So today is Christmas Eve. Since early this morning, mom's blood pressure was low. At 9:30 this morning, her blood pressure was so low, that it wouldn't even register. The second time taking it, it registered at 67/47. She passed out two times this morning. Luckily my dad was by her side. The first time she was walking to the bathroom and dad was able to catch her and set her on the toilet. She didn't totally pass out, she opened her eyes almost immediately. The second time she was right by the bed, so dad gave her a little push and she landed in the bed, where again she opened her eyes right away. She stayed in bed all day and was not able to go to the family gathering tonight. When they called the nurse, they told her to drink some fluids and to eat some salt. Since she can't eat pretzels, she just sucked the salt off them. The majority of the day her blood pressure was extremely low. 80/40, but SLOWLY rose. She probably should've gone to the hospital, but she is a stubborn one. "I will NOT go to the hospital on Christmas Eve!!!!" She said she would only go if she passed out and we took her when she passed out. I must say I was terrified all day. I was working so I wasn't around. I did stop by after work, and when I saw her she looked absolutely horrible. She was still in bed, and I took her blood pressure. 87/60, still not that great. I pulled up the skin on her hand and it took about 8 seconds for it to return to normal, which means she was dehydrated. She can't really drink fluids, but I forced her to. She insisted that the family all go ahead and go to the family function, but I didn't like the thought of her being alone. She said to me, I can call you if I don't feel well. I still didn't like this, cause what if she passed out again. So my dad stayed behind, and we were going to rotate someone being there. So I left. An hour later I looked up and saw my dad standing there, and I got nervous. I ended up going home 20 minutes later to check on her. I caught her downstairs letting the dogs out. Her color had returned and she seemed perkier. I took her back upstairs and her blood pressue was substantially higher. 151/57. Since my family is made up of a lot of doctors I was sent back to the party with a question to ask....Could she take a pain pill now, because she wasn't able to take one all day. (she did take one this morning, but she got sick and threw up all her medicines. The doctors told her not to take any until her blood pressure rose. My Uncle said it would be ok, so I called her immediately and told her it was ok. Hopefully her leg would feel a bit better.
Her leg does look much much better. The swelling is down noticably. And the redness has subsided a bit. I think the antibiotics are working, however the doctor prescribed 1 pill 2x a day for 14 days. Her Kidney Nurse today say the skin cancer doctor didnt know, but Renal Patients/dialysis patients can't take antibiotics like that. Way too high. So they told her only to take 1 a day. I hope she is able to get some sleep tonight and will be able to make it to her side of the family's gathering tomorrow for Christmas. If not, I shall stay home with her. At least the whole family is here, including the grandkids. This is the most important Christmas I've ever experienced. I am so happy my brother and his family were able to come. I hate to think this might be her last Christmas.
Thursday, December 24, 2009
Tuesday, December 22, 2009
#3 More workup and a big jug of urine.
So yesterday I had to do a 24 hour urine collection so they could see the function of my kidneys and how they process protien. I arrived at the hospital at 8:30 this morning to turn in my pee. When I get there and hand them my 1500 cc's of pee, they hand me a little cup and ask me to pee in it. It struck me as odd after handing them that big jug. heheh. Then I waited around in a room for about 20 minutes, and a nurse came in to draw my blood. 18 viles of it. I wasn't allowed to eat beforehand, so I was a bit nervous. But I did fine, no fainting. I wonder if there is any blood left inside of me. After that, it was off to meet with the social worker.
What did I learn talking to the social worker? I learned that my blood work and and urine results will be back early next week and in plenty of time for the next meeting the whole transplant team has every tuesday. Because of the Holidays, the next presentation meeting isn't until January 5th. Every Tuesday all the nurses and doctors get together and present each case of recipient and possible donor, talk about them, check out stats and results, and have 1 of 3 results. Either everything looks good, and we are approved, there might be some wacky results and/or further testing is requested, or we are denied. I was upfront about my tobacco use (yes I am in the process of quitting) but have messed up a bit recently. If we are passed then I will have more work up done. I originally was going to have a CT Scan, Angiogram, Pulminary Function test, and chest xray today, but cause of the holidays they decided to wait. I guess I will hear more on January 6th. I just had a chest xray and pulminary function test not too long ago at the VA, which yielded excellent results. I might be able to skip that step. If we are moved forward then we are entered into the Paired Donation Network or the United Network for Organ Sharing aka UNOS They do what is called Match Runs every couple of months. This means they take all the different cases of people and pairs and put them in a computer and use a fancy program to organize a big transplant swap. Sometimes they are small, but the larger collaborative transplants seem to be the new big thing in the Donation World.
The social worker asked me lots of questions about my life, work, family, etc. And also explained a lot about the actual surgery which I already knew about because I have done my research. I think the technical term for what happened with the social worker is PsychoSocial Evaluation.
I also learned that if we are matched into a massive transplant effort, that any one person can back out at ANY time up until the time that the anesthesia is administered. If someone backs out, the WHOLE transplant is called off, regardless if it's 4 or 50 people This is a bit scary, but I think if someone was going to back out, they wouldn't wait till this far along. But it could happen.
I had to read and sign a 7 page consent form today to be a living kidney donor. I passed all my evaluations with flying colors. The social worker told me I was the most informed patient she has ever dealt with.
That is all for now. I was advised of two more websites that I should check out.
www.livingdonorassistance.org and ustransplant.org. Haven't checked them out yet. But I
thought I would share them anyways.
Oh I almost forgot......Afterwards, I took my mom to the doctor to have her leg checked out. She has MOHS surgery a week ago on her leg that went almost down to the bone. She was complaining it hurt worse than before and her leg was so SEVERELY swollen. We arrived with no appointment, and were let back immediately. They took the miles of bandages off, and when they did you could smell it. GROSS, it was fire engine red, gross, pussy, and her skin graft had been eaten away. So it was nastily infected. I wanted to take a picture of it, but she wouldn't let me. I told her it would help describe her story better on here and might help someone prepare for seeing it themselves in real life when it happens to their loved ones. I wasnt ready to see it. She hit me with her crutch. so no picture. She described it best when she said it looked like a dog got ahold of her leg and started eating it like it was a raw steak. A quit script of Cipro antibiotic, 2x a day for 14 days should clear that up. She cried when she stands up, it hurts that bad. And a higher dosage of pain medication. We will see how she is feeling tomorrow after her second dose of antibiotics.
She is feeling up a bit because my brother, his wife, and two kids will be here any minute for the holidays. I hope they handle the shock of her condition well. The past 5 months she has deteriorated quite a bit. Tomorrow she does dialysis again.
What did I learn talking to the social worker? I learned that my blood work and and urine results will be back early next week and in plenty of time for the next meeting the whole transplant team has every tuesday. Because of the Holidays, the next presentation meeting isn't until January 5th. Every Tuesday all the nurses and doctors get together and present each case of recipient and possible donor, talk about them, check out stats and results, and have 1 of 3 results. Either everything looks good, and we are approved, there might be some wacky results and/or further testing is requested, or we are denied. I was upfront about my tobacco use (yes I am in the process of quitting) but have messed up a bit recently. If we are passed then I will have more work up done. I originally was going to have a CT Scan, Angiogram, Pulminary Function test, and chest xray today, but cause of the holidays they decided to wait. I guess I will hear more on January 6th. I just had a chest xray and pulminary function test not too long ago at the VA, which yielded excellent results. I might be able to skip that step. If we are moved forward then we are entered into the Paired Donation Network or the United Network for Organ Sharing aka UNOS They do what is called Match Runs every couple of months. This means they take all the different cases of people and pairs and put them in a computer and use a fancy program to organize a big transplant swap. Sometimes they are small, but the larger collaborative transplants seem to be the new big thing in the Donation World.
The social worker asked me lots of questions about my life, work, family, etc. And also explained a lot about the actual surgery which I already knew about because I have done my research. I think the technical term for what happened with the social worker is PsychoSocial Evaluation.
I also learned that if we are matched into a massive transplant effort, that any one person can back out at ANY time up until the time that the anesthesia is administered. If someone backs out, the WHOLE transplant is called off, regardless if it's 4 or 50 people This is a bit scary, but I think if someone was going to back out, they wouldn't wait till this far along. But it could happen.
I had to read and sign a 7 page consent form today to be a living kidney donor. I passed all my evaluations with flying colors. The social worker told me I was the most informed patient she has ever dealt with.
That is all for now. I was advised of two more websites that I should check out.
www.livingdonorassistance.org and ustransplant.org. Haven't checked them out yet. But I
thought I would share them anyways.
Oh I almost forgot......Afterwards, I took my mom to the doctor to have her leg checked out. She has MOHS surgery a week ago on her leg that went almost down to the bone. She was complaining it hurt worse than before and her leg was so SEVERELY swollen. We arrived with no appointment, and were let back immediately. They took the miles of bandages off, and when they did you could smell it. GROSS, it was fire engine red, gross, pussy, and her skin graft had been eaten away. So it was nastily infected. I wanted to take a picture of it, but she wouldn't let me. I told her it would help describe her story better on here and might help someone prepare for seeing it themselves in real life when it happens to their loved ones. I wasnt ready to see it. She hit me with her crutch. so no picture. She described it best when she said it looked like a dog got ahold of her leg and started eating it like it was a raw steak. A quit script of Cipro antibiotic, 2x a day for 14 days should clear that up. She cried when she stands up, it hurts that bad. And a higher dosage of pain medication. We will see how she is feeling tomorrow after her second dose of antibiotics.
She is feeling up a bit because my brother, his wife, and two kids will be here any minute for the holidays. I hope they handle the shock of her condition well. The past 5 months she has deteriorated quite a bit. Tomorrow she does dialysis again.
Monday, December 21, 2009
#2 Phase 2 of work up
So I haven't left the house all day. Why? Because I am in the middle of a 24 hour urine collection for my Paired Donation work up. Tomorrow I will be at the hosptial all day. I have to turn in my urine sample tomorrow morning. Then I believe I am having a CT Scan, Angiogram, lots of blood work and meeting with a Kidney Transplant Coordinator and Social Worker. I am excited to get the ball rolling, but I am also nervous. I guess this whole thing is becoming really real.
Mom isn't doing well today. Although she did go to dialysis today. She is constantly itching like I mentioned in the previous blog. It's driving her crazy. They tried giving her some charcoal stuff, but it isn't helping at all. She had a very large MOHS surgery 4 days ago on her shin. It went to the bone. She is in a large amount of pain. She can't go up and down the stairs. I watched her come down on her butt the other day it was quite sad. She gets very tired doing even the littlest things. Every year we put up Christmas decorations together. This year she was winded and tired, huffing and itching. She'd hang three ornaments and then have to sit down. I did most of the decorating this year. I think it depressed us both a little bit. I had to leave the room a couple times. Tomorrow she has to go back to the doctor, she has no appointment, but she needs to go. She gets special priveleges cause she's awesome like that. The doctor even named the new addition of his office after her. ;-). Her leg reminds me of the elephant man right now. It is so red and swollen. She is in severe pain and cant get comfortable. We'll see what he says tomorrow. I will update tomorrow after I get done at the hospital.
My brother, sister, and their two kids are coming in town tomorrow!!!!!!!!!! I hope this isn't the last Christmas as a complete family. All I want for Christmas is for my mom's suffering to cease and for a transplant to take place. I think the family who hasn't seen her in a while will be quite shocked seeing the condition she is in. This holiday season has proven to be quite a emotional one for me, and it's about to really get emotional over the next few days.
Mom isn't doing well today. Although she did go to dialysis today. She is constantly itching like I mentioned in the previous blog. It's driving her crazy. They tried giving her some charcoal stuff, but it isn't helping at all. She had a very large MOHS surgery 4 days ago on her shin. It went to the bone. She is in a large amount of pain. She can't go up and down the stairs. I watched her come down on her butt the other day it was quite sad. She gets very tired doing even the littlest things. Every year we put up Christmas decorations together. This year she was winded and tired, huffing and itching. She'd hang three ornaments and then have to sit down. I did most of the decorating this year. I think it depressed us both a little bit. I had to leave the room a couple times. Tomorrow she has to go back to the doctor, she has no appointment, but she needs to go. She gets special priveleges cause she's awesome like that. The doctor even named the new addition of his office after her. ;-). Her leg reminds me of the elephant man right now. It is so red and swollen. She is in severe pain and cant get comfortable. We'll see what he says tomorrow. I will update tomorrow after I get done at the hospital.
My brother, sister, and their two kids are coming in town tomorrow!!!!!!!!!! I hope this isn't the last Christmas as a complete family. All I want for Christmas is for my mom's suffering to cease and for a transplant to take place. I think the family who hasn't seen her in a while will be quite shocked seeing the condition she is in. This holiday season has proven to be quite a emotional one for me, and it's about to really get emotional over the next few days.
Monday, December 14, 2009
#1 Introduction and brief backstory
So hi!! I am not a blogger. I don't know how this is going to go. Maybe smoothly, maybe shaky, maybe non-existant. The reason I started this blog is because I could not find any story about what I am going through and my experience in watching my mom go through renal kidney failure, dialysis and everything else that goes along with it. I have looked at page after page after page of stuff related to Kidney transplants and donation options. If you've run across this blog and are just finding out someone you love is in kidney failure, check out these sites first
National Kidney Foundation
Living Donors Online
There are a lot of links on the page that describe some of the things i mention, so please click the highlighted words.
So a quick back story to let you know where we are. My mom is in renal kidney failure. She goes to Dialysis three times a week. She usually feels pretty good, comparitively, the day after dialysis. She gets up and moves around. She doesn't sleep well thru the night. She is plagued with a constant itch all over her body. A lot of dialysis patients itch. She scratches until she bleeds sometimes. She is suffering. It is quite hard to watch. This is the second time she has had renal kidney failure. She had a kidney transplant 25 uears ago. She also has skin cancer. She has had this over 25 years....WEAR SUNSCREEN!!!!!!!!!!!!! I am 30, and for long as I remember, my mom has had to go to the dermatologist (who happened to be my uncle) and get her skin cancers frozen off. Then slowly they got worse and had to start receiving MOHS surgeries. She usually has about 3 surgeries every two weeks. To put into perspective how long she's been dealing with this, the doctor said the other day after her surgery, there isn't any original skin left of her body to graft from. As soon as her previous surgeries heal, it's time for more. Throughout her life, she has had a couple other medical issues that she has overcome. She has had colon cancer, a slipped disc, and a parasidic twin.
I was between the ages of 5 and 6 the last time she went thru this, so I do not really remember. I do remember laying with her in bed and her arm sounded like the ocean. I since have learned this time around, it is because of a Fistula that is in her arm to hook her up to the dialysis machine. When her kidney function reduced to about 6% functionality it was time to start the transplant process. My mom has done her whole work up and is currently on the Kidney Transplant List. Which means basically at any moment we could get a call at any moment telling her to go to the hospital right away cause there is a kidney available for her. This also means, someone else has lost their life but was an organ donor. This kind of transplant is called a Cadaver Transplant. The doctors have said it is a higher success rate with a living kidney donor.
I went in and got my blood drawn to see if I was a compatible match with my mom. They said the results would be in after 3 weeks. 5 weeks later I received a call while I was getting my oil changed. The lady on the phone told me, well you and your mom were a perfect match. ***pause**** but sadly your tissue types just rejected each other. We can not let you donate to your mom, even if we try again and it works. UGGHHH the pause. Why was she cheery and pause after saying we were perfect match? Anyways, ok it was saddening. I didnt want to tell my mom. I wanted to be a match sooooo bad. I thought for sure it would be me, regardless of the fact I am not blood related. Regardless, just because I wasn't able to directly donate to her, I was/am determined to help her in any way I can. The kidney coordinator told me about the Paired Kidney Consortium. Kidneys have seemed to be in the news a lot lately. People Magazine had a story about a 6 way transplant at John Hopkins Then there was a 16 way transplant. Then a 26 way transplant. I just read about a 32 person one a few days ago. So this is what I am persuing currently. So far I have seen a social worker who asked me basic questions about my health history and gave me a jar to collect my urine in. Easy breezy.
Anyways thats it for now. More to come.
National Kidney Foundation
Living Donors Online
There are a lot of links on the page that describe some of the things i mention, so please click the highlighted words.
So a quick back story to let you know where we are. My mom is in renal kidney failure. She goes to Dialysis three times a week. She usually feels pretty good, comparitively, the day after dialysis. She gets up and moves around. She doesn't sleep well thru the night. She is plagued with a constant itch all over her body. A lot of dialysis patients itch. She scratches until she bleeds sometimes. She is suffering. It is quite hard to watch. This is the second time she has had renal kidney failure. She had a kidney transplant 25 uears ago. She also has skin cancer. She has had this over 25 years....WEAR SUNSCREEN!!!!!!!!!!!!! I am 30, and for long as I remember, my mom has had to go to the dermatologist (who happened to be my uncle) and get her skin cancers frozen off. Then slowly they got worse and had to start receiving MOHS surgeries. She usually has about 3 surgeries every two weeks. To put into perspective how long she's been dealing with this, the doctor said the other day after her surgery, there isn't any original skin left of her body to graft from. As soon as her previous surgeries heal, it's time for more. Throughout her life, she has had a couple other medical issues that she has overcome. She has had colon cancer, a slipped disc, and a parasidic twin.
I was between the ages of 5 and 6 the last time she went thru this, so I do not really remember. I do remember laying with her in bed and her arm sounded like the ocean. I since have learned this time around, it is because of a Fistula that is in her arm to hook her up to the dialysis machine. When her kidney function reduced to about 6% functionality it was time to start the transplant process. My mom has done her whole work up and is currently on the Kidney Transplant List. Which means basically at any moment we could get a call at any moment telling her to go to the hospital right away cause there is a kidney available for her. This also means, someone else has lost their life but was an organ donor. This kind of transplant is called a Cadaver Transplant. The doctors have said it is a higher success rate with a living kidney donor.
I went in and got my blood drawn to see if I was a compatible match with my mom. They said the results would be in after 3 weeks. 5 weeks later I received a call while I was getting my oil changed. The lady on the phone told me, well you and your mom were a perfect match. ***pause**** but sadly your tissue types just rejected each other. We can not let you donate to your mom, even if we try again and it works. UGGHHH the pause. Why was she cheery and pause after saying we were perfect match? Anyways, ok it was saddening. I didnt want to tell my mom. I wanted to be a match sooooo bad. I thought for sure it would be me, regardless of the fact I am not blood related. Regardless, just because I wasn't able to directly donate to her, I was/am determined to help her in any way I can. The kidney coordinator told me about the Paired Kidney Consortium. Kidneys have seemed to be in the news a lot lately. People Magazine had a story about a 6 way transplant at John Hopkins Then there was a 16 way transplant. Then a 26 way transplant. I just read about a 32 person one a few days ago. So this is what I am persuing currently. So far I have seen a social worker who asked me basic questions about my health history and gave me a jar to collect my urine in. Easy breezy.
Anyways thats it for now. More to come.
Subscribe to:
Posts (Atom)
