Post Transplant & Support Groups

[Golferchick]

Hi,

My dad had a kidney transplant on February 4th, 2009 (PKD). Since then he has been back in the hospital 4 times for various issues that have come up since his transplant: CMV, rejection, a tube inserted directly into the new kidney to drain it due to blockage between kidney & bladder and most recently to remove the blockage between the new kidney and the bladder (he spent 8 days in the hospital with 4 of them in ICU). He still has the drain and they are going to clamp it tomorrow to see if the most recent surgery was successful.

My dad had not been on dialysis prior to the transplant and really felt pretty good. Since his transplant he has had all these problems and has become depressed. I was wondering if anyone has attended support groups (are there even any) and where would we try to locate one? I am hoping that if he meets others that have had transplants and sees that its not always a smooth ride (although we sure would love them all to be), that it may make him realize that it is just not only him.

I want him to see the positive in all of this and not only the negative.

Any suggestions would be great! Thank you.

[cariad]

I think most transplant support groups are for pre-transplant, but I am sure if you found one and spoke with the facilitator, your father would be welcome. Many transplant hospitals will run their own support group. It really depends on your area. I have considered attending one, but never have. I really think IHD is the best support group I could hope to find - no one has any vested interest in cramming the idea that transplant is a walk in the park down my throat. I am cynical and appreciate raw honesty in medical situations - most support groups strike me as too rah-rah-rah for transplant.

Perhaps your father would join us? We would love to offer him support, as well as you. 

I am sorry your dad is having such a hard time. Good luck!

[Rerun]

Contact your father's Transplant Coordinator for local face to face support groups.

Everyone is different and I'm sorry he is having problems.  Once they are ironed out he will feel much better.

[Golferchick]

We were chatting last week when he was in the hospital and I suggested coming on here to read others experiences. He is not very comfortable on the computer. My mom does read what I send her from this site. I will try again with him to get him here.

I have found lots of valuable information here as well as experiences.

I agree with you Cariad, that support groups (whatever type they are) do tend to be very rah-rah.

My mom is going to the hospital with him tomorrow and she plans on asking them. I doubt they do have a support group, but who knows, maybe they do

Thank you!

[okarol]

I can see why he'd be depressed if he was feeling pretty good before the transplant, and not on dialysis. He may even regret having done the surgery. We had a very difficult finding a support group here when Jenna was diagnosed with ESRD. Never did find one. But the hospital social worker did recommend a psychiatrist who started her on a low dose of antidepressant and she took them for almost 2 years. I think it helped her get through the tough time it took to adjust to dialysis.

[Romona]

If you have the National Kidney foundation nearby, they often have groups. I joined one but it isn't close by. They are great group. They discuss many topics. I have spoke to many by e-mail.

[Golferchick]

thank you for the suggestions. My mom has a phone call transplant center at Northwestern Memorial (where he had his transplant), so we will see what they say.

My dad went to the hospital for his appt yesterday and they clamped the drain from the new kidney. They told him that his old kidneys have completely shut down and how lucky he is to have had this transplant. He now realizes that he is and has changed his look on things.

His bladder is working fine with the clamp so we are crossing our fingers that all will be good for a while!

Thank you!!!

[Chris]

thank you for the suggestions. My mom has a phone call transplant center at Northwestern Memorial (where he had his transplant), so we will see what they say.

My dad went to the hospital for his appt yesterday and they clamped the drain from the new kidney. They told him that his old kidneys have completely shut down and how lucky he is to have had this transplant. He now realizes that he is and has changed his look on things.

His bladder is working fine with the clamp so we are crossing our fingers that all will be good for a while!

Thank you!!!

Is this Northwestern in Chcago?

If so there is a support group called OTS that meets every month in Downers Grove. I don't go because it's t night and since they changed locations, do not know my way around there.

I have the contact information for that group. There is a monthly newsletter too. Another suggestion is every April/May NKF of Illinois puts on a seminar where a bunch of different transplant patients pre and post meet up and are able to talk about concerns, what happened after seminars. Can also talk during lunch.

[Golferchick]

Hi Chris,
Yes, Northwestern Memorial in Chicago. It would be great if you can forward me the information for the support group. NMH has not mentioned this. Did you have transplant there? If so, how was your experience?

My parents are in the NW suburbs so Downers Grove is maybe 30 minutes away (I think, I moved from there 20 years ago).

[Chris]

Hi Chris,
Yes, Northwestern Memorial in Chicago. It would be great if you can forward me the information for the support group. NMH has not mentioned this. Did you have transplant there? If so, how was your experience?

My parents are in the NW suburbs so Downers Grove is maybe 30 minutes away (I think, I moved from there 20 years ago).

Yes I had my transplant there and my experience there has not been the best with them due to the pancreas doctor/surgeon. Kidney doctors I have had no problems with, but they do not handle my case.

Anyway, the meetings for OTS are held at Good Samaritan Hospital off I-88.

Organ Transplant Suport
P.O. Box 471
Naperville, IL 60566
Phone (630) 527-8682
Email: OrganTransplantSupport@gmail.com
Web: www.otsfriends.org

[Golferchick]

Chris,
Thank you so much for that information. It would be great if my dad does go. Even if it is just once so that he can see how others are doing, etc.

We have found that since it is a teaching hospital it is hard to track down a dr that is in charge and can make a decision.

Again, thank you for the info.

[Chris]

The nurses do not fare any better at the clinic when you or your local doctor call them in an emergency.

Be sure to check out the National Kidney Foundation of Illinois website next year after March for Living with Transplantation seminar held in Oak Brook for the last few years.  I posted the intinery for this years seminar at http://ihatedialysis.com/forum/index.php?topic=13103.0  It is in the .pdf file format at the bottom of the message.

[Golferchick]

Chris, thank you so much for this. I have sent this on to my mom so that she can "work" on my dad and get him to go. He just might.

This is more info than the transplant center gave us.

[Chris]

There is a luncheon for OTS  where you can talk to other transplant patients September 20 in Naerville at the Holiday Inn off I-80 and Naperville Road at the corner of Naperville Road and Diehl Road, but registration ends September 10 and cost $12 a person. Next meeting is October 2 from 7 to 9 pm.

[Golferchick]

Hi Chris,
I am so glad that you sent me this information. My parents are going to this and are looking forward to it.
-Marcy

[Chris]

No problem. I try to help with what little information I have.

[kellyt]

Chris is the best, isn't he?   So sweet and so knowledgeable!      

[Golferchick]

I just heard from my mom and his GP thinks he had a mini stroke. So now my dad is on his way to the ER at Northwestern Memorial. Please keep him in your prayers that that was the only one.

[Chris]

Sorry to hear Golferchick

Hopefully they got him in quick instead of letting him wait in the ER waiting room. That area is so noisey and uncomfortable. They let us transplant people salivate with all the coughing, sneezing, hacking people to keep us there longer I guess Local Hospital = Speed Pass to an available room in the ER.

Hope it wasn't a mini stroke and that it was something far less severe.

[Golferchick]

Chris, thank you for the kind words. He waited for 2 hours and just was seen by a doctor about 20 minutes ago. Transplant was supposed to let them know he was coming and they did not. My mom had spoken to them several times while he was waiting also. So frustrating!

I think my brother, who is germphobic, is having a harder time with the wait. Thank goodness for all the masks they have all over NMH!

[Chris]

I have been told that on several occassions and on a coupl occassions they ask who is that doctor, never heard of them and then can't find them for some reason. Hello, I have their business card right here!

Sometimes I have thought of calling an ambulence t get service to another hospital 

[Golferchick]

My brother was about to leave with him and take him to Lutheran General, which is so much closer. But that was when they decided to call him on back there.

I guess NMH has more serious things going on in there ER. Once when I was there with my dad (right after his transplant) there was a double gunshot victim. They were very excited about that one. I guess he took precedence.

[Chris]

Hopefully your dad will be alright and he can make it to the meeting that's coming up.