Oh procrit, you have helped me along the way,
Giving me enough energy to feel okay.
I guess you can say you have given me my life back,
even though your sting is like a bee attack!
Oh procrit, you help me make enough red blood cells,
Because my kidneys want to shut down & fail.
At times it is quite funny you see,
I have this love/hate relationship with thee!
Oh procrit, my kidneys would be lost without you,
I can't wait to get a transplant so that I may say adieu!
This Ode was brought to you by a very silly moment. I don't take responsibility for my mood swings. :) If you want serious information on what procrit injects have done for me...go here!
Showing posts with label procrit injections. Show all posts
Showing posts with label procrit injections. Show all posts
Thursday, May 21, 2009
Tuesday, December 30, 2008
Another Update on Sjogrens and Kidney Lab Work
First, I believe the cellcept is bringing my sjogren titers down. I will hear back from MUSC next week on my course of action. I think they will want to increase my dosage. My ANA titer went from 1:1280 to 1:320 ....Pretty good! My Rhuematoid factor was over 2200 and now it stands at 225.8. SSA is 709 SSB is 874. I am not sure what these were previously. Everything is still high, but better!
Now....my hemoglobin is down to 10.0 and my hemacrit is 29.8. LOW!! So my procrit injections are back to once a week. I am dragging my butt from lack of energy. This is why I hav not posted as much lately. I know I will feel better in 2 or so weeks. They are checking my iron levels in 4 weeks too...I may also have to supplement the procrit injections with iron.
Now....my hemoglobin is down to 10.0 and my hemacrit is 29.8. LOW!! So my procrit injections are back to once a week. I am dragging my butt from lack of energy. This is why I hav not posted as much lately. I know I will feel better in 2 or so weeks. They are checking my iron levels in 4 weeks too...I may also have to supplement the procrit injections with iron.
Tuesday, November 18, 2008
What Procrit Injections Have Done For Me
I have noticed a great deal of hits on this blog for Procrit Injections....so I thought I would write a post on my personal experience with this drug. Procrit or Arnasep is a man-made drug that comes from human plasma. This is why it can be costly.
Epoetin (eh-POH-ee-tin) is a man-made version of human erythropoietin (EPO). EPO is produced naturally in the body, mostly by the kidneys. It stimulates the bone marrow to produce red blood cells. If the body does not produce enough EPO, severe anemia can occur. This often occurs in people whose kidneys are not working properly. Epoetin is used to treat severe anemia in these people.
I use it for the obvious end stage renal disease I am going through. I know many cancer patients on chemotherapy take it as well. I will list the pros and cons that I personally have come across.
PROS
1) I feel like a new person.
2) Procrit lets me play with my kids.
3) I can hold a normal 40 hour job still that I love.
4) It makes me feel like a super hero at times.
5) ENERGY BOOSTER
*** As you can see all these relate to a better quality of lifestyle.
CONS
1) Procrit is costly. Having good health insurance is essential.
2) It took about 5 injections (5 weeks) before I started feeling great.
3) Procrit stings when entering the body, BUT if you warm it to room temp just before injecting it...it is not bad at all.
4) I vomited twice initially when I got the first few injections, but now I have no problems.
5) It is an injection with a needle just under the skin and I HATE needles. I will say that honestly as scared as I am about needles it really isn't bad. In fact, most of the time I don't even feel the needle going into my lower belly, it is the procrit I feel.
Despite the cons, my overall assumption is that Procrit is my life line and it is an unbelievable drug that has given me my life back. If you are getting ready to start procrit injections educate yourself and take a deep breath. In a few short weeks you will feel much better.
Epoetin (eh-POH-ee-tin) is a man-made version of human erythropoietin (EPO). EPO is produced naturally in the body, mostly by the kidneys. It stimulates the bone marrow to produce red blood cells. If the body does not produce enough EPO, severe anemia can occur. This often occurs in people whose kidneys are not working properly. Epoetin is used to treat severe anemia in these people.
I use it for the obvious end stage renal disease I am going through. I know many cancer patients on chemotherapy take it as well. I will list the pros and cons that I personally have come across.
PROS
1) I feel like a new person.
2) Procrit lets me play with my kids.
3) I can hold a normal 40 hour job still that I love.
4) It makes me feel like a super hero at times.
5) ENERGY BOOSTER
*** As you can see all these relate to a better quality of lifestyle.
CONS
1) Procrit is costly. Having good health insurance is essential.
2) It took about 5 injections (5 weeks) before I started feeling great.
3) Procrit stings when entering the body, BUT if you warm it to room temp just before injecting it...it is not bad at all.
4) I vomited twice initially when I got the first few injections, but now I have no problems.
5) It is an injection with a needle just under the skin and I HATE needles. I will say that honestly as scared as I am about needles it really isn't bad. In fact, most of the time I don't even feel the needle going into my lower belly, it is the procrit I feel.
Despite the cons, my overall assumption is that Procrit is my life line and it is an unbelievable drug that has given me my life back. If you are getting ready to start procrit injections educate yourself and take a deep breath. In a few short weeks you will feel much better.
Friday, November 7, 2008
Today is the DAY!!!!!
I receive word from my transplant coordinator that my case is up for review this morning at MUSC. I should know by this afternoon if I am put on the national transplant list. Everything looks favorable, but you never know. I know a co-worker's father was turned down by MUSC, Emory, and was finally taken by a hospital in Jacksonville, FL. He is doing well with his lung transplant. I believe it has been over 3 years for him.
I got great news about the cost of my procrit injections. I now can get 6 injections for $10.00!!!!! YES, ONLY 10 DOLLARS! I was paying $100.00. I just about jumped over the counter and kissed the pharmaceutical tech. I also found out that with my new insurance at work that my approximate out of pocket amount for post transplant meds should be $105.00 a month. Can you believe it??? God is good. It looks like medicare will not be needed by me because I will have to pay them $100.00 a month for them to pick up about $75.00 a month in co-pays. I know it sounds confusing....but basically I would be spending an extra $25.00 or so a month needlessly if I got medicare. (I am talking about the prescription part...not the one that helps with medical bills) It is baffling and I am still learning. So make sure you do your own research if you are in a similar situation.
I will post later today when I hear from MUSC. Keep your fingers crossed!
***UPDATE***
I am not accepted yet. They want to check one more resource to make sure that the timing of the transplant doesn't interfere with the Sjogrens!!??????!! I should know an answer Tuesday. I am not a happy camper.
I got great news about the cost of my procrit injections. I now can get 6 injections for $10.00!!!!! YES, ONLY 10 DOLLARS! I was paying $100.00. I just about jumped over the counter and kissed the pharmaceutical tech. I also found out that with my new insurance at work that my approximate out of pocket amount for post transplant meds should be $105.00 a month. Can you believe it??? God is good. It looks like medicare will not be needed by me because I will have to pay them $100.00 a month for them to pick up about $75.00 a month in co-pays. I know it sounds confusing....but basically I would be spending an extra $25.00 or so a month needlessly if I got medicare. (I am talking about the prescription part...not the one that helps with medical bills) It is baffling and I am still learning. So make sure you do your own research if you are in a similar situation.
I will post later today when I hear from MUSC. Keep your fingers crossed!
***UPDATE***
I am not accepted yet. They want to check one more resource to make sure that the timing of the transplant doesn't interfere with the Sjogrens!!??????!! I should know an answer Tuesday. I am not a happy camper.
Friday, September 12, 2008
Procrit is now....drumroll please....
Every other week! After 12 weeks of procrit injections we are now trying a schedule of getting one every two weeks and see what my numbers do. My hemoglobin was 11.6 and my hemacrit was 33.7. Hopefully, it will be OK and I won't feel too tired by the end of week 2. We will see....
I didn't realise how bad I felt 3 months ago. Looking back now I am amazed at the strength I did have. I know I am strong and I had support from my family and friends that helped me carry through the bad days that seemed to have been endless. I still have an occasional bad day or two, BUT not like I did before. I can do more, but have to pace myself and listen to my body.
I have my transplant class next Thursday. My sister is driving down from Tenneesee to go with me. My husband and Mom are planning on going too. I will have a lot to update at that time.
A man named Steve I know who had a kidney/pancreas transplant 7 weeks ago is doing great. He is meeting with SC officals and the head of the transplant at MUSC to discuss raising money for research to help prolong an organ's life. Also, to build a house for people who have transplants where you can rent a room for minimum $$$. It is going to be modeled like a Ronald McDonald House, but for transplant patients and their families. I asked him if there was some way I can help him reach his goals because I would LOVE to be part of this.
I didn't realise how bad I felt 3 months ago. Looking back now I am amazed at the strength I did have. I know I am strong and I had support from my family and friends that helped me carry through the bad days that seemed to have been endless. I still have an occasional bad day or two, BUT not like I did before. I can do more, but have to pace myself and listen to my body.
I have my transplant class next Thursday. My sister is driving down from Tenneesee to go with me. My husband and Mom are planning on going too. I will have a lot to update at that time.
A man named Steve I know who had a kidney/pancreas transplant 7 weeks ago is doing great. He is meeting with SC officals and the head of the transplant at MUSC to discuss raising money for research to help prolong an organ's life. Also, to build a house for people who have transplants where you can rent a room for minimum $$$. It is going to be modeled like a Ronald McDonald House, but for transplant patients and their families. I asked him if there was some way I can help him reach his goals because I would LOVE to be part of this.
Wednesday, August 27, 2008
FINALLY....news about MUSC
I have a kidney transplant class scheduled for Sept. 18th. It takes about 3 hours. It is the first step and is mandatory to attend if you are getting a transplant with MUSC. They recommend a family member to go with you. The good news is that I only have to travel about 30-40 minutes instead of 4 hours to this class. Hooray!
I took another dose of Procrit. Since I am feeling better...I am having a hard time taking these. I really didn't want to yesterday. I have to tell myself that the reason I feel good is because of these injections.
I have met up with a gentleman named Lightning who had a liver transplant by MUSC. He has been great about answering questions...he has even given me the email of a friend of his who just went through a kidney/pancreas transplant at MUSC a month ago. Go visit his story if you get the chance. It is great!
I took another dose of Procrit. Since I am feeling better...I am having a hard time taking these. I really didn't want to yesterday. I have to tell myself that the reason I feel good is because of these injections.
I have met up with a gentleman named Lightning who had a liver transplant by MUSC. He has been great about answering questions...he has even given me the email of a friend of his who just went through a kidney/pancreas transplant at MUSC a month ago. Go visit his story if you get the chance. It is great!
Wednesday, August 13, 2008
Patience, Procrit, and Pondering.....
*finger tapping*
I have learned something about myself....I am not a patient person at times. I am STILL waiting on a phone call from MUSC. I know that TECHNICALLY they have until the end of the week to call me before I call my MUSC nephro next week to remind them to call me. The bad thing is that I know through the next 6 or so months my patience will be tested over and over again.
I had my eighth injection of procrit last night. I cannot stress how much it has helped me. I see the vampires tomorrow for a full blood work-up. Maybe I can go to every other week on the injections. I see both the rhueme and nephro next Tuesday. It will be interesting what they will say from my visit to MUSC.
I sit pondering a good bit....playing out the scene that I will be one of the fortunate ones who find a quick and almost perfect match to my kidney. That part doesn't scare me so much....the actual surgery doesn't either....it is the 3 months or so after the transplant. It reminds me of my high risk pregnancies....I need to get through the first trimester and the chances of my body rejecting it is much less. I am nervous because I know I have very high ANA, SSA, and SSB antibodies in me. BUT...I tell myself the transplant team knows how to handle this. They may not have dealt with Sjogrens and kidney failure but they are very familiar with Lupus and kidney failure....and that is an autoimmune disease. I hope MUSC tells me that they have dealt with this before and have had favorable outcomes.
Wednesday, July 30, 2008
Countdown to MUSC...
I will be traveling tomorrow to MUSC with hopes of good news in the treatment of my CKD related to Sjogrens. My kidneys are operating at 16% right now. They may not have any news for me, but at least I will know where I definitely stand. I will keep you all posted when I return. It probably will not be until Monday, August 4th. My Birthday!
I had another round of procrit last night. Funny thing is....I think by Monday I feel my energy level go down a bit....it's probably in my head or maybe just Monday's in general! I do love the energy it provides for me. We may switch to Arnasep. I have heard that you only need to take that once a month. It is the newer of the 2 drugs. I also have a question about my pain relief drug called Ultram......I love the stuff, but when Hubs and I looked at it's warning online it claimed to not use if you have severe kidney impairment. SO....I haven't taken but 3 pills the past 5 weeks and that was when I felt so bad I could barely move.
Talk to you soon!
***Update***
Ohhhhh I hate dealing with insurance and billing/coding specialists!! I was called a couple of hours ago by a lady in the MUSC nephrology dept. and she said that I was NOT able to have my appointment because I wasn't referred by a primary physician???? I told her my nephrologist referred me. She got a little snappy. You currently don't have a primary physician? (NO LADY! I SEE SO MANY SPECIALISTS AND ALL OF THEM ARE INTERNAL MEDICINE DOCTORS.....I WORK FOR A HOSPITAL THAT GIVES FREE MEDICAL VISITS AND WRITES PRESCRIPTIONS FOR URGENT-LIKE CARE VISITS TO THEIR EMPLOYEES....WHO CAN AFFORD MORE DOCTOR BILLS???)She said that I needed to call my insurance company and get it pre-authorized. (meaning that my insurance will pay) I call my insurance company and they said under "special circumstances" a nephrologist can refer another nephrologist. I had to get my nephrologist to call and get it pre-authorized. I am waiting on a phone call. I think the girls at my regular nephrologist office can make all this happen. They are GREAT! They really help me out and was very understanding when I started my procrit injections. If they can't.....I think we'll just bite the bullet and pay for the visit out of pocket.
Everything is a go for tomorrow now. The girls at my office said that they called my insurance company and NO precert was needed. They called MUSC too. Everything is straightened out....I hope it stays that way tomorrow! :)
I had another round of procrit last night. Funny thing is....I think by Monday I feel my energy level go down a bit....it's probably in my head or maybe just Monday's in general! I do love the energy it provides for me. We may switch to Arnasep. I have heard that you only need to take that once a month. It is the newer of the 2 drugs. I also have a question about my pain relief drug called Ultram......I love the stuff, but when Hubs and I looked at it's warning online it claimed to not use if you have severe kidney impairment. SO....I haven't taken but 3 pills the past 5 weeks and that was when I felt so bad I could barely move.
Talk to you soon!
***Update***
Ohhhhh I hate dealing with insurance and billing/coding specialists!! I was called a couple of hours ago by a lady in the MUSC nephrology dept. and she said that I was NOT able to have my appointment because I wasn't referred by a primary physician???? I told her my nephrologist referred me. She got a little snappy. You currently don't have a primary physician? (NO LADY! I SEE SO MANY SPECIALISTS AND ALL OF THEM ARE INTERNAL MEDICINE DOCTORS.....I WORK FOR A HOSPITAL THAT GIVES FREE MEDICAL VISITS AND WRITES PRESCRIPTIONS FOR URGENT-LIKE CARE VISITS TO THEIR EMPLOYEES....WHO CAN AFFORD MORE DOCTOR BILLS???)She said that I needed to call my insurance company and get it pre-authorized. (meaning that my insurance will pay) I call my insurance company and they said under "special circumstances" a nephrologist can refer another nephrologist. I had to get my nephrologist to call and get it pre-authorized. I am waiting on a phone call. I think the girls at my regular nephrologist office can make all this happen. They are GREAT! They really help me out and was very understanding when I started my procrit injections. If they can't.....I think we'll just bite the bullet and pay for the visit out of pocket.
Everything is a go for tomorrow now. The girls at my office said that they called my insurance company and NO precert was needed. They called MUSC too. Everything is straightened out....I hope it stays that way tomorrow! :)
Wednesday, July 23, 2008
Fresh Clean Sheets & A New Quilt!
There is something about fresh clean sheets and a new quilt that makes me smile and feel good! I got this quilt a couple weeks ago while visiting my sister up in Tennessee. It was a present to myself. My mom and sister bought me 2 pillow shams and 2 throw pillows to complete my set as an early birthday present.
Do you ever think about the little things that make us happy in our everyday lives?
Driving through town and hitting all the lights on green....
The sound of your children laughing....
The smell of fresh flowers....
A nice thunderstorm on a lazy summer day....
A pina colada or strawberry daiquiri....
Hearing a song over the radio that brings back a good memory from long ago....
AND....
Fresh clean sheets and a new quilt!!!!
On another note...hubs did another injection of procrit yesterday...this makes my fifth. WHAT A DIFFERENCE! I can't say I am ready to do cartwheels, but I definitely can get up in the morning and feel as though I actually slept. I still love to get naps on the weekends and at times I need to go to bed early. Anyone who is afraid to get procrit injections due to chronic kidney disease because of Sjogrens....it is soooooooooooo worth it! The needles do not hurt at all...I PROMISE! The medicine does sting a bit....but let it sit out at room tempature for about 30-45 minutes. That really helps. MUSC is next week and I can't wait to share my experiences with all of you and see what they think needs to be done. Of course the major thing is the affect Sjogrens is having on my kidneys....but all those other lovely symptoms of Sjogrens will be addressed too.
Speaking of sharing experiences.... look at my other blog 2 Lil Pumpkins...you will see my 2 most favorite little men eating watermelon! It will make you smile!
Tuesday, July 15, 2008
Charleston South Carolina
I love Charleston. I haven't been there in almost 4 years even though I live less 4hours away. I can't wait til the end of the month when I go to MUSC and stay for an extra day to play. I have visions of taking a carriage ride at dusk through the cobblestone streets in the historic district. Also, eating at a fine trendy establishment with hubs and staying at a very quaint Bed & Breakfast that has a turn down service that places chocolates on my pillow. Oooohhhh. Unfortunately, it may be the Red Roof Inn across the river in Mount Pleasant. Even that is a whopping $95.00 a night plus a zillion in taxes. I am going to continue to search for that Bed & Breakfast....all the way up to the evening before to get a good deal. At this point even if we made reservations at the Best Western in historic Charleston it goes for $189.00 per night. Whew! I'm not cheap......just frugal! Before the kids, Hubs and I stayed at The Ansonborough Inn .Very nice....my kind of place...."pre-kids". Don't get me wrong....my two little munchkins are worth the sacrafice of staying in luxury. I love them with all my heart, it just would be nice to stay somewhere like this again with Hubs.
Update on Procrit.... Hubs did my injection for me. He did very well! I am really feeling the affect of the Procrit....never thought that I would love an injection in my belly. LOL Anyone who knows me and needles will get a kick outta this because of my phobia of them. Procrit = my life coming back!
Tuesday, July 8, 2008
Update on MUSC
Well, at the end of the month I will be going to MUSC (Medical University of SC). I am happy to have specialists on top of the field to take a look at me. I will see a nephrologist and rhuemetologist. Hubs and I will take advantage of being in Charleston, SC and spend an extra day to play around. I will take pictures and post!
The second shot of procrit did make me sick about 8 hours after the injection. It was fast and only one time. BUT...I have to say that I feel like I have a little more energy. I am still exhausted, but at least I don't feel like I want to cry just because I am so tired. :)
I get my third shot of procrit today after work. Hubs still doesn't feel 100% like he can do it. He is so strong and anyone that knows him laughs when I tell them how much he HATES needles. He gets light-headed....even has passed out with bloodwork. And I have a phobia of sticking myself! I wonder if such a phobia exists.....I have it!!!
I wanted to share the Spoon Story that I came across. It makes perfect sense to all of us with a "silent disease."
The second shot of procrit did make me sick about 8 hours after the injection. It was fast and only one time. BUT...I have to say that I feel like I have a little more energy. I am still exhausted, but at least I don't feel like I want to cry just because I am so tired. :)
I get my third shot of procrit today after work. Hubs still doesn't feel 100% like he can do it. He is so strong and anyone that knows him laughs when I tell them how much he HATES needles. He gets light-headed....even has passed out with bloodwork. And I have a phobia of sticking myself! I wonder if such a phobia exists.....I have it!!!
I wanted to share the Spoon Story that I came across. It makes perfect sense to all of us with a "silent disease."
Monday, June 30, 2008
Second Round of Procrit!
I am actually looking forward to it. Last week I was loathing the idea and this week I can't wait to me stabbed by a needle in the belly! I guess I am ready for this burst of energy. It could take up to 4 injections. I hope not.
I am going to MUSC (Medical University of SC) in Charleston the end of the month. I have an appointment with a Rhuematologist and should get an appointment with a Nephrologist too. Tomorrow, I have an appointment with my hometown Nephrologist to discuss how far along my kidney disease is that is caused by Sjogrens. I know I am in stage 4, but does that mean I have a few months or years until dialysis. What are my chances to stop this CKD if my Sjogrens goes into remission?? Say a prayer that I still have hope. Thanks!
I am going to MUSC (Medical University of SC) in Charleston the end of the month. I have an appointment with a Rhuematologist and should get an appointment with a Nephrologist too. Tomorrow, I have an appointment with my hometown Nephrologist to discuss how far along my kidney disease is that is caused by Sjogrens. I know I am in stage 4, but does that mean I have a few months or years until dialysis. What are my chances to stop this CKD if my Sjogrens goes into remission?? Say a prayer that I still have hope. Thanks!
Thursday, June 26, 2008
An Amazing Little Four Letter Word....
HOPE
It can really change the way you feel. I was depressed earlier this week and now I actually feel like I am becoming my old self again. The procrit injection was not bad at all. The nurse showed my hubs how to do it. We decided the belly was the best place for me. I didn't feel the needle hardly at all, but when she was 1/2 way through the injection I could feel the burning sensation. It felt like I had a fireant bite for about 10 minutes. I don't feel a burst of energy as of yet and I was told it could take up to 4 injections.
My GFR rate is 16. That is a bit scary, but I will do whatever I need to do to keep it from dropping to 15. (15 is when dialysis is a huge possiblity). My creatine is 3.35 My hemoglobin was 9.6. We have an appoinment on July 1st with my nephrologist and hubs officially gives me my first injection of procrit at the office. He had to look away for a few seconds yesterday...he hates needles. :)
I am looking forward to this burst of energy to come. It claims to improve your way of life.
It can really change the way you feel. I was depressed earlier this week and now I actually feel like I am becoming my old self again. The procrit injection was not bad at all. The nurse showed my hubs how to do it. We decided the belly was the best place for me. I didn't feel the needle hardly at all, but when she was 1/2 way through the injection I could feel the burning sensation. It felt like I had a fireant bite for about 10 minutes. I don't feel a burst of energy as of yet and I was told it could take up to 4 injections.
My GFR rate is 16. That is a bit scary, but I will do whatever I need to do to keep it from dropping to 15. (15 is when dialysis is a huge possiblity). My creatine is 3.35 My hemoglobin was 9.6. We have an appoinment on July 1st with my nephrologist and hubs officially gives me my first injection of procrit at the office. He had to look away for a few seconds yesterday...he hates needles. :)
I am looking forward to this burst of energy to come. It claims to improve your way of life.
Monday, June 23, 2008
Bitterness and Procrit Injections
***UPDATE***
Go to my new outlook on Procrit and what it has done for me. Click Here!
I hate the way I am feeling right now....I mean besides the obvious fatigue, gritty dry eyes in the morning, a mouth so dry that it is hard to swallow a biscuit, foggy brain syndrome, muscle tenderness, and the nausea that comes and goes. I feel bitter and angry about my Sjogrens. I want to know why it is also attacking my kidneys. I often ask the classic question...WHY ME?
I often feel guilty that I seem to be bathing in self-pity. Even though I have been diagnosed with SS for almost 4 years and misdiagnosed with Lupus...I think it is starting to sink in that I don't feel good. I work with cancer patients a good bit with my job and I see what they go through. The looks on their faces when they just had chemo can be heartbreaking. Some of them have the best attitudes and they are at peace with their illness. I want that. I want to be the one that everyone says that I have a great attitude towards my stage 4 kidney disease. I want to feel like I can beat this! I don't want to go into dialysis. Everyone constantly reminds me that dialysis isn't a death sentence. Why do I feel like it is? I am only 36 and I have 2 small toddlers that I want to be active with. I don't want them to think their mommy doesn't feel good!
I start Procrit injections tomorrow. I don't know if it will once a week or bi-weekly. My husband is going with me. He'll have to give me the shots. I can't do it! (I couldn't even prick my own finger to check my sugar when I had gestational diabetes). Thank goodness my doctors have got my insurance to pay for the injections. I have a high co-pay of $100.00 for eight injections. My insurance originally said it wasn't covered. I heard that each injection can cost $1400.00-$2000.00 a piece!!!
Go to my new outlook on Procrit and what it has done for me. Click Here!
I hate the way I am feeling right now....I mean besides the obvious fatigue, gritty dry eyes in the morning, a mouth so dry that it is hard to swallow a biscuit, foggy brain syndrome, muscle tenderness, and the nausea that comes and goes. I feel bitter and angry about my Sjogrens. I want to know why it is also attacking my kidneys. I often ask the classic question...WHY ME?
I often feel guilty that I seem to be bathing in self-pity. Even though I have been diagnosed with SS for almost 4 years and misdiagnosed with Lupus...I think it is starting to sink in that I don't feel good. I work with cancer patients a good bit with my job and I see what they go through. The looks on their faces when they just had chemo can be heartbreaking. Some of them have the best attitudes and they are at peace with their illness. I want that. I want to be the one that everyone says that I have a great attitude towards my stage 4 kidney disease. I want to feel like I can beat this! I don't want to go into dialysis. Everyone constantly reminds me that dialysis isn't a death sentence. Why do I feel like it is? I am only 36 and I have 2 small toddlers that I want to be active with. I don't want them to think their mommy doesn't feel good!
I start Procrit injections tomorrow. I don't know if it will once a week or bi-weekly. My husband is going with me. He'll have to give me the shots. I can't do it! (I couldn't even prick my own finger to check my sugar when I had gestational diabetes). Thank goodness my doctors have got my insurance to pay for the injections. I have a high co-pay of $100.00 for eight injections. My insurance originally said it wasn't covered. I heard that each injection can cost $1400.00-$2000.00 a piece!!!
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