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Saturday Morning

Karen is more alert today. The doctors just came and talked with us. The CT confirmed that she has several small PE's (blood clots) in her lungs. They will increase her heparin to dissolve the clots and to try to prevent more but they have to be careful since this is a blood thinner. With her recent surgery this could cause bleeding. They are also going to do dialysis today and start her on new antibiotics to prevent infection in her lungs where there is fluid from yesterday's events.

The good news is these were small clots that injured the lungs but did not do major damage and is reversible. They indicated that they could probably remove her breathing tube now, but to be cautious they will leave that in for another day. That is very uncomfortable but Karen nodded her head in agreement about leaving it in a little longer.

One of the concerns is the source of the clots so they are bringing in a vascular doctor to look at her and make recommendations.

Neat story: One of the residents named Chris was thankfully outside her room with another resident yesterday when all this happened. The two of them were the ones who took care of her including getting her breathing tube in quickly and getting her oxygen. This morning the head of the transplant team (Dr. Stratta) had his entourage with him including Chris. During the visit Karen motioned that she wanted to write something (she can't talk with all the tubes down her throat). She scribbled out "Chris saved me". We gave the note to Chris and Dr. Stratta said, "Chris, you need to put that in your scrapbook! I guess I can't fire you today". I know this made Chris's day.

I don't expect much to change today but will update if anything changes. Thanks to all for your prayers from Winston-Salem, Atlanta, Athens, South Carolina, Dobson, Texas and even Uganda!

Rusty

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Thanks to Blake for getting the blog back up to date. This will certainly lighten my load trying to keep everybody updated.

Here is what has happened today:

Karen had some kind of event this afternoon around 4pm and is in ICU. She had difficulty breathing, high BP and high heartrate. They had to intubate her (breathing tube) and rushed her to ICU. They believe it is a pulmonary embolus (PE or bloodclot in her lungs). They are running a bunch of tests to rule out heart, etc and to confirm it is a PE. If it is a PE they will increase her heparin (blood thinner) which should dissolve the clot and she should improve in 24-48 hours. She is heavily sedated but nodding her head when asked questions and the doctors said when this happened she was reponding appropriately to instructions so that is encouraging.

It is now 10:15pm and she is waiting for a CT scan that should show whether this was a PE. It could be tomorrow before we hear results. PE is still the current thinking on what is going on.

Thanks for all the prayers!

Rusty

This transmission is intended only for use by the intended recipient(s). If you are not an intended recipient you should not read, disclose, copy, circulate or in any other way use the information contained in this transmission. The information contained in this transmission may be confidential and/or privileged. If you have received this transmission in error, please notify the sender immediately and delete this transmission including any attachments.

The Ups and Downs of Kidney Disease

This is one of the son-in-laws checking in to bring everyone up to speed by quickly summarizing the past few years of Mama Rose's adventures in Kidneyland.

February 5, 2008 - Mama Rose got the phone call she had been waiting on for many years. The next day she was cut open and some dude's kidney was hooked up to her body. It was quite a turn of events. Her first grandchild was born January 25, then 11 days later she gets a new kidney that would give her new, dialysis-free life.

February through March 2010 - Mama Rose recovered from the invasive surgery within a few months. Her body accepted the kidney fairly well and the creatinine levels got close to normal range, but it was never perfect.

March 2010 - Her creatinine levels rose and she went back on the list for another kidney transplant.

August 2010 - She went back on dialysis. It wasn't a great scenario, but the dialysis helped her body regulate a bit and gave it more energy than it had with just the partially functioning kidney.

January 20-21, 2011 - After an up and down health week, she got another exciting call on a Thursday evening: "Mrs. Rose, we think we have a kidney for you that is a great match. Don't eat or drink anything after midnight. We'll call you in the morning." Around 7:30 the next morning they called and told her to never mind, "go ahead and eat breakfast." Then at 10:30am they called and said essentially, "Never mind about never minding. Come on in. We think we'll be able to do your transplant at 4:00 this afternoon." It was a roller coaster of events. The smart people who paid a lot of money to go to school for a long time (aka doctors) began her surgery around 6pm that night; nearly three years after her first transplant.

January 22 through February 17, 2011 - The surgery went well. The doctors described her getting that specific kidney as "hitting the jackpot." She had some other complications in the days following surgery, but her body accepted the new kidney well. Her creatinine levels returned to optimal levels and she was able to go home. She ended up not feeling well and had to go back to the hospital. Some stuff that only those smart people who paid a lot of money to go to school for a long time could explain happened. Mama Rose had to have more surgery. It was quite exhausting and hard on a body. Other complications came and then the sad news came that the "jackpot" kidney had to be removed. More surgery. Her body had been through it.

Today - Mama Rose has had even more complications and is flat worn out. She is, understandably, ready to feel better. She has been very tough throughout the process. She must have the pain tolerance of a (insert something that has a high pain tolerance).

Prayers to The Great Physician are appreciated. Mama Rose's body needs to be healed. The doctors need to be directed to make good decisions as they try to care for her.

We are so grateful that our families are here in Winston-Salem together. And that Russ has his own ruts carved in I-40 between here and Raleigh.

So that's the quick recap of the last 3 years with Mama Rose's kidneys. Papa Rose will begin to provide updates via this blog as new developments come about.

Thank you for your prayers and concern.

- Blake

May 8, 2008

Hello again, Just to let all of you know that I'm feeling great! I had been feeling weak and tired just about the whole time since my transplant but also, I had NO appetite and I really was eating next to nothing. One of the doctors put me on an appetite STIMULANT about a week and a half ago which I really didn't want to go on, but it has helped my appetite and that fuel (food) makes an amazing difference in the way I feel! : ) Things seem to be finally falling into place and I'm starting to feel as normal as I ever feel. (those of you who know me best know that I never was and never will be "normal" !)

PS. The doctor promised me that if I start porking out that I can go off the appetite med. So far I've gained about 3 or 4 pounds and I'm holding steady.

I go to the doctor and get my blood drawn tomorrow so I will try to give you an update then.

Karen

April 25,2008

Alright guys. I know that I've been so bad at blogging but i"m doing it now. Last week was a bad week culminating in 2 units of blood and a kidney biopsy on last Friday. At the beginning of the week, I was feeling weak and tired and it ends up that my Hgb was down again and even my white count had dropped to below 1 which is way too low. So I had to go every day last week to get shots to boost my WBC and some for my Hgb and then my Friday bloodwork had my creatinine up to 2 which was the level where they said that they would biopsy to rule out rejection. So the blood and the biopsy all happened on Friday and then Monday all of my blood work was normal!! and I found out Tuesday that my biopsy showed no signs of rejection or inflammation. The greatest thing was that i honestly didn't worry at all through the weekend. I have truly handed it over to God and I have a peace about everything now. Thanks for your prayers. I can feel them.

So right now, I feel much better and my bloodwork and office visit with the doctor was great today. love to all......Karen

April 4, 2008

Hi Guys, Are you surprised that I'm doing better at my blogging? Well, God has been answering our prayers. Everyday, I feel more and more of that peace that I've been searching for and I thank you for praying along with me for that. It's such a wonderful feeling to have that peace regardless of any circumstances.

Yesterday was my clinic visit. All of my bloodwork was excellent. My creatinine had risen a tiny bit but God is taking care of that so no worries. They took me off a couple of pills and that's ALWAYS good to get to decrease those pills. I feel great except I still get tired easily but the doctor says that I'm anemic and that's probably causing that. All in all, everything is great and it's wonderful to get out of the house and be sort of like a normal person. For those who know me well, I will NEVER be normal. And I'm glad about that. : )

Love to you all. I'm doing so much better!

Karen

March 29, 2008

Hi Guys...Sorry it's been so long since I blogged. But here goes. I've been basically doing very well except for some minor setbacks. Last week my creatinine went up, which is not a good thing. The doctors discovered that I had a collection of fluid on top of my new kidney which had to be drained. I had a drain put in last Monday and it was removed on Thursday. Also, my bloodwork on Thursday showed that my creatinine had gone back to the previous level! The doctors said that the creatinine rise may have been from the fluid pocket pressing down on the kidney.

I need your help with a matter that I'm struggling with. I’m ashamed of this, but I’m a worrier. Last week when this trouble developed, I had myself rejecting my kidney and already back on dialysis before the day was over. I am so very thankful to God for providing me with this gift of life in His perfect timing but I find myself everyday wondering if today will be the day that I will reject. During my dialysis, I intentionally and fervently prayed for God to help me let go of everything and turn it over to Him. He answered my prayer and I felt like a weight had been lifted. I know that God is in control of everything so why am I being so foolish as to think I have anything to worry about or that it will do any good at all? So if you will please pray that I can turn all of this over to God and that He will give me the peace and comfort that only He can give.

I love all of you and thank you so very much for all the love and support that you have given me through this whole experience. I’ll try to be a better blogger.

Karen

Thursday, March 13

I know you all probably thought that I packed up and moved to Acapulco to enjoy my new kidney, but alas, no. Rusty just handed me the reins to this blog and it took me this long to figure out how to post.

So, hold on...it's gonna be a bumpy ride! I am feeling GREAT! I think that the tweaking of my medicine is going great. As time goes on, they are decreasing some meds and doing away with some altogether. And I think that I've gotten a good therapeutic balance with the meds that I'll be on forever. All my lab tests look great and even my blood pressure seems to be behaving better for the past couple of days. Every day I feel much better than before. I still have to rest. I don't think that my energy level is 100% but it's getting there. I heard on TV tonight that flu season is really slacking off...about half of what it was last week, so that makes me very happy because I have a better chance of getting out of the house without getting the flu.

So you can see that nothing earthshattering is happening but it really makes me feel good that all of you are checking the blog to check on me. You ALL are such a godsend to me and I love you all.

Karen

PS This coming WEDS I will be able to drive. WOOHOO!! : )

Friday - February 29

This has been a good week for Karen. She has been feeling much better this week than last week. She is still going to Baptist Hospital twice per week for checkups. They continue to work on getting her blood pressure down as well as tweaking her medications to get her lab results where they want them. She still doesn't have a lot of energy, but this is also improving. Creatinine level (kidney funtion) continues to be good!


The lastest we have been told is that she will have to stay out of the public for two months from the date of her transplant (Feb 6). That includes malls, church, restaurants, etc. We have also been told that it will be about that long before she really starts feeling normal again. So far she hasn't complained about "cabin fever" but I expect that to get worse as she begins to feel better!

Again, thanks to all of you for the prayers, meals, cards (everyday she gets another stack of cards in the mail), assistance with transportation, phone calls, etc. They mean so much to us!

Saturday - Feb 23 (Updated)

Saturday Afternoon (4:30pm) Update: Karen is having a really good day and feeling so much better. Headached is gone. More importantly, Heather and Baby Livy are visiting which is the best therapy there is!
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Karen has been feeling pretty bad this week with no energy. The doctors are sure this is primarily due to her anemia. She had her regular clinic visit at Baptist Hospital yesterday (Friday) morning to check her out. Based on her lab results, they kept her in the hospital until midnight last night giving her two units of blood for the anemia and also treating her for high blood pressure. Kidney function continues to be in the normal range.

This morning she says she is feeling more like herself from an energy standpoint than she has since her surgery, so we are very thankful for that. Her only complaint right now is she has a headache. The headache is probably due to the fact that her blood pressure continues to be quite high (side effect of some of the meds she is on). They have changed her medication for that, so we are hopeful that will come down shortly.

As I believe I indicated earlier, she is on a huge amount of different medicines. This is normal for post-transplant patients. Right now, and I am guessing for the next several months, they will be "tweaking" her meds to find the right combination. In addition, meds will be reduced somewhat over time.

All in all she is doing great. Just going through normal adjustments to medications!

Monday - Feb 18 - First Clinic

Karen attended her first post-surgery clinic today at Baptist Hospital. Everything is looking good and the kidney function has improved some more (creatinine level lower than Thursday!). As expected, they are making tweaks to her medicines, but Doctor seems very pleased with her progress.

I believe that Karen's expectation (and many others) was that she would immediately feel terrific, so she has been somewhat disappointed. She continues to tire very easily, still needs a lot of rest and not feeling great. Dr. Rogers (transplant surgeon) helped to manage her expectations today, telling her that it normally takes 2-3 months before she really starts feeling good again and can return to "normal" activities. I think that was actually a relief to her because now she knows better what to expect. He also indicated that she will probably need to stay away from stenuous exercise including driving a car for about 6 weeks from the date of her surgery (I didn't know driving was stenuous exercise so glad to know I have a been on a heavy exercise regimen since I was 16!). We may need to call on some of you that have volunteered to help with transporation.

My postings will probably be less frequent now that we are past the surgery, etc. but I will try to give you an update a couple of times a week.

Rusty

Saturday Night - 2/16

Karen was able to come home from the hospital on Thursday night after her second surgery. She is experiencing some soreness which is understandable given that she has had two surgeries in the past week or so. Otherwise she is feeling good and keeping her great attitude about things.

She is staying at home for now and is resting quite a bit. With her anti-rejection drugs, her immunity is very low and the doctors recommend she avoid large groups of people for the next month or so. This is especially important right now with the flu epidemic that is going around. That means that she probably won't be back at church for a while. Our church friends and neighbors have been great about providing meals for us which has really been nice.

Karen will be required to go to Baptist twice a week for "clinic" where they will continue to monitor her closely and adjust her medications as needed. I am not sure how long this will last, but the frequency will be reduced over time.

As always, thanks for your prayers and support!

Rusty

Thursday Morning

Karen is through with her surgery this morning and everything went well. The surgery started around 7:30am and lasted about 45 minutes. She is back in her regular room. She is still groggy and catching a few winks after not sleeping well last night.

For those of you not in Winston-Salem, we were surprised with about 2" of beautiful snow last night between 7pm and 10pm. Schools are closed today but I didn't have any trouble driving back to the hospital early this morning.

Rusty

Wednesday Afternoon

Karen is now checked into the hospital and surgery is scheduled for 8:30 (now 7am) Thursday morning. She will be put to sleep, but the procedure should only last about 30 minutes. She should go home sometime Thursday afternoon.

The transplant surgeon just came by and said that her lab results from today have her creatinine level even lower than before and now in the "normal range!" Other lab results look good as well.

While overall she is feeling good, she hasn't seen the dramatic improvement in how she feels that others with transplants have described. We think this is because her dialysis was working so well and she was feeling really good and now has the side effects of the medicine and recent major surgery. The doctors say this will improve as time passes.

Rusty

Wednesday Morning

Karen continues to feel good but is realizing she still gets tired easily and has to pace herself. This is certainly to be expected given the major surgery she has just been through and all the meds they have her on. As you may know, transplant patients must take numerous anti-rejection drugs and other meds. Some of this will taper off with time, but some she will take for the rest of her life. Right now she rattles when she walks from the number of pills she has to take!

Karen goes back into the hospital this afternoon, will spend tonight in the hospital, and then will have minor surgery tomorrow (Thursday) to remove her dialysis catheter. Hurray, we are done with dialysis! We don't know what time the surgery will be tomorrow, but expect her to be able to go home sometime Thursday. We should get more lab results back to let us know if the kidney function has continued to improve, but all signs point to yes.

The most important thing that we have realized through all of this is that God always has a plan for us. Sometimes we get impatient and want things on our schedule, but we have to turn it over to Him and wait on His perfect timing.

We also realize how blessed we are in so many ways...especially with wonderful friends, co-workers, and family. Your outpouring of love and support has been amazing. Your prayers, thoughts, cards, emails, food, flowers, phone calls, volunteering to drive Karen around, etc. are so much appreciated!

Rusty

Monday - 7pm - Karen is Home!

Karen is home! We finally got home from the hospital a little after 6pm. Karen is tired, but still feeling good and looking forward to a good night's sleep in her own bed. Lab results this morning show further improvement in her kidney function even from yesterday, with her creatinine level almost at normal levels, indicating the "new kidney" is doing great!

We are all delighted to have here home!

Rusty

Sunday - 1:30 PM

Everything is still going great. Karen is now "unhooked" from just about everything except one IV in her neck. She is now more mobile and is getting up walking around and feeling good. From looking at her, you would never guess she just had major surgery. Creatinine level continues to drop, indicating good kidney function. They have her on a "mechanical soft" diet which means any kind of meat she gets looks like dog food because it is chopped up! She's not too happy with that.

We are still on track for her to be discharged on Monday. She will have to come back and spend Wednesday night in the hospital in preparation for a minor procedure on Thursday related to her previous dialysis treatments.

Thanks to all for your prayers, flowers, cards, emails and well wishes!

Saturday Morning - 10am

Good morning! Karen continues to feel and look good and has even been up walking around some. Her creatinine level (indication of her kidney function) continues to improve daily and is now down to the level it was before she had to go on dialysis! This is really encouraging since she hasn't done dialysis since Tuesday night (prior to surgery). This indicates that the new kidney is really doing its job.

Karen is now ready for some visitors. If you plan to come see her, we ask that you please follow the instructions below (in the earlier post) that we have been asked to follow. We are not trying to discourage your visits, but just want to make sure that we don't put her at risk.

Again, we are in Room B1118 in the Ardmore Tower at Baptist Hospital (11th floor).

Rusty

Friday - 8PM

We have been given some specific instructions for visitors and ask that you please abide by these:

• Because of the anti-rejection drugs that Karen has to take, her immunity is especially low.
• We would love to see you, but ask that you please not visit if you have a cold, sniffle, or flu symptom.
• Upon entering the room you will need to go straight to the sink and wash your hands for at least 20 seconds with soap and warm water.

Thank you!

Rusty

Friday - 5PM

Karen continues to do well. Transplant doctors came in to see her a little while ago. Everything is looking good and Karen will be going home on Monday.

Friday Afternoon Update

Karen is now in a room on the transplant unit. She is in room B1118 (Ardmore Tower West). She can't have visitors today (Friday) but visitors should be fine tomorrow (Saturday).

I went to lunch and when I came back they had her sitting up. She looks great and is feeling really good.

Friday Morning, February 8

Karen is still in ICU this morning. They were ready to send her to a regular room on the kidney transplant floor last night, but no beds were available. They just told us that they finally have a room, but it will probably be afternoon before they get her moved.

Karen is really looking good and lab results on her kidney function continue to improve, indicating that the new kidney is working! Karen is ready to begin getting up, etc. but is not allowed to do this while she is in ICU. She is looking forward to getting in a room where we can move forward.

I would discourage visitors for today (Friday), but think she will be ready to see some of your smiling faces tomorrow (Saturday)! I will plan on updating this blog a couple of times each day, so please check back here for updates.

Thursday Evening 10pm

I just got back from visiting Karen. She is still in ICU, but they are going to move her to a regular room as soon as one becomes available. They have been able to reduce her fluid retention and her breathing has improved dramatically throughout the day. She is looking more and more like herself every time I go see her.

Lab results indicate that the new kidney is already working and the Doctor has indicated that she will probably not be doing any more dialysis! We had been told that it could take as long as a couple of weeks for the kidney to start working, so this is a pleasant surprise.

I will begin using this "blog" to keep you updated. That will allow you to check in whenever it is convenient for you.

Thanks again for all of your thoughts, prayers and support!

Rusty