#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.

#9 The Saga Continues

Well, I am a bit baffled. On Friday, mom got a chest x-ray and was told her pneumonia was cleared up. Come Sunday morning, she woke up with horrible chest pains and a cough. My father went in early Sunday morning to check on her and found her sitting up on the side of the bed. First reaction was she was having a heart attack. My father said he would call an ambulance, but if you know my mom, you wouldn't be suprised when she said NO WAY!!! They waited 5 minutes and then my mom said she wanted to go to the hospital. In the emergency room they took a chest x-ray and low and behold her Pneumonia was back 3 fold. This time they said she was highly contagious. How is it that Friday she was pneumonia free and that time it wasn't contagious, and by Sunday she is contagious and really sick again?
She's got a private room at the hospital. They are handling her dialysis there. I was able to go see her yesterday. She had just gotten done with Dialysis when I saw her, and she had more energy than I thought she would have. I guess because she is SO sick that even the littlest things make her feel better. Normally after Dialysis, she goes right to bed for the night. She is very uncomfortable, her left side of her body hurts her really bad.
She is terribly skinny, and her itching is really bothering her. I know she hates being there, it disrupts her routine, and her comfort level is severely compromised. There is something about your own bed. It was nice to see her, I was scared and hated the fact I couldn't see her on Sunday. Her immune system is so down that I had to wear gloves and a mask in order to go in the room. I called her about a 1/2 hour ago and I could tell she was frusrated. She also was having a hard time completing a sentence. She seemed a bit confused and couldn't get her thoughts together. She kept repeating words and half sentences over, and at once point she said "I am losing my mind, I can't figure out what I am trying to say. I feel crazy" I think she was trying to tell me that she was frustrated with her nurses. They don't think of the little things because they aren't patients and they haven't been thru her situation personally. It's the little things. They came in to start her IV which takes 45 minutes, so she ordered her breakfast to coincide with the end of her IV. Breakfast arrives, but then the nurses decide to come in and make her do her vitals and have her walk around abit. So she wasn't able to eat breakfast. They came in and moved everything around and didn't put it back. So when I called, mom couldn't easily answer the phone and it hurt her to position herself to lean over and answer the phone. Seems like little non important things, but when you are terribly sick, these little tasks are big tasks.
The pulminologist is coming by today to check her out in a bit. The doctors said they aren't sure why her pneumonia isn't clearing up as fast. That a lot of her symptoms and tests point to pneumonia but there are a couple things that are inconsistant to pneumonia. They are working on finding out what is wrong. I hope they find an answer soon. It's really hard and scary to watch someone you love slowly deteriorating. I think I said this in the last blog. I love her to death and when you see someone suffering and there isn't anything you can do to truely help it is really hard. I have tried to do as much as I can.
I spent the day with my dad yesterday and I can see this is really hard on him as well. Both of my parents are the type of people that don't show pain or struggle, so when they do it is a bit hard because it's something I am not use to. I know dad is really concerned, as we all are, but it shows. He's been trying to field the calls from all their friends. He says he gets choked up each time he has to tell someone that mom is in the hospital and not doing well. But luckily, their network of friends are spreading the word to each other, and that makes it a bit easier for him. Mom doesn't really want any visitors, or phone calls. She is too weak and it hurts her to talk.
I overheard dad yesterday on the phone tell someone that she has been removed from all donation lists for the time being. She is too sick. If she and I were lucky enough to be a match in this last Match Run for the Paired Donation Network, we are not qualified now and will be removed from this time around. If someone loses their life and they happened to be a perfect match to give mom a kidney, she won't receive it. You must be healthy to undergo a transplant. Even the slightest cold can be enough for them not to go ahead with it. This worries us all and is a bit depressing. But, on the upside, once she is healthy she will be placed back on the list, and in the same priority order as she was. She will not be placed on the bottom of the donation list. That was one of my concerns that I do not have to be concerned about anymore.
As of right now, the doctors can not tell us much. They aren't quite sure of everything that is wrong, they are a bit baffled as to why it's being so resillient, and can;t say how long she will be in the hospital. They also said they do not know if she will pull thru this, meaning she might just keep constantly getting sick. Her body can't fight off small or mild infections as well as a healthier person can. It is very scary, and I have just started to admit to myself there is a definate possibility that mom will not receive a transplant and that her life is very frail. I hadn't really let the thoughts of her dying enter my brain, but it is a possibility. I have to sit down and discuss with them (or maybe just my dad) what will happen if that ends up being the result. I don't want to think about it, I don't want to know about it, but realistically I must prepare. I can't live in denial and then all of a sudden be unfprepared and the worst happens. I have not lost my spirit, just faded a tiny bit.
Like I said, she isn't really comfortable having visitors or calls. If you'd like to leave her messages either on here, I will pass them on to her. You can also email or call the house. O She likes cards too. If you have any questions, feel free to ask me. I'm trying really hard to keep everyone updated and let them know whats happening. Thank you to everyone who has expressed their concerns, have been there to listen, and offered up thoughts and prayers. You may not think you are doing much or helping, but really you are. The whole family sends out thanks.

#8 Down with the sickness!!!!

Well, it's been a difficult past 2 weeks. Sorry I haven't been updating in a timely fashion. It gets a bit hard to admit whats going on. As if not writing about it will make it go away. I wish. Well mom hasn't been feeling well for some time. She had quite a bit of tightness in her chest and has been really really weak. Her pulse was super low, and her heart rate was super high!! We finally convinced her to call the doctor. Basically he said get in here, and they ran a bunch of tests. Turns out she had/has pnuemnia. They gave her an IV, to hydrate her, and to administer a big whopping dose of antibiotics. They also gave her some in pill form to take at home. She is continuing on Dialysis, and for the past week the techs at the Dialysis Center have been juicing her up with doses of antibiotics in her IV. She drove herself to the hospital today for a follow up. They took x-rays and will let her know tomorrow how the pnuemonia is looking. She also is having more MOHS surgery tomorrow.

Despite how weak she is, mom is still as stubborn as ever about receiving help. She wants to drive herself to her appointment tomorrow. Every once in a blue moon does a scheduling conflict come up between me and dad as to how to get mom somewhere. She will not be driving herself tomorrow. I will not let that happen. She insists she is use to having her low blood pressure and will be fine. But everyone is fine until they are not. All I need is for her to get in a car accident and get hurt, let alone hurt someone else.

Its been quite hard watching someone you love deteriorating. She has almost no energy after Dialysis, and where as before, she was feeling pretty good the day after, has slowly diminished. She is tired all the time, and usually in some sort of pain. The quest for a transplant has gone silent. No new people have been tested, and I haven't heared anything about a Match Type from the Paired Donation Network. I thank everyone for the initial interest in wanting to help out, but we still need help. If you werent originally qualified to donate to mom, you can always be part of the Paired Donation Network. If worse comes to worst, and mom never received a transplant, I will still remain in the system. I will gladly donate a kidney to anyone who can use it.

This whole experience had taught me a lot. I continue to learn everyday. It has been a long hard journey thus far. I feel I am starting to break in my spirit. I try to remain strong for my mom and my dad. But it is getting hard. Watching day by day someone struggling and you can't make it go away or solve the problem. A lot of my friends have stopped asking about her or myself. What people fail to realize is that this isnt something that will just go away, or get better by itself. There isn't going to be a time when you ask how things are that you are going to get a positive god news answer. She is dying, and without a transplant she will eventually die. Just because there isn't positive news on the daily, doesn't mean it doesn't mean something to me when you inquire or offer words of encouragement. Seems to be far and few in between. I thank all of you who have been there for me, and have offered your support. You know who you are. I love you.

#7 Another Blog from a Living Donor who is in Surgery TODAY

My cousin Tracy's friend is in surgery today, donating her Kidney to a stranger. Read the emotional blog...... It was suff like this I have been trying to find.

http://amaliborski.wordpress.com/

#6 My brother is joining the Paired Donation Network!!!!!!

As I mentioned before, my brother was allowed to be tested. To correct something I got wrong, apparently his High Blood Pressure incident wasn't a long time ago, it was not too long ago, but it wasn't a big issue so he was tested over the Holidays while in town. Yay!! He was the most likely candidate to match my mother, being directly blood related. Unfortunately, he was not a match. That news was hard to receive, and even harder to tell mom. But on the flip side, he has decided to proceed with entering into the Paired Donation Network!!! Currently the coordinators are looking for a hospital in the Dallas area that will handle his work-up.

Based on what the coordinator told me the last time I saw her, they should be taking all of the different cases that are in the big database and try to match them up next month. Hopefully my brother's workup will be done in time and he will be in that dataase as well.

Mom is doing quite well given the circumstances. She loves the new dialysis center, they treat her well, it is quite posh, and it seems to make her feel better. She seems to have more energy these days. She's been hitting the town and partying it up haha. Ok, she's gone over to a couple friends houses and had dinner. She's been battling severely low blood pressure. Some days its so low it doesn't even register. It is quite odd because not too long ago she was on medications for high blood pressure. But she is going about her daily routine. Because of her skin cancers (WEAR SUNSCREEN KIDS!!!) she is still having Mohs Surgeries quite frequently. Recently they took a rather large one out of her other leg, though it wasnt as bad as the previous surgery on the opposite leg. She quit using the crutch a couple days ago and is hobbling around the house. Did you know that Kidney Transplant patients are 4x more likely to have skin cancer. They have an increased risk for patients who undergo kidney transplantation and who receive long-term immuno-suppression. Mom had skin cancer before her transplant 24 years ago so it sent it into Hyperdrive. Read about it here.

Things have been uber stressful for my father recently. He's the one who has been taking care of mom on a day to day basis. I am sure this wares on him and must be hard emotionally. He's also been taking care of me the past 2 weeks, cause I had my tonsils out. Not a very nice proceedure to have an adult. I was unable to talk, eat, or function as a human being. Still not 100% yet, but i can talk now. Woohoo. I don't understand how mom can take pain killers, they have turned me into a zombie. I felt horrible not being able to care for my mom the past 2 weeks. And there still is a lot I can't do. I hate the fact that she has been worried about me. But this is a blog about her, not me so I won't get into details. But I was able to go over today and finish priming her bathroom for an hour. Thats how you know she is feeling better, she is wanting to redecorate the house!!!!

I wanted to thank all of those who have sent well wishes, inquired about donating, and got tested. If you were interested in being tested for my mom, but were not the right blood type, but still want to help, you too could join the Paired Donation Network. It is amazing option and is another way people can help who thought they weren't able to. If interested

#5 Welcome to the Paired Donation Network

Some good news for a new year!!!

Well got some good news today. I received a call this morning from the kidney transplant coordinator. As mentioned previously, today my mother and I's case was presented to all the doctors. All of my test results looked great and healthy, so we were approved. We are now entered into the Paired Donation Network computer database. What happens now? We wait.......this seems to be what has required most of my time thru this process...waiting.... Every 3 months, all the different cases are entered into this program that tries to pair up as many possible matches. I had mentioned in a previous blog that they are now doing up to 32 kidney donations through this paired donation interwoven web of technology. So that means 64 people all went under the knife so 32 people could receive their transplant. Here are some examples:

I asked, and the last time they tried to pair everyone was 1-1.5 months ago. So we wait. I'm going to say 2 months. When/if this attempt fits us into a set of matches then I go and get blood work done again to reassure I will crossmatch whoever I have been paired to donate to. More tests will be done after that result comes in.

These multiple people donations require a lot of time and effort and tests. Everyone is set up to be in surgery at the same time. This is to ensure that everyone goes through with the donation. They don't want me to give up my kidney, but the person who is donating to my mom, back out.

In the meantime, my brother, who is the most likely person to match my mother (remember I was adopted so I am not blood related), was finally allowed to be tested. He went to have his blood drawn over the holidays while he was in town to see if he is a crossmatch. They originally wouldn't test him because they thought he had a problem with his blood pressure. This was many years ago, and a one time thing. Hence, not an ongoing issue. They made him also take home a computerized Blood Pressure monitor that stored his readings for 24 hours. His tests will come back in about 3 weeks.

Mom's leg is healing finally. It's slow, but doing better. Not hurting nearly as much, and she is able to get around without a crutch now. Her blood pressure is still a bit low, but much better than over the holidays. She is still on Dialysis 3 times a week. She says now she looks forward to dialysis, cause it makes her feel better. She usually does pretty good the day after dialysis, but is definately tired by the time it comes around again. Her itching is as persistant as ever. Drives her crazy, and drives me crazy watching her suffer through it. I wish that there was a cure or at least find something that relieves it just a little bit. Nothing helps, and this is not just something she goes through, it's a dialysis thing.