I actually had my scheduled consultation at Mayo Clinic on July 24th, but I'm behind on my blog so I'll try to catch up now.
First of all, it's likely that most of you have heard of the famous Mayo Clinic, founded by brothers William and Charles Mayo. There are several associated clinics now, with a secondary, large one in Scottsdale, AZ, but the original and largest facility is in Rochester, Minnesota. Rochester is about a 2-1/2 hour drive directly south of the Twin Cities. My maternal grandmother's family is from southern Minnesota, a little north and west of Rochester (near Mankato, Minnesota). More on that later.
My mother and I drove down the day before. We stayed with a cousin, and he and his wife drove us into Rochester the next day (he's familiar with the facility). The complex is huge, with quite a few buildings in downtown Rochester. The information packet you receive prior to your appointment has a map that will lead you to the correct building, and shows all adjacent parking ramps, etc.
The first thing you notice at Mayo is the efficiency. When you walk in your building there is someone right at the elevator helping you get where you need to go. When you make an appointment at Mayo, a lot of information is taken over the phone and then an information packet is mailed for you to fill out. Some of it gets sent back ahead of time (insurance information), and some you are asked to carry in with you for your physician. This is important because it means that when you reach the floor and service station given in your information packet they are ready for you. I brought a summary of my case written by my transplant physician, along with CDs of all my PET scans, and a copy of the recent lab work my Minnesota Oncologist had done the month before. The receptionist took this info to send to my physician and I took a seat.
I only had to wait for a few minutes before I was called in but while I was waiting it was fascinating to watch the assortment of people there, many clearly from different regions of the world. It really is an international facility with amazing credentials.
My doctor was one of three transplant physicians at the clinic. She started out by reviewing my case history to make sure she had the chronology correct. I was amazed at how extensive it was and at how she'd absorbed that information in so short a time. She reviewed my lab work and did a quick but thorough physical exam. When she was through here were her thoughts and recommendations:
1. She said I seemed to be doing very well post-transplant.
2. She suggested I stop taking the Acyclovir. This is an anti-viral drug used to prevent shingles, and is important during the regrowth of a new immune system. My transplant physician had originally planned to keep me on this for the first year post-transplant, but at the end of that first year extended it to the second year. She said she normally wouldn't keep a patient on it for even a year, and that all my numbers looked good enough to warrant stopping it. This was great news as it was my last transplant med.
3. My blood work was all in order, with the exception of the Creatinine level, which is and has been high ever since the transplant. They watch this number because it can indicate a problem with the kidney functions. My number is high, and could remain high or get worse, but could conversely come down as my new immune system settles in. She didn't appear too worried about it.
4. She suggested reducing the level of some on-going tests. I'd been having a PET scan 4 times a year in the first two years post-transplant, and they were going to reduce that number to 2 or 3, but she thought once a year would be adequate unless I noticed any masses. She suggested eliminating the bone-marrow biopsy all-together. I probably only would have gotten that done twice more, once at the 2-year and once at the 5-year mark, but was very happy to eliminate it. She said that was something they could run if other tests indicated a need, but that the need was not present at the time.
5. She suggested I have my porta-cath removed. I liked this idea a lot, since it requires maintenance every 4-6 weeks, but it also worried me; it's nice to have this in case you need access to your veins quickly and there's a problem with your arms, etc. She said that was normal for most patients, but since foreign bodies could present dangers of coagulation, and since I was doing so well, I should consider it. She suggested waiting until the 2-year milestone tests were completed, and if they were all clear, to do it then. I'm definitely going to talk about this with my Oncologist in the Cities and do it at the two-year mark if everything looks good.
6. She said the neuropathy in my feet would probably be permanent since it hadn't gone away yet. This results in a tingling sensation in the balls of my feet up to the toes, especially when I stand after sitting, and can sometimes result in some balance problems. Sometimes the sensation is stronger, like a stinging instead of a tingling, but overall I can live with it.
7. She knew who my Oncologist in Minneapolis was, and said there was no need for additional medical support at Mayo at this time. She had a full file now prepared for me, and would consult with my Oncologist as needed, and I could come back to Mayo if I experienced any problems, however.
The consultation took about 40 minutes, and was so efficient and thorough. When I left they gave me back all the materials I'd brought, because they'd already made copies for my file, and then I was sent to another station to do a flush on my porta-cath (since it was the 6-week maintenance mark). This only takes a few minutes, and very quickly thereafter we were on our way north again.
So long story short, the Mayo Clinic more than lived up to its reputation as a world-class medical facility with amazingly good customer service and quick, efficient and highly trained doctors and staff. It was quite an experience.
My next appointment is at the beginning of Sept., when I'll have my porta-cath flushed again and see my Oncologist. No doubt we'll set up my two-year milestone tests at that time for Oct. Fingers crossed that everything goes well for this important 24 month marker!
No comments:
Post a Comment