Is It Really Worth The Trouble?

[CebuShan]

Wow! Thanks for the info, Cariad. I'll do a little more digging. For the record, I tried Loyola for care but they were not what I expected. I had seen the dr. and was told that they would like to try putting a stent to my 1 functioning kidney to see if it might improve. We got home & got a call that they had an opening & to come back to the hospital. No problem. We went back. Finally found where we needed to go (try getting directions from an employee there, what a joke!) & got checked in. We were told to sit in the waiting area & someone would come and take us to my room. This was about 8:30 pm. My husband & I both dozed off and at 10:00 pm, he woke and wondered why no one had come to get us. He went to ask the receptionist, who was shocked that we were still there! We asked if we could just go up there ourselves so the receptionist called up and got permission. We went to the floor & wing that we were told and they were surprised to see us. Yes, we were told, they had me down on the list but they didn't have my room ready yet. I was getting really tired and was ready to leave. They finally said my room was ready and had someone take us to it. Then they apologized for not having a BED for me! Sure enough, there was a couch in the corner but no bed! I flopped down on the couch & said, "Fine, I'll sleep here".      The CNA left to look for a bed and I'm arguing with my husband because I just had a bad feeling and I wanted to go home. He finally talked me into staying and they did find me a bed. I did really like the surgeon & followed up with him. BUT I had a nurse that barely spoke English (I think she spoke Portuguese but I'm not really sure since I speak 0% Portuese.) None of the languages that I speak a little of didn't work & I simply could not understand her accent. Usually I have no trouble with accents but this time...       
Also, I kept having interns coming into my room to "check" on me. Normally I wouldn't mind but none of them seemed to have a clue what they were doing. I found out later that they weren't supposed to check on me! That explains why what I thought were simple questions were always met with confusion. They would tell me that they would aswk & be right back but none of them ever returned! I finally called my neph at home and told him everything that was going on. Since I was to lay flat on my back after the surgery, I had my husband take my cell phone (with my neph still holding and find the person in charge on the floor. My neph talked to them & whatever he said, all of a sudden, my care improved. I got a nurse that spoke understandable English and the interns stopped making appearances. As I was packing my stuff to leave, a director of something came to my room to apologize for the screw-ups. I will give her credit for not trying to make any excuses for what happened but I did tell her that I wouldn't be back. 
A few months later, a friend was sent up there for some tests (not kidney related) and had a similar experience!
Where I really wanted to go originally was Stanford in CA. When I lived in CA I had all of my major surgeries at Stanford. I love the staff there! From the Drs. on down to the cleaning staff. The biggest plus though, would be that I would have been close to my family. Unfortunately, my Mom is not doing too good right now and I wouldn't want her to feel pressured. So, I'll stay out here in the Midwest.      (I also think my husband was a little worried that I might not want to come back!)

[CebuShan]

I just wanted to let you all know that I spoke again with the coordinator and we are going to get started. She asked if there was something with my health the reason that I didn't finish before. I told her no I had just gotten scared. she said she'd be worried about me if I wasn't scared. That made me feel a bit better.

[bette1]

I went to Madison for both of my transplants and have been happy with my results and my care overall.  My first transplant lasted 12 years and my I had my second transplant about 18 months.  The main reason I went to madison both times was the wait time.  I am o negative and I did not have a living donor.  I was actually double listed both times at Chicago area centers and I got the call first for Madison

In my opinion, Madison's program is pretty good.  They are a little crazy about having you come up there for aftercare for the life of your transplant.  It's not a problem if things are running smoothly, but can be troublesome is you have a lot of issues with your transplant.

[CebuShan]

Wow, bette1, another O neg! I had thought for a long time that since I am the universal donor, that I was also the universal recipient. Boy, was I surprised! My husband wants to donate but he's A pos. The coordinator said they could test my blood and his to gauge the reaction. If I don't react well, them we would go on the matched pairs list. That is assuming my husband is able to donate. I chose Madison not for the wait time but because it was consistently ranked in the top three hospitals for transplants.

[winefred]

I had my transplant in Madison WI back in 1985, of course back then it was a three week stay in the hospital. I didn't have any problems with the staff or doctors, they were all very professional. I moved to another state so I haven't had any contact with them for over 7 years now but for years I had follow up appointments and never had any problems.

[winefred]

Hi: I am new here and wanted to let you know that I had my transplant at UWH in Madison WI, Sept 5, 1985. I had a living related donor, my brother who was a perfect match.  Back then, my hospital stay was 3 weeks. No matter how good you felt they wouldn't let you out until that 3 weeks was up. I have to say that I had a great experience at UWHM. The staff was friendly and helpful, but that was a long time ago, I now live in TN.

I had no problems for all those years but am now needing to go on the transplant list. I can relate! I don't know if I want to do it again either, not because I had any complications the first time, but a fear of the unknown with the meds and complications I may have with the 2nd transplant. I have been cleared to go on the list however they won't put me on because I don't have a support person. My husband passed in Feb from brain cancer. I also take care of my mother who has parkinsons and stage 4 demensia. I was also diagnosed with parkinsons a few months ago and knowing what is in store for me years down the road makes me wonder if I should even consider another transplant. To many descisions and to much confusion. I have read many posts and it has helped me sort through some of my issues.

Thanks for listening

[CebuShan]

Welcome to IHD, Winefred! Glad you found us. Lots of support here and no sugar-coating! Good luck with your decision. Thanks for your feedback.

[cariad]

Winefred, do you remember which UW-Mad nephrologist was following you? I do remember at least one nice one there. However, the refusal to spend 3 minutes on the phone with me cost me an entire day of my time, which included 5 hours of driving and a long wait at reception only to be told that they were not going to do the biopsy that I had gone down there for because they said my kidney was too old and scarred. Shortly after I vowed to never go back there, they lost their Medicare certification.

Anyhow, I seem to be the only one here who has had problems with Madison. I do tend to bring the dark side of doctors out for some reason, which is weird because I want to like them.

[winefred]

I remember my surgeon was Dr Solinger. My follow ups were in my home town of Marshfield at the clinic there. When I went to Madison for checkups, I don't remember ever seeing a dr. It was always PA's that saw me. I guess because I never had any problems. I saw my Neph in Marshfield for about 5 years then they kicked me out of the Neph dept because I was to healthy and had to go to the internal medicine dept for labs and check ups.

[CebuShan]

I only have 2 more tests left to get done! My GP has been wonderful in working with my neph to get all the tests ordered and keeping on me for procrastinating.