Hi Donna, Sorry to hear about your kidney failure. Hopefully you should look into a kidney transplant, but with having CML they probably won't do it. However, my thoughts are that if you reach PCRU or MMR for a length of time then maybe you could be a candidate.
I hope and pray that eventually you will be able to get a kidney transplant. Never say "never" miracles do happen. By the way, I did try perinatal dialysis several times but the catheter failed each time and I had to have it removed. They mentioned that since I had my spleen surgically removed 24 years ago it left scarring in my perinatal membrane and that is probably why it won't work. I am now on several kidney transplant lists so hopefully it will come soon. I wish you health and happiness. 18's Marty On Sun, Aug 18, 2013 at 4:58 AM, Donna Strange <[email protected]>wrote: > I, too, have end stage renal disease and am on peritoneal dialysis. I can > imagine of I were in your situation and my fistula was blending out or > conyr having the same thought process as you. It's only human. > Thankfully it was just your inr and not cml. > > Sent from my iPhone > > On Aug 17, 2013, at 5:20 PM, Marty Gartenberg <[email protected]> wrote: > > Hi Jeanie, > > I would like to tell you and everyone else a story about me and what > recently happened to me. > > As you know, I am on dialysis and am also on Warfrin, a blood thinner. In > order to get my dialysis they have to stick two large gauge needles #14 > gauge into my arm and into my access point that is under the skin. > > Once my dialysis is finished they remove the needles and I have to hold > several gauze pads over my access points for about five minutes in order to > stop the bleeding. > > Well, this past Monday the bleeding could not be stopped from my arterial > part of the port called the fistula. I had to hold it on for more then an > hour but it still wouldn't stop bleeding so they put a special clamp over > the access points and left it there for another half hour. When they > removed it the blood just started spurting out again. > > The clamp was put on once more and it finally stooped bleeding. I went > home with the clamp still on and had dinner. After I finished my dinner I > decided to remove the clamp and it again started spurting out again all > over the kitchen floor. I then put the clamp on again and went to the > hospital for further treatment. > > I'm telling you this story for a reason that doesn't as yet make any sense > but you will understand more... > > When I arrived at the hospital that took a CBC blood test and told me that > it would be ready in an hour. Now here is where my mind took over. Because > my bleeding was very severe I thought that my platelets may be low. This is > exactly what happened to me twenty three years ago and I was then diagnosed > with Leukemia. > > So with this happening my mind started in with what if my Leukemia has > returned, and I started sweating until the results came back. > > Now you all know me, but I am still human just like all of the rest of you > but I usually know how to control my mind and feelings and thoughts. > Emotions are very powerful if you can't or won't control them, but this > time it just brought back some terrible thoughts because of what I once > went through. I always try to discipline myself through most things but > sometimes just being human it is something that we must all try to deal > with. > > So Jeanie and all of the rest of you, whenever your waiting for the > results of any tests I want you to try and remember that your all human and > sometimes your going to worry about the test results until you get them > back. It is only then that you will have to deal with them, and you will > whether good or bad. > > In my case the bleeding was caused by to high an INR level was in my blood > (to thin from the doses of Warfren). The bleeding finally stoped by itself > after four more hours and I was discharged from the hospital after 1:30 AM > and we went home. > > I started eating more dark greens and some Broccoli and asparagus and > lessened the dose of Warfren after speaking to my doctor. > > When I went back on Wednesday for my four hour dialysis treatment and once > it was finished the bleeding stooped within five minutes, as it usually does > > You all remember what I always say, your mind does control your body. CML > is a strange disease it does effect both your mind and body. Even after > these past twenty three years for me, and I have learned to be able to > control my mind. > > I feel very close to all of you, or I wouldn't have told you this personal > story. > > We must live with what we have, and the key word in that statement is live. > > Remember that we are all human. > > 18's > > Marty > > > On Sat, Aug 17, 2013 at 11:50 AM, <[email protected]> wrote: > >> ** >> Hi and I did almost the same on Tasi. I never reached PCRU until I was >> put on Sprycel. This happened almost 6 years after I was dx. >> I saw so much of my doctor the nurse told me I should put a bed in the >> office. >> I have scars in my arms where they took blood so often. >> I just reached the stage of going every 6 months about 6 months ago, but >> I do have my blood checked by my primary doctor often. >> It's funny about our blood test, we want to see them but we are afraid of >> the results. I am still afraid after all these years. I know how you can >> be going along well and then all of a sudden everything goes out of whack. >> Faith and pills get me through each day. Good luck and blessings everyone. >> Jeanie<3 >> >> >> In a message dated 8/15/2013 8:44:21 A.M. Pacific Daylight Time, >> [email protected] writes: >> >> >> I was on Tasignia until it stopped working and had blasts so they >> admitted me to hospital and started oral ponatanib 45mg daily. Took 2 >> solid months of hospitalization for my neutrophils to come down and >> platelets to go up. Got a unit of blood almost every single day and >> sometimes two, and would get at least one bag platelets per day and often 3 >> or more. Finally my numbers started to pick up and they let me go home. >> I havn't felt what I would call "well" since being on this drug but at >> least they are saying I am in Hematological remission, not molecular but >> that is my goal. I see my hematologist every week for labs to determine if >> I need another unit of red blood cells and usually my hemologin has been >> running around 8.5 which means I get a unit of blood. So on Tuesdays i go >> for labs and then return on Wednesdays for blood if needed. This sure >> beats the alternative - not being well. >> >> On Gleevac I experienced eye bleeds. >> >> *From:* Susan Zimmerman <[email protected]> >> *To:* [email protected] >> *Sent:* Wednesday, August 14, 2013 4:49 PM >> *Subject:* Re: [CMLHope] Ponatinib >> >> Thanks Maggy for answering. I'd like to hear more about how you are >> doing on this drug. Not sure which one they will put me on after >> determining why I am having brain bleed tendencies. >> Was on gleevec for 2 yrs 3 mos, on nothing now for six years because of >> brain bleeds. Numbers were going up upon last check, tried 15 days of >> tasigna and had an indication again of brain bleeding. Sept. 4th going to >> Northwestern Univ. again to try to determine the cause. >> >> Blessings, >> Susan F. Zimmerman >> >> -----Original Message----- >> From: [email protected] <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Tue, Aug 13, 2013 2:36 am >> Subject: Re: [CMLHope] Ponatinib >> >> >> >> Yes, been on this drug since around first week of June. 45 mg I >> believe. Was hospitalized for almost two months while the drug did its >> thing. >> >> *From:* John Barrons <[email protected]> >> *To:* CML Hope <[email protected]> >> *Sent:* Monday, August 12, 2013 10:53 AM >> *Subject:* [CMLHope] Ponatinib >> >> I have had CML for almost 14 years now. I failed gleevec and sprycel and >> am now on ponatinib. Is there anybody in this group who is on this drug? >> >> Sent from my iPad >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to [email protected] >> To unsubscribe from this group, send email to >> [email protected] >> For more options, visit this group at >> http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to [email protected]. >> For more options, visit https://groups.google.com/groups/opt_out. >> >> >> >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com/ >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to [email protected] >> To unsubscribe from this group, send email to >> [email protected] >> For more options, visit this group at >> http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to [email protected]. >> For more options, visit https://groups.google.com/groups/opt_out. >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com/ >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to [email protected] >> To unsubscribe from this group, send email to >> [email protected] >> For more options, visit this group at >> http://groups.google.com/group/CMLHope >> --- >> You received this message because you 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http://cmlhope.com >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to [email protected] >> To unsubscribe from this group, send email to >> [email protected] >> For more options, visit this group at >> http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to [email protected]. >> For more options, visit https://groups.google.com/groups/opt_out. >> > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email 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