Wednesday, January 18, 2012

HI All, i know it has been sometime since my last blog, and i must first apologize for staying away for so long. If you are a regular follower of my blog, you should be aware that i have been through it and back, this past summer, since my transition from PD to hemo, due to the development of an umblicial hernia, (in which i developed during my six year of PD), didn't began to wreak havoc on my body, until early last summer. I returned to Hemo, in good faith, that i would be having this hernia repaired shortly thereafter, and i wouldn't have to endure this perm cath in my chest for no more than two months, at the most, but that didn't transpire, about a month into my hemo treatment, i was having major problems with fluid collecting around my lungs, causing major breathing issues (to the point, that i had to sleep on two to three pillows to even get a restful night of sleep). My neph realized the severity of this lung issue, and that hemo treatment wasn't removing the excessive fluid much, (and the one thing i do know, is i do watch my fluid intake very closely), so i know it wasn't anything to do with me over indulging on my fluid intake, as a matter of a fact, i would only have a glass of orange juice in the morning with my breakfast, and for lunch, i would drank a boost protein drink (for much needed protein, that i very seriously needed). Now, what truly delayed this hernia repair surgery, was the fact, that my neph wanted desperately to have an andrenal gland removed, because he discovered that the hormones produced from this gland, was causing my elevated blood pressure (and that if i have a gland removed, i may not have to no longer take so much b/p controlling meds, or even take any at all, and of course, i was all for that, but all this soon became very complicated, because he also wanted to remove a kidney in the process, and this was because, my polycystic kidney disease, had caused my kidneys to become very enormous, and crowding in my other organs (which can also lessen my risk for a re occuring hernia, if a kidney was removed). After my neph discuss this with the surgeon, it was on to the issues with my lungs. I had a echocardiogram ordered by my cardiologist, because she was baffled as to how this all happen in such a short period of time. I had, had an angiogram earlier last year, and she was pleased with the results, and gave the OK to go ahead with the IVIG procedure at Cedar Sinai Medical Center (LA). They also requested that i have a kidney removed before they could proceed with this procedure (to help in lowering my antibody levels (in which that is the sole reason, why i haven't received the blessing of a 2nd cadaver kidney), and that is another story for another time. Now back to the story at hand, after having this procedure to have fluid removed from the left side of my lungs, i soon began to feel better, but i was told by the dr. that she could only do one side at a time, and that i still had some dimishing around the right side of my lungs, and that i may have to have the right side down as well, but that never happened. Soon i was back to the breathing issues, (shortness of breath), sleeping on three pillows for restful sleep, and coughing consistently. I immediately brought this to the attention of my neph, and he said i truly needed to see my cardiologist as soon as possible. To be honest with you, i had my theory, as to what actually occurred during my early transition back to hemo, (this perm cath, began to be a problem, i was given that med, to dissolve the clots), and it worked for me three times, but that thursday, before New Years, they gave me the med (2 hours before), and then began to start my hemo treatment, but it proved unsuccessful during the first hour of treatment, the venuous line was running very high, and my blood flow, wouldn't get no higher than 250, it was also great that my neph was there that day making his monthly patient rounds, he examined me, and saw that my hernia repair was completely healed, so he said i needed to report to the PD department to get started on PD immediately. I did, and was given instructions to do manuals for the first few days, and to try to take off as much fluid as i could (so i used the strongest strength dextrose - 4.25 - two red bags. I was also told to not move around while dwelling, to lay flat, as not to cause any harm with the newly repaired hernia, which could come back at anytime, with the dwelling of all that fluid, so i followed the instructions, and everything went well, so i was permitted to use my cycler on the next treatment, which was a 10 hour session at night, and that went well. However, i was still having issues with fluid overload, and like i said, i do have a theory, that this darn chest cath that i am sporting, is the culprit. I discussed this deeply with my heart dr, and she was in agreement, she even showed me an x-ray of my heart and lungs, from an x-ray down during the early spring months, vs. the latest x-ray, which showed a big difference. As i was lying down, while she examined me, she examined my neck and veins as well, and pointed out to my 25 year old med student daughter, that the fluid was steady collecting in a vein on the right side of my neck, which is where my perm cath is located as well. She also said why haven't you had that catherer removed yet, and i couldn't even give her an explanation as to why, because it was up to my neph to have this scheduled to be removed, however, he did tell me some bogus explanation, like we want to make sure the PD is working fine, before we have the catherer removed, just in case you will have to have some temporary hemo, but that is bull, my PD cath is working just fine and my treatments are going well on the cycler. It was planned for me to return to PD the first of the year, but because of all my issues with this perm cath, and i had to immediately return to PD, all my New Years holiday plans were a bust (and because new year's eve is my wedding anniversary, and i thought it would be nice to celebrate, and not have to cut the night short, because of my scheduled cycler treatment,the hemo would have been beneficial for my anniversary, oh well enough about that, i am starting to sound pitiful, and i am much stronger than that. Well this is my saga in a nutshell. I still haven't as of yet, been scheduled to have this perm cath removed, and i am truly sick of taking all these bird baths, so we will see, when i see my neph next week, if he will finally schedule to have this perm cath removed, i know that it will make my life much more bearable, and i know all this lung issues will slowly began to resolve. I know i am not a doctor, but living and coping with PKD and dialysis for as long as i have, i know my body, and how i should feel, as far as energy and strength goes, and i haven't had much of that since my return to hemo back in July of last year, plus i am losing some serious body weight (i was 52kg on my return to hemo, and within a month, i was down to 43kg, taking me down to a 98 lb weakling, but lately since trying to remove more fluid with a strong PD solution, i was down to 93 lbs, and this is not acceptable, i can't wear any of my pants, plus my underwear is beginning to fall off me (there are times, when my underwear is down by my knees, and this has never happened before, i had to go out and practically invested in yes, little girls panties to fit comfortably (lol). To be honest with you, i had to muscle up the strength to even type this blog. I am now getting very fatigue and exhausted, and besides it is time for my nightly cycler treatment to began, so until next time, and don't get discouraged, if i take so long to blog again, but just remember, i had plenty to blog about during my hemo days, returning to PD, there isn't much drama going on, vs. all the drama that goes on at the hemodialysis department of the unit, but i will from time to time, keep you posted on anything that i experience or have knowledge of, that could potentially be beneficial to many of my PD followers out there, and i will let you know when this cath is going to be removed, and most importantly how well i will recuperate from having it removed, i know in my soul, that i will triumph over all these trials and tribulations, (just like i have in the past, during these 20 years), that i have had to endure during this temp hemo saga. Until next blog, stay well and compliant with whatever is needed to keep yourself healthy, and learn all you can, because knowledge is key, in a life with dialysis. due to how ill i have been, i hope this blog makes sense. (lol)