#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.

#4 Low Blood Pressure

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.

#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.