Back to Routine and Some Pampering

Ann and I hit the ground running this morning, going over to the hospital at 8:00am for my blood work, X-ray, and pulmonary rehab. Once back at the hotel, a home health nurse came and changed the dressing on my PICC line site. I finished one of my IV medications yesterday and will finish the other one Wednesday, so I am hoping to get rid of the PICC line soon. My sleep patterns might get a little better once I don't have to adhere to an IV schedule.

This afternoon I got a little pampering time. Kristi's niece had recommended a hair salon nearby so I got my hair highlighted and trimmed. It felt really good to have that done. Of course, the stylist was no Julie Filiatreau (miss you Julie!), but she did a good job and now I won't have to worry about my hair for awhile. I told Ann that even though a lot of my body looks pretty beat up right now, at least my hair can look good!  After my appointment, we went next door to a homemade ice cream shop and treated ourselves.  I am all about the treats these days!

I got my hair did!

After all of that activity I was wiped out! It is amazing to me how tired I get after certain activities and by the end of the day. This recovery process really is a slow one.  No one promised it would be easy.  But I do know it will be worth it!

I went to Target!  (Cashier is not impressed)

Quiet Weekend and a New Visitor!

Well, the long weekend is drawing to a close. I have been pretty lazy and not having rehab the past 3 days has not helped that any. I have tried to make sure that I did get a little exercise each day though.

Yesterday Kristi and I went to Target. This may not seem like a big deal, but it was huge for me as I have not been to any big stores shopping in over a year! It was just too hard for me when I was needing oxygen to get around. We were in there for quite awhile buying some groceries for me, so by the time we left I was pretty tuckered. But I did it!

Later yesterday Kristi left to join Paul back at home and my best friend Ann arrived! I was so excited to see her! She had been here during my transplant surgery but I never actually got to see her then since she had to go back home before I awoke following my surgery. Since she has been here we have just been relaxing and reliving the events of the past several weeks. Tomorrow I will break her in to my rehab/hospital schedule and hopefully we can have a little fun too! I am so glad she will be here until Saturday!

Rehab, Routine, and Some Treats

Happy Memorial Day weekend everyone. I can't believe it is the end of May already; I have totally lost track of time since my transplant and time spent in the hospital. Yesterday marked the end of my second week of rehab since being released. It has actually gone by faster than I expected. I am still walking 30 minutes on the treadmill each day, and am up to 1.2 mph as of yesterday. I'm burning it up! I also do a couple of leg exercises with ankle weights while at rehab. Once I am more healed I will start some upper body work. Besides rehab, each week I have blood work and a chest X-ray on Monday and Thursday. These keep my doctors on top of my medication levels and let's them see how my new lungs are doing. So far, things are moving along as hoped. :-)

My dad and aunt Doris Jean left on Thursday morning. Their time here seemed to pass very quickly. I enjoyed their company, appreciated their help, and loved the home cooked meals!

Me, Daddy, and Doris Jean

I am getting pretty sad each time someone leaves to go back home.  I guess a lot of that is that I want to go with them!

Since their departure, Paul and Kristi have been staying with me here at the hotel.  Paul took me to the hospital for my appointments Thursday and Friday.  He and Kristi have been cooking for us too which is very nice.  On Thursday night, I got a special treat as they invited me to go with them to see "Jersey Boys" at the Fox Theater.  It was so nice to get out and do something "normal" and the show was very entertaining.  I am still hearing the songs in my head!  I was pooped when we got back to the room that afterwards, but it was worth it!

I got another treat last night when we went to Ted Drewes frozen custard place last night after dinner.  I had no idea how popular this place was until we pulled up and the parking lot was packed with people and vehicles, on a cool, damp night!  Several people had their dogs with them, including at least 8 Shetland Sheepdogs, who were getting custard too!  I got a Fox Treat which was a thick milkshake (called a concrete) with hot fudge, raspberries. and macadamia nuts.  I ate it all and it was yummy!

Take care everyone; I will update again soon!

First Clinic Appt. Post Tx

Today was a milestone for me post transplant as I had my first pulmonary function test (PFT) and clinic appointment with my pulmonologist. I did my PFT's first and was somewhat disappointed that they weren't higher. But once I saw the pulmonologist, he reassured me that I was doing fine at this point in my recovery. He reminded me that with the pain and tightness I have from my multiple incisions, it was a totally expected result. He said my X-ray looked good and that all of my blood work also looked fine. So I left my clinic appointment feeling much better than when I went in. I have another PFT test next week and go back to clinic in 2 weeks.

Daddy and Doris Jean have been accompanying me to the hospital each day. We have been taking the hotel shuttle back and forth, partly to spare me the stress of Daddy driving my vehicle in a strange city. :-) The shuttle is a little rough on my sore body, but that will get better. I have enjoyed some good home cooking, particularly the roast, potatoes, carrots, and corn bread we had Sunday night. Thank goodness my sense of taste is getting better! Daddy and Doris went to the Budweiser plant today while I napped. Doris bought me a cute pink t-shirt with Clydesdales on it. :-)

The only thing scheduled tomorrow is my pulmonary rehab at 9:00 in the morning, which is kind of nice. We had discussed going to Union Station for a short time if I felt up to it so we shall see. A change of scenery would probably help me.

Take care everyone and thank you for keeping up with me here! Love you!

Preakness Day

Although my Derby watching experience 2 weeks ago was unique, I have to say that watching the Preakness in HD in a hotel room is probably a bit more satisfying. HA! So thankful to be out of the hospital! (but darn,no Triple Crown winner again this year!)

The events of the past couple of days have been bittersweet. We had another "changing of the guard" on Friday when Renee left to go back home and my dad and aunt Doris Jean arrived. I was very sad for Renee to leave. She had been such a comfort to me since getting released from the hospital and getting settled into the hotel setting. She was so good at anticipating my needs and making sure I had everything I needed. But I know she was missing her family very much and needed to get back home. And to their credit, Daddy and Doris Jean are also taking good care of me. She has been cooking for us and they both have been helping me with my needs. We took a walk outside earlier, which I needed. I have been pretty sore and stiff today and that has affected my mood, but I am trying to stay positive. Everyone keeps telling me that I am doing great considering all I have been through, but I guess I am impatient. Please keep the positive vibes and messages coming!

Brief Update and a Few Pics

Hi everyone, another day of recuperation is drawing to an end.  Renee and I went over to rehab this morning at 9:00.  They switched my time from 8:00 and I think that is going to work better.  Traffic was better and the rehab office wasn't as busy at that time.  My blood pressure was low this morning and I was a bit light headed while walking but I did complete my 30 minutes on the treadmill.  They told me to try and up my fluid intake today in hopes of improving my blood pressure.  So that is my goal today - drink more!  We also went and sat outside for awhile this afternoon which helped my spirits.  I got to pet a little Shih-tzu while out there and it made me miss Sherman.  I can't wait until he will be able to come stay with me!  At dinner time, we went downstairs and had a BBQ sandwich, baked beans, and chips as part of the hotel's social hour.  It was good, but my sense of taste is still so crappy,  nothing tastes quite right and I can't eat much at once.  Hopefully that will improve soon.  I want to enjoy food again!

Here are a few pics from recent days:

Wanda the patient care tech wheels me out of Queeny Tower!

Wanda was so funny and always called me "Lisa Jean"

Nightstand angels watch over me

Beautiful flowers from my family welcomed me to my room

First Full Day of Freedom!

The day started with an 8:00 appointment with the treadmill at rehab. I walked for 30 minutes. It was pretty painful, but I did it. I am still sore from the most recent surgery. Ironically, I don't have pain from the transplant site, just tightness.
After returning to my home away from home, I received a visit from the home health nurse. I will be on IV antibiotics for about two weeks to clear up an infection.
The remainder of the day was spent trying to get comfortable and rest, which I did at times. I sent Renee on some errands to pick up medical supplies and groceries. She is planning to make me some comfort food tomorrow. My sense of taste has been out of whack due to some of my meds, but this should improve over time.
Another huge thanks to everyone for your kind words and best wishes. They have really helped get me through my difficult times. Keep them coming! I may be contacting some of my transplant friends soon for some moral support. I am experiencing so many different things right now; I know you all can offer your unique insight.
My address for the remainder of my stay in St. Louis will be Residence Inn Marriott C/O Lisa Cissell, 525 South Jefferson Avenue, St. Louis, Missouri 63103. This is a very comfortable extended-stay hotel that is just minutes from the hospital.

FREE AT LAST!!!!!

The big day has finally arrived. Lisa was discharged from the hospital today! The original plan had been for tomorrow, but after a little begging on Lisa's part, she was allowed to go. Everyone truly felt awful that she has had to stay this long. We laughed about her not wearing shoes for a month. (insert Kentucky joke here!)
She ironically was discharged on her one month anniversary of being transplanted. She talked about how happy she was to be leaving but also remembered that somewhere in the U.S. a family is mourning the one month anniversary of the loss of a loved one. She asks that everyone continue to pray for her donor family. We all hope to meet them some day and try to express our thanks.
Even though Lisa has been discharged, she will continue her pulmonary rehabilitation first thing in the morning. No rest for the weary! Please continue to pray that Lisa's recovery stays on track. She has definitely had enough bumps in the road.

Posted by Renee

The Tube is OUT!!!!

The doctor finally came in yesterday and pulled Lisa's last chest tube!! He also informed her that she now holds the record for most surgeries to repair chest tube issues. Not exactly the record she was hoping for, but she's definitely left her mark.
After her chest tube came out, Lisa even felt inspired to do a little art therapy. Her spirits were lifted and she now is looking forward to getting out and starting her therapy. We anticipate that she will be released soon!!

Posted by Renee

Do We Dare Hope?!

One of the doctors came in earlier and said that if Lisa behaves herself, Dr. Meyers has given the go ahead to pull the last drain tube out in the morning!! This was the news that Lisa has been waiting to hear for the last four days and does not plan on getting a wild hair this evening:)
She is continuing to enjoy her solid foods even though she is on a low fat diet until the chest tube comes out. We thought it was funny that she is on a low fat diet. Who would have ever thought she would need that?
Aunt Nancy and I had our changing of the guard moment earlier. She has arrived safely back in Kentucky and did an excellent job taking care of Lisa! We can't thank her enough!
Please continue to pray that Lisa is past the last bump in her road to recovery. She is so ready to be out of the hospital. It's hard to believe Monday will mark one month since Lisa received her transplant. She still feels so blessed to have received this gift.

Posted by Renee

Here's the latest.....

The past couple of days have just been spent with Lisa continuing to do her walking on the treadmill and watching the fluid in her chest tube continue to dwindle. And dwindle it has, so, as Martha Stewart would say, that is a very good thing. The doctors are definitely pleased with the progression of the chest tube leakage but Lisa is still waiting patiently for them to remove it. And, the sooner the better!

In addition, Lisa underwent another procedure this AM, a bronchoscopy, which is a standard procedure for transplant patients which enables the transplant team to check the health of Lisa's new lungs and look for any signs of rejection. Up to this point, her lungs have been functioning very well so this would be a good confirmation of that fact.

On a happy note, Lisa was given the okay this afternoon to resume solid foods so she is awaiting a nice spaghetti dinner this evening. In the meantime, once Lisa was given the okay for solid foods, she did enjoy a light snack to hold her over until her dinner arrives. And, we did stay away from the blizzards this time around. :)

Tomorrow will be the "changing of the guard" as Renee will be coming to spend a week with Lisa and I will be heading home. I was really hopeful that I could bust Lisa out of here and get her settled into her home away from home before Renee came back but it just didn't happen.
Even though there have been lots of ups and downs this week (probably more downs), I feel fortunate to have been able to spend this time with Lisa and will miss seeing her smiling face each day.

Posted by Nancy

The waiting game continues.......

Lisa spent the night and most of this morning in the post-op area under the watchful eyes of the team there. When I arrived at the hospital, I was very pleasantly surprised at how well she looked and how she was doing. She was alert and even managed to say hello to her dad and sister, Renee, when I called them with their updates this AM. The rehab team came by this morning and Lisa took a good 10 to 15 minute walk down thru the hallway. Since moving back to her room around noon, Lisa rested for a while but then also was able to walk on the treadmill for 15 minutes. She does have some pain which she is able to manage with her bedside pain button. Dr. Crabtree came by late this afternoon and said they were hopeful that this latest surgery will resolve this remaining issue but they plan to continue monitoring the output from this chest tube throughout the night and hope to know more in the morning. If all is well, they may let Lisa have something to drink tomorrow. No word yet on when she may get some solid food but we are hoping that that will follow soon. At this point, we ask that everyone continue their prayers that tomorrow we see the end to this chapter of Lisa's transplant "adventure".

We appreciate all the prayers and words of encouragement. It helps tremendously and we will continue to keep everyone posted.

Posted by Nancy

Update to the update

I just have to pop back on here with a somewhat comical update to Lisa's surgery update below. Since I last posted, I have gotten to visit Lisa in the post-op recovery area. She is doing well, but, of course, in some pain and still somewhat groggy. She first wanted to know, of course, if I had talked to her family and I reassured her that I had already given a full report to Renee and she was conveying the news to all of her family members. So, then, her next concern was, "Maybe you can update the blog.". So, she didn't want to leave her friends and other family members hanging. I told her I had posted an update already. That's our Lisa! She doesn't like to leave any loose ends, ha!

Posted by Nancy

Surgery update

Lisa went back to the OR today for repairs to take care of her remaining chest tube leakage. Since Lisa had already undergone laproscopic surgery to repair this same thing about a week and a half ago, the doctors decided this time around that they would try a different approach and do an incision to make the repair. Dr. Crabtree and his team took their time in making the repair and even waited some time afterwards to watch for any leakage before calling the surgery complete and, hopefully, successful. There will still need to be a "wait and see" period for at least the next day or so before they can say with 100% certainty that the repairs have taken care of this problem once and for all. So, we would appreciate everyone's continued prayers as we all know how powerful prayer can be. Here's hoping that this surgery today has removed the last barrier to Lisa's recovery and discharge from the hospital.

Posted by Nancy

Is three times the charm?

Lisa and I have spent most of the day in anticipation! Since last Tuesday, Lisa's doctors have been trying the wait and see method by checking each day in hopes that the drainage from her remaining chest tube would finally dry up. Alas, it was not to be! During this time period, Lisa has not had solid food and has become more and more HUNGRY for some real food! It had come to the point that all she could think of was food! Yesterday, we had to express some frustration for the "wait and see" approach because there seemed to be no end in sight. Lisa's doctor, Dr. Meyers, has been out of town for several days and is not due back until Wednesday, but his colleague, Dr. Crabtree, has conferred with Dr. Meyers and decided the best course of action is to go back in to repair whatever is causing this leakage. So, sometime tomorrow, Lisa will go back to the OR to have the necessary repairs done, once and for all. This should finally put Lisa back on the road to recovery. There is a bright spot in all this and that is that they are letting Lisa eat anything she wants until 3AM tomorrow. So, looks like my job until 2:30 AM is to fetch Lisa any food she wants and can get down before 3AM. So far this has included cheese pizza, a large pepsi, and a Butterfinger blizzard. Oh, and let's not forget the peanut butter and crackers she chowed down on while I was on my Dairy Queen run! Hey, they said she could eat fatty foods! She is now resting comfortably with a full belly and planning her next food attack.

In other news, Lisa was able to set a new record on the treadmill today by walking 45 minutes (20 minutes this morning and another 25 minutes this afternoon) so she is still doing great in spite of her involuntary fasting. She looks great and continues to amaze me with her great attitude. All of the staff have been very caring and are taking excellent care of Lisa.

Also, want to give a shout out to Lisa's friend, Paul, who is celebrating his birthday today and stopped in for a visit earlier this afternoon. Six and a half years post-transplant and still going strong! Happy birthday, Paul!

Posted by Nancy

My 2011 Derby

It wasn't at home; it wasn't even in Kentucky, but I did get to see the wonderful Kentucky Derby from my hospital room today.  My aunt Nancy and friends Paul and Kristi shared the experience with me watching on the itty bitty tv in the room.  It was quite comical actually.

Things are still status quo with me; just waiting for this fluid volume to keep on decreasing and trying not to obsess about eating.  :-)  I don't expect to know much more on that front until tomorrow.  So, in the meantime, here are a few pics from my Derby day.  Thanks for all of the encouraging messages I continue to receive - they help me so much!!

Gifts from my awesome friend Greta

I pretended there was a mint julep in my glass

My niece Laurel sent a horse to help me celebrate

Jockey Lisa

Paul, me, and Nancy awaiting the post parade

Yes, seeing 19 horses on that screen was a stretch  :-)

Happy Race Fans

No Soup For Me!!

I spent the day wishing for food, any kind of food, but it was not to be. We were still in the holding pattern, watching the chest tube fluid trickle and avoiding food so to keep that fluid a pinkish color. I am finally getting some liquid food (TPN) by IV tonight. After not having anything to eat since Tuesday at 6pm, I am ready for something!!

I asked Dr. Beyers if there was anything I could do to help with the waiting, and he said "think dry thoughts". So here I sit thinking of the Sonoran Desert. :-)

Yesterday and today have been a little rough around here. There has been lots of "let's wait and see" and needlesticks. Yesterday was very long due to the fact that we weren't sure what the plan was for dealing with the chest tube. Last night they let us know that they were going to check chest tube drainage in the morning and decide from there. In the meantime last night they started giving Lisa lasix to help with swelling of her legs. Lisa's legs look like a 9 month pregnant woman's!! It looks very weird on Lisa. They also gave her two units of blood because her H&H(blood levels) had been a little low. (normal after a big surgery)

This morning the drainage was better but they still didn't want her to eat or drink. The amount and color were back to normal so they watched today and in the morning they will check again. If it is still following the same trend in the a.m. she may get to try eating again. Yay! That has helped raise Lisa's spirits a little. It took some effort and soaking the bathroom but I got her hair washed today which also made her feel better. Tomorrow I am heading home but I am leaving Lisa in the hands of our great Aunt Nancy. Hopefully Lisa will get to be discharged before the Derby on Saturday, but Nancy is coming prepared with her laptop in case Lisa has to celebrate at the hospital.

Posted by Terri

Quote of the Day: "Lisa is unique and frustrating." :-)

Those are the words said by Lisa's doctor about 1 hour ago when they saw more milky drainage coming from her chest tube. They are quite stumped as to why yesterday it looked fine and today it is back to milky. The plan for this evening is nothing to eat or drink again and they will check drainage in the morning. Needless to say Lisa is just as frustrated as her doctors. Besides this last chest tube Lisa only has one regular IV left since they took the central line out of her neck last night so she is VERY frustrated with this chest tube. Despite her "nemesis" rearing it's ugly head Lisa is still staying positive and just taking things one step at a time. She is anxious to get to her home away from home but realizes that it is better to try and fix a problem now rather than get home and possibly have to be re-admitted. Lisa's doctors are very positive that everything will get resolved and they have said the lungs look great.

Unfortunately, Lisa had another migraine earlier today and didn't sleep very well last night so she suggested I take Avery and my mother-in-law Maria to the St. Louis zoo while she slept for a while. We went for a few hours and had a great time. Avery even got Lisa a monkey stuffed animal just like hers to hang in her room. Luckily when I got back her headache was better and she looked at our pictures. She is very excited to go back to this zoo since she hasn't been there since the 80's so hopefully when some of you visit this summer you can enjoy the zoo and other St. Louis sights with her.

Posted by Terri

Morning ventings

Good morning all, Lisa here! My new nemesis and barrier to being discharged from the hospital has become a stubborn chest tube. The doctors would like to see the fluid coming from this tube to be of minimal amount and clear appearance. The amount has been no problem, with very little new fluid produced in the past several days. However, the appearance keeps ranging from clear to milky and the doctors don't want to remove it while milky. So we are watching and waiting again today and I am trying to find some patience. (I can hear my Mom's voice in my head: "Patience is a virtue Lisa").

Day 16 - Still Moving Forward!

Today didn't start exactly as planned but was still a good day. The plan was to remove the final chest tube today but the drainage was still a little milky so it was decided to hold off for a little while and check her chest x-ray and decide from there. This evening Dr. Meyers came by and said that everything looks good and as long as everything stays the same last chest tube should come out tomorrow. Lisa has also made some progress with getting more of her "accessories" removed. One of her lines that gave her pain meds has been removed and they have placed a regular IV so that they can remove her central line in her neck this evening.

During therapy today she did a record 30 minutes on the treadmill. Later in the day a balance test was performed and she did great! She scored in the top 1 percentile. She also took a walk through the halls this afternoon.

It has been so wonderful being here to see the great progress Lisa is making everyday. Everyone here has been so nice and friendly (especially Paul and Kristi). Avery is enjoying her first out-of-state trip and running through the long halls at the hotel. She is definitely keeping Maria busy. Hopefully Miss Avery and Lisa will get to see each other (even if from afar) before we have to head home on Friday.

Posted by Terri

First Official Post by Lisa (Post-Tx)!

Warm Greetings to all of my blog followers! I thought I would let my sister Terri off blog duty tonight and get it in on some of the action myself!

My sister Shannon returned to Maryland yesterday afternoon. Arriving just before her was my replacement caregiver Terri, along with her 1 year old daughter Avery and mother in law Maria. It was sad to say good bye to Shannon, just as it was to bid farewell to Daddy, Michael, Renee, and Nancy earlier in the week. What support and comfort they have all provided!

Today started out on a positive note and kept going from there. At midnight the first of my three remaining chest tubes was pulled and then the next one at 4:00pm. This leaves the last one which will be pulled tomorrow! This is big news because my doctors tell me that I should be discharged from the hospital 1-2 days after the final chest tube is removed, which means Tuesday or Wednesday! I am loving the sound of that!

As far as how I am feeling physically, I would say very good all thing considered. I am still having some pain from all the incision wounds, but it is being managed. I have been sleeping well and my mental state is positive and peaceful. The support of all of you has helped me tremendously, so thank you once again! I better get some rest. Love to all, Lisa