It's been a few weeks since our last update. Needless to say, much has happened since then.
Karen is home and doing great! So well, that the doctors only need to see her once each week! That's a relief as we need to wake at 3am to ensure we were arrive at UCLA by 6am. In another month, they may knock the appointments down to once every other week, then once a month, and so on. Karen is still limited to lifting only five pounds, but she's been cleared to drive! And for those that may be wondering about the drain...yes! It's out! Still has pain near her incision, but it is more likely pain from cutting through the muscle, rather than the surface incision itself.
Day by day, things are returning to normal. She looks great; you would never know she had anything done, except that her skin tone has improved...but I'm on the record as saying her skin tone was perfect prior to the surgery. I guess it has became "more perfect". Karen has much more energy...rarely complaining about being tired. If she does say something about being tired, I convince myself in a half second that her kidney is shutting down, and flash her a worried look. She then lets me know, "No Bob, I'm just 'normal-people' tired. I only slept five hours last night." I, of course, dismiss her non-medical opinion and check all her vitals to ensure there is no sign of rejection or infection, then pester her every 10 minutes with, "How do you feel?" So I might be a bit paranoid, but I'm convinced that I've prevented a disaster at least a half-dozen times with my keen powers of observation.
Another interesting change is her internal temperature control. Yesterday in the car she said, "Can you turn the air on, I'm too warm back here." Instinctively, my mom started to pass her a blanket saying, "Here you go Karen, you can use this. I'm not using it." You see...Karen has never, ever, ever, ever asked to turn the air on. The words "too warm" have NEVER been uttered by her...EVER. She told my mom, "No Jan, I'm too warm, I need some cool air." My mom looked at me with the most confused look I've ever seen on her face! How cool is that!
Karen's mom is back in Florida. She seems to be doing well, but not quite 100%. She still has some pain from where the incision was. It doesn't seem to slow her down though. I can't believe that she was only in the hospital for 22 hours total! Simply amazing. Thank you, thank you, thank you Barbara!
My mom has been out here since the beginning, but must leave us on Tuesday. She has been an angel in our lives. Having her here allowed me to focus 100% on Karen during our stay at UCLA. The kids were taken care of just as they would have been if we were home. There's not another person in the world that could have done all she did for us. She was the glue that held the family together, when Karen couldn't be there. (Karen is considered the "glue" in our family...I am not considered the "glue", but rather part of the "mess" that needs to be held together.)
I want to say "thank you" one more time for all the thoughts and prayers from everyone. I cannot say enough of how it provided me strength and encouragement during the difficult times. The numerous notes of prayers from people was overwhelming. It made a difference in my life, and I am forever grateful. For those that don't believe in the power of prayer, I respect your opinion. Please respect my opinion when I say, "You're an idiot." Excuse my harshness, but I just can't imagine going through something like we went through without faith. If you disagree, give me a call, I'd love to chat about it.
I also want to remind everyone about the Kidney Exchange program at UCLA:
http://transplants.ucla.edu/body.cfm?id=112&oTopID=34
The concept of an "exchange" is a relatively new one. Karen is probably the first person you've ever heard of who has received a kidney through this program. The big takeaway is:
If you need a kidney, you do not need a MATCHING donor. You only need to have someone willing to donate a kidney, whether they match or not. This is different from the "standard" kidney transplant tactics, techniques, and procedures.
When word of this program is spread, lives will be saved. I encourage YOU to pass on these words to someone you know, or someone you know OF (friend of a friend, or cousin's friend's sister-in-law's great uncle's brother's daughter, etc). I look forward to playing an active role in getting the word out in the future. In the mean time, if you or anyone you know has questions about the program, feel free to contact me directly.
I'll plan to write another update next month, unless breaking news happens before then.
Cheers!
Bob
Sunday, March 20, 2011
Monday, February 28, 2011
Karen - Update #3 - Going home?
Getting ready to go in bright and early for my next post op visit. We will be hoping for the ok to head back home after our appointment. We are also hoping that they will finally take my drain out! The drain is extremely annoying, so this is a big priority for me tomorrow! I mean REALLY.....who wants to walk around with a drainage tube attached to their side?! So, hopefully I will get to sleep in my own bed tomorrow night and hug my two awesome kiddos!!
On a different note, my Mom is doing amazing! She still has some pain around the incision when she has to go from sitting to standing, but overall she is just incredible! She will continue to stay in the LA area until the docs give her the go, which should happen on March 4th. After she is released, she will head out to Edwards with my Grandma Thompson and my Aunt Ginger.
Thanks to Meredith Kipp and Kelly Howard for the wonderful bag you brought before I left for the hospital. It has come in very handy. I wanted you to know that I have been using the journal to keep track of everything I eat and how I feel as I am adjusting to all of my meds. It has been a perfect tool post transplant! I also wear the beautiful bag to distract attention from my ugly drain! ;)
10A spouses - Thanks so much for the fruit basket! So absolutely yummy! The chocolate covered strawberries were gone in a flash!! You girls are awesome!
Oh yeah, maybe you were wondering why I wrote this blog update and not Bob. Well, I think he has just exhausted himself and is happily snoring by my side :) He certainly deserves it!!
Wishing you all well! - Karen
On a different note, my Mom is doing amazing! She still has some pain around the incision when she has to go from sitting to standing, but overall she is just incredible! She will continue to stay in the LA area until the docs give her the go, which should happen on March 4th. After she is released, she will head out to Edwards with my Grandma Thompson and my Aunt Ginger.
Thanks to Meredith Kipp and Kelly Howard for the wonderful bag you brought before I left for the hospital. It has come in very handy. I wanted you to know that I have been using the journal to keep track of everything I eat and how I feel as I am adjusting to all of my meds. It has been a perfect tool post transplant! I also wear the beautiful bag to distract attention from my ugly drain! ;)
10A spouses - Thanks so much for the fruit basket! So absolutely yummy! The chocolate covered strawberries were gone in a flash!! You girls are awesome!
Oh yeah, maybe you were wondering why I wrote this blog update and not Bob. Well, I think he has just exhausted himself and is happily snoring by my side :) He certainly deserves it!!
Wishing you all well! - Karen
Friday, February 25, 2011
Update #20 - Barbara discharged from hospital
Believe it or not, Barbara has already been discharged from the hospital! Her total time in the hospital was just barely over 24 hours. Upon release, she seemed nearly completely normal, suffering very few after-effects from the surgery. Of course there was a bit of pain, but it was well controlled with medication.
We are now over 24 hours post-release, and you can hardly tell she's had anything done! Years ago, Karen had her wisdom teeth pulled...she seemed to suffer a heck of a lot more than Barbara is suffering now. It's a testament to the surgeon's skill and Barbara's toughness.
Yesterday, Karen's grandmother and aunt flew in from Florida to help with the recovery process. It's great to have them here. Karen and her mother can't wait to feel up to a day of shopping in Beverly Hills. Catch 22 as far as I'm concerned.
Karen is getting better with each day, although she continues to experience some nausea and other sensations, most all of which are due to medications. Some noted side effects:
- nausea
- flushed face
- slight shakes
- pain on bottom of feet
- hot feet....?
- nausea
The nausea has been no fun, but she was placed on new medication today that should help. The most notable positive changes are:
- Not tired any more! - As long as I've known Karen...she had always tried to catch an extra 10, 30, 90 minutes of sleep in the morning. She felt groggy all day, perpetually needing a nap. NO MORE! Our alarm went off at 0530 this morning...I instantly said, "Do you feel tired?"........"Nope!"
- She isn't perpetually cold! It was always a daily battle of Karen trying to sweat me out of the house, car, etc. Now she actually is asking, "Would you mind if I turned the air down a notch or two?"
I can see where this is going. In six months, Karen will be up at 0600 every single morning, ready to go, kicking the family in the butt to start our day. She'll have the a/c set on 65 degrees. I'll end up having to either ask the docs to put a "meter" on her kidney so I can turn it down a bit, or I'll have to get a new kidney for myself, so I can hang in there with her.
Again, another pitch to check out the kidney exchange program:
http://transplants.ucla.edu/body.cfm?id=112&oTopID=34
THIS PROGRAM IS IN ITS INFANCY - IF YOU KNOW SOMEONE WHO IS ON DIALYSIS, YOU MAY SAVE THEIR LIFE BY CHECKING THE LINK.
I cannot stress that enough. The developers of the program are TOO BUSY to "market" the program. They are too busy saving lives on a daily basis...they simply do not have the time. I hope to help by spreading the word about the program. I will provide much more information in the future, but for now, send this information to someone you may know that needs help. The bottom line...you do not need a COMPATIBLE donor to receive a kidney...you just need someone that is willing to give their kidney, whether they are a match or not. THIS IS COMPLETELY DIFFERENT FROM WHAT HAS BEEN TRADITIONALLY DONE. Dr. Veale said he will meet people that have been on dialysis for 4-5 years, and had someone that was willing to donate a kidney, but was not a match.....so they lived (and many die) on dialysis. They are not aware of the program until Dr Veale tells them about it. 3 months later, they have a new kidney, and a new life.
Please pass the good word,
Bob
Wednesday, February 23, 2011
Karen - Update #2 - Mom's donation successful!
Just got word that my Mom's surgery was a success and that everything went well! However, we won't be able see her for another 2 hours. So off goes Mama's kidney to Cornell in NY to help a lady waiting on her new kidney! Good luck to the lady in NY tomorrow, I don't know you, but I am so excited for you!! I hope you are not tired anymore and I hope you don't go home with a drain in your side ;)
Karen
Karen
Update #19 - Still in Surgery - & Ode to Karen's Surgeon
Barbara is currently in surgery. Please continue to pray for her. We should receive an update soon.
I wanted to take this opportunity to tell you a bit about Karen’s doctors, specifically her transplant surgeon, Dr. Jeffrey Veale.
Where do I begin…I cannot possibly say enough about this man. Dr. Veale brought SO MUCH comfort to Karen and I throughout the entire process. When Karen felt anxious about the surgery, he put us at ease in the first five seconds of seeing him. I cannot stress enough the comfort he brought into the room with him. If there were questions in our mind, they were erased when he spoke. Our confidence in him was, and is, immeasurable. Not only was his “bedside manner” top-notch, but his credibility is off the chart. A two minute conversation with him reveals there is no better person to perform a kidney transplant on Karen than Dr. Jeffrey Veale.
A fantastic article which sums up his importance in our lives, and in the lives of countless others…please, please, please check out the following article:
More details on the kidney exchange program, note that all five videos include our hero:
With Karen in the care of another doctor…I would have been a basket case.
An angel, a world-class surgeon, a rock star. There’s so much more I’d like to tell you about Dr. Veale, but I’ll leave it at that for now.
Cheers,
Bob
Update #18 - Barbara's big day!
As I write this, Karen's mother is undergoing preparation for her Kidney donation scheduled for 1400. What a wonderful human being she is. A bit nervous this morning, but overall, handling everything like a champ. Some of you may be wondering, "Why is Barbara donating a kidney if Karen already received one?" If you are interested in the answer to that, check out the following link. It details what exactly the kidney exchange program is all about.
http://transplants.ucla.edu/body.cfm?id=112&oTopID=34
Keep in mind, Karen is doing great, and getting better. I'm in awe that Barbara is completely fine going under the knife, knowing that her daughter is going to be okay whether she goes through the surgery or not. It's a testament to her character that she is still 100% willing to donate her kidney, given the conditions. There wasn't a single shred of her being that even flinched at the idea. I'm not sure exactly how many people will receive kidneys because of Barbara's donation, but last I heard it was around five. Isn't that amazing? Please give the web page a look...consider if you would be willing to give a kidney to a stranger, knowing that it can set off a chain of which potentially dozens of people will receive the gift of life. Living donation is a beautiful thing.
I'll update throughout the day.
-Bob
http://transplants.ucla.edu/body.cfm?id=112&oTopID=34
Keep in mind, Karen is doing great, and getting better. I'm in awe that Barbara is completely fine going under the knife, knowing that her daughter is going to be okay whether she goes through the surgery or not. It's a testament to her character that she is still 100% willing to donate her kidney, given the conditions. There wasn't a single shred of her being that even flinched at the idea. I'm not sure exactly how many people will receive kidneys because of Barbara's donation, but last I heard it was around five. Isn't that amazing? Please give the web page a look...consider if you would be willing to give a kidney to a stranger, knowing that it can set off a chain of which potentially dozens of people will receive the gift of life. Living donation is a beautiful thing.
I'll update throughout the day.
-Bob
Monday, February 21, 2011
Karen - Update #1! Thank you!
So I have been wondering how I express my feelings for all of the amazing support that I received, literally from all over the world, through my transplant process. I have been waiting for this day since I was around 5 years old, I knew it would show up at some point in time. What I did not envision was the overwhelming support of so many friends and family. Don't get me wrong, I love you all and I know my husband rocks! But MAN did you all exceed my expectations! I just can't find the words to tell you what it meant to know that so many people were behind me on this. Support like that truly makes a person stronger, so with every fiber of my being.....I THANK YOU!!! My husband, as you all know, is a pretty awesome guy as well. I have been trying to find a way to portray my thoughts to him about everything he has done for me through all of this. I told him today that I didn't go through this with his help, but "we went through this". He was there for every awful part, every wonderful part and every disgusting part with love in his heart. He brought me sips of water, helped me out of bed, helped unplug all of my wires every time I had to get up out of the hospital bed, kept everyone updated, brought me the phone when he thought I would be up for calling a friend (even if I thought I wasn't - although he was always right!), brought me my computer, brought me my schoolbooks, and on and on! Not only did he support me and you (my friends), but he loved my mom and my sister while they were waiting as well. Who has that kind of strength?! So again, to my friends, family and Bob....thank you!
So on a different note, even though I have been waiting for this for most of my life, it still doesn't seem to make it feel normal. It IS weird that someone else's kidney is inside of me. It IS weird that I have to take so many medications, to include 2 TBSPs of canola oil everyday (yuck!). It IS also weird that I don't feel tired anymore, which was a feeling that I always had, pretty much all the time. I am hoping that side effect will stick with me! It is totally weird that I still have a tube sticking out of my side. But I am looking ahead and getting used to my new life with meds and some small restrictions. For example, when I get to Lake Tahoe this summer to visit with friends, I will not be joining you in the water. But a little price to pay for not being hooked up to a dialysis machine to live! I am looking forward to the day that I walk into the gym and do a normal workout! I look forward to driving again. And I REALLY look forward to getting this tube out of my side! I also look forward to thanking the wonderful man in TX that decided that it would be a great idea to give away a perfectly good organ! I wonder what he will be like? I think of a cowboy in wranglers and boots, but maybe he is a business man? Who knows? Either way.....TX man....you rock!!
As for this blog, I really enjoyed reading everything that Bob updated you all on over this time, as well as the comments. Peter Schaaf, thanks for having confidence in me and guessing my creatinine level! :) Really people.....1.7, 1.8???? I am stronger than that!! Ricky...I knew you were always one of the smarter people in the family and found it funny that you actually had a reason why balloons were probably not allowed in my hospital room, AND that you are probably correct. For those of you that don't know, my cousin Ricky also offered me his kidney. It worked out differently, although we were a match, but I thank you Ricky and love you! Amy Barnett, I will certainly have to learn to be more careful with over the counter meds now! Did you see the stack of pills they gave me?! Well, at least they didn't give them to me after I had downed 5 margaritas!
Bob and I will continue to post on this blog as we are not completely through our ordeal as of yet. In order for me to get this TX kidney, my Mom had to also agree to give one of her perfectly good kidneys. She will be doing this on Wednesday and the kidney will be overnighted to NY. It will be interesting to be on the side of the donor and know a bit about my TX donor man went through. My mom is now on a clear liquid diet until then and I am sure is getting a bit nervous. I am really hoping this will be easier on her than it was on me. Please keep my Mom in your thoughts and prayers! It is a very difficult thing to watch a loved one go through something like this when there is NOTHING wrong with them! I love my Mom very much and pray that this goes as easy as possible for her on Wednesday and that her recipient takes to her kidney better or just as well as I took my donor's kidney!
Thank you all from the bottom of my heart!!
Love -
Karen
So on a different note, even though I have been waiting for this for most of my life, it still doesn't seem to make it feel normal. It IS weird that someone else's kidney is inside of me. It IS weird that I have to take so many medications, to include 2 TBSPs of canola oil everyday (yuck!). It IS also weird that I don't feel tired anymore, which was a feeling that I always had, pretty much all the time. I am hoping that side effect will stick with me! It is totally weird that I still have a tube sticking out of my side. But I am looking ahead and getting used to my new life with meds and some small restrictions. For example, when I get to Lake Tahoe this summer to visit with friends, I will not be joining you in the water. But a little price to pay for not being hooked up to a dialysis machine to live! I am looking forward to the day that I walk into the gym and do a normal workout! I look forward to driving again. And I REALLY look forward to getting this tube out of my side! I also look forward to thanking the wonderful man in TX that decided that it would be a great idea to give away a perfectly good organ! I wonder what he will be like? I think of a cowboy in wranglers and boots, but maybe he is a business man? Who knows? Either way.....TX man....you rock!!
As for this blog, I really enjoyed reading everything that Bob updated you all on over this time, as well as the comments. Peter Schaaf, thanks for having confidence in me and guessing my creatinine level! :) Really people.....1.7, 1.8???? I am stronger than that!! Ricky...I knew you were always one of the smarter people in the family and found it funny that you actually had a reason why balloons were probably not allowed in my hospital room, AND that you are probably correct. For those of you that don't know, my cousin Ricky also offered me his kidney. It worked out differently, although we were a match, but I thank you Ricky and love you! Amy Barnett, I will certainly have to learn to be more careful with over the counter meds now! Did you see the stack of pills they gave me?! Well, at least they didn't give them to me after I had downed 5 margaritas!
Bob and I will continue to post on this blog as we are not completely through our ordeal as of yet. In order for me to get this TX kidney, my Mom had to also agree to give one of her perfectly good kidneys. She will be doing this on Wednesday and the kidney will be overnighted to NY. It will be interesting to be on the side of the donor and know a bit about my TX donor man went through. My mom is now on a clear liquid diet until then and I am sure is getting a bit nervous. I am really hoping this will be easier on her than it was on me. Please keep my Mom in your thoughts and prayers! It is a very difficult thing to watch a loved one go through something like this when there is NOTHING wrong with them! I love my Mom very much and pray that this goes as easy as possible for her on Wednesday and that her recipient takes to her kidney better or just as well as I took my donor's kidney!
Thank you all from the bottom of my heart!!
Love -
Karen
Update #17 - Freedom!!!!!
Great news! I learned how to insert pictures into the blog!
More great news! Karen has been discharged from the hospital!
If you zoom in to the picture, you can probably see how excited she is after I asked her to quick hop out of the car to take a picture!
Karen Ungerman, Room #212
UCLA Tiverton House
900 Tiverton Ave
Los Angeles, CA 90095-9000
(310) 794-0280
Unfortunately, we still cannot accept flowers. Apparently the soil and water used by fresh cut flowers are known to carry large amounts of bacteria. Because Karen's anti-rejection medication lowers her white blood cell count (and thus the ability to fight infections), it's best to stay away from fresh cut flowers, at least until we are out of the (small, enclosed) hotel room.
In the meantime, Karen will continue to learn about her medications:
There's at least a dozen of them. A year from now it should be down to just a few. In the meantime, the doctors need to find the right dosage, by balancing her blood levels with a tolerable level of side effects (nausea, bloating, headache, dizziness, etc). Much of the "guesswork" is why we are staying in the LA area for a while. If she starts to have a crazy side effect, we need to be close to the hospital. After a week, we should have a pretty good grasp on things.
So the next big thing on the agenda is Barbara's surgery. Two days to go! Please, please, please continue to pray for Barbara. Pray for a smooth operation and a quick recovery. Each time I look at Barbara I realize if it wasn't for her, Karen would NOT have a new kidney in her right now. Plain and simple. She is a wonderful woman, and I hope I could have the same character as she when placed in the same situation. Who knows, maybe I'll have that opportunity one day.
A very wonderful person has asked for information on Karen's doctors. I promise to do that soon!
Love you all!
Bob
Saturday, February 19, 2011
Update #16 - Huge Improvements
It's unbelievable, but Karen seems pretty close to her old self. Of course there is some pain from the incision, but all other ailments have pretty much resolved themselves. A few exciting things to report:
1. Karen was placed back on normal foods today! She ordered turkey and gravy with mashed potatoes for dinner. I asked how it was, she said, "Awful!" I guess it is hospital food.
2. We received word that Karen may be discharged from the hospital tomorrow! Holy cow, that happened fast.
3. Probably the most exciting thing today, and this may be a bit disgusting to some, but Karen had her catheter removed today! Now here's why it's so exciting....when she went pee, it was YELLOW! Okay, I realize probably every one of you are shaking your heads saying, "Come on Bob, really? This is what you're updating us on?" BUT ----- think of it, Karen's kidneys haven't been working. Whenever she peed prior to the surgery, it was always clear, because the kidneys were not filtering any of the toxins out of her body! No matter how hydrated or dehydrated she was, she had clear pee. For the first time in over a year, Karen's pee was yellow!
So of course, I immediately told her she was dehydrated and that she needs to drink more water :)
I'll let you know if/when we get released.
-Bob
1. Karen was placed back on normal foods today! She ordered turkey and gravy with mashed potatoes for dinner. I asked how it was, she said, "Awful!" I guess it is hospital food.
2. We received word that Karen may be discharged from the hospital tomorrow! Holy cow, that happened fast.
3. Probably the most exciting thing today, and this may be a bit disgusting to some, but Karen had her catheter removed today! Now here's why it's so exciting....when she went pee, it was YELLOW! Okay, I realize probably every one of you are shaking your heads saying, "Come on Bob, really? This is what you're updating us on?" BUT ----- think of it, Karen's kidneys haven't been working. Whenever she peed prior to the surgery, it was always clear, because the kidneys were not filtering any of the toxins out of her body! No matter how hydrated or dehydrated she was, she had clear pee. For the first time in over a year, Karen's pee was yellow!
So of course, I immediately told her she was dehydrated and that she needs to drink more water :)
I'll let you know if/when we get released.
-Bob
Friday, February 18, 2011
Update #15 - Keep Getting Better
Karen continues to improve in nearly every category. Her creatinine has dropped to 1.0. All other blood levels are trending in the right direction as well. Her pain is subsiding and her nausea is nearly fully controlled. Each hour seems to bring improvements!
The only thing that hasn't seen improvement is her food intake. That seems to be the last hurdle. Because she was under anesthesia for so long, the doctors need to ensure that her digestive system is fully awake prior to ingesting any food or liquids. Until now, she has been on IVs for all her hydration and nutrition (with the exception of one sip per hour).
She's fully attentive, is initiating all her walks, and was even up for making a couple phone calls!
We probably will be in the hospital through the weekend. Because her digestive system hasn't kicked back on-line, they'd rather be safe than sorry. Still no flowers to the room, but it sounds like they can be sent to our house. Address is 777 S Knight Drive, Edwards, CA 93523...but we won't be back there until early March.
I'll keep you updated.
Cheers!
Bob
The only thing that hasn't seen improvement is her food intake. That seems to be the last hurdle. Because she was under anesthesia for so long, the doctors need to ensure that her digestive system is fully awake prior to ingesting any food or liquids. Until now, she has been on IVs for all her hydration and nutrition (with the exception of one sip per hour).
She's fully attentive, is initiating all her walks, and was even up for making a couple phone calls!
We probably will be in the hospital through the weekend. Because her digestive system hasn't kicked back on-line, they'd rather be safe than sorry. Still no flowers to the room, but it sounds like they can be sent to our house. Address is 777 S Knight Drive, Edwards, CA 93523...but we won't be back there until early March.
I'll keep you updated.
Cheers!
Bob
Thursday, February 17, 2011
Update #14 - The Winner Is.....
Okay...this is pretty amazing...as I mentioned, Karen's creatinine level had dropped from approx 3.5 all the way down to 2.0 in less than 24 hours. We eagerly awaited her results from her 6 a.m. blood work this morning. Her creatinine level was 1.2!!!! NORMAL kidney function for you and I is 0.5-1.3. That's it! Karen has "NORMAL" kidney function!!
Now the rest of her body needs to catch up!
So people probably want to know who won the "Creatinine Level Challenge"....none other than....with a stunningly accurate guess of 1.2....Peter Schaaf! Many of you may ask yourself, "Who's Peter Schaaf?" Well, that's a great question. I think the following link answers that question better than I ever could.
http://www.youtube.com/watch?v=CrLrb3CY7_8
Some may think from the video that he looks like he's changed since high school. Well...I have a funny story about that:
In 2005, the family and I were stationed at Luke Air Force Base in Phoenix, AZ. Following our move to Arizona, we looked up Amy Schierenbeck, as she was on old friend from high school. She invited Karen, Austin, and I (Lena was still just a bun in the oven) over for dinner one night, and mentioned in a brief conversation that Peter Schaaf also was living in the Phoenix area. When we arrived at Amy's house, I went to drop some stuff off in the kitchen, where a middle-age man stood that I did not know. I reached out to shake his hand and said, "Hi, I'm Bob Ungerman." He shook my hand and said, "Hi Bob Ungerman, I'm Peter Schaaf." What made it special was the WAY that he said it...almost like, "Hi idiot, you've known me for 20 years." Oops.
So Peter, congratulations. As you can imagine, Karen is absolutely ecstatic about speaking with you. The first time I asked, "Do you remember Peter Schaaf?" She looked at me, then passed out from pain and nausea. A few hours later I asked again, she said, "No," then asked me to get the nurse. She's not saying it explicitly, but I think she's trying to tell me that she's really excited about your upcoming conversation. Be sure to send me you phone number soonest. I think she's going to ask for it any minute.
Today is much better than yesterday for Karen. She has already taken two walks, and we have two more to go. I had to coerce her into the first one, but the second one she asked to do herself! She said she feels better when she's walking, rather than laying in bed. She has been complaining of a headache, which may be from being stiff from laying in bed. That or the fact that she just had a kidney transplant.
Karen's mother and sister came to visit earlier. It's hit-or-miss with Karen right now. Sometimes any talking saps her energy...other times she seems a bit more content. I think she had a little of both during her "visitation". Hopefully she will feel a bit better tonight, so she can talk for a bit before Jenny has to travel back to Florida tomorrow.
I don't think Karen is quite ready for visitors. Definitely not tomorrow...possibly on Saturday...I would think definitely on Sunday. Still no flowers, and further discussion with the nurse says even when we are in the hotel (and at home) flowers are not a great idea. They are worried that some germ/parasite/bacteria/fungus/etc? could be on the flowers, and end up infecting Karen. I'll keep asking the question, but hold-off for now. A couple bouquets arrived before I sent out the "no flower" message. They are sitting at the end of the hall. When we go for our walks, we get to see them. They always make her smile.
Bottom line, she's getting better. The pain and nausea are subsiding. She's walking more. She's talking more. And she's smiling more. Which I love.
Cheers!
-Bob
Now the rest of her body needs to catch up!
So people probably want to know who won the "Creatinine Level Challenge"....none other than....with a stunningly accurate guess of 1.2....Peter Schaaf! Many of you may ask yourself, "Who's Peter Schaaf?" Well, that's a great question. I think the following link answers that question better than I ever could.
http://www.youtube.com/watch?v=CrLrb3CY7_8
Some may think from the video that he looks like he's changed since high school. Well...I have a funny story about that:
In 2005, the family and I were stationed at Luke Air Force Base in Phoenix, AZ. Following our move to Arizona, we looked up Amy Schierenbeck, as she was on old friend from high school. She invited Karen, Austin, and I (Lena was still just a bun in the oven) over for dinner one night, and mentioned in a brief conversation that Peter Schaaf also was living in the Phoenix area. When we arrived at Amy's house, I went to drop some stuff off in the kitchen, where a middle-age man stood that I did not know. I reached out to shake his hand and said, "Hi, I'm Bob Ungerman." He shook my hand and said, "Hi Bob Ungerman, I'm Peter Schaaf." What made it special was the WAY that he said it...almost like, "Hi idiot, you've known me for 20 years." Oops.
So Peter, congratulations. As you can imagine, Karen is absolutely ecstatic about speaking with you. The first time I asked, "Do you remember Peter Schaaf?" She looked at me, then passed out from pain and nausea. A few hours later I asked again, she said, "No," then asked me to get the nurse. She's not saying it explicitly, but I think she's trying to tell me that she's really excited about your upcoming conversation. Be sure to send me you phone number soonest. I think she's going to ask for it any minute.
Today is much better than yesterday for Karen. She has already taken two walks, and we have two more to go. I had to coerce her into the first one, but the second one she asked to do herself! She said she feels better when she's walking, rather than laying in bed. She has been complaining of a headache, which may be from being stiff from laying in bed. That or the fact that she just had a kidney transplant.
Karen's mother and sister came to visit earlier. It's hit-or-miss with Karen right now. Sometimes any talking saps her energy...other times she seems a bit more content. I think she had a little of both during her "visitation". Hopefully she will feel a bit better tonight, so she can talk for a bit before Jenny has to travel back to Florida tomorrow.
I don't think Karen is quite ready for visitors. Definitely not tomorrow...possibly on Saturday...I would think definitely on Sunday. Still no flowers, and further discussion with the nurse says even when we are in the hotel (and at home) flowers are not a great idea. They are worried that some germ/parasite/bacteria/fungus/etc? could be on the flowers, and end up infecting Karen. I'll keep asking the question, but hold-off for now. A couple bouquets arrived before I sent out the "no flower" message. They are sitting at the end of the hall. When we go for our walks, we get to see them. They always make her smile.
Bottom line, she's getting better. The pain and nausea are subsiding. She's walking more. She's talking more. And she's smiling more. Which I love.
Cheers!
-Bob
Wednesday, February 16, 2011
Update #13 - Day 1 Post-Transplant - Walking, but still in pain
Quick wrap-up of the days events. In the last 20 hours the alarm has gone off twenty times...........ahhhh..... I kid you not, as I just typed "twenty," the alarm started beeping again! .....ahhhh........... I'm really going to miss that when we leave here.
Karen has been in much pain and had much nausea for the entire day. If she moves, she experiences sharp pain, which is intense enough to make her feel sick. If she uses any of the pain med, it instantly makes her nauseous. So, in trying to avoid the overwhelming nausea, she has been trying to avoid the pain med. Which...makes her nauseous from the pain. And so on. Just can't win!
The greatest challenge for Karen has been trying to sit up, stand, and walk. Who would have guessed that stuff would be tough following a transplant?.?.? But...she's a trooper, and has gone for two short walks (100 feet) today. The toughest part is going from a laying down position to a standing. Because she was under anesthesia for so long last night, they say she needs to cough up some phlegm that developed in the lungs during the procedure. The act of standing, for some reason, induces coughing...which is good...other than the EXTREME PAIN it causes her. The poor woman just shakes from the intensity of the pain. The second walk was better than the first...easier up and down...and almost no coughing. Hopefully tomorrow's walks are frequent and pain free.
Some really GREAT news. Her most current (noon-ish) blood test showed a creatinine level of 2.0!!!!! I know numbers don't mean much, but if you consider that the creatinine level is an indicator of kidney function, In less than 18 hours, Karen recovered close to 10 years worth of kidney function that she had lost! (When I met her it was 1.8 or so.) Next blood test is 0600. Can't wait to see what the level is!
I have very high hopes for tomorrow. I'm confident Karen will be up for a visit from her mother and sister, of which she was not feeling up to today. I'll put $100 down that says Karen will WANT to go for walks, rather than being coerced by the docs, nurses, or myself. And HOPEFULLY, she can start eating some solid foods and clear liquids. I've been holding on to a box of Wheat Thins which she ordered me to have ready. But they look soooooo gooooooood. Just sitting there. Waiting to be enjoyed. Someone should send her story into the Wheat Thins company so they can do one of their recent commercials with her. They can deliver a pallet of Wheat Thin boxes to her hospital room. From what I understand, as long as they're not flowers, the hospital shouldn't have a problem with it.
That's all for now. I'll be sure to update you with her latest creatinine level when we get it. My money is on "1.6". As a tiebreaker I say we'll receive the blood test results at 09:17. If you have a better guess (or any guess) than that, post it as a comment. The winner MAY get a call from Karen if she's up for it. So there it is...post a creatinine LEVEL and TIME...and possibly win a phone call from my beautiful wife.
One thing I am sure of tomorrow...she will not be 'overjoyed' at my plan that has been born out of boredom.
Cheers!
Bob
Karen has been in much pain and had much nausea for the entire day. If she moves, she experiences sharp pain, which is intense enough to make her feel sick. If she uses any of the pain med, it instantly makes her nauseous. So, in trying to avoid the overwhelming nausea, she has been trying to avoid the pain med. Which...makes her nauseous from the pain. And so on. Just can't win!
The greatest challenge for Karen has been trying to sit up, stand, and walk. Who would have guessed that stuff would be tough following a transplant?.?.? But...she's a trooper, and has gone for two short walks (100 feet) today. The toughest part is going from a laying down position to a standing. Because she was under anesthesia for so long last night, they say she needs to cough up some phlegm that developed in the lungs during the procedure. The act of standing, for some reason, induces coughing...which is good...other than the EXTREME PAIN it causes her. The poor woman just shakes from the intensity of the pain. The second walk was better than the first...easier up and down...and almost no coughing. Hopefully tomorrow's walks are frequent and pain free.
Some really GREAT news. Her most current (noon-ish) blood test showed a creatinine level of 2.0!!!!! I know numbers don't mean much, but if you consider that the creatinine level is an indicator of kidney function, In less than 18 hours, Karen recovered close to 10 years worth of kidney function that she had lost! (When I met her it was 1.8 or so.) Next blood test is 0600. Can't wait to see what the level is!
I have very high hopes for tomorrow. I'm confident Karen will be up for a visit from her mother and sister, of which she was not feeling up to today. I'll put $100 down that says Karen will WANT to go for walks, rather than being coerced by the docs, nurses, or myself. And HOPEFULLY, she can start eating some solid foods and clear liquids. I've been holding on to a box of Wheat Thins which she ordered me to have ready. But they look soooooo gooooooood. Just sitting there. Waiting to be enjoyed. Someone should send her story into the Wheat Thins company so they can do one of their recent commercials with her. They can deliver a pallet of Wheat Thin boxes to her hospital room. From what I understand, as long as they're not flowers, the hospital shouldn't have a problem with it.
That's all for now. I'll be sure to update you with her latest creatinine level when we get it. My money is on "1.6". As a tiebreaker I say we'll receive the blood test results at 09:17. If you have a better guess (or any guess) than that, post it as a comment. The winner MAY get a call from Karen if she's up for it. So there it is...post a creatinine LEVEL and TIME...and possibly win a phone call from my beautiful wife.
One thing I am sure of tomorrow...she will not be 'overjoyed' at my plan that has been born out of boredom.
Cheers!
Bob
Update #12 - Day 1 Post-Transplant - Pain and Nausea, but Working Kidney!
Karen's kidney function continues to improve - creatnine level is 2.5! Simply amazing.
Unfortunately, not only is Karen in a LOT of pain, she has a LOT of nausea too. Going in, her worst fear was nausea. She told me today, "I had no idea it could hurt this much," which tells me maybe the pain is kicking her butt more than the nausea. Either way, my poor baby is hurting, please continue to pray for her.
It was about 0100 when Karen was rolled into her room. I was able to lay down by about 0130. Starting at 0200, an alarm went off every hour, on the hour. If I do nothing, the alarm gets louder and louder. I have to "silence" the alarm, then call the nurse. They record her urine output and whatever other checks they need to do. Since I had three large Starbucks yesterday (including one at 10 pm), it wasn't too tough to pop out of bed to take care of things. In fact, I think I was actually sleeping with my eyes open.
The Nephrology team just stopped by. They were very positive. They said everything is happening as expected. The nausea is due in large part to the very strong pain medication she is getting.
Also, we had a quick visit from Suzanne, Karen's transplant coordinator. She told Karen she would tell her all about the kidney donor later (43 yr old man from Texas is all we know)...Karen just isn't up for talking yet. She said it is a GREAT KIDNEY that Karen received.
In thirty minutes they will try to get Karen out of bed to move around a bit. They said that will "kick-start" her body to start functioning normal again. It's funny, she has this incredibly great, strong kidney...now the rest of her body needs to catch up!
As mentioned prior, the hospital does not allow flowers to be kept in transplant patient's rooms. We did have a beautiful bouquet arrive...Karen was able to see them through the door...then they were wheeled off to the penalty box. If you already sent some, don't worry, I will get them to the hotel room which we will move into this weekend or early next week. I will also be sure to show her them through the door!
Other things to note. Karen won't be able to eat solid foods for possibly another day or two. She's pretty bummed about that. I think she would like anything and everything that would make her feel "normal". Also, I don't think she'll be ready for visitors until at least Friday. I will be sure to update you on that tomorrow.
Keep praying--
-Bob
Unfortunately, not only is Karen in a LOT of pain, she has a LOT of nausea too. Going in, her worst fear was nausea. She told me today, "I had no idea it could hurt this much," which tells me maybe the pain is kicking her butt more than the nausea. Either way, my poor baby is hurting, please continue to pray for her.
It was about 0100 when Karen was rolled into her room. I was able to lay down by about 0130. Starting at 0200, an alarm went off every hour, on the hour. If I do nothing, the alarm gets louder and louder. I have to "silence" the alarm, then call the nurse. They record her urine output and whatever other checks they need to do. Since I had three large Starbucks yesterday (including one at 10 pm), it wasn't too tough to pop out of bed to take care of things. In fact, I think I was actually sleeping with my eyes open.
The Nephrology team just stopped by. They were very positive. They said everything is happening as expected. The nausea is due in large part to the very strong pain medication she is getting.
Also, we had a quick visit from Suzanne, Karen's transplant coordinator. She told Karen she would tell her all about the kidney donor later (43 yr old man from Texas is all we know)...Karen just isn't up for talking yet. She said it is a GREAT KIDNEY that Karen received.
In thirty minutes they will try to get Karen out of bed to move around a bit. They said that will "kick-start" her body to start functioning normal again. It's funny, she has this incredibly great, strong kidney...now the rest of her body needs to catch up!
As mentioned prior, the hospital does not allow flowers to be kept in transplant patient's rooms. We did have a beautiful bouquet arrive...Karen was able to see them through the door...then they were wheeled off to the penalty box. If you already sent some, don't worry, I will get them to the hotel room which we will move into this weekend or early next week. I will also be sure to show her them through the door!
Other things to note. Karen won't be able to eat solid foods for possibly another day or two. She's pretty bummed about that. I think she would like anything and everything that would make her feel "normal". Also, I don't think she'll be ready for visitors until at least Friday. I will be sure to update you on that tomorrow.
Keep praying--
-Bob
Update #11 - Recovery
I was able to see my beautiful wife! Her kidney function is already improving! Her creatnine level was already down to 2.7 (from a high of 3.7 two weeks ago). The Doc said that below 1.4 would be considered normal, so 2.7 is absolutely outstanding.
Unfortunately, Karen said she is in a lot of pain. "The worst I've ever felt." But before she went in for surgery, the only thing she was worried about was nausea. Guess what? No nausea! She is VERY happy about that. I told her everyone knew she made it through the surgery. She said, "Tell my friends and family I love them."
For those that already tried to send flowers, cancel the order! Or at least put it on hold. The nurse said she can't have ANY balloons or flowers yet. Maybe in a couple days. It's surprising. Do they assume that I'm cleaner than a balloon? How much bacteria can a balloon really pick up anyway?
When Karen's ready to talk (probably some time tomorrow) I'll put the word out. Till then, don't be afraid to give me a call if you're hankering for an update. 801-660-7661.
Unfortunately, Karen said she is in a lot of pain. "The worst I've ever felt." But before she went in for surgery, the only thing she was worried about was nausea. Guess what? No nausea! She is VERY happy about that. I told her everyone knew she made it through the surgery. She said, "Tell my friends and family I love them."
For those that already tried to send flowers, cancel the order! Or at least put it on hold. The nurse said she can't have ANY balloons or flowers yet. Maybe in a couple days. It's surprising. Do they assume that I'm cleaner than a balloon? How much bacteria can a balloon really pick up anyway?
When Karen's ready to talk (probably some time tomorrow) I'll put the word out. Till then, don't be afraid to give me a call if you're hankering for an update. 801-660-7661.
Tuesday, February 15, 2011
Update #10 - New KIDNEY!!!!!!
That's it! The kidney is in and working! I just spoke to the Doc. He said everything went great. The kidney is on her left side, he only had to make the one incision (he decided to go straight to the left side). He said as soon as he hooked up the ureter to the bladder (I think that's how it gets hooked up, but a lot of info came at me pretty quick), it started making urine. It's working!
I can't wait to tell you all about Karen's surgeon. For now, all you need to know is his name is Dr. Veale, and he is an angel. More to follow on him in the next couple days.
God has provided, as we knew he would. Karen and I deeply appreciate all the prayers.
I hope to see Karen in a couple of hours. She should be walking tomorrow! I will update with room number, expected recovery timeline, etc early tomorrow.
Sleep well.
Love you all!
-Bob
I can't wait to tell you all about Karen's surgeon. For now, all you need to know is his name is Dr. Veale, and he is an angel. More to follow on him in the next couple days.
God has provided, as we knew he would. Karen and I deeply appreciate all the prayers.
I hope to see Karen in a couple of hours. She should be walking tomorrow! I will update with room number, expected recovery timeline, etc early tomorrow.
Sleep well.
Love you all!
-Bob
Update #9 - Sewing Her Up!
Just spoke with the nurse. She said Karen did good! They are sewing her up! The doc should be down in 20 minutes with details!
Update #8 - Still Waiting
Getting close to 4 hours. No word yet. Doctors expected around 4 hours, plus or minus 2 hours. Who would think a kidney transplant could be so complicated?
The plan for the surgery was to first try to put the kidney in her right side (below the current piece-o-crap kidney). They knew they might end up cutting her open on the right side, poking around a bit, then if there isn't room open her up on the left side where there will definitely be room. They had a reason for not going straight to the left side, but I forget why.
So Karen's mom, sister, and I are sitting in the waiting room eagerly awaiting our 'buzzer' to go off. It's one of those things you get when you wait for a table at a restaurant! Supposedly it will buzz, light-up, etc - then we check in at the desk. Then they will send someone down to update us.
Obviously the anticipation is fairly brutal right now. Tough to think a bunch of people have been standing over Karen for hours. I wonder if they take breaks? Anyone know??
Hopefully we'll have more news soon!
The plan for the surgery was to first try to put the kidney in her right side (below the current piece-o-crap kidney). They knew they might end up cutting her open on the right side, poking around a bit, then if there isn't room open her up on the left side where there will definitely be room. They had a reason for not going straight to the left side, but I forget why.
So Karen's mom, sister, and I are sitting in the waiting room eagerly awaiting our 'buzzer' to go off. It's one of those things you get when you wait for a table at a restaurant! Supposedly it will buzz, light-up, etc - then we check in at the desk. Then they will send someone down to update us.
Obviously the anticipation is fairly brutal right now. Tough to think a bunch of people have been standing over Karen for hours. I wonder if they take breaks? Anyone know??
Hopefully we'll have more news soon!
Update #7 - In Surgery
Karen has been in surgery for just over two hours now. No information to pass on. Hopefully in an hour or so.
Keep Praying!
-Bob
Keep Praying!
-Bob
Update #6 - Day of Transplant - Pre-Surgery - UCLA Medical Center
Wow! Things are moving fast. Karen was told to check in at UCLA at 1330. At 1230 she received a call asking, “Where are you?” What the!?!?!?! Apparently they wanted her here a bit earlier, but nobody called her. Whoops! We’re here now, and there doesn’t seem to be any rush.
Other than the phone call, Karen had another surprise today. I left the house this morning about one hour before Karen and her mom (we drove two cars since we have a rental for visiting family). On the way I stopped to pick up a special guest star. Barbara and I arranged to have everyone meet at the end of the Santa Monica Pier at 1130. I gave Karen a big hug, asked how her heart was, then had her look to her left. There on the bench, looking like a homeless person feeding the pigeons, was Karen’s beautiful sister, Jenny! Jenny had a major foot surgery last week and didn’t think she would make it out. But two days ago, she felt a bit better, so Barbara and her worked the magic to make it happen. Needless to say, Karen was VERY surprised.
So it’s 1330, and they just told Karen she’s not supposed to be here ‘till 1600. Oh well. Her surgery is scheduled for 1630, so we have plenty of time to wait. If Karen’s lucky, maybe they’ll find her a bed so she can take a nap! Anyone that knows Karen, knows that would be heaven.
One more funny thing. For those of you that know me as “Boucher”, you probably know how much “high-quality H-2-0” means to me. And of course, how important it is to me that Karen stays hydrated. If you don’t know the whole story – the gist of it is – Karen doesn’t like to drink water, Karen gets dehydrated, Bob gets upset that Karen doesn’t stay hydrated, Bob and Karen get in an argument, following argument Karen drinks water for two days, then Karen doesn’t drink water, Karen gets dehydrated, Bob gets upset, etc, etc, etc. LATELY, Karen has been doing WONDERFUL at staying hydrated! 6-8 glasses per day, just as the doctor ordered. The funny part is that Karen was told to NOT DRINK ANYTHING AFTER 1100! At 1245 I see her taking a swig from her bottled water, after she just polished off a liter of Gatorade! I asked her when she was supposed to stop, and her jaw almost hit the floor. Hydration and electrolytes – even when against the doctor’s orders?!?! I was so proud of her! This is the best day of my life!!
Okay…It’s 1336 and we just got an update. Apparently Karen’s kidney is OUT OF THE DONOR, and sitting in Texas waiting on the flight over here! If anyone in Texas wants to stop by and say “hi” to it, or sign it or something, you’re running out of time, so hop to it.
Okay...now it's 1355 and we are back in a pre-op bed. Hopefully I can post this before we get any more updates.
Hopefully I’ll be able to send one more update prior to the surgery.
Love to you all. Your prayers, thoughts, and words of encouragement have been a GREAT source of comfort. Please keep praying.
-Bob
Sunday, February 13, 2011
Update #5 - Two Days to Go!
Tic Toc!
Busy, busy, busy. The last week has flown by - we've hardly been able to catch our breath. As you can see by the times of my posts, there are just not enough hours in the day to take care of everything.
Everything is still on track for the 15th. This week has been spent tying-up loose ends, trying to keep Karen and her mother from catching colds, and ensuring things are all set on the home-front in preparation for our 2-week 'trip'.
Some great things from this week:
- Picked up Karen's mother from the airport
- Karen's mother received a "go-ahead" for her kidney donation on the 23rd
- Austin turned 14! Had the "best birthday ever", which included video games until 2 a.m. on his brand new flat screen T.V., then paintball with friends the next day using his brand new paintball gun that shoots 12-15 paintballs per second....per SECOND?...what the h?
- I got the Camaro running
- Lena had a glazed donut
- Karen and I had Indian food for date night and met Mahli!
- We had two wonderful friends stop by with lunch
- I saw J.T. jump clear over Lena when she rode her bike at him completely out of control. He was like Michael Jordan with the grace of a very hairy ballerina
- We picked up my mother from the airport tonight!
Some not so great things from this week:
- Lena got VERY sick - possibly bronchitis or the croup.?.? Whatever it is, it sounded like there was a gurgling swamp in her chest
- Karen had to wear a heart monitor for most the week
- We didn't even get close to finishing everything we wanted to this week
- Lena threw up on her carpet
- Elvis ate 10 glazed donuts
- Elvis threw up on the tile
- One of the friends that stopped by with lunch had a cold so didn't stay for lunch :(
- I didn't get the Camaro running. I just wanted to see what it looked like to type "I got the Camaro running"
I wish I had only good things to report. I wish I only had to say "Karen is doing great!" The truth of the matter is that Karen has been having a rather difficult week. The reality of the situation is setting in. For the last 30 years, Karen has known that she would one day need a kidney transplant. You'd think right now it would be nothing but great feelings. Feelings of relief. Feelings of jubilation. In reality, it's scary! It's a major surgery that isn't guaranteed to go well. We have such high hopes. Hopes that after the surgery, every negative feeling that Karen has (pain, fatigue, etc) will go away. It's tough to think, "what if they don't go away? What if all the problems are still there? What if the kidney gets rejected?" All these thoughts on top of a ridiculously busy week have been absolutely overwhelming.
I don't mean to be a negative Nancy, but I do want this blog to be an honest reflection of our reality. Words of encouragement and PRAYERS are greatly appreciated and needed right now. Post a comment, give Karen a call, shoot a text, stop by the house, Facebook, and most of all, PRAY.
We plan to leave for LA on Monday around 1200. My mom, Jan, is an angel, and will be staying with Austin and Lena. She will fill in for Karen and I while we are getting Karen's 'tune-up' done. The surgery will take place Tuesday afternoon, assuming all goes well.
I'll try to update before the surgery.
Cheers,
Bob
Busy, busy, busy. The last week has flown by - we've hardly been able to catch our breath. As you can see by the times of my posts, there are just not enough hours in the day to take care of everything.
Everything is still on track for the 15th. This week has been spent tying-up loose ends, trying to keep Karen and her mother from catching colds, and ensuring things are all set on the home-front in preparation for our 2-week 'trip'.
Some great things from this week:
- Picked up Karen's mother from the airport
- Karen's mother received a "go-ahead" for her kidney donation on the 23rd
- Austin turned 14! Had the "best birthday ever", which included video games until 2 a.m. on his brand new flat screen T.V., then paintball with friends the next day using his brand new paintball gun that shoots 12-15 paintballs per second....per SECOND?...what the h?
- I got the Camaro running
- Lena had a glazed donut
- Karen and I had Indian food for date night and met Mahli!
- We had two wonderful friends stop by with lunch
- I saw J.T. jump clear over Lena when she rode her bike at him completely out of control. He was like Michael Jordan with the grace of a very hairy ballerina
- We picked up my mother from the airport tonight!
Some not so great things from this week:
- Lena got VERY sick - possibly bronchitis or the croup.?.? Whatever it is, it sounded like there was a gurgling swamp in her chest
- Karen had to wear a heart monitor for most the week
- We didn't even get close to finishing everything we wanted to this week
- Lena threw up on her carpet
- Elvis ate 10 glazed donuts
- Elvis threw up on the tile
- One of the friends that stopped by with lunch had a cold so didn't stay for lunch :(
- I didn't get the Camaro running. I just wanted to see what it looked like to type "I got the Camaro running"
I wish I had only good things to report. I wish I only had to say "Karen is doing great!" The truth of the matter is that Karen has been having a rather difficult week. The reality of the situation is setting in. For the last 30 years, Karen has known that she would one day need a kidney transplant. You'd think right now it would be nothing but great feelings. Feelings of relief. Feelings of jubilation. In reality, it's scary! It's a major surgery that isn't guaranteed to go well. We have such high hopes. Hopes that after the surgery, every negative feeling that Karen has (pain, fatigue, etc) will go away. It's tough to think, "what if they don't go away? What if all the problems are still there? What if the kidney gets rejected?" All these thoughts on top of a ridiculously busy week have been absolutely overwhelming.
I don't mean to be a negative Nancy, but I do want this blog to be an honest reflection of our reality. Words of encouragement and PRAYERS are greatly appreciated and needed right now. Post a comment, give Karen a call, shoot a text, stop by the house, Facebook, and most of all, PRAY.
We plan to leave for LA on Monday around 1200. My mom, Jan, is an angel, and will be staying with Austin and Lena. She will fill in for Karen and I while we are getting Karen's 'tune-up' done. The surgery will take place Tuesday afternoon, assuming all goes well.
I'll try to update before the surgery.
Cheers,
Bob
Monday, February 7, 2011
Update #4 - Barbara's Pre-Op - 7 Feb
Busy week! Karen and I spent all week preparing for her mother's arrival. Saturday afternoon we were finishing up the last of the "to-do" list, then we drove to Ontario, CA to pick Barbara up at the airport late that evening. It felt so great to hug the woman that is giving a kidney, so Karen can get one in return!
Today Barbara had her pre-op appointments and Karen had a cardiologist appointment at UCLA. I was supposed to go with, but Lena became sick yesterday, so stayed home with her. Very disappointing to not make a doctor's appointment, but Lena needed her daddy.
So...I mentioned Karen had a cardiologist appointment. If you've read the previous updates, you will remember that Karen has had some odd things happening with her heart, specifically, heart palpitations. Earlier this week, she raised the ante a bit, and awoke from a dead sleep with her heart racing as if she just finished a sprint. Her heart rate has been very low recently; 50-60 beats per minute resting heart rate. Two weeks ago, in the emergency room, I noticed when she fell asleep, her heart rate dropped below 50 bpm, which set off an alarm. This alarm would jolt her a bit, taking her heart rate back above 50. Karen thought when she awoke from the sleep that possibly her heart rate had dropped very low, and her body jolted her awake. Seems to make sense to me.
Because of the recent heart issues, Karen was referred to the UCLA cardiologist. When she told him (today) of her being awakened from sleep, he decided to order a 30 day heart monitor WHICH WOULD DELAY THE TRANSPLANT!!!!! That was NOT a fun call to receive from Karen. Are you kidding me??? Back to square one???? Ahhhhhhhhhhhhhhhhhhhhh!!!!!!
Apparently Karen's cardiologist and transplant surgeon had a discussion, and they decided the best course of action is...........to go ahead with the transplant. God is good my friends! VERY unnerving 45 minutes today. So all is well on Karen's transplant front. Her mother's donation on the other hand, is still in the works.
Unfortunately, a day or two before traveling to California, Barbara found out she was NOT a good match to the recipient which was scheduled for the 25th of February. It was very heartbreaking for Barbara, as she has put her life on hold, to give the gift of life to others. Today she met with the doctors to discuss the situation.
First on her agenda was more blood tests. While in the lab giving blood she saw Sidney Portier! That will probably only impress one reader of this post, our dear friend Tammy. After her brush with fame, she met with the transplant team, which informed her they are shooting to have her donate on the 23rd of this month. Please say a prayer and keep your fingers crossed that this will work out. As if giving an organ is not stressful enough, imagine being two weeks away, and not knowing exactly when/if it's going to happen!
For now, Karen is all set. My next post should be as we get ready to leave for the hospital (Monday or Tuesday). If we receive an update on Barbara, I'll be sure to post.
Cheers,
Bob
Today Barbara had her pre-op appointments and Karen had a cardiologist appointment at UCLA. I was supposed to go with, but Lena became sick yesterday, so stayed home with her. Very disappointing to not make a doctor's appointment, but Lena needed her daddy.
So...I mentioned Karen had a cardiologist appointment. If you've read the previous updates, you will remember that Karen has had some odd things happening with her heart, specifically, heart palpitations. Earlier this week, she raised the ante a bit, and awoke from a dead sleep with her heart racing as if she just finished a sprint. Her heart rate has been very low recently; 50-60 beats per minute resting heart rate. Two weeks ago, in the emergency room, I noticed when she fell asleep, her heart rate dropped below 50 bpm, which set off an alarm. This alarm would jolt her a bit, taking her heart rate back above 50. Karen thought when she awoke from the sleep that possibly her heart rate had dropped very low, and her body jolted her awake. Seems to make sense to me.
Because of the recent heart issues, Karen was referred to the UCLA cardiologist. When she told him (today) of her being awakened from sleep, he decided to order a 30 day heart monitor WHICH WOULD DELAY THE TRANSPLANT!!!!! That was NOT a fun call to receive from Karen. Are you kidding me??? Back to square one???? Ahhhhhhhhhhhhhhhhhhhhh!!!!!!
Apparently Karen's cardiologist and transplant surgeon had a discussion, and they decided the best course of action is...........to go ahead with the transplant. God is good my friends! VERY unnerving 45 minutes today. So all is well on Karen's transplant front. Her mother's donation on the other hand, is still in the works.
Unfortunately, a day or two before traveling to California, Barbara found out she was NOT a good match to the recipient which was scheduled for the 25th of February. It was very heartbreaking for Barbara, as she has put her life on hold, to give the gift of life to others. Today she met with the doctors to discuss the situation.
First on her agenda was more blood tests. While in the lab giving blood she saw Sidney Portier! That will probably only impress one reader of this post, our dear friend Tammy. After her brush with fame, she met with the transplant team, which informed her they are shooting to have her donate on the 23rd of this month. Please say a prayer and keep your fingers crossed that this will work out. As if giving an organ is not stressful enough, imagine being two weeks away, and not knowing exactly when/if it's going to happen!
For now, Karen is all set. My next post should be as we get ready to leave for the hospital (Monday or Tuesday). If we receive an update on Barbara, I'll be sure to post.
Cheers,
Bob
Wednesday, February 2, 2011
Update #3 - Pre-Op Appointment - 31 Jan
Karen is feeling great today. We've had a busy couple days attempting to get everything in order prior to the transplant. Only two weeks away! Aaaaaahhhhhhhh!
Yesterday (31 Jan) we had Karen's pre-op appointment at UCLA Medical Center. We had to leave the house at 0445 to make a 0700 appointment at the lab. Ouch. Unfortunately we ran into LA traffic which added an unplanned 40 minutes to the drive. Who would have thought there would be traffic in LA at 7 in the morning?
After Karen's lab work, we went upstairs to the Nephrology Office where we met with the transplant coordinator. She gave us the run-down of how things will work immediately before the surgery. We then met with the director of the Kidney Transplantation division at UCLA. It's a good feeling when the attending physician is just about the number one guy in the whole world at what he does. Lastly we met with Karen's surgeon. It's pretty neat to talk with the guy that in two weeks will be accomplishing such an amazing procedure. I have so much to say about this doctor, but I'll save that for another post. What I will say is that he has an incredible way of putting us (most importantly Karen) at ease. Karen and I have been a bit "stressed" as of late, as you can imagine. After spending quite some time with him, we both left with smiles on our faces, limitless sense of hope, and an agreement that, "that guy is freakin' awesome." We are lucky and blessed to be where we are.
As I mentioned, we have been a bit stressed lately. You can imagine we have been working through about a hundred things prior to the surgery. Kids, dog, family, travel, lodging, Karen's Master's degree, dance, basketball, couches, work, vehicles, dead batteries in truck (really? yep.), one-week plan, two-week plan, one-month plan. Aaaahhhh! Oh yeah, and the kidney transplant.
In reality, we have nothing to complain about. We are stationed at the best base we could possibly be stationed for Karen to have a kidney transplant. We are surrounded by dozens of friends that will drop what their doing to help us. We are part of an Air Force family that WILL NOT allow undue hardship or stress to take place (my work has been incredibly understanding about the situation), our family is behind us 100%, and we have many wonderful people praying for Karen's health. Really - how lucky are we?
Karen's mother will arrive on Saturday and stay with us until the 14th or 15th when we head down to L.A. for the surgery. Her mother has her pre-op appointment on Feb 7th, so I'll update after that.
Thanks for reading, and please keep praying.
-Bob
Yesterday (31 Jan) we had Karen's pre-op appointment at UCLA Medical Center. We had to leave the house at 0445 to make a 0700 appointment at the lab. Ouch. Unfortunately we ran into LA traffic which added an unplanned 40 minutes to the drive. Who would have thought there would be traffic in LA at 7 in the morning?
After Karen's lab work, we went upstairs to the Nephrology Office where we met with the transplant coordinator. She gave us the run-down of how things will work immediately before the surgery. We then met with the director of the Kidney Transplantation division at UCLA. It's a good feeling when the attending physician is just about the number one guy in the whole world at what he does. Lastly we met with Karen's surgeon. It's pretty neat to talk with the guy that in two weeks will be accomplishing such an amazing procedure. I have so much to say about this doctor, but I'll save that for another post. What I will say is that he has an incredible way of putting us (most importantly Karen) at ease. Karen and I have been a bit "stressed" as of late, as you can imagine. After spending quite some time with him, we both left with smiles on our faces, limitless sense of hope, and an agreement that, "that guy is freakin' awesome." We are lucky and blessed to be where we are.
As I mentioned, we have been a bit stressed lately. You can imagine we have been working through about a hundred things prior to the surgery. Kids, dog, family, travel, lodging, Karen's Master's degree, dance, basketball, couches, work, vehicles, dead batteries in truck (really? yep.), one-week plan, two-week plan, one-month plan. Aaaahhhh! Oh yeah, and the kidney transplant.
In reality, we have nothing to complain about. We are stationed at the best base we could possibly be stationed for Karen to have a kidney transplant. We are surrounded by dozens of friends that will drop what their doing to help us. We are part of an Air Force family that WILL NOT allow undue hardship or stress to take place (my work has been incredibly understanding about the situation), our family is behind us 100%, and we have many wonderful people praying for Karen's health. Really - how lucky are we?
Karen's mother will arrive on Saturday and stay with us until the 14th or 15th when we head down to L.A. for the surgery. Her mother has her pre-op appointment on Feb 7th, so I'll update after that.
Thanks for reading, and please keep praying.
-Bob
Thursday, January 27, 2011
Update #2 - 27 Jan, 2200 - Edwards AFB, CA
Karen is doing well. She is feeling better since the last update. Her headaches have completely subsided, but the heart palpitations are ongoing, although much less. Today she saw the cardiologist who hooked her up to a heart monitor "halter". It's a contraption that's taped to her chest. She can wear normal clothes over the halter, but it's big and bulky. It looks like she's either looking for a game of laser tag, or has part of a transformer costume underneath her clothes. Either way, it's awesome. She gets it off tomorrow afternoon (sts).
As mentioned, Karen and her mom are taking part in the Kidney Exchange at UCLA. The following web page will clear up most questions, although Barbara's comment on the "background" post was spot-on.
http://transplants.ucla.edu/body.cfm?id=112
Karen's transplant is still on for 15 Feb, although her mom may not donate her kidney until 25 Feb. The recipient of Karen's mother's kidney has unexpectedly become ill. So ill in fact, that she can not accept a kidney on 15 Feb. It makes me so sad. So sad to know that with the drop of a hat, a person's condition can change so much that they cannot accept a life saving procedure. The woman, whose name I do not know, is certainly in our prayers. I ask she is in yours too.
So, Karen's mom will be donating her kidney 10 days after Karen's transplant. Usually, UCLA will NOT do the exchange program on different days, as they do not want to take the chance of someone backing out of their promise to donate. In the case of Karen's mother, they trust her commitment to giving the gift of life, even to someone she has never met. They see, as I see, her wonderful heart.
Speaking of wonderful hearts - thanks again to Tammy for making a wonderful spaghetti dinner following our trip to the ER. We love you Tammy!
FYI - I think I posted an RSS feed. I don't know what an RSS feed is, but a friend of mine that doesn't speak much English requested it. I think the feed can be downloaded to a reader, then translated into a different language. Enjoy, Jose.
Thanks for all your notes of encouragement!
-Bob
As mentioned, Karen and her mom are taking part in the Kidney Exchange at UCLA. The following web page will clear up most questions, although Barbara's comment on the "background" post was spot-on.
http://transplants.ucla.edu/body.cfm?id=112
Karen's transplant is still on for 15 Feb, although her mom may not donate her kidney until 25 Feb. The recipient of Karen's mother's kidney has unexpectedly become ill. So ill in fact, that she can not accept a kidney on 15 Feb. It makes me so sad. So sad to know that with the drop of a hat, a person's condition can change so much that they cannot accept a life saving procedure. The woman, whose name I do not know, is certainly in our prayers. I ask she is in yours too.
So, Karen's mom will be donating her kidney 10 days after Karen's transplant. Usually, UCLA will NOT do the exchange program on different days, as they do not want to take the chance of someone backing out of their promise to donate. In the case of Karen's mother, they trust her commitment to giving the gift of life, even to someone she has never met. They see, as I see, her wonderful heart.
Speaking of wonderful hearts - thanks again to Tammy for making a wonderful spaghetti dinner following our trip to the ER. We love you Tammy!
FYI - I think I posted an RSS feed. I don't know what an RSS feed is, but a friend of mine that doesn't speak much English requested it. I think the feed can be downloaded to a reader, then translated into a different language. Enjoy, Jose.
Thanks for all your notes of encouragement!
-Bob
Tuesday, January 25, 2011
Update #1 - 25 Jan, 0030 - Palmdale Regional Medical Center
All is well, although I write this update from the side of Karen’s bed in the Palmdale Regional Medical Center’s Emergency Room. Long story short…last week Karen complained of heart palpitations and a headache. On Friday she had a CT scan and a “lumbar puncture” to test for blood in the cerebral spinal fluid. Both were negative, but unfortunately she developed a “spinal headache”, associated with the lumbar puncture. This same scenario happened while in Texas quite a few years back. The treatment was to get a couple bags of IV fluid, then a bit of rest.
She just emptied an IV bag, and the ER doc is signing her release paperwork. A day or two of rest and plenty of fluids, and she should be good as new. Or at least as good as someone in end-stage renal failure who is soon to have a kidney transplant.
Speaking of which!!!!! On our way down to the ER (40 minute drive) Karen received a call from her transplant coordinator (Suzanne). The date they decided on for the transplant is 15 February 2011! Three weeks away. Holy crap.
Special thanks today to Tammy Thomas, who picked Lena up from school after Karen and I left for the ER. Also to Jen and Moneyshot Beich who not only fed our children at their home this evening, but to Moneyshot as he broke into our home at midnight (with a ski mask) to ensure Lena would sleep with her big brother so she wouldn’t wake up scared (since mommy and daddy aren’t home). I thought it wonderful to find out that Austin was still up reading, as he didn’t want to fall asleep in case Lena woke up. What a good brother. As far as our parenting goes, we could probably do a bit better. Oh yeah, and get a freakin’ home phone.
-Bob
Background
Karen was diagnosed with Polycystic Kidney Disease (PKD) shortly after her father passed away from complications with the same disease. She was only three years old. Her young mother was left to raise Karen, knowing that one day Karen would have to fight her own battles with the disease. And here we are, only weeks away from a kidney transplant.
Childhood
After being diagnosed with PKD, Karen lived a completely normal childhood, with the occasional doctor’s visit to see a Nephrologist (kidney specialist). During her teen years it was noted her specific form of PKD was a very aggressive one, attacking Karen’s kidneys more quickly than the “normal” strain. See www.pkdcure.org for information regarding the disease. In fact, the aggressive form of the disease (which affects her the same as it did her father) has caused her kidneys to grow to the size of footballs (10-12 pounds each – compared to ours being the size of our fist!). This was the size of one of her father’s kidneys when he had it removed in his early twenties, just a few years prior to passing away. George Michael Thompson, Karen’s father, died from when an aneurysm hemorrhaged in his brain. Unfortunately, doctors did not know then, what they know now about PKD. Clearly with the knowledge gained through research studies has greatly improved the care of PKD patients.
Sheppard AFB, TX
When I met Karen in 1999, she had a two-and-a-half year old boy, a Z-28 Camaro, and 70% kidney function. I was hooked! I was commissioned in the Air Force at the end of 1999, left for pilot training (in Texas) in mid-2000, and was joined by Karen and Austin in 2001 after I tricked her into marrying me. Since then I have dragged her around the United States, greatly complicating her medical care, but somehow everything has worked out better than we could have ever hoped. We have many people to say “Thank You” to along the way, but it’s first fitting to acknowledge all of the Air Force Flight Surgeons (Flight Docs) that have ENSURED Karen had world-class care, even though we were not stationed in world-class locations. In general, the Flight Docs would take a quick look at Karen and say “Well, we’re not taking care of you here. Do you have a doctor in mind?” The Flight Docs helped us navigate the Air Force insurance (TRICARE) program to make possible doctor visits to preeminent PKD research doctors whenever possible.
While stationed at Sheppard Air Force Base in Texas, Dr. (Captain) “Rusty” Gore not only went out of his way to make sure Karen was taken care of anytime she had a minor complication, but also enabled us to be seen at the University of Oklahoma’s renal care center. There, Doctors Haragsim and Cowley cared for Karen, and provided much of the inspiration for her to earn her Undergraduate Degree in Molecular Cellular Biology. A degree she earned so she could better understand the disease which afflicts her, and that which took away her father. We left Sheppard AFB in 2005. After many ups and downs, Karen’s kidney function was approximately 60% upon our departure.
Luke AFB, AZ
We arrived at Luke AFB in the summer of 2005. It was 117 degrees the day we arrived and Karen was six months pregnant. Ouch. On 9 September 2005 we were blessed with a beautiful baby girl, Lena Marie Ungerman. Following the pregnancy Karen’s kidney function dropped to approximately 40%. As if this wasn’t bad enough, in October Karen began to complain of a constant dull headache that she had since Lena’s birth. Karen was worried of an aneurysm, as this is what took her father’s life years before, and is related to the progression of PKD. Initial tests ordered by base doctors came back negative. She felt she was not properly tested, and raised her concerns not to the specialist, but to another outstanding Flight Doc, “Snapper”. Snapper ordered a more accurate (higher resolution) CT scan. In November, her doctor notified her that they discovered a brain aneurysm, which would require surgery.
Another huge thank you has to go out to Lt Col Scott “Rolls” Pleus, who was my squadron commander at the time. He called me at home the evening we received the difficult news, and told me, “Don’t come in to work tomorrow, the next day, or the rest of this week. If you can make it back sometime this month, that’s fine, but it’s not your job right now. Your job isn’t to come in to check the schedule, your job isn’t to open books to study (I was learning to fly the F-16), your job is to take care of your family. Once you’ve done that, and your wife is taken care of, come back to work.” Seriously - How great is that?
Once again, the Air Force Flight Docs ensured we received world-class medical care, sending Karen to Dr. Zabramski. People travel from all over the world to see Dr. Zabramski, who recently provided care for Brett Michaels (yes, THE Brett Michaels from Poison) following his aneurysm a year or so back. Karen’s brain surgery went as routine as brain surgery can go. No complications, five days in intensive care, another couple days in “regular” care, then back home. In the weeks and months that followed, Karen made a full recovery from the very thing that took her father at such a young age. Thank you modern medicine.
Hill AFB, UT
We left Arizona and arrived at Hill AFB, Utah in April of 2006. Karen’s kidney function was approximately 45%. Again, I cannot say enough of how the Flight Doc’s have gone out of their way to help. “Rock” Ewing, at times, seemed as though he was Karen’s personal physician. Always taking calls from her whether he was on-duty/on-call or not.
Some excitement happened for Karen when she got very sick in the winter of 2008. Testing at the University of Utah revealed her kidney function had dropped to slightly below 20%, then settled around 22-24%. Yikes. Unfortunately, I was in Iraq at this time. This sudden drop in kidney function prompted the doctors to refer Karen to the University of Utah transplant team. They guessed the transplant would happen within one year. Unfortunately, I had an assignment which would assign me elsewhere during the impending transplant. Again, there were some key AF leaders that truly made a difference in our family. Lt Col “Bluto” Izzi and Col “JR” Langford went to bat and were able to delay the assignment. Fortunately, the transplant did not come that year, but it was another example of Air Force people going above and beyond to take care of their fellow Airmen’s families.
Remember that young mother that was left to raise Karen? That young mother is Barbara Ann Smith, and she is an angel. She lived her life knowing that she would one day give a kidney to Karen. When doctors said it was time to start testing, Barbara didn’t hesitate. Following months of testing, doctors informed us that she was a match! What glorious news. Better still, Karen’s kidney function was maintaining steady at 20ish%. We left Utah and travelled to Edwards AFB, California in November of 2009, kidneys huge, but hangin’ on.
Edwards AFB, CA
An assignment to Edwards AFB was truly a godsend. Located 98 miles northeast of UCLA Medical Center, it enables Karen to be under the care of the university’s world-class physicians. The past year has brought numerous ups and downs, with kidney function dropping as low as 13ish%. The UCLA medical care has been top-notch, but unfortunately requires a two-hour drive. Small price to pay for piece-of-mind. Karen’s mother was retested, and again proved a “match” to Karen, more accurately, the doctors termed her a “half-match”.
I don’t know the true meaning of a full-match versus a half-match, but here’s how I understand it: a half-match is perfectly acceptable as a donor, but if Karen receives a half-match kidney, it has a slightly higher chance of being rejected, and Karen would need to take more medications following the transplant. Bottom line though, it is still the gift of life. To make a good thing even better, Karen’s transplant surgeon, Dr. Veal, developed a program called the “Kidney Exchange”. Basically, Karen and her mother get placed into a database as a “pair”. The nationwide database looks for another pair that matches that of Karen and her mother. Matches…yet opposite. Meaning Karen would be a “full-match” to the donor of the other pair. And Karen’s mother would be a “full-match” to the person needing the kidney in the other pair. Brilliant!
Last month we received news that Karen and her mom have been matched to another “pair” somewhere in the eastern United States. Since then numerous blood tests have been accomplished to ensure everyone is healthy and a match.
Which takes us to today:
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