hoping to leave for Lake Como this weekend for a short break. I am just running it past all my medical friends before hand so they don't get twitchy. It will take my mind off my up and coming scans and all the rest of this toot! 

    Ronnie I have no idea what the game plan will be, I am sure once the Docs get their heads together they will come up with something! There has to be some wiggle room!

    Thanks again:)

     

    image

     

    Djinnie x

  • APny
    APny Member Posts: 1,995
    Djinnie said:

    Big Thanks!

     

    A big thanks folks for all of you support! I agree with you about those demons Fox, I hope they will tire before I do! this news has been a bit of a bummer, but as they say if there's a will there's a way, and I am nothing if not wilful! I am so ready for a reason to celebrate!

    a_oaklee thanks for the information about the ferritine, I am discussing that connection with my doctor later. I hope that's not the issue though, I have enough on my plate. When I think how much things can change in ones life in one year, it takes your breath away. One year ago I had a small T1b tumour situated right at the top of my kidney. It was supposedly a no brainer of a surgery, removed fully encapsulated with good clear margins. Little did I know at that time;there was a ten ton truck just around the corner with my name on it. Since then it's been like an on going train wreck. So I am hoping for something more simplistic as a causation in this case.

    Skagway my husband is with you on the Borolo, it's his favourite wine. I love it too but I am not allowed to drink with the Votrient. I can just breath it in! We are hoping to leave for Lake Como this weekend for a short break. I am just running it past all my medical friends before hand so they don't get twitchy. It will take my mind off my up and coming scans and all the rest of this toot! 

    Ronnie I have no idea what the game plan will be, I am sure once the Docs get their heads together they will come up with something! There has to be some wiggle room!

    Thanks again:)

     

    image

     

    Djinnie x

    I am so in awe of you in how

    I am so in awe of you in how you’re handling all that has been thrown at you in the past year. And still you manage to reach out to others and comfort them. Hope you get the green light to go to Lake Como, and with or without that Barolo, have a wonderful time!

  • brea588
    brea588 Member Posts: 240
    Djinnie said:

    Big Thanks!

     

    A big thanks folks for all of you support! I agree with you about those demons Fox, I hope they will tire before I do! this news has been a bit of a bummer, but as they say if there's a will there's a way, and I am nothing if not wilful! I am so ready for a reason to celebrate!

    a_oaklee thanks for the information about the ferritine, I am discussing that connection with my doctor later. I hope that's not the issue though, I have enough on my plate. When I think how much things can change in ones life in one year, it takes your breath away. One year ago I had a small T1b tumour situated right at the top of my kidney. It was supposedly a no brainer of a surgery, removed fully encapsulated with good clear margins. Little did I know at that time;there was a ten ton truck just around the corner with my name on it. Since then it's been like an on going train wreck. So I am hoping for something more simplistic as a causation in this case.

    Skagway my husband is with you on the Borolo, it's his favourite wine. I love it too but I am not allowed to drink with the Votrient. I can just breath it in! We are hoping to leave for Lake Como this weekend for a short break. I am just running it past all my medical friends before hand so they don't get twitchy. It will take my mind off my up and coming scans and all the rest of this toot! 

    Ronnie I have no idea what the game plan will be, I am sure once the Docs get their heads together they will come up with something! There has to be some wiggle room!

    Thanks again:)

     

    image

     

    Djinnie x

    Djinnie

    YOu go on that trip and get your mind off some of this stuff coming up.  Inhale the wine deeply!!!  I just want you to know that I pray for you every night and everyone on this forum.  THe very last thing before sleep is to pray for my friends and that they will get better.   Have fun.!!!!