It's been almost a year now!!!

Well it has been almost a year since my surgery and thought I better post something since it has been almost 9 months from my last post. I am doing well Had a bump in late Feb. with pnemonia and then a spat with CMV in Mayish because my donor was CMV positive and I was not so I figured eventually I would have it. But over all life has been good. Being with my family and watching Shelby grow each day because of the gift I received is beyond words. I think about my donor every day. I hope anyone that reads this post will think about becoming a donor if you havnt already done so. When I was younger I knew about being a organ donor and even knowing that some day in the back of my head I might need a lung transplant it never sunk in. It didnt sink in until after my surgery how becoming a donor is the greatest gift you can give some one, which is new life. You know the saying " you dont know what its like until you experience it" well let me tell ya that there are over whelming emotions of graditude for the gift that I received. Becoming a donor would touch many peoples lives. At times I wish that I could become a donor to know that I would touch many lives with that gift. I plan to post some more pics soon! Take care





Lonye

Crazy monday!

Well, Monday morning we headed up to Seattle at 3:30 in the morning like usual, with Deanna driving me trying to sleep some :-) and Shelby in the back seat playing! Got all the tests done and met with Dr Edelman.  My PFT's were about the same as the last four weeks or so. Dr Edelman said that it may be a sign of some rejection and said that he wanted to schedule a CT scan and a bronch so he could do a biopsy. With having both test done it would determine if it was the start of rejection and if so, that he would start a regiman of a high dose of prednisone, iv form that would be done in the hospital for three days, which would mean i would have to stay in the hospital for three days. The bronch was scheduled at 3:00 but we got done with the CT scan early so they started the bronch at around 2ish. This was my third bronch that i have ever had and the first time ever having a biopsy. When they do a biopsy there is a higher risk that they could puncture the lung. Well that is what kinda happened they dont call it that they have another name for it and i am not going to try to spell it either. When that happens normally they let some one go home and just monitor it, but since my lungs are brand new they wanted to keep me over night to make sure it corrected itself and if not they would have to put chest tubes in to correct it, which didn't sound fun at all. So needless to say we were not prepared for the over night stay. Shelby had been up since 3am and Deanna had been up since 2 so I wanted them to head home to get rest and I didn't want Shelby to miss school on Tuesday. It was a very emotional time because Shelby didn't want to leave me she saw the docs put a 02 mask on me and it made her think back to when I was sick so she thought I was sick again and needed new lungs again. It broke my heart watching her being upset and trying to figure out what was going on. Deanna and Shelby finally left around 6:00 and I headed up to the 4th floor for my night stay. Lee headed up and got there around 9:30 and stayed the night with me which was very nice. He didn't get much sleep not because of the chair he had to sleep in but he was on the phone with Holly from 11ish to a little after 3 in the morning wow! My lung corrected itself so that was good. But we still had to wait till the biopsy report came back to determine if it was rejection or not. The docs came in around 1:30 the following afternoon and said everything looked good my air ways were very clear and everything looked real good except some slight inflammation and that was about it. So the plan is to just watch my pfts that i do at home and see them on the 25th. I think the word rejection is a scary word for Deanna but some reason I wasn't that scared when he said that I was more disappointed then scared. maybe because I have talked to tx patience about rejection and stuff. Next time we go up were gonna take an over night bag so we're prepared for something like this again. I am glad that I take all my meds with me when I do these visits because it was hard to get all my meds believe it or not when I was in the hospital. Well thats it for now life is good and I will post soon! Thank you for all the messages and continued prayers they mean alot to me!

Having fun in the snow

Lonye's photo journey

Just an update.

Nothing much has been going on here.  I go back to Seattle on the 4th of Feb. for the usual visit. I will have the ex-ray, blood work and breathing test done.  

We are all doing well here and I am looking forward to doing some of the things that I haven't been able to do for a long time like working in the yard, washing the cars, etc. I know it sounds funny but I was so happy that I was able to sweep the garage floor and vacuum the other day :-). Its funny I catch myself some times not doing something or asking Deanna to do it because I couldnt do the task before the TX and then the light bulb comes on that I can do it now! The energy that I have now is so different than before and it feels so good to do things again and help out whereas I couldnt before. Deanna and my brother did everything up to the transplant.   Now they can rest and I can take over :-). 

I mailed off a letter to the donors family a few weeks ago but have not heard back from the agency that handles the contact with them. I am hoping they will respond, but I will understand if they have choose not too. 

The new picture is my pill case, it holds all my meds in slots for each day and time slot for a week. Its kinda nifty to have and keeps you organized so you dont miss a dose. My regimin every day is to weigh myself in the morning, check my blood sugars 4 times a day, check my temperature morning & night, check my blood pressure morning & night, check my pulse morning & night and I have this little machine that I blow into that checks my breathing numbers I do that morning & night as well.  My brother and Deanna tease me because I have this black carry- on like suit case with a handle and rollers that I wheel around the house with my stuff in it. 

I can see how some one that did not have CF that wasnt used to a regiman of meds and dealing with taking care of your self in that way would be very over whelming to some one and scary to say the least. Looking at what was given to me, the trade off of what I have to do is just a small thing that I am more then willing to do for myself and my family. Some things that people dont know that a transplant is a trade off of sorts. Even though I was given a second chance and that my new lungs dont have CF anymore the rest of my body still does, so I still have to deal with having diabetes and also continue to have to take 12 enzyme pills with each meal to digest my food. The new things I have to deal with is the possibility of rejection of the new lungs. I guess to step back a few when I first was told that I needed to check into having a TX which was back in the fall of 2003 I wanted to talk with people that had had a transplant and not just any lung transplant patient but some one that had CF and that was around my age. The first thing I did was get on the web and read about lung transplant and what it detailed in terms of the process and outcome and survival rate after having one. Most the stuff you read is older stuff, trust me a single day makes a big difference interms of stats. And alot of the stuff sounds like its doom and gloom afterwards. At that time the survival rate for a person with a lung transplant was usually 5 years. So thats why i wanted to talk with real life people. I talked with many cfer's. I met poeple on the waiting list and ones that have been post transplant 10 years +. I wanted to make sure that I could take care of my family if I had it done. I wasn't afraid of the work that it would take after transplant in terms of the regimans and meds. So back to some of the new things i have to deal with.  One is rejection, like i said above because of the rejection drugs that I have to take for life they will reek havic on my kidneys so thats one reason why i have a blood test every week to check the levels of the drugs in my system and kidney funtion. The longer a person lives with taking rejections drugs the greater the possibility of that person having to have a kidney transplant down the road.    So thats why there is a very intense evaluation before the transplant to make sure every organ in your body can handle the surgery and the intense medication regimen.  

Like every illness there are new drugs coming out all the time so tomorrow or some day there will be better drugs for transplant patients. Just like with CF when i was born i was not suppose to live past 10 but with each year and new drugs and new research the number kept increasing. Right now i think the medium age for some one to live with CF is 33 or 36. Just like not all CF patients are alike same with transplant patients and thats why I chose to talk with real people rather than read what its about in books or on the web. Its kinda funny before the transplant I never liked coffee I would drink it with a lot of added stuff on occasions and now I drink several cups a day still with added stuff in it though and also most of you know that I never talked about my CF it was something I kept private and now I cant shut up :-). Well I will post later and thanks for reading!

JUST GOT BACK FROM SEATTLE!

We got up at 2:00am and got on the road around 3:30.  We took Shelby so since it was a one day appointment we decided to not spend the night in Mercer Island.  We do miss the company of Patty and Ed though.  My appointment was at 7:30 and that is the time we arrived :-).  My lung function was up to 76, which I was happy about.  The ex ray looked good as well.  Some meds were changed one was my pain meds for evening that was lowered and prednisone will be lowered again on the 23rd.  Over all every thing went very good and we don't have to go back for another 3 weeks so we like that.  They did say at my 3 month date we will have to have another bronchoscopy done and a CT scan so that trip will be an overnighter or two.  The new picture is Josette and I, she is a awesome nurse.  She has been the one to draw my blood from my PICC and does my PICC dressing change.  She is a very neat lady.  A PICC for those that don't know is I guess what you would call a long term at home IV.   I have a IV regimen that will last till the 23rd of Feb.  I have had the PICC since Oct. you can have them they say up to 6 to 9 months all depends on how you take care of it.  You have to keep it dry when you take a shower so I use a small kitchen bag and wrap it around the PICC area and tape each end with tape on to my arm.  This is the longest time I have ever had one all the other times they were about two weeks.  They dont hurt or any thing so its no big deal.  The last few I had did hurt like hell when putting them in because of my veins collapsing or scare tissue.  That is not fun when you run into that let me tell ya!   Well thats about it for now we will post soon!

7 weeks tomorrow!

Well tomorrow it will be 7 weeks since I had my transplant!  So far I have been feeling awesome for being transplanted 7 weeks ago.   My pain meds. have been lowered so been having a little pain in the chest area but its all good because I do want to get off of them.  If some of you remember I was on pain meds before the TX because of major pain that I was having in the lower back area, I had this pain for almost two years.  I have had several MRI's, physical therapy and some type of shots that were done in the lower back area.  No one could figure out the cause.  I know up to the TX a lot of people were concerned that the pain was either caused by the addiction of the pain meds or just plain in my head.  Sorry for being blunt.  I had a feeling that the pain since it was so hard to describe and figure out the cause,  that it may be related to my CF and since the TX I have not had this pain so I guess I was right that my diseased lungs was the cause of this pain that I was having.  So I am thankful that I don't have to worry about dealing with that pain, which I was kinda worried that I would still have to deal with it after surgery.   I am also retaining some water from the prednisone which they are lowering each week.  I am on 15 mg in the morning and 10mg at night so with that and the healing should be going away soon, well thats what there telling me.  I have also gained weight.  When I went in for the TX I think I was around 118 lbs. or so and this morning I was 143 lbs.. Some of it is water but still I have gained weight which in my 41 years has always been not hard but truly discouraging.  Most people don't understand that it is just as painful, discouraging etc.. to gain weight as it is to lose weight, it really is.   Keeping my blood sugars  under control have been challenging.   I think I have been doing a really good job keeping them under control though.  With the prednisone it makes them go all out of whack but once all my meds are adjusted to my final dose then it should be easier.  In talking with the nurse from the last visit that we had at clinic they don't seem to get that I am way farther ahead in my progress in terms of my body movement?   What happens is when you go to clinic the nurse comes in that is part of the TX team and talks to you about how your feeling and if there is any adjustments to my meds to make sure that we have those down and make sure we understand that there is a change.  So at that appointment she asked if I could get out of the chair with out holding onto the arms of it, mind you I was doing that the second week out of surgery, then she wanted me to do these spider wall exercises where I put my hand on the wall and crawl up it with my fingers to stretch the under arm area because of the surgery, needless to say I have had my arms over my head many times using my arms for reach but I cant tell you when so I  don't incriminate myself, so its stuff like that that makes ya feel a little frustrated.  If this was the first time I had met her and talked with her then I would be a little more patient ;-) or as patient as I could be.   I am very happy with the University's program and the care and treatments that I have received.  Would I have a TX if I knew what I know now the answer would be heck yes and would I let them do it the answer would be the same it was a wonderful place with compassionate and caring people.   I think my plan is to let the University of Wa. to continue my follow up for the first year or a little after and then have my pulmonary doc in town take over my health, but we will see.   I am not fond of the OHSU CF center where most of the U of W TX patients go to if they are living in Oregon.  But we are going to just take it one day at a time and for now its gonna be U of W.   This week I wrote a letter to the donor's family the Process is that you write a letter and mail it to Lifecenter Northwest which is the organization that handles the placement of organs.  They review the letter to make sure that there is no identifying information about me and then forward it to the family.  Then its up to that family if they want to respond.  They also have the choice to write to me as the recipient.  We did find out that my donor  was from Alaska and was 35.  The Lifecenter Northwest can only give you little bits of info.  I guess he was doing some remodeling and fell from a ladder.  Please remember him and the gift he gave me.  Well we have an appointment in Seattle on Monday at 7:30 so were gonna get up super early so we can make it a day trip, so we will post after my appointment.  Thanks again for all your prayers and bye for now.

5-1/2 weeks post transplant

Lonye had an appointment with Dr. Edelman today.  He seemed a little grouchy.  Maybe because it's the first day back after the holiday, who knows.

He did say that Lonye continues to do well.  He did make a point to tell us that if something happens they will insist that we get back up here.  We assured him that we do have the ability to return "at the drop of a hat".  With that said, we will be returning home after our appointments this week.  We will be required to come back up at least every other week for the next 6-9 months.

The transplant nurse spent a lot of time today explaining the healing process and the importance of exercise.  It's a little frustrating at times, it seems like we get mixed messages.  The last time we were here, they told us Lonye could not be on a tread mill for at least 6 months.  Today they said it's no problem, he should be on the tread mill.  At this point he's happy to be able to walk at all.  He did not have the energy prior to the transplant.  It all takes time...........

Back on Mercer Island

We drove up this afternoon because Lonye has appointments at UW this week.  Ed & Patty called us on the way up.  They were headed over to Dave & Tanya's for dinner and wanted to know if we would arrive in time to join them.  Their daughter Tracy was there too, we hadn't met her and her family yet.  

Dave and Tanya live in Sammamish.  We got directions and drove over.  Dave put the steaks on the grill when he heard we were on the way.  The meal was fabulous, as was the entire evening.  We had a very nice time.  We met Tracy, her husband Scott and their kids, Joseph, Sarah, Joshua and Elizabeth.  Dave and Tanya have three, David, Jennifer (5-1/2) and Emma.  Shelby would be so upset if she knew that we spent the evening with all of these kids and she missed out.  Don't tell her!!!  Jennifer did ask if she was coming, we met her the last time Shelby was here.

Let me tell you, we are so fortunate to have met the Volk's.  They have become a part of our family for sure.  They have shared in a very special part of our lives and have opened their home and their hearts to us.  They really are amazing people.... the whole bunch!!