Transplant at Barnes St. Louis

[Cupcake]

Well I'm headed for a transplant eval at Barnes- I've been on the list at northwestern; for reasons too complex to mention here my donor needs to use Barnes which was where I was going for a second listing. So looks like I'm getting a kidney! Woohoo!

My questions are for anyone who has been evaluated at Barnes-any tips, tricks, people to request/avoid? I'm very familiar with Chicago and planned to just live near the hospital for a couple of months after surgery, but am now excited to discover what St Louis has to offer. Do they do steroid-free suppression? How's the area around the hospital? Thanks

[Paul]

  Congratulations and good luck.

[cassandra]

Exciting news!! Good luck cupcake!!


     


Love, luck, patients and strength, Cas

[MooseMom]

I don't know St.Louis at all, but I did want to come on and wish you good luck.   

[SooMK]

Best of luck!

[Cupcake]

Finally got a call from the transplant coordinator at Barnes. Can't get me in for a month, so just gives me more time to fuss. Anyone else gotten an eval at Barnes? I'm grateful for anything you can share. Thanks!

[limernick]

Hi Cupcake, I made an account specifically to reply; its been at least a month since your last post so you may already know this stuff but just in case!

I had my living donor transplant done at Barnes in December of 2016 and truthfully had an amazing experience.  If you have specific questions I would be happy to help the best I can (I live here locally).  From what you have posted so far:

-Not steroid-free, at least I am not.  When I asked about it they said it was just because they preferred their methodologies and weren't convinced of the need to deviate.  I started at 20mg and tapered to 5mg daily pretty fast though.

-Regarding people to request or avoid - I know this is a cop-out answer but there was not a single person there that was not top-notch.  It was clear through my experience that they really care about the patients and their outcomes.  Immediately after the transplant I had seemingly the entire hospital in to visit and I have had multiple people from the program reach out since the procedure to follow-up and see how I am doing. You can tell that Barnes treats the Kidney program as the Prestige program that it is - everyone there knows their "ranking" and take pride in it (BJC was 7th in the world when I was there, not sure now)

-The immediate area around Barnes is pretty nice.  You are right next to Forest Park which is truly a gem of an urban park.  It has the zoo (voted best in the US!), a couple museums, the Science Center, The Muny and all the outdoor activities you could want.  There are several restaurants immediately below the hospital on the north side, and its just a bit north from "The Hill" - home to the best Italian food in the US (outside of Little Italy)!  Hotels are a little tough to come by in the immediate area but you have a few options.  The Chase Park Plaza and the Parkway are right there but are a little pricey, there is a Hampton Inn by the park but Im not sure what its rates are - you may have to look further into the suburbs for better deals.  There is a new(ish) Drury Inn at Hampton and I-44 that's not too far that may be a little less expensive.  If you are looking to rent for those few months you may want to look a bit further out also.  Even though the area is perfectly safe the rental market in that area is perhaps not the best - again a little further south would likely be best.

Hope this helps somewhat - feel free to let me know what other questions you have.  Good luck with everything!

[MooseMom]

It's so nice of you, limernick, to take the time to create an account to give Cupcake some really good information.  Thank you!

[Cupcake]

Thanks, Limernick! Your positive experience/attitude is very reassuring. How many days were you in the hospital? How was that stent? One man I heard from who was transplanted at Barnes by the older surgeon didn't have a stent. THanks again.

[Charlie B53]

I don't know anything about the TX at Barnes but they got a ENT Guy that did a wonderful job on my Wife.  Patsy had two stenosis' in her windpiepe caused by acid reflux boiling over into the airway causing acid burning and scarring to form huge 'donuts' which kept enlarging narrowing the center maing it very difficult for her to breathe.

The quack Dr we had previously been seeing kept telling her he had asthma and kept giving her steroids and inhalers.  The steroids just made the scarring grow faster.  I finally got tired of the quack when he told me I didn't have a back problem. (I had a fractured verterbra). I found a new Dr that looked and acted a lot like my clone.  It took me months to get Patsy to switch but once she did on that very first visit Dr listened to her lungs, then start moving his stethoscope upwards, repeatedly, until he was directly on the 'noisy' spot in her throat.  Didn't mess arouond, sent her traight to the Dr at Barnes.  One look with the camera and cut her throat, removed over an inch of airway.  Stitched her chin to her breast to keep from stretching the repair.  Recovery she could breathe better than she had in many many years.

You can't go wrong with Barnes.   They got a lot of great people.

[limernick]

Cupcake (and MooseMom), you are welcome!

I was in the hospital for 4 overnights (5 days) immediately following and then had a follow-up stay for 2 nights (3 days) about 1.5 weeks after that because my numbers had started to creep in the wrong direction and they wanted to observe.  Everything came down nicely and they let me loose after that.

My surgeon was Dr. Lin who was exceptional.  The scarring is almost invisible, honestly - I was really impressed with that.  In fact the scar from my drain seems much more prominent even than the surgical scar!  He did end up placing a stent which I was somewhat bummed about.  Removing that was - in my case - perhaps the most painful 15 seconds of my life.  But then it was done and the pain went away almost immediately.  My understanding is that women often have it much easier in that regard.  I had also heard that some of the other surgeons on the transplant team do not place stents - I don't believe it is protocol or anything and it may vary from surgeon to surgeon and from patient to patient - so you may get lucky!

[Cupcake]

Thanks again. I live about 3 hrs away; got mixed messages whether non local people stay in town afterwards. I had planned on it but social worker told me that was silly, and nurse practitioner who did my transplant physical said it was expected that I would stay. What do you think?

[limernick]

I guess it really depends upon your own situation.  What I mean is:

-If you are going to stay at home are you going to have someone that can afford to take approximately 8-10 hours a day driving to and from St. Louis when you have appointments?  Are you going to feel like being in a car that long?  I was pretty lucky in that other than the first little hiccup when I had to go back in the hospital I recovered very well, so I tolerated riding in a car immediately and started driving after 2 weeks (with doctor's permission).  But even still I don't know if I would have been up for a drive like that - even if it was just once a week.  I didn't take a longer car ride (1.5 hours away) until about 3 months after.  And once a week for those first few weeks is best case - heaven forbid there are complications that would require more follow-up.

-Those first few months are so critical, Barnes had told me that in the case of ANY emergency (short of imminent death) they wanted me to come straight to Barnes - even though there is a hospital less than 5 minutes from my house.  Their reasoning is that you are in such a sensitive state with the new kidney they don't necessarily trust other hospitals to do what is best for it - even if the emergency has nothing to do with the kidney itself.  As my nurse wife likes to say, all doctors think all other doctors are idiots    Do you like the emergency hospitals near to where you live?  That is a consideration.

-They had set-up in-home nursing for me three times a week immediately following for the first few weeks to get my blood work and vitals done.  They have several local companies that they use and the one I had made it so much easier to get all that completed (used it until I started driving after 2-3 weeks).  Do you have a local company that can do all of that for you(and is it covered by your insurance/Medicare/etc.? We had a bit of a fight on that)?  If not you (and whoever is taking care of you) may have more driving to do.

-Ultimately, do you heal better at home?  I think most people do but it's different from person to person.  Despite all I wrote above, it may be worth it to stay home if it will have you more calm and comfortable.  Plus whatever money you might save is always a plus

-I personally feel like I have a better handle on the cleanliness around me at home than somewhere I am not familiar, how do you feel about it?  Knowing that we had DEEP cleaned the house before my procedure and that it had only been us in the house provided some piece of mind as I was navigating those first weeks and getting comfortable with being immunosuppressed.  It was MY shower, MY toilet, etc.  Eventually I chilled out a bit and now of course I am comfortable almost anywhere, but those first few weeks? Yeah, home was nice.

So a very long answer basically saying....it's up to you!    Hopefully I made some sense though

[Cupcake]

Thanks again- that helps put it in perspective. There are corporate apts a few blocks from Barnes that get great reviews. My plan was to get a 2 br 2 bath so friends/family can rotate thru when I have surgery/ recover. Washer/dryer in the unit that I can sanitize with Clorox! But at home my cleaning lady runs the local Quest lab so I'm sure she would draw my blood and send it to Barnes. Very glad to hear you were driving so quickly. Gives me more to ponder!