Well, we continue to see progress with the wet wrap treatments. While we were told by the Mayo doctors that the skin breakouts would continue for some time, we are experiencing "milder" and "smaller" patches developing. Rondia has actually been able to begin scaling back the frequency of her treatments which is very encouraging.
We received all of the reports, results, and documents that were produced from our Mayo Clinic visit. Very comprehensive, very complete, very detailed, yet very personable. We learned in nauseating clinical detail everything that the doctors there did, found, said, speculated, and confirmed. These same documents that we sometimes struggle to understand, we assume will make perfect sense to her three local doctors that will be managing her care. We say that, however there is still a possibility that some of them may not feel comfortable enough with the diagnosis, and proposed treatment plans, that we may be continuing some aspect of the treatments and follow up with others, say at Vanderbilt.
We have our first "post-Mayo" doctor visit tomorrow. There are some things that we are continuing to watch closely - like blood pressure. We were told to expect it to be higher than normal while on a strong steroid therapy, so she is keeping a very close eye on it.
More to come tomorrow evening after this doctor appointment, so stay tuned.
Thursday, February 3, 2011
Friday, January 28, 2011
Friday Home Update
Things are going well here at home. There were some struggles yesterday evening. One of the medicated creams that we were sent home with was running out. No problem, I thought - just ask the local doctor to order the refill, and away we go. Well, not quite so easy. Apparently there are precious few pharmacies that actually do compounding, and even then, they have to have the formula to mix it correctly. I chatted with several folks at Mayo last night trying to get that information to the pharmacy, only to learn that they were not able to make it. They did however help me find somewhere locally that could make it, so we got it taken care of today.
Rondia is doing well, just taking it easy, working on some Chocolate Mooze stuff. BTW, if you are not a Facebook friend of Chocolate Mooze, please check it out. They make some amazing and creative stuff, as well as some mighty tasty dip mixes. My personal favorite is the White Chocolate Cranberry dip that I affectionately call "Fat Boy Crack". Just one taste, and you are hooked.
Anyway, we are continuing with the wet wrap treatments, and really seeing some great results. We heard from the doctors at the Mayo Clinic today, and now have all of the results and documentation from our trip, and our local doctor has them as well. Rondia has a follow up appointment with our local doctor next Friday, so I'm sure that we will have some additional questions, and surely answers as well.
Keep the thoughts and prayers coming, they are greatly appreciated !!
Rondia is doing well, just taking it easy, working on some Chocolate Mooze stuff. BTW, if you are not a Facebook friend of Chocolate Mooze, please check it out. They make some amazing and creative stuff, as well as some mighty tasty dip mixes. My personal favorite is the White Chocolate Cranberry dip that I affectionately call "Fat Boy Crack". Just one taste, and you are hooked.
Anyway, we are continuing with the wet wrap treatments, and really seeing some great results. We heard from the doctors at the Mayo Clinic today, and now have all of the results and documentation from our trip, and our local doctor has them as well. Rondia has a follow up appointment with our local doctor next Friday, so I'm sure that we will have some additional questions, and surely answers as well.
Keep the thoughts and prayers coming, they are greatly appreciated !!
Wednesday, January 26, 2011
HOME !!
Well, after 1340 miles, we are finally home. Lot's of follow up with the local physicians on the schedule for tomorrow, along with the regular work stuff, of course. We will be continuing with the wet wrap treatments which are showing very encouraging results. Hope to have further updates in the coming days.
Tuesday, January 25, 2011
Day Two - Done !!
First things first - we are on our way home. Yeah !! Spending the night in Quincy, IL, then back to Paducah tomorrow.
Day two started sorta of like day one - except we now have a new treatment routine to do two or three times a day. It is time consuming using a combination of steroid creams, then a wet wrap to help the creams do their work. One thing that we learned yesterday is that the skin requires much moisture to heal.
The "items" that we are using to act like a wrap were some things that I picked up at Target last night. I should point out that it is the end of January, and there are still about seven or eight weeks of winter left until the spring solstace, but do you think that I could find thermal underwear or sweat suits in Minnesota in January ?? Heck no, but I could have bought all of the shorts, tank tops, and swim wear that I could afford - crazy !! Anyway, I wound up finding some very fine Minnesota Vikings PJ bottoms, and a thermal Minnesota Timberwolf top on the clearance rack. Did you catch that - on the clearance rack, in January, in Minnesota !! Some things I just don't understand.
Well, we finished up the wrap treatment, that takes about 1.5 hours, then it was pack up the car. We only had one appointment this morning, so we were hopeful that we would get to leave after that. We checked out of our room, with the understanding that we could stay another night if needed. We loaded up the car, then hopped on the shuttle to the Clinic downtown.
More paperwork, but then in short order, we were called back. We met with a nurse first today who did a complete H&P review, then the physician came in. She is a general medicine internist, but works exclusively with the dermatology department. We spent about a total of two hours with these folks, and here is what we learned:
We came to Mayo not knowing exactly what to expect, other than armed with the knowledge that this was a world class organization, and we hoped to be able to leave with at least some of the questions answered. The experience was amazing, truly world class, and not only do we have some answers, we have a confirmed plan of action moving forward.
Probably the one other thing that really stuck out to me was the efficiency at which her care was delivered. Appointments were made, and kept on time. When it came time to have some labs drawn, we waited with probably 50 or 75 other folks, and were processed in about five minutes. Everyone was validating all appointments to be sure that we were kept on task and on track. We never felt like we were rushed anywhere. The staff was very knowledgeable, and courteous, and even though this is a huge physical complex, we never lacked for directions on how to get somewhere.
As Rondia progresses with her recovery, I will continue to periodically update this blog, so be watching for the notifications. Again, we are grateful for all the thoughts, concerns, and prayers. Please allow them to continue. We are not out of the woods yet, but we are beginning to see the light.
Day two started sorta of like day one - except we now have a new treatment routine to do two or three times a day. It is time consuming using a combination of steroid creams, then a wet wrap to help the creams do their work. One thing that we learned yesterday is that the skin requires much moisture to heal.
The "items" that we are using to act like a wrap were some things that I picked up at Target last night. I should point out that it is the end of January, and there are still about seven or eight weeks of winter left until the spring solstace, but do you think that I could find thermal underwear or sweat suits in Minnesota in January ?? Heck no, but I could have bought all of the shorts, tank tops, and swim wear that I could afford - crazy !! Anyway, I wound up finding some very fine Minnesota Vikings PJ bottoms, and a thermal Minnesota Timberwolf top on the clearance rack. Did you catch that - on the clearance rack, in January, in Minnesota !! Some things I just don't understand.
Well, we finished up the wrap treatment, that takes about 1.5 hours, then it was pack up the car. We only had one appointment this morning, so we were hopeful that we would get to leave after that. We checked out of our room, with the understanding that we could stay another night if needed. We loaded up the car, then hopped on the shuttle to the Clinic downtown.
More paperwork, but then in short order, we were called back. We met with a nurse first today who did a complete H&P review, then the physician came in. She is a general medicine internist, but works exclusively with the dermatology department. We spent about a total of two hours with these folks, and here is what we learned:
- We may still have a Stevens-Johnson Syndrome diagnosis. We still don't have the results of the pathology of the biopsy samples, but it appears that among other things, the SJS may still be a possibility. With the presence of the steroids, and the other underlying conditions, it may be a long while before that determination can be made - if ever !!
- Her thyroid is still a little out of whack, so that will be followed up on
- Things like blood pressure, blood sugar, and bone density will have to be routinely monitored
We came to Mayo not knowing exactly what to expect, other than armed with the knowledge that this was a world class organization, and we hoped to be able to leave with at least some of the questions answered. The experience was amazing, truly world class, and not only do we have some answers, we have a confirmed plan of action moving forward.
Probably the one other thing that really stuck out to me was the efficiency at which her care was delivered. Appointments were made, and kept on time. When it came time to have some labs drawn, we waited with probably 50 or 75 other folks, and were processed in about five minutes. Everyone was validating all appointments to be sure that we were kept on task and on track. We never felt like we were rushed anywhere. The staff was very knowledgeable, and courteous, and even though this is a huge physical complex, we never lacked for directions on how to get somewhere.
As Rondia progresses with her recovery, I will continue to periodically update this blog, so be watching for the notifications. Again, we are grateful for all the thoughts, concerns, and prayers. Please allow them to continue. We are not out of the woods yet, but we are beginning to see the light.
Monday, January 24, 2011
Recap Of Day One
Wow, what a whirlwind day. We started off bright and early to catch the 6:40 am shuttle to the clinic. We arrived about 7:20 am to a very impressive entrance. Based on all that we knew or learned about the Mayo Clinic, we were expecting a world class experience. We were excited, apprehensive, nervous, all at the same time. We knew that we were no longer in Kansas anymore when we were directed to an information desk, that just so happened to have a garment check. Who knew !!
We began working on the obligatory new patient paper work, and before we could finish it, they called us back to the exam room. Rondia got to wear the very fashionable hospital gown, and in short order, the doctor came in. He proceeded to impress us by taking his own history and physical. He was very detailed orientated, and not only made copious notes, but also review her past medical history in fine detail. After about an hour of understanding and asking, he (and us) felt like we had a clear understanding of the past and current situation. He ordered some lab work, and took two biopsies. It will take about 48 hours for the results to come back. One of the things that he was testing her for was something called measuring the P450 enzyme. This apparently indicates how predisposed she is to allergic medication reactions. Well, I think that most of us can answer that question without the lab test, but whatever. Rondia was taken to the photo lab, and some pictures were taken of her condition. He then asked if he could call a floor conference, which is basically like a consultation with all of the MD's on the floor. I bet that there were 20 or 25 that filed through in quick fashion that ended with a hallway conference. It was the unanimous verdict of all the physicians of the same diagnosis.
In the end, he stated that he did not feel that we had a Stevens-Johnson Syndrome diagnosis, but rather a generalized pustular psoriasis condition. It apparently is even rarer than SJS, with them seeing about one diagnosed case a year. This brought some relief, but also some new concerns. The case last year was also triggered by a Plaquinil reaction. The doctor suggested that this won't be a quick recovery, and would not be surprised if it took six to nine months for her skin to completely heal. He will be following up with our Paducah doctors, and working out a therapy of cyclosporin. We may also be doing some follow up visits with Vanderbilt as well. Some of these details are yet to be worked out.
After we had spent about three hours with the physician, we were completed with this phase of the journey. Finally getting some specific answers to our questions !!
We had a couple of hours to kill before our next appointment, so we sought out a local recommendation for lunch. Neither of us had had anything to eat all day, because we suspected (correctly so) that some fasting lab work would be required. Anyhow, the guy at the coat check recommended a place called Newt's that was within close walking distance. He said that they had the best hamburgers in town. We strolled in the tropical 24 degree weather, to the upstairs bar called Newt's. Just a small joint, probably only has about 12 or 15 booths along with the bar area. We knew that this was a great place when the menu contained mostly hamburgers in various configurations. This and all the plaques and awards on the wall proclaiming the spoils of high community recognition. It lived up to it's name, and the meal was fantastic.
After lunch, we had an appointment to learn how to properly apply the new medicated cream, and wet wraps to help it work better. Again, the staff and physician were just amazing in their knowledge, and compassion. We learned about the new process, practiced it, and after about four hours of this, we were on our way back to the main entrance to catch the shuttle home. We were armed with new medications, new treatments, and lots of paperwork to read.
We arrived back at the hotel at about 5:00 pm, and just as soon as we walked in the door, my phone rang. It was Rondia's sister-in-law, asking if we had enjoyed our lunch at Newt's. I said, but of course, but how did you know - we had not advertised that fact anywhere just yet, and didn't run into anyone that we knew (although we did run into a couple from Pikeville, KY this afternoon). Come to find out, Rondia had left her phone at Newt's, and when Sherry called, she got to talk to some of the staff there. Too funny !!
In order to properly do the new wrap treatment back at the hotel, a trip to Target was in order. We needed some clothes, sweat suits, towels, and something waterproof to lay on the bed. I took this opportunity to go back downtown to retrieve Rondia's phone. Once at Target, I began looking for the items on the list.
I took all the Target stuff to the car, and headed back to the hotel. After a quick stop at a local Mexican restaurant for chips and salsa to snack on, I was back in our room. After snacking, we proceeded to do the wet medicated wraps on our own, successfully.
We have one more appointment in the morning with an internist in the Dermatology department, then hopefully it's back in the car and heading south. All for now, again, thanks to all of you for your thoughts and prayers.
We began working on the obligatory new patient paper work, and before we could finish it, they called us back to the exam room. Rondia got to wear the very fashionable hospital gown, and in short order, the doctor came in. He proceeded to impress us by taking his own history and physical. He was very detailed orientated, and not only made copious notes, but also review her past medical history in fine detail. After about an hour of understanding and asking, he (and us) felt like we had a clear understanding of the past and current situation. He ordered some lab work, and took two biopsies. It will take about 48 hours for the results to come back. One of the things that he was testing her for was something called measuring the P450 enzyme. This apparently indicates how predisposed she is to allergic medication reactions. Well, I think that most of us can answer that question without the lab test, but whatever. Rondia was taken to the photo lab, and some pictures were taken of her condition. He then asked if he could call a floor conference, which is basically like a consultation with all of the MD's on the floor. I bet that there were 20 or 25 that filed through in quick fashion that ended with a hallway conference. It was the unanimous verdict of all the physicians of the same diagnosis.
In the end, he stated that he did not feel that we had a Stevens-Johnson Syndrome diagnosis, but rather a generalized pustular psoriasis condition. It apparently is even rarer than SJS, with them seeing about one diagnosed case a year. This brought some relief, but also some new concerns. The case last year was also triggered by a Plaquinil reaction. The doctor suggested that this won't be a quick recovery, and would not be surprised if it took six to nine months for her skin to completely heal. He will be following up with our Paducah doctors, and working out a therapy of cyclosporin. We may also be doing some follow up visits with Vanderbilt as well. Some of these details are yet to be worked out.
After we had spent about three hours with the physician, we were completed with this phase of the journey. Finally getting some specific answers to our questions !!
We had a couple of hours to kill before our next appointment, so we sought out a local recommendation for lunch. Neither of us had had anything to eat all day, because we suspected (correctly so) that some fasting lab work would be required. Anyhow, the guy at the coat check recommended a place called Newt's that was within close walking distance. He said that they had the best hamburgers in town. We strolled in the tropical 24 degree weather, to the upstairs bar called Newt's. Just a small joint, probably only has about 12 or 15 booths along with the bar area. We knew that this was a great place when the menu contained mostly hamburgers in various configurations. This and all the plaques and awards on the wall proclaiming the spoils of high community recognition. It lived up to it's name, and the meal was fantastic.
After lunch, we had an appointment to learn how to properly apply the new medicated cream, and wet wraps to help it work better. Again, the staff and physician were just amazing in their knowledge, and compassion. We learned about the new process, practiced it, and after about four hours of this, we were on our way back to the main entrance to catch the shuttle home. We were armed with new medications, new treatments, and lots of paperwork to read.
We arrived back at the hotel at about 5:00 pm, and just as soon as we walked in the door, my phone rang. It was Rondia's sister-in-law, asking if we had enjoyed our lunch at Newt's. I said, but of course, but how did you know - we had not advertised that fact anywhere just yet, and didn't run into anyone that we knew (although we did run into a couple from Pikeville, KY this afternoon). Come to find out, Rondia had left her phone at Newt's, and when Sherry called, she got to talk to some of the staff there. Too funny !!
In order to properly do the new wrap treatment back at the hotel, a trip to Target was in order. We needed some clothes, sweat suits, towels, and something waterproof to lay on the bed. I took this opportunity to go back downtown to retrieve Rondia's phone. Once at Target, I began looking for the items on the list.
I took all the Target stuff to the car, and headed back to the hotel. After a quick stop at a local Mexican restaurant for chips and salsa to snack on, I was back in our room. After snacking, we proceeded to do the wet medicated wraps on our own, successfully.
We have one more appointment in the morning with an internist in the Dermatology department, then hopefully it's back in the car and heading south. All for now, again, thanks to all of you for your thoughts and prayers.
Day One Update
While I had a few minutes, I wanted to give a brief update concerning our day one experience here at the Mayo Clinic. We saw the chief dermatologist this morning who did an extremely thorough history and physical, along with a physical examination. Without going into great details, we have learned that she does not have the Stevens-Johnson Syndrome as originally thought. Instead it is an even rarer condition, a form of psoriasis. They typically only see about one case a year of this. They took some samples, and we had some additional lab work. We will have a new medication, and new way of treating her skin, and told that it may be up to nine months before she is completely healed. More to come later, so please stay tuned. We have had a great first day, but she is pretty tired, and hopefully will be leaving here soon for the day.
Sunday, January 23, 2011
We're Here !!
Well, we have made it - beautiful downtown Rochester. It's a balmy 9 degrees here (that's above zero folks). We spent last night in Quincy, IL, and woke up to a light snowfall of about 1.5 inches. The roads for the first 30 or 40 miles were covered with blowing snow, but about 20 miles from the Missouri / Iowa border, the snow stopped, and the roads cleared up. The poor car is now red and white polka dots, as these folks really make use of the salt on the roads.
I have not seen this amount of snow in many years. It is not unusual to see snow drifts four to six feet deep, and piles that are 20 feet or more high. Even with that amount of snow, the roads are in amazing shape - mostly just dry. Now, they may have snow piled up on each side of the road many feet high, but the roads are great.
We are staying at an Extended Stay America - studio apartment style rooms with a full kitchen, and lots of room to spread out. When I checked in, the clerk had me fill out a form, and one of the questions was concerning the purpose of the travel. She said, Mayo Clinic, I presume. She presumed that someone from sunny Kentucky would not travel to Minnesota in January for any other reason. Pretty smart lady !! They have a shuttle to the clinic that runs every 10 minutes, so we are going to take advantage of that convenience.
We have to be at the clinic at 7:45 am Monday morning for a 8:05 am appointment.
My goal is to provide regular updates on Rondia's experience on this blog. We are truly grateful for all the support and prayers of friends and family, so stay tuned.
I have not seen this amount of snow in many years. It is not unusual to see snow drifts four to six feet deep, and piles that are 20 feet or more high. Even with that amount of snow, the roads are in amazing shape - mostly just dry. Now, they may have snow piled up on each side of the road many feet high, but the roads are great.
We are staying at an Extended Stay America - studio apartment style rooms with a full kitchen, and lots of room to spread out. When I checked in, the clerk had me fill out a form, and one of the questions was concerning the purpose of the travel. She said, Mayo Clinic, I presume. She presumed that someone from sunny Kentucky would not travel to Minnesota in January for any other reason. Pretty smart lady !! They have a shuttle to the clinic that runs every 10 minutes, so we are going to take advantage of that convenience.
We have to be at the clinic at 7:45 am Monday morning for a 8:05 am appointment.
My goal is to provide regular updates on Rondia's experience on this blog. We are truly grateful for all the support and prayers of friends and family, so stay tuned.
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