Friday, May 25

6 weeks post transplant!  Drugs for stomach issues working fine and I’m feeling much better.  Had a bronchoscopy on Tuesday and the inside of my lungs look good and ahead of the game on healing! 

Good to be back at therapy and doing something to get my strength back.  They were all very excited to see me and marveled at how I could just walk right in without oxygen. 

We had a wonderful meal with Dan and Terri on Sunday.  It was good to visit and Terri is an awesome cook!  First time we have been to their house since transplant and we needed to celebrate! 

Wednesday after therapy Bob went to the Caregiver Support Group meeting at UW.  I stayed home and took a nap!  Our friend Caron from Homer, AK e-mailed first thing in the morning to say she got ‘the call’ and they were at UW.  Bob checked on them and she was scheduled for surgery about 4:30 p.m.   “Dry run” and sent home around 6:30 p.m.  Seems like the potential donor had some issues.  Lungs were not usable.  We hope she gets the real call soon. 

Thursday a trip to Costco to pick up my sunglasses that I ordered.  Besides that, a day of not doing much.  Just breathing….  What a good feeling.

Friday a visit with Dr. Raghu, x-ray, breathing test, and of course, the forever blood draw.  Breathing test showed within normal range and improving!  Yeah!!!

It is getting so much easier to do this test and I don’t dread it anymore.  Chest x-ray looked good too.  Bronchoscopy was good although they are finding something growing from the sample so we will find out about that next week when I see Dr. Rakita.  Nothing to worry about at this point.  Overall, I am doing really well after 6 weeks. 

Went to Pulmonary Rehab this afternoon and did both PT and RT for the first time post transplant.  It was good.  My oxygen saturation rate never got below about 94 which is awesome!!!!  Most of the time it is 98 and above. 

Libby says Violet loves mushroom picking and sent pictures of her with mud all over her legs!  She is having a great time and she couldn’t be in a better place.  She did spend last week-end with Jim, Marci and Cassie and I’m sure she had fun there too.  She is certainly not lacking for attention!!!!

Looking at a change in rv….  Might be a motor home… Bob’s dream is the space of a 80’, in only 25’, with the economy of a motorcycle.  Gotta dream. 

All for this week….  Might be a change in appearance of our blog soon.  Thinking of changes..

Friday, May 18

Had a great time with ‘the kids’ last week-end.  Saturday evening they grilled some flat iron steaks on the Traeger and Marci fixed a wonderful brunch on Sunday morning.  The weather was beautiful and we were able to sit outside at the picnic table for meals!

Monday the staples were removed and that was a milestone!  Feels good to have them out.  Saw an infectious disease doctor who said they found a strange bug when they cultured the fluid from the tube so I am now on an antibiotic for that.  He said it doesn’t really have anything to do with the lungs.  Having a few stomach issues (cramps and bloating) and not sure what is causing that.  Maybe all the meds???  I was supposed to get a routine broncoscopy yesterday but it was postponed until next week because I wasn’t feeling well.

Wednesday we did some shopping (gone about 4 hours!) and I was pretty wiped out when we got home!  It was fun though and wonderful to be able to walk around in stores without struggling to breath. 

The weather has been really nice although cooling down some.  We have been walking around the park every day while it lasts!  I have an appointment at Northwest Therapy on Monday so I can get back into that routine 3 days a week.  It will help build my strength which I need since my legs are still a bit shaky. 

Had stomach issues all week but Dr. Raghu prescribed a medication late Friday afternoon and it seems to be helping. 

The area that was oozing has just about dried up and the incision is healing so we are about through with the dressing of ‘wounds’!  I am also almost completely off of the pain medication and Tylenol.  Just had one yesterday…  Only hurts once in awhile and usually when I move the wrong way. 

I have even helped with some meals this week and washed some dishes!  It has been 5 weeks since transplant and the lungs are great.

Friday, May 11

4 weeks post transplant and counting!  No additional ‘bumps in the road’ so far and hoping it stays that way.  The drainage tube was removed on Monday and the troublesome area appears to be healing.  Have an appointment on Monday to remove the staples (used instead of stitches).  Still have some pain but it is lessening each day and I hope to be off the pain meds in the next week or two. 

We have been walking around the park and it is wonderful!!!  It is something I have dreamed about for a long time, to be able to walk without the aid of oxygen or a walker or anything else.  My legs are still a bit weak so the more I walk the better.  Fortunately we have had great weather lately although still a bit cold. 

Jon & Ched stopped by for a visit on Sunday and Ched brought some pancit and lumpia!  It was delicious!!!!  They were attending a Navy Diver reunion in Bremerton.

Bill and Mary came for a visit on Thursday and we had a nice lunch at the Creekside Café.  Mary brought some homemade cinnamon rolls and they are wonderful. 

Tuesday was a pedicure and Wednesday we had haircuts.  A little pampering was in order. 

Jim, Marci and Cassie will be arriving tonight for the week-end and we are looking forward to seeing them.  They are bringing their truck/camper and have a space two sites down from us. 

We miss Violet but know she is better off with Libby and Richard right now.  I have limited use of my arms for the next 5 or 6 weeks.  Not allowed to raise them above shoulder level, can’t bare any weight on them or reach behind me or lift anything heavier than 10 lbs.  Even opening the cupboard doors is difficult since they are tight fitting.  I am slowly becoming more independent but still rely heavily on ‘the caregiver’ for many things. 

Had a ‘clinic’ visit today.  It includes blood draw, chest x-ray, pulmonary function test and visit with Dr. Raghu.   He indicated I am doing well and he doesn’t need to see me for two weeks!  They are scheduling a routine broncoscopy for sometime next week.  These are usually done about a month after transplant and lets them see inside the lungs to make sure everything is as it should be.  Walking around the hospital today was challenging but good exercise for me.  It is such a big place and of course all the places we needed to be are spread out on several floors.  Dr. Raghu said I was a popular person!  He kept running into people that mentioned me….  Not sure if it was patients or staff or a bit of both! 

Caregiver note:  Car needs washing….  ;-)   I was saving that task for my better half, but paid for the wash today.  Will find another task for her.  Gotta get her back into the work mode.  

Saturday, May 5

Betsy here….

I can’t begin to describe how it feels to be able to breath without effort and without the aid of oxygen.  To just be able to move from one place to another without struggle.  I will be forever grateful to the donor and donor family for the gift of life they have given me.  It is wonderful to have a future again and I look forward to each and every day.

I was released from the hospital on Monday afternoon.  Marci was here with us to celebrate the homecoming and it was a very exciting day.  The recliner works perfectly since it is easy for me to get in and out of without pain.  Since I am not allowed to use my arms to lift myself up, it is difficult to get up and down from a flat surface such as the bed.  No twisting or raising my arms above my head either so I am somewhat limited there.  My legs are slowly gaining strength and I need to walk as much as possible to get some muscle back. I’m hoping to return to Pulmonary Rehab as soon as I’ve healed a bit more.

I did have a minor set-back this week.  We had Tuesday here in the RV to rest, then Wednesday was spent at UW for tests and a doctor visit.  There has been a spot between my breasts where I have had some continuous bleeding.  On x-ray it indicated I had a hematoma (pocket of blood) underneath the sternum and they were concerned enough to decide to put a drainage tube in.  So on Thursday I was readmitted to UW for this procedure.  They kept me overnight and I was again released late yesterday afternoon with the tube in place and a bag attached.  It isn’t draining much now but they decided to leave it in place until Monday when I have an appointment and they will remove it then.  Bob has cleaning instructions and is doing a great nursing job!!!  I am no longer on Coumadin since they felt this was contributing to the bleeding issue.  Evidently the blood clot has cleared so the Coumadin isn’t as critical as they once thought.  They may put me back on it at some point.

The pain has lessened considerably although I continue to take some pain meds periodically.  Imagine when the staples come out, the pain will lessen even more.  They probably won’t be removed for another week at least.  They used staples instead of stitches. 

So I am now 3 weeks out and it feels wonderful.  Even with the few little bumps in the road, I feel I have had a good recovery and the doctors are really pleased with how well the ‘new’ lungs are functioning.  I certainly don’t have any complaints!!!!   

We spent the morning sorting through 3 weeks of mail and paperwork from the hospital.  It feels good to get organized.  Bob is cooking a roast on the Traeger since the dietitian is pushing protein.  I am down 10 lbs. from pre-transplant although my appetite is returning so I will probably gain some of that back.  I have to monitor vitals twice a day, weigh every day and use a micro-spirometer to check breathing.  Bob has taken on the role of pharmacist and believe me it is no small undertaking.  I take about 17 pills in the morning and additional pills at dinnertime and then at bedtime.  Some of the doses vary depending on the outcome of blood drawn (the anti rejection drugs mostly). 

Well, that’s about it for now.  Time for a nap!!!!  Thank you all so much for the well wishes, prayers, encouragement and love.  We couldn’t have made it though this without the support of our family and friends. 

LIFE IS GOOD!!!!!!!!!!!!!!!  I can Breath…….