#15 New Year New Beginning?

It is New Years Eve, and the new year is fast approaching. My mom's Kidney Transplant is taking place in 11.5 days (1-11-11) and I think it's finally starting to sink in. I kind of feel like the Negative Nancy of the bunch, because I keep running through the "What if's" in my head. I know that mom's been through this before over 25 years ago, and that medical technology has advanced a lot. I also know they wouldn't risk this surgery if they felt that the chances of success were lower rather than higher. But I am starting to freak out here. Second transplants are more difficult, she's older, and I am just terrified that she will not make it through the surgery. Everyone has been really positive and hopeful, and almost seem to deny that this is a major surgery that is taking place, and that things CAN go wrong. Yesterday my mother gave me a list of people to call, it reminded me of the telephone tree system they had back in grade school. And I had the thought of having to call these people and tell them she didn't survive.

There is going to be lots of family at the hospital throughout the family, and I think that makes me even more nervous. I do not like crying around people, and I know I am going to be scared @#$&less through the whole ordeal. I am afraid I am going to lose it when they get ready to wheel her out to surgery. I know I will break down crying, but I don't want mom to see that, because I don't want her to worry as she's going into surgery.

Another thing I worry about is my brother. He won't be here for the surgery. And I am little upset about that, yes. Because if by chance she doesn't survive, he is going to be angry at himself for the rest of his life.

I worry about Mr R's surgery as well. We already had one scare with an xray that showed a spot on his lung (it ended up being nothing thankfully). I am being a typical Virgo, being over analytical and worrisome. I need to stop, and often I take a deep breathe and tell myself everything will be ok and turn out wonderful.

Most of the time I am very positive about the transplant. It is absolutely wonderful what the R Family is doing for my family, they've been friends for years, but who would've ever thought it would end up playing out this way? My mom joked for years that Mr R was her secret boyfriend and wondered when she would get a ring. But she's receiving something much better than a ring. She's receiving the gift of life. I am happy Mrs R has not minded this affair ;-)

I want to thank everyone who has expressed concern, prayed, and reached out tot he family. I'd also like to thank all the people who called to inquire about testing and those who did get tested even though you weren't a match. I had been enrolled in the pair donation network with my mom this whole time. After her transplant I am switching my enrollment to be an Altruistic Donor. Which means I will gladly donate my Kidney to whoever needs it if we are a match. It's the least I can do. If there is a part of me that I don't necessarily need and someone else does in order to live a healthy life, there is no way I could hesitate. Especially after watching what mom has gone through.

I am sure there will be more posts leading up to the day of surgery, and for everyone who would like updates, some will be called, texted, and there will always be updates on my personal Facebook Page as well as on the group page for Veva Needs A Kidney on Facebook.

Happy Thanksgiving

Please Watch This Video

#14 Wait, WHAT?????!!!!

Ok people, a few changes FOR THE BETTER!!!!!!!!!! Here we go.....

Yesterday I drove my mother to her Nephrologist appointment. And let me tell you, I am so glad I went with her. As I mentioned before, a dear friend of the family was tested to see if he was a match to donate a kidney to my mom. He was a positive match, though sometimes when you are a match, a person can have antibodies that build up in the body that could cause rejection of the transplanted kidney. This gentleman has almost completed all of his required testing, so this was the appointment we would find out more information about Velcade (a drug) and this experimental study that my mom would be placed in at the University Hospital.

After her initial check up with the doctor, my mom presented the question "Ok so now ....(name of donor omitted) has completed most of his testings, where does that leave me and the study with Velcade?" The doctor got a puzzled look on his face, and said "You aren't going on Velcade, we aren't putting you into a study" For a moment, I almost panicked. I could see the look on my mom's face too, like OMG what happened, why not? I think we both thought there was a problem and she was disqualified or something. Well, the doctor elaborated more, and said that mom and the donor have very mild antibodies against each other, and that the study basically wasn't necessary. Basically, there are very little chances for rejection (but remember there is ALWAYS a chance of rejection in any transplant no matter how perfect of a match). To remove the few antibodies that my mom does have, they will use a procedure known as Plasmaphresis. This will clean the blood, and basically is just like Dialysis. This is not a separate procedure, this will be done 24 hours before the actual transplant. So it will take place after she checks into the hospital for the transplant.

The surgery technically could take place within the next month, but with it getting close to the holiday season, the hospital is starting to have it's staff using their vacation time. So they have decided that it would be best to hold off the surgery until after the first of the new year. This way the entire staff/team will be there. Also all parties involved (mom, donor, brother, etc) and things that have already been scheduled, mom personally wants to wait until after the new year. t minus 3 months and counting.

YAY!!!!!!!!!!!!!!!!!!!!!!!!

#13 Time To Grab A Tissue

So yet again, I am sorry for not writing, I said it many times before, it feels like "The Boy Who Cried Wolf", when it's "...apologises for neglecting her blog, writes a less detailed overview of whats going on in the Kidney world, and then doesn't write again in a timely fashion, and repeat. " I guess I haven't been writing because things seem pretty steady with moms health. Slight recap with a dash of new stuff.......pneumonia is all cleared up.....hip pain is 70% better (turns out she did not need a hip replacement and got a couple shots in an inflammed muscle.)


It's become almost routine. Sure she has good days and then she has bad days. Good days consist of getting up, getting her hair did (done by herself mind you) with the occasional trip to Carol. Cleaning part of the house (cleaning, it's her thing, she shouldn't be having to clean but if you know her, you know she likes it done her way) Watching some tv. And cooking dinner. Her dietary restrictions are quite limiting, yet she still can cook quite a fantastic meal. She definately still has her pride. But I see it dwindling. My mom has never really be one to complain. She has the mentality of well, I can either sit and do things half ass and feel sorry for myself or I can deal with what I've been given and suffer thru it, and get on with it. Its been hard though because over the past couple months, and recently especially, I can see her body is Shutting down more and more. She can no longer drive, and has become completely reliant on my father. Thank god for him, he has been the glue. I worry about them both. Her blood pressure is so low on most days that you can't even get a reading. This morning I think the first reading it took was 56/23? She has fallen on a couple occasions, usually upstairs when trying to get out of bed. It worries me to death, being that she is use to be so independent she often doesn't verbalize that she needs help and just tries to do it herself. I am terrified she will fall and break a hip or worse. She sleeps a lot throughout the day, and she just rarely has any energy at all. This morning she told me "I feel like a prisoner". The other day my dad told me he felt like he didn't have a purpose in life anymore. Just the other day I thought to myself, I am watching my mother die. I can see the emotional toll is starting to hit the both of them, and at times I don't know what to do or say.
Now, I think it is time for some good news. A good friend of the family, who will remain nameless, is a positive match for donating a kidney to my mom!! However there were some antibodies that wanted to reject each other. But this is not necessarily a bad disqualifying thing. My mom is being placed into an experimental study at University Hospital where she will take certain drugs. to correct the antibody problem. During this time, the donor is getting his full work up. We just talked to him about a half hour ago when he delivered some more great news. His work up is going great, everything is falling in place on his end, and all of his testing will be done October 14th. That is when my mom will start going to University Hospital. If everything works out, which we are all hoping it does, she will receive her transplant in January.


Please everyone keep their fingers crossed. I will update more on the process ofter the 14th.

#12 Yikes a month has gone by

Yeowsers, over a month has gone by since I posted. Sorry, life is just crazy right now, and I have been busy busy busy. But also maybe a bit taken back by everything that has been happening in the ups and downs of mom, that I have kind of pulled away from talking about it. Not just on here, but in person too. I've been a bit vague when speaking to people. I've been trying really hard to stay positive and strong, but it's getting a bit hard. Tons have people have expressed their love, and prayers and offered an open ear or shoulder to lean on, and I thank you all deeply.
So let's see, what has happened in the silent month? Mom was released from the hospital after 19 days with pneumonia. Less than a week later, she was readmitted to the hospital. She had pneumonia yet again. But that , hopefully, is all over. She has been home, which we all were looking forward to, especially my mom. She looks really really thin. I am not sure what she weighs, but I am going to guess 110lbs? For a person who is 6'1 that is mega thin. Her fistula is a gastly sight. The skin is now stretched around it, instead of it being hidden in her arm. She still presents herself well, but I think it is a bit deceiving for me, because I see her on a regular basis. So it is hard for me to see the drastic changes that appear to others, as I see the slight progress. So slight, it presents itself in out of the blue moments. The other day we went to a family function at my Uncle's house. Some people have seen her more recently than others, some live close, some live a thousand miles away. Recently she has developed a severe pain in her groin. So much so that she now requires help getting in and out of bed, up and down the stairs. On flat surfaces she is using a cane, and at home she is using a walker. Back to the story, dad parked the car as close to the door as he could, and she slowly got out of the car, and creeped her way to the door. It was a moment that seemed to slow down to slow motion...as we walked up to the glass doors, and the people inside realized we were there, I could see (even though it was completely a fleeting moment, and not that blatant) the shock in their eyes to see her in the frail and fragile state she is in. She and we all had a great time though. She devoured some Deviled Eggs ( 4 of them, which really equals 2 whole eggs, which I was like WHOA MOM, piggy piggy) This made me smile to see her eat so much. I know it doesnt sound like much, but I dont see her eat that much of anything. She usually eats ice chips and her power bars, plus she loves to nibble on cinnamon squares and creme horns. Unfortunately, due to her condition, she couldnt eat any of the other stuff that were there. We chatted, visited, laughed, and said our goodbyes. She lasted about 3 hours, which I didn't expect to be that long.
She hates not being able to be independent. She is fully reliant on my father, which he hands down does whatever she needs and wants. She worries too much. What she needs to worry about is herself, and not overdoing it. But if any of you have ever met her, you know, she is a strong woman. She still tries and goes and goes and goes. She doesn't vocalize her pain very often, she tries really hard not to show how weak she is. She cries when she gets in and out of bed, she is in a lot of pain. She went to see my uncle, who is a doctor today. He said it could be 2 possible things. First, it could be muscle related, but his expertise and my mom's health history, makes him believe that it is the second. (I can not remember the name of it, but I will post that when I ask and find out) His opinion based on the same symptoms she experienced a couple years back, her hip is rotting from the inside out and she will require another hip replacement. She had one for the other side already as I hinted to a couple sentences back. This made me very sad, sad for her. My heart just sunk. On Saturday they are going to do an MRI to see what a CAT scan couldnt. If she has to have a hip replacement, she will continue for even longer to be off the donation recipient list. :-( She needs a kidney more than a hip. At least she will live is she doesn't get a new hip, she will not if she doesn't receive a kidney. UGH it's like when the hell is this going to stop. Hasn't she suffered enough? When is she going to get her break? How many more things does she have to go thru? She is only 65 years old. It is really hard to see her suffer. I just don't know how long she can keep her spirit up. I am terrified of her giving up, I don't know how she does it. I see it getting hard for her too, to keep it up, and it scares me greatly seeing her slowly degrading.

#11 Some GOOD News

Well, after 18 days of being in the hospital and things seeming to get worse and worse, FINALLY some progress is being made. Mom's tubes came out of her chest yesterday after Dialysis. It looks like the surgery was slow but successful, and that the fluid has drained off from her lungs. After pumping her full of great drugs, they took those puppies out. She was so excited that she called me 2 hours after the proceedure and told me. I could tell she was on another drug induced plane. So we are all hoping she gets released from the hospital today. But that might not happen to tomorrow. She trusts her doctors, and as much as she longs to come home, she knows she can't take a risk if there still is one lingering around. Fingers crossed.

#10 Post Surgery Update

It is the day after mom had surgery. SURGERY???? Yes, in between last post and this post, my mom was required to have surgery. She has been in the hospital for the past 10 days. She really was looking, sounding, and feeling better. She had energy too. But on paper, she wasn't doing better. Her tests came back and showed more fluid around the lungs. Her pneumonia was not going away and was actually coming back worse. The antibiotics just were not able to handle it, so the next option was surgery. There are three different types of proceedures that could've been done. The first, most non-invasive was to stick a needle into the area where the pneumonia was collecting (did you know that the fluid from pneumonia does not actually fill up inside your lung? It's more towards the outside from my understanding.) and to extract it. Problems with this proceedure? The needle can't get to every spot in the lung easily, plus the fluid turns into a jello like texure and can't very easily be sucked up into the needle. Mom had already had this earlier, but obviously it didn't work, so why try again? The second option was called Video Assisted Throacic Surgery (VATS). This is the one she opted for because it is the one that is pretty much a sure fire way to extract all the empyema. Empyema is a collection of pus and fluid that develops from a lung infection such as pneumonia. VATS is used to suck out the excess fluid and allow the lung to reexpand. They also place chest tubes in each lung to remove more fluids that may remain or develop for about 4 days. This is the proceedure mom chose and had done yesterday. I was not allowed to see her before or after surgery because I haven't been feeling well. I think its due to stress, but just in case it wasn't and it might be something else, it was best I not be around her. I did talk to her on the phone numerous times. And dad was there, and my aunt. She called me after surgery and I could tell she was heavily sedated. Lol, it was kind of amusing. I did talk to her again this morning, and she said she was in some pain, and that her tubes kept getting clogged which is a bit of a concern. But the surgery went well, no problems in that department. She had dialysis this morning from 6-9:30ish and she was in a feisty mood because she hadn't eaten in a day and a half. Dad said she was like a refugee who hadnt eaten in days and ordered everything on the menu and ate like there was no tomorrow.
Everyone keeps saying, (nurses, doctors, random people, even me) that she doesn't look sick. She makes herself and her demeanor always presentable, she doesn't complain, she doesn't mope around, etc, It wasn't until I saw her last and helped her shave her legs that it sunk in. She is super skinny. At 6 feet tall, weighing 110 is ideal in the model world, but not in the healthy world. I watched her remove all the bandages, hike her foot up onto the sink and shave around all the sites where she has MOS surgeries, her legs basically look like something a lion has just got done devouring. I was just there to help hold her up and pour water over her legs. This was the first time I've really ever looked at her condition and results of all the MOHS surgeries. But she didn't complain once, I was the one almost freaking out, not her. She felt much better after shaving her legs, it's the little things that make you feel normal, beautiful, and have self confidence.
What about the 3rd surgery option. Well it was to open her up surgically, spread her ribs and surgically open the lung and remove the fluid that way. The VATS actually is more effective because the camera can go to every angle and part of the lung easily. Even butterflied open only gives you one view.
If all goes well we hope she will be home from the hospital in a 7-10 days. Me and dad have been getting the yard ready for her to plant her flowers like she does every spring.
I will update again soon. Thanks again for all the well wishes and thoughts. Hopefully she will get past this part soon and get back on the donor list.