Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Hello All & especially those who have had transplants already. Has anyone else ever had their WBC drop really low? My blood tests at my transplant follow up at Indianapolis today showed that my WBC has dropped down to 0.6. They called me right after we got home to let me know they had finally gotten the results (apparently it was tested several times as it was so low) & told me to hold off taking any CellCept right now. They had lowered me from 1000 mg twice a day to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. When they get my CMV test results this week if it is still negative they are also going to take me off of Valycte again. Meanwhile I am going to have to stay home a lot and rest a lot to get better before Easter Sun. when I am booked to go visit my family in HI. (Also, they are going to be doing blood tests repeatedly the next few weeks.) My 70th birthday is April 17th and plan to celebrate it there. Then of my family of 6 there, 5 of them have birthdays between May 5 and June 2. I'd like to change my return flight to stay until at least June 6th instead of coming home the later part of April with Jeff. I have been going to the YMCA to do my water physical therapy exercises the last 3 weeks plus went this Mon. & it has helped my strength. I had planned to go tomorrow, but believe I will wait until Fri. and see if I can go again then. The exercises have helped my strength, and today I was able to walk through the huge Methodist hospital without using my cane or my walker. I pray that all of you who want a transplant are successful and stress how important exercising is for all of you. Also, I will appreciate your prayers for my health. Love and Aloha, Judy (OH) IPF 11/06 TX 8/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Judy, You certainly have my prayers behind you. I can only imagine the confusion with all the changes you are experiencing. Best Wishes, 33 FL IPF dx 1/06 > > Hello All & especially those who have had transplants already. Has > anyone else ever had their WBC drop really low? My blood tests at my > transplant follow up at Indianapolis today showed that my WBC has > dropped down to 0.6. They called me right after we got home to let > me know they had finally gotten the results (apparently it was > tested several times as it was so low) & told me to hold off taking > any CellCept right now. They had lowered me from 1000 mg twice a day > to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. > > When they get my CMV test results this week if it is still negative > they are also going to take me off of Valycte again. Meanwhile I am > going to have to stay home a lot and rest a lot to get better before > Easter Sun. when I am booked to go visit my family in HI. (Also, > they are going to be doing blood tests repeatedly the next few weeks.) > My 70th birthday is April 17th and plan to celebrate it there. Then > of my family of 6 there, 5 of them have birthdays between May 5 and > June 2. I'd like to change my return flight to stay until at least > June 6th instead of coming home the later part of April with Jeff. > > I have been going to the YMCA to do my water physical therapy > exercises the last 3 weeks plus went this Mon. & it has helped my > strength. I had planned to go tomorrow, but believe I will wait > until Fri. and see if I can go again then. The exercises have helped > my strength, and today I was able to walk through the huge Methodist > hospital without using my cane or my walker. > > I pray that all of you who want a transplant are successful and > stress how important exercising is for all of you. Also, I will > appreciate your prayers for my health. > > Love and Aloha, > Judy (OH) IPF 11/06 TX 8/07 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2009 Report Share Posted March 3, 2009 Judy, You certainly have my prayers behind you. I can only imagine the confusion with all the changes you are experiencing. Best Wishes, 33 FL IPF dx 1/06 > > Hello All & especially those who have had transplants already. Has > anyone else ever had their WBC drop really low? My blood tests at my > transplant follow up at Indianapolis today showed that my WBC has > dropped down to 0.6. They called me right after we got home to let > me know they had finally gotten the results (apparently it was > tested several times as it was so low) & told me to hold off taking > any CellCept right now. They had lowered me from 1000 mg twice a day > to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. > > When they get my CMV test results this week if it is still negative > they are also going to take me off of Valycte again. Meanwhile I am > going to have to stay home a lot and rest a lot to get better before > Easter Sun. when I am booked to go visit my family in HI. (Also, > they are going to be doing blood tests repeatedly the next few weeks.) > My 70th birthday is April 17th and plan to celebrate it there. Then > of my family of 6 there, 5 of them have birthdays between May 5 and > June 2. I'd like to change my return flight to stay until at least > June 6th instead of coming home the later part of April with Jeff. > > I have been going to the YMCA to do my water physical therapy > exercises the last 3 weeks plus went this Mon. & it has helped my > strength. I had planned to go tomorrow, but believe I will wait > until Fri. and see if I can go again then. The exercises have helped > my strength, and today I was able to walk through the huge Methodist > hospital without using my cane or my walker. > > I pray that all of you who want a transplant are successful and > stress how important exercising is for all of you. Also, I will > appreciate your prayers for my health. > > Love and Aloha, > Judy (OH) IPF 11/06 TX 8/07 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Judy, You have my prayers and keep your thoughts on your trip to see family. The doctors will see you through this! Margaret Pneumonitis 97, PH 06, COPD, PF, heart & respiratory failure 09 To: Breathe-Support Sent: Tuesday, March 3, 2009 4:30:25 PMSubject: Re: Low WBC & Prayer request Judy, You certainly have my prayers behind you. I can only imagine the confusion with all the changes you are experiencing. Best Wishes, 33 FLIPF dx 1/06>> Hello All & especially those who have had transplants already. Has > anyone else ever had their WBC drop really low? My blood tests at my > transplant follow up at Indianapolis today showed that my WBC has > dropped down to 0.6. They called me right after we got home to let > me know they had finally gotten the results (apparently it was > tested several times as it was so low) & told me to hold off taking > any CellCept right now.. They had lowered me from 1000 mg twice a day > to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. > > When they get my CMV test results this week if it is still negative > they are also going to take me off of Valycte again. Meanwhile I am > going to have to stay home a lot and rest a lot to get better before > Easter Sun. when I am booked to go visit my family in HI. (Also, > they are going to be doing blood tests repeatedly the next few weeks.)> My 70th birthday is April 17th and plan to celebrate it there. Then > of my family of 6 there, 5 of them have birthdays between May 5 and > June 2.. I'd like to change my return flight to stay until at least > June 6th instead of coming home the later part of April with Jeff..> > I have been going to the YMCA to do my water physical therapy > exercises the last 3 weeks plus went this Mon. & it has helped my > strength. I had planned to go tomorrow, but believe I will wait > until Fri. and see if I can go again then. The exercises have helped > my strength, and today I was able to walk through the huge Methodist > hospital without using my cane or my walker.> > I pray that all of you who want a transplant are successful and > stress how important exercising is for all of you. Also, I will > appreciate your prayers for my health.> > Love and Aloha,> Judy (OH) IPF 11/06 TX 8/07> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Judy, You have my prayers and keep your thoughts on your trip to see family. The doctors will see you through this! Margaret Pneumonitis 97, PH 06, COPD, PF, heart & respiratory failure 09 To: Breathe-Support Sent: Tuesday, March 3, 2009 4:30:25 PMSubject: Re: Low WBC & Prayer request Judy, You certainly have my prayers behind you. I can only imagine the confusion with all the changes you are experiencing. Best Wishes, 33 FLIPF dx 1/06>> Hello All & especially those who have had transplants already. Has > anyone else ever had their WBC drop really low? My blood tests at my > transplant follow up at Indianapolis today showed that my WBC has > dropped down to 0.6. They called me right after we got home to let > me know they had finally gotten the results (apparently it was > tested several times as it was so low) & told me to hold off taking > any CellCept right now.. They had lowered me from 1000 mg twice a day > to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. > > When they get my CMV test results this week if it is still negative > they are also going to take me off of Valycte again. Meanwhile I am > going to have to stay home a lot and rest a lot to get better before > Easter Sun. when I am booked to go visit my family in HI. (Also, > they are going to be doing blood tests repeatedly the next few weeks.)> My 70th birthday is April 17th and plan to celebrate it there. Then > of my family of 6 there, 5 of them have birthdays between May 5 and > June 2.. I'd like to change my return flight to stay until at least > June 6th instead of coming home the later part of April with Jeff..> > I have been going to the YMCA to do my water physical therapy > exercises the last 3 weeks plus went this Mon. & it has helped my > strength. I had planned to go tomorrow, but believe I will wait > until Fri. and see if I can go again then. The exercises have helped > my strength, and today I was able to walk through the huge Methodist > hospital without using my cane or my walker.> > I pray that all of you who want a transplant are successful and > stress how important exercising is for all of you. Also, I will > appreciate your prayers for my health.> > Love and Aloha,> Judy (OH) IPF 11/06 TX 8/07> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Judy, You have my prayers and keep your thoughts on your trip to see family. The doctors will see you through this! Margaret Pneumonitis 97, PH 06, COPD, PF, heart & respiratory failure 09 To: Breathe-Support Sent: Tuesday, March 3, 2009 4:30:25 PMSubject: Re: Low WBC & Prayer request Judy, You certainly have my prayers behind you. I can only imagine the confusion with all the changes you are experiencing. Best Wishes, 33 FLIPF dx 1/06>> Hello All & especially those who have had transplants already. Has > anyone else ever had their WBC drop really low? My blood tests at my > transplant follow up at Indianapolis today showed that my WBC has > dropped down to 0.6. They called me right after we got home to let > me know they had finally gotten the results (apparently it was > tested several times as it was so low) & told me to hold off taking > any CellCept right now.. They had lowered me from 1000 mg twice a day > to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. > > When they get my CMV test results this week if it is still negative > they are also going to take me off of Valycte again. Meanwhile I am > going to have to stay home a lot and rest a lot to get better before > Easter Sun. when I am booked to go visit my family in HI. (Also, > they are going to be doing blood tests repeatedly the next few weeks.)> My 70th birthday is April 17th and plan to celebrate it there. Then > of my family of 6 there, 5 of them have birthdays between May 5 and > June 2.. I'd like to change my return flight to stay until at least > June 6th instead of coming home the later part of April with Jeff..> > I have been going to the YMCA to do my water physical therapy > exercises the last 3 weeks plus went this Mon. & it has helped my > strength. I had planned to go tomorrow, but believe I will wait > until Fri. and see if I can go again then. The exercises have helped > my strength, and today I was able to walk through the huge Methodist > hospital without using my cane or my walker.> > I pray that all of you who want a transplant are successful and > stress how important exercising is for all of you. Also, I will > appreciate your prayers for my health.> > Love and Aloha,> Judy (OH) IPF 11/06 TX 8/07> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Judy i am so glad you posted i was asking about you i didn't even read your post yet i have to go back and read it Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Low WBC & Prayer requestTo: Breathe-Support Date: Tuesday, March 3, 2009, 5:17 PM Hello All & especially those who have had transplants already. Has anyone else ever had their WBC drop really low? My blood tests at my transplant follow up at Indianapolis today showed that my WBC has dropped down to 0.6. They called me right after we got home to let me know they had finally gotten the results (apparently it was tested several times as it was so low) & told me to hold off taking any CellCept right now. They had lowered me from 1000 mg twice a day to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. When they get my CMV test results this week if it is still negative they are also going to take me off of Valycte again. Meanwhile I am going to have to stay home a lot and rest a lot to get better before Easter Sun. when I am booked to go visit my family in HI. (Also, they are going to be doing blood tests repeatedly the next few weeks.)My 70th birthday is April 17th and plan to celebrate it there. Then of my family of 6 there, 5 of them have birthdays between May 5 and June 2. I'd like to change my return flight to stay until at least June 6th instead of coming home the later part of April with Jeff.I have been going to the YMCA to do my water physical therapy exercises the last 3 weeks plus went this Mon. & it has helped my strength. I had planned to go tomorrow, but believe I will wait until Fri. and see if I can go again then. The exercises have helped my strength, and today I was able to walk through the huge Methodist hospital without using my cane or my walker.I pray that all of you who want a transplant are successful and stress how important exercising is for all of you. Also, I will appreciate your prayers for my health.Love and Aloha,Judy (OH) IPF 11/06 TX 8/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Judy i am so glad you posted i was asking about you i didn't even read your post yet i have to go back and read it Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Low WBC & Prayer requestTo: Breathe-Support Date: Tuesday, March 3, 2009, 5:17 PM Hello All & especially those who have had transplants already. Has anyone else ever had their WBC drop really low? My blood tests at my transplant follow up at Indianapolis today showed that my WBC has dropped down to 0.6. They called me right after we got home to let me know they had finally gotten the results (apparently it was tested several times as it was so low) & told me to hold off taking any CellCept right now. They had lowered me from 1000 mg twice a day to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. When they get my CMV test results this week if it is still negative they are also going to take me off of Valycte again. Meanwhile I am going to have to stay home a lot and rest a lot to get better before Easter Sun. when I am booked to go visit my family in HI. (Also, they are going to be doing blood tests repeatedly the next few weeks.)My 70th birthday is April 17th and plan to celebrate it there. Then of my family of 6 there, 5 of them have birthdays between May 5 and June 2. I'd like to change my return flight to stay until at least June 6th instead of coming home the later part of April with Jeff.I have been going to the YMCA to do my water physical therapy exercises the last 3 weeks plus went this Mon. & it has helped my strength. I had planned to go tomorrow, but believe I will wait until Fri. and see if I can go again then. The exercises have helped my strength, and today I was able to walk through the huge Methodist hospital without using my cane or my walker.I pray that all of you who want a transplant are successful and stress how important exercising is for all of you. Also, I will appreciate your prayers for my health.Love and Aloha,Judy (OH) IPF 11/06 TX 8/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Judy i am so glad you posted i was asking about you i didn't even read your post yet i have to go back and read it Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Low WBC & Prayer requestTo: Breathe-Support Date: Tuesday, March 3, 2009, 5:17 PM Hello All & especially those who have had transplants already. Has anyone else ever had their WBC drop really low? My blood tests at my transplant follow up at Indianapolis today showed that my WBC has dropped down to 0.6. They called me right after we got home to let me know they had finally gotten the results (apparently it was tested several times as it was so low) & told me to hold off taking any CellCept right now. They had lowered me from 1000 mg twice a day to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. When they get my CMV test results this week if it is still negative they are also going to take me off of Valycte again. Meanwhile I am going to have to stay home a lot and rest a lot to get better before Easter Sun. when I am booked to go visit my family in HI. (Also, they are going to be doing blood tests repeatedly the next few weeks.)My 70th birthday is April 17th and plan to celebrate it there. Then of my family of 6 there, 5 of them have birthdays between May 5 and June 2. I'd like to change my return flight to stay until at least June 6th instead of coming home the later part of April with Jeff.I have been going to the YMCA to do my water physical therapy exercises the last 3 weeks plus went this Mon. & it has helped my strength. I had planned to go tomorrow, but believe I will wait until Fri. and see if I can go again then. The exercises have helped my strength, and today I was able to walk through the huge Methodist hospital without using my cane or my walker.I pray that all of you who want a transplant are successful and stress how important exercising is for all of you. Also, I will appreciate your prayers for my health.Love and Aloha,Judy (OH) IPF 11/06 TX 8/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Judy... I'm really sorry to hear about your continued ups and downs. Gee Whiz, you have been through so much. I'm seeing that even having a transplant does not necessarily give one smooth sailing. I hope you will be able to go to HI and spend good times with your family. The worry of it all must be hard to tolerate. God Bless. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Low WBC & Prayer request Judy, You certainly have my prayers behind you. I can only imagine the confusion with all the changes you are experiencing. Best Wishes, 33 FLIPF dx 1/06>> Hello All & especially those who have had transplants already. Has > anyone else ever had their WBC drop really low? My blood tests at my > transplant follow up at Indianapolis today showed that my WBC has > dropped down to 0.6. They called me right after we got home to let > me know they had finally gotten the results (apparently it was > tested several times as it was so low) & told me to hold off taking > any CellCept right now. They had lowered me from 1000 mg twice a day > to 500 mg twice a day because it was 1.6 on Jan. 22, but on Feb. 3rd it was 2.6, then on the 10th it was down to 2.2. I was shocked to hear it now is 0.6, but I woke up with a cold on Sun. morning, and had not had a common cold in years. Of course I used to take lots of Vit C, but can no longer do that. Now I am just using Benadryl for relief. > > When they get my CMV test results this week if it is still negative > they are also going to take me off of Valycte again. Meanwhile I am > going to have to stay home a lot and rest a lot to get better before > Easter Sun. when I am booked to go visit my family in HI. (Also, > they are going to be doing blood tests repeatedly the next few weeks.)> My 70th birthday is April 17th and plan to celebrate it there. Then > of my family of 6 there, 5 of them have birthdays between May 5 and > June 2. I'd like to change my return flight to stay until at least > June 6th instead of coming home the later part of April with Jeff.> > I have been going to the YMCA to do my water physical therapy > exercises the last 3 weeks plus went this Mon. & it has helped my > strength. I had planned to go tomorrow, but believe I will wait > until Fri. and see if I can go again then. The exercises have helped > my strength, and today I was able to walk through the huge Methodist > hospital without using my cane or my walker.> > I pray that all of you who want a transplant are successful and > stress how important exercising is for all of you. Also, I will > appreciate your prayers for my health.> > Love and Aloha,> Judy (OH) IPF 11/06 TX 8/07> Quote Link to comment Share on other sites More sharing options...
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