Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Genny, congratulations on the successful yard sale!! I know it was a lot of work, you deserve to rest now. I will try to call you later. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 hi genny! so glad to hear the yard sale was a success! hope jodi is doing well.....prayers for both of u...be strong!! hugs karishma. >From: Babycolt98102690@... >Reply- > >Subject: Re: [ ] >Date: Sun, 11 Feb 2001 23:24:22 EST > >Hi : I want to know everything Dr. Reddy had to say when you have >time. I'm sorry I haven't written to you but you know we had the yard sale >at church yesterday for Jodi and it was a lot of work, it was well worth >it >though. We made over $2,000 if you can believe it. I will talk to you >again >soon, its after 11:00 and I have to get up early. Hope your feeling >better. >Love, Genny _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 Hi Genny...just wanted to let you know that indeed had not forgotten you! When you go to Miami on the 23rd, will Jodi go with you? I send you so much of my love and prayers, denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Hi Genny... I just looked back in all my e-mail..will never be able to go thru it all...and saw that Jodi was in the hosp at the same time as Ty....Boy they sure know how to scare the heck out us.... I am glad that Jodi is feeling better...but I hope she remembers that she has to be careful and not OVERDO....It is so easy...especially being a mom of a toddler.... I know when Ty feels good he wants to just go full steam ahead and do all that he has been missing out on....Well this time he is not feeling well enough to want to do anything...We go back to the doctors on Tues....see what they think.... We have plans to go to Chicago in the beginning of April...to visit my daughter and see my son who will be in Milwalkee for a performance....We are hoping Ty will be feeling good enough to go and enjoy himself...or we won't be going.....His doctors have given us hosp and doctors names on our route out there...We are taking the train....and the hosp in Chicago and Milwalkee...In fact the doctors are all orginally from where Ty goes now so we know most of them and they all know his doctor...So that has eased our minds alittle...We will be going on the 4th and coming home on the 10th...I know he will feel bad if we are not able to all go...but whatever happens happens....We can always trade the tickets in for other dates...but we will miss my sons last performance with this group.... Genny how is all your testing going.....My daughter who is 26 wants to be the donor for Tyler....We will see...It makes me rather nervous to think of them both in the OR at the same time....My other son also wanted to do something...but he has had UC since he was 3 so he is OUT of the Question... How old is Jodi....They are not interested in either my husband or myself being the donor...They would rather someone younger....and I have kidney problems so I would not be considered....Oh well.... Again tell Jodi we are thinking of her...and to take it easy.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Genny I am so sorry I hate to hear things like this. Tell her more than anything to try and keep her spirits up. I know it is so hard to do when you don't feel well. My brother is getting married the end of the month in Delaware so my doctor gave me a list of things to becareful of. I have alot of doctors in my family so I am taking my test results so they can see them. I hope things get a whole lot better for your family real quick. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2001 Report Share Posted March 25, 2001 Jerry, I am so glad to hear about your mother! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 Please keep us all in touch with what is going on with your testing..and how Jodi is doing.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 hi Genny, Thanks for letting me know about that. I haven't taken any and I wasn't planning to but one of my friends told me it worked really well for a friend of hers with hep. c.she said it really improved his blood tests.I don't think I really want to chance it causing more problems. Greg :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 Genny, Thanks for your response to me. It amazes me how positive you are about so many things, even though what your daughter and you are going through is incredible. I'll keep sending my prayers your way! Sincerely, Pam in CT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 Goodmorning Well it certainly seems like things are really going your way now and that the date will be set soon...I know you must be very excited but at the same time very anxious for both of you.... Keep us up with all the news and how Jodi is doing.....Things will all be turning around for both of you very soon.... Luanne ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 , thanks for your congratiulations. And yes this is the first time for us. We both have absolutely no idea what we can be expecting. But we don't mind...we're just happy. finds it fantastic as well. As I will absolutely keep you informed how everything goes with the medication in combination with this pregnancy. I also found it very strange that they advised me to continue the medication. But they felt it was safer for the baby because they don't know what my body will do if they take the meds away. Apparently they also have good ressult with pregnancies in transplant patients who use the same meds. But in my opinion it is always safer to take no meds at all during a pregnancy. However for me it is now too late to change that. I will surely keep you and Jodi informed! With love Loes The Netherlands Re: [ ] Loes > Loes, I'm so happy for you. Will this be your first child? Is all > excited too? I would be interested in hearing how you get a long for the > doctors have advised Jodi against getting pregnant. She has talked about > wanting one more but we will have to wait and see. I wish you and your baby > the very best and please take care of yourself and do as the doctors tell > you. PLEASE DON'T SMOKE > Take care and keep us informed. My prayers will be with you. > Genny/Jodi's Mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Genny, I JUST got your e-mail that you are home. I have been thinking about you and Jodi everyday and since my e-mail is so screwed I have not heard anything is a couple of weeks. You sound great and it sounds like Jodi is great also. A miracle did take place. God was indeed looking over you both. I sent both of you a card. I hope you got them. I sent it to the wrong address but it never came back so I assumed that you did. I am just so glad that you are both home and doing great. Please get a lot of rest and let me hear from you. Love, Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Genny, I'm so sorry you are going through this depression. I suffered severe depression after the birth of my second daughter, to the point that I admitted myself to a psychiatric unit for two weeks, and with lots of love & support from family, friends, and a wonderful counselor I made it through that very dark time. Hang in there, do as the doctors say, and remember you are loved & cared about by many. Hugs, AIH, PBC (01/01) Illinois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2001 Report Share Posted August 30, 2001 Hi Genny... Thanks for thinking of Ty...it is a stressful day needless to say....Everything thing went well....although the treatment should take about 2 1/2 hours and for Ty is takes...almost 10.....but it is what works.... He should be able to be coming down on his medrol also which will make him really happy...his face is rather puffy now and I know he hates it...plus he gets those bumps all over his face...not like red acne...just bumps.... glad that you and Jodi are doing so well....I can see her chasing the little one all over the back yard....and catching him now....HURRAY....life is wonderful.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 hey genny.....so nice to hear u and jodi are both doing so well...one more question for u....are u on any medication??? hope all else is well...take care K. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2001 Report Share Posted September 7, 2001 Hi Genny Well today is Friday so tomorrow I hope you put your feet up for a little while anyways....DON'T PUSH YOURSELF.....remember the dirt will always be there next week....lol....that is what I tell myself all summer when I would much rather be outside playing in the dirt..... Decided to start my fall cleaning the other day....YUCK....started in the kitchen ...all open shelves...everything out...so I cleaned and scrubbed and wash and reorganized....got everything done except the putting a coat of polish on the cabinets and island.....was going to do that today....BUT last night I remembered that the guys who have been working on the house were coming to SHEETROCK.....right next to the kitchen....all that work for nothing and it will really be worse when they are done in a week or so....So I am not planning on doing much but laundry for the next couple of weeks....Then I will have to start all over again....Oh well .....and the areas they are sheetrocking are in 3 different places in the house....so I have given up....so join me....grab a good book and sit outside in the lovely sept weather....We are in NJ and it has been absolutely glorious....I am reading " The Divine Secrets of the Ya Ya Sisters".....My daughter who is also 27...will be in Dec...reads the same type of books as I do...so we share....Unfortunately she lives in Chicago...so we have to wait until we see each other to do the exchanges..... Well now to the other reason I am writing you.....I forgot that Jodi was also on Medrol....and I just wrote about Ty being on it and how it has effected him.....Do you think that is what is causing Jodis headaches.....so far Ty hasn't had the headaches....mainly the bigger face and the bumps.....he is also on 8mg....hoping to be down to 4 by the end of October..... Well I hope you have a nice peaceful weekend...and that your house can last one more week.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Hi, How are you and Jodi? I haven't been on since the summer began and I was wondering how you girls were? Joan Claffey NJ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 HI Genny Well it sounds like you are doing pretty well...I didn't expect you to be able to just bounce back after all of this...plus the fact that even though you were not the one sick ...being a caregiver can take alot out of you so you still are starting behind the 8 ball...sort to speak... So far this yr has been alot better than last...if you remember Ty was in the hosp most of last winter....and then again for the month of July...very sick each time....it was mostly his spleen...which was so large that it was infarcting...meaning that blood flow could not get to all parts and so it would start to die off....turning into scar tissue....this happen 4 times...very painful...the one last march was the worst...having to be on morphine for the pain....with the last infart being last July ...since then he has been doing pretty well....it just that with so many things happening you just never know what will start...and once one starts the others love to follow.... He had his Remicade treatment last friday...he still has problems with receiving it...if you remember he went into shock August of 2000....and they stopped giving it to him...that is when he went down hill real fast....and ended up in the hosp from Nov to March...mostly in....they decided that they need to be able to give him the treatments...soooo they started them up again....the dose is 300mgs....and it is an infusion...it starts slow...10mgs an hour for 15 min....then upped to 20 and so on...until they get to the rate of 250 and hour....the treatment takes usually 2 1/2 hours with 30 min of monitoring after the infusion....When Ty gets his he gets pretreated first...at home he gets a medrol pack to start the day before and the that continues for 5 days....once we are there he gets benadryl IV...a pulse of steriods...which is 1 gram...equal to 1000 mgs of pred...and then a tylenol...then they start with 10 and increase slower....and because Ty had problems they decided to only go up to 150 per hour...but unfortunatley he shocked at that also...so they lowered it...and again after a month or 2 he shocked at that dose....Friday they were going up to 80mgs per hour...but we never got there...he shocked at 60mgs...so stopped the infusion....gave some meds to help him to recover...on O2 for an hour...and then when they could see he was better they started it up again to get the rest of the infusion....starting at 10mgs and worked up to 40....he is always monitored..and at the end they give him another dose of benadryl.....this whole thing takes over 13 hours....at the hosp...not counting our 2 hour trip there and 2 hours back home...makes for a very long day...and poor Ty...just never knowing when he will go into shock...another very scary and painful thing to happen....so by the end of the day I am mentally exhausted...and Ty likes to make everyone think he is just fine...making jokes...but I know he worries about going into shock and the way he feels after....but right now ...unless they come up with something else....this is the only way they know how to keep him well and out of the hosp.... But today he is doing ok....at school...only 2 1/2 more weeks ...and he has completed his freshman yr in college......yippee....... Sorry this was so long...but since it just happened a couple of days ago...it is all too fresh in my mind.... As far as me...busy working on the gardens...my favorite place to be....but the weather has been so weird up here in NJ....a couple of weeks ago it was 95...now it is in the very low 60's.... again ...sorry this went on....and on... Luanne Ty's mom PS..please let Jodi know how happy I am that she is doing soooo well.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Luanne, Thank you for sharing your life with me. I am new to the group and find so much comfort in hearing how others are doing. Ty's experiences make my life a cake walk. I will continue to pray for him and his caregivers. I find it remarkable that he still attends college. He must truly be a trooper. I am so ashamed of myself for the petty party I had yesterday. You have put my life in perspective. Again, hugs and thanks for sharing. Jo Re: [ ] Genny HI Genny Well it sounds like you are doing pretty well...I didn't expect you to be able to just bounce back after all of this...plus the fact that even though you were not the one sick ...being a caregiver can take alot out of you so you still are starting behind the 8 ball...sort to speak... So far this yr has been alot better than last...if you remember Ty was in the hosp most of last winter....and then again for the month of July...very sick each time....it was mostly his spleen...which was so large that it was infarcting...meaning that blood flow could not get to all parts and so it would start to die off....turning into scar tissue....this happen 4 times...very painful...the one last march was the worst...having to be on morphine for the pain....with the last infart being last July ...since then he has been doing pretty well....it just that with so many things happening you just never know what will start...and once one starts the others love to follow.... He had his Remicade treatment last friday...he still has problems with receiving it...if you remember he went into shock August of 2000....and they stopped giving it to him...that is when he went down hill real fast....and ended up in the hosp from Nov to March...mostly in....they decided that they need to be able to give him the treatments...soooo they started them up again....the dose is 300mgs....and it is an infusion...it starts slow...10mgs an hour for 15 min....then upped to 20 and so on...until they get to the rate of 250 and hour....the treatment takes usually 2 1/2 hours with 30 min of monitoring after the infusion....When Ty gets his he gets pretreated first...at home he gets a medrol pack to start the day before and the that continues for 5 days....once we are there he gets benadryl IV...a pulse of steriods...which is 1 gram...equal to 1000 mgs of pred...and then a tylenol...then they start with 10 and increase slower....and because Ty had problems they decided to only go up to 150 per hour....but unfortunatley he shocked at that also...so they lowered it...and again after a month or 2 he shocked at that dose....Friday they were going up to 80mgs per hour...but we never got there...he shocked at 60mgs...so stopped the infusion....gave some meds to help him to recover...on O2 for an hour...and then when they could see he was better they started it up again to get the rest of the infusion....starting at 10mgs and worked up to 40....he is always monitored..and at the end they give him another dose of benadryl.....this whole thing takes over 13 hours....at the hosp...not counting our 2 hour trip there and 2 hours back home...makes for a very long day...and poor Ty...just never knowing when he will go into shock...another very scary and painful thing to happen....so by the end of the day I am mentally exhausted...and Ty likes to make everyone think he is just fine...making jokes...but I know he worries about going into shock and the way he feels after....but right now ...unless they come up with something else....this is the only way they know how to keep him well and out of the hosp.... But today he is doing ok....at school...only 2 1/2 more weeks ...and he has completed his freshman yr in college......yippee....... Sorry this was so long...but since it just happened a couple of days ago...it is all too fresh in my mind.... As far as me...busy working on the gardens...my favorite place to be....but the weather has been so weird up here in NJ....a couple of weeks ago it was 95...now it is in the very low 60's.... again ...sorry this went on....and on... Luanne Ty's mom PS..please let Jodi know how happy I am that she is doing soooo well.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hi there Genny... Good to see from you...How is Jodi doing....I know the last time it sounded like she was really doing well...and how about you....I know you have had a tough time...I hope things are getting better everyday.... Now to Tyler.... He gets these Remicade treatments for his RA and Crohns...he had been taking Enbrel...an injection...back in 99 and his RA was doing well...but it does nothing for Crohns...then Ty had a very bad Crohns flare that landed him in the hosp....so they decided to start the Remicade....he did great for 10 months...getting an infusion every month....then on his 10th infusion he went into anaphylactic shock...that was terrible....had to be put on oxygen and the infusions were stopped for good....But with in 3 weeks he started having all kinds of problems....everything started going bad....that is when his spleen problem became really bad....they upped his pred but nothing seemed to help...and he continued to get sicker and sicker....running temps of 105...he was in and out of the hosp for the next 4 months.....mostly in....and they decided to start the infusions up again...They pretreated him...with a gram of solumedrol...that is 1000 mg. and IV benadryl and tylenol...he was in the hosp at the time so they sent him to ICU and started the infusion at a slow rate...not planning on taking it up to the highest rate...it starts at 10mg per hr...and works up to 250....but they would not take it that high with Ty...he did ok...so each month he started getting the infusions...with all the pretreatments....then last July he shocked again...but we caught it before it got really bad....so they stopped for awhile and then restarted it....only keeping the rate even lower.....and added another pretreatment of a medrol pack at home before an infusion....he did ok for another couple of months...but since Feb...he has started to have trouble with each infusion...but always being able to stop the infusion before it gets too far....this last time they had put him up to 40 per hr....and he shocked....really fast....no time this time...full shock....turning blue...neck swelling...lots of pain....not a pretty sight.... They stop the infusion and the docs tried to figure out what to do....after about an hour they decided to start again...from the 10 and only take it to 20....which means the infusion now lasts over 20 hrs....he was able to get the entire infusion....so we are waitng to see what they are deciding to do next.....They did a blood test called a HACA that will tell if Tys body is building up antibiodies against Remicade....he over drive immune system is being a real BULLY......they are talking about another kind of infusion that will be given as part of the pretreatment...so it is a waiting game right now.... We saw his RA doc on tues and he complained about his throat...they tested him and he is now being treated for strep throat....the never ending story of Ty... Sorry this was so long.... Hope you are both doing really well.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Genny hey nice to hear from you and thanks for the update on ...she really has had a tough go at it.... sounds like Jodi is doing well and how about you...I think I read that Jodi and her son...sorry I forgot his name...have moved back home....Is his name Colton....? the doctors have upped Tys steroids to 80mgs and he will get his Remicade this friday....just hoping he can get thru it and be able to come home...his birthday is sat...he will be 20...YIKES well good to hear from you...and thanks for the prayers for Tyler... take care and talk soon Luanne... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Hey Genny.... Wow sooo good to hear from you...it has been a long time.... I am glad that Jodi is doing so well....also glad that you dad is doing better.... My mom went thru all of that and more about 3 yrs ago...it was very tough ...but she made it and is doing well also... thanks for writing and letting me know that you think of us....it is very reassuring to know that there are people out there looking after us... take care and talk when you get a chance... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Hi Genny, Glad Jodi is doing well, hope you are too! Missed your post, I deleted a ton to catch up and start over. Think about you often, Patty -----Original Message-----From: BBNLU@... [mailto:BBNLU@...] Sent: Thursday, March 06, 2003 3:39 PM Subject: Re: [ ] GennyHey Genny....Wow sooo good to hear from you...it has been a long time....I am glad that Jodi is doing so well....also glad that you dad is doing better....My mom went thru all of that and more about 3 yrs ago...it was very tough ...but she made it and is doing well also...thanks for writing and letting me know that you think of us....it is very reassuring to know that there are people out there looking after us...take care and talk when you get a chance...Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.