Wednesday, January 17, 2018

Another surgery this Friday

I met with the vascular surgeon yesterday and things are moving quickly.  I've got a revision surgery scheduled for this Friday morning.  The plan is still the same.  I'm creating 2 new buttonholes because the angles I had the needles in before seemed to be causing a lot of machine alarms during dialysis, so I just decided to create new ones all around.  I did it last night and my arterial numbers were a lot better.  We also agreed to run at a blood flow rate of 400ml/min, instead of my prescribed 450ml/min, and that makes a difference.

I'm overall feeling better, but the incision used for the removal of my kidneys is so sore.  The random vomiting isn't helping (happened again last night as I was standing in the kitchen talking to Joacim about dinner).  I started getting nauseous today which sucks, but "yay" least some warning to take some medicine to prevent it.  I have no idea where it's coming from or why.  I'm not eating or drinking much.  My blood pressure was really high yesterday, so I added a second dose of the one BP med I had started.  I'm just keeping my fingers crossed that it eventually works.

It annoys me when people asked if the surgery worked, and I tell them I'm not sure because my blood pressure is high, and they respond as though I said "no, it didn't work".  Ugh, drives me fucking nuts. I didn't say it didn't work.   I said that my blood pressure is higher than it was in the hospital.  Did it work?  I don't have a clue.  No one does.  But I'm not going to throw in the towel over a few high readings.  If I've learned anything through all of this crap I deal with, it's patience.  And I don't understand why or how, but I know that sometimes these things just settle out over time.  It makes no sense to me that you take a pill and don't see immediate response, but experienced it more times than I can count.  So I'm just not going to freak the hell out about anything right now.  I had a major surgery, I'm still in pain, and time will tell.

This brings ups something else that I feel like I need to get sometime off my chest.  At this time, I'm not looking in to pursuing another transplant.  I'm not listed.  I don't think about it.  But I always feel like I need to defend this decision.

There are other people with FSGS that have had it recur, only to go on to get one or two other transplants.  Honestly, when I read their stories, I just wonder "Why in the hell did they do it?"  Some of these people didn't have it recur for a few years....some people had the transplant when they were younger, had FSGS recur, went back on dialysis and now are adults and want to try again...some even think that maybe everything wasn't done in order to prevent a recurrence in their case.  Whatever the reason, the one thing they all have in common is some hope that things will be different.  And maybe that's where I'm different...I mean, I don't really have that hope anymore.  I'm not trying to be all melodramatic or anything, I just don't.

I'm confident that my team and I did everything possible to prevent recurrence of my disease.  When I look back on those days, there isn't one single thing that I'd change...other than the outcome, of course :)  I mean, I did Rituximab, and then switched to hemo from PD, and then plasmapheresis before transplant, and then plasmapheresis after transplant, and more Ritximab, and IVIG.....and just every single thing that I put my body and my mind and my family through, and yet this is my reality now.

I don't know if that helps, but maybe someone will get it and not secretly wonder "for me" whether or not I'm making the right decision.  You have no idea how you'll handle it unless it happens to you.


  1. You are my FSGS twin-- even though we look nothing alike. :-) My thoughts align with yours so very often. I wish we had gotten to know each other through different circumstances. Let's keep on moving, girlie. Eventually there will be a "fix."

    1. Oh Emme! I hope we get to meet up someday....share war stories ;)

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  3. It’s great to see you posting, again. Thanks so much. Your blog has meant so much to me.
    I’ve seen several specialist who are divided about a transplant. Several says, given the odds, they won’t do it. Giving what you know now, do you believe it was worth the try? If this is offensive questions please forgive me. I’m leaning not do it and cross my fingers for better technology to be available soon. People give me a lot of grief for thinking this way, but in the end it’s my decision. Thanks.

    1. Hi Kimberly! Thanks for reading...people like you, reaching out to let me know that I'm not's the only reason I keep documenting it all. Do I think it was worth it? Absolutely. I was well-informed about the risk for recurrence, but to be honest, I just didn't think it would happen to me. I felt that I had "paid my dues" so to speak and I was going to be one of those very fortunate few who didn't have a return of the disease in the transplant. Geesh....the number of promises I made to my daughter about how great everything was going to be after transplant....still kicking myself about it, but honestly, I'd do it all over again on a first transplant. Now a second transplant is a different story for me. I'm not sure if I want to go through it all again knowing that it came back in the first kidney. There are those cases of people in the same predicament as me and ended up getting a second transplant and are now FSGS free...but the chances of that happening are pretty slim. So, for's dialysis.

    2. hi jenny,
      i absolutely agree with your as well as kimberly's view on (repeat) transplantation! people confuse any chronic renal disease leading to renal insufficiency with FSGS and thus underestimate the (relatively higher) risk of post-transplantation renal failure associated with FSGS. as long as the mechanisms leading to FSGS are not sufficiently understood, the technical measures have not been refined and the immunosuppressants not further improved, any transplantation for patients with FSGS equals a russian roulette. I hope that medical endeavours such as those undertaken by the team of dr. shuvo roy (KIDNEY PROJECT) will get adequate attention and financial support by humanistically oriented fellows (hello, mr. bill gates and companions) and corporations to alleviate the life of myriads of patients struggling every day.
      cordial wishes

  4. I’m so sorry to to hear of all your recent problems you have been through so very much and certainly don’t deserve this!! I’m so sorry. My kidney function is at 12 and I’m still not on dialysis despite feeling desperately ill!! I’m having a op and tube put in on 25th July and they want to start dialysis 10days later!! Hope I last that long!! FSGS is a bastard!! It really dominates your life! I’ve elected for peritoneal dialysis at home overnight as I want to try and keep my days free like yourself. You continue to be amazing and inspirational thank you for your wonderful blog keep fighting!! I also hope that one day technological advances or improvements to meds’ etc bring a state of all transplants working!! I wish you all the best and will follow your progress. Thank you. Lezley W


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