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

Thursday Update

We continue to make steps forward. This morning her surgical site drain was removed so the only remaining "leash" is one IV. We have not seen the doctors today but assume we are still on schedule for a Friday discharge.

I am pleased to report that our donor's father did not have a stroke. He has pneumonia and dehydration and is feeling much better.

Prayer Request-Donor's Father

Our donor is on her way back to NC and received a call that her elderly father has had a stroke and is on his way by ambulance to the hospital.

Another Step Forward

We took another major step forward today. They removed Karen's perm cath from her chest. This was what they used for dialysis so a good sign that dialysis is a thing of the past! They are also talking about a Friday or Saturday discharge which would be great since Ashley and Russ (our other daughter and our son) are flying in this weekend to Baltimore to spend some time with us.

Our donor is feeling much better and was officially released today by the Johns Hopkins doctors. She and her family member left today driving back to Winston-Salem. But what a gift she left behind through her donation! We can never thank her enough for her sacrifice!

Please do me a favor and include your last name when posting to the blog as we have several sets of same first names! We want to know who is posting.

Rusty

Discussion about Discharge

Everything continues to go well here in Baltimore. Kidney function is excellent and Karen feels great. The doctors are beginning to discuss possible discharge from the hospital as early as this coming weekend with frequent followup appointments over the following weeks at Johns Hopkins. We are still expecting to be able to go home sometime in mid March.

Update - Improvements

They stopped Karen's blood thinner temporarily and the blood in her urine has completely cleared up. Praise God! They have restarted it but will take it up slowly and will have to moderate it closely. The rash is still there but much better.

Another great ending to the day! God is so good!

Real Food/Photo

Today Karen was finally put on a regular diet. She has had only liquids since last Monday and really enjoyed her first real meal at lunch today. She also went to physical therapy. She walked 1000 feet, climbed 18 steps and other tests and passed with flying colors and dismissed from any further PT.

Creatinine (measure of kidney function) is really good. It is lower than it has been with any of the previous transplants.

She is dealing with a bad rash which may be an allergic reaction to her antibiotic and having more blood in her urine so they are going to back off on her blood thinner and do a CT scan to just make sure everything is ok. But these are hopefully just bumps in the road. Please say a prayer for us about these.

Here is a post-transplant picture. I think she looks great!

Sunday Update

Things are still going well. No big changes since yesterday. Karen and the new kidney continue to do well. Karen did a lot of walking Saturday here around this floor of the hospital.

Doctors continue the balancing act with meds. We are so excited about the new life we see coming!

Good Day Today!

Karen continues to feel really good and kidney seems to be working well. She is not using any pain meds at this point. They removed her from heart monitors so we are down to just IV's. This makes walking much easier just having to push one IV pole.

The transplant surgeon came by this morning and moved her to clear liquids. She has been NPO (nothing by mouth) since Monday night. She said that this is the best jello she has ever eaten!

Much of her treatment and meds are now a balancing act (blood pressure high enough for good blood supply to new kidney but not too high, blood thin enough to prevent clots but don't want to increase bleeding, etc.). Still having some bleeding from the drain from her surgical site but slowing down.

Forgot to tell you but she is on the same floor that the guy was on that got the double arm transplant! This place gives incredible patient care and we know we are in the right place! Thanks so much for the blog comments, cards and especially the continued prayers.

Friday am

Karen's kidney is still doing great and she is slowly getting rid of lines, etc. Bleeding has slowed quite a bit so that is good news. Once bleeding stops they will start her on blood thinners to prevent clotting which was the problem with the last transplant. The doctors have to walk a fine line between the bleeding and the clotting because of past issues with both.

Our donor is doing much better and has been discharged from the hospital! She will stay with us in the rowhouse until her follow-up appointment next week.

Heather and our donors husband flew home yesterday and our donor's daughter flew in yesterday to help her mom. More family on both sides will be coming and going during our stay.

We are praising God for all the successes!

Thursday Update

Karen is still feeling really good and the new kidney is working great. She is having some bleeding from her surgical site and the hematologists are keeping a close eye on that. They don't want to be too aggressive treating the bleeding for fear of causing clotting and will instead give her blood as needed (2 units today). Karen is calm and confident about all of this and I am working on achieving the same level of peace!

Our donor is feeling much better today and has been up and walking around.

Sorry I am a bit late with this update but have been waiting for more info on the bleeding issue. I will give an update tomorrow.

Wednesday Update

Karen is really doing well! She has been sitting up in the chair all morning and just took a walk and made a complete lap around this floor in the hospital and did great. I am so proud of how she is pushing herself! The people here at Johns Hopkins have been so very nice and so extremely competent all the way from top to bottom. It has been a great experience and I highly recommended it.

Our donor is not feeling good at all so please keep her in your prayers.

Karen is Looking Great

We just got to see Karen and she really looks great! She is still very sleepy as you would expect but has answered questions and talked with us.

I also forgot to say in my last post that the surgeon said the kidney looks great and is already working. Sometimes it takes several days to get started but this one has not.

She will be in the recovery room for about 2 hours then moved to a room where they can monitor her closely. I may not post again tonight unless something changes.

Again, thanks for all the prayers!

Surgery is Over!

Dr. Montgomery just came to tell us that he is finished and the other doctors are wrapping things up. Everything went well and it took much less time than expected! He did have some problems finding a good spot to connect the artery but was successful. She only required two units of blood which is a dramatic improvement over last time so no major bleeding issues.

The plan is to send her to a closely monitored bed versus ICU so that is encouraging that he feels ICU is not necessary. With her history of clotting, he did say that the next 48 hours will be critical and they will monitor her very closely. He said if any issues develop they can operate again to address the issue but hopefully that won't be required.

Praise God for this outcome! I will try to post again after we see her.

Rusty

Update 3:15pm

It is 3:15 and Karen has just been taken back to surgery. We met with Dr. Montgomery who is the transplant surgeon. He was very reassuring but did tell us to expect surgery to take around 6 hours. It will take longer than usual because he has to work around previous surgical sites etc.

So it will most likely be late tonight before she is out of surgery. I expect that she will end up in ICU afterward.

The neatest thing happened as she was being moved from her room to the surgery area. We "just happened" to pass our donor on her way to her room and they got to talk. Then we found out they had "accidentally" taken her to the wrong floor. We prefer to think that this was a "God thing" and not a coincidence!

We are still confident that we are exactly where we need to be and this will have a great outcome.

Thanks for all the prayers! We can feel them.

Our Donor Surgery

Our donor's surgery is over and she did great! They have begun the procedure to transplant her kidney into the recipient.

They are saying that our kidney from St Louis should be here around 2:00 and surgery for Karen could start earlier than 2:30. She is still calm and confident and knows that God is in control!

Today is the Day!

It is hard to believe it, but the day has finally arrived!

Just a quick note of clarification.  As I believe I have indicated to most of you, this is a 3-way paired donation involving 3 donors and 3 recipients.  Our donor (who is not a good match for Karen) will give her kidney to another recipient in Baltimore, their donor will give a kidney to another recipient in St. Louis and that person’s donor (in St. Louis) will give her kidney to Karen.  So two kidneys will be making the flight between St. Louis and Baltimore!  But in all of my posts, when I refer to “our donor” I am speaking of our friend from Winston-Salem who has volunteered to give a kidney on Karen’s behalf (even though Karen won’t actually be receiving her kidney).  She is our true hero and who we consider “our donor.” 

So our donor surgery will occur about 7:00am this morning and Karen’s surgery will occur around 2:30 this afternoon (both in Baltimore).  Please continue to pray for all six people involved in this!

Karen at Johns Hopkins

One More Day!

Only one day left and we are really excited! Karen is feeling great and not at all nervous. Our donor and her husband arrived yesterday (Sunday) and our daughter Heather flew in this morning and will be here until Thursday.

Karen was admitted to the hospital this morning and our donor has to be here at 5:15 tomorrow (Tuesday) morning. The donor surgery will begin around 7am and Karen's surgery will be around 3pm Tuesday (2/19).

Thanks to all for your emails and prayers.

Safe Arrival

We arrived safely in Baltimore around 3:45 pm. The trip was uneventful and the townhouse we are staying in is really nice and will be a great home base for us. Thanks again to all for well wishes and prayers.

Rusty