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Hello everyone! Wanted to update you all on my mom…she's actually feeling great these days! Very excited about it! All except for the blasted itching. I called her doctor who is absolutely amazing and a great friend to ask if they could call in something to help her. He told the nurse to tell me to stop the mino immediately. Apparently he thought she was having an allergic reaction. Little did he know she's had these bouts of itching since August. (He is not really AP literate…my mom is the first patient he's prescribed mino for) I quickly told her to tell him NO, we are not stopping just as my mom is saying it and shaking her head NO in the background. I explained to the nurse what was going on…NOT an allergic reacion at all and the nurse told him and he said that we could continue to take it if we felt like we should. He wanted to see her today in his office.
We went to see him and I was armed with print outs from this board on itching. Also on the thread that I posted earlier asking about the combo of Zith and Mino. I told him that we did not have time to wait for clindy ivs to be approved and that I wanted her to start something else in addition to the mino. He said he wanted to test her liver function first and then we'd figure something out. He doesn't know which drug to choose nor what dosage to give her. In the mean-time I have emailed Dr. S in Dalton, GA asking him what we should do. I outlined my mom's history and asked him to call my mom's doctor. Or…he could just respond to me as to what we should do – So…that's where we are right now. She's doing well, she really is, but we need to attack more aggressively in my opinion.
Blessings,
MichelleI'm so very excited for you both, Michou. 🙂 Any progress is progress.
If you are comparing dosages of the Mino/Zith combo, the dose Dr. S. in Iowa had me on was 200 mg Mino M/W/F and every other Friday substitute the Mino with 2-250mg Zith. Other AP docs will use a different formula, but that's just one that worked well for me.
With your mom's detox issues and kidney problems have you asked any of her docs if she could use a sauna (infrared only) to detox. My itching reduced significantly after I became efficient at sweating again. If she can handle it, the sauna does wonders for improved circulation which is critical for SDers.
Take care…….kim
Yeah, Mom!!!!! I'm so glad to read your great news that Mom is doing well and feeling good! With your tenacious attitude she's going to come out of this with flying colors!
[user=1613]Lakes[/user] wrote:
Yeah, Mom!!!!! I'm so glad to read your great news that Mom is doing well and feeling good! With your tenacious attitude she's going to come out of this with flying colors!
Thank you! She is really looking forward to traveling to St. Louis for Thanksgiving – it's going to be a good trip and will do her a world of good. We'll visit my Grandma who is 87 (mom's mother in law and they are VERY close) and have a wonderful Family Thanksgiving. My brother, Uncle, Aunt and the girls are traveling also.
How are you doing fb friend??? Hope well!
[user=40]Kim[/user] wrote:
I'm so very excited for you both, Michou. 🙂 Any progress is progress.
If you are comparing dosages of the Mino/Zith combo, the dose Dr. S. in Iowa had me on was 200 mg Mino M/W/F and every other Friday substitute the Mino with 2-250mg Zith. Other AP docs will use a different formula, but that's just one that worked well for me.
With your mom's detox issues and kidney problems have you asked any of her docs if she could use a sauna (infrared only) to detox. My itching reduced significantly after I became efficient at sweating again. If she can handle it, the sauna does wonders for improved circulation which is critical for SDers.
Take care…….kim
Kim,
Thanks for the dosage info. Today I am hoping to speak to her kidney doctor via phone as we ended up in the Emergency Room again last Wednesday because she would not stop bleeding from her fistula. Need to get to the bottom of this and make sure he knows what transpired so we can figure out why this is happening to her. I will ask him about the infrared sauna. He did say at one point he wanted her outside in the sun for 20 minutes a day but we poo pooed that one because of the mino.
I will let you know what he says if I get to talk to him. Mom has STRICT orders to call me when he's there at the dialysis center today and put him on the phone.Blessings,
Michelle (Michou) :roll-laugh:Oh Michou! I am so happy each time I hear your mom has even a tiny bit of improvement and I am sure that a trip away from all the usual tediousness of her present life will push up some more improvement.Forgive this last part of the sentance but I just can't figure out how to express myself this morning.Guess I need an other cup of coffee. hehehe
Let us know how mom is after her stint at the hospital.
XXXDoctor said that he did not know anything about infrared saunas. Imagine that :doh: He did say that we would have to be really careful with dehydration, blood pressure rising etc. I would not let her get in that sauna on her days of dialysis because they basically suck the poor woman dry – but maybe on off days. I need to do more research before I make a decision and purchase a portable sauna. There's not a lot of information out there on usage for dialysis patients.
To make a long story short, (ha, short, not a chance…ha ha) there is a very experienced fistula “sticker” at the clinic, and every time she takes care of my mom, she has not had the bleeding problem. The two times this other not so good sticker girl “stuck” my mom, both times my mom ended up in the ER. Both times she had to use one of her permacath tubes because 1 of the needles was “up against the artery wall” and would not flow properly. Now, it doesn't take a rocket scientist to figure out that the gushing blood came from the “stick that was up against the artery wall” and from not so experienced sticker girl.
The more I think about this, and talk to the “experienced fistula sticker girl,” the more I KNOW that it was “STICKER ERROR” combined with heparin possibly. OTHER GIRL will NOT be sticking my mom again for a very long time. Apparently “experienced fistula sticker girl” has taken charge, will always stick my mom and create what she referred to as “tracks or callused areas” (sorta like breaking her arm in) so that other techs will be able to in time stick my mom. I told the doctor that under no circumstances will anyone other than “experienced sticker girl” touch my mother. He agreed. So now we will be going to see the vascular surgeon today to make sure the thing is ok and functioning properly and after Thanksgiving we'll try again to use it when we return from STL. I won't let the nurses in the STL clinic we are going to touch her fistula either. My mom is NOT going to go thru this again. Not if I can help it.
Blessings,
Michelle[user=31]Lynne G./SD[/user] wrote:
Oh Michou! I am so happy each time I hear your mom has even a tiny bit of improvement and I am sure that a trip away from all the usual tediousness of her present life will push up some more improvement.Forgive this last part of the sentance but I just can't figure out how to express myself this morning.Guess I need an other cup of coffee. hehehe
Let us know how mom is after her stint at the hospital.
XXXLynne, you are ABSOLUTELY right. It's the perfect way to express it. Tediousness is definitely the word and we experience it every day! I try to “shake things up a bit” like with trips to the ER but it is tedious right now but getting way better!
And “push up some improvement” is perfect too!
xxoo you are an angel!
MichouHey, Michelle!
Long term AP gal (with SD/lyme…blah blah blah) here. You are on the right path. I still have bad bouts of itching but they are only on my back and I pay my kids a quarter to help scratch….small price to pay! Just to encourage you! KEEP GOING WITH THE ANTIBIOTICS!!!! I can't stress this enough. That is the key!
BLESSINGS!
😎
eli
[user=368]Elijuh[/user] wrote:
Hey, Michelle!
Long term AP gal (with SD/lyme…blah blah blah) here. You are on the right path. I still have bad boughts of itching but they are only on my back and I pay my kids a quarter to help scratch….small price to pay! Just to encourage you! KEEP GOING WITH THE ANTIBIOTICS!!!! I can't stress this enough. That is the key!
BLESSINGS!
😎
eli
eli,
Thank you so much for the encouragement! We definitely need it! Its so nice to meet you! Your sense of humor (especially in your signature line) cracks me up! What an amazing attitude! Would love to hear your story and relay it back to my mom!Blessings right back to you!
MichelleMichou;
Our darling Eli is our resident clown and uplifter when anyone is down in the dumps.I have no idea how she does it as she was soooo sick that sometimes I woud dream about her then later wake up and worry some more.Guess that's just my mom mentallity. heheheLynnie Poo!!
How goeth the grandma biz??? Can I help? I am a fabulous corrupter of small children. I teach them all I know about piracy, nose picking (I have considerable knowlege about where to put the “rewards”), and general truancy. Let me know if you need assitance as lately I am sorta free.
Life is good! I have lost 225 pounds of ugly fat via divorce and have improved dramatically with the exit of the aforementioned ugly fat. I am up to no good and enjoying every moment. I have never been happier. Took the kids to London and after I turned that place upside down we went to Paris. It was lovely only I hope the Louvre didn't mind cleaning up that little “accident”. Did you know that the personnel at the Louvre take exception to vomiting raspberry Italian ice? Or perhaps it is just 10 year olds who have consumed too much raspberry Italian ice they don't care for? Probably a mystery which will remain, sadly, unsolved. We had another accident in Buckingham Palace but I think it will be awhile before they find that one…I hope. I gotta run. I just heard a death threat issuing from upstairs.
Blessings, old friend!
eli
PS: One of the reasons for the divorce is the man said I had no sense of humor. That and he thinks the things I write about our children are fiction. Perspective is everything!
[user=1335]mkbeeliever[/user] wrote:
We went to see him and I was armed with print outs from this board on itching. Also on the thread that I posted earlier asking about the combo of Zith and Mino. I told him that we did not have time to wait for clindy ivs to be approved and that I wanted her to start something else in addition to the mino. He said he wanted to test her liver function first and then we'd figure something out. He doesn't know which drug to choose nor what dosage to give her. In the mean-time I have emailed Dr. S in Dalton, GA asking him what we should do. I outlined my mom's history and asked him to call my mom's doctor. Or…he could just respond to me as to what we should do – So…that's where we are right now. She's doing well, she really is, but we need to attack more aggressively in my opinion.
Liver function normal and still waiting on Celiac panel. She's already had a biopsy and they said at that time she did not have Celiac but I wanted blood tests. Now if Dr. S would just email or call us and suggest what other antibiotics we need, we'll be off and running!
Hey Michou!
I would gradually ease into the different antibiotics as best you can. True, time is of the essence but gradually adding them is a prudent idea. Not that I know anything about prudent. I will look thru the archives and kinda get your mom's story and then I'll share mine. I am swamped for the next few days but will get to it soon.
I feel compelled to add that your mom is soooo lucky. I had no one physically watching over me and it was lonely. I did however have lots of folks lifting me up in prayer but no one showing up with dinner. If it isn't cancer people don't get it, but I'm sure you know that already. Feel free to PM me anytime. I will send along my private email. I am coming up into your neck of the woods to see family next month. I'd love to visit in person to offer encouragement. No worries. I never arrive empty handed.
Blessings from Charleston and Bless you for watching over your mom!
eli
[user=368]Elijuh[/user] wrote:
Hey Michou!
I would gradually ease into the different antibiotics as best you can. True, time is of the essence but gradually adding them is a prudent idea. Not that I know anything about prudent. I will look thru the archives and kinda get your mom's story and then I'll share mine. I am swamped for the next few days but will get to it soon.
I feel compelled to add that your mom is soooo lucky. I had no one physically watching over me and it was lonely. I did however have lots of folks lifting me up in prayer but no one showing up with dinner. If it isn't cancer people don't get it, but I'm sure you know that already. Feel free to PM me anytime. I will send along my private email. I am coming up into your neck of the woods to see family next month. I'd love to visit in person to offer encouragement. No worries. I never arrive empty handed.
Blessings from Charleston and Bless you for watching over your mom!
eli
Thank you for the advice! We don't know what we are going to do just yet. I keep checking my email like crazy in hopes Dr. S will have responded. I just emailed the other Dr. S in Ida Grove so hopefully one of them will respond!
I still think she needs something that targets the gut – at any rate, we won't be jumping into anything right now. The mino is doing great and I know it's a long, long road.My mom is my heart, my friend and such an amazing woman. I would do anything for her. God knew what he was doing when I never got married and He never blessed me with kids. (Too much info I know…but I'm pretty much an open book) at any rate, I know that this is what I'm supposed to be doing and I'm honored to be doing it. I never thought of it the way you put it…”If it isn't cancer, no one gets it…” my goodness, that is SO true. We have TONS of people lifting her up in prayer, but even our family here in GA don't understand how debilitating this disease is and are shocked at how drastically things have changed for her in the last year. And they just really aren't “there” for us. It's not their fault though, people just are in denial because it's hard and they have their own life to live.
We would absolutely be honored if we could meet you when you come to town! I think it would be a great Christmas present for my mom and me to get a little encouragement and to meet you! We'll have a nice lunch or dinner, chat and maybe have a toast to the new year, to wellness and the road back!! Sounds like a plan if you could fit it in!
Anyone else wanna join us?? 😉
I'll PM you with my info.
Blessings,
Michelle
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