Close Mobile Navigation

Announcement

Announcement Module
Collapse
No announcement yet.

Just about to enter transplant world

Page Title Module
Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Just about to enter transplant world

    My doctor just submitted the paperwork about seeing if I qualify to get a transplant
    My gfr is 18 creatine is 2.7 63 year old
    My question after your doctor submitted your information how long did it take to contact you ?

    My doctor told me it is a long process . My daughter want to see if she can donate and two others have offer this is a hard decision For me to say yes if they are a good donor .

    My doctor said even if I had a donor right now I still have to go and have the test another question how long do these evaluation take
    My brother got a transplant in 2012 he told me he had to have his gallbladder out and his teeth fixed before he could get one
    I have stayed updated on my health like my mammograms and such
    I know there so much I don’t know
    And I know when I go to see the social worker and transplant team I will learn more

    I have Polycystic kidney I have already had one of the worst thing from this disease an aneurysm where I learn to walk and talk again so I am a fighter
    Thank you for any info you can help me with in this next journey if my life

  • #2
    Hello Pattypkd,

    Don't hold your breath. I am also a PKD sufferer and was sporting creatinine near 4.5 and GFR around 20 when I listed with my first transplant program in January 2011 at 57 years of age. I am Type O and didn't get a call through 8-1/2 years. I listed with a second transplant program in November 2012 and received two calls after 5-1/2 years.

    I started home hemodialysis training and with it hemodialysis in July 2012. I worked for 5-1/2 years full time while an HHD patient and that economic impact boosted by net worth by about 30% through compensation, group insurance, retiree health care savings, FSA, enhanced pension, maxed 401k and 403b annual contributions and company matching, maxed individual Roth IRA contributions, taxable investment contributions and increased SSDI/SSA retirement benefits.

    I left work on disability in late 2017 and continue conducting 4X and 5X weekly HHD via short daily and nocturnal treatments. My health at 65 after 7 years of HHD is very good with no comorbidities other than PKD.

    I am currently inactive on both transplant lists for an array of non-medical reasons of my choosing and plan to reactivate in late 2021, when I will be at the top of both transplant lists as I continue to accrue time even as I am inactive.

    Unless you have a rare blood type, e.g. B+ or AB neg or pos, you can expect a 5 to 10 year wait for a cadaver kidney. To stay list qualified, you must steer clear of comorbidities as you age, e.g. heart disease, cancer, etc. That is a tall order especially with your history of aneurysm. Presuming you get listed for transplant, you are in for a long wait.

    Comment


    • #3
      Thank you for responding when you get back on the list I hope you hear good news that they found you a kidney I know from all the research I have done that type o blood can only get a kidney from type o blood I thought that was strange that type O can give a kidney to anyone but type O can only revived a kidney from type O so my prayer for you is that you will received one in 2021

      My brother was blessed and received a kidney after 3 years of being on the transplant list and no rare blood type a positive he is in New Mexico I am on the east coast where I have heard it a lot longer my brother had an aneurysm that didn’t stop him from getting one he had to get his gallbladder out and his teeth fixed before he qualify

      Unfortunately I have a lot of relatives with this disease so I have seen them go through dialysis and some who transplant was rejected

      My mom and brother was on pd dialysis I help my mom with setting it up at night so I’m familiar with that and I like the part it doing it while you are sleeping so I thinking of that route

      I don’t know what the lord has plan for me if I do get a kidney being from a live donor or deceased donor it is in his hands I know there will be a wait if I have a live donor not as long wait if we all match
      I know at my age health problem can arises but I try to take care of myself so hopefully medically I will qualify

      Again prayers sent up for you and thanks for taking time out of your day to respond .
      Last edited by Pattypkd; 09-12-2019, 08:08 AM.

      Comment

      Back to Top
      Working...
      X