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Frustrated

24

Comments

  • BluebirdOne
    BluebirdOne Member Posts: 476 **
    Cheese,

    Vent, vent, and then vent again. We are here for you to listen to your ventings! Sometimes the best way to get the frustration out is to just let it out. No shame there. 

    xxoo

    Denise 

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

  • Jairoldi
    Jairoldi Member Posts: 221
    edited April 2019 #24

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    Oh my!

    What a time you've been having. I'm glad you can be home for Easter. 

  • BluebirdOne
    BluebirdOne Member Posts: 476 **
    edited April 2019 #25

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    CQ

    I am so sorry that you have to endure this. These procedures that I have never heard of, but of course, someone needs them. I just had a nice dinner with my family which will be my Easter as we are moving this weekend, so take as much joy and happiness with being with family on Easter. I am thinking of you and knowing that you can do this and get through this.

    xxoo

    Denise 

  • Lulu7582
    Lulu7582 Member Posts: 112

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    Oh my

    So sorry to hear that CQ!! Gosh how awful! Pain is so debilitating! I do hope they managed to get it under control for you. All the best Monday. Will say a prayer that things go smoothly and for minimal pain. Glad you can at least be home with the family. Delegate all the work to them ok. xoxo

  • MAbound
    MAbound Member Posts: 1,156 **

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    Trooper

    Trust you to see the bright side in all of this! I really want this to finally get better for you...I don't think I can take it anymore, either! 

  • Armywife
    Armywife Member Posts: 449
    edited April 2019 #28

    !!!!!

    Well what a night!  My stent had migrated above the blockage and my doctor couldn’t get it out!  I was in so much pain last night he admitted me to the hospital for pain management. I’ve never been in so much pain in my life. I’m ok now but I’m scheduled for a nephrostomy on Monday. What fun!  4-6 Weeks of carrying a pee bag until I get blood sugar controlled. Just when you think it can’t get worse!  At least I’m home with my family for Easter

    Oh, Cheese!

    Can't tell you how sorry I am to read the original post and this update.  Thankful you got some pain relief, but dang, the rest of it is a nightmare!  Sending best wishes for a joyous Easter and better results onward.  Praying for you.

  • Kaleena
    Kaleena Member Posts: 2,059
    Oh my

    hello Cheese

    sorry you are going through this.  I too developed hydroureternephrosis of my left side.  I had ureter stent put in which needed to be replaced e wry three months.  I did this for over a year.  However I started not to feel good and my urologist did a ureter reimplantment.  I had a mass near the bladder from the brachytherapy.  I hope you are able to get the help you need

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    edited April 2019 #30
    Update

    So here is my sorted story!  I went in for my stent exchange and the doctor couldn’t get it out!  It had migrated up above the blockage and looped into a knot. He said he’d never seen anything like it. So after trying about 8 times, everything he knew, he had to leave it in. I woke up to the worst pain I’ve ever had in my life probably due to him manipulating the stent and worsening swelling of the kidney. The had to hospitalize me overnight for pain management. By the next day I was a little better and they couldn’t do surgery because I wasn’t off me Eliquis long enough, it was Good Friday and the sent me home. I had a nice Easter with my family then the pain started again. 

    One Percacet hit it but is often the case, the 2nd one didn’t have the same effect. I was scheduled to be in Hackensack (A 1.5 hour drive) at 7:15 am for surgery prep. When I met the interventional radiologist he seemed to have no idea the potential severity of the stent situation and the knot ( don’t they talk to each other or read the notes?). Unfortunately my world renowned surgeon went on vacation but my husband and I remembered very clearly what he said and he used the word knot!

    He finally came around to our way of thinking (WTF) and realized the situation was much more serious than he anticipated. Now my challenge was the anesthesiologis. I was concerned about laying on my belly for the surgery considering my terrible reflux which I have even and especially when I have not eaten. The wouldn’t give me a general in which they always protect my airway. We compromised on she giving me anti nausea drugs which seemed to work. I was semi awake which didn’t thrill me and I did feel some pain but not terrible. 

    So I went home after 6 hours, stent gone and a nephrostomy in my right kidney. Pain much improved but a bag to empty hanging on my right thigh. I had to fight like hell to get my home health care which I was told had been all arranged. This hospital is great at passing the buck. So I finally got them to arrange it. Nobody told me how to care for this thing despite the fact I have a tube going into my kidney draining into a bag!!!!!   I knew I needed home health to teach me basic life skills. This is ridicules!

    I’ve got until June 5 to get my blood sugar in order for corrective surgery on the ureter. Meanwhile a trip to MI to get my mother’s (who’s in assisted living ) finances in hand. Whew!

    Enough whining!  Onward and upward. Thanks for listening to me. But darlings, pain makes all the difference doesn’t it?  We can tolerate almost anything if it doesn’t involve pain. 

  • zsazsa1
    zsazsa1 Member Posts: 547
    edited April 2019 #31
    Wow.  CQ, you are incredible,

    Wow.  CQ, you are incredible, enduring all this.  And now you're gonna travel to MI to deal with mom's finances?  Hope it's quick and easy.

  • MoeKay
    MoeKay Member Posts: 354 **
    What an Ordeal

    CQ, I'm so sorry to learn about your ordeal, but I'm very happy that your pain is much improved.  You couldn't make this stuff up if you tried!  Rest and take things as slow as you possibly can.  And you're not whining at all, just reporting the facts!!

  • MAbound
    MAbound Member Posts: 1,156 **
    It's absolutely stunning to

    It's absolutely stunning to me what you've had to go through when you are one of our most fearless when it comes to standing up for getting what you need for your care. It makes me nuts that any of us have to work so hard for care that we should be able to trust in. One can never really be even a little bit passive or trusting when it comes to the health care system even at our most vulnerable times. I think most of us can and do put ourselves in your shoes and feel like this can't keep going on like this any more than you do. You are so right that pain makes all the difference! It upsets us all when we hear what you've been dealing with in spite of your best efforts. I'm sure there's a lot of us who would like to give some of your doctors a piece of our minds on your behalf. "Wow!" just keeps resonating in my head!

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    edited April 2019 #34
    My PCP

    Like Eldri, my PCP has often time saved my life. Not only is she an excellent doctor but a beloved friend and lives across the street from me. I can contact her at any time of the day or night and her husband is also a doctor and her partner. I hit the jackpot when God put her in my life. She also has an excellent MA who will go to the moon and back for her patients. My advice is to find a good PCP as your go to person and hold tight. You may not be as lucky as me but he/she can be your lifesaver. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Cheese, thanks for updating

    Cheese, thanks for updating us. So glad you are out of pain and I hope you are able to get the needed surgery in June. Have a safe trip and try to get some rest along the way. You need to be kind to yourself.

    Love and Hugs,

    Cindi

  • SF73
    SF73 Member Posts: 316 **
    Cheese,

    Cheese,

    I cannot believe how much pain you had to endure with this stent exchange. So glad to hear you advocated for yourself effectively. It is so scary to hear miscommunication between teams. I am sure it happens a lot. Happy that you are pain free now. Wishing you all the luck for your June surgery. 

  • Lulu7582
    Lulu7582 Member Posts: 112

    My PCP

    Like Eldri, my PCP has often time saved my life. Not only is she an excellent doctor but a beloved friend and lives across the street from me. I can contact her at any time of the day or night and her husband is also a doctor and her partner. I hit the jackpot when God put her in my life. She also has an excellent MA who will go to the moon and back for her patients. My advice is to find a good PCP as your go to person and hold tight. You may not be as lucky as me but he/she can be your lifesaver. 

    Hugs

    CQ sending you lots of hugs! Glad you have a good PCP who will listen and help. Yes pain is so debilitating and makes it so hard to be upbeat and positive. When pain is tolerable it makes all the difference. Hope your home health nurse is helping out and yes that is ridiculous to send you home and expect you to know what to do. 

    All the best with the trip to MI, hope everything goes smoothly for you. Will say some prayers for peace, safe travel and no pain!! xoxoxo

  • Wannabeatit
    Wannabeatit Member Posts: 98
    Wow! We all look up to you!

    Wow! We all look up to you! You need this done with!

     

  • Kaleena
    Kaleena Member Posts: 2,059
    Geesh!

    oh chrese!  So sorry you are going through this.  Please know you are in my thoughts and prayers.  I ended up with an ileostomy last year for several months. And finally had it removed.  I am sorry I can’t write more but I broke my right humorous bone which required surgery and I am right handed so I can’t type much.  

     

    Thinking if you b hugs!

     

    kathy

  • Soup52
    Soup52 Member Posts: 905
    Oh Cheese I’m soooo sorry!

    Oh Cheese I’m soooo sorry! This is all too much!! I agree withEldri! It’s always something!! I’m praying they can solve all of this for you!

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **

    Reading your latest post made me so angry and yet so sad about what you're having to endure! D*mn them all!! I wish for one hour they could be in your shoes. But, you're right about finding one doctor who was in your corner that you could trust, makes all the difference in the world. I am so sorry, my friend, that you are going through this! Your stamina is unbelievable, as is your courage.

    Love,

    Eldri