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Possible game changer

Hi everyone.  My name is Dave.  I've been a member (albeit, mostly silent) for a while now.  Recently, I decided to start the ball rolling on a kidney transplant.  I have End Stage Renal Disease and I have been on dialysis for close to 3 years now.  I just celebrated my 65th birthday end of March.  I swear it took more like 70 years to reach 65.  I filled out the forms, which weren't as daunting/intimidating as I originally had thought.  I have 2 procedures I need to complete so my medical history is up to date.  The first one is a colonoscopy (which will be interesting since I have an ileostomy bag) and a nuclear stress test which is, as I understand it, a heart rate type of test on a treadmill with a radioisotope coursing through my bloodstream.  

Recently, I had spoken to my social worker who represents dialysis patients.  It was just a general conversation, and I happened to mention that I was reading about being under anesthesia for 8 hours during the transplant process.  That's a long time for me.  She acknowledged the length and then she began to tell me about "after-care".  Once out of the hospital, I will see the doctor daily for about two weeks.  Then, every other day and ultimately once a month.  I will also need care at home ... it was never discussed for how long.  The "care at home" is an issue.  For all intents and purposes, I live alone.  There are 3 other guys living there, but we all have individual lives and each of us is trying to make ends meet on a daily basis.  Care at home is not something they would be capable of doing for me. 

I would like to know if a home health care nurse is an option.  If not, please advise just exactly what kind of care I would need post-transplant that I could not administer on my own.  I have a permanent catheter in my bladder and I have already mentioned my ileostomy bag which is also permanent (no more large intestine).  Thank you for reading this and I'd love to hear your immediate experiences of health care once you were at home.

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Replies

  • Dave - Good luck with your transplant! Hopefully you will get a wide array of experiences here because as you will see, everyone’s is different. 

    In my experience, having someone home was critical. You will not feel well enough to take care of basics - cooking, laundry, etc - right away and in your recovering state there is a lot of medical information to process and act on. For example, what may be changing doses of medicine. Hard to keep track at first if groggy and recovering. 

    In terms of surgery, recovery and Rx details - everyone is different. My surgery was long because of a complication (8+ hours), but I was on prednisone for just one day. My recovery started slow first few days then went rapidly. But everyone is on their own timetable.

    The best advice I can give you is get in the best possible physical shape you can (I realize that’s difficult). That will help immensely with recovery.

    Good luck and I hope it moves quick!

     

     

     

     

     

     

     

  • You absolutely need someone.  I don;t see why home health care nurse would not be able to help out.  I was under 8+ hours.  More of a dilema that my donor's (wife) surgery took longer so I was just 'laying around'.  Nothing bad on that aspect.  Trust your doc's.  What you will need help with;

     

    • Getting food (prep, serving eating, & cleaning).  Remember -- nothing heavier than a milk jug due to the incision.
    • You WILL be amped up on prednisone.  LOTS of it.  This was a bad time.  I could not think straight with exception of middle of the night for 3 - 4 hours.
    • As above; you will need help with making your Rx pack.  If you can't think straight - you'll screw it up at a very critical time.
    • Driving; I was not allowed to drive for 6 weeks (I did towards the later of that timeframe).
    • Groceries & Cleaning  (again, germs)
    • Generally, oversight of you & your afairs. 

     

    You also mentioned something critical, you live with 3 other guys.  At this stage, you should think of them as germ carriers when they come in from work, etc.  I'd try to make other arrangements to isolate yourself while healing, especially immediately afterwards. A relatives house, AirBNB, anything.  Remember, you will not be at 100% (or close) for a few months.

    I am 2 weeks shy of my 3rd anniversiary.  I'd equate my (our) experience as "healing" mode & "maintenance" mode.  Obviously for the first few weeks (heck, months) -- your body is dealing with this wonderful new thing inside of you.  It's also a fireigh body and wants to reject it.  Anything to removes those possibilities is something I went out of my way.  Remember, you can't go to AutoZone and pick up a new kidney.  Once in maintenance mode -- life is 'pretty normal' & awesome.

    Good Luck

     

    George

     

    • George,

      Thanks for the details.  Every bit and byte of it is useful to me.  I like the last sentence before "Good Luck".  I agree 100%.  Life is awesome.  We've been given a gift AND because of Him who has imparted intuition and knowledge to our doctors, we've been given an extension to that gift.  We better use it for good as you do or after all is said and done ... what's the point?

      Dave

       

  • I just had my kidney transplant last week. My experience was nothing like you described. I was only under for 3 hours (they told me it's typically 2-4), then I recovered in the hospital for 5 full days, discharged on the 6th. I visit the transplant clinic once a week for 2 months, then every other week, then once a month  then every 3 months etc. I get labs drawn twice a week for 24 weeks, then that tapers down eventually to once a month. The one thing that you were told that is accurate is that you have to have a full time caregiver 24/7 for two weeks. You will be required to have this person with you at your transplant evaluation and both of you have to sign a contract stating that you have them and they will be there. If you don't have any friends or family that can commit to this, perhaps you can find someone through a senior agency  church or hire someone who can help you that first two weeks. Best of luck to you! 

    • Thanks for the reply keikeikelly,

      This looks like a game changer to the game changer.  :)  Just curious about such a time difference between what I was told and your experience: Did you have the (not sure this is worded correctly) laparoscopic transplant process.  Perhaps the # of hours I was told referred to the non-laparoscopic surgery.  The info came directly from my Social Worker who represents Dialysis patients.  Maybe she defaulted to the "standard" procedure.  Still have an issue with home health care, however.  I'll press my Social Worker when she visits me Friday during my treatment.

      Thanks so much for your time and info.  Knowledge squashes fear.

      Dave

       

       

      • Hi: I had the regular transplant incision. The surgery lasted 5 hours.  I was out of the hospital on the 3rd day and back at work in 3 weeks.  As far as a caregiver it was great to be able to stay on the 2nd floor for a few days and be waited on, but if I had only one floor I would have been fine by myself other than needing a ride to the clinic twice a week for the first two weeks, after which I could drive myself. No one asked if I had an in-home caregiver, but they did ask if I had a support system of family or friends.  

        • I have a friend named Jon who has a nice ride.  He could take me back and forth for the required visits at the clinic.  It's just the day to day in house care I would need for the period of time specified.  I am in the infancy stage of the transplant process at this time.  I'll be tapping everyone's shoulder eventually.  LOL  Bettylou, thank you for your input.  All things do work together for the good. 

          Dave

           

  •   Unfortunately most transplant hospitals won’t list anyone that does not have a care person

    So I would definitely check and make sure

    good luck 

    • I was afraid of that.  Thanks for the information.  I will check further.  Thanks again.

      Dave

       

  • I did not go home for a few months due to complications but it was kind of like my home since I was there a few months before as well.  I had a button to push for my needs while there but it was the usual stuff - meds and food.  Transportation is something that would be an important addition while at home.

    I did have PT come 2x weekly and Home health nurse came just a few times.  I had a family member who manged my meds briefly.  I would have had the nurse come as often as available had I been alone.  If I had nobody to assist I would recommend something like Meals on Wheels (or a variant depending on location).  I would have skipped food a lot due to lack of appetite (meds,surgery) but we need those nutrients, and specific diets.  

    Obviously much depends on what services are available to you but as you know a good social worker can uncover a lot for you.  Whether it is personal help, rides to appointments, food, etc. find everything you qualify for and use it.    Frankly, you need meds, food, make it to your appointments.  I needed help with those 3 things for a few months.  We had a program that offered payment to a caregiver if take a class and register correctly.  I did not use it myself.

    Best of luck.

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