Home Sweet Home!

We left Baltimore about 11am Thursday and pulled into home about 8:15 last night. We ran into a lot of traffic and also at the suggestion of the doctors we stopped about every hour or two for Karen to walk around some. So it was a long trip, but once again God was looking out for us. Karen felt good the whole trip and I did not get too tired (Karen cannot drive yet).

When we got home we were greeted by decorations, balloons, a warm house and a stocked refrigerator! Thanks to our kids, grandkids and church friends for this!

It was awesome sleeping in our own bed last night. We slept until almost 10am...something we haven't done in years.

As far as return trips to Baltimore, Karen has to go back in a month for a quick follow up appointment. Typically with transplant patients they have to go back at 3, 6, and 12 months for a kidney biopsy (just to check for signs of rejection and overall health of the kidney) and follow up checkup. Because of the location of the new kidney behind the first transplanted kidney they will not be able to do a biopsy so will have to use lab work for this. So we aren't sure yet what the requirement will be for other return visits to Baltimore.

Thanks again to all of you for your prayers and support! We have felt very loved throughout this entire journey.

Homeward Bound

All labs came back fine. We are on our way home!

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Tentative Plan To Return to NC

We had our clinic appointment today and other than some adjustments to meds, everything looks good.

We have to return Thursday morning for additional lab work and should have results back by noon. Pending no unforeseen issues with lab values, we plan to leave early Thursday afternoon (yes tomorrow!) for our drive back home to NC!! We are so excited about this possibility but will also miss all of the wonderful people we have met in Baltimore.

Once back in NC, there will continue to be labs to be drawn twice per week and numerous follow-up appointments. Karen cannot drive for six weeks from the last surgery which was March 13 so we will need to call on some of you to help with transportation since I will be returning to work. Johns Hopkins will also continue to follow Karen through our kidney doctor in Winston-Salem.

Please pray that lab work tomorrow will be good so we can be home for Easter!

Monday Update

We had a quiet weekend at the hotel in the suburbs. We woke up to about 4 inches of snow this morning in Hunt Valley! We packed up the car in the snow and headed to Johns Hopkins for bloodwork this morning. We then moved back into the rowhouse with the help of our pastor friend Brad. He and his new church group have been so good to us and been our church family here in Baltimore. What a blessing they have been to us!

Karen is getting stronger every day but still having to pace herself. The side pain comes and goes but also seems to be getting better over time. Lab work from this morning all looks good and the new kidney is working great!

Some of you have asked what a rowhouse is. I guess it is a lot like a townhouse and they are very common in Baltimore. They are narrow but deep and have multiple levels. Attached is a photo of where we are staying. This one is over 150 years old and beautifully refurbished. It has been a great home away from home! For you sports fans it is almost in the shadow of Camden Yards (Orioles Park) and also very near Raven's Stadium.

Discharged!

Karen was discharged from the hospital today. Hooray! We are settled into the Residence Inn Hunt Valley (north of Baltimore) for our weekend stay before moving back to the townhouse on Monday. Per my earlier post, the place we were staying was already rented for this weekend when we booked our stay and would have been going home this week if not for the required second surgery.

Karen is feeling pretty good but still weak and still having pain in her side. The doctors feel confident that is just residual pain from the second surgery and should begin to ease up.

We are looking forward to a nice quiet weekend together with lots of rest.

Rusty

Thursday Update

Sorry this update is so late but today is when I had to move out of the rowhouse to a Marriott Residence Inn until Monday then back again on Monday for the rest of our stay.

Karen got to eat the first regular food today at lunch. We thought this was to start Tuesday night but there was some miscommunication about that. She was really excited today when the nutrition lady came to take her order for the day!

The plan is still to be discharged tomorrow with follow up visits scheduled for the next two weeks. Our plan is to be back in NC on April 5. We can't wait to get home. We miss all of you!

Tuesday Update

Karen is transitioning to “real” food tonight and oral vs. IV meds…another step forward!  Recovery this time (after second surgery) is much slower than the first time, but that is to be expected.  Kidney function is still great and hemoglobin is still strong so no apparent bleeding issues going on (so thankful for that!).  We are still expecting possible discharge from the hospital sometime later this week.

Monday Update

Things continue to progress for Karen.  She gets to start eating jello and other clear liquids today so that is a major step forward.  Each day seems to bring some good progress.  The kidney function continues to be GREAT!  If things progress as planned, she should be able to get out of the hospital late this week then remain in Baltimore for a couple of weeks for follow-up appointments.  She walked about 1.2 miles yesterday (around the floor of the hospital) so she is doing her part toward her recovery.  The doctors seem very pleased with her progress since the setback last week.

Sunday Update

Karen continues to do well. Today they removed her NG tube which is really nice for her. So we are down to her only "connection/thether" being two IV's. This makes getting around much easier. She continues to be a real trooper and walking her laps!

The recovery from the Wednesday surgery is a bit slower than with the transplant surgery with more pain and discomfort but the doctors are not surprised since this was the second major surgery in about a month. But she continues to make good progress. She is still not allowed to eat anything but that will come with time.

Happy St. Patrick's Day to all!
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Saturday Update

Karen had a much more restful night last night. She saw one of the surgeons this morning and everything is still looking good. Her kidney function still looks great and her hemoglobin actually went up which is a good indication that the internal bleeding has stopped.

Karen is really driven to get up and exercise. Yesterday she walked a total of a mile plus went up and down stairs and her goal for today is to walk 1.2 miles.

The best guess from the doctors is that she will need to stay in the hospital for another week and then remain in Baltimore for two weeks after that for follow-ups. That would put our return to Winston-Salem around April 5 which is about two weeks longer than we originally planned. The additional surgery set us back a bit.

The rowhouse we are staying in is rented out next weekend but then is available until April 5 so I will move to a hotel for about 4 days then back to the rowhouse for what we hope will be the rest of our stay here. It has been great having Ashley here this week. She flies back to Winston-Salem tonight.

God is so good and continues to bless us! Again thanks for all the cards, blog comments, phone calls, text messages, emails but especially your prayers. They really brighten our days!

Friday Update

We received the kidney biopsy results (taken during Wednesday's surgery) and the kidney is doing great! No signs of rejection and everything looks really good. Karen has had a lot of pain last night and this morning and didn't sleep well but she has always said that the second day after surgery is always the worst.

She has continued to get up and walk around the floor and this will help with recovery. Hopefully today she will be removed from some of the monitoring which will make walking much less complicated.

Making Good Progress

It has been a good day! Karen has felt better and better as the day has progressed. She walked 2 laps (0.2 miles) this morning and 3 laps (0.3 miles) this afternoon. But she still has lots of "tethers" attached to her.

Her creatinine is 0.6 which is unbelievably low (great kidney function) and even lower than last week. And her hemaglobin is holding steady which is a good indicator that bleeding has slowed or stopped.

A good day!

Thursday Morning

Karen slept well last night and they have had her sitting up in the chair. The nausea is gone but she is sore and tired and not feeling too good right now, but that is to be expected after the major surgery last night.

Our pastor friend Brad (connection through Summit Church in Durham and starting a new church in Baltimore) stayed with me yesterday through the surgery and it was great to have somebody with me. His new church has also provided us with a number of meals and has been our church family away from home.

Our daughter Ashley flew in last night to be with us for a few days. It is so good to have her here and now all three of our kids have made a trip to Baltimore to be with us.

Several people have asked about the purpose of the kidney biopsy that they did during surgery. With transplant patients they routinely do biopsies of the transplanted kidney. They use this to check on how the kidney is doing and to check to see if the body is trying to reject the kidney. This is usually done via a needle biopsy but because of the location of this kidney behind the first transplanted kidney they can't do that with Karen. So they did a biopsy during surgery. We don't have the results yet but her creatinine level (kidney function) is outstanding so the new kidney is working great.

So for now she will be going back through the healing process from surgery. We thank God for the successful surgery and the great new kidney!

Surgery Successful!

The surgery was successful and only took about 2 hours. While operating they discovered that part of her bowels which had to be moved around for the transplant had become twisted, very irritated and possibly blocked. This would have happened over the last week and would explain the nausea and pain Karen has been experiencing. This was fixed as well as the bleeding. Dr. Montgomery indicated that had they done a drain, they would still have had to operate to fix the bowel issue which could have also caused other issues so the surgery today was the right choice.

While operating they were able to take a good look at the new kidney and do a biopsy of the kidney that would not have been possible otherwise because of the location behind her first transplanted kidney. The new kidney looks good and we will get biopsy results tomorrow.

Praise God and thank you all for your prayers!

Surgery Has Begun

They took Karen back to surgery about 3:45 and started surgery about 4:15. The surgeon said the surgery could last anywhere from 2 hours to 6 hours depending on how much difficulty they encounter.

Thank you all so much for all the prayers. We can truly feel them. God has given both of us an amazing sense of peace about all this!

Surgery This Afternoon

The doctors have made the decision to go ahead with surgery late afternoon. The CT showed the previous hematoma has not increased in size but there are other spots that are bleeding. Continuing to give blood products carries risks to the new kidney so they feel that they need to operate and address the bleeding.

Given the past history with surgery, this is a bit scary but we trust this team and their decision. Please pray for a good outcome and for peace for us about this.

Wednesday AM Update

Karen is feeling pretty good this morning. The hematoma causes a lot of pain but it is controlled well with pain medication. Her hemaglobin continues to drop so that indicates there is still some internal bleeding going on. They continue to give her blood and blood products as well as other meds to boost her clotting and hopefully stop the bleeding.

Her kidney continues to be work well so that is a blessing. They did another CT scan of her abdomen this morning to take a look at the hematoma to see if it is increasing or decreasing but we haven't heard the results. The doctors are meeting today to discuss her case and the plan of action. They are still leaning toward no surgery.

This morning as I was getting ready to head back to the hospital I was feeling a bit lonely and discouraged and overheard a story on the Today show. It was about a woman with ALS (Lou Gehrig's Disease) and how she has only a few years to live and her quality of life will be greatly affected during her remaining time. I believe this was a tap on my shoulder by God to remind me how truly blessed we are. Karen and I have spent some time this morning talking about all those blessings: a great new kidney, loving family and friends, people literally all over the world praying for us and the prospect of greatly improved future health for Karen! We give God the glory for all of this and encourage all who read this to realize how blessed you are as well!

10pm Update

Karen has received the blood products to reduce bleeding but I believe they will wait to do the CT scan tomorrow.

Karen is feeling pretty good and has a good nurse so I have gone "home" to try to get some rest.

I will post an update tomorrow whenever there is new information to share.

5pm Update

We just saw Dr. Montgomery. He really wants to avoid surgery at this point if possible due to the risks at this point in her recovery. He is going to order another CT scan to see if bleeding appears to have stopped and also ordering blood products that should help stop any bleeding. If the CT shows that bleeding has stopped then they will insert a drain to reduce the hematoma vs more risky surgery to remove it. This will take longer but lower risk.

He is also going to discontinue all blood thinners going forward as this appears to cause spontaneous bleeding. He feels that the new kidney is well established so isn't too concerned about clotting or issues with that.

I will post again when we have more info.

3pm Update

The transplant team (without Dr. Montgomery who is the head of transplant and the surgeon who did the transplant) came by and told us he (Dr. M) is coming by soon but has indicated he may choose NOT to operate given Karen's surgical history, but instead may place a drain to try to remove the hematoma. He will decide after he sees Karen.

Fortunately Karen is resting pretty comfortably with the help of pain and nausea meds. And her vital signs and blood level has responded well to the transfusions. This is good if they do decide to do surgery.

I will post again after a decision is made about surgery.

11AM Update

The doctors are giving Karen several units of blood this morning to build her up for surgery early in the afternoon. They have also done an ultrasound of the new kidney and there is good blood flow to the kidney so that is good. Prior to this morning they have been trying to make Karen's blood thinner to prevent clotting but this wasn't happening as fast as they would have wanted. Now that she has to have surgery this is another of God's blessings as there should be less bleeding issues from the surgery.

They have also inserted a naso-gastric tube and drained her stomach. This has helped to reduce the pressure in her abdomen and the nausea has eased up. The pain meds have also reduced the pain so she is resting comfortably right now and very calm.

With Karen's history of bleeding and clotting, surgery is always risky so please pray for a good outcome this afternoon. We know that God is still on his throne and watching over us!

Setback - Prayers Needed

We have had a pretty significant setback this morning. Karen has been readmitted to the hospital. She has severe pain in her back, nausea and passed out and fell when she got up in the middle of the night but woke right back up. They have determined that she has a giant cantaloupe sized hematoma (pocket of blood) in her abdomen and are doing surgery this afternoon to remove it and check out the new kidney. So far the new kidney looks ok and this hematoma is not near the new kidney. They believe the bleed started first and she passed out from that (rather than the fall causing the bleed).

That is all I know and will post updates after surgery. Please say an extra prayer for Karen.

What a Difference A Day Makes

Today is an amazing day in Baltimore with sunny skies and temps in the 60's and everyone is out and about. For the first time we have been able to sit out on the deck of the rowhouse and enjoy the sunshine. You can see Camden Yards (Orioles Stadium) behind Karen.

Making the day even more special, Russell Palmer made the drive down from NJ and spent part of the day with us. Russell was in the College Park Baptist Church youth group years ago when we were youth workers.

Karen woke up this morning feeling great. God is so good!

Friday March 8 - Another Bump In the Road

Thursday was a quiet day with no major issues. This morning we hit another small bump in the road and spent all day (7am-7pm) in the emergency department (ED) at Johns Hopkins. Karen woke up early this morning with nausea, elevated blood pressure and mild pain/pressure in her chest so we called the transplant team. They suggested we go to the ED. Of course the ED doctors assumed it was a heart attack but ultimately cooler heads prevailed (the transplant team) and heart issues were ruled out. They have concluded that it probably resulted from one of the anti rejection drugs that is known to cause nausea. This all resolved itself and Karen is feeling fine now and they have adjusted meds to try to avoid a reoccurrence.

The new kidney is doing great and we thank God every day for this!

Wednesday 3/6/13

Today was a day full of clinical visits and it was a long and stressful day. We left home about 7:00 and didn't get back until around 4:00.

We are now past the initial euphoria and learning to deal with the realities of all the side effects of the medicines and all the tweaking that goes along with that.

As is fairly normal with transplants, Karen is now having to monitor blood sugar and give herself insulin shots. This may go away over time as other meds are tapered back. They are also not happy with the levels of blood thinner so have begun new medicines to try to address that to avoid clotting. And of course, when we leave Baltimore, all of this monitoring will have to be transitioned to providers in Winston-Salem (another point of stress!)

But the good news is that the new kidney seems to be functioning great. We are a bit exhausted and stressed tonight but tomorrow is a new day and we are still so thankful for what we know will be a better new life!

Discharge!

Karen finally got discharged around 5pm this afternoon (OK... EVERYTHING at Johns Hopkins doesn't work like clockwork!). Russ flew in this afternoon as well so it is great having them with me tonight at the house.

The picture above shows us walking across the bridge from the hospital to the parking deck on our way out.

We give God all the praise for this and so thankful for our donor and all the wonderful staff at Johns Hopkins.

As I mentioned before, my posts will be more spaced out now but will give updates for important events.

Slight Delay - Discharge Saturday

Our discharge has been delayed until Saturday morning. One of the labs they drew on her anti-rejection meds was drawn at the wrong time so they have to redraw it and wont have results until tomorrow. There is no problem but just have to have this before discharge.

We have waited a long time for this kidney so another day is not a big deal!

Getting Discharged

Karen will be discharged from the hospital this afternoon! All of her lab values are excellent and she feels great. We will have to remain in Baltimore until mid March with frequent visits back to Johns Hopkins for lab tests and clinical visits while they dial in and regulate her anti-rejection and blood thinning meds and continue to closely monitor her kidney function. But we are looking forward to a bit more freedom.

We are extremely impressed with Johns Hopkins. The entire staff has been great, things seem to happen in a timely fashion and they are so "on top" of everything. It has been an amazing experience and a model for what health care can and should be!

We have been "adopted" by two local churches. One is Hunt Valley Church that we attended our first week here through a connection back in Winston-Salem. The other is Redeemer City Church which is a new church plant from Summit Church in Durham (the church Russ attends while at NC State). These churches have been great at caring for us and providing meals etc.

Russ flies in tomorrow to spend a week with us and we look forward to that. Ashley had to cancel her visit due to her family being sick and she did not want to expose Karen to this (with her compromised immunity).

I will probably discontinue daily posts to this blog but will update every couple of days or when there is a significant change. Thanks again for all the comments on the blog, emails and cards. We love reading them.

Rusty