Auto-Transplant -Any Comments

New Topic Locked Topic Printable Version
[ << Previous Thread | Next Thread >> ]

Stmll
Regular Member


Date Joined Apr 2007
Total Posts : 106
   Posted 9/10/2007 6:02 AM (GMT -7)   
Hi All,
 
I hope everyone has been doing ok, I have alot to think about it and just thought I would be it out there and get some input from you guys, I have LPHS, which is a very very painful kidney disease, there is no cure for it only pain control, which even with the Fntanyl Patch and Morphine for BT pain just dos not cut it, Dr, advised me that I could take the strongest pill known to man and I would still experince pain, So I got my results back on Thursday, I had a Kidney function test, both my kidney are working at a normal level, the Cat scan found that I have 2 Arteries going into my left kidney(the one that gives me pain), the trick will be to take those 2 arteries and make them into 1 for the transplant, They will take my kidney out, stip it of the nerves and relocate it into my lower abdomen, it will be aboit a 10 hr surgery now with the artery thing, the Dr, at London University Hospital is the only Dr in Canada that performs this surgery, I will be the 6th person in Canada to have this done, I have a 20%chance of this not working, a 10% chance of losing the kidney in the surgery, and if this happens in 20-30 yrs the kidney thst I sam left with could start to fail and I could end up on Dialysis, the next day after surgery I have a chance of my Kidney clotting and then would have to have it removed, it is about a 2 week stay in  hospital and in reality approx 10-12 months before I get back to myself, strength ect up...or I stay on th meds I am on and eventually go on to Methadone Dr. says as Methadone you don't biuld up a tollerance too,Friday night I was up al night from the trip to London on Thursday in terible pain, Sat we had my sister in law and hubby over for Dinner, after they left I was in pretty bad shape, all day Sunday I slept as the pain was so bad, today I feel like crap and still tired, I slept for almost 20 hrs yesterday, woke up at 6 am this morning, and still exhausted, I worry about the 20-30 yr thing maybe being on dialysis, that is when it is suppose to be our time kids are all gone, and he really stressed on how pain ful this surgery would be, due to the fact that the strength of meds that I am on now,my tollerance is so high, I am going to have trouble combating the pain afterwards, I don't know what to do, my husband said 1 thing that has got me thinking, he said " Tracey what ever you do I support you, but just remember once you do this there is no going back, this is permenant, and what happens in 2 yrs if they find something less envasive that works to kill the pain, you can't do it", but I can't live like this either, and what happens if i do all this worse case I loose the kidney in surgery and I have a 95% chance of the LPHS going into the other kidney, and it does I have no help as I only have 1 kidney, I will be back on meds for the rest of my life, or what if it does not work and I have this HUGE scar and end up back on meds, So that is why I am putting this out there to get some inout and maybe some advice from anyone that has had this done, oh just a note the other 5 pts that the Dr has done 3 - went off w/o a hitch they are living pain free lives, the other 2 - both of them their kidney clotted and had to be removed the next day, but they are pain free right now...Txs all for reading sorry it is so long...
Take Care
Tracey
DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Amitriplyne, Morphine 


Lucia_Delacroix
Regular Member


Date Joined Aug 2007
Total Posts : 59
   Posted 9/11/2007 10:33 PM (GMT -7)   
Oh wow, good luck in whatever you decide to do. That sounds really painful, and I will keep you in my thoughts. ((((((Gentle hugs))))))
Born with hip dysplasia in left hip, 2 surgeries to fix it when I was a very small toddler.

Also, 2 injured discs in lower back at L3-L4 and at L4-L5.

Meds:
Zyprexa 5 mg
Zoloft 25 mg
Valium 10 mg
Lortab 7.5mg/500mg
Soma 350 mg.


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 9/12/2007 2:36 AM (GMT -7)   
It sounds like you have thoroughly investigated all of you options. Unfortunately, this is a decision that only you can make. Having made several major medical decisions myself with all of my implants – thou they are not quite a life altering as your decision, I have a hunch that you have already know which way you are headed and are now looking for confirmation. My only recommendation at this time is to sit down with your husband and loved ones, if you can, and discuss all of your options. If you are religious, prayers, meditations and reflections can be extremely helpful. Whichever way you decide to go will be the right one, so never look back and question yourself. Good luck and all of my prayers are with you and your family at this time.

Stella Marie

Dx:  Rare progressive neurodegenerative disease called Multiple System Atrophy (brain rot, autonomic system failure, neuropathic pain and a whole lot more).  Added improvements:  Intrathecal pump and a spinal cord stimulator..

 Medications: Sinemet, Requip, Klonopin, Baclofen, Provigil, Lyrica, Fentanyl patches, Lidoderm patches, Dilaudid, Fentora and Zofran


Stmll
Regular Member


Date Joined Apr 2007
Total Posts : 106
   Posted 9/13/2007 5:33 AM (GMT -7)   

Thank-you for your very kind words, I have done alot of praying, thinking, researching, and to be honest I just don't have a good "feeling" about it, I was talking to another sufferer with LPHS and she had advised me that she heard of someone doing Chemoneurolysis and he has bee pain free for about 3 years, my gosh!! I would give anything to be pain free for any amount of time, I still cant believe that this is happening to me, and my options for procedures for pain are not that great..lol..I finally have a great DR. he has actually been educating himself on LPHS, and for pain control we are going to try the Fentanyl Patches in higher doses, and if does not work he is going to switch me over to Methadone, so at least he is trying to help me, unlike my last Dr, that many of you im sure remember, but I will keep you all posted on where and how I go for pain relief, I wish all of you a pain free day, and as comfortable as possible, Chronic Pain is an awful disease on it's own, let alone all the other underlying problems we all have...

Take Care

Tracey


DX; Loin Pain Hematuria Syndrome, A Very Rare Painful Kidney Disease,No Cure for this disease at this time, only thing is to Control Pain,
RX, Fentanyl Patch,Amitriplyne, Morphine 


Browndog75
New Member


Date Joined Mar 2015
Total Posts : 1
   Posted 3/6/2015 9:39 AM (GMT -7)   
I just found this forum and the post about LPHS. I too, have this condition and am scheduled for a kidney autotransplant in just a little over 5 weeks. I am wondering how your situation played out? Any help will be most appreciated.

Abilene
Veteran Member


Date Joined Apr 2014
Total Posts : 906
   Posted 3/6/2015 10:22 PM (GMT -7)   
Welcome Browndog75 to Healing Well!

I hope you are able to find someone to discuss this with but the person who wrote this has not posted here since 2009. You can click on the name and be taken to their profile page. There is some info there that might help you.

Our moderators ask that all new members make their own intro so everyone will see it and be able to welcome you. Please do that and let us know more about your condition. Perhaps there will be someone else with experience to help you. You might find more help in the Kidney Disease area but you are welcome to post here in Chronic Pain also.

Best wishes for your upcoming surgery to be a great success!

Post Edited (Abilene) : 3/6/2015 10:29:20 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 3/7/2015 9:40 AM (GMT -7)   
Hello Browndog & welcome to the chronic pain forum. So sorry to read what you have coming up pretty soon. Unfortunately, the original poster has not been back to the forum since the above post several years ago. We have no idea what has taken place since surgery.

We do ask all new members to make a separate intro post so that all members will see it & be able to say hello & welcome aboard. By posting on this older thread not many people will see your post.

I will go ahead & lock this thread so others will not post on it as we like to keep the older threads off of the main page. Thanks.
Susie
Moderator Chronic Pain & Psoriasis Forums
New Topic Locked Topic Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 10:59 PM (GMT -7)
There are a total of 2,735,178 posts in 301,280 threads.
View Active Threads


Who's Online
This forum has 151384 registered members. Please welcome our newest member, Effieadler009.
230 Guest(s), 8 Registered Member(s) are currently online.  Details
bluelyme, Im_Patient, Scaredy Cat, Girlie, Jaybee&GG, Kvo, puppylover, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer