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Maz,
thanks again for the candle light shining through the dark tunnel for me. I am really grateful to find Dr. S through RBF. Yes, Dr. S is a God sent angel to all of us. I told him that he really has saved many lives and his decision to stay on AP treatment after his retirement will be greatly appreciated by all of us.
Terri,
You are welcome! If you do decide to come, fly to Omaha and rent a car. The Super 8 motel we are staying now is $57 week day, $61 weekend… plus TX. We have two queen beds. With two queen beds/or King beds in Delux Motel, it's about $55 week day.
Kim,
Yes, I love the Chinese food. I did not have any problem with my vein. I decided to leave the IV needle in for as long as I can handle so that I don't have to get poked many times.
Michele,
It's gorgeous here. It's about 75 F and sunny. I can see a lot of green. Behind my room, there is a beautiful open field and hill. There are three houses on top of the hill. Very pretty.
If I forget any one, please forgive me. Thanks “goodwife” and all for your prayers for me. I will write more once.
Stay Tuned
JB
Hi All,
This morning, I had to go to the Hospital to draw blood (three tubes). I wasn't allowed to drink nor eat. Since I was there, I just went ahead did my IV. I guess I was a little dehydrated. When the nurse injected the saline solution, it really hurts. I realized what Kim told me so I kept drinking my lemon water…. After we were done, I told the nurse to take the hep lock off my arm because it started to have pink bump and started to swell. I will get new IV site this afternoon.
If I had to do it differently I would drive back to have breakfast and drink a lot of water before I go back to get IV.
By the way, I also asked Dr. S about generic or brand name of Minocin. He said it really did not matter. His patients have been doing well with generic brand. He was like a grandpa, giving me a little history lesson on how these pharmaceutical things work.
I am feeling okay. I don't have any upset stomach (at least not yet) or Herx reaction. I take probiotics twice a day plus my 400 mg plaquenil. Dr. S wanted me to keep my plaquenil for a while until I see the improvement, then I can start take 200 mg per day, gradually wean it off.
It's a gorgeous day today.
JB
I'm so glad that you're getting settled into Ida Grove and kicking some scleroderma bugs' butts!
I hope your treatments will continue to go well this week. Enjoy!
P.S. Yes – I am the one who's been emailing you.
Hi JB,
Wonderful News that you are in Ida Grove! How about that castle theme eh?
I absolutely did not mind the Deluxe Motel. They gave us the way back building. It was clean and very comfortable. Honestly, I could not complain one bit. And with my chemical allergies, I prefer something older as I react to new buildings with all the carpeting and whatever….
Glad he's not going to retire for a while. If he does, I surely hope that he finds another doc to accomodate those that are in need of AP.
So…do they still suggest to the Sinnott patients to enter at the E.R.?
One of the evenings when I was there, my I.V. ran out and nobody came to unhook me. There were two heart-attacks that came in that night so after waiting and waiting, I finally pulled out the needle, held the gauze on, and placed a band-aid over the needle hole. I don't think anyone even noticed that I left the premices!
I went to the park often and fed the ducks. I went to the nearby city that has the Donna Reed theatre. I can't recall the name of the city.
Enjoy your rest and your I.V. boost!
Diane/WI
The town with the Donna Reed theater is Denison – which is where she was from. In fact, I just read that this year they are celebrating the 50th anniversary of the Donna Reed show.
[user=63]Diane/WI[/user] wrote:
So…do they still suggest to the Sinnott patients to enter at the E.R.?
One of the evenings when I was there, my I.V. ran out and nobody came to unhook me. There were two heart-attacks that came in that night so after waiting and waiting, I finally pulled out the needle, held the gauze on, and placed a band-aid over the needle hole. I don't think anyone even noticed that I left the premices!
Yes, they still send all the patients to ER to do the IV. It's very handy. You can go any time you wish as long as it's 6 hours apart between each IV.
I am so sorry you had to take the action!!! I agree, you will really have to watch the IV yourself. Sometimes when the nurses are busy, you are out of luck. I am also amazed that those nurses do not wear gloves. I really worry about hygiene problems.
Whoever is coming, don't forgot to ask for an empty used Clindy IV bag to take home with you so that your doctor knows how to prescribe exactly the same type of IV for you. I got one today.
Today I am feeling tired and I seem to have a little problem with my lung. I also feel some dull pain on my lower ribs. I hope it goes away soon. Perhaps I am getting this Herx effect? I am not so sure.
JB
Thanks Joe!
Thats right…it is Dennison. Its a nice little city! I shopped there a little too. When I went in June they had a fair of some sort going on. I did tour the Donna Reed theatre.
A couple things that fascinated me about Ida Grove was the trailer manufacturing business. From my understanding, they were the first to build a hydraulic lift trailer. I told hubby about it and he purchased one about a year later and loves it for his construction business. Since that time, I see lift trailers all over the place. They may not all be from Ida Grove, but it triggers that memory for me.
Also…the Street-Car place. I was totally fascinated with that. A lot of work goes into the wood-working on those cars. Very impressive. 😎
Diane/WI
Sorry this is a long story
I went to the ER to do my 7th IV this morning. Dr. S came to visit me and gave me the prescription (for one year). I told him I felt tight on my chest and had a little trouble breathing. He said the flu like symptom and rib area bone pain might be herx reaction which meant I was reacting to the Clindy.
He put me on minocin (generic) 100 mg twice a day every day. I asked him “do you mean 200 mg daily?” He said he wanted to put me on this dosage until I have some improvement then he will reduce it to MWF. He wants me to keep him posted about my improvement.
I also asked him if I need to boost IV once a month or every 6 months. He said, “let's wait and see. You may not need it if you do well with minocin alone, or you may need to boost with IV, we will have to wait.”
I gave him a big hug, he said, “this is a good payment for me.” He is so nice and kind. He also mentioned about his intention to retire and let me remember my folder's number. I asked him if he would move after his retirement. He said he will stay here in Ida Grove to continue to do AP treatment.
Dr. S sat there talked to us for a while, asking us when we are heading home. Then he pulled out a picture of his family with Obama. He said when Obama came to Ida Grove, he went to his house to visit. That was so neat.
I will have three more IV to do. My IV site got a huge red bump again so they pulled it out. I will get a new IV site this afternoon. It's so cold here, 35F with freezing rain. Sometime today, there might be snow/rain.
I just got a call from my daughter (12), she was in her Gym class, and fell, her ankle may be broken…. my friend is taking her to Urgent care…. ….. oh well……Murphy's Law!!!
Stay Tuned,
JB
Hang in there, JB, 7 down and only 3 to go!!! I laughed out loud when I read about Dr. S. showing that picture of Obama because he showed it to me a year ago!!! This man is saving lives every day which he takes no credit for, so it is amusing that meeting and hosting an event for Obama is one of his proudest accomplishments. What a guy! That picture was a little dogeared a year ago so I can't imagine that it's in great shape now. Too funny.
Sorry you're having trouble with the IVs, but the fact that you are herxing is encouraging. Do hope your daughter's injury was not too traumatic having Mom and Dad so far away.
Keep us posted………kim
Kim,
You are right, the picture is pretty beat up. I did not realize it was a year ago. He knows we are from Indiana, and the Indiana primary is May 6th….. oh well, we did not tell him we are Republicans. :sick:
This is a very encouraging visit to Dr. S for me. I am so glad I made the decision to come here. If I'd just follow the AP protocol, I may not have got it right since I have organ involvement. Dr. S diagnosed me with MCTD with early sign of systemic scleroderma. He treats each patient differently according to their diagnosis, I guess. I encourage every one who ever wants to do AP, get the good AP doctor like Dr. S., and get it right.
Thank you, Kim. I really pray my daughter won't break anything. I never left my kids this long since they were born. I only went to national conferences several times, 3 nights each, and my husband was always home with them while I wasn't there. It's extremely hard for me. Just hope no more accident!!!
:JB
This is a very encouraging visit to Dr. S for me. I am so glad I made the decision to come here.Hi JB,
I bet it doesn't feel like you are “wasting your precious time”
Todd
I hope to see the improvement within 6 months. I pray my lung function will improve.
One thing I don't understand is why I am put on 200 mg Minocin daily? Is this a lot? I asked Dr, he said he could reduce it to 100 mg daily once there is improvement.
By the way, thanks for the good wishes, my daughter did not break any bones but severely sprained her ankle. She is on crutches. She is fine.
I hope tomorrow I will get my first treatment at 5:30 AM, the next will be 12:00 noon. Then we will be driving straight 10 hours home.
JB
HI JB, Glad to hear you've finished your week of IVs. If you feel a little tired, take a nap. That's what usually happens the weekend after IVs, for me.
I know you're worried about your daughter, but once you're home, you can give her a hug, and let your husband take over. You need to take care of yourself today, so that you can take care of them tomorrow. I know it's hard, but you're in the fight for your life, so one must prioritize.
I also take 200 mg of Minocin daily so I think that's the standard dose for SD. Have you checked into digestive enzymes like serrapeptase and nattokinase? There is some research about them helping to boost the effect of antibiotics. One brand is called Vitalzym but there are others. How are you feeling?
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