Diary Index

Caregiver Diary -- Rebecca Minshew 
(Caregiver to Roland Minshew)
 

Over the course of the last month I have read all of the diary entries which have been made through today and know that I will be the only person writing as a caregiver. My name is not Roland but Rebecca. Roland is my husband and the one who has SPH (secondary pulmonary hypertenstion). My husband is not much for writing or computers, so I will be using this diary to express my feelings and concerns during this changing time in our lives.

Monday, September 04, 2000

Ronnie's SPH resulted from liver failure. He was diagnosed with Hepatitis C in 1993 and received a liver transplant on 03/17/00. On the day of the transplant we (the family) were called for a meeting with the doctors about an hour after they took Ronnie for surgery. They explained that when the "floated the swan" while preparing for surgery that they discovered that Ronnie's pulmonary pressures were really high. They said that it was our decision as to whether to proceed with surgery.

Monday, September 04, 2000

The doctors advised us that there was a 20% chance that Ronnie would suffer a cardiac arrest during the surgery and he would not survive it. After pulling myself togeather I discussed the options with his 2 sons, mother and sister. I told them that Ronnie had been prepared for whatever happened when they took him down for surgery. I also reminded them that without the surgery he didn't have any hope and not much longer to live. My decision was to go ahead with the surgery.

Monday, September 04, 2000

Lucky for me, the rest of the family agreed and we told the doctors that Ronnie was in God's hands and that they should continue with the surgery and whatever happened was what was suppose to happen. Next was the waiting...and that was hard. After only 4 hrs into the surgery the doctors came into the waiting room and my heart dropped. I just knew that he had not made it because it was to soon for the surgery to be over. Boy was I suprised when the surgon said that they were finished and he had come through the surgery better than they had expected. Now we would just have to wait and see how he recoverd. Ronnie spent the next 2 weeks (should have been 2 days) in ICU in critical condition and his lung pressures where not coming down even on the Cardene (calcium channel blocker). During his last 4 days in ICU I watched as the doctors made no change in their treatment of him. The medicine dose remained the same, the pressures remained the same and his condition remained the same. I finally suggested that they start trying to wean him from the ventilator if there was nothing else they could do because staying on it was only making recovery that much harder. They removed the swan (so they wouldn't have to see him pressures) and began weaning him. By the next day he was off of the ventilator and the next day he was moved to a regular floor and his recovery begain. He went from weighing 219 lbs before surgery (172 was normal weight the rest was fluid) to 154 lbs after surgery.

We know that all of this was God's work. Normally when a liver patient has PH they are ruled out for a liver transplant. Because Ronnie's PH was not found until the day of surgery and also the fact that his blood type was AB positive (he was the only one on the list with this blood type which is very rare)they did not have a back-up to receive the liver and it was to late to ship it to another hospital. It was "use it or throw it away". This was one of God's miricles.

"If you believe, you will receive whatever you ask for in prayer." Matthew 21:22

Monday, September 04, 2000

Now to update the status of the PH. From March until August Ronnie did pretty good. He got stronger and his liver numbers were coming back good. Sometime around the beginning of August Ronnie started having some SOB (shortness of breath), swelling around his ankles and constipation. Since we thought that this was related to the transplant we went to the clinic to see the doctor. They decide to admit Ronnie to the hospital for a 23 hour observation to alliviate the constipation and to do an echocardiogram since it had been over 3 months since the last one.

That stay turned in to 10 days. After doing the echo the doctors decided that it was not Ronnie's new liver that was the problem but the PH. They preceeded to do a cardic cath, a liver biopsy, a liver scan to check the ducts and arteries, and a lung scan and ultrasound of the legs to rule out blood clots. What they found was that Ronnie's pressures had gone from the 60s after transplant to around 100/40 now. This was not the news we wanted to hear.

Monday, September 04, 2000

This will be my last entry for tonight (or should I say morning as it is now 2:30 am).

When the pulmonologist came in to see us he was rather cold in giving us his diagnosis. He said something like this: The disease you have is a really bad disease. You do not qualify for a lung transplant at this hospital due to your hepatitis C. We will try to get Flolan approved but because this is still an experimental treatment for SPH we aren't sure it will be approved. The average life span after diagnosis of this disease is around 3 years (and it has been over 6 months since diagnosis). Of couse, once again this is not what we were wanting to hear.

When I questioned the doctor as to why this treatment was started earlier, he got kind of defensive with me and said that he was not going to second guess his decision. Just my point...HIS DECISION. After the transplant we were never consulted as to what course of treatment we wanted to take.

I also voiced my concern to the liver team that we were never consulted on the treatment of the PH and they said that they understood. I must take up for the transplant team though, because when I asked they after the transplant why the pulmonologist never came to see me that said that it was "protocal" for them to talk with me about all treatment. As far as the transplant went I was kept very informed of the recovery process and treatment plan and they were very patient while explaining everything to me. We could not have asked for better surgeons, coordinators, nurse and support staff than the ones we had. THEY ARE THE BEST!!!

So now we are waiting for the approval of the Flolan since these seems to be our only option at this time. Ronnie said that he would not undergo a lung transplant even if we could find a hospital that would do one. Since this is a worker's comp claim we expected the approval process to be a long one. If you are wondering how this could be work related, it is because Ronnie hurt his back while working and had to have back surgery. During the back surgery he received blood which was contaminated with hepatitis C and this lead to his liver transplant. Since his liver was so far gone before surgery this caused the pulmonary hypertension which of couse gets us to were we are today.

More tomorrow since it is a holiday and I will be able to find a little bit of free time to write.

OBSTACLES ARE THOSE FRIGHTFUL THINGS YOU SEE WHEN YOU TAKE YOUR EYES OFF YOUR GOAL. Henry Ford

Tuesday, September 05, 2000

Well I did find a little time to write but it is already after midnight.

Now to bring us up to the present. The approval for the Flolan was made the very next week while we were at the liver clinic. This was approximately 3 weeks ago. They wanted Ronnie to go into the hospital on August 21 but I asked them to wait a week as our daughter (13 years old) started back to school on the 21st and Ronnie had an important doctor appt. on the 22nd (which we had been waiting for for over a month)and it was also my last week at my old job.

So, Ronnie went into Emory Hospital on August 28 and Flolan was started the same day. By the second day they had already exceeded the dosage they were hoping for, which was 10 ng/kg/min, and were up to 18 ng/kg/min and he was having no symptoms except for the jaw pain and some headaches. His hickman catheter was installed on August 30 and we started our training on the mixing of the Flolan. This proceeded well and Ronnie was released from the hospital on September 2.

We have now been home for 3 days and so far things are going well. Ronnie has major mood swings and is not real patient with myself or our daughter. When I first had to change the hickman dressing the kit was not the same one used in the hospital (of course) and I got a little confused and he lost his temper. Then tonight we changed the pump tubing and once again not the same one as used in the hospital and you know the rest...

I pray daily for the strength to do what needs to be done daily. Since I work 55 miles from home and am gone from 6:30am until 6:30pm that dosen't leave much time for everything else. Hopefully, now that Ronnie is finally on the Flolan he will feel more like doing some of the things around the house which need to be done. If not, I will just continue keeping my long hours (usually not in bed before midnight and up at 5:30am)to do the things that MUST be done. All the other things will just have to wait.

Well, since it is already 12:30am and tomorrow is a work day I must close for now...but remember

HOPING MEANS SEEING THAT THE OUTCOME YOU WANT IS POSSIBLE AND THEN WORKING FOR IT. Dr. Bernie Siegal

Monday, September 11, 2000

Well it has been a while since I could find a few spare minutes to write. I need this sometimes just to put things in focus and perspective.

Last week was a very trying week with lots of emotion. Ronnie stayed depressed most of the time as he has still not fully accepted all of his new restrictions he has since starting the Flolan. Not much can be done spur-of-the-moment anymore. It was bad enough that he was depressed, but add to that nursing problems and he explodes.

We were suppose to have a nurse come out to the house on the day of dischage from the hospital after being put on Flolan. Ronnie was dismissed on September 2 and the first nurse finally showed up on September 8. Needless to say we had an anxious week not knowing for sure if what we were doing was right or wrong. We mixed the medicine, changed the tubing and the catheter dressing all on our own. I guess since Ronnie is still here and so far there is no infection at his catheter site we must have done it right.

When the nurse finally did show up she left much to be desired. First she was 30 minutes late (with Flolan you are on a pretty tight schedule)and when she finally arrived she proceeded to handle the syringes without even washing her hands. Of couse the first thing we did was to promptly throw the mixed medicine away (and this isn't cheap stuff). By the time she finally left, Ronnie was a nervous wreak. We were suppose to have another nurse come to the house the next day to make sure I was changing the catheter dressing correctly. She called at 2:30 Saturday afternoon and said she couldn't make it that day but would come the next day (Sunday) around 10:00. Since Ronnie didn't know whether or not I intended on going to church he told her I would have to call her back. We I got home he relyed this information to me and I called the nurse back and told her to foget about coming out the next day because the dressing was due to be changed on Saturday and I was going to do it at the right time.

So, today when I got to work I called the nursing service and let them know that I was not impressed at all with their nursing staff. After explaining what had gone on I told them that I would call Thera-Com (distributor of the durg) and advise them to find another service. Besides what had happened both of these nurses were over 2 hours away from our house. I told them that if we had an emergency I wanted someone local, I didn't want to have to be here 2 hours by ourselves or to have to take Ronnie to the local hospital as that wouldn't be much better. Our experience here with doctors has not been very pleasing.

So now we are back up to date on what has been going on. Today was especially hard for me because my allergies have flared up and I don't feel my best and my energy is lacking. It was all I could do when I got home to go get some medicine for myself from the drug store and help Ronnie mix his medicine. I wasn't even going to write anything tonight but I just felt the urge to, so I did. I found myself really encourged when I received an email from a fellow caregiver and knew that someone was reading this (and maybe others to) and maybe something I have to say will help someone else.

I thank God every day for the strength He gives me to go on. I also pray that he will help me to find patience with Ronnie and Stephanie when I am tired, stressed, feeling bad or upset myself.

I always try to remember...

I can do everything through him who gives me strength. Philippians 4:13

Good night diary, thanks for letting me vent when I need to. Your the only one I can really do that with, without hurting your feelings!!

Monday, September 18, 2000

I can't beleive that it has been a week since my last entry. I had a friendly email waiting for me when I finally had time to check them. It was a fellow caregiver just checking in to see if everything was alright. It's nice when that happens since alot of people forget to ask how the caregiver is doing when they call to check on the sick person.

Last week was another hard week. I had to miss a day of work on Tuesday due to my allergies. The only good thing about the day was that Ronnie actually had a pretty good day and did much for himself. Of course after I got better he was depressed again. Sometimes it just takes me getting ugly with him to snap him back into reality and out of self-pity.

Still no nurse has come out to check on us. Good thing everything has been working out okay. I have now changed his cathether dressing about 5 times and so that no longer bothers me. Called Thera-Com today to see what they had done about a nurse and they told me that they did contact the service I had suggested and as soon as they are trained they will send someone out to see us. It will be comforting just to know there is a nurse close by in case we ever do have a problem.

By the weekend Ronnie had really sunk into a really low place, so I finally had to get tough with him and say somethings which needed to be said but which I really hate to do. As usual, it has worked for now and I just pray it will last for a while. He actually got up to day and got out and did some things that needed to be done, such as car repairs. There are just some things I don't like doing and that is one of them.

I also contacted the lawyer today to get her started again about getting something done about the whirlpool tub, tennis shoes w/lift, dentist and money owed us by worker's comp. It is sort of like out of sight (or hearing) out of mind. If I don't keep pushing things just come to a stand still. I don't know why things can't just get done. It has been 6 months now since Ronnie's transplant and still nothing has been resolved. Red-tape - just slows everything done and gives insurance companies an excuse to drag their feet. But, if there is one thing I have learned after dealing with lawyers and insurance companies over these last 16 years - DON"T GIVE UP - because that's what they are hoping for.

Monday, September 18, 2000

Had to stop for a little while to mix Flolan, put my 13 year old daughter (Stephanie) to bed and do a load of laundry. I am going to try and get in bed earlier than usually tonight as I have not caught up from this weekend yet. Not that it was a wild weekend but I did spend the WHOLE weekend cleaning my house and I HATE cleaning. The only fun we had this weekend was when Stephanie and I went to a fund raiser for a club she is in at school. She is secretary of the Y-Club (a christian club) at her school. They had a fund raiser where they threw whipping cream pies at their teachers. They also sold water balloons which the kids threw at everyone. I had only planned on staying about 30 minutes and then going grocery shopping and going back to pick Stephanie up. But after we got there and I visited for a while it was so much fun that I stayed for the whole 2 hours. My only regret was that we couldn't talk Ronnie into going with us. He just dosen't realize how much of Stephanie's life he is missing out on. As I reminded him today, if she goes off to college, we only have about 4 years left with her at home for us. I can't believe that that is possible. She has just grown up way to fast. I will miss her greatly when she leaves home, but I don't want to think about that right now!!

A little information about us: We live in Griffin, GA which is a suburb of Atlanta. I work in Atlanta at - of all places - Emory University. Up until last month I had worked the last 14 years at Atlanta Gas Light Company. Things just got to corporate there and people didn't matter anymore so I decided to look for something better. While going to Emory Hospital during the last 1 1/2 years with Ronnie, while awaiting his liver transplant and then getting it, I really liked the atmosphere there. It is so "people-oriented." I started putting my application in and applying for jobs this past January and in August was hired at the University and I love it. As I told my old employer, I work 1/2 as hard (I worked 10 hours a day for the last 5 years at my old job), am appreciated 10 times more and get paid the same amount. What could be better (other than not having to work at all...)? The Lord was really looking out for me (us) when I got this job. I know it was all in His hands because I had applied for serveral jobs at other places closer to home and never got hired and then Ronnie's PH got worse. I thought then that I would have to stay at my old job for insurance purposes because we didn't know if the PH would be covered by worker's comp. We got the approval that worker's comp would cover the PH on a Wednesday and I got the job offer the very next day. If the call had come any sooner I would have turned it down because I didn't know about the insurance. God is always there when we need Him. He never fails us.

Well it is already 10:00 so if I am going to bed earlier I had better sign off for the night.

I received this on my email the other day:

"The optimist proclaims that we live in the best of all possible worlds, and the pessimist fears that this is true." James Branch Cabell (1879 - 1958)

Which are you?? I am forever the optimist..

Good night to all my new friends. You are all in my prayers.

Wednesday, September 27, 2000

I can't believe it has been almost a week and a half since I wrote in my diary. Where does the time go? Last week was another hard week, since Ronnie was still in the dumps and I had to keep pushing him so he wouldn't sink further. I hate having to do that but I don't know what else to do. His counselor called to see why he hadn't been coming to see her lately and I told her the only thing I could figure out was that he didn't want to hear what she had to say.

By Saturday I thought things were going better. I did one of my favorite things - got my hair cut and colored. That always makes me feel better. My daughter is best friends with my stylist's daughter so we picked her up after I had my hair done and went Christmas shopping at the mall in Macon. If there is one thing I have learned from all of this is not to put things off to the last minute. Stephanie's friend also spent the night with her.

Ronnie's oldest son's wife had invited us to their church for Sunday service. She wanted us to surprise him for his birthday. Of course Ronnie told her we would be there (I knew Stephanie and I would). Well when Sunday morning rolled around the inevitable happened - Ronnie picked a fight with me. See, he doesn't realize it but, this is how he tries to get out of doing things that he doesn't want to do or that scare him (church scares him) - he picks a fight with me. By doing this he can use me as his excuse not to do whatever it is he doesn't want to do. See if we have a fight, it's my fault he doesn't go to church. I didn't let him do it this time though. I waited him out and at the last minute (in a huff) he got in the car and we went to church. Ronnie's son was so glad to see him there. His face just lit up. I have tried to tell Ronnie that it takes so little to make a child feel good. We stayed for the fellowship lunch (which Ronnie also didn't really want to do) and then went home. For punishment he didn't talk to me for the rest of the day.

By Monday he was fine again and all was forgotten (well at least most was forgotten). NOTE: I thought I had just lost all of this information because I couldn't find it anywhere - boy am I happy! All that work didn't go to waste.

But now the hour is late and I will close until I can find another few minutes to write.

I found this saying and I feel it really fits our situations:

Blessed are those that can give without remembering and take without forgetting. Elizabeth Bibesco

Good night all, you are in my prayers.

Thursday, September 28, 2000

Let me pick-up from where I left off last night. Right now I am at work and everyone is out and I am caught up for the moment so I thought I would make the best of this time.

This week has been much better than the last couple of weeks. On Tuesday we had a worker's comp mediation to try to get some decisions made on some outstanding issues. As usually happens when you go to a mediation most of the issues had been resolved before the meeting ever started. I don't know why everything has to be drawn out so much...yes I do, because of the money!!! The further they can string it out the more money they can make (lawyers I mean). The main issue was the installation of a Jacuzzi tub in our house. Many years ago worker's comp installed a whirlpool outside to help Ronnie with pain control and it has been broke for over a year. We never pushed the issue of having it repaired very much because Ronnie was so sick that he never felt like using it any way. Now that he is on his way to recovery his back has started really bothering him again. The need for the indoor vs. the outdoor is actually the issue because worker's comp just wants to try and repair the outside unit AGAIN. But as the doctors have argued, Ronnie's immune system is now compromised due to the immunosupressent drugs he is on and with the PH he can't run the risk of developing pnumonia during the winter time which is when his need for the whirlpool is the greatest. The main reason the doctors want him to use it is because he is a cronic pain patient who has been on injectable pain medicine for about 10 years and the liver team really doesn't want him using pain meds any longer. Of course the real issue is once again...the money. The two estimates that the rehab. coor. has gotten are 10,000 and above, which of course worker's comp dosen't want to pay. So now our task (Ronnie's and mine) is to get local estimates to have the work done, as if we don't already have enough to do. So we will just add that to our "To Do" list for this weekend. All in all Ronnie was very satisfied with the outcome of the mediation, so needless to say this put him in a better mood. He even went to a school function with Stephanie and I that night!!

Yesterday was clinic day again for liver patients. Ronnie had to be there at 7:30 for labs and evaluation. His labs really weren't any better but at least they weren't any worse. So many people we know are having problems with their new livers. One of our best freind's (we met through clinic) wife passed away at the end of July. She didn't actually die from here liver transplant but from lung cancer which had gone undiagnosed. There are 2 men waiting right now for a second liver transplant because the livers they received in March 2000 have already failed. Then on Monday I found out that a 24 year old girl, whom I never met, died after receiving 2 transplants in a months time. Because Ronnie was in the hospital at the same time, I was able to spend many hours talking with her father as she recoved from the first transplant. They are a Christian family and had faith that she would be healed but also knew that she was in God's hands no matter what happened. The last time Ronnie was in the hospital (being started on Flolan) I saw her father again and asked how his daughter was doing. He told me that she had had complications and was in ICU. She was in ICU for about three weeks, in which time she received a 2nd liver but she never woke up after surgery. She passed away last Thursday. My heart aches for her parents as it must be so hard to lose your child.

Now for a little good news. Another one of our friends from clinic received a new liver just last night. I saw her husband today and he told me about the transplant and said she was doing great so far. She has been in ICU for over three weeks waiting for her transplant.

I am hoping in time to be able to meet some people who have PH since at this time this seems to be the center of our world. Our doctor told us that there is an informal group meeting on Fridays but that most of the patients he treats are women. Ronnie probably won't go but I thought I might try it next week. I just feel that it helps when you talk with people who have the same things going on in there lives that you do. That's why I spend so much time reading the other diaries. The only problem is that alot of people just don't post.

Well I must end for now as my boss will be back soon and I don't want him to think I'm not busy. Ronnie's spirits have been much better this week but I am not sure if it's from his going to church on Sunday or from the mediation on Tuesday or both. Of course I am not going to worry about it but pray that his spirits stay up. It is much easier being a caregiver when things are looking up and attitudes are positive!! I don't want to push it, but maybe I can get him to go to chuch again this Sunday. We'll see.

In closing here is one of my favorites:

LET GO AND LET GOD As children bring their broken toys, with tears for us to mend, I brought my broken dreams to God, because He is my friend. But then instead of leaving HIm in peace to work alone, I hung around and tried to help, with ways that were my own.

At last, I snatched them back again and cried, "How can you be so slow?" "My child" He said, "What could I do? You never did let go."

We must truly turn things over to God if we want him to help us. This is sometimes hard and He knows that, so He is patient with us.

Just one last thing. Someone once told me, that when we worry about something, that we are taking the problem back from God because we think he can't handle it. Worry is a useless waste of energy and I don't know about you but I don't have any energy to waste!!

I will post again soon, time permitting.

Monday, October 09, 2000

It has been a while since I last posted and I just don't know where the time goes. Things have been better since my last posting. More good days than bad ones, but the bad ones are SO BAD. Hope we continue to have good ones.

Work is still great so this is a plus. It is easier to be a caregiver when not under so much pressure. The people I work for now are wonderful and so compassionate. They ask about Ronnie everyday...what a change from that last place. My wonderful friend, who has been with me through everything with Ronnie, was at the hospital all day to day while her dad was in surgery. It was so nice to be able to go and sit with her for a couple hours during the day. Her dad is having a tumor removed from his spine. He was in surgery about 10 hours today and they were only able to get about 1/2 of it so they will go back in to get the rest in about 10 days.

I had my father's family reunion at our place this past weekend and it was really great. We had about 25 to show up and the weather was terrific. His oldest brother lives about 15 minutes from me so everyone went over to his house for a couple of hours also. He has emphazyma and is not able to get out much either. He is a really difficult person and I really feel for his wife (who is his caregiver) because sometimes he can be really ugly to him and she really dosen't have anyone to talk to about it. It is at times like these that I wish I didn't work so that I could give support to others in need of it. If you have never been a caregiver for a really sick person you just can't understand what it is like. It really helps to talk to people who can understand. That's why my friend (who's dad had the surgery) is so helpful to me because her father is so much like my husband in his ways.

This weekend we are going spelunking at Lost Sea in Sweetwater, TN with our girl scout troop. I am really looking forward to it as we had such a great time 2 years ago when we went to Cumberland Caverns in TN. We only have 4 girls in our troop at the present time as they are cadettes this year and it's not really "cool" to be in girl scouts. Those other girls just don't know what they are missing!!! I am trying to talk Ronnie into riding up with us and staying in a hotel (since we are sleeping on the cave floor that night)because I think it would really do him good to get away. Sure hope he will decide to go.

We go back to clinic Wednesday and I am sure praying that Ronnie's liver numbers will have improved. I think if they will start improving that that will mean that the Flolan is working to releive the pressure. Prayers are such a powerful thing so I hope whoever might be reading this will stop right now and say a prayer for us. THANK YOU.

I know I haven't really said much (and none of it deep) but it is after 10:00 pm and I told myself that I would get to bed early tonight (have to start resting up for this weekend).

Just something to think about: YOU HAVE TO HAVE FAITH THAT THERE IS A REASON YOU GO THROUGH CERTAIN THINGS. I CAN'T SAY I'M GLAD TO GO THROUGH PAIN, BUT IN A WAY ONE MUST, IN ORDER TO GAIN COURAGE AND REALLY FEEL JOY. Carol Burnett

Good night to all my new friends. I keep meaning to send this webpage to all my old online friends but always seem to forget. Maybe I'll remember tomorrow.

Sunday, October 22, 2000

I can hardly beleive that it has been almost 2 weeks since my last entry. They have been busy weeks and I found no time for my computer except to check my email. I have to check it often or else those messages really add up. On October 11 we went back to clinic again and things were about the same. The liver numbers were up a bit due to the hepititis C returning, but due to the Flolan they can't start giving Ronnie the Interferon for his hep C so it is raging. It's a shame that you have to decide which of the problems to treat and which ones to let go. I guess the doctors feel that for now the Flolan is of more importance than the Interferon. We have been really lucky and the transplant clinic has added a new hepatoligist who has extensive background in studing liver transplant patients with SPH complications. This is really a great advantage and will ensure that Ronnie gets the best treatment in both areas. We also saw the pulmonoligist who didn't really do much at all. Ronnie asked him if he thought that he might be able one day to come off of the Flolan and he said it was not very likely and had us increas the dose by 2ng which brought Ronnie up to 20ng. The hepatoligist told us that he felt the Ronnie did still have a chance at coming off the Flolan. He said that he had seen some patients come off up to 9 months after their transplant. Ronnie's transplant is now 7 months old.

On October 12 we took our daughter (Stephanie) to the fair in Perry, GA. It is a national fair and really pretty big. She took a friend with her and they really had a great time. This is the first time that we have let them walk around by themself and that was really great in their eyesight and really scary in ours. We know that we have to do this sooner or later so we are trying to do it in small steps. We got home after 11:00pm and we still had to mix medicine and get ready for bed. It was after midnight when I finally laid down and boy did 5:00am seem to really get here fast. Stephanie went to a chuch event the next day called Tribulation Tail, which is a walk through play (of sorts) about the rapture. She really had a great time. Ronnie and I went out to dinner and did a little Christmas shopping. We really had a good time. It has been a while since we had had such a good week. Ronnie was in such a good mood all week and things at home and work were really good for a change.

We were suppose to go spelunking over the weekend but out girl scout troop leader's father was in the hospital and her mother had been in an accident earlier in the week so she asked us it we would mind if she postponed the trip. Of couse we all said that we didn't mind. This is the same friend that has been through everything with me that Ronnie has gone through. I told her that I couldn't beleive that she would think that we would mind her cancelling with everything that she was going through, but she's just that kind of person.

Sunday, October 22, 2000

Had to take a break for a little while to do some laundry. That's all I have done ALL day...what fun! Now to get back to the "story". On Saturday (10/14) Ronnie started getting a headache and by Sunday night he was sick with it. When he woke up Monday morning he was itching so bad that he couldn't stand it and his head was killing him. He didn't want to go to clinic but he said he couldn't take Stephanie to school because by know he was also vomiting. I made arrangements to get Stephanie and went on to work and called the clinic as soon as they opened. I didn't hear anything by 10:00am so I walked over to the clinic and found the liver coordinator and explained to her what was going on and she called the doctor and he said for Ronnie to come in. I called Ronnie and told him that after he picked up Stephanie he needed to come to the clinic to be checked. He said that he thought he could make it and would call me if things changed. He got to the clinic around 3:30 and I went over there at about 4:00 when I got off work. By this time I had come to the conclusion that all this might be related to the Flolan as these were all side effects. I thought he wasn't getting enough though and the real problem was that he was getting to much. We went up to talk to the PH people and finally got a doctor to come up to talk with us. He had such an attitude and keep questioning us as to why we had gone up on the medicine last week. I informed him that I didn't know why we had gone up except that the PH doctor we regularly see told us to go up 2ng every other week and that is what we had done. He advised us to go back done to the previous dose immediately and see what happens. We lowered the dose and with in the hour the syptoms started going away and by the next day Ronnie was back to normal. It was a good thing that I questioned the PH doctors because the liver doctors wanted to admit him for observation and and MRI. I told them that Ronnie would rather not be in the hospital and that if he wasn't better by morning or got worse during the night I would bring him back in. Of course they wanted to see him the next day any way so it was another trip to Atlanta just to be told that everything was alright.

On October 19 Stephanie and some of her classmates went to the Spalding County fair. Once again it was after midnight when I got to bed and up again at 5:00am. Stephanie was out of school for a teacher's work day so she and Ronnie got to sleep in...what a bummer! When I got home from work Ronnie and I took Stephanie to Ronnie's youngest son's house to spend the night and go to her Granny's house the next day because Ronnie and I were going to a Georgia Tranplant Foundation conference for the day.

The conference was really pretty good and we got to see some of our fellow transplant friends. We had a good breakfast and lunch and attended some good lectures and picked up a lot of neat giveaway items. Sure wish we could have won some of the great door prizes but no such luck.

This brings me back up to date and all I did today was sleep in (and skipped church)and did laundry ALL day. It is now time to go in and change Ronnie's cathater dressing and get ready for bed. I probably have some emails to answer but that will have to wait for another day. Sure hope this week is another good one as I sure could use another one. I'm waiting to hear how a fellow PH patients test come out. She goes back to the doctor on Tuesday and I am keeping her in my prayers that she will get good news.

In closing just remember...We must not only give what we have; we must also give what we are. Desire'-Joseph Mercier

Good night and you are all in my prayers. I will try to write again soon.

On Saturday

Friday, October 27, 2000

Not much has been happening this week but I had to write and brag on our daughter a little. On Wednesday she got her first report card for this school year and once again she made all A's. The lowest average she had in any of her classes was a 98. She really works hard to get these grades...it doesn't come real easy. She is also secretary of their Y-Club, takes piano lessons, is in the school band, is in Girl Scouts and on top of all of this she has to cope with all of our family crisis. She is an amazing child and a blessing to me. I don't know what my life would be without her in it to bring me joy. She is the ray of sunshine in our lives when things are tuff. She was so focused last school year and it really paid off. Even though Ronnie was in and out of the hospital one or more times every month starting in October 1999, she was still able to end the year not only with straight A's but also as star student for her grade level. What more can I say other than...she is awesome!!

Ronnie has been in a good mood and spirits have been up all week. He went to clinic on Wednesday and his liver numbers were down (YES!! not normal but down). He didn't get to see the PH specialist because he was too busy to come down. I told Ronnie that our best bet is just to start seeing the PH doctor on his clinic days instead of depending on him coming down to the transplant clinic. That way we will also get to meet the nurses and other PH patients and maybe gain some insightful information.

Hopefully we will have a quite and enjoyable weekend. Going to try and go to the movies on Saturday, but probably will not attend chuch on Sunday as they are having high attendance day and I really don't feel we should be doing this at this time since we aren't able to minister to the members we now have.

Keep your spirits up and know that you are all in my thoughts and prayers. Also, always remember to: LOVE THE LORD YOUR GOD WITH ALL YOUR HEART, AND WITH ALL YOUR SOUL, AND WITH ALL YOUR MIND. Matthew 22:37

Tuesday, November 21, 2000

Where does the time go!!! I can't beleive I haven't made on entry in almost a month. I also can't believe that it is almost Thanksgiving. No matter how hard I try I just never seem to get caught up on everything I need to do. The good news though is that Ronnie as felt pretty good (most days) over the last few weeks. We did finally go to one of the Flolan clinics at the hospital about a week and a half ago. We were hoping to meet some other Flolan patients, but there was only one other person there. She was a young girl (late twenties, well young to me) who had been on Flolan for about 3 1/2 years due to PPH. She gave us some tips on how to cut down on the mixing time which we REALLY appreciated. The PH doctor really never seems to do much or seem very interested but we just keep hoping this will get better as we get to know him better. He said as far as increasing the Flolan it is just done on an individual basis and we were to increase it as Ronnie felt it needed to be increased(huh???). We'll see.

We went to Ronnie's sister's house on Sunday to celebrate his mother's birthday and Thanksgiving. Ronnie's youngest son and his grandson were there. It was a really good day. Ronnie seems to need to be around his family more now than he ever has in the past. This is a good thing I think. Family has always been very important to me. We are going to my parent's house on Thursday to celebrate Thanksgiving with them. My sister called me tonight to tell me that my dad may not be home for Thanksgiving as his sister is having open heart surgery tomorrow morning at 7:00am (his other sister had open heart surgery about 2 months ago). He has gone to South Carolina today to be with her. For some reason my mom felt that since she has already made plans for us to be at their house that she needed to stay and cook for Thanksgiving. Of course both me and my sister think she should have gone and we could have fended for ourselves for Thanksgiving. Moms, aren't they wonderful!!

I was able to be spoiled a little myself last week. My mom's sister from Mankato, MN was visiting for a couple of weeks and they came and spent last Sunday night and Monday with us. My aunt does foot reflexology (and she is great at it) and she worked on my feet for over an hour. IT WAS WONDERFUL and I felt so relaxed afterwards. It's nice to be spoiled every once in awhile.

My parents have really been busy this year. Besides spending 6 weeks at our house during Ronnie's liver transplant, they spent several weeks in October in Augusta taking care of my dad's sister after open heart surgery. Then about 3 weeks ago my sister fell and broke her hip so they spent about a week with her helping her out with her child. Now my dad is helping out with his other sister. Good thing they kept themselves up so well. Who would have ever believed that at 70 they would still be taking care of us instead of us taking care of them. I sure help I can be like them when I get old.

Work is still going great but I am looking forward to my couple of days off. Stephanie has been working really hard at school and is also looking forward to being out for a few days.

Well once again I started this late and tomorrow is a work day so I need to say good-bye. I know I didn't write much about Ronnie or his illness, but when things are going good I don't like to dwell on the bad stuff. We spend enough time doing that so the break is good.

Hope everyone has a wonderful Thanksgiving and gives the One responsible for all the things we are thankful for the thanks He deserves. I know I will.

If closing remember:

HE HAS PUT HIS ANGELS IN CHARGE OF YOU TO WATCH OVER YOU WHEREVER YOU GO. Psalm 91:11

Goodnight everyone. (Remember: Just 33 more shopping days!!)

Monday, December 18, 2000

Well, I finally made it back. Almost a month - the longest I have been out of touch. I'm surprised I haven't been chastised!! I have been so busy lately with Thanksgiving and Christmas, but it has paid off. I have finished all of my Christmas shopping and have everything wrapped and under the tree and still have a week before Christmas. I also already have all of my Christmas cards sent (except my on-line cards). What a wonderful feeling!! I even took the time to write a Christmas letter to my friends and family and include it in their card. I am so proud of myself!!! I set a goal for myself this year and met it. I was so tired of working to get everything done right up until Christmas eve that I set a goal to have everything done at least a week before Christmas. Because I was always so busy getting stuff done, I never got to enjoy the spirit of Christmas. This week I will spend listening to Christmas carols, watching Christmas movies and reading the Christmas story with Ronnie and Stephanie. It is going to be soooo wonderful :-)

Ronnie, for the most part has been in pretty good spirits (even though Stephanie and I accused him of being the "grouch" who stole Christmas. Sometimes he can be so bah-humbug. He better count himself lucky that I'm still around after what he did at Thanksgiving. We went to my parents on Thanksgiving day and I told him that I did not plan to go back home until Friday around 4:00pm. Well on Friday at about noon he desides that he is ready to go home and proceeds to try and MAKE me leave. I let him know that he was not going to change my plans (especially since I told him that he didn't even have to go with me) and I would leave a 4:00. So what do you think he does??? HE LEAVES ME AT MY PARENTS AND GOES HOME (we live about 2 hours away). I had to get my dad to take me home the next day. I was so humiliated and hurt. After all I have done and do for him, for him to treat me this was was so devestating. But, as always, I try to understand were he is coming from and what he has been through and work through my feelings. It just seems to get harder to do each time but once again we survived this battle but not without a few wounds. He has been pretty good ever since.

As for Christmas, his two boys and their families are suppose to come to our house for lunch/dinner on Christmas eve day. My parents are also suppose to be there and they will spend the night and leave Christmas morning and go to my sister's house which is about 2 hours from our home. Then on Christmas day his mom, sisters and possibly one of his brothers is suppose to come to our house and bring Christmas dinner with them. As for Christmas eve we are preparing an easy meal of honey-glazed ham, potato salad, baked beans and George Washington salad (not traditional but easy). If Ronnie can keep from "grouching" to much we should have a pretty good time. Stephanie is really looking foward to it. She is such a family person.

Ronnie has been feeling pretty good and we are still going up on his Flolan. Two weeks ago we went to the liver clinic and his numbers were the best they had been since July or August. We were so glad to see this. He also had an echocardiogram done and the doctor said that there had been some improvement in his lung pressure and heart function. This past week he has been having some more chest pains and alot of dizziness so we are suppose to see the PH doctor during liver clinic this week. We are praying that all will be fine and he will just need to go up on his Flolan again. He has such a hard time dealing with his limitations and even a harder time seeing the positive in things instead of the negative. I really stay on him about this even though so many people tell me that it is just because of what he has been through and is going through. I don't like him to use that excuse, especially since there are so many people who have been through so much more and still maintain a positive attitude. If he gives in to the negativity it just makes him feel worse. I know I haven't been through what he has been through physically but I have been through everything else along with him. He has been given a second chance at life and should really appriciate it. I know that this is much easier for me to say since I don't have his problems but I really hope and pray that if I ever do have anything like this I will keep my positive attitude (at least most of the time!).

Since I am at work writing this I will end for today (even though we aren't busy) so that I can do a little work. Hopefully after the holidays I can spend more time with my diary as it helps me to stay sane in this much to busy life. I hope that all of you out there in the PH world and your families have a wonderful holiday season. My prayer for you is that your health will be good during the holidays so that you can enjoy them and that your health will improve in the new year. Always remember: JESUS IS THE REASON FOR THE SEASON.

MERRY CHRISTMAS AND A HAPPY NEW YEAR TO ALL OF YOU.

Tuesday, March 06, 2001

I can't believe it has been so long since I have made an entry. Time just seems to fly by almost as fast as the speed of light. My daughter, Stephanie, just celebrated her 14th birthday last Friday and it was so hard for me to believe that 14 years have gone by since she was born. Over the last few months things have been up and down and good and bad. They have leveled out over the last couple of weeks and I just pray they stay this way for a while. Ronnie's liver numbers have been perfect for the last couple of months and they have held him at his current level of Flolan (21ng/kg/hr) for the last 2 months. The doctor was planning to wait until June to do the next echocardiogram but now has decided to do it his month since Ronnie hasn't been having any problems. And wouldn't you know it, no sooner did the doctor say this then he started to have some SOB and chest pain. We have notice that when the weather gets rainy or cold he seems to have more problems. We aren't going to tell the doctor so that they will go ahead and do the echo. We really want to know if there has been any change. Ronnie has really been on an emotional roller coaster lately and he can't (or won't) tell me why. I suspect that it is some guilt over someone dying so that he could live (as he looks at it). March 17 will be one year since his transplant and maybe that is making his guilt stronger. I have finally persuaded him to attend chuch with me and Stephanie and this has seemed to help with his rage. It is so hard to understand why he fights everthing good in his life so much but I will continue trying for as long as I can. He has had so many problems for so long and that he seems to focus on these instead of focusing on something more positive. We did attend a support group for Hepatitis C patients last month and he seemed to find it interesting so I hope he will attend again this month. I just feel that it helps him to talk to other people who are going thru or have been thru some of the things he has. I can empathize and care but I really don't understand what he actually goes thru. Only someone who has been thru it can really understand. As far as everthing else, my job is going great, Stephanie is doing great in school, Ronnie's boys and their families are doing well and Ronnie is improving daily.

Pray for us that we will get good news this month about the PH. I am assuming that if it has not improved by now it probably is not going to. Ronnie really has his hopes set on getting off of the Flolan.

We will continue praying for our PH friends (and reading your diaries) and maybe this time I won't neglect my diary so long.

Take care and God bless.

Tuesday, April 17, 2001

Well, once again it has been along time since I have been back to my diary. Things have been going really good lately and when this happens I just don't seem to find the time to get to my computer. I am writing this at work as it has finally slowed down for a little while. Last week was the first time in almost six months that Ronnie has had to be in the hospital.

Last Monday Ronnie woke up, took his shower, took Stephanie to school and then went back home. When he got home he noticed that his shirt was wet up around his catether so he called me. I called the doctor's office and they told me to have him come to the emergency room. He drove himself to the emergency room (which we were really lectured about) and when he got there they checked him and then had a nurse from the cancer floor come down to look at the catheter. She took one look at it and said that it had a tear in the line right where it was coming out of his chest. This is where the circus started...Before anyone even verified to see if the line really did have a tear in they sent Ronnie to radiology to have a pic line put in his arm. After this was done they sent him back to the emergency room to wait some more. I went to the emergency room to check on him during lunch and he was so frustrated that nothing was being done. He got to the emergency room around 10:30am and at about 4:00pm a surgeon finally came to check on the catheter and could not find a leak anywhere (by this time it had indeed stopped leaking). They had put the pic line in at about 1:00 and at 4:00 when the surgeon came in they had still not transferred the Flolan from the catheter to the pic line so of course we couldn't understand what the rush was to put the pic line in in the first place. They decided to keep Ronnie over night so that they could have radiology run die thru the catheter to make sure nothing was wrong with the line. By 1:00 the following day they had still done nothing to check the catheter so Ronnie told him that he was checking out and going home. Finally at about 4:00pm the head surgeon came in and looked at the catheter and decided that there was nothing wrong with the line and dismissed him. Of course he still had the pic line in and it is supposed to be removed this Wednesday. I am really beginning to wonder about our medical profession. Most of the people we dealt with last week really kind of had the attitude that they really didn't care and please don't bother them.

Other than that little ordeal things have been going pretty good. Ronnie has been going to church with me and Stephanie for about the last 6 to 8 weeks and his attitude about things really seems to be better. He doesn't seem to be letting the little things bother him as much as he use to. I just pray that this continues because it is so nice to go home to a happy home in the afternoons.

I can't believe that there are only about 6 weeks of school left!! Where has the year gone. Since Ronnie's transplant things seem to be moving in fast motion. There never seems to be enough time to do anything anymore. Of course, since the house needs to be painted and my dad has "voluntereed" to come up and help me, I guess I will have to find the time to do that. I never turn down "free" help...but my dad wears me out when we work on a project. We painted the inside of the house about 18 months ago and we did the whole thing in one weekend. Boy was I tired for the next couple of weeks.

But I don't want to complain to much because it is so nice to have Ronnie back active and healhly. Last year we weren't even sure he would make it and if he did how much he would be able to do. To see him today you would never know that he was on death's bed last year.

Well, I am going to close for now as I need to get back to work. I really do intend on writing more often but I just prefer spending time with my husband and daughter instead of my computer. But never forget, you are always in my thoughts and prayers and if reading these diaries helps anyone at all then it is worth it. I know that I enjoy reading the ones that are posted to and sometimes I even learn something!!!

Tell later...

Tuesday, May 01, 2001

Well I did better this time as it has only been a couple of weeks since my last post. Work is beginning to slow down as the semester is winding down and finals are this week. I don't know what I am going to do all summer as there are no classes during the summer. This is my first summer working at the university so it will be an experience. I have never had a job where I was not in constant fast motion. It has been kind of a nice break.

Well my dad did come up this past weekend and we did get the house painted. It wasn't nearly as bad as the inside because I decided not to trim anything but the shutters. The trim work is what will wear you out. Right now Ronnie and my dad are at home replacing the railing on my front deck (if they haven't killed each other) as it was in need of repair. My parents sometimes seem to forget that Ronnie is not as healthy as he looks and my dad expects quite alot. Then of course Ronnie isn't the easiest person to get along with either.

Stephanie won 1st place with an essay that she wrote for the Daughters of the Confederacy organization. Now it is sent to district and if she happens to win there is will be sent to state. She was furious with me for making her write the paper but winning the $25.00 prize seemed to make it worthwhile.

It seems funny that there is so little going on in our lives right now as that is so unusual. I have planned a trip to Myrtle Beach in June for mine and Ronnie's 15th anniversary. I am trying to keep him as healthly and happy as possible so that we will be able to go and have a good time. It has been a long time since we have been on a trip and he hasn't been sick while we were gone. Pray for us that he will stay healthly.

I guess I'll close for now as there is really no other news to write about. I am glad to read that some of the PHers are doing better and saddened to read that some of them are not. I will pray that all of you have improved health and good days.

By the way, thanks for posting Teddie it was good to see a new entry but now I understand your delima...post or check out the racing website. Hard choice.

Hope everyone has a good week.

Thursday, September 20, 2001

This will be my last post for several reasons. The first reason and most important one is because Ronnie is off of Flolan and no longer has SPH. Since his illness was brought on by his liver failure he was able to recover once his new liver started fully functioning. There was always the chance that it would not completely cure the SPH but the doctors had been optimistic that within 9 months of his liver transplant that his SPH would go away. It actually took 16 months for his SPH to go away and at the end of July they put him in the hospital and stopped the Flolan and he has be doing fine. The other reason for no longer posting is because we are no longer together. The sad thing is that it wasn't his illnesses which caused the problems but his general outlook on life. I hope and pray that in the future he can come to appreciate what a miracle it was when he got the transplant and how wonderful life can really be. I also hope and pray that all of you will continue fighting this horrible disease and that one day you may too be able to be cured.

Don't forget: You can do all things through Him who gives you strength. Philippians 4:13

Good luck and God bless you!!!!