Past Monthly News
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NOVEMBER 2006 UPDATE Whew!! October flew by just as fast as September! It was a hard month, though, too. I was sick a lot and so I was in bed or at home most of the time. But we did get to go to my nephew Hunter's 1st birthday party. What a ham he is - very cute and I think very smart, but I guess I may be just a little partial!! We set up a display for NTAF at the Dillsburg Farmers’ Fair, it is a big one-day craft fair. We did really well; made about $450! Everything we had was donated so our prices weren't out of this world and all the people loved the crafts and the prices. We found a lot of people were telling others to check out our stand. It started at 8 a.m. and by 11 o’clock Brandon had to come home and get more stuff because we were running out of things. 
I made a Halloween outfit for my dog Kola – you could call it a “Howl-o-Ween” costume; she was a school bus! I took her to PETSMART to get her picture taken and they had a contest for the best costume and she won 1st place!!!! She was humiliated but I had fun!!! 
I also have some pictures here of my very best doctor and his assistant. It is doctor McDreamy . . . I mean Dr. Mathier and Tracy. Love those guys!!
Well that was the highlights of my month, hope all is well with you and we will chat next month! Perhaps by then I will have my new heart and lungs. Love, Karin! OCTOBER 2006 UPDATE Where did September go?? We had our golf benefit on the 28th, and it went over very well. Everyone seemed to have had a great time and things went very smooth. I think we will try to do one early next year again. We also walked for the American Heart Association on October 8th in Harrisburg. That was fun and it was a beautiful day for a walk. I will post those pictures once we get them back from the American Heart Association. I am already thinking of ways to raise more money for next year’s walk. We only found out about it a week before the event, but we reached our goal of $300 in just a week’s time!!!
 Other than that there is not much to report. I did start to get a cold but threw it off before it went to my lungs. Got pretty sick for a couple days but not bad enough to go to the hospital. Keep those prayers coming!! Love and peace! Karin! SEPTEMBER 2006 UPDATE August went by very fast! With the very humid weather, I stayed in my nice air conditioned house most of the month. But every chance I got to be out, I did so, even if it was to just hang out in the yard with the dogs. We did go to Raystown Lake for a week with our friends, Jen and Skip and Skip's brothers. We had 2 boats and It rained everyday but was still nice enough to get some boating and swimming in. It was so nice because I could actually go ALL the way in the water. Last year I could only go up to about my knees because of the medicine pump that I was on all the time. I really had a good time and was able to do more than I thought I would be able to do. We are already making plans to go next year.
Still waiting for that call! My transplant co-ordinator said they have not been doing many heart and lungs lately, so hopefully it will pick up. I pray everyday and have been really more anxious than usual. I am getting frustrated because I am very sensitive to salt in the first place and lately it has been getting worse. Too much salt makes people retain water and I have been really good at watching it, but it just seems like it doesn't matter what I eat, I swell up. I don't want to admit it, but deep down I know it is probably a sign that I am getting worse. And what frustrates me is that I am to the point that I just have to wait it out - even more medications will not help. As my doctor in Hershey said, "We are WAY outside of the box with you already!" Remember that we have a golf outing at the end of the month. We really need players, or we may have to cancel or postpone it. I know the day that it is on (Thursday) is playing against us but please, if you can play or get a foursome together, I promise it will be a fun day!! Love and Peace, Karin! AUGUST 2006 UPDATE Hello everyone! This past month was pretty uneventful. I did go to the emergency room once because I had been getting sick to my stomach for three days. Usually my potassium drops but all my med levels were good so I got to go home the same day. Other than that, I have been going to pulmonary rehab twice a week and staying in the house the rest of the time. This heat and the humidity is really hard for me to take. Thank God for my air conditioning!! Peace and love, Karin! JULY 2006 UPDATE After being in the hospital at the beginning of June, things just seemed to go downhill a little more! I had to go to Pittsburgh on the 12th, just for a routine checkup with my cardiologist and also to update some testing for the transplant list. My cardiologist appointment went well; it was basically "Hey, you look good, keep doing those six treatments (I got yelled at again!), see ya in 3 months." I also did a six minute walk and I think I did well on that, considering I was still getting over being sick.
Having a baby is a very good possibility as long as I don't have any real big problems within the first 2 to 3 years. I was glad to hear that but he says it does scare the doctors a little and that they haven't dealt with a lot of those situations since most of their patients are older.He said in the last 15 years I think that there have been about 6 or 7 women who have been able to have babies. We have known all along it will be a challenge but what could be more challenging than what we are dealing with now??!!  The doctor also asked about the last two times I have been sick. He said I may have just caught a bug but that he also thought it was more likely that my lungs were getting still worse. But it was hard to determine since it happened only two times. So that was our last appointment that day and we went to my "grams" (grandmother) and ordered a pizza and visited with my Aunt Joni and Uncle Bob for a little and then I hit the sack. I was up all night sick to my stomach - nothing would stay down - NOTHING!! So I went to get a bone density scan done in the morning (9 AM), that showed that my hip density decreased 13% and my back 8%! Not good results, and I am waiting to hear if there is anything I should do or can do at this point. After that I was still not feeling well so we went over to the Emergency Room. They gave me fluids and some potassium and had me eating, so we finally were able to head home about 3 PM. For Father's Day, Mom, Dad and nephew Hunter came over to Brandon's parent's house. I had made Lasagne for everyone and we had a good time visiting, although it is never enough time together. We also went to a family reunion on Brandon's side the 25th. We had a blast and that really was not enough time together, either. Most of them are from Ohio. We went to Ohiopyle, PA for the reunion-- what an awesome area and the weather was great, not too hot nor humid at all! We stayed till the 26th and drove a miserable trip home; Brandon must have oicked up a stomach bug - he was so sick the whole way home and it rained cats and dogs ALL the way! Well, until next time I write (fingers crossed that next time will be the announcement of my SUCCESSFUL transplant), peace and love to all! Karin! JUNE 2006 UPDATE On a brighter note, in May, my mom and I and my friend Heather and her mom went to the beach for our annual "girls vacation." We had a blast as usual... my "sisters" and I saw Charlie Daniels and he was awesome!! I can't wait for next year's trip. Brandon and I celebrated our anniversary on May 27th. We went to the mountain wilderness alter where we got married and had a picnic lunch and took some pictures again. While we were there it was semi-clear but as soon as we got down the mountain it started to pour down rain! Liquid sunshine just like on our wedding day! MEMORIES!!
Peace and love to all! MAY 2006 UPDATE
The caller said just to take our time getting there, but once we got to the PACU (post-anesthesia care unit) floor about 7 pm , doctors and nurses were at my side getting me ready to be in the O.R. within the hour! The surgeon came and introduced himself. I said, “You're the man, huh?” and jokingly I started to grill him; “How much sleep did you get? Do you know what you're doing?” He laughed a little but he was mostly all business especially when I asked if he would save my old heart for me. He said "Huh??" but he never actually answered me. I told him I was serious but he just kept moving. I was worried that my parents weren't going to make it into Pittsburgh before they began the surgery. I did talk to my parents by phone but I just had time to say, “I love you!” before the nurse was wheeling me away. In fact I had only a chance to give Brandon a kiss on the run. Later my dad told me that while he and I were on the phone he said I was his hero. I wish I had heard that because I am telling you, I was really scared at that point. I hated that they weren't there yet and that it was just me and Brandon at the hospital. I didn't want Brandon to be waiting alone. When my Uncle Jack found out what was going on he rushed over to be with Brandon and Uncle Dan had rushed in from Montoursville too. My Uncle Bob and Aunt Joni and my grandfather showed up about the same time. I remember looking at the clock when I entered the O.R. and it was 8:20 pm . They gave me some IV meds to calm me down and a little sedation. Then they started to put other IV's and central lines in. I must have fallen asleep because I don't remember them putting a line in my groin or in my left wrist. However, I woke up while they were putting two huge central lines in through my neck. It was a lot of pressure there and then it was hard to move my neck. I had EKG wires going to just about every part of my body. While they were doing my neck I was joking around with the staff that we were going to order pizza. I remember saying something like that wasn't fair because I couldn't eat it. I said I would rather have a beer instead. They were talking some O.R. trash talk and I said I knew what they were up to because I used to work in the O.R. too! On the serious side though there was one girl who just held my hand the whole time. That was awesome! They had just finished putting the neck lines in when I heard the phone ring. I remember saying to the staff “This is the final call!” The anesthesiologist walked in a minute later and I could tell by the look on his face that the surgery had been cancelled. I think I started crying before he even reached me. He explained that the donor heart had started to fail and since I was still in such good shape they didn't want to take the risk of using that heart. He said that if I was knocking at death's door, it might be worth the risk and it probably would have been a different story. The surgeon came in too and talked to me then they covered me up and took me back to PACU. By then it was 10:00 pm . They had to remove all the lines one line at a time and had to hold pressure on the sites for a good 15 to 20 minutes each. So it was about an hour later before they finally let family come back to see me. I was surprised to see my mom waiting for me there. Apparently my parents had arrived just after the surgeon told Brandon the transplant operation was cancelled. I got dressed and went to the waiting room and had some time to visit with my nephew, Hunter, before Scott and Crystal and my parents left to begin the long drive back home. Brian and Kelly got the word en route so they also turned around and returned home. Brandon and I spent the night in Pittsburgh but have now returned home. We are still optimistic and have begun to unwind. My neck is sore from the lines they put in and it still hurts to move, but it is slowly getting better. My leg is still a little sore but really bruised. I am going to be truthful here. This second “dress rehearsal” was a very tough experience. I hated how much more rushed everything seemed and how fast so many things happened only to have the surgery cancelled. I hated not being able to see my parents and brothers and other family members beforehand before being rushed into the OR. I also really missed being able to have some private time with Brandon for a “heart-to-heart”. Being told that it was a “no go” after all that and having been sedated and prepped in the O.R. for an operation that didn't happen was devastatingly disappointing. (Karin's stronger language here didn't pass the censors!) But, in spite of the disappointment I know the doctors do want what's best for me and it was a difficult decision for them to make, too. I realize that eventually all this will be worth it. I know I am getting closer to living a fuller and longer life and fulfilling that dream of playing a basketball game. I really appreciate that many of you have been praying for me and supporting me in other ways too. Thanks so much to all for your support and your prayers! Please keep them coming! He is listening up there!!!! Peace and love to all! APRIL 2006 UPDATE April went by really quickly and there is really not much to report. Easter was nice, we spent it with Brandon 's family.
There was a wild game shoot that was held for my benefit, unfortunately, I could not be there. But it did really well and from what I hear everyone had a good time and I hope we can do another one again. Thanks to all who participated and a great big thanks to the coordinators, especially Dad, Cliff Forsythe and Jeff Mock! Peace and love to all! MARCH 2006 UPDATE As many of you have seen and heard we had a false alarm on March 16th! (see link below for details). At least I know now that I really am high up on the transplant list! Every time the phone rings now I get a little excited!! I now dream of the days when I will be able to run down the street, or go for a leisurely walk and be able to go and go and go!! I just can't wait now. To be able to experience some really new things; I have never known life with normal organs. Although I never thought of my organs as bad before all of this, I am sure I will see a major difference. We got pulled over for speeding on the way to Pittsburgh and although the officer let us go eventually, he did not understand the urgent circumstances we faced. Once I am able to get back on my feet I want to meet with police departments and make them aware of the time limits involved with transplants and that the patient is responsible for their own transportation. The police officer told us we should have been taken by ambulance; we don't have that luxury, we have to get there on our own. I know that they hear all kinds of excuses and stories, and yes, I told Brandon he should not be going that fast in the first place. And a huge, huge thanks to my cousin John Marks (he is a PA state trooper) for his help!! Once there at the hospital, I was so extremely happy. I really wasn't nervous at all. It helped having all of my family there and I wanted to be strong for them. I would rather be on this end than to be my Mom, or husband, or whoever. I don't think I could be this strong if I had to watch one of my loved ones go thru this. To me, this is just what I have to do - this is and always has been my life…and will continue to be. Whatever I have to do to live, I will do! Thanks to everyone for their support - emotional and spiritual. Please “post-a-note” to me on the web site if you have time. I love that feature and I usually check it every day and try to write back if you leave your email address!! Peace and love to all! FEBRUARY 2006 UPDATE The month of February was okay. I went for a follow up to Pittsburgh and things went really well there. It was a neat appointment because there were other medical personnel like doctors and nurses from other hospitals there. They came in to talk to me about my disease, like how I live with it and my restrictions and medications. They wanted to learn first-hand from the patient instead of going to medical conferences and just getting lectured about it. I thought that was cool that I may be helping them learn something new!! Then my doctor asked them to leave and he talked with me one-on-one.
We know that I am getting close to being transplanted so he told me about my stay in the hospital afterwards, it will be at least a month and I won't even want to go home until then. He scolded me because I haven't been doing my breathing treatments as often as I should be! He said, "I took that 'blankty-blank' needle out of your belly, you better be doing at least SIX treatments every day!"
He is so cool - I love him. I am so blessed to have such great doctors there at Pittsburgh and here at Hershey, both. Then I did a six minute walk and I feel that went a lot better than the last one I did in December. 
Karin! JANUARY 2006 UPDATE
I have been getting out a lot more, we have started to go bowling for exercise and fun. The wheelchair basketball was sssoooooooooo much fun! Karin! |
I met with a lung doctor and we talked for a good while about everything from having kids later to keeping my old heart. He said it is unusual for a person to have two false calls and that the two surgeons I had met were two of the best. As far as keeping the heart, it can be done but it takes a lot of push to get it, and it just isn't worth it sometimes (you know I will still try!). One lady actually has her old "smoker's lungs" and she takes them around and does speeches at schools about not smoking, I thought that was a great idea!!
I want to thank everyone for phone calls and the prayers while I was in Hershey Medical Center last week. I went to the E.R. on Sunday the 28th and "escaped" on June 3rd. I had two things going on... fluid overload in my lungs and an infection that made
it's way to my lungs. It all hit me so fast and took so long to finally feel
good enough to come home. I have two very strong antibiotics that I have to
take for 10 days.
Oh, I was sick. I had a cold for about 2-1/2 weeks, ended up as bronchitis, I think. I spent one night in the hospital and they gave a me dose of I.V. antibiotics because the home antibiotics just weren't getting the job done. So we finally got rid of that; it seemed to take a while. 
Other than that, we have been doing quite a bit of bowling and I just got a Mickey Mouse ball (thanks to my Dad!!!) I can't wait for it to get here so I can start using it!
Brandon has started up his own business again, full time. He is currently doing a kitchen addition and has been so much happier since quitting his maintenance job with the school district. And I have been doing some of the bookkeeping for him and I love it; it gives me something new to do during the day and I love working with numbers.
I’m getting closer and closer to receiving my transplant – I can tell this is my year! 
Praise God-- things are going good! No hospital visits this month!! The new medication is working well, although I admit I get lazy about taking it sometimes. You may recall, I am supposed to inhale it every two hours and do it at least six times a day. Sometimes I do less and I have to train myself to be more on schedule and get at least seven inhales in. Otherwise, I still get sick, but not nearly as bad, and usually only in the mornings as soon as I get up. 
My friend Brian (in picture on left), who is 34 years old and had 3 strokes last year, and I have been going to adult day cares and nursing homes and making speeches to encourage and motivate people. It is so neat to talk to older people who have been through some of the things we are going through and getting their advice. I will never forget one lady that was listening to Brian's story and her mouth just dropped and later she told us she has been trying to get her son to go to the doctor and that a lot of the things Brian experienced during his strokes her son has experienced, too. Just to know that we may be helping others is such an awesome feeling, and how God can turn difficult problems into blessings. 
Unfortunately the weather did not cooperate, so not too many people came out. I had a blast and most of the players came up to me and said they were so glad they ventured out, they had a blast! And we all have a better appreciation for those who are in wheelchairs all the time! It's been a long time since I laughed so much and I hope that we can do another one again! I want to send out a special thank you to American Home Medical Equipment Company. After the owner came and saw what we were doing and why, he donated the use of the wheelchairs (originally there was a small fee)!!! A big thank you!!!